Networks for Development

Lessons Learned from Supporting National and Regional Networks on Legal,
Ethical and Human Rights Dimensions of HIV/AIDS

October 2000

 

Table of Contents

Preface

  1. Introduction
  2. Background
  3. Networks and Networking
  4. Conceptual Issues: A Networking Approach
  5. Supporting Regional Networks
  6. Supporting National Networks
  7. Lessons Learned for Impact & Sustainability
  8. Suggestions for Assessing Networks
  9. Case Study - Nicaragua
    Appendix 1-
    International Guidelines on HIV/AIDS and Human Rights issued jointly by the Office of the High Commissioner and Human Rights and UNAIDS
    Appendix 2-
    References & Resources

 

Preface

Sustainable human development and human rights are inter-dependent and mutually reinforcing. They share a common goal of promoting and protecting the dignity and well-being of all individuals.

This vision of development is seriously threatened by the HIV/AIDS epidemic. In heavily affected countries, particularly in sub-Saharan Africa, there is increasing evidence that demonstrates the negative impact that HIV/AIDS is having on households, health, education and farming systems, private businesses, public administration and many other spheres of social, cultural and economic development.

In all too many countries and communities, denial, fear, stigma and discrimination continue to fuel the epidemic and represent real threats to the people and communities most directly affected, as well as being obstacles to reducing the spread of HIV and mitigating its impact. The issues upon which policies and programmes are needed are often extremely complex: moral, ethical, social, cultural, economic, religious and legal factors must be taken into account.

States have primary responsibility for promoting and implementing policies and strategies that protect human rights. The international community of states, United Nations bodies, agencies and programmes, regional intergovernmental bodies and non-governmental organizations, including networks of various communities, also have critical complementary roles to play in terms of providing necessary support and capacity for national efforts.

Universal human rights standards can help to guide national responses to HIV/AIDS. Measures elaborated in the International Guidelines on HIV/AIDS and Human Rights, issued jointly by the Office of the High Commissioner and Human Rights and UNAIDS can assist States in translating international human rights norms into practical observance in the context of HIV/AIDS (see Appendix 1)

The potential of networks to form a critical part of local, national and regional responses to the ep idemic was recognized early by the UNDP, in part because sustained and effective multisectoral responses to HIV/AIDS depend just as much on personal and society-wide commitment as on interventions that external observers may view as necessary. Therefore, s upporting networks became a key area of UNDP activity on HIV/AIDS with a broad range (both thematic and geographic) of networks supported: including networks of people living with HIV/AIDS, and of particular relevance to this publication, networks on lega l, ethical and human rights dimensions of the epidemic.

This publication has been produced jointly with UNAIDS, with the principal aim of synthesizing almost a decade's experience of supporting the establishment and development of such networks. By the year 2000, thirty eight such networks had been established in four regions of the world. This publication brings together work from a number of sources including assignments undertaken for HDP by Anne Bernard (an Ottawa-based specialist in development and networks) and Julie Hamblin (an Australian lawyer with expertise in Human Rights and the HIV/AIDS epidemic and long-time associate of the UNDP HIV & Development Programme). Nadia Hijab (a New York-based development specialist) took on the daunting task of assembling and making accessible various documents associated with this project, including the preparation of the first draft of this publication. Within HDP, Ben Brown provided backstopping support for the country visits and oversaw the logistical arrangements. Prof. Babacar Kante, Dean of the Law School at St. Louis, Senegal and Advisor to the Africa Regional Network on Ethics, Law and Human Rights and HIV, and Miriam Maluwa, UNAIDS Secretariat Law and Human Rights Adviser, generously provided legal and human rights insights from their specialist perspectives. The final editing of this document was done by Mr. Peter Gordon, an associate of the UNDP/HDP who brought his extensive knowledge of HIV and development and enriched it and us.

However, this publication would have been simply inconceivable without the support and participation of each of the network partners. We have been privileged to share in their processes of reflection and learning, and for this we owe each of them a significant debt of gratitude.

The document is intended as a vehicle to support those interested in exploring the usefulness of networks as a development tool. Ultimately, however, the over-arching purpose is to support those struggling to address some of the complex legal and human rights issues which impinge so much upon the lives of all who are affected by this epidemic.

 

Mina Mauerstein-Bail
Manager, HIV & Development Programme
October 2000

 

 

1. Introduction

Purpose, Structure & Intended Audiences

The two principal aims of this publication are to synthesise and disseminate key lessons learned from a decade of experience supporting the establishment and development of networks.

The structure of the document is as follows:

  • Introduction
  • Background
  • Networks & Networking
  • Conceptual Issues: A Networking Approach
  • Supporting Regional Networks
  • Supporting National Networks
  • Lessons Learned for Sustainability and Impact
  • Case Study - Nicaragua
  • Suggestions for Assessing Networks
  • International Guidelines on HIV/AIDS and Human Rights issued jointly by the Office of the High Commissioner and Human Rights and UNAIDS
  • References & Resources

The primary intended audience for the Guide is of course UNDP staff, particularly those working in the field. However the Guide has been produced in such a way as to have broader relevance and appeal: for example, among those working in government, NGOs, donor agencies, UN agencies: in fact anyone considering offering support to networks in order to address a specific development challenge. It should also be useful to those, including activists, who are planning to establish networks. The distinction between these two groups is important: the role of the former is to facilitate the establishment of networks; the role of the latter is to participate in the networks they create.

Are networks the most appropriate mechanism to support capacity development? When and how should networks be formed? What factors should development professionals - in government, non-governmental organizations (NGOs), and the donor community - consider before supporting or establishing networks? This Guide explores these questions, drawing primarily on specific UNDP field experience in promoting networks in Africa, Asia and Latin America.

 

2. Background

The mandate of UNDP is to build national capacity to achieve and sustain human development, by providing sound policy advice, building capacities for action on issues that are critical for reducing poverty, supporting coordination and promoting democratic governance at all levels of society.

Working within this framework of sustainable human development, UNDP's response to the HIV epidemic has been based on a commitment to ensuring that responses to the problems of HIV and development arise from an enhanced capacity:

  • of individuals, communities and nations to understand the nature of the epidemic in their own contexts;
  • of individuals, communities and nations to find effective means of responding, which in turn depends on;
  • People and organizations in all sectors (government, NGOs, the private sector, health and development agencies, religious organizations, and others) to work cooperatively and communicate with each other about problem definition as well as resolution.

UNDP's involvement with the epidemic dates back to 1987 when it began receiving requests from governments to support HIV/AIDS programmes. In 1992 in response to the rapidly increasing spread of HIV globally and recognition of its implications for sustainable human development, the HIV and Development Programme (HDP) was established by UNDP and regional bureaux within UNDP also began to intensify their level of programming at the inter-country level, notably in Africa and Asia and the Pacific.

A United Nations Joint Programme on HIV/AIDS (UNAIDS), co-sponsored by UNDP, UNESCO, UNFPA, UNICEF, WHO and the World Bank, officially began work on 1 January 1996. 1

The role of UNAIDS, inter alia, is to promote and support more effective, mutually supportive and complementary cooperation within the UN system, with highest priority placed on supporting effective and sustainable multidimensional country level responses. As a co-sponsor of UNAIDS, UNDP works collaboratively with other cosponsoring organizations to contribute to the overall goals of this collaborative initiative.

Early on, legal, ethical and human rights dimensions of the epidemic were identified by UNDP as critical issues to be addressed if progress were to be made towards effective, multi-sectoral responses to the epidemic. Consequently national HIV/AIDS programmes were (and continue to be) encouraged to include these issues, as appropriate, within their national plans and strategies. At the global, regional and country level UNDP continues to work on these issues with relevant departments and agencies of government and civil society.

Following the creation of the UNDP HIV and Development Programme, a key initial activity involved the commissioning of a number of 'Issues Papers' on important (and sometimes neglected) topics by known experts. 2

At country level, through programmes and projects, UNDP has supported capacity building activities on human rights issues within the context of HIV/AIDS, as well as participating in joint UN system initiatives with the UNAIDS secretariat and Co-Sponsors.

In January 1998, UNDP issued a programming policy on "Integrating Human Rights with Sustainable Human Development". Three points of departure were identified for implementation of the policy:

  • Strengthening human rights capacities of national institutions
  • Integrating human rights into sustainable human development programmes
  • Playing a proactive role in the international dialogue on human rights and the follow-up to major UN conferences

In the context of UNDP’s role, both as a development agency with a policy on Human Rights and as a co-sponsor of UNAIDS, with a track record on legal, ethical and human rights issues, UNDP consistently works to integrate legal, ethical and human rights dimensions into its development programming and its projects.

Over time and through experience, thinking within UNDP on how best to address legal, ethical and human rights issues in the context of the epidemic has shifted from a narrow focus on law, the legal system and the specific role of lawmakers, towards a broader, more inclusive approach which focuses on capacity building with a wider cross-section of society. Specifically, those working in this field have learned that capacity needs to be built within both communities and individuals, and this needs to be an inclusive process involving stakeholders from all sectors of society, especially those affected by HIV/AIDS. In seeking ways to support action in these areas, and within the context of limited resources, UNDP has pursued new approaches to building capacity other than those which focus narrowly upon institutions. After considerable reflection and review, it was decided to support the creation of networks comprising individuals and institutions involved with legal, ethical and human rights dimensions of HIV/AIDS.

It was believed that success and longer-term sustainability would be more likely if it were possible to bring together individuals and groups from government, (judicial, legislative and executive branches at both national and other levels), representatives of the private sector, academia, civil society organizations, especially associations of people living with HIV/AIDS, together with human rights groups. It was hoped that this resulting broad coalition of interested parties would be able to address pertinent issues within their own national, provincial and local contexts. 3

In order to pursue this concept operationally and with urgency, UNDP began to support this approach to networking. To date, support has been provided for the creation and the operations of networks at national and regional levels in some 38 countries and four regions.

Addressing human rights, ethics and legal dimensions of the epidemic required working with a broad range of partners including: government officials in different ministries at the national level and with local government, with development as well as with human rights NGOs, with people living with HIV or AIDS (PLWHA), activists, academics, the private sector, legal professionals, religious organizations, development agencies, HIV community organizations, and those in related fields such as gender, young people and labour organizations.

A note published by HDP in 1996 on "Legal and Ethical Networking: Enabling a Community Response" identified the actual and potential functions of these networks as:

  • providing space for reflection on and consensus-building around difficult issues,
  • exchanging information about experience and expertise,
  • providing expertise and services,
  • linking local issues to national and international policies,
  • advocating the rights of PLWHAs, and
  • capacity building of communities and nations to address complex HIV-related legal, ethical and human rights issues.

 

3. Networks and Networking

Some Definitions:

Development The first Human Development Report (1990) affirmed that the process of development should "create a conducive environment for people, individually and collectively, to develop their full potential and to have a reasonable chance of leading productive and creative lives in accord with their needs and interests" (p. 1). Successful development, therefore, supports change from a non-conducive to a conducive environment.

Capacity Development UNDP's policy bureau defines capacity development as "the process by which individuals, organizations, institutions and societies develop abilities (individually and collectively) to perform functions, solve problems and set and achieve objectives" (Management Development and Governance Division, Technical Advisory Paper 2, 1997).

Networks & Networking A distinction should be drawn between networking as an activity, and networks as a mechanism. The HIV/AIDS Networking Guide produced by the International Council of AIDS Service Organizations (ICASO) notes that there are no fixed definitions for "networking": the definition of networking used by ICASO is: "a process by which two or more organizations and/or individuals collaborate to achieve common goals" 4 The term "network" is to "refer to the set of organizations and/or individuals that join in collaboration".

Anne Bernard defines networks as social exchange arrangements, noting that "networks depend for their success and durability on members who commit to one another on a personal level for joint exchange, action and learning" 5

Following on from the above definitions, some of the potential benefits of networks become clearer. If sustainable development, at least in part, involves a process of change towards a more enabling environment, then this process will require different types of capacity within different groups at different times. Ironically, the resources and mechanisms that give institutions their sustainability – for example, staff, space, organisational structures - may not necessarily be compatible with the flexibility required to respond promptly to a constantly changing situation. However collaborative arrangements between institutions, groups and/or individuals – ‘networks’ – may, in many situations, be the most appropriate way of building the capacities necessary to manage a changing environment.

"Networks, as loosely-coupled arrangements of social exchange, co-operation and mutual support, would allow for widely varied membership and iterative action. They would be a way of supporting the mix of initiatives needed to define the increasingly varied ethical and legal issues confronting affected individuals and groups in their different settings and circumstances. And they would serve to generate the kinds of adaptive strategies and multiple capacities needed for managing them. Beyond what traditional institutions were able to do, networks would have the potential to be flexible, broadly participatory and non-directive and quick to act". (Bernard p.1).

 

Characteristics

The characteristics of networks vary depending upon the functions they perform, and the context in which they are established. While one of the strengths of networks is their flexibility, nonetheless there are some shared characteristics across all networks. Some of the most essential characteristics of networks are: 6

  • venues for social interaction through exchange and mutual learning,
  • member-ownership and interpersonal commitment to shared objectives and means of action, and
  • capacity for responsive adaptation in the face of variable local contexts, including opening opportunities, creativity, and risk-taking.

and their:

  • cost-effectiveness, since they involve a pooling of resources; and
  • speed of response and flexibility, since they are in theory unhampered by rigid structures.

Networks can come together in relation to specific themes. Within the context of the HIV/AIDS, there are networks dealing with subjects as diverse as children, drug use, lesbians, gay men and other men who have sex with men, women, migrants, people living with HIV/AIDS, sex workers, and ethical, legal and human rights issues.

Networks can be formed at many levels: local or sub-national, national, regional and international. Working arrangements may vary considerably between being very loose and informal at one end of the spectrum, to having formalised operational procedures and structures including governing body, premises and staff, at the other.

Networks are not institutions. Undoubtedly they can complement institutions, but networks lack the depth and continuity of a strong institution, qualities which are necessary for sustained capacity development, programme delivery and generation of policy at national and local levels. Networks can mobilise interest, foster communication and transcend barriers.

Functions

Networks can perform different functions. Some networks perform more than one function, while a single network can perform different functions over the course of its existence. The ICASO HIV/AIDS Networking Guide identifies four main functions for networks: generating and share information and analysis, advocacy, skills and capacity building, and building solidarity.

Terry Smutylo, Director of the Evaluation Unit at the Canadian International Development Research Centre, noted that a review of IDRC experience had identified three different types of networks: task-oriented and mutual-support arrangements; capacity-building, exploratory and catalytic; operational and research. 7 The primary function of the UNDP-supported networks was intended to be capacity-building. However, the majority of those that were successful were multi-functional: providing mutual support to deal with law reform, enabling more forceful advocacy to articulate human rights, improving communication between groups and between urban and rural areas, and helping develop capacity to deal with difficult issues in a rapidly changing environment.

 

4. Conceptual Issues: A Networking Approach

The integration of ethical perspectives and principles of human rights is an essential element of a comprehensive national response. Within the context of UNDP's response to the epidemic, the primary purpose of networking is to strengthen the capacity of countries to develop consensus on appropriate legal, ethical and human rights responses to the epidemic. Networks are consistent with participatory and non-directive approaches, allowing for locally meaningful and relevant solutions to emerge in response to local characteristics and conditions. The networking process should ensure that responses are meaningfully reflected in people’s daily lives.

Networks can be a forum for bringing together key stakeholders including people living with HIV, ethicists, lawyers, health professionals, human rights and women’s advocates, and others, to work together towards building consensus on effective responses to the diverse challenges raised by the HIV epidemic. Potentially, networks are an important capacity-building mechanism. They can be uniquely flexible and sensitive to changing needs and situations, and strong in consensus-building and the implementation of sustainable solutions.

An important principle in the establishment of networks is to identify and draw upon existing resources in order to create a multi-disciplinary, non-hierarchical, flexible group of informed, engaged and courageous individuals, groups and organisations. With support the group will work towards defining itself and establishing priorities for its activities, according to the local characteristics of the epidemic and the specific interests and capacities of its members.

At the national level networks can develop a multi-dimensional perspective on the role of human rights, ethical and legal principles and practice, for example in securing the rights of people living with, and affected by, HIV/AIDS. They can advocate for appropriate social and legal reform, including the identification and promotion of guiding principles to be considered in all aspects of HIV policy. Networks can also advocate for improved services for people directly affected by the epidemic.

In this context, regional networks can support those working at national level by addressing regionally-specific issues and by working in partnership with national, regional and international networks in related areas. Regional networks can support the objectives of constituent country networks; stimulate exchange of ideas, experiences, and strategies across national networks and address issues of a regional nature such as trans-national drug trade, population movement and labour issues.

In formulating and promoting capacity building for addressing legal, ethical and human rights issues, HDP has conceptualised networks in a particular way, leading to an approach consisting of a number of distinct principles:

  • Capacity should be built at the national level
  • An approach to capacity building which does not focus exclusively upon institutions
  • The involvement and participation of a broad range of actors from different sectors of society to explore and address the complex issue raised by the epidemic within the given national context
  • Networks should be functional first at national level before regional networking can provide 'added value'

The importance of networks as an effective and efficient means of realizing sustainable development objectives is increasingly recognised. While the language and concepts of networks and networking have gained increasing currency through their ‘virtual’ contexts, nonetheless, networks for fostering social change are more than virtual entities: they are social, economic and political arrangements which, at best, enhance capacity and promote collaboration amongst various groups towards the achievement of concrete goals.

There is also a growing recognition of the critical importance of local responsibility for creating and sustaining networks and of the 'added value' which effective networks lend to individual action by providing platforms for shared experimentation and learning across sectors, geographical boundaries, professions and cultures.

Yet there is still much to be learned:

  • about how networks can be catalyzed, strengthened and supported,
  • about their composition, management and financial support needs, and
  • about how they can be self-reflective, learning mechanisms which complement more traditional instruments such as human resource and institutional development.

