Transforming the National AIDS Response - Advancing Women's Leadership and Participation
←
→
Page content transcription
If your browser does not render page correctly, please read the page content below
Transforming the National AIDS Response Advancing Women’s Leadership and Participation
UNIFEM (now UN Women) is the The ATHENA Network was created to
women’s fund at the United Nations. It advance gender equity and human rights
provides financial and technical assis- in the global response to HIV and AIDS.
tance to innovative programmes and Because gender inequity fuels HIV and
strategies to foster women’s empower- HIV fuels gender inequity, it is imperative
ment and gender equality. Placing the that women and girls – particularly those
advancement of women’s human rights living with HIV – speak out, set priorities
at the centre of all of its efforts, UNIFEM for action and lead the response. The
(now UN Women) focuses on reducing Barcelona Bill of Rights, promulgated by
feminized poverty; ending violence partners at the 2002 International AIDS
against women; reversing the spread of Conference, is ATHENA’s framework for
HIV/AIDS among women and girls; and action. Its mission is to:
achieving gender equality in democratic
governance in times of peace as well • Advance the recognition, protection and
as war. fulfilment of women’s and girls’ human
rights, comprehensively and inclusively,
UNIFEM (now UN Women) brings gender as a fundamental component of the
equality and human rights perspectives response to HIV and AIDS.
to its work on women and HIV and AIDS,
spearheading strategies that make clear • Ensure gender equity in HIV-related
links to underlying factors such as vio- research, prevention, diagnosis, treat-
lence against women, feminized poverty ment, care and development interven-
and women’s limited voice in decision- tions based on a gendered analysis.
making. UNIFEM (now UN Women) has
contributed to integrating gender aspects • Promote and facilitate the leadership of
into the plans and policies developed women and girls, especially those living
by national AIDS councils in more than with HIV, in all aspects of the response
35 countries as well as into regional to HIV and AIDS.
programmes.
• Bridge the communities around the
world that are addressing gender,
human rights, sexual and reproductive
health and rights, and HIV.
© UN Women 2011
Transforming the National AIDS Response Advancing Women’s Leadership and Participation
Acknowledgements
Thanks are due to all the UNIFEM (now Last, but certainly not least, tribute
UN Women) staff and ATHENA Network must be paid to the extraordinary women
members for spearheading this initiative and men who work tirelessly to realize a
and championing the leadership of HIV- world where all women enjoy the right
positive women in the AIDS response. to participate and lead in all aspects of
Thanks also to key civil society, United their lives, as well as to the institutional
Nations and government partners, who contributors to this endeavour:
gave so generously of their time and
expertise to make this review come to ATHENA Network
life and whose daily work manifests the AIDS Legal Network
strength that women’s participation and Coalition for a Blueprint for Action on
leadership bring to the AIDS response. Women and Girls and HIV
Thanks also to the International Center Huairou Commission
for Research on Women (ICRW) and the Ford Foundation
Centre for Development and Population Gestos
Activities (CEDPA), which led a series of Global Coalition on Women
in-depth interviews with women leaders and AIDS (GCWA)
from around the world under the Global Fund to Fight AIDS, Tuberculosis
‘Advancing Women’s Leadership and and Malaria Secretariat
Advocacy for AIDS Action’ initiative fund- International Community of Women
ed by the Ford Foundation, the findings Living with HIV/AIDS (ICW)
of which were fed into this report. The ICW Latina
response to the global survey and to Ipas
requests for key informant interviews International Planned Parenthood
was overwhelming. Many thanks to the Federation (IPPF)
organizations and individuals who gave Living Together Institute
significant time and shared their expertise Namibia Women’s Health Network (NWHN)
so generously. Open Society Institute (OSI)
Open Society Initiative for Southern Africa
Special thanks are due to the lead (OSISA)
researcher and author, Tyler Crone. In Salamander Trust
addition, this work would not have been Sexual Violence Research Initiative (SVRI)
possible without the outstanding contribu- Society of Women and AIDS
tions and ongoing engagement of gender in Africa (SWAA)
and HIV advisors Nazneen Damji, Johanna Thai Women and AIDS Task Force
Kehler, Alessandra Nilo, Josefina Oraa, The Joint UN Programme on
Luisa Orza, Betsi Pendry, Marion Stevens, HIV/AIDS (UNAIDS)
Ida Susser, Reshma Trasi, MariJo Vazquez The Women’s Collective (TWC)
and Alice Welbourn. Thanks also to Ghada United Nations Development
Jiha for her research support and Tina Programme (UNDP)
Johnson for copy editing. United Nations Population Fund (UNFPA)
UNIFEM (now UN Women)
Appreciation is extended to UNDP Regional Offices
and UNIFEM (now UN Women) for their Volunteer Services Organisation (VSO)
financial and technical support. Women WON’T Wait (WWW)
Women Organized to Respond to
Life-threatening Disease (WORLD)
World Young Women’s Christian
Association (World YWCA)
ii ACKNOWLEDGEMENTS
Table of Contents
Acknowledgements................................................................................................................ii
Acronyms and abbreviations ..............................................................................................iv
Methodology ..........................................................................................................................v
1. Introduction ........................................................................................................................1
2. Rationale for and Status of Women’s Participation in the AIDS Response ................5
3. Women’s Engagement in National AIDS Responses: Case Studies ..........................13
4. Recommendations for Advancing Women’s Leadership and Participation ..............31
Annexes
Annex I. Interview and survey questions ..........................................................................33
Annex II. Key informants and respondents ......................................................................35
List of boxes
Box 1: Bringing women to the table ....................................................................................2
Box 2: Women’s right to participate in HIV and AIDS decision-making ..........................6
Box 3: Analysis from a sample of key informant interviews with women leaders ........9
Box 4: “If you’re not at the table, you’re on the menu” ..................................................25
Box 5: Reflections on positive women’s leadership ........................................................28
Promising Approaches
Knowledge is power ............................................................................................................14
Mobilize communities for change ......................................................................................16
Involve grassroots women ....................................................................................................17
Bring forward young women leaders ................................................................................18
Engender the national AIDS response ..............................................................................19
Building coalitions and alliances amongst key groups to facilitate greater
coherence ....................................................................................................................20
Tap the power of women’s voices ......................................................................................23
TRANSFORMING THE NATIONAL AIDS RESPONSE
Advancing Women’s Leadership and Participation
iiiAcronyms and abbreviations
CCM . . . . . . .Country Coordinating Mechanism
CEDPA . . . . .Centre for Development and Population Activities
GCWA . . . . .Global Coalition on Women and AIDS
GIPA . . . . . . .Greater Involvement of People Living with HIV/AIDS
ICRW . . . . . .International Center for Research on Women
ICW . . . . . . .International Community of Women Living with HIV/AIDS
M&E . . . . . . .monitoring and evaluation
MNCP . . . . .Movement of Positive Women Citizens, Brazil
NACA . . . . .National Agency for the Control of AIDS, Nigeria
NGO . . . . . . .non-governmental organization
NSP . . . . . . .National Strategic Plan for STIs and HIV and AIDS 2007–2011, South Africa
OSISA . . . . .Open Society Initiative for Southern Africa
PMTCT . . . . .Prevention of Mother-to-Child Transmission
PWMC . . . . .positive women monitoring change
PWN+ . . . . . .Positive Women’s Network, India
RNP+ . . . . . .National Network of People Living with HIV, Brazil
SAATHII . . . .Solidarity and Action Against The HIV Infection in India
SANAC . . . .South African National AIDS Council
TRP . . . . . . .Technical Review Panel, Global Fund to Fight AIDS, Tuberculosis and Malaria
UNAIDS . . . .Joint United Nations Programme on HIV/AIDS
UNDP . . . . . .United Nations Development Programme
UNIFEM . . . .United Nations Development Fund for Women
iv ACRONYMS AND ABBREVIATIONSMethodology
Data and cross-cutting analyses of women’s Development and Population Activities
representation and participation – including (CEDPA) under the ‘Advancing Women’s
networks of women living with HIV, Leadership and Advocacy for AIDS Action’
women’s rights organizations or grass- initiative.
roots women – are not readily available The interview questionnaire was
at the country, regional or global level. designed to assess respondents’ percep-
In order to begin to fill these information tions of challenges and opportunities
gaps and build a foundation for further women face with regard to participation
research, UNIFEM (now UN Women) com- and leadership in the response to HIV
missioned a review of women’s leader- and AIDS, strategies to enhance women’s
ship and participation in the AIDS participation and leadership, the role of
response at the national and global level civil society leadership on women and
in partnership with the ATHENA Network. AIDS, and capacity needs to strengthen
Extensive consultations were held women’s leadership and participation.
with institutional leaders such as UN The detailed interview template is
partners, the Global Fund to Fight AIDS, included in Annex I.
Tuberculosis and Malaria and the Global An extensive literature review as well
Coalition on Women and AIDS (GCWA) as the results from a global survey dis-
as well as civil society leaders and stake- seminated through listserves and global
holders at the community, national, and regional networks also informed the
regional and global levels. In addition, analysis. More than 100 responses were
specific input was sought from Brazil, received to the global survey, which was
India and South Africa to reflect the designed to gather information on chal-
variation in national level experiences. lenges and opportunities for women’s
In-depth interviews were held with participation and leadership as well as on
more than 100 key informants and their levels of participation and leadership
decision-makers by the lead researcher in various country mechanisms that deter-
and author, Tyler Crone (see Annex I). mine programmes, policies, priorities and
HIV and gender expert Alessandra Nilo funding. The survey is included in Annex I.
(Brazil), gender expert Josefina Oraa Lastly, extensive effort was invested in
(India) and women’s health expert Marion developing case studies that document
Stevens and human rights expert Johanna and analyse recent experience on
Kehler (South Africa) undertook in-depth enhancing women’s participation, espe-
interviews with key country-level stake- cially those living with HIV, in national
holders in their respective countries. In and global AIDS fora. All research and
addition, this report drew on a series of findings underwent a key stakeholder
in-depth interviews with 25 women lead- validation process. The final report was
ers from around the world conducted by authored by Tyler Crone and edited by
the International Center for Research on Nazneen Damji and Johanna Kehler.
Women (ICRW) and the Centre for
TRANSFORMING THE NATIONAL AIDS RESPONSE
Advancing Women’s Leadership and Participation
vChapter 1
Introduction
“The only way you will empower me is if we sit at the table
together and share our power.”
— MariJo Vazquez, past Chair of the International Community of Women Living with
HIV/AIDS (ICW) and Chair of the ATHENA Network
he critical importance of women’s HIV and AIDS reflects women’s priorities
T leadership and participation is
increasingly being recognized and
advanced as central to transforming the
and needs.