In particular, there is a need for more systematic information and deeper analysis in order to understand what "success" and "failure" might mean in relation to networks.

 

5. Supporting Regional Networks

HDP has supported networks in three regions - Asia, Africa, and Latin America. This section provides a narrative account of each network's context, purpose, functions, results, and difficulties encountered. The material upon which this section is based comes from field visits conducted in mid-1999 and early 2000 and provides at best ‘a snapshot’ of a moment in the history of these networks. Undoubtedly things will have changed since then. The subsequent section identifies some of the key lessons learned from this ‘snapshot’.

Asia and the Pacific

An Inter-country Consultation on Law, Ethics and HIV 8 was held in Cebu, Philippines, 3-6 May 1993 organized by HDP. This meeting brought together most countries of the Asia-Pacific region. Participants adopted and endorsed a Statement of Belief which included a call for the active participation of people affected by the epidemic, as well as the building of partnerships amongst communities, governments and the legal, health and other professions. Participants also agreed upon a proposal to establish a Network within the region in order to address the legal, ethical and human rights dimensions of the epidemic.

As follow-up, the UNDP regional project on HIV and development worked with the Center for Economic Policy Research and Analysis (CEPRA) at the University of Colombo, Sri Lanka, which was funded to create a regional network of committed individuals and institutions in relation to legal, ethical and human rights issues. A full-time staff member was included in the project. UNDP conducted three regional training workshops on HIV law and law reform in Colombo, Sri Lanka, Beijing, China, and Nadi, Fiji and supported a meeting in Bangalore, India, organized by the Indian Law Institute. The reports and papers of these workshops have been published and widely disseminated in the region. A newsletter was produced by CEPRA, partnerships formed (especially at the national level in Sri Lanka) and several publications produced by the project for dissemination throughout the region. 9

At the same time, at both regional and country levels, UNDP was beginning to work increasingly with NGO groups such as the Lawyer’s Collective in Mumbai, India, and Alterlaw in the Philippines. Both are groups of lawyers who were working on human rights cases and who became involved with HIV issues because of the persistent rights violations associated with people living with HIV/AIDS. Most of the cases undertaken are pro-bono thus no fees are paid by those who lodge complaints.

During 1997, the regional project undertook an assessment of the UNDP-funded work which had been undertaken by CEPRA. The assessment suggested that while impact had been achieved in Sri Lanka, the goal of a regional and self-sustaining network was yet to be achieved. The project held a stocktaking and planning meeting with participation from UNDP Country Offices, UNAIDS, and individuals from different countries and groups in the region, including lawyers’ associations, universities, associations of PLWHAs, and judiciaries. The meeting produced a framework for action consisting of five components:

  • Contextualization and translation of rights and standards pertinent to the HIV problem
  • Systematic development of a critical mass of individuals committed to ethics, law and human rights
  • Empowering people living with HIV and those vulnerable to infection
  • Analysis and evaluation of advocacy tools

Building capacities of individuals and organizations to become advocates and activists; and moving towards a common vision and direction for concerted action. 10

 

Africa

During 1992/3 the UNDP global programme supported a series of preparatory activities in seven African countries. In October 1993 a planning meeting was held in Accra, Ghana, in order to establish a regional network on ethics, law and HIV and to organize a larger inter-country consultation. Follow-up missions were held to help prepare for the consultation and to clarify the memberships and objectives of national networks. At the inter-country consultation held in Dakar, Senegal, in June 1994, the African regional network was launched. The Dakar Declaration of Principles was issued defining a legal and ethical framework for an effective and compassionate response to the many difficulties associated with the HIV epidemic. The declaration has since been used as a tool for advocacy and as a reference for national networks and other groups.

Following the Dakar meeting, national networks turned their attention towards creating an enabling environment. Two new national networks were launched in Central African Republic, and South Africa joining the existing group of seven countries. At the same time the UNDP regional project in Dakar began to assume the role of coordinating some of the activities of the regional network, and of organizing country-to-country technical assistance to help launch new networks and to strengthen existing ones. Following a meeting of the network in Kampala, Uganda, and at their request, the regional project hired a full-time staff member to focus on the support of the network. This intensified support resulted in the formation of five more national networks, publication of a regional newsletter and identification of additional financial support from partners including UNAIDS and GTZ.

At the national level, networks began to gain visibility and to attract support from donors including UNICEF, UNDP Country Programmes and UNAIDS. Participation in regional and international conferences raised the visibility of the network and drew attention to these issues.

Impact deriving from national networks has included:

  • In Kenya, sensitization workshops and articles written for the local press on the law and HIV
  • In Uganda, the expansion of the national network to several regions in the country, publication of a newsletter, initiation of a comprehensive review, in collaboration with the government, of legislation with a view to amending laws to prevent the further spread of HIV and discrimination against those already infected
  • In Democratic Republic of the Congo, the network has conducted surveys on attitudes among employers towards people living with HIV/AIDS, and on the extent of women’s ability to protect themselves against HIV infection. Follow-up surveys indicate positive changes among both groups.
  • In South Africa, the national network has been extended to nine of the country’s provinces. Network members have lobbied successfully for a new HIV policy in prisons and have contributed to a recent government decision to abolish HIV screening as a prerequisite for employment in government service.

 

Latin America and the Caribbean

HDP has provided extensive assistance in the initiating phase of the Latin American and the Caribbean Networks on Human Rights, Ethics, Law and HIV. This has included support for the regional planning process, for the attendance of regional participants at meetings of the networks in other regions, and initial seed money to national networks to assist in their establishment. To this end, members of LACCASO have participated in two regional meetings in Africa and in Asia/Pacific.

Following participation in the Asia and the Pacific meeting, a planning meeting that included representatives from LACCASO, PAHO and UNDP was held in New York, 30-31 March 1994, to consider the establishment of a similar network in Latin America and the Caribbean. Participants attended from Costa Rica, Mexico, Nicaragua and Venezuela. This meeting identified the following issues as among the most pressing in the Latin American and the Caribbean context:

  • Discrimination
  • Breach of privacy and confidentiality
  • Stigmatisation and defamation
  • Medical and social research ethics
  • The impact of HIV on indigenous peoples
  • Long-term travel restrictions for people living with HIV/AIDS
  • Issues pertaining to vulnerable groups: including people in prisons, men who have sex with men, and minority groups generally
  • Issues pertaining to the protection of women and children

This resulted in a pilot phase to explore the possibility of establishing national networks bringing together lawyers, legal activists, advocacy groups, educational representatives, NGOs, and people living with HIV/AIDS in order to address these issues and to identify an integrated response to the epidemic. During this phase, participants agreed to serve as focal points for the networks within their own countries and to facilitate the establishment of similar networks in other countries in the region. Priority was to be given to those countries where there was awareness of the importance of these issues, where groups and individuals were active and interested in participating, and where there was national commitment. An HDP sponsored training workshop was held in early 1995 and included many of the key actors from Latin America and the Caribbean in order to build capacity and promote understanding of the development issues which networks were likely to face.

UNDP/HDP, PAHO and LACCASO agreed to field exploratory missions to Argentina, Barbados, Brazil (Recife and Sao Paulo), Chile, Colombia, the Dominican Republic, Ecuador, Haiti and Honduras as a second stage of activities. These countries were identified as possible network participants.

Acción Ciudadana Contra el SIDA (ACCSI) from Venezuela and Colectivo Sol from Mexico were invited to conduct exploratory missions to Brazil, Argentina and Barbados in order to explore interest in, and to examine the feasibility of, establishing national networks. These exploratory missions assisted in the identification of facilitators, participants and resources for national networks, as well as organisations and individuals to function as catalysing focal points for future national networks.

Since 1995 some 5 countries are participating in a major network, addressing the ethical, legal and human rights dimensions of HIV/AIDS. HDP has provided training and support to these networks, especially in Argentina, Brazil, Paraguay, Mexico and Venezuela; has monitored technical assistance and funding needs and has begun the process of documenting the development of these networks. Inter-regional exchanges of experience have also been encouraged and facilitated by UNDP via training workshops, seminars and other means.

HDP has also provided technical advice to national governments, e.g. Nicaragua and Paraguay, on proposals for HIV-related law reform and a process of HIV law reform has been undertaken by the network in Nicaragua. 11

UNDP’s development partners (including the UN Commission on Human Rights, the European Community, NGOs, UNAIDS) have expressed interest in this approach to networking. Efforts are underway to identify additional resources to strengthen and expand country and regional networks and to enhance the capacity of the institutions within the region with which UNDP has been working.

During an Inter-agency Strategic Planing Meeting on Ethics, Law, Human Rights and HIV/AIDS, Venezuela, 22-25 January 1997, HDP, in collaboration with LACASSO UNAIDS and other partners met to identify priority needs and short and long-term goals for the network. A proposal was developed to generate financial support from UNAIDS. HDP will continue to support the establishment of Networks on Human Rights, Ethics and Law, and to assist governments in implementing or reviewing current legislation on human rights and HIV-related issues. Groundwork has been initiated in Nicaragua, to an extent in Paraguay, and will be expanded to Honduras.

In the years since the launch of national and regional networks, with support from UNDP, a number of developments have taken place. From the standard setting perspective, the Office of the High Commissioner for Human Rights (OHCHR) and UNAIDS, following two international consultations, jointly published and launched the International Guidelines on HIV/AIDS and Human Rights. 12 Further, the UNAIDS Secretariat has collaborated with the Inter-Parliamentary Union (IPU) published and launched the Handbook for legislators on HIV/AIDS and Human Rights. 13 Both publications have been disseminated widely.

UNAIDS has also been working with the United Nations human rights machinery and advocating for the integration of HIV/AIDS-related human rights within these bodies. In this regard, inter-alia, UNAIDS published the Guide to the UN Human Rights Machinery for AIDS service organizations, people living with HIV/AIDS and others working in the area of HIV/AIDS and human rights;13 assisted the UN Commission on Human Rights in the drafting of resolution 1999/49 entitled The protection of human rights in the context of HIV/AIDS. This Resolution was adopted unanimously by the United Nations Commission on Human Rights and co-sponsored by 59 states from all regions.

Further, UNAIDS coordinated an annual theme day of the Committee on the Rights of the Child, held on 5 October 1998. Entitled "Children and Young People Living in a World with HIV/AIDS".

Training key national partners, namely, HIV service NGOs, human rights NGOs, political leaders, National AIDS Programme Managers, People Living With HIV/AIDS and staff of UN agencies has also been another focus of UNAIDS work, Regional consultations have been held in Brazil, Thailand, and Uganda and in Washington and Geneva on ethical issues arising in vaccine development. An ethical Guidance Document building on these consultations has been issued as UNAIDS policy paper. 15

Additionally, UNDP has approved a policy on Human Rights, which calls for integration within all programmes, ICASO has prepared materials for NGOs on the International Guidelines on HIV/AIDS and Human Rights, and APCASO is pursuing a programme of training and capacity building on human rights issues in the region.

 

6. Supporting National Networks

The Philippines

PLWHAs in the Philippines Today

The fact that no cases of PLWHA violations have been brought before the country's Human Rights Commission is not seen as proof that there are no problems.

Pushed by a combination of fear and shame, PLWHAs are electing not to stay in home communities where they believe they will be ostracised, not to apply for work where they believe they will be tested, and not to seek help from public medical facilities where they believe treatment is poor and staff uncaring and uninformed.

At the same time, PLWHAs are being pulled to Manila and the other larger urban areas as the only places where medical care and drugs are, in principle, available. In fact, medical care in urban areas is not easily accessible to most PLWHAs, for reasons of cost and staff discrimination. Drugs, even for opportunistic infections and pain, are too expensive for PLWHAs, most of whom remain unemployed. There is no protection against quack drug trials, PLWHAs are not clear what rights they have to full disclosure on the implications of these trials, or to protection from any harm they are caused through unethical practices employed.

Bernard, April 1999 Mission Report

 

A 1999 UNDP mission to the Philippines highlighted the contrast between the current situation in terms of the response to the HIV epidemic and that which existed in 1992 when HDP first initiated activity in the country. At that time, with the exception of Thailand, no Asian country had reported significant levels of HIV infection, and few governments saw the epidemic as a priority issue. More significantly, ethical and legal issues associated with the epidemic were little discussed. While there was emerging concern among NGOs about discrimination against people living with HIV, there had not yet been very many opportunities to debate these issues and consider strategies for addressing them.

It is within this context that UNDP stimulated interest in networking on ethical, legal and human rights dimensions of HIV/AIDS through the Inter-country Consultation on Law, Ethics an HIV, in Cebu, in 1993. 16 A number of key actors from the Philippines participated in this Consultation and later came together in an informal network, including:

  • The manager of the Department of Health AIDS Programme,
  • Alterlaw, a lawyers' collective (which was forging regional links with the Lawyers' Collective in Bombay and with Pink Triangle in Malaysia),
  • Kabalikat, an NGO working on HIV, which was beginning to collaborate with Alterlaw,
  • A representative of the human rights desk of the Integrated Bar of the Philippines.

The diverse skills and interests of these and other partners were drawn together by the Philippines National AIDS Committee in its working party on legal and ethical issues. Each network member brought specific resources and expertise to the group. Their work resulted in the passage of the "Philippines AIDS Prevention and Control Act of 1998", and contributed to the development of an enabling environment within which responses to the epidemic could be formulated. Significantly, with the passage of the law, the need for networking also seemed to pass. The decline of this network could be attributed to the following:

  • A change of actors: the National AIDS Committee was replaced by a new Philippines National AIDS Council, which was recognized as an official body by the new Law, with 19 government departments and agencies, and 7 NGOs. Some NGOs were critical of the process that led to the selection of Council members, and observers noted that these appeared to exclude those groups which were most active on the issues. There was also a change of leadership at the Health Department's AIDS programme, possibly leading to less open and cooperative relations with NGOs.
  • The sense that, with the passage of new legislation, the important work had already been done and there was no need for continued interaction and support.
  • Burn-out amongst network partners or decreasing conviction of the value of participation in the network given the additional time and effort required, over and above each member’s day-to-day work.

Whatever the reasons, the end of a network does not necessarily signify ‘failure’. The flexibility inherent in a networking approach implies that networks can be formed and disbanded as the need arises: networks should not be formed or sustained for their own sake. However, the need and demand for action on ethical, legal and human rights dimensions of the epidemic persist and grow with the passage of time. One example is the task of ensuring the systematic and comprehensive application of the new law at all levels and in all sectors.

"We believe that the law must promote an environment that enables, encourages and sustains voluntary behaviour change and the care and support of those affected. This requires the empowerment of individuals and communities to protect themselves against HIV, and that people living with HIV remain integrated within society and free from all forms of discrimination….

"We believe that the development of effective responses to the HIV epidemic requires, above all, the active participation of people affected by the epidemic, as well as the building of partnerships amongst communities, governments and the legal, health and other professions."

From the Statement of Belief adopted at the Inter-country Consultation on Law, Ethics and HIV, Cebu, Philippines, May 1993

Some of the demand was being met by Alterlaw, which was providing support 17 for a large number of HIV legal advocacy training projects, within the Philippines as well as in other countries in the region. On the other hand, at least in 1999, it appeared that NGOs working on HIV still did not tend to address legal and ethical dimensions of HIV. By contrast, human rights NGOs continued to focus their work mostly upon civil and political rights, to the exclusion of economic, social and cultural rights, an approach mirrored by the country's Human Rights Commission.

Given the increasing recognition of the multi-sectoral nature of the causes and consequences of the epidemic together with the need for inclusive and expanded responses, the level of current need in the country, existing capacity and wealth of experience of networking in the region, a network on legal and ethical dimensions of HIV/AIDS may still have value, for example in facilitating exchanges of information and experience. In this way, lines of communication among stakeholders could be kept open until such time as the specific need and opportunity arose for more organised capacity-building activity. A number of NGOs were planning to suggest to the National AIDS Council that a sub-committee be established which could reach out more broadly and informally to a wider range of actors than those currently represented on the Council. The mission concluded that such a network would have the potential to succeed. It would be a response to a real situation: value the diversity of social relationships and have immediate benefits, including inputs to the Council's strategy.

 

Uganda

We, the participants at the Intercountry Consultation of the African Network on Ethics, Law and HIV, affirm that any action, whether personal, institutional, professional or governmental, in response to the HIV epidemic, should be guided by the following principles:
  1. Responsibility…
  2. Engagement…
  3. Partnership and consensus-building…
  4. Empowerment…
  5. Non-discrimination…
  6. Confidentiality and privacy…
  7. Adaptation…
  8. Sensitivity in language…
  9. Ethics in research…
  10. Prohibition of mandatory HIV testing…

From the Dakar Declaration, 1 July 1994

 

Uganda is increasingly identified as a ‘success’ in terms of its national response to HIV/AIDS. Explicit political commitment from government, understanding of the multi-sectoral dimensions of the epidemic, attention to issues of discrimination, and work at the community level, are all cited as important ingredients of this success. In short, critical elements of an enabling environment exist in this country.

The Uganda Legal and Ethical Network (UGANET) was established in 1994, following a series of in-country consultations and an Inter-country consultation sponsored by UNDP which was held the same year. 18 At the time of its formation, UGANET had no formal structure other than a task force which oversaw the activities conducted on a voluntary basis by members. Meetings were held in the members' own offices. Soon after its establishment, the task force reached a decision that the Network could not possibly function effectively within such a loosely defined structure. 19 UGANET therefore registered as an NGO and established a permanent secretariat, with an elected chairperson and secretary. In early 1999, it had a membership of approximately 70 organisations, a task force of 19 people to oversee activities, and a salaried 6 person secretariat (although funding was precarious). Membership was broad, comprising organisations and individuals representing the law, medicine/health, people living with HIV/AIDS, HIV/AIDS-related NGOs, human rights organisations, religious bodies, academics, governmental structures, and traditional practitioners. The task force met approximately once a month, and operated primarily through six sub-committees focusing respectively on: programme development, editorial, advocacy, finance, research, and international public relations.

UGANET came into being in an environment already rich in NGO networks, 20 many of which contributed to its membership and activities:

  • The National Guidance and Empowerment Network of People Living with HIV/AIDS in Uganda (NGEN+) comprises 16 sub-networks, 15 district-level groups and a separate group for army personnel. At all levels, PWA members are encouraged to "make the network behave like a family circle", to offer each other fellowship, a sense of hope, and information. Training is provided on a range of issues, from how to care for those who become ill to how to prepare funding proposals. NGEN+ strengthens its constituent base by reaching out proactively to communities in order to urge PLWHAs to "come out", pointing out that NGEN+ members are living successfully with HIV disease through better access to health-related options and mutual support.
  • The AIDS Support Organisation (TASO). This well-known organisation began spontaneously as PLWHAs recognised the value of coming together for mutual support, information sharing and financial assistance. TASO is now established nation-wide and engages in advocacy for more HIV-sensitive policy development and legal change.
  • AIDS Information Centre (AIC) - including the Post-Test Club and the Philly Luttaya Initiative (PL Initiative). Begun in 1990, this is an important resource in the Ugandan national response. AIC has an extensive testing and counselling service in and around Kampala with outreach to rural areas. Voluntary testing is promoted as a critical route towards counselling and mutual support. The latter task is the focus of the 4,000 member Post-Test Clubs and the PL Initiative, a support and information network of people have been HIV tested (both positive and negative) and named after the much-revered Ugandan advocate and self-proclaimed PWA who gave a human face to HIV/AIDS in the country.

A number of government partners also interact with UGANET. They include:

  • The Uganda AIDS Commission, (UAC), established specifically to support the government's commitment to a multi-sectoral approach to the epidemic, moving away from a narrow health focus towards broader cross-ministry collaboration and partnership. Being based in the office of the President gave the Commission high political profile and commitment, and direct access to the President. It should be noted however that in mid-1999 efforts were made to relocate the Commission to the Ministry of Health.
  • The Human Rights Commission is a new organisation but already it is addressing a broad spectrum of human rights issues, including HIV/AIDS (unlike its counterparts in the Philippines and Kenya). While it is not an official member of UGANET, its Chairperson and senior research officer participate as individuals.
  • The Uganda National AIDS Control Programme (NACP) is the technical arm of the STI initiative based in the Ministry of Health. It is the largest HIV/AIDS initiative in the country with programmes implemented from national to local levels. Like the AIDS Commission, the NACP promotes a multi-sectoral approach. UNDP funding enabled creation of specific NACP positions in several key line ministries, including Justice, Defence, Police, Prisons and others, to assess and take preventative and remedial action on the epidemic as it affects their respective staff and client populations. This has included some collaboration with UGANET on legal and ethical dimensions, for example, ensuring proper protection of army personnel who participate in vaccine trials and developing draft guidelines on HIV in relation to prisoners' rights.

Against this background of rich and diverse experience, UGANET's comparative advantages include the fact that it advocates action in an area - legal and ethical issues - in which none of its partners are working in a wholly systematic way. In addition, its nationwide reach is valued, as is its capacity to work with a range of stakeholders, from PLWHA groups to the President's office, government departments and donor agencies.

Prior to 1998, the Network made a major contribution to the drafting of a variety of bills including those on domestic relations, defilement, commercial law, and the health act. In addition, it helped in the application of the law, for example, working with the Ministry of Public Service to review policies on recruitment, non-discrimination in the workplace and access to training, the Network expects to collaborate further on monitoring application issues. The Network is perceived as having contributed to a more enabling environment for the legal and ethical dimensions of the epidemic, creating awareness of the need for protection and reviewing legal reforms for HIV sensitivity, for example, contributing to the working to propose a law allowing a woman who has lived for two years with a man to inherit the property after his death.

From 1998, UGANET's activities were focused on the area of capacity building at district level through 3-day sensitisation workshops implemented in 20 districts Uganda and on the production and distribution of the newsletter.

The first phase of the Network’s existence was funded almost entirely by UNDP in Kampala. This funding enabled the network to establish a secretariat and implement a number of activities. During the second phase (from 1997 to 1998), the World Bank/Government of Uganda STI (sexually transmitted diseases) Programme provided funding.

According to partners and Network personnel and members, the areas in need of further strengthening and development include: securing more direct participation by PLWHAs, greater investment in the capacity of network members to participate in working towards the network's objectives, participatory development of a focused agenda and a more effective managed structure. In March 1999 UGANET held a Strategic Planning Workshop in the course of which a number of important issues were considered:

  • The network's comparative advantage and programme of work. Possible options to be explored include a focus on policy-level advocacy or a concentration upon a specific and narrow action-oriented programme, such as establishing community legal and ethical information centres. One pressing area is systematic assessment and analysis of how human rights and ethical issues are evolving in Uganda and whether this is improving or deteriorating, generalising or localising? Are contemporary issues becoming less specifically 'legal' in nature, more intractable? For example, what is the current perception of the issue of women living with HIV/AIDS having children, of the circumstances in which children should be tested, of how communities respond to those who 'irresponsibly' infect others. These kinds of questions could be better identified and explored through a body forum such as UGANET. The Network could also provide sensitivity training to the more than 20 human rights NGOs which, while not yet specifically engaged with the epidemic, could contribute significantly to these very issues through their activities. Another area for potential development is engaging and supporting local agencies, resource persons and other 'gatekeepers' to consider specific, relevant areas of law and ethics, for example with respect to traditional practices e.g. circumcision, wife inheritance and care of orphans.
  • How can UGANET work more effectively with PLWHAs? An inherent dilemma for the network is determining how it can reach out from national to local levels at the level of formal law, but also work to create a community of members based upon local, and informal legal-ethical concerns. Some PLWHA networks perform this latter function very well, suggesting the possibility of UGANET finding ways to form linkages with them, a network-of-network arrangements, without either losing its own identity.
  • Should the network attempt to create new structural arrangements in order to address additional goals? For example, the permanent Secretariat might concentrate upon developing a referral function, while one or more task forces could focus on advocacy and programme planning functions. The Network needs to find ways of building capacity within existing agencies and programmes: for example, by strengthening capacity in terms of understanding and application of legal and ethical issues as these relate to the daily work of these agencies; training in monitoring human rights abuses and appropriate ways of responding; or through skills transfer for resource mobilisation. In turn this raises the question of the extent to which the network serve as a capacity development mechanism (serving an inward-oriented HRD function for its weaker members) in contrast to building on the capacities of its stronger members in order to initiate outreach action (serving an outward-oriented support function for the broader community)? The focus and resource needs of the two agendas are different and each requires explicit planning, action and impact evaluation.
  • How can the Network reduce dependence on donor agencies and increase its ability to mobilise resources on a local basis? Consideration could be given to income raised from the Network membership, setting of quality standards for preparation of project proposals, and 'piggy-backing' on the resource base of existing services.

 

PLWHAs in Uganda

Amongst the issues faced by PLWHAs in Uganda are:

  • The medical system's unwillingness or inability to take the epidemic seriously, leading to limited access to drugs, limited availability of testing sites, and few counselling services, and a denial of the right to effective health care.
  • Discrimination against PLWHAs in employment, housing and access to insurance, which exacerbates and is fed by the problem of poverty.
  • Limited ability of the system to protect the most vulnerable, e.g. children and youth, and inadequate attention to the at-risk situation of sex workers who lack education and consistent access to condoms.
  • Over-reliance on high levels of information about HIV/AIDS to reduce high-risk behaviours, especially of youth.
  • Insufficient knowledge among PLWHAs and others on rights with respect to testing, care, access to services, and a reluctance among PLWHAs to press for redress.
  • The ethics around mother-child transmission, now becoming an important mode for HIV transmission, e.g. how to balance protection and care of the mother with prevention of infection for the child, and the rights and responsibilities of the father.
  • The need to educate PLWHAs not just of their rights, but also of their responsibilities e.g. not to spread the infection and to engage, in so far as they are able, in the normal life of their communities.
  1. Bernard, June 1999 Mission Report

Kenya

The UNDP-supported Kenyan Legal and Ethical Network (KELIN) collaborated with a range of stakeholders on an analysis of the epidemic, produced as Sessional Paper No. 4 on HIV/AIDS under the auspices of the Ministry of Health in order to state Government policy and enable the Government to progress. The paper was never passed by Parliament and did not lead to new laws, policies or actions by Government. Despite the paper's recommendation of the establishment of a National AIDS Commission, this was yet to occur by mid-1999. KELIN and others continued to urge that the paper's recommendations be implemented, pointing to experience in Uganda as a positive model for the establishment of such a body.

KELIN's mandate focuses principally in the national, formal legal and policy sphere, and this is where its impact can be most readily seen, The chairperson is a well known Nairobi lawyer. The co-ordinator is also a lawyer. Together, with what appear to be their own domestic and international networks of contacts in senior positions of law, politics and government policy, they have given the work of KELIN a very sound formal law base. While KELIN has an active member of the PLWHA community within its core team (herself a founder of several of the main PLWHA support groups in the country), the network appears to have had less success in engaging with Kenyan communities of people living with HIV/AIDS. By mid-1999, KELIN had not yet acquired legal status.

 

PLWHAs in Kenya

The situation of PLWHAs in Kenya is marked by:

  • Insufficient availability of antiretroviral drugs and inadequate care and follow-up by doctors in administering them, as well as non-availability of medication for opportunistic infections and the high cost of health care.
  • A dramatic increases in the number of HIV/AIDS orphans and the lack of attention to assuring their basic human rights in terms of protection, care and development.
  • Lack of a comprehensive regulatory framework for managing the epidemic, although there are a few stand-alone actions, e.g. the Ministry of Health is reviewing the Public Health Act, and other agencies are considering the issue of insurance.
  • No established HIV/AIDS component in primary or secondary school curricula - a failure of perhaps crisis proportions considering the incidence among young people. Such efforts as are made by national and international bodies are uncoordinated and face opposition from those opposed to sex education in schools.
  • Lack of clarity around the HIV/AIDS core rights and protection issues for example in relation to confidentiality and testing, balancing this against the need for protection and prevention.
  • Another issue concerns growing public pressure for the criminalisation of "knowingly" infecting someone with HIV, without sufficient consideration of the negative implications of such legal action.
  • Lack of serious and comprehensive HIV/AIDS research, resulting in insufficient knowledge generally about the status and implications of the ethics of HIV/AIDS, and of these issues within the particular socio-cultural context of Kenya.

Bernard, June 1999 Mission Report

 

A number of non-governmental networks are active in Kenya. Key actors include:

  • The Kenyan AIDS NGO Consortium (KANCO) which began in 1989 as an informal network of a small number of NGOs working on HIV/AIDS. By 1994, the Consortium had become formalised with a secretariat, resource centre and long-term programme of work together with fairly consistent donor support. KANCO represents a useful example of the kind of time-line, incremental nature, and continuing reflection-revision characteristic of sound network development from the bottom-up. It has built itself on the basis of individuals and groups wishing to be involved and currently has a partner membership in excess of 600. KANCO engages with a wide range of actors (including government departments), and with an equally broad range of issues, including contributions to the Session Paper.
  • Women Fighting AIDS in Kenya was established in 1993 as women began to realise their need for counselling, home care services, help with income generating activities, training on how to access resources, and general mutual support. With funding from several sources, it works principally as a network, drawing on and providing resources in collaboration with a number of other HIV/AIDS support organisations - including KELIN, to which it sends referrals.
  • The Association of People Living with AIDS in Kenya is one of several HIV/AIDS support organisations in the country, all of which are relatively resource and capacity-poor, but nonetheless dedicated to the protection and care of PLWHAs basically through networking mechanisms. The Association is spearheading an effort by several groups to form an umbrella organisation to institutionalise their relationship, and better manage capacity and resources.

The Government created a Standing Committee on Human Rights in 1996 which acquired a Secretary and staff in 1999, seconded from the Attorney General's office where the Committee is situated. While HIV/AIDS is said to be an important dimension of the Committee's work, it had yet to appear among more than 4,000 complaints received by mid-1999.

Against this background, and according to feedback from partners, KELIN's principal strength lies in communicating the legal, ethical and human rights dimensions of the epidemic. This includes:

  • Addressing the right formal law issues, i.e. those perceived to be the most critical in terms of contributing towards an enabling environment. Through seminars for provincial and national court officials, for the Attorney General's Office and for the Law Society, among others, the Network has contributed to expanded knowledge on, and a more positive official attitude towards, legal aspects of the epidemic, and raising awareness of the need for practice guidelines pertaining to the treatment of PLWHAs.
  • Networking among lawyers at provincial levels, an important emerging resource base for referrals. However, it is not clear whether, or how effectively, these lawyers are able to educate local communities. KELIN's position is that it lacks the funds necessary to undertake systematic outreach training.
  • Providing most of the legal and ethical input to the Session No. 4 Paper, while it has been unsuccessful, like other NGOs, in mobilising action on the passage and application of the paper. Through its Chair, KELIN has been reviewing the guidelines which are included in the Paper and building a consensus among members of parliament for eventual application. KELIN believes that it has been able to convince the Attorney General of the need to develop HIV/AIDS-specific legislation, but has been told that without donor funding, the government is unwilling to move forward.

The most serious problems KELIN faces are lack of funding together with established secretariat and offices. While it has been possible to secure some funding from the UNDP Country Office on a 'per activity' basis, the Network has so far been unable to secure funding from other donors, either directly or through Government. Lack of a secretariat leads to difficulty in co-ordinating meetings and plans of work, and in collecting and exchanging information and training materials. This is leading to an overall sense that the Network is 'losing steam', unable to expand and extend its functions in a consistent way. KELIN has tended to focus at the level of formal law, without necessarily identifying and interpreting issues sufficiently well for communities and especially for PLWHAs to understand. One contributory factor has been the lack of funds while another has been the preponderance of lawyers and legal expertise among the membership.

One PLWHA group, for example, claims that none of the recommendations it made at the past several meetings had been acknowledged. It was felt that PLWHA were invited to the meetings but that these do not actually reflect their particular interests. It was felt that the membership was essentially superficial and the service provided unsatisfactory. The underlying issue appears to be that the Network is not perceived as a sufficiently reciprocal relationship.

In June 1999, KELIN decided to collaborate with KANCO on a forward looking assessment, exploring the following questions and issues:

  • How can KELIN establish a more visible and stable "presence"? Clearly, some form of secretariat structure is required. While a network can certainly operate well as a loose structure, nonetheless it requires a base, a focal point with whom members, users and wider communities can relate. A secretariat also helps to ensure that the concept of the Network amounts to more than, (rather than reducible to), its individual high-profile leaders. KELIN has also perceived the need to register as a separate legal entity, enabling it to set its own agenda, to solicit funding from donors and to involve new partners.
  • What is the network's comparative advantage? A number of PLWHA support groups claim they are already working in areas of ethics and law at the community level and that what they need from KELIN is information, analysis and referral backstopping. Others disagree, urging that KELIN reach out more in these areas. All acknowledge that KELIN is the only NGO at the level of national policy and law, and many perceive it to be the sole agency with the capacity to interpret from national level to grassroots, whether directly or through collaboration with PLWHA groups, government departments, local administration or the private sector.
  • What are going to be the core goals of the network? How will it balance between addressing the needs of communities and PLWHAs, and setting an agenda based on what it knows to be the gaps in the policy, legal and research/knowledge environments of HIV/AIDS in the country? Each goal requires somewhat different programmes of work, timelines, member expertise and resources. How could the Network work more effectively in partnership with traditional groups such as Associations of Elders which are also attempting to resolve friction arising from social ethics of HIV among community members? How could KELIN mobilise community reflection on the ways in which traditional laws and legal mechanisms could be brought to bear on HIV/AIDS issues?
  • How can KELIN develop the capacity it needs to network more effectively? There was broad consensus that the network needed to strengthen its own ability to reach out to a broader membership base, to be inclusive and to manage internal diversity. Several suggestions were made for workshops with resource persons coming both from Uganda and elsewhere in the region where networking experience has also been strong.

 

7. Lessons Learned for Sustainability and Impact

It seems fairly evident that the four networks have each helped to create more conducive environments for action on the HIV/AIDS epidemic. This is certainly a positive contribution to development, as defined at the beginning of this Guide. The networks' results have ranged from reforming the legal framework, to advocacy of the issues, provision of expertise, skills development and training, and learning and exchange of information and expertise.

The networks have also clearly built capacity, as defined at the beginning of this Guide: they performed a number of functions, and enabled members to set and achieve objectives. However, the extent to which the capacity developed has been sustainable in driving change from a non-conducive to a conducive environment is less clear. Moreover, the impact the networks have had is not commensurate with the scale of the epidemic. Even what could be termed as the most successful of all four networks - the Nicaraguan HR/Network - had difficulties in translated its main outcome, the legislation on HIV/AIDS, into impact on the lives of those affected.

Particularly in the case of Africa, as Kante et al noted in their Evaluation, where HIV/AIDS is spreading relentlessly, "We continue to witness increasing numbers of illegal and unethical practices directly attributable to the epidemic. The questions that need to be posed have to do primarily with a review of the efficacy of the networks at both the regional and national levels, and areas of support required by these networks to enable them accomplish originally stipulated objectives. These questions must necessarily address issues of conceptualisation, modes of operation, cultural groundedness, capacities (technical and financial), strengths of the network that can be built upon as necessary areas of growth, and the overall future development of the networks" (p ii).

What aspects of the network's functioning resulted in this mixture of strength and weakness? What are the conditions necessary for successful networks? Bernard's Asia mission report describes these as:

  • Purposes, procedures and membership are determined on the basis of a sound understanding of broad context;
  • A catalytic and committed "leadership", individual or group, is in place and is knowledgeable about the issues, able to identify key actors and ready to respond constructively and iteratively to windows of opportunity; and
  • Prospective members are facilitated in "buying into" the rights and responsibilities of membership.