Drawing on the analysis of more than
100 key informant interviews as well as
HIV and AIDS response. The Agenda for 100 global survey responses, five key
Accelerated Country Action for Women, findings have emerged from this review:
Girls, Gender Equality and HIV, launched
“We will never
by UNAIDS in March 2010, champions 1) The involvement of affected communi- see a reduction
“strong, bold and diverse leadership for ties, particularly women living with HIV, in new infections
women, girls and gender equality, for their young women and grassroots women,
and deaths without
participation in decision-making, in the plays a critical role in defining sound
context of HIV” (see Box 1).1 The landmark policies and programmes. investing in the
2007 International Women’s Summit: strategic capacity
Women’s Leadership Making a Difference 2) Unrealized potential exists for
of the most directly
on HIV and AIDS, convened by the World strengthening women’s leadership
YWCA and the International Community and participation in the AIDS response, affected: HIV-positive
of Women Living with HIV/AIDS (ICW), is particularly by those most affected by women.”
another example of progress in this area – HIV and AIDS. — Terry McGovern,
as is the successful launch of the Global Ford Foundation
Coalition on Women and AIDS as a partner- 3) Significant barriers that prevent this
ship of non-governmental organizations participation, particularly of those most
(NGOs) and UN entities in 2004 (see Box 1). affected, include gender norms, stigma
Similarly, principal funders in the AIDS and discrimination, lack of access to
response, the Global Fund to Fight AIDS, resources, the burden of care and multi-
Tuberculosis and Malaria and PEPFAR, ple responsibilities in the home, lack of
are taking significant steps to engender access to information, lack of formal
their work. education and training, poor self-esteem
This report is an effort to better and gender-based violence.
understand where and in what ways
women, particularly those most affected 4) Even when women obtain a ‘seat at
by the epidemic, are participating in the table’, challenges to their meaning-
the response; the opportunities for and ful involvement include lack of trans-
challenges to their participation; and parent entry points, lack of capacity to
strategies that can be implemented and substantively participate in formal
steps taken to advance their full and processes, competing agendas in
meaningful participation at all levels in formal decision-making spheres
order to ensure that the response to and a lack of critical alliances.
TRANSFORMING THE NATIONAL AIDS RESPONSE
Advancing Women’s Leadership and Participation
1BOX
1 Bringing women to the table
UNAIDS Agenda for Accelerated The Global Coalition on Women
Country Action for Women, Girls, and AIDS
Gender Equality and HIV The Global Coalition on Women and
Recognizing the importance of greater AIDS (GCWA) is a worldwide alliance of
action to meet the urgent needs of civil society groups, networks of women
women, UNAIDS and UNIFEM (now living with HIV, women’s organizations,
UN Women) along with key experts, AIDS service organizations and the UN
civil society and government partners, system committed to strengthening
produced a framework to guide UN AIDS programming for women and
agencies at the country level to: girls. The GCWA seeks to mobilize part-
ners, decision-makers and society at
1) “Jointly produce information on and large to advance the AIDS response for
a better understanding of the specific women and girls at national level; influ-
needs and rights of women and girls ence the response through placing
in the context of HIV, so that national emerging or unaddressed issues firmly
AIDS programmes can respond more on global and national agendas; act by
effectively. reaching out to a broad array of part-
2) Turn political commitments into ners to gather the technical resources
increased resources and effective needed by countries and communities
actions, so that HIV programmes to address the programming challenges;
better respond to the needs of and empower women and girls to
women and girls. participate in and influence national
3) Mobilize leaders to create safer responses and build accountability for
environments in which women and results. It is particularly committed to
girls can feel empowered to exercise engaging women and girls living with
their human rights.”2 HIV as core partners in shaping its
advocacy. The GCWA advocates for
This framework is intended to inspire the involvement of women and girls
innovations to expand HIV-positive as decision-makers, contributors and
women’s voices in the HIV response. implementers of action as well as
beneficiaries of support.
5) Sustained investment in women as provides an overview of the challenges to
agents of change and in women’s women’s full and meaningful participation.
mobilization, such as support for Chapter 3 examines five case studies,
HIV-positive women’s networks, has three on specific countries (Brazil, India
proven successful in diverse regions and South Africa), one on the Global Fund
and settings. to Fight AIDS, Tuberculosis and Malaria
and one on accountability and monitor-
Chapter 2 looks at the rationale for and ing. The first study, on South Africa,
status of women’s participation in the demonstrates the challenge of full
AIDS response. It highlights the inter- involvement and meaningful participation
national declarations and commitments in an evolving political landscape, even
that have been made related to women’s when formal structures are established to
participation in decision-making as well facilitate this. Next, the study on Brazil
as civil society calls for action. It also explores the importance of bridging
2 CHAPTER 1movements, and the need for broader used by community, national and regional
recognition of the space HIV-positive women organizations to bolster women’s leader-
require within formal governmental struc- ship and participation. It also features
tures and social movements. The study comments from women leaders in HIV
on India examines the strategies employed and AIDS as a means of exploring the
to organize and collectively influence the question of meaningful involvement from
AIDS response by women living with different perspectives and through a vari-
HIV and shares key lessons. The fourth ety of mechanisms in the AIDS response.
study provides a snapshot of the Global Finally, the last chapter sets out a
Fund, outlining the opportunities for the number of recommendations for policy-
strengthened engagement of key stake- makers, programme implementers and a
holders and the robust involvement of broad range of stakeholders to ensure the
women in this essential funding mecha- promotion and full, meaningful involve-
nism. Lastly, the fifth study focuses on ment of women at all levels within the
the meaningful engagement of women, structures and processes of the HIV and
particularly positive women, in the AIDS response. This report is intended to
monitoring and evaluation of HIV spark greater attention to and inclusion of
policies and programmes. women, particularly those most affected
The report illustrates some of the by HIV and AIDS, as agents of change and
promising approaches that have been as experts through their experience.