Kante et al identified "certain key features which would be necessary for these structures to operate truly as networks", which included:

  • Common interest evolved out of a shared and deeply perceived need for action;
  • Extreme clarity of objectives and focus of network;
  • Volunteerism and commitment;
  • Injection of external resources by the network members for the benefit of the network;
  • Benefit derived by all members from their association with the network; and
  • Strictly non-hierarchical.

To what extent do the four networks reviewed meet such criteria? This Chapter draws on the experiences of the four networks in eight areas: need; level; purpose, goals and functions; membership; leadership; structure; resources; communication; monitoring and evaluation; and roles of donors. The eight areas are not intended as a checklist for development practitioners or network members, but rather issues to address in supporting, establishing or managing a network as a mechanism to achieve development goals. Each section concludes with a list of questions to be addressed regarding each issue.

a. Need for a Network

The first issue to be addressed is whether there is need for a network. In this regard, it is worth recalling the simple yet powerful statement in ICASO's HIV/AIDS Networking Guide: "Those of us who are involved in HIV/AIDS work network because the problems that we are trying to address are too large for any of us as individuals or organizations to face on our own" (p. 1).

There is no question that the legal, ethical and human rights dimensions of HIV/AIDS are a "large problem", as can be seen from the issues faced by PLWHAs in all four country contexts. Moreover, evaluation and other reports about the experiences of the UNDP-supported networks revealed that, even in the case of the least successful of the 38 networks, they were the only voices raised about this problem.

Bernard described efforts to deal with these issues in Asia as "embryonic". Kante et al stated, "The networks on ethics, law and HIV are the only bodies at country level currently attempting to address issues pertaining to the human rights of individuals as well as redefine the legal/ethical environment in the wake of HIV/AIDS". Thus, in promoting and supporting the establishment of these networks, UNDP had identified a clear need that was not being addressed.

Was a network an appropriate mechanism to address this need? Again, the answer is yes.

  • First, the number of partners that had to be brought together was extremely large, diverse, and multi-level. Even UGANET in Uganda, which involved 70 organisations covering law, medicine and health, HIV/AIDS as well as human rights NGOs, religious bodies, academics, government bodies, and others, was found to have not sufficiently involved PLWHAs.
  • Second, the network mechanism made it possible for a range of expertise, experience and professional responsibilities, reflecting the main health, human rights, legal and HIV/AIDS knowledge sites of a country, to come together in a relatively formalised and sustained way to create a new paradigm.
  • Third, a network made it possible to define tasks, take action, and move on to other tasks, as well as to evolve membership in line with changing needs.

Questions regarding need: Is there a real need to be addressed? Does a network mechanism fit the task?

 

b. Level

The experience of the four networks showed that the national level was an appropriate one at which to form the networks. However, the attempt to establish regional networks was unsuccessful in the case of both Asia and Africa. In both cases, UNDP had established regional projects with salaried coordinators to, inter alia, support the initiation and management of national networks, providing technical assistance and funds, as well as support to regional network coordination. The Asia regional project was head-quartered in Sri Lanka, while the Africa regional coordinator was most recently based in Uganda.

An evaluation conducted in 1997 of the Asian regional network found that impact could be noted in Sri Lanka, but that the goal of a self-sustaining network throughout the region was not achieved. As for Africa, in 1997 15 country networks came together for a strategic planning meeting, and decided to set up four sub-regional networks as a way to address the fact that the regional network was not functioning as envisaged. Each of the sub-regional networks would address a specific issue, and cover a number or countries. However, this arrangement also did not function, and Kante et al suggested in their Evaluation that these be "abandoned" due to lack of "human and material capacity".

Experience shows that sub-regional or regional networking on certain issues is likely to be successful when strong national networks exists. As Bernard put it "Any networking at supra-national level (regional or sub-regional) will be sustainable only to the extent it builds on a base of national capacity and priorities. Even then, it may flounder if the benefits it brings to members are less than the energies required to make it work. Any intervention to support networking at regional or sub-regional levels has three main modes of entry: find ways to strengthen and/or extend the mandate of existing networks; identify strong national actors and facilitate their coming to see value to their own work in sharing at a more generalisable level; begin farther back in the process, and promote local networking capacities in the selected issues, trying gradually to introduce one to the other toward the eventual development of some form of network-of-networks arrangement".

Questions regarding level: At what level does the network add most value: local, national, sub-regional, regional? Are national networks strong enough to establish a sub-regional or regional network? Do they see advantages in doing so?

c. Purpose, Goals and Functions

The four networks had multiple purposes and goals and performed multiple functions. After some five years of experience, Network members believed that clarity around their primary purpose and goals would help to identify the functions to be performed, how to organize the network and what resources to secure.

For example, the Uganda Network UGANET had initially defined five objectives:

  • To strengthen collective and institutional capacity in responding to HIV/AIDS and to enhance sharing of experiences, resources and information on HIV/AIDS.
  • To promote advocacy against obstacles to the prevention of the further spread of HIV and to empower communities through provision of legal information, assistance and training.
  • To actively participate in the development of an appropriate policy framework, programmatic approaches and strategies related to HIV/AIDS and to contribute to law reform programmes in Uganda.
  • To encourage the elimination of all social and cultural practices that hinder efforts to prevent the spread of the HIV epidemic and to encourage positive social and cultural practices that promote HIV/AIDS prevention.
  • To co-operate and collaborate with national, regional and international networks and all organisations, both in the public and private sector.

Similarly, KELIN in Kenya set out a number of objectives at the start, which included legal and ethical education at all levels, protection of the legal rights of PLWHAs, data collection on the status of legal and ethical AIDS issues, liaison between NGOs and the Government, and input to policy and law making.

As was noted by UGANET members at their strategic planning workshop and in other fora in mid-1999, there was a need for focus - either policy-level advocacy, or action-oriented programmes for the community, or systematic assessment and analysis, or capacity-building. KELIN members also reviewed their options in mid-1999 and discussed clarity around their core goals: should they address the needs of PLHWA communities, or the gaps in the policy, legal and research environments? Each of the goals identified by the two networks implied different programmes of work and timelines, member expertise and resources.

The Nicaragua HR/Network had set itself a very clear task at the start: the passage of a law on HIV/AIDS. However, after the law was passed, it was not institutionalized and applied (as was the case in the Philippines and Kenya). In discussions in early 2000, the HR/Network reviewed a range of objectives from which to choose to advance the process. Should it become a lobby group, or focus on outreach to the communities to communicate their rights under the new law?

The above discussion is not intended to imply that a network should have only one goal. Rather, that there should be clarity regarding the primary purpose for which the Network was established, and the recognition that different goals may require different arrangements: task forces can be set up by the Network to address each defined goal; networking with institutions or other networks can provides ways to address different goals.

The process of identifying goals and functions must also be closely related to efforts to understand the country context and, within that, the roles played by other actors, who should participate in the discussions. For example, it is clear from the experience of the two African networks that their work at the level of formal law was useful, but it was not immediately related to the lives of PLWHAs.

As Kante et al put it, "There was a particularly strong divergence of views in Uganda between the network on ethics, law and HIV and the networks of people living with HIV/AIDS. There was clearly a feeling that the focus of the network and the issues addressed by it were not reflective of the reality in the country. Additionally, in spite of the numerous district training programmes undertaken by the network, there was still no infrastructure in place to address the real issues faced by ordinary Ugandans in rural communities. Furthermore, the use of already existing infrastructure (however informal), such as networks of PLWHA for instance, and other support organisations (e.g. TASO) had not been incorporated into the network’s plans for expansion and growth in areas of the country where the real impact of the epidemic was increasingly becoming more devastating" (pp 22-23).

The fact that none of the four networks were able to translate the laws or rulings they had helped to pass into impact on people's lives, implied that a set of functions had not been considered at the outset, such as outreach to the communities to inform them of their new legal rights and how to secure them, or training of judges and lawyers in the new aspects of the law.

Questions regarding purpose, goals, and functions: What is the network's comparative advantage? Is the purpose clearly stated and agreed to by members? Are too many goals being considered? Can the network establish the right mechanisms to address each goal? Do other bodies have the same goals? Is there clarity around the terms "purpose", "goals", and "functions"? Are the proposed functions being performed by others? Have the most important stakeholders participated in setting the purpose, goals, and functions? What avenues exist for feedback from beneficiaries?

d. Membership

Clarity around purpose, goals and functions helps to define the membership of a network, and what skills and experience are needed. As Bernard noted regarding the two African networks, "It is a major strength and a major weakness of both networks that the range of their potential agendas is very wide - from matters of constitutional law through to norms of traditional culture; and so, too, is their range of potential front-line members - from rural community-level PLWHAs living in poverty and without either education or a platform of action, through to influentially well-connected, sophisticated and articulate lawyers and political activists".

In fact, an important issue that needs clarification is whether individuals and institutions are network members or beneficiaries. If individuals or institutions are members of the network, then they will need to: bring the skills and expertise necessary to address goals and perform functions, as well as find value arising from their membership.

"Members of a network are the network. If members do not have the knowledge and/or skills necessary to do the work of a task-based network, the logic for their expending the effort and commitment needed to make a network work will be lost. Networking is a voluntary arrangement. People may become members because they are invited; they will stay members because they see in the association a way to realise specific value to themselves and/or to the goals they are trying to achieve. The better the match between the goals and working methods of the network, and the aspirations and capacities of its members, the more sustainable and successful the association will be. The HR/Network has been particularly successful in this regard. During and even after completing the task of drafting the AIDS law, it appears to have been able to attract and keep as an appropriately strong membership because it has allowed them to find their own space for participation and to realise immediate and direct benefit from their association. According to several, they were able to learn from each other" (Nicaragua mission report).

If individuals and institutions are beneficiaries of the networks, then convenors need to establish whether the network does indeed meet their priority needs, and to find ways for the beneficiaries to articulate these in a way that reaches network members. According to one successful PLWHA network in Uganda, "Networks work when they can approach people where they are, appeal to their most pressing concerns and address their felt needs".

Knowing how to handle the different needs of members, beneficiaries and fellow travellers makes for a successful network. As the manager of Ugandan AIDS Control Programme put it, "They don't even have to be members as such - agencies like the police would find it difficult to join. But a network can bring these institutions together, put the situation on the table and then help them work through how they can move. Each will then work out responses which suit itself, but are coherent overall. The network co-ordinates, facilitates and advocates, and different organisations can access its agenda in their own ways. In this way, the network can be as wide as the problem is, day by day".

The flexibility inherent in networks also means it is possible - indeed necessary - to change members to meet changing needs and agendas. In the case of the HR/Network, "Members continued to be purposively and personally selected. Criteria were expressly qualitative. Less concerned with formal position, geographic representation or numbers, individuals were identified on the basis of their 'fit' to the goals of the proposed network: specifically, their ability to influence public policy; their proven commitment to human rights; and their readiness to be open, to collaborate and to share their learning. Each brought expertise. Besides providing the convening function as secretariat, the Foundation brought a comprehensive knowledge of HIV/AIDS".

Questions regarding Membership: Do members have the right skills and experience? Are they primary contributors to the network or primary beneficiaries of the network? If they are contributors, what value does the network add to their day to day work? If they are beneficiaries, what avenues do they have to make their real needs known to the network? What do they get from the network that they cannot get elsewhere? What do they contribute to the network that no one else can? In cases where the network has evolved its goals or tasks, do member skills and experiences still fit?

e. Leadership

As in any area requiring change, leadership is critical. UGANET, for example, believes that its capacity to carry out its programme has been due to very powerful leadership, the individual commitment of team members as well as the good will it has generated amongst key partners such as the Uganda AIDS Commission and the Ministry of Health.

Networks are not easy to lead, and the kind of leadership necessary will depend on the network's purpose and functions. For example, a simple convening and facilitation role is appropriate to an information exchange network. The more ambitious the goals, the more complex the leadership role required. An advocacy network will require leaders well able to articulate the issues and to mobilise constituencies.

Networks undertaking specific tasks need even more "delicate handling". On the one hand, there has to be enough direction to keep members on-track and the action moving. On the other, enough room has to be created to let members use their expertise and build the relationship in ways they feel appropriate.

In the case of the task-oriented HR/Network, the Nimehuatzin foundation served as leader, co-ordinator and member: "The nature of the leadership provided to the HR/Network has without doubt been the key both to its formulation and to its success. Particularly relevant to the limited structural cohesion available in a network and, in this case, to the very busy schedules of members, the ability of the secretariat to facilitate learning and promote inclusion were important. It brought, according to several, a sense of rigor, discipline and 'an obviously informed and persistent commitment' to all activities; 'the Foundation did its homework'.

"Meetings, for example, were held on a regular basis and, according to members, were well-organised: with advance agendas, assigned tasks, consistent follow-up, and meeting minutes which were 'taken to each member for confirmation and comment'. Members were made to feel effectively involved and informed; and that good use was made of their time". In short, the Foundation "led by the quality of its input rather than its control over the process". (Bernard)

Questions regarding leadership: What leadership skills do the network's stated purpose, goals and functions require: defining a vision, articulating aims, mobilising constituencies, arbitrating differences? What managerial skills will help provide leadership: facilitating processes, enabling members to contribute, ensuring programmes remain on track?

f. Structure and Resources

All four networks reviewed had a core: a non-governmental foundation in the case of Nicaragua, the government-sponsored National AIDS Committee working group in the case of the Philippines, and a secretariat and chair in the case of the Uganda and Kenya networks.

As the manager of the Ugandan AIDS Control programme noted, "You don't need a very large structure; you need a full-time core group, some form of secretariat, which is able to organise core issues and then draw from existing expertise on an issue by issue basis. It should be able to have an eye on the ground, to do analyses, to bring people together and harmonise their expertise. It needs to be interdisciplinary. And it needs to let those who are its members feel a sense of belonging, a closeness with the problem. Otherwise, they will feel coerced when asked to do something for free. The key is to be spontaneous as new issues emerge, and members need to feel able to bring these in as they evolve".

That said, the experience of the four networks shows that, contrary to what might be popular perception, some structure is needed to support even informal exchanges. A balance needs to be found between too loose a structure that drains potential and continuity, and too heavy a structure that stifles initiative and innovation. Certainly, having too many goals may result in a top-heavy structure that needs serious funding, which may not be forthcoming.

More importantly, the experience shows that a network needs its own resources, over and above what is available to each network member. In the case of both African networks reviewed, evaluators agreed that they needed "external resources if they are to move effectively toward changing and renewing their mandates. At the moment, both networks are running on little more than the voluntary energies of a few core staff, and it is unrealistic to think this is enough to do much more than keep the issues on the policy table" (Bernard).

Kante et al also found the networks they reviewed to be so under-resourced as to be unable to deal with the problem at hand. While UNDP provided seed funding and support for capacity development. In some instances UNDP resources were allocated on a project-by-project basis and did not cover core costs. The Uganda network was better resourced than the Kenya network, one factor making it possible for UGANET to achieve so many positive results (another factor is the more enabling environment in Uganda vis a vis Kenya). However, UGANET continued to rely on external donors for resources, and by mid-1999 it was not clear where additional funds were to come from.

It is not being argued here that external donors must provide resources ad infinitum. Rather, that sufficient resources need to be provided for start-up - and that the capacity to secure resources should be an important issue for realistic discussion in any attempt to establish networks. It is not yet certain what the future of the HR/Network will be. The consensus of members is that, while it should continue, it should do so with probably a shift in focus and wider parameters. This impending next stage of its evolution will likely be more challenging than the first. The pertinent actors, tasks and expected outcomes will not be as clear or as limited. A new configuration of the HR/Network is likely to imply its becoming more exploratory and open-ended. Its goals, procedures, membership and requisite skill-sets will be broader, less readily or definitively "selectable". A series of suggestions were made by members and observers as to future development.

  • Engage in active outreach Because the official rate of HIV/AIDS infection is still low, and because the message of their right to protection under the law has not yet reached many of those who are affected or at risk, the mobilising framework of the HR/Network could be to take the law and its developmental perspective directly to communities on a wide-reaching, capacity development basis so as to ensure its fair and universal application.
  • Expand learning Towards this end, members of all three Foundation networks could work more closely together, given that, together, they reflect all levels of society: community, professional and technical, political and policy. Joint meetings, workshops and training would add to the competence and confidence of each network. Sharing the dissemination skills and radio and publication outlets of the Communication Network, and the outreach materials and mechanisms of the Community Network would contribute significantly both to getting information about the new law into communities and grounding it in practice .
  • Engage in lobbying Government When members of the National Assembly and Government change, much of the previous knowledge and interest is lost. It is important for the HR/Network to find a way of keeping these links renewed. This is especially important as the government begins to take action in committing resources to work on HIV/AIDS.
  • Institutionalise the concept It is important that the experience and knowledge gained by individual HR/Network members is grounded in the work of their own institutions in order to enrich the enabling environment for action.

The information and development specialist Richard Heeks draws attention to what he calls resource-deficit participation: "Those introducing participation can make a mistaken assumption about the innate resourcefulness of individuals and groups: assuming that they are latently capable and resourced and that these capacities merely need to be uncovered through participation. In reality, this is not so. Members of organizations, like members of communities, often have heavy existing workloads and have no time to invest in new processes of participation" (p. 4).

With the exception of the Nicaragua network, the extent of resources needed for the functioning of a network was not sufficiently recognised nor made available. The issue was not just one of financial resources, but also of human resources, for example building where necessary the capacity to network: setting up and fostering communication, supporting member ownership, collaborative programme planning and application and regular monitoring. The networks needed to find the time and resources to invest in their members' skill and experience, and not just to draw on their members.

One crucial missing element in terms of resources appears to have been information technology, a surprising finding for a review of network experience. The African networks, national and sub-regional, lacked computers, let alone access to email and Internet. The use of information technology to support networking or networks did not emerge as a factor in discussions in the Philippines or Nicaragua.