TRANSFORMING THE NATIONAL AIDS RESPONSE
Advancing Women’s Leadership and Participation
3Chapter 2
Rationale for and Status
of Women’s Participation
in the AIDS Response
Women’s right to participate in AIDS decision-making and leadership,
HIV and AIDS decision-making this has not yet been realized. Women,
International agreements, including the particularly those most affected by
1995 Beijing Platform for Action, clearly the epidemic, do not shape the AIDS
establish women’s right to participate response globally or nationally with “First, we need to
fully in formal and informal decision- the same influence, weight and reach
raise awareness on
making structures. Women’s right to as men.
participate in HIV decision-making in human rights, and
particular is also recognized in several Why women’s participation also create an
international HIV and AIDS policies and is essential
environment where
frameworks, including the 1994 Declaration With continued new infections among
from the Paris AIDS Summit and the 2001 women, an increase in the proportion women can come and
Declaration of Commitment on HIV and of women living with HIV in regions talk freely and openly
AIDS from the historic United Nations such as the Caribbean and Asia and
about their needs and
General Assembly Special Session on the disproportionate burden women
HIV and AIDS (see Box 2). Civil society shoulder from the epidemic, national rights. At the same
statements – such as the 1992 Twelve governments and the global community time, we need to
Statements of the International Community have a clear mandate to embrace, set up a policy
of Women Living with HIV/AIDS (ICW), engage and strengthen the leadership
and participation of women and girls
that supports the
the 2002 Barcelona Bill of Rights, the
2005 Compact to End AIDS, the 2006 in the response. Involving women, involvement and
Panama Declaration of ICW Latina, particularly those most affected by the participation of
the 2007 Nairobi Call to Action, the epidemic, is both a means of empower-
women. Also, we
2008 Women Demand Action and ment and essential to ensuring that
Accountability Now Statement and the policies and programmes adequately need to sensitize
2010 Women ARISE platform – have and effectively respond to the realities policymakers about
affirmed time and again that women face.
the issue of women.”
As urged by the Executive Director of
— Mony Pen, Cambodian
“[b]ecause gender inequality fuels UNAIDS, Michel Sidibe, at the Fifty-fourth Community Network of
HIV/AIDS and HIV/AIDS fuels gender session of the Commission on the Status Women Living with
of Women, “…we need to invest much HIV/AIDS
inequality, it is imperative that women
and girls speak out, set priorities for more in the participation and leadership of
action and lead the global response to women and girls living with HIV, so that
the crisis.”3 they can gain access to decision-making
spaces and become ‘agents of change’ to
Yet, despite the clearly established right guide all stages of planning and imple-
of women to fully participate in HIV and mentation of our response to AIDS”.12
TRANSFORMING THE NATIONAL AIDS RESPONSE
Advancing Women’s Leadership and Participation
5BOX
2 Women’s right to participate in
HIV and AIDS decision-making
Declarations and Commitments The United Nation General Assembly
Declaration of Commitment on
The Paris Declaration, Paris AIDS HIV/AIDS, 27 June 2001, calls for:6
Summit, 1 December 1994 declares that 33. Acknowledging the particular role
governments:4 and significant contribution of people
IV. Are resolved to step up international living with HIV/AIDS, young people
cooperation through the following meas- and civil society actors in addressing
ures and initiatives: the problem of HIV/AIDS in all its
• Support a greater involvement of aspects and recognizing that their
people living with HIV/AIDS through full involvement and participation in
an initiative to strengthen the capacity design, planning, implementation and
and coordination of networks of people evaluation of programmes is crucial to
living with HIV/AIDS and community- the development of effective respons-
based organizations. By ensuring their es to the HIV/AIDS epidemic;
full involvement in our common
response to the pandemic at all – 37. By 2003, ensure the development
national, regional and global – levels, and implementation of multisectoral
this initiative will, in particular, stimu- national strategies and financing plans
late the creation of supportive political, for combating HIV/AIDS that address
legal and social environments. the epidemic in forthright terms;
• Support initiatives to reduce the vul- confront stigma, silence and denial;
nerability of women to HIV/AIDS by address gender and age-based
encouraging national and international dimensions of the epidemic; eliminate
efforts, aimed at the empowerment of discrimination and marginalization;
women: by raising their status and involve partnerships with civil society
eliminating adverse social, economic and the business sector and the full
and cultural factors; by ensuring their participation of people living with
participation in all the decision-making HIV/AIDS, those in vulnerable groups
and implementation processes which and people mostly at risk, particularly
concern them; and by establishing women and young people; are
linkages and strengthening the net- resourced to the extent possible from
works that promote women’s rights. national budgets without excluding
other sources, inter alia, international
The Beijing Declaration and Platform for cooperation; fully promote and protect
Action, United Nations Fourth World all human rights and fundamental free-
Conference on Women, 15 September doms, including the right to the high-
1995 affirms that:5 est attainable standard of physical and
1. Women’s empowerment and their mental health; integrate a gender per-
full participation on the basis of equali- spective; address risk, vulnerability,
ty in all spheres of society, including prevention, care, treatment and sup-
participation in the decision-making port and reduction of the impact of
process and access to power, are fun- the epidemic; and strengthen health,
damental for the achievement of education and legal system capacity;
equality, development and peace; …
6 CHAPTER 2Civil Society Calls for Action The Nairobi 2007 Call to Action
outlines:10
The 1992 Twelve Statements of ICW, to By taking leadership into our hands
improve the situation of women living and uniting in strength as a movement
with HIV and AIDS throughout the world, of women, we can lead the change we
call for: wish to see in the world. … The ten
10. Decision making power and critical areas for change are:
consultation at all levels of policy
and programmes affecting us. 1. Developing the leadership of
women and girls to respond to HIV
The 2002 Barcelona Bill of Rights states and AIDS…
that women and girls have the right:7
To lead and participate in all aspects of 2. Ensuring the meaningful involve-
politics, governance, decision-making, ment of women infected and affected
policy development and programme by HIV in relevant decision-making,
implementation. respecting our right to self determina-
tion and enabling our participation in
The 2005 With Women Worldwide: the development of AIDS strategies,
A Compact to End HIV/AIDS calls on programming and decision-making
decision-makers to:8 bodies.
Expand decision-making: Ensure
that women infected and affected The 2008 Women Demand Action
by HIV/AIDS, and women’s health and Accountability Now Statement
and rights advocates, are full partici- articulates:11
pants in decision-making, especially In all aspects of national, regional and
at the highest levels, so that decisions global AIDS responses it is essential to
reflect the realities and needs of ensure that the voices and experience
women. of people living with HIV and AIDS –
especially women and girls whose
The 2006 Panama Declaration states:9 voices are too often silenced – are
The path must, absolutely, include given prominent position in designing
people living with HIV and AIDS and scaling up the global AIDS
working alongside the most powerful response. We ask that specific mecha-
forces uniting all nations… In particu- nisms for civil society’s participation
lar, this must include women, young be set up; including ensuring women’s
girls and adolescents who are the vic- groups have a seat at the table when it
tims of poverty and exclusion, migrant comes to devising global, national and
women, women who are heads of local AIDS strategies.
household, drug users, sexual workers,
refugees, women in confinement and
women from indigenous groups …
We want ‘nothing for us without us’.
TRANSFORMING THE NATIONAL AIDS RESPONSE
Advancing Women’s Leadership and Participation
7This echoes the statement by Peter Piot, policy directives under consideration.
former Executive Director of UNAIDS, that, Participation is seen as a privilege, rather
“This trend of feminization is transforming than as a right, as meaningful, sustained
the AIDS epidemic and now it must equal- engagement. HIV-positive women leaders
ly transform our response to the epidemic. from Latin America have therefore boldly
Women must be at the table where AIDS embraced the position of “nothing for us
programmes are being decided”. 13 without us”.
Leading human rights and HIV advocate There is no consistent monitoring of
Louise Binder, who has been at the fore- involvement by key stakeholders in the
front of the movement of persons living AIDS response, and the deeper question
with HIV to increase access to HIV preven- of meaningful participation by those most
tion, treatment and care globally, explains: affected by the epidemic is even more dif-
ficult to assess. However, after an exten-
“Put simply, women know the disease sive review of existing data, research and
and the conditions of their lives in ways documentation along with lengthy in-
that no one else can fathom. Thus, their depth interviews of key stakeholders in
input is essential to ensure that policies Southern Africa, South Asia, Southeast
and programmes that may be well Asia, Latin America and elsewhere, the
intentioned and logical theoretically can evidence is clear. Although women are on
be implemented on a practical grass- the frontlines pioneering initiatives that
roots level. We can identify barriers and are central to the success of the AIDS
help solve them through policy or pro- response, they are not yet full participants
“Positive women gramme changes or through education in all levels of the response.
bring a unique and capacity building on the ground. For example, critical stakeholders
We are also knowledge exchange and representatives such as HIV-positive
experience, inside brokers to ensure sustainability and women, community-based care-givers
knowledge and a change as required to meet changing or women’s rights advocates are largely
drive to survive. needs and conditions.”14 absent from powerful agenda-setting
mechanisms such as the AIDS coordinating
Positive women need
The current situation authorities that dictate national AIDS
to be involved. Even Although there has been increasing atten- policies or the Country Coordinating
though the rhetoric is tion to and resources allocated for HIV Mechanisms (CCMs) of the Global Fund
and AIDS, as well as heightened debate to Fight AIDS, Tuberculosis and Malaria
changing, where is
around the ‘feminization’ of the epidemic, that largely control Global Fund processes
this happening?” women are still not full participants in the and access to its resources at the national
— Beri Hull, ICW Global AIDS response. As the Honourable Charity level. Further, women’s participation does
Ngilu, former Kenyan Minister for Health, not necessarily imply participation by or
stated at the 2007 International Women’s the representation of networks of women
Summit, “My dear sisters, where policies living with HIV, women’s rights organiza-
are being made, our faces are not at those tions or grassroots women’s groups. So,
tables”.15 This is particularly true for the even when gender parity is met, critical
women who are the most affected by stakeholder involvement may not be.
the epidemic. For too long HIV-positive Respondents consistently reported that
women or their networks have been even when women do hold a ‘seat at the
invited only after agendas have been set table’ – whether it be in formal decision-
or policy decisions taken, placing them making forums such as the CCM or at
in the role of reaction, disappointment a meeting of NGOs – their presence is
and complaint rather than in a position frequently contested or their expertise is
of proactive, constructive and creative looked to as only relevant to ‘women’s
contribution. Moreover, women are issues’ instead of as having a critical
invited to speak to ‘women’s issues’ only role to play as both speaking to issues
and are rarely asked to address broader of particular importance to women and
8 CHAPTER 2informing discussion around HIV and AIDS At the opening of the International
policy and agenda setting in general. Women’s Summit in Nairobi, Kenya, in
July 2007, Musimbi Kanyoro, speaking as
“Challenges faced by women in the then World YWCA General Secretary,
Namibia are that they are rarely involved said, “the leadership of positive women
in policy-making unless it is specifically is not negotiable”. If women are leading
on women’s issues. When involved, the response in important ways, and if “I call upon women
their work often goes unrecognized and calls for women’s full participation in the
of the world to stand
they have difficulty gaining access to or AIDS response have been made for over
being taken seriously by policy makers. 15 years, why is so much of women’s up and fight against
… [the] involvement of positive women involvement invisible? And why are violence and the
at country level CCM has been very women, particularly the most affected
spread of HIV and
difficult to secure any representation women, still absent from formal and
of women to get their voices heard informal decision-making forums? AIDS. Let’s not be
and their concerns addressed.”16 bound by our cultures,
Challenges to women’s full which can be
This perception of women’s limited involvement and meaningful
‘expertise’ not only denies women’s right participation changed. Only we
to participate, but also perpetuates a Even as women actively strive to lead have the power to
gendered understanding of ‘expertise’ or even participate in civil society or gov- change our lives
and involvement that fails to incorporate ernmental structures, significant barriers
women’s realities and needs in policy limit their capacity and reach. Interviews
and our cultures.”
and programme responses. with key informants cited gender norms, — Anita Isaacs, YWCA of
Namibia, International
Women’s Summit, 2007
BOX
3 Analysis from a sample of key
informant interviews
with women leaders in Southeast Asia, East Africa,
West Africa, Southern Africa and North America
The main barriers to women’s leadership Informants reported that these barriers
and participation in the AIDS response were manifested as women’s exclusion
cited by women interviewed were: from decision-making, women’s lack of
voice, poor information dissemination
• Cultural factors including gender to affected communities, abandonment
norms – 79% and divorce for women living with HIV,
• The stigma of HIV and AIDS – 58% and inadequate funding to implement
• Lack of access to resources and programmes or access to resources to
economic disempowerment – 58% support advocacy.