On the one hand, this finding should help clear up the misconception that networks are about information systems: as this experience shows, they are very much about human skills, experiences and capacities. However, it is surprising that with present-day knowledge of how information technology can be used as a tool to support networking, it should not even feature in discussions. This indicates that this area should be given more attention in programme design, and tackled during monitoring and evaluation.

Questions regarding structure and resources: What structure is best appropriate for the task? What structure will best engage members and respond to the reality of resources? What resources - financial, human, information technology - are needed to accomplish the goals and perform the functions? What investment needs to be made in capacity? Where will resources be secured and at which stage: members, beneficiaries, government, national donors, international donors?

g. Monitoring and Evaluation

UNDP undertook formal evaluations of the networks it supported, which provided the occasion for the networks themselves to assess achievements and identify constraints. For example, the Nicaragua HR/Network was at a juncture by early 2000 where it needed to "take stock, reassess what it has done; what the current needs, gaps and resources with respect to HIV/AIDS and human rights are, and how its own capacities fit into these. This could take the form of a situation analysis, looking at the evolution of the epidemic and of the human rights issues within that, who the other actors are and what the possibilities for collaboration are, who its partners and associates should be".

During their evaluation of the African networks, Kante et al had discussions about the kind of indicators that determined how well a network was able to perform within its national set-up: the profile of its membership; the personal relationships which members have established with various partners in-country, especially government, NGOs; its visibility and capacity to convene and mobilise at the highest policy levels around issues of human rights, law and ethics within the context of HIV; the degree to which the network had established a real and practical relationship with associations of people living with HIV/AIDS, and was addressing their concerns; and the awareness and understanding of the UN system about the network itself and its role in the entire national response.

The Africa evaluators also underlined the importance of deciding up front on the indicators to monitor the effectiveness of the networks, including: What are the main advantages and disadvantages of this network approach? Can these structures constitute a force for the massive mobilisation of communities required to bring about the desired socio-ethical and legal changes? What will be needed to strengthen these structures?

The experience shows that monitoring and evaluation should be factored into network's functions at the start so that the information necessary to remain on track can be collected as the network evolves.

Questions to be addressed: Has the network clearly stated its expected short-term outputs, medium-term outcomes, and longer-term impact? What indicators have members agreed to use at each stage? At what point is it useful to assess progress? Who should be involved from within the network, from the community, from outside the country? Who will undertake regular monitoring and documenting of experience? How many regular evaluations will be conducted, and who will be responsible?

h. Donor roles

In the case of the networks under consideration, UNDP played four main roles. To begin with UNDP/HDP was the party that identified the need, and introduced the proposed approach at inter-country consultations. Because of its global and local positioning, UNDP is able to identify critical development problems, and this contribution should not be under-estimated. The method UNDP used to introduce the problem as well as to propose the approach - the inter-country consultations - in and of themselves encouraged thinking around this issues at the national level, as the Philippines experience shows.

UNDP's second major role was to provide funding, directly through HDP and the global programme, through regional programmes funded and managed by UNDP Regional Bureaux, and through country programmes managed by country offices. In some cases, this generated national ownership and commitment, as in the four networks under review. In other cases, the idea did not take hold, as at the sub-regional level (as explained in III/b), as well as in some national contexts such as Cote d'Ivoire (see the Evaluation by Kante et al).

As discussed above, the level of funding required was not always in line with the need and the networks' requirements for sustainability. As Kante et al stated, "It was clear to the team that most of the networks expected greater involvement from UNDP/Regional Project, especially as regards financing their activities. As one member of the Congolese team put it, UNDP/the Regional Project's approach to the networks could be likened to 'a mother having a beautiful child, then abandoning the child.' But herein lies a crucial problem not only of some of these network, but the entire approach to 'developmentalism' in Africa where it is perceived that societal transformation is dependent on an external environment" (p. 37).

Again, it should be stated that the point here is not that donors should provide funding in perpetuity, but rather that sufficient start-up funding be provided, and that support of the capacity to fund-raise - given the need for resources - should be addressed in programme design. In this regard, a question for external development partners to consider is: what conditions need to be in place before funding and other support is terminated?

However, although funding is important, two other donor roles were equally important and, with hindsight the experience, should perhaps have been given more prominence by external development partners:

  • Monitoring and evaluation - For an initiative which was new in every respect - from concept through to the mechanisms used - it would have been useful for donors to support ongoing monitoring and evaluation to identify the points at which financial resources were critical, member capacity was lacking or stretched, and clarity was needed around purpose and goals. Monitoring would also have revealed at an earlier stage that reliance on regional projects or coordinators to support national networks was not the best approach.
  • Credibility - The credibility that a neutral, respected and international organization like UNDP brings is very important to development. By all accounts, UNDP played this role very well in Nicaragua, where the country office was an active member of the network, and the global HDP programme participated in meetings, bringing experience and perspectives from other regions. However, the forcefulness of this role varied in other cases.

One could argue that the latter two roles are as least as important to an initiative as money and the launching idea. Indeed, in the case of Nicaragua, UNDP's funding support was minimal. However, the moral support provided, "enhanced the status and underscored the validity of the undertaking. It gave it an explicitly non-partisan character, as an action of critical public policy rather than a political manoeuvre. It also reinforced the message that the necessary emphasis of the law was one of human development, HIV prevention and human rights, not of control or punishment".

In addition, HDP "provided intellectual resources and colleagues - a facilitative link to legal and ethical networks elsewhere in the world and useful support for the work from headquarters. The UNDP Resident Representative has publicly endorsed the work of the HR/Network, offered agency facilities for its meetings and engaged in open discussion about its future evolution. Foundation staff are members of the UNAIDS 'extended' Theme and Technical groups. Links are also being made with government sectors not previously strongly associated with issues of HIV/AIDS and human rights, such as the Ministry of Education". (Bernard)

The "credibility factor" that the UN can bring is one that is not always fully appreciated, and yet it is a very important contribution. The fact that it is not factored into planning means that it is not fully taken into account when resource issues are considered in launching donor initiatives. Although it does not use up a great deal of an agency's financial resources, it does take up other resources, in particular a staff time (the credibility factor is not generally a role consultants can play on behalf of an agency).

In this case, for UNDP to have made the same investment in the 38 other networks it helped to support as it did in Nicaragua would have meant considerable investment of staff time on the part of its global unit, as well as securing the buy-in at an early stage of UNDP country offices so that they could factor the time involved into their own planning.

As it happened, the engagement by the UNDP country office - even those where the organization had invested in a national staff member to deal with HIV/AIDS issues - in this network experience was sporadic. In both Africa and Asia, for example, the UNDP focal points on HIV/AIDS were found to be very knowledgeable about the issues and dynamics of HIV/AIDS in their respective countries and to have strong and positive relationships across the affected communities. However, with some notable exceptions, they were not involved with the networks, which would seem to be a significant missed opportunity.

One of the notable exceptions, as reported by Kante et al, was the UNDP focal point in the Central African Republic, cited "as one of the most effective focal points encountered. Certain characteristics define her mode of work which appear to have facilitated the promotion of the work of the network and the prominence which HIV/AIDS currently has within the UNDP Programme itself". They cited high level of interest and competence, a thorough understanding of the mandates of all UN agencies, "extremely good relationships" with government; and "extremely good representation/lobbying for HIV/AIDS issues within UNDP itself, such that the resident representative in particular but all staff in general understand and act on the urgency and implications of the epidemic".

Another finding that emerged from the evaluations of the legal, ethical and human rights networks was that external donors (this was in fact said of non-UNDP donors) were likely to come in and "impose alliances" rather than building on those already established, which in the case of Nicaragua reportedly contributed to the paralysis after the passage of the law.

In Africa, a clear sense emerged from the evaluations that donors contributed to the instability rather than stability of networking efforts, through: overly rigid and territorial programmes, discouraging collaboration among local actors, and lack of sharing of information and integrative planning. New development planning frameworks undertaken by UN 21 agencies are seen as just the beginning, requiring serious on-the-ground commitment.

 

Conclusions

In summary, and building on the lessons learned above, five main conclusions can be drawn from the experience of the ethical, legal, and human rights networks:

  • Networks are a valuable and useful development mechanism to address emerging and multi-dimensional issues that require contributions from a large number of actors.
  • Networks do need structures and resources. In addition, they are likely to need intensive investment in partnering and in moral support to take root. Investment in the capacity to network is also an area requiring attention.
  • In cases where networks are expected to address development problems of epidemic proportions, intensive monitoring and evaluation is necessary to ensure that they are focused and appropriately resourced for the task.
  • Investment needs to be made in network member understanding of the uses to which information technology can be put as a tool to support activities, as well as in the equipment to do so.
  • Donors can play important roles in terms of supporting networks. Donor coordination can enhance this contribution and minimize potential difficulties arising from lack of communication and overlapping or conflicting agendas among stakeholders.

 

 

8. Case Study - Nicaragua 22

Summary of Main Points

  1. The HR/Network was successful in creating itself as a network and realising its goals because:
  2. It had an appropriate secretariat, in this case the Foundation. It had well-established principles of action and a framework directly relevant to that of the HR/Network, together with the skills needed to facilitate the kind of learning which underlies networking. In all its management and programme work, it provided "an encompassing intellectual and facilitative 'umbrella'" under which the HR/Network could function effectively.
  3. Through the secretariat, the Network's activities were reinforced within a consistent and supportive "networking arrangement". Members could feel they belonged to an association, that they shared control of the process, and that they were benefiting sufficiently to justify the efforts and risks of participation.
  4. Through the secretariat, members were purposely and personally selected. They were identified on the basis of their ability to contribute to the goals and processes of the network and to networking. They were required to have a relevant mix of expertise, to be able to influence public policy and to have a demonstrable commitment to human rights. They were expected to be open, collaborative and willing to share their learning.
  5. It created an effective space for participation for these well-selected people. It allowed for an open, transparent and broad-based process, within an appropriate time-frame and was effectively facilitated. It allowed members to tailor their level of participation to their other responsibilities, while remaining connected and engaged.
  6. It was well served by its partnership with UNDP, which gave the Network heightened status through its country office and which through the expertise of the HDP, helped Network members to contextualise the epidemic within a global context, explain the rationale and importance of an anti-discrimination law and assure the quality of the proposed draft.
  7. Through its non-directive leadership, facilitative management and effective use of members' respective expertise, the Network was able to create a sense of ownership among its members. They expressed full rights and responsibility to make decisions and to take action. In turn, ownership reinforced commitment, energy and creative action.
  8. The network arrangement was an appropriate mechanism for the task. The law had to be inclusive, accessible to all and emphasising prevention. It had to be set within the overall context of human rights, not limited to those affected by HIV/AIDS or to a public health framework. To create such a law required an inclusive, multi-sectoral development and rights-focused mechanism. The Networking approach allowed sufficient time for genuine collaboration together with incremental action. Members were regularly available, but not overwhelmed by the tasks which were required of them. The network structure made coherence and consistency possible within a realistic framework for high profile members.
  9. The HR/Network was not entirely successful in the accomplishment of its goal to have in place an "implemented" law
  10. Like all networks, the Network was vulnerable to the vagaries of iterative funding. The Network was unable to secure opportune follow-on funding from UNDP or other donors. As a result it had to relinquish the process of facilitating the movement of the law into legislative regulations.
  11. The HR/Network should have a continued life. Its members remain committed to the initial goal of an enacted "operational" law. This requires assuring the development of an effective and consistent regulatory system, including wide and facilitated dissemination, application and institutionalisation of the law at all levels of the society.

 

Law 238: Promotion, Protection and Defense of Human Rights in the face of AIDS

During the 1999 review process which assessed UNDP/HDP's support to a number of regional and national networks the Nicaragua "Law 238: Promotion, Protection and Defence of Human Rights in the face of AIDS" was identified as a best practice case study of an effective output of Networking. The selection was made using UNAIDS criteria for best practice, namely, relevance, effectiveness, ethical soundness, efficiency and sustainability. Analysis of this criteria in relation to Nicaragua is described below:

Relevance

The context of the epidemic in Nicaragua in the early 90s together with the goal of creating an anti-discriminatory law to address it, were such that a loose association of experts, working in a flexible and open-ended way and operating with an iterative, focused agenda makes the Network of clear relevance.

Not only was the mechanism of a network an effective way of consensus building and galvanising the necessary support for the law, it established a constituency which has grown and developed since. With low visibility of the epidemic in Nicaragua, there was little interest in protecting or supporting those affected. Further, because human rights was not as yet a well-established aspect of public discourse, there was no clear organisational base on which responsibility for generating relevant action could be assumed to rest.

The network mechanism fit the task. It enabled a range of expertise and experience (reflecting the main sources of expertise on health, human rights, legal and HIV/AIDS in the country), to come together. Networks are energising and depend crucially upon the motivation of members. Through members, Networks have multiple entry points to existing systems. Links to political, legal and health policy systems of the country, at senior levels, were critical in getting the law right and getting it approved.

The management of the Network effectively enabled it to work with and link to its environment. This is critical for a network which, by definition, has little if any institutional base or permanent constituency.

Effectiveness

The intended outcome of a broad law protecting human rights within the context of HIV/AIDS was indeed drafted and approved. On the other hand, the effectiveness of the application of the law, has been undermined through an externally-supported contradictory regulation, suggesting the extent to which external donors, however benign their intentions, can have a dramatic, and sometimes negative impact upon the current environment.

Ethical Soundness

This was the specific focus of the activity described which based itself upon principles of openness and accountability, participation and working in collaboration with, and through, established legal and political procedure.

Efficiency

The mechanism of a network was not only strategically effective it was also cost-effective. Careful attention to the selection of members ensured that the appropriate and necessary expertise was available from within the Network. As a result, the law was drafted and approved, apparently in record time.

Sustainability

The network has generated broad and continued commitment to addressing legal, ethical and human rights aspects of HIV/AIDS and its members have begun to consider priorities for the future. The Foundation is committed to continuing to provide an institutional base, together with technical and managerial support.

While networks can be extremely cost-effective there are associated costs nonetheless, particularly to host institutions and to the agencies from which members come, especially if their participation occurs within working hours.

Nonetheless, agencies must perceive some value from the exercise for them to allow staff members to participate and represent their organisation in the first-place. Agencies may also benefit from substantially from skills, expertise and enthusiasm gained by their representative. Host institutions also incur costs, not least of which involves the use of organisational resources (human and technical).

There are characteristics of networks which seem to be particularly conducive to success: for example careful selection of members, together with clear goals and structures. When successful, as in this instance, it seems that networks potentially can generate considerable commitment and mobilisation across a broad range of sectors.

The detailed case study that follows has been edited and slightly revised in order to be consistent with the UNAIDS guidelines for case-study presentation.

 

Background

The UNAIDS/WHO Epidemiological Fact Sheet (2000 Update) states that, by 1999, the population of Nicaragua had:

  • reached a total of 4,938,000, with 2,366,000 aged between 15-49
  • an annual population growth rate of 2.8%
  • 62% of its total population living in urban areas
  • per capita GNP of $410
  • 33.6% of its population economically active
  • literacy rates of 66% for men and 65% for women
  • a Human Development Index ranking of 121
  • male and female secondary school enrollment ratios respectively of 43.4 and 51.1
  • a crude birth rate of 35 (births per 1,000) and a crude death rate of 16
  • a maternal mortality rate of 370 (per 100,000 live births), an infant mortality rate of 68 (per 1000 live births) and life expectancy at birth of 51 years.

In terms of HIV/AIDS, by the end of 1999, Nicaragua had:

  • 4,900 adults and children estimated to be living with HIV/AIDS (of whom1,200 were women and less than 100 were children)
  • lost 360 people to HIV/AIDS (during 1999)
  • a cumulative total of 520 orphans (i.e. children under 15 years old having lost their mother or both parents to HIV/AIDS)

No information on HIV prevalence among antenatal patients, male STD patients or injecting drug users is available for Nicaragua.

In terms of human rights, the Paris HIV/AIDS Summit (1994) called for the strengthening of mechanisms to ensure that non-discrimination, human rights and ethical principles become an integral part of action in response to the epidemic. Within this framework, those affected are assured the rights to function normally within society: for example, with access to available social and health services, to live, to work, to study and raise a family, with the security that they will be neither ostracised, nor harmed, because of their HIV status. Confidentiality is to be protected and people must be free from fear of repercussions should disclosure become unavoidable, either for the sake of their own care or treatment, or for the protection of others.

UNDP/HDP had already begun to explore the possibility of supporting multi-sectoral responses and socially inclusive partnerships in order to respond to the ethical, legal and developmental challenges posed by the epidemic. Within this context, the concepts of networks and networking as specific development mechanisms, appeared to offer considerable potential. The 'loose' arrangements of social exchange, co-operation and mutual support which characterise networks could allow for wide and varied membership and for iterative action. Networks presented a way of supporting the combination of initiatives necessary to define the increasingly diverse range of ethical and legal issues confronting affected individuals, groups and communities in their different settings and circumstances. In contrast to more traditional institutions, networks offered the potential advantages of flexibility, a non-directive and broad participatory nature together with the capacity for rapid action.

Brief Description

Describing the experience of the Ethical, Human Rights and Legal Network for HIV/AIDS in Nicaragua (HR/Network 23), this case study explores how and why a network arrangement was appropriate and effective in generating an anti-discrimination law in the context of HIV/AIDS.

The Network has been unique: the result of the particular people, institutions, culture and the status of the problem involved. The HR/Network was established under the auspices of an existing NGO, the Fundacion Nimehuatzin. The Foundation provides the network's management base, secretariat; philosophy of inclusion and capacity development; its direction of work (towards a non-discriminatory approach to the law); and its way of working (learning through reflection and action). 24 The HR/Network is also fairly unique among the UNDP associated networks in being specifically purposive and expressly task-oriented in its formulation and activity.

Clearly, the Network has been effective. It has successfully brought together key individuals with the credibility, legitimacy and expertise necessary to draft an innovative HIV/AIDS law set within a human rights and development framework. Moreover it has facilitated the passage of the law through the National Assembly.