• Lack of access to information and
knowledge – 46% Informants all agreed that support for
• The burden of care-giving and women’s mobilization, including invest-
women’s multiple responsibilities in ment in capacity building and funding
the home – 46% for networks for women living with
• Illiteracy – 46% HIV, is a key strategy to overcome
• Lack of self-esteem – 25% these barriers.
TRANSFORMING THE NATIONAL AIDS RESPONSE
Advancing Women’s Leadership and Participation
9stigma, lack of access to resources and including care-giving, are neither recog-
“Many women are information, the burden of care-giving, nized as a core component of the
conducting their HIV illiteracy and low self-esteem as central response nor compensated as work.
barriers to the full involvement and mean-
activism in a totally
ingful participation of women, particularly “…Until we get away from the concept
voluntary capacity. of those most affected by HIV and AIDS that ‘women’s work’ is voluntary or
There are thousands (see Box 3). Other obstacles consistently unpaid while men require payment, we
of positive women mentioned, although with less frequency, will not enable a meaningful involve-
included gender-based violence and a lack ment of the people most disproportion-
around the world of access to health care. ately affected who also have the least
who may wish to be The following sub-sections explore resources.”19
activists. Yet, they how these forces play out and interact.
have no financial 4Gender inequality in decision-
4Stigma, discrimination and violence making and access to resources
backing whatsoever, Women face stigma and discrimination as In addition to the limitations placed on
no moral support from they are blamed as vectors of disease in women as a result of socially defined gen-
their partners, and no their homes and communities. der roles, women face further obstacles
when attempting to engage with the AIDS
computer, phone,
“In households that are affected, every- movement as a whole, such as access to
Internet access, credit thing is blamed on the women.”17 resources or ‘seats at the table’.
card or time. Many
local and national Further, available research has shown that “The movement of HIV-positive women
women’s active participation in HIV advo- emerged in a male-controlled context.
organisations of cacy or in positive women’s networks is In the beginning of the pandemic, and
HIV-positive activists linked to a perception of them as living with even until now in some regions of the
are run by volunteers, HIV or to disclosure of their HIV-positive world, AIDS activism is dominated by
status. This, in turn, can lead to stigma men. Sometimes these leaders have
who are largely
and violence from family and community. formed elites, and it is very difficult
women, but are This fear of stigma and discrimination from for women to be part of the decision-
staffed and governed living publicly with HIV was frequently cited making levels. The first battle for
largely by men in the as a central barrier to the full and meaning- gender equality has been inside the
ful involvement of HIV-positive women. AIDS movement.” 20
paid posts, who then
have access to desk 4Burden of care and multiple Investment in building the strategic capac-
space, computers, responsibilities ity of the most affected women has been
phones, vehicles, Women shoulder the responsibility for uneven. Women’s limited participation in
running their homes and caring for their strategic decision-making around funding
Internet, paid time to
families. and programmatic HIV and AIDS priorities
think rather than just has resulted in projects and programmes
do, to travel to, and “At the household level, I think the main that too frequently focused on women as
take part in meetings. problem is that as much as men say they recipients of services rather than as
are breadwinners, women are the back- agents of change.
These men are bone. The housework is done by women Funding is frequently limited to discrete
therefore also involved and they are unable to do their own services – a workshop series or training,
in agenda setting and things. They have too much work.”18 for example – and is not available for
building the institutional capacity and
acquire status in
Women’s responsibilities within their infrastructure necessary for sustained
these roles.” homes also limit their ability to travel for work, networks or innovation.21
— Alice Welbourn, Founder extended lengths of time to attend or
of the Salamander Trust,
Creator of Stepping participate in meetings or trainings. “They give us money but do not
Stones, and former Chair Moreover, the multiple roles women include us. They do not ask us what
of ICW undertake in the context of HIV and AIDS, the issue is. … I’m not sure they will
10 CHAPTER 2support us long term. For women to also limit the extent to which the realities
be empowered, they need long-term and needs of women – as expressed and
support from donors.”22 voiced by women, particularly those most
affected – are taken into account.
Funding priorities are often donor-driven,
and donor agencies do not always pay 4Absence of critical alliances
adequate attention to the extent to which Lastly, even within the community of
allocated resources affect gender inequali- women advocates, researchers and “The main challenge
ties within organizational structures. As a decision-makers, the heterogeneity of
to participation and
result, these structures can perpetuate rather women’s lived experience is frequently
than transform existing gender imbal- overlooked and the critical alliances across leadership in the
ances in leadership and decision-making.23 movements do not consistently exist, response to HIV/AIDS
although the degree of alliances and joint at the social level is
“We are doing work supporting most action varies depending on the sites
that besides taking
at risk women, but programme staff for and regions.27
this are mostly men. It’s similar to other There are frequent divides between care of our daily
organizations, both non-governmental the particular experience of grassroots tasks, we have to go
and governmental. … At high levels, there women or home-based care-givers and over the social
are more male staff than female; at grass- the advocacy of women’s rights actors.
roots levels, there are more women. It The mainstream agenda of women’s
structures set up by
can appear as: Men are thinkers, decision rights activists has tended to marginalize people who hold on
makers, and women are doers.”24 the participation of specific groups of to knowledge and
women, including Indigenous and migrant
who exercise power.