Goals

The Network had one principal objective: to contribute to the creation of an enabling ethical, legal and human rights environment through the preparation and implementation of a appropriate law.

Brief History

The Nimehuatzin Foundation was established in 1990 at a time when the needs of those considered vulnerable to infection, for example, sex workers, truckers, migrants and other marginalised communities were being ignored. Gay men were discriminated against, socially and legally (through enforcement of the country's sodomy law). The country had neither preventative HIV/AIDS policies in the health or education sectors nor the protection of human rights legislation. The Foundation articulated its mandate within a multi-dimensional framework of learning and development, with prevention and protection of human rights the fundamental principles of action. These areas continue to be critical "anchors" of the Foundation in its training, research, communication, policy intervention and counselling work, and in its support to networking.

Learning underlies all activities of the Foundation reflecting its perception of HIV/AIDS prevention as a matter of strengthening the capacity of individuals to make appropriate choices and protection as a matter of social equity. These principles are reflected most readily evident in the Foundation's educational activities: including training workshops and mobilisation seminars with community-based organisations; training exercises with policy groups, health workers and lawyers and individual counselling sessions. The Foundation's Documentation Centre is the largest in the region. A formal quarterly journal "DeSida" presents both local and international articles on current aspects of HIV/AIDS. A range of material (much of it designed for low literate groups) addresses issues of specific concern to adolescents and children, sex workers, gay communities and people living with HIV/AIDS.

The Foundation applies this same learning framework to itself as it moves towards developing a small-scale research programme. Situation analyses have looked at high-risk behaviour in Nicaragua. Secondary-source reviews have generated data on particular socio-economic, KAP and epidemiological aspects of the epidemic. Participatory research with communities is starting. All of this is intended to contribute to the knowledge base of the Foundation. In turn, it will serve to strengthen its policy intervention, training and communication work.

Increasingly, Nimehuatzin is becoming involved in direct support to communities affected by HIV/AIDS: including those who are themselves infected or caring for others who are come in search of information, testing and counselling, medicine and hospice care. This evolution in role is enabling the Foundation to extend its capacity and reach into communities, and as a result, to be able to work on the epidemic in a more complex, comprehensive way. While people may be drawn to the Foundation for information or training, many remain involved, making a personal contribution to the Foundation's activities. Through this process of 'internal networking', the quality and relevance of the work is enhanced and levels of participation kept consistently high.

Under the umbrella of the UNDP/HDP support to networks, one of the Foundation's members participated in the UNDP supported 1992 meeting of the Law, Ethics and HIV Network for the Asia and the Pacific region, held in the Philippines. Among other priorities, delegates urged countries to promote or reform existing legislation, or else to develop codes of ethics for policy-makers, legal systems and social services, as the means of ensuring the rights, protection and care of PLWHAs. This led to Nimehuatzin's initial decision to initiate a code of ethics within Nicaragua's medical sector.

As a result, meetings were organised by the Foundation, initially with the Centre for Constitutional Rights (which is mandated to develop and promote national laws) and 2 or 3 others from key organisations and communities. However, recognising that Nicaragua had no well-established instrument for the protection of human rights more generally, and that HIV/AIDS was clearly more than a health issue, the focus of activity was almost immediately expanded. The goal shifted towards developing a national anti-discrimination law for HIV/AIDS, which would place the epidemic within a truly comprehensive human rights framework replacing the then predominant health paradigm. Political legitimacy came from the fact that Nicaragua was signatory to international agreements on human rights, and in its National Constitution had committed itself to reflect such agreements in all it laws.

The process of developing the law involved a number of activities including analyses of the situation of vulnerable groups (e.g. sex workers, gay community). Of particular concern was the need to avoid a law which could be used to create fear, to discriminate, criminalise or punish. It was considered critical that the law be inclusive and accessible to all those potentially affected by the epidemic (in whatever capacity).

Given the prevailing low visibility of the epidemic, it was also considered important to emphasise the importance of prevention. In sum, the law would have to be set within an overall context of human rights and be relevant to all members of society, rather than focused narrowly upon those affected by HIV/AIDS. It would have to go far beyond the scope of a public health regulation. It would need to be developmental, ensuring rights to housing, education and access to social and health services. While the general direction of the new law was clear, the specifics of its content and presentation had yet to be explored and negotiated.

It became clear that the actual process of developing the law would need to be utterly transparent, open and based upon broad-based participation. In turn, this led to a change in the group's structure in recognition of the breadth of issues involved and the time that would be required. The vision which emerged was of collaboration, over a period of sufficient duration to allow for relevant research, drafting and publication. Members would need to be regularly available for meetings, to develop and review drafts, to provide and locate analyses and to lobby with government and other stakeholders. The possibility of establishing a new NGO was considered too formal. Members of the necessary professional calibre were usually unavailable and occupied with high profile, busy positions.

The mechanism of a network was considered as allowing members to match their level of participation to their other responsibilities while at the same time, a network could keep members connected and engaged. Relationships and communication could remain horizontal, iterative and consistent. A network would balance the need for the larger, more formal structure required to draft a law with maintaining the informality and trust of the smaller group. Confirmed in 1995, the Network consolidated itself as a space for "sharing knowledge and building consensus".

 

Major Elements of the Project

Commitment to Learning

Through networks, the Foundation aims to build a knowledge base and strengthen capacity related to HIV/AIDS, both among the general public and for specific vulnerable groups. The Foundation is committed to learning and this is demonstrated through the application of sound educational principles (such as clear language, starting 'where people are', small group learning, setting clear and specific educational objectives and learning outcomes) which are reflected in each activity and the processes employed in their development. Through an approach which values people and their experience as the foundation of learning, the Foundation demonstrates the processes employed towards its capacity development goals. These same processes are fundamental to the functioning of networks as development mechanisms.

Networking

Networking is the Foundation's primary mode of operation: the mechanism through which much of its outreach and mobilisation activities are delivered. It allows a greater number of people to be engaged and permits a broader range of perspectives and activities to be recognised. Each network generated through the Foundation has developed according to its own purpose, members and context, within the overall culture and vision of Nimehuatzin. While each supported network is unique, individual development and success can be understood only within the overall context.

The Community Network for Human Rights in the face of HIV/AIDS (Red Comunitaria de Derechos Humanos ante el SIDA) is co-ordinated by the Foundation and a Women's NGO, Casa de la Mujer Sonia Bello. It builds on a growing base of organisations trained by the Foundation and working on HIV related issues with young people, sex workers, women and gay collectives, truck drivers and industry workers, The Community Network serves as a vehicle for activists to share experience, hard-won expertise and give and receive moral support. As such, it is perhaps most appropriately described as a capacity strengthening network, using the exchange of experiences and philosophies, and different knowledge and skills, to increase the capacity and energy of all. Consistent with this purpose, the network is managed in an open-ended way with activities evolving as members needs, interests and growing capacities warrant. This network is in part a "network-of-networks" which increases its potential for broad inclusion and the resulting challenges of communication. Limited funds have prevented frequent meetings and much of the work of the NGOs themselves is voluntary. It is hoped however, that, with its rising profile as a national networking base, it will be able to mobilise government and donor links and generate the resources required to strengthen and stabilise the community work of its members. A critical balance for this network is in increasing the number of its member groups (in order to gain critical mass), while maintaining direct ties with local people, which is its particular strength.

The Nicaraguan Network for Communication and Human Rights in the face of AIDS (Red Nicaraguense de Comunication y Derechos Humanos ante el SIDA) is a network for facilitating access to and sharing of information about HIV/AIDS among people in the media. It is thus a professional exchange network rather than a closely interactive social arrangement. It is comprised of media professionals, those wanting to specialise in issues of HIV/AIDS and human rights and those interested more simply in keeping abreast of these matters as part of their socio-political reporting. There is no central network co-ordination as such; one member of the network serves as its focal point and the Foundation performs the role of technical advisor. Growing links across the networks are enabling members to interact with and participate in the others. This is a crucial development for the HR/Network as it looks towards more proactive dissemination, advocacy and monitoring of the new law. 25

Key Tasks

In its first phase, the work of the Network was realised through prompt action: meetings, workshops and conferences, production and dissemination of written and audio-visual materials and media. While these activities reached community and department (provincial) levels, the focus appears to have been mostly on central level policy-makers.

The task of drafting the law, while it went through several versions in an effort to secure comprehensively the development and human rights dimensions, followed a fairly standard procedure. On World AIDS Day 1995, the law was formally presented to the National Assembly by an Assembly member who was also a member of the HR/Network.

Once presented, the law then had to be reviewed by the Health and Human Rights Commissions of the National Assembly. Nine months later, the law was approved, apparently an unprecedented period of time. This is an extremely progressive human rights law and own which potentially offers a model for the region.

The rapid pace of the process appears to have been the direct result of the efficiency and effectiveness of the HR/Network, rather than attributable merely to luck. In the first instance, the Network had produced a document of high quality. Further, the Network was able to mobilise effectively in support of the review; to manage the event in many ways as a learning process. Network members drew upon their status as high profile professionals in conducting strong, coherent interventions, including systematic dissemination of background materials and advocacy on issues of particular concern to individual commissioners. In this way, members were able to explain and clarify, as well as generating a transparent framework around the law, and a sense of confidence in its quality, rationale and potential for positive impact.

However, subsequent to the publication of the law, the Network failed to secure the funding required for dissemination, mobilisation and popular education activities and this appears to have paralysed the entire process. Nonetheless in May 1997, without funding, the Network resumed the process by initiating work on a strategy and draft ruling of the law (the Reglamento) which was presented to the Minister of the Presidency.

While the network continued its efforts, another funder came into the country and provided financial support to other individuals and groups. This funder had played no part in the process described above nor was intimately involved with issues pertaining to HIV and human rights. In contrast to the spirit of the law with its focus on education and compensation, these groups focused on punitive action against those who violated it. When approval of this version of the regulation was delayed for unrelated political reasons, representatives of the funding agency continued to support its passage and the regulation was eventually approved by the National Assembly.

The Network´s principal concerns about this Regulation have been that:

  • it is based on a conceptualisation of the Law as an 'HIV/AIDS law' rather than the human rights law that it is was always intended to be i.e. a law pertaining to the whole of society and not exclusively to people living with HIV/AIDS.
  • serious legal contradiction exists between the Law and the regulation.
  • Law 238 was conceptualised as a means of changing social attitudes and behaviour without needing to resort to the imposition of penalties while the Regulation allows for individuals and institutions to be penalised for non-compliance.
  • The development process of the regulation did not draw upon either multi- disciplinary or multi-sectoral involvement. The opportunity was not taken to consult with, sensitise or educate policy makers and the process was confined to a few individuals pursuing very specific agendas.

 

Partnerships and Alliances

Network Membership

The nature of the membership allowed the Network to change the perception of HIV-related issues from a narrow focus on NGOs working in communities towards a broader one of national policy significance and responsibility. They produced a professionally competent, broadly endorsed and developmentally enabling HIV/AIDS anti-discrimination law. They took HIV/AIDS related concerns with them into critical power structures as they occupied various gate-keeping positions and work from within, were able to explain issues, answer questions and reinforce the importance of the law. Effectively straddling the line between the Network and its user groups, members have built confidence and created trust within their various spheres of professional and political influence. Finally, the selected mix of expertise and collegial attitudes has extended the capacity of the membership as a whole with each able to learn from the others.

Member Selection

One major reason for the success of this work has been the close attention paid to selection of members. Value has been placed on qualitative criteria rather than formal position or status, geographic representation or numbers. Individuals were identified on the basis of their "fit" to the goals of the proposed network: specifically the ability to influence public policy; proven commitment to human rights and readiness to be open, collaborative and willingness to share their learning.

For its part, besides fulfilling a convening function as Network secretariat, the Foundation brought extensive knowledge of HIV/AIDS. Other members contributed in-depth legal, human rights, health and policy-process expertise.

Country Partners

Members included the country's three human rights NGOs, each representing different Nicaraguan socio-political perspectives and constituencies. They included, too, the Director-General of the Ministry of Health, a senior lawyer and member of the National Assembly, the Centre for Constitutional Rights and officers of both UNDP and PAHO. The diversity of members and their constituencies was important in contributing to the perception of the law as being above partisan politics and to the generation of widespread support.

Government - UNDP - UNAIDS

UNDP/Nicaragua participated as a member in most of the Network's activities but much more critically as a public ally (rather than as a funder), given UNDP's status within the Nicaraguan policy community. In reality, until recently, UNDP/Nicaragua financial support has been minimal. The role of UNDP/HDP was more in-kind than financial. It provided intellectual support together with facilitative links to legal and ethical networks elsewhere in the world.

Partnership with UNDP/HDP also proved critical to process. By making themselves available to the Network in a workshop for members of the National Assembly, senior HDP officers were able to situate the epidemic within the global context, explaining the rationale and importance of anti-discrimination laws and confirming the quality of the proposed draft. The event, a group learning exercise, was unique in the history of the National Assembly and it proved to be a key contribution. Not only did it enhance the status and validity of the undertaking. It also reinforced its non-partisan character: an action of critical public policy rather than a political manoeuvre. The workshop highlighted the need, in the context of the epidemic, for the law to focus not on control or punishment, but upon human development, HIV prevention and support and human rights.

Foundation staff are members of the "extended" Theme and Technical groups and the UNDP Resident Representative has publicly endorsed the work of the Network, offered agency facilities for meetings and engaging in open discussion about its future evolution. Links are also being made with government sectors not previously strongly associated with issues of HIV/AIDS and human rights, such as the Ministry of Education.

Network of Networks

The Network has strong links to organisations such as LACCASO and ICASO. Access to international and regional experience and materials such as the International Human Rights Guidelines on HIV/AIDS have allowed members to incorporate new ideas into their own drafting procedures. The concepts of behavioural change, inter-cultural communication and participatory assessment have proved to be new to some members and are providing added value to their legal or health related activities.

 

Monitoring and Evaluation

In 1999, an assessment was undertaken of the UNDP/HDP supported networks. Key questions to be considered included:

  • What has been the development "path" of the various types of networks, as networks, over the past half decade?
  • What impacts have they had on the legal and ethical issues affecting people with HIV/AIDS?
  • What is the likelihood and benefit of their being continued?
  • What has been the influence and value of UNDP support?

In short, the Network has delivered significant results in terms of output and outcomes. However it has yet to realise its full potential in terms of the impact which could result from dissemination, application and institutionalisation of the law.

Enabling Factors for the development and success of the Network

Two key criteria support the success of the network: the quality of its functioning as a network; and the relevance of a network mechanism to the task at hand: creating a law for the promotion, protection and defence of human rights in the context of HIV/AIDS.

In attempting to understand how networks can be employed as mechanisms to address legal and ethical aspects of HIV/AIDS, it is important to consider those factors and conditions which can support people (or not as the case may be) as they come together to work in loosely connected association, exploring, exchanging and assuming responsibility for the collaborative production of a planned result. These factors will determine the way in which an association evolves and the extent of its longer-term sustainability, in whatever form. 26

Ownership

The ultimate strength and sustainability of a network is a direct function of the degree of ownership felt by its members: ownership is perhaps the critical factor in assessing network viability and value. It implies that those responsible for maintaining a network accept the right and responsibility for doing so, irrespective of any systemic forces which keep them engaged. Ownership is not easily achieved. It requires that members understand and agree to the rationale, philosophy, goals and procedures of the network, and the implications of these in terms of risks, costs and potential benefit. It requires that members exercise control over resources needed for managing the network and its activities.

While the Foundation is clearly recognised by Network members as being at its core, Network management is perceived as light and inclusive: leading by the quality of its input rather than through control of the process. Every member signed an initial letter of intent to participate. None appears to have changed his or her mind, in fact, several expressed regret at their inability to be as proactive as they wished.

Value to Members

Networking is a voluntary arrangement. People may become members because they are invited; they will stay members because they see in the association a way to realise specific value to themselves and/or to their own goals. Motivational aspects of participation are key to understanding why people become involved and why they quit. The better the match between the goals and methods of the network on the one hand and the aspirations and capacities of its members on the other, the more sustainable and successful the association seems to be.

The Network has been particularly successful in this regard. During, and even after completion of the task of drafting the law, the Network has been able to maintain a strong membership by allowing individual members to participate in their own ways and to realise benefit from their association. Members attributed this to being able to learn from each other. They exchanged knowledge and perspectives on HIV/AIDS, human rights and the law, and gained enhanced awareness of different dimensions of the epidemic in the process. For some, this opportunity for cross-fertilisation was among their reasons for joining. For others, it was a serendipitous outcome produced by the facilitative way in which the interactions of Network have been managed.

Leadership

Leading task-oriented networks is a delicate process. On the one hand, there must be sufficient direction to keep members and activities focused on the goal while, on the other, enough flexibility must exist to allow members to draw upon their own expertise and to develop the relationship in ways they feel are most appropriate. While this co-ordination function can sometimes be performed from among the membership on an ad hoc basis, in other instances it requires a formal position recognised and agreed by those members who lack the time or inclination to assume such a role. As secretariat, the Foundation has fulfilled the dual role of member and co-ordinator of the Network from the outset. It lay the foundations for the Network by bringing together the first informal group of experts to develop a medical code of ethics for HIV/AIDS and it played a pivotal role in the transition from that specific group into the formal network structure.

The leadership provided by the Foundation has been critical to the Network's formulation and success. It has ensured appropriate member selection and commitment. According to one member, it was leadership which:

"made all of us, as members, realise we needed to work together and to respect what each other brought".

Of particular relevance to the limited structural cohesion possible within a network and the time constraints on the availability of members, the secretariat was able consistently to facilitate learning and to promote inclusion. This was perceived by several members as bringing to the meetings and activities a sense of rigor, discipline and "an obviously informed and persistent commitment" to all activities. Regular meetings were held and according to members, were well-organised with agendas distributed in advance, tasks assigned, consistent follow-up and meeting minutes "taken to each member for confirmation and comment". Members felt involved and informed; and that good use was being made of their time. The leadership style was also perceived by members as effective in encouraging them to assert their own direction, it:

"allowed for multiple leadership points, guiding us from behind and providing information. It was never intrusive."

Membership Selection

Members of a network are the network. If they are unmotivated to engage, the sense of connectedness, the open communication, mutual respect and collaboration which are the necessary conditions of networking -- do not materialise. If members lack the knowledge or skills to perform the work of a task-based network, the logic for expending effort and commitment will soon be lost.

The rationale for acting on HIV/AIDS and protecting the rights of those affected was clear and urgent from the outset. It also required a specific type of expertise, attitude and professional commitment on the part of those assuming the task. It would need people with the right mix of technical training, experience and influence, together with a readiness and ability to negotiate and collaborate, to shift paradigms and tolerate uncertainties. All of these qualities appear to have been reflected in the membership of the Network and as a result, there was a good fit between the task and members' talents and enthusiasm.

The role of Nimehuatzin in managing the selection of members was critical. Beyond "sending invitations", selection was based upon a number of significant pre-conditions. It required thorough knowledge of the main HIV/AIDS and human rights issues, the ability to see connections among them, and the capacity to "make the case". It required the ability to match the demands of the law creation task with the appropriate range of knowledge and skills for implementing it. It required a sound professional track record of sufficient quality to convince senior key players to agree to participate, and a management capacity of sufficient calibre to convince them to stay involved. It was a set of capacities that already existed in the Foundation's leadership.

Effective Use of Human Resources

Networks have particular value in bringing together talents and perspectives that may not, traditionally, be used to working in partnership across professional, personal or political boundaries.

Because of its base within the Foundation, the Network is in the middle of a "web" of mutually reinforcing activities and functioning within the context of a clearly articulated framework of action. In this setting, the quality of interaction among members appears to have enabled the Network and Foundation to create a common culture and to set and pursue a coherent shared agenda.

 

The Future

Clearly, the Network has been effective. In terms of its product, it has been successful in bringing together members with the professional credibility, political legitimacy and technical expertise necessary to draft an innovative HIV/AIDS law based within a human rights and development framework; and to facilitate the passage of that law through the National Assembly. In terms of its process, the Network has been successful in managing its work and relationships in such a way as to enable members to assume a strong sense of ownership and to realise value from their collaboration. In terms of its sustainability, the Network is moving towards success in establishing itself as an association in which members' commitment and conviction continue; and to which other communities are giving recognition as a credible and important player in issues pertaining to HIV/AIDS and human rights.

The future of the Network is uncertain. The consensus of members is that while it should continue, it should probably do so with a shift in focus and broader parameters. Clearly much of the success of the Network has been the result of its intimate relationship with the Foundation, both as founder and secretariat. Presumably this flexible relationship will continue as the HR/Network evolves.

The development of the next phase of the network will be more challenging than the first. Relevant actors, tasks and anticipated outcomes will be broader than before. A new configuration of the Network is likely to be of a more exploratory and flexible nature, with goals, procedures, membership and requisite skill-sets which are both broader and harder to define.

In turn these will require access by the Network to funders, technical expertise and collaborative linkages both from within and beyond Nicaragua. Both core and flexible-use resources will be required, necessitating different working relationships with donors including longer-term partnerships and fewer one-off projects.

There is no reason why such an arrangement should not be possible, given the credibility, capacity and reliability of both the Network and the Foundation. In fact, the basis for these relationships may already have begun to be laid. The Foundation has credibility among donors in terms of its expertise and capacity to mobilise across a broad spectrum of HIV/AIDS and human rights issues, and Foundation staff are recognised for their technical expertise by UNAIDS, demonstrated by membership of the UNAIDS "extended" Theme and Technical groups within the country. The UNDP Resident Representative has endorsed the work of the Network and participated in discussions pertaining to its future development.

Lessons Learnt from the case study

While networks can be extremely cost-effective there are associated costs, particularly host institutions and the agencies from which members come, especially if their participation occurs within working hours.

Nonetheless, agencies must perceive some value from the exercise for them to staff members to participate and represent their organisation in the first-place. Agencies may also benefit from substantially from skills, expertise and enthusiasm gained by their representative. Host institutions also incur costs, not least of which involves the use of organisational resources (human and technical).

There are characteristics of networks that seem to be particularly conducive to success: for example careful selection of members, together with clear goals and structures. When successful, as in this instance, it seems that networks potentially can generate considerable commitment and mobilisation across a broad range of sectors.

 

The Future

Members and observers of the Network have proposed their own specific recommendations and suggestions for future development and these are presented in their own words:

Rekindle the momentum

It is important to "unstick" the law dissemination process from where it has stalled since its passage. Because the official rate of HIV/AIDS infection is still low, and because the message of their right to protection under the law has not yet reached many of those who are affected or at risk, the mobilising framework of the HR/Network needs now to be on active outreach - to take the law and its developmental perspective directly to communities on a wide-reaching, capacity development basis so as to ensure its fair and universal application. Within this, there needs to be a stronger focus on young people as an especially vulnerable group.

Strengthen the outreach - the knowledge, experience, skills and linkages the HR/Network brings to bear on the human rights dimensions of HIV/AIDS

New members need to be drawn in, and continuing emphasis needs to be given to all members' learning. As a first strategy for doing this, members of all three Foundation networks need to work more closely together. Together, they reflect all levels of society: community, professional and technical, political and policy. They share the same basic values: of a development and human rights perspective on HIV, and of the need to sensitise the wide population about their rights and responsibilities to prevent and protect. Joint meetings, workshops and training would add to the competence and confidence of each network. Sharing the dissemination skills and radio and publication outlets of the Communication Network, and the outreach materials and mechanisms of the Community Network would contribute significantly both to getting information about the new law into communities and grounding it in practice.

Reconfigure the HR/Network as a continuing lobbyist with government

The broadly-focused "vision" of HIV/AIDS as a development and human rights concern established by the HR/Network in its workshop with the National Assembly needs to be maintained and strengthened. When members of the Assembly and government change, much of the previous knowledge and interest is lost. It is important for the HR/Network to find a way of keeping these links renewed. This is especially important as the government begins to take action in committing resources to work on HIV/AIDS, especially as it appears to be putting an emphasis more on quantitative expansion of linkages to community groups than on ensuring that those groups have a clear, long-term commitment and capacity to act. The HR/Network needs to find ways of working with government initiatives on matters of outreach, mobilisation and training, to provide accurate knowledge and skills around prevention and care issues, and to ensure attention to human rights.

Institutionalise the concept of HIV/AIDS as an ethical and human rights issue in the regular work of the organisations, agencies and departments represented by the members.

It is important that the experience and knowledge gained by individual HR/Network members is elaborated, adapted and grounded in the work of their colleagues and constituencies; that it "cut across all the elements of their work". Without such grounding, sustained action on this dimension of HIV/AIDS will not happen. One way of doing this: to create sector-specific HR/Network "chapters" in the departments (provinces) e.g. where medical personnel in the community hospitals would provide in-service training, information exchange and moral support to doctors and nurses. Another suggestion: to hold more joint training between groups differently affected by the epidemic, but who have a common bond in improving practice. Thus, for example, training programmes involving medical personal and members of the Community Network on what the rights and responsibilities of PWAs and medical staff are under the AIDS law and how they can work together most effectively.

Build a better, more coherent and reliable, relationship with the UN system

While links to the UNDP country office have been positive, others have been more sporadic. In general, there is a sense that collaborations should be more co-ordinated, transparent and equal. Though members of the Foundation-cum-HR/Network are on different UNAIDS Technical and Theme groups, concern persists that they are not being given the recognition they have earned as a primary partner in HIV/AIDS issues in the country; that the considerable capacities and coherence they bring as an established network are not recognised; and that, too often, UN interventions and projects work on the basis of imposed alliances rather than building on those which are already well established. These are the kinds of issues a review of the UN-HR/Network connection should address.

Undertake broadly-based assessments

It is important that the HR/Network "take stock"; that it reassess what it has done; what the current needs, gaps and resources with respect to HIV/AIDS and human rights are; and how its own capacities fit into these. This could take the form of a situation analysis, looking at the evolution of the epidemic and of the human rights issues within it, identification of key actors and potential partners together with possibilities for collaboration. Such an assessment should be an overarching task for the HR/Network, a means of focussing, informing and guiding other recommendations. 27

 

 

9. Suggestions for Assessing Networks

 

Examples of Questions to Consider in Assessing Networks

  • Has sufficient investment been made in understanding the context and the roles of different actors?
  • Is an existing national body - governmental or non-governmental - committed to the network to the extent of factoring activities into their own annual plans and allocating their own resources?
  • Are there specific characteristics of the network, including linkages between members that appear to increase or to constrain effectiveness?
  • Are there particular characteristics, of members and of the particular field of endeavour of a network, that appear to increase or decrease the likelihood of effectiveness and impact?
  • Are there donor policies and practices that appear to contribute to, or constrain, network effectiveness, impact and viability?
  • Can a useful distinction be made between the creation of networks and the promotion of networking approaches?

 

Evaluating success

  • What mechanisms or procedures have been used to enable donors and network coordinators and members to develop common expectations and useful evaluation indicators?
  • What indicators of network success have been most meaningful to network stakeholders?
  • What are generic indicators of network success?
  • What are current good practices for:

    - measuring network outputs?
    - measuring network impacts?
    - measuring the quality of a network’s work?

 

Identifying good practices

Networks

  • In what ways have networks and their members handled the following:
  • Identifying initial members
  • Making provisions for growth in membership
  • Establishing agreed forms of governance for the network that might include:

    - Identifying goals/objectives/challenges, including introduction of new issues/target areas of work beyond those originally identified
    - Creating and agreeing upon annual work plans, annual goals and/or annual targets
    - Developing strategies and raising funds
    - Translating learning accomplished through the network into advocacy and policy and programme change

 

Donors

  • In what ways have donors effectively handled the following:

    - identifying substantive areas around which networks might be organized, and be effective
    - catalyzing the creation/start-up of networks
    - assisting networks to build their own capacity, including arrangements for self-governance
    - transferring experiences and practices without imposition of pre-set formats?
    - avoiding dependency on donor funding?

  • Is the donor sufficiently committed to the activities to allocate not just funds, but time and staff to "partner" the initiative in ways that may appear intangible but are essential to nurture networks?
  • Has the donor secured sufficient commitment at the right levels within the agency (particularly at the country level, where there is a country office)?
  • Has the donor sufficiently accounted for resource and capacity issues in programme design?
  • Has the donor given sufficient importance to monitoring and evaluation?

 

Legal, Ethical and Human Rights Networks

  • What has been the need/demand for legal, ethical and human rights activities in order to create effective responses to the epidemic?
  • To what extent have networks met the need?
  • What have been the achievements, successes and impact of the networks?
  • What changes have the networks brought about in terms of the nature and effectiveness of the ethical, legal and human rights dimensions of the national or regional response?
  • Who are the typical members of the network? To what extent are members from outside the legal profession and agencies concerned with human rights?
  • How have networks been able to integrate PLWHA and address their needs, including fostering greater provision of services for PLWHA?
  • What are the lessons learned with regard to the identification of specific groups whose participation is important at the earliest stages of network creation?
  • What are existing national, regional and international bodies and institutions doing to deal with human rights, law and ethics?

 

Suggested Key Participants in a Network Assessment

  • UN Resident Coordinator/UNDP Resident Representative
  • National AIDS control programme/committee/secretariat
  • The UN Theme group on HIV/AIDS, and other UN agencies
  • The UN technical working group on HIV/AIDS where available
  • Members of national and regional networks on Legal, Ethical and Human Rights
  • PLWHA Support groups and networks
  • Major NGOs, CBOs working in development, working on HIV/AIDS prevention and care and working on human rights issues in the country
  • Relevant government ministries and sectors
  • Faith communities and community leaders of influence
  • National projects of UNDP and other UNAIDS co-sponsors
  • Inter-country projects of UNDP
  • Associations of parliamentarians, women and other groups
  • Lawyers or Bar Associations
  • National Human Rights Commissions
  • Ombudsperson
  • Law Commissioners

 

 

Appendix 1:

International Guidelines on HIV/AIDS and Human Rights 28

Second International Consultation
on HIV/AIDS and Human Rights

Geneva, 23-25 September 1996

(Organized jointly by the Office of the United Nations High Commissioner for Human Rights
and the Joint United Nations Programme on HIV/AIDS)

NOTE

Material contained in this publication may be freely quoted or reprinted, provided credit is given and a copy containing the reprinted material is sent to the Office of the United Nations High Commissioner for Human Rights, 1211 Geneva 10, and to UNAIDS, 1211 Geneva 27, Switzerland.

* *

The designations employed and the presentation of the material in this publication do not imply expression of any opinion whatsoever on the part of the Secretariat of the United Nations concerning the legal status of any country, territory, city or area, or of its authorities, or concerning the delimitation of its frontiers or boundaries.

 

Foreword

There is increasing recognition that public health often provides an added and compelling justification for safeguarding human rights, despite the respect, protection and fulfilment which they merit in their own right. In the context of HIV/AIDS, an environment in which human rights are respected ensures that vulnerability to HIV/AIDS is reduced, those infected with and affected by HIV/AIDS live a life of dignity without discrimination and the personal and societal impact of HIV infection is alleviated.

The guidelines in this document are the product of the Second International Consultation on HIV/AIDS and Human Rights, organized jointly by the United Nations Office of the High Commissioner for Human Rights and the Joint United Nations Programme on HIV/AIDS (UNAIDS). They provide an important means for supporting both human rights and public health, emphasizing the synergy between these two areas. These guidelines offer concrete measures that could be taken to protect human rights and health where HIV/AIDS is concerned.

The measures in the guidelines follow three broad and interconnected approaches: (1) improvement of governmental capacity for acknowledging the government's responsibility for multisectoral coordination and accountability; (2) widespread reform of laws and legal support services, with a focus on anti-discrimination, protection of public health, and improvement of the status of women, children and marginalized groups; and (3) support for increased private sector and community participation in the response to HIV/AIDS, including building the capacity and responsibility of civil society to respond ethically and effectively.

The guidelines call on governments and communities to confront difficult issues with a sense of urgency, underlining the universality and indivisibility of human rights. Fulfilment of the State's obligations with regard to the rights to non-discrimination, health, information, education, employment, social welfare and public participation is crucial to reducing vulnerability to HIV infection and to ensuring humane care and support for those infected and affected by HIV/AIDS.

The guidelines are the product of 50 years of international human rights machinery and 15 years of practical experience in responding to HIV/AIDS. The challenge we face is to integrate efforts in the areas of HIV/AIDS and human rights by building the capacity of AIDS service organizations to deal with human rights, sensitizing and giving training in HIV/AIDS matters to non-governmental organizations that specialize in human rights concerns, and encouraging United Nations human rights bodies and mechanisms to incorporate HIV/AIDS issues into their monitoring functions and general mandates.

We are grateful to the experts from governments, voluntary bodies, AIDS service organizations, networks of people living with HIV/AIDS, academia, and regional bodies and agencies who took part in the international consultation at which these guidelines were developed. We urge governments, non-governmental organizations, the United Nations system and regional intergovernmental bodies to disseminate and implement these guidelines, thus demonstrating their commitment to human rights in relation to HIV/AIDS.

Peter Piot
Executive Director Joint United Nations Programme on HIV/AIDS

Mary Robinson
United Nations High Commissioner for Human Rights

 

Glossary of terms

  • AIDS acquired immunodeficiency syndrome
  • ASO AIDS service organization
  • CBO community-based organization
  • HIV human immunodeficiency virus
  • IGO intergovernmental organization
  • NGO non-governmental organization
  • PLHA person living with HIV/AIDS: a person infected with HIV

 

Introduction

  1. The Commission on Human Rights, at its fifty-second session, in its resolution 1996/43 of 19 April 1996, requested the then United Nations High Commissioner for Human Rights, inter alia, to continue his efforts, in Cupertino with UNAIDS and non-governmental organisations, as well as groups of people living with HIV/AIDS, towards the elaboration of guidelines on promoting and protecting respect for human rights in the context of HIV/AIDS. In the same resolution, the Commission requested that the Secretary-General prepare, for the consideration of the Commission at its fifty-third session, a report on the above-mentioned guidelines, including the outcome of the second expert consultation on human rights and AIDS, and on their international dissemination.
  2. The call for guidelines on human rights and HIV/AIDS was based on a recommendation contained in an earlier report of the Secretary-General to the Commission at its fifty-first session (E/CN.4/1995/45, para. 135), which stated that "the development of such guidelines or principles could provide an international framework for discussion of human rights considerations at the national, regional and international levels in order to arrive at a more comprehensive understanding of the complex relationship between the public health rationale and the human rights rationale of HIV/AIDS. In particular, Governments could benefit from guidelines that outline clearly how human rights standards apply in the area of HIV/AIDS and indicate concrete and specific measures, both in terms of legislation and practice, that should be undertaken".
  3. In response to the above requests, the Office of the United Nations High Commissioner for Human Rights and the Joint United Nations Programme on HIV/AIDS (UNAIDS) convened the Second International Consultation on HIV/AIDS and Human Rights in Geneva, from 23 to 25 September 1996. It may be recalled that the first International Consultation on AIDS and Human Rights was organized by the then United Nations Centre for Human Rights, in Cupertino with the World Health Organization, in Geneva from 26 to 28 July 1989. In the report of the first consultation (HR/PUB/90/2), the elaboration of guidelines to assist policy makers and others in compliance with inter-national human rights standards regarding law, administrative practice and policy had already been proposed.
  4. The Second International Consultation on HIV/AIDS and Human Rights (E/CN.4/1997/37) brought together 35 experts in the field of AIDS and human rights, comprising government officials and staff of national AIDS programmes, people living with HIV/AIDS (PLHAs), human rights activists, academics, representatives of regional and national networks on ethics, law, human rights and HIV, and representatives of United Nations bodies and agencies, non-governmental organisations and AIDS service organisations (ASOs). The list of participants is attached as annex II to the present document.
  5. The Consultation had before it five background papers which had been commissioned for the purpose of eliciting specific regional and thematic experiences and concerns regarding HIV/AIDS and human rights, prepared by the following non-governmental organisations and networks of people living with HIV/AIDS: Alternative Law Research and Development Center (ALTERLAW) (Philippines); Network of African People Living with HIV/AIDS (NAP+) (Zambia); Colectivo Sol (Mexico); International Community of Women Living with HIV/AIDS (ICW+) (global) and Global Network of People Living with HIV/AIDS (GNP+) (global). The groups were asked, each within its specific context, to identify the most important human rights principles and concerns in the context of HIV/AIDS, as well as concrete measures that States could take to protect HIV-related human rights.
  6. The Consultation also had before it draft guidelines on HIV/AIDS and human rights, prepared by Ms. Helen Watchirs (Australia) on the basis of the five regional background papers and other materials consulted. In addition, the international association Rights and Humanity conducted a global survey to review existing strategies and identify other measures necessary to ensure respect for human rights in the context of HIV/AIDS. An analysis of the 40 responses received to the survey was presented to the Consultation.
  7. With regard to its methods of work, the Consultation formed four working groups to discuss and finalize the draft guidelines, focusing on the theoretical framework (WG.1), the institutional responsibilities and processes (WG.2), law review, reform and support services (WG.3) and on the promotion of a supportive and enabling environment (WG.4), respectively. In the second part of the Consultation, participants were divided into a further three working groups in order to discuss and elaborate recommendations concerning strategies to ensure the dissemination and implementation of the guidelines, according to different actors, as follows: States (WG.6), United Nations system and regional intergovernmental bodies (WG.7) and non-governmental organisations (WG.8).