4Lack of transparent entry points and women as well as women in prison. Sex
capacity to participate work leaders commented after the 2006 They build their own
Women, particularly those most affected International AIDS Conference that it was interest groups, and
by HIV and AIDS, have had to struggle the first time they had been included in in order to participate
constantly for a voice in agenda-setting women’s rights sessions. Despite the
we need to raise
and policy-making. Transparent entry violence faced by lesbian women in
points frequently do not exist. South Africa in the context of HIV and awareness and win
AIDS, this issue is not consistently on the their trust. We
“We need the voice of women at the women and HIV agenda. Women who participate but we do
table, especially women living with HIV. use drugs also struggle to add a gender
so in a situation of
But how do we do that? How do we get perspective to harm reduction policies
involved say, at NIH [National Institutes and programmes. The expertise of the inequity, implementing
of Health]? … No one answers me. I plan disability rights’ movement and the com- first the actions that
to go to [Washington] DC in April to pounded vulnerability to and from HIV other people, with
speak to people about this – but how do that disabled women face is not as central
I get involved and who do I speak to?”25 a thread of the response to women and
their own interests,
AIDS as it should be. The manner in which decide for us.”
The pace of communication and decision- young women struggle to have a voice and — ICW Brazil
making at the global level far outstrips be recognized in the women’s sector is
the ability of women with limited Internet another case in point.
access or ability to converse easily in Further, as noted by many informants,
English to keep up. This is another exam- there is also the ongoing challenge for
ple of how women are often excluded due positive women’s organizations to be fully
to their realities. Low levels of literacy and recognized and supported by women’s
formal education also make participation organizations and the women’s movement.
a challenge.26 These structural barriers do The lack of integration between and among
not only have an impact on the represen- overlapping and related movements sug-
tation of critical stakeholders in communi- gests the need for establishing stronger
cation and decision-making processes, but horizontal alliances.
TRANSFORMING THE NATIONAL AIDS RESPONSE
Advancing Women’s Leadership and Participation
11Chapter 3
Women’s Involvement
in the National AIDS
Response: Case Studies
ow has women’s right to participate recently, the failure of South Africa’s
H been realized at the country level?
What is the current status of
women’s participation in the AIDS response,
leadership to respond appropriately to the
epidemic was often a focus of debate and
criticism. However, changes in the coun-
“A network of positive
women would become
particularly with respect to formal and infor- try’s political leadership in 2009 brought a force on their own.
mal decision-making structures? What does with it changes to the national response to They would have
women’s full and meaningful involvement HIV and AIDS as well as a renewed com-
strength on their own.
in the AIDS response mean at the country mitment to the timel y implementation of
level and how does it work? the National Strategic Plan (NSP) for STIs They would be able to
This chapter features five case studies and HIV and AIDS 2007–2011. The new know, as women,
exploring different aspects of the ques- Cabinet also introduced a number of poli- there are areas where
tions raised above and bringing to the cy changes, most notably in the context
review complementary, yet distinct, analy- of HIV testing and treatment, including
they can come in, in
ses. It includes three different country access to programmes for the prevention the national response.
examples – Brazil, India and South Africa of vertical transmission of HIV. We are living in a
– as well as a snapshot of the Global It is also important to recognize that
blind daze and we just
Fund’s Country Coordinating Mechanisms activists have been at the forefront of
(CCMs) and a look at efforts to promote leading changes in policy and treatment sit. What we are
HIV-positive women’s leadership in availability in South Africa. For example, asked to do, we do
monitoring progress and holding policy- they have succeeded in making preven-
because we lack
makers accountable to commitments using tion of mother-to-child transmission
community-based monitoring and evalua- (PMTCT) services available, introducing capacity for these
tion approaches. The case studies have changes in drug and therapy regimens strategic meetings.
been developed to illustrate at a practical and developing and/or adapting national
People are just there
and experiential level what women’s HIV and AID policies to address realities
involvement in the AIDS response looks and challenges. The most notable at the top and they
like at the national level. achievement of civil society has been don’t speak for the
the widely referenced Treatment Action voices of these
Campaign (TAC) court action against
Case Study 1 the Minister of Health for the failure to
women. If the
provide Nevirapine and PMTCT pro- capacity is there, you
South Africa: Political grammes, which subsequently lead to a have a voice. With
leadership and the implications Constitutional Court ruling ordering the
capacity, you can
for women’s participation in the Health Ministry to afford all pregnant
women access to the latter.29 move into advocacy
AIDS response28 Despite these recent achievements, where you know
numerous challenges remain that under-
what to say, what
The context of HIV and AIDS mine the adequacy of the national
in South Africa response as well as the extent to which to ask for.”
Political leadership is widely recognized women’s leadership and participation is — Esse Nsed, Positive
Development Foundation,
as a key element of an effective national meaningful. Examples of these challenges Nigeria
response to HIV and AIDS. Until very include the slow responses in rolling out
TRANSFORMING THE NATIONAL AIDS RESPONSE
Advancing Women’s Leadership and Participation
13HIV treatment and changing drug regi- process and to ensure responsiveness to
mens according to new research findings; women’s realities, needs, risks and vulner-
the inadequate implementation of new abilities. One of the main areas in which
treatment guidelines affording women this process unfolds is, undoubtedly, the
greater access; the persistent failure to South African National AIDS Council
adequately focus on successful and (SANAC), as the various structures within
women-centred HIV prevention efforts; SANAC have strong civil society represen-
and the continued inflammatory state- tation, providing the opportunity for dis-
ments by political leaders about women, course and engagement between civil
sex and HIV prevention. society and the Government on a wide
The need for critical engagement range of issues, including policy reform
between civil society and the Government processes. Civil society also plays a vital
on all issues affecting the national AIDS role in enhancing communities’ capacity
response remains pressing. This is to to actively engage various stakeholders
ensure that the effectiveness of available on the issues affecting their lives, includ-
programmes and services is an ongoing ing the adequate and rights-protecting
delivery of HIV testing, prevention, treat-
ment, care and support services.