 

Guidelines on HIV/AIDS and Human Rights

8. This document contains guidelines adopted at the Second International Consultation on HIV/AIDS and Human Rights, held in Geneva from 23 to 25 September 1996, to assist States in creating a positive, rights-based response to HIV/AIDS that is effective in reducing the transmission and impact of HIV/AIDS and consistent with human rights and fundamental freedoms.

9. The elaboration of such guidelines was first considered by the 1989 International Consultation on AIDS and Human Rights, organized jointly by the then United Nations Centre for Human Rights and the World Health Organization. 29 The United Nations Commission on Human Rights and its Sub-Commission on Prevention of Discrimination and Protection of Minorities have repeatedly reiterated the need for guidelines. Increasingly, the international community has recognized the need for elaborating further how existing human rights principles apply in the context of HIV/AIDS and for providing examples of concrete activities to be undertaken by States to protect human rights and public health in the context of HIV/AIDS.

10. The purpose of these Guidelines is to assist States in translating international human rights norms into practical observance in the context of HIV/AIDS. To this end, the Guidelines consist of two parts: first, the human rights principles underlying a positive response to HIV/AIDS and second, action-oriented measures to be employed by Governments in the areas of law, administrative policy and practice that will protect human rights and achieve HIV-related public health goals.

11. The Guidelines recognize that States bring to the HIV/AIDS epidemic different economic, social and cultural values, traditions and practices-a diversity which should be celebrated as a rich resource for an effective response to HIV/AIDS. In order to benefit from this diversity, a process of participatory consultation and Cupertino was undertaken in the drafting of the Guidelines, so that the Guidelines reflect the experience of people affected by the epidemic, address relevant needs and incorporate regional perspectives. Furthermore, the Guidelines reaffirm that diverse responses can and should be designed within the context of universal human rights standards.

12. It is intended that the principal users of the Guidelines will be States, in the persons of legislators and government policy makers, including officials involved in national AIDS programmes and relevant departments and ministries, such as health, foreign affairs, justice, interior, employment, welfare and education. Other users who will benefit from the Guidelines include intergovernmental organisations (IGOs), non-governmental organisations (NGOs), networks of persons living with HIV/AIDS (PLHAs), community-based organisations (CBOs), networks on ethics, law, human rights and HIV and AIDS service organisations (ASOs). The broadest possible audience of users of the Guidelines will maximize their impact and make their content a reality.

13. The Guidelines address many difficult and complex issues, some of which may or may not be relevant to the situation in a particular country. For these reasons, it is essential that the Guidelines be taken by critical actors at the national and community level and considered in a process of dialogue involving a broad spectrum of those most directly affected by the issues addressed in the Guidelines. Such a consultative process will enable Governments and communities to consider how the Guidelines are specifically relevant in their country, assess priority issues presented by the Guidelines and devise effective ways to implement the Guidelines in their respective contexts.

14. In implementing the Guidelines, it should be borne in mind that achieving international Cupertino in solving problems of an economic, social, cultural or humanitarian character and promoting and encouraging respect for human rights and for fundamental freedoms for all, is one of the principal objectives of the United Nations. In this sense, international Cupertino, including financial and technical support, is a duty of States in the context of the HIV/AIDS epidemic and industrialized countries are encouraged to act in a spirit of solidarity in assisting developing countries to meet the challenges of implementing the Guidelines.

 

Summary

15. HIV/AIDS continues to spread throughout the world at an alarming rate. The widespread abuse of human rights and fundamental freedoms associated with HIV/AIDS has emerged in all parts of the world in the wake of the epidemic. In response to this situation the experts at the Second International Consultation on HIV/AIDS and Human Rights concluded the following:

(a) The protection of human rights is essential to safeguard human dignity in the context of HIV/AIDS and to ensure an effective, rights-based response to HIV/AIDS. An effective response requires the implementation of all human rights, civil and political, economic, social and cultural, and fundamental freedoms of all people, in accordance with existing international human rights standards;

(b) Public health interests do not conflict with human rights. On the contrary, it has been recognized that when human rights are protected, fewer people become infected and those living with HIV/AIDS and their families can better cope with HIV/AIDS;

(c) A rights-based, effective response to the HIV/AIDS epidemic involves establishing appropriate governmental institutional responsibilities, implementing law reform and support services and promoting a supportive environment for groups vulnerable to HIV/AIDS and for those living with HIV/AIDS;

(d) In the context of HIV/AIDS, international human rights norms and pragmatic public health goals require States to consider measures that may be considered controversial, particularly regarding the status of women and children, sex workers, injecting drug users and men having sex with men. It is, however, the responsibility of all States to identify how they can best meet their human rights obligations and protect public health within their specific political, cultural and religious contexts;

(e) Although States have primary responsibility for implementing strategies that protect human rights and public health, United Nations bodies, agencies and programmes, regional intergovernmental bodies and non-governmental organisations, including networks of people living with HIV/AIDS, play critical roles in this regard.

16. The Consultation adopted Guidelines on HIV/AIDS and Human Rights, the purpose of which is to translate international human rights norms into practical observance in the context of HIV/AIDS. To this end, the Guidelines consist of two parts: first, the human rights principles underlying a positive response to HIV/AIDS and second, action-oriented measures to be employed by Governments in the areas of law, administrative policy and practice that will protect human rights and achieve HIV-related public health goals.

17. There are many steps that States can take to protect HIV-related human rights and to achieve public health goals. The 12 Guidelines elaborated by the Consultation for States to implement an effective, rights-based response are summarized below.

GUIDELINE 1: States should establish an effective national framework for their response to HIV/AIDS which ensures a coordinated, participatory, transparent and accountable approach, integrating HIV/AIDS policy and programme responsibilities across all branches of government.

GUIDELINE 2: States should ensure, through political and financial support, that community consultation occurs in all phases of HIV/AIDS policy design, pro-gramme implementation and evaluation and that community organisations are enabled to carry out their activities, including in the field of ethics, law and human rights, effectively.

GUIDELINE 3: States should review and reform public health laws to ensure that they adequately address public health issues raised by HIV/AIDS, that their provisions applicable to casually transmitted diseases are not inappropriately applied to HIV/AIDS and that they are consistent with international human rights obligations.

GUIDELINE 4: States should review and reform criminal laws and correctional systems to ensure that they are consistent with international human rights obligations and are not misused in the context of HIV/AIDS or targeted against vulnerable groups.

GUIDELINE 5: States should enact or strengthen anti-discrimination and other protective laws that protect vulnerable groups, people living with HIV/AIDS and people with disabilities from discrimination in both the public and private sectors, ensure privacy and confidentiality and ethics in research involving human subjects, emphasize education and conciliation, and provide for speedy and effective administrative and civil remedies.

GUIDELINE 6: States should enact legislation to provide for the regulation of HIV-related goods, services and information, so as to ensure widespread availability of qualitative prevention measures and services, adequate HIV prevention and care information and safe and effective medication at an affordable price.

GUIDELINE 7: States should implement and support legal support services that will educate people affected by HIV/AIDS about their rights, provide free legal services to enforce those rights, develop expertise on HIV-related legal issues and utilize means of protection in addition to the courts, such as offices of ministries of justice, ombudspersons, health complaint units and human rights commissions.

GUIDELINE 8: States, in collaboration with and through the community, should promote a supportive and enabling environment for women, children and other vulnerable groups by addressing underlying prejudices and inequalities through community dialogue, specially designed social and health services and support to community groups.

GUIDELINE 9: States should promote the wide and ongoing distribution of creative education, training and media programmes explicitly designed to change attitudes of discrimination and stigmatization associated with HIV/AIDS to understanding and acceptance.

GUIDELINE 10: States should ensure that government and the private sector develop codes of conduct regarding HIV/AIDS issues that translate human rights principles into codes of professional responsibility and practice, with accompanying mechanisms to implement and enforce these codes.

GUIDELINE 11: States should ensure monitoring and enforcement mechanisms to guarantee the protection of HIV-related human rights, including those of people living with HIV/AIDS, their families and communities.

GUIDELINE 12: States should cooperate through all relevant programmes and agencies of the United Nations system, including UNAIDS, to share knowledge and experience concerning HIV-related human rights issues and should ensure effective mechanisms to protect human rights in the context of HIV/AIDS at international level.

 

 

Appendix 2:

References & Resources

 

References

Bernard, Anne K., IDRC Networks: An Ethnographic Perspective, International Development Research Centre, Ottawa, 1996.

Bernard, Anne K., Report on 12 - 27 April 1999 Mission to the Philippines and Thailand; UNDP internal document.

Bernard, Anne K., Report on 15 - 24 June 1999 Mission to Uganda and Kenya; UNDP internal document.

Hamblin, Julie, "The Role of the Law in HIV and AIDS Policy", AIDS 1991 Supplement of Current Science, reprinted by UNDP/HDP as Issues Paper No. 11, 1991

Hamblin, Julie, "People Living with HIV: The Law, Ethics and Discrimination", Plenary Presentation to the 2nd International Congress on AIDS in Asia and the Pacific, New Delhi, 8-12 November 1992, published by UNDP/HDP as Issues Paper No 4, 1992.

Hamblin, Julie, Report on 11 - 15 April 1999 Mission to the Philippines; UNDP internal document.

Heeks, Richard, "The Tyranny of Participation in Information Systems: Learning from Development Projects", Development Informatics Working Paper Series, Working Paper No. 4, University of Manchester, Institute for Development Policy and Management, 1999. http://www.man.ac.uk/idpm

International Council of AIDS Service Organizations (ICASO), HIV/AIDS Networking Guide, First Edition, Toronto, 1997. www.icaso.org

Kante, Babacar, Nsubuga, Yusuf, Nzegwu, Femi, and Odhiambo, Dorothy, Evaluation of the African Network on Ethics, Law, Human Rights, and HIV, 27 January - 11 February 1999. Internal UNDP document.

Madon, Shirin, "International NGOs: Networking, Information Flows and Learning", Development Informatics Working Paper Series, Working Paper No. 8, University of Manchester, Institute for Development Policy and Management, 1999.

United Nations Development Programme, HIV and Development Programme, "Legal and Ethical Networking: Enabling a Community Response", 1996. See the UNDP/HDP website www.undp.org/hiv for other publications on HIV/AIDS and human rights.

 

Resources

Human Rights and Sustainable Human Development

Integrating human rights with sustainable human development A UNDP policy document, United Nations Development Programme, January 1998

Human Rights in Action - Developing Partnerships Between Government and Civil Society - Our Unique Non-Confrontational Approach in Cambodia, Kassie Neou

Human Development Report Office Occasional Papers 35, 1999

Human Rights and Human Development - Thailand Country Study

Vitit Muntarbhorn, Human Development Report Office Occasional Papers 36, 1999

Survey of UNDP Activities in Human Rights

Management Development and Governance Division, Bureau for Development Policy United Nations Development Programme, August 1999

Human Rights and HIV/AIDS

The UNAIDS Guide to the United nations Human Rights Machinery for AIDS service organizations, people living with HIV/AIDS, and others working in the area of HIV/AIDS and human rights, UNAIDS, 1997

HIV/AIDS and Human Rights International Guidelines, OHCHR, UNAIDS, United Nations, 1998

An Advocate's Guide to the International Guidelines on HIV/AIDS and Human Rights, The International Council of AIDS Service Organizations (ICASO), June 1998

NGO Summary of the International Guidelines on HIV/AIDS and Human Rights

The International Council of AIDS Service Organizations, June 1998

The ICASO Plan on Human Rights, Social Equity and HIV/AIDS

The International Council of AIDS Service Organizations (ICASO), June 1998

Handbook for Legislators on HIV/AIDS, Law and Human Rights: Action to Combat HIV/AIDS in View of its Devastating Human, Economic and Social Impact, UNAIDS/IPU, 1999

Networking

HIV/AIDS Networking Guide: A Comprehensive resource for individuals and organizations who wish to build, strengthen or sustain a network

The International Council of AIDS Service Organizations (ICASO), 1997

 

Website Addresses

UNDP http://www.undp.org

OHCHR http://un.org

UNAIDS http://www.unaids.org

ICASO http://www.icaso.org

 

Endnotes

  1. UNDCP, the UN International Drug Control Programme has since joined the group of UNAIDS co-sponsors.
  2. Publications have continued to be an important feature of the work of HDP over the years. The final section of this Guide includes details of these together with papers and resources produced by other agencies.
  3. This thinking is reflected, in particular, in the paper produced by the global HIV and Development Programme, Legal and Ethical Networking: Enabling a Community Response, 1996
  4. ICASO, p. 2.
  5. IDRC Networks: An Ethnographic Perspective, p. 7.
  6. Bernard Review of IDRC Networks (p. 6).
  7. Bernard, IDRC p. 4.
  8. Law, Ethics & HIV, Proceedings of the UNDP Intercountry Consultation, Cebu, Philippines, 3-6 May 1993
  9. HIV Law Ethics and Human Rights, ed. D.C. Jayasuriya, December 1995
    HIV Law and Law Reform, Asia and the Pacific, ed. D.C. Jayasuriya, September 1995
  10. The full details of the framework are provided in the report of the meeting, published December 1997.
  11. A detailed case study of the Nicaraguan experience is included in this guide and can be found on page 37.
  12. HR/PUB/98/1
  13. UNAIDS/99.48E
  14. UNAIDS/97.5
  15. UNAIDS/00.07E, May 2000
  16. Of the 18 countries that participated in the Consultation, 13 were from Asia and the Pacific, two were from Latin America, and one from Africa.
  17. with funding from the Dutch government
  18. Nine African countries participated in the Dakar Inter-Country Consultation, along with several international organizations and NGOs, and the Asian and Latin American Networks on HIV, Ethics, Law and Human Rights.
  19. Evaluation Report by Babacar Kante, et al, February 1999.
  20. Bernard 1999 mission report.
  21. UNDAF (UN Development Assistance Framework) is a UN system wide initiative designed to promote more coherent and collaborative support to national development strategies. UNAIDS has also launched National Strategic Planning Frameworks in over 40 countries in support of a more coherent, multisectoral approach to the epidemic.
  22. For further information on the HR/Network, contact: Fundación Nimehuatzin, Apartado A-262, Managua, Nicaragua, e-mail: nimehuat@ibw.com.ni
  23. To help readers distinguish the HR/Network from the other networks referred to in the text, it will be capitalized and italicized.
  24. In addition to the HR/Network, the Foundation also sustains two other networks: a Community Network for Human Rights in the face of HIV/AIDS and the Nicaraguan Network for Communication and Human Rights in the face of AIDS facilitates access to and sharing of information about HIV/AIDS among people in the media - a professional exchange network rather than a closely interactive social arrangement.
  25. One member of the Communication Network has developed a radio programme on HIV/AIDS, human rights and the new law. "Agenda for the Third Millennium" is designed to be broadcast in a series of one-hour slots, targeting a cross-section of the general public. It includes background and orientation pieces on AIDS and human rights as these obtain internationally and locally; and a phone-in component for questions to be answered by specialists. Radio is a critical medium for reaching a broad public, providing an anonymous forum of guided information on the characteristics of HIV and the rights and responsibilities of people with respect to it. Funding for the broadcast has not yet been found.
  26. Factors are analytical constructs; as such they are presented here as discrete elements. In the real life of a network, of course, they are highly interactive. Factors such as quality of leadership, characteristics of members and level of ownership are in many cases related as cause and effect and cannot be separated one from the another.
  27. For example, while the aim of institutionalising awareness around HIV/AIDS and human rights is obviously a critical matter, it is not necessarily best, or solely, done through a network mechanism. The organisational change and capacity development implied by institutionalisation require sustained, regular and cumulative learning intervention which may be delivered best through longer-term and better-resourced programmes of work. These are not typically the strength of networks. In this type of initiative, then, it will be important for an evaluation to consider how donors might support it -- perhaps not through the Network as a whole, but directly with its individual member organisations.
  28. Full text of the document available at http://www.unaids.org
  29. Report of an International Consultation on AIDS and Human Rights, Geneva, 26 to 28 July 1989 (HR/PUB/90/2).