Promising Approaches
Women’s participation and leader-
Knowledge is power ship in the formal AIDS response
During the consultative processes leading
The Well Project to the development and approval of the
Developed by and administered with
women living with HIV, The Well Project NSP at the end of 2006, various women’s
in the United States provides a model and human rights groups and activists
for how research, policy and practice voiced strong concerns that the draft
can be translated into terms that can document did not adequately reflect or
be used by women living with HIV and respond to the situation of women. To
their caregivers and health providers.
address this gap, a number of women’s
The Well Project is changing the course
of HIV and AIDS through its provision advocates and rights activists from differ-
of up-to-date research and educational ent sectors came together in March 2007
resources on women and HIV. for the 1st SANAC Women’s Sector
Summit, developing a revised draft
The Women’s Collective of the that was inclusive of and responsive to
United States women’s realities, needs and risks. The
The Women’s Collective, a non-profit
organization in Washington, DC, pro- final version of the NSP, which was adopt-
vides a model of how organizations ed by Cabinet in May 2007, included many
led by and with women living with of the recommendations made during
HIV can successfully reach those this Summit.
women and their families by provid- Although some questioned its repre-
ing holistic services that are peer-
sentativeness, the Summit was an impor-
based, woman-focused, family-
centred and culturally appropriate. tant event for women’s participation and
“Our policy and advocacy team is in leadership in the formal AIDS response.
the privileged position of being in an It brought about an ad-hoc and direct
office that has direct contact with advocacy response by numerous women
women living with HIV/AIDS and their
and women’s rights organizations who
families. We see the everyday effects
of these policies. For us, policies are actively participated in the drafting of the
more than documents and ideas but national AIDS policy, and took leadership
living and breathing realities. When a so as to ensure that women’s voices and
program is cut or is successful, we all concerns were heard and included in the
experience the impact firsthand.” policy framework. Since then, the SANAC
Women’s Sector has led and supported
14 CHAPTER 3a number of initiatives, emphasizing representation in the various SANAC
specifically the extent to which policies, structures, but also their meaningful par-
programmes and initiatives address the ticipation and leadership, as compared to
realities and needs of women, as well as ‘tokenism’ and ‘gender representation’
questioning the adequacy of the national without the necessary enabling environ-
AIDS response in this regard. An HIV ment to adequately hear their voices and
prevention summit, a consultation on the address their concerns. And while this
roll-out of medical male circumcision and challenge may not be unique to the
its impact on women, as well as a consul- South African context, it greatly affects
tative workshop on sex workers’ rights the extent to which specific needs, reali-
and FIFA30 are a few of the activities led ties and risks of women living with HIV
and supported since 2008. are taken into account and addressed by
Strong women leaders are found at all the national response.
levels of SANAC structures, ranging from One SANAC representative living with
the high plenary and programme imple- HIV commented on her role in formal
mentation committee to the 17 civil socie- response mechanisms that she had just
ty sectors that are represented. This is thought she had to be on the committee
arguably a clear indication that mecha- as an HIV-positive person, but had “never
nisms facilitating women’s involvement, thought of raising her own issues or hav-
participation and leadership are in place. ing the confidence to do so”. Statements
However, questions have to be raised as like this clearly underscore challenges
to their meaningful participation as well in relation to both positive women’s
as the ‘real’ impact of their representation representation as such and the necessary
in these structures as this does not neces- capacity and consciousness to represent
sarily translate into strong representation voices, and advocate for the specific reali-
of women’s needs and realities. ties and needs of positive women.
Many HIV and AIDS interventions and
Remaining challenges programmes still fail to respond to
While recognizing the many strides that women’s needs and realities and therefore
have been made towards women’s partici- fail to significantly reduce women’s risk
pation and leadership in the formal AIDS and vulnerabilities. While South Africa’s
response, it is important to acknowledge legislative and policy framework is funda-
that there are still a number of challenges mentally based on equal rights for all, and
remaining. ‘Gender representation’ in prohibits any form of gender inequality,
decision-making structures is of great women’s realities are not coinciding with
importance, but women elected into these these provisions and guarantees. There
structures must also be in a position and remains a consistent failure and reluc-
have the capacity to negotiate and facili- tance to challenge and transform the
tate decision-making processes that are patriarchal paradigm in which the national
based on and responsive to women’s response to HIV and AIDS is designed,
rights, realities, needs and concerns. In implemented and monitored. Thus, gen-
addition, key to achieving women’s effec- dered realities, including unequal power
tive and meaningful participation and relations and gendered concepts of sex
leadership in all aspects of the AIDS and sexuality – all factors impacting on
response is ensuring that the ‘right women’s risks and vulnerabilities – are
women sit at the table’31 of decision- neither questioned nor challenged. Given
making processes of the AIDS response. the limited impact of any AIDS response
It is also of critical importance to that fails to transform the societal context
ensure the participation and leadership defining women’s vulnerabilities and risks,
of HIV-positive women. There seems to the efficacy of women’s participation and
be a lack of mechanisms and political will leadership in the response to HIV and
to facilitate and ensure not only their AIDS should be measured by the extent
TRANSFORMING THE NATIONAL AIDS RESPONSE
Advancing Women’s Leadership and Participation
15You can also read
