WUNRN
Huairou Commission
The
Huairou Commission AIDS Campaign bridges the gap between what is happening in
communities and what happens at the policy level, by ensuring that grassroots
women who are leading the fight against AIDS in their communities are
represented in decision-making spaces. Women's home-based caregiving groups
provide a holistic response to HIV/AIDS, addressing issues such as access to
basic services, land rights, housing conditions and food security. The Campaign
promotes an AIDS response that fully and meaningfully recognizes, integrates
and builds upon the development contributions of these home-based caregivers
|
Bridging the Gap Between Policy and Reality Report from
"HIV Care and Support: A Roadmap to Universal Access", November
9-10, 2010 |
|
By Shannon Hayes -
Huairou Commission "It strikes me, the extraordinary
strength of community and the remarkable sense of the grassroots that
characterizes the African continent. I've always understood the astonishing
sophistication and intelligence and generosity of spirit that lies at the
grassroots in communities in Africa. The tremendous strength and resilience
that is everywhere in evidence... the continuum of care as it was described
has it greatest application at the community level. If this pandemic is to
one day be defeated, if it is to be subdued, confronted or overcome, it will
be overcome because of the remarkable community capacities." -Stephen Lewis, Key note
address In 2001 and again in 2006,
United Nations member states met together in a General Assembly Special
Session on HIV and AIDS (UNGASS), where they agreed to a set of commitments.
The pillars of these UNGASS commitments were achieving universal access to
HIV treatment, prevention, care and support. Since 2006, there has been by
some accounts a 13-fold increase in access to HIV treatment, thanks to high
profile global civil society activism and massive commitments by global
donors and governments. Increased access to anti-retroviral therapy (ART) has
extended lives around the world, changing HIV from a death sentence to a
chronic, manageable illness for many people. As these advancements have
been made, the roles and realities in poor communities where the burden of
HIV has been particularly severe have largely remained invisible. And the
roll out of ARV has not in any way meant a reduction of work for home-based
caregivers, who continue to counsel people to get tested, accompany them to
clinics and hospitals, monitor treatment adherence, ensure people on
treatment have enough food, and organize a variety of social support services
in their communities. As a consequence of the continued invisibility of
caregivers' work (perhaps because it is considered "just women's
work"), access to care and support have been nearly ignored, and the
role and important contributions of home-based caregivers and organizations
that provide the all important care and support - the "glue" that
holds the AIDS response together at the community level - has not received
the attention or funding that it merits. On November 9-10, 2010, the
UK Consortium on AIDS and International Development took a major step to
reverse this global inattention on care and support by convening an
international conference, titled "HIV Care and Support: A roadmap to
universal access by 2015". The Conference brought together policy makers
and funders from the major institutions in the global AIDS response including
UNAIDS, WHO, DfID, USAID, the Global Fund, UNICEF and World Bank, national
government representatives, international, national and local NGOs, global
activists, representatives of the women's movement, and grassroots home-based
caregivers. The Huairou Commission was represented at the meeting by 3
grassroots caregivers, 2 national-level NGO partner staff, and the global
AIDS campaign coordinator. 3 other grassroots caregivers had planned to
attend but were denied their visas at the last moment. We joined with a
larger team of community practitioners and allies through the Caregivers
Action Network to ensure that voices from the ground took a central role in
the Conference. Some of the objectives of the
Conference were to increase understanding of the current situation of care
and support in policy and practice in Africa, and why it is important in
achieving universal access to HIV treatment and prevention to work towards a
consensus on a common definition of care and support. The outcome of the
conference was a roadmap with key recommendations for all stakeholders in the
areas of policy, research, funding and programmatic responses to achieve
universal access to care and support by 2015, with a particular focus on
Africa. At the conference,
policymakers and donors described their previous and new commitments to care
and support and getting care and support higher on the global agenda, and
on-the-ground practitioners shared the reality of care and support in their
communities - who was providing it (mostly poor women), if and how it was
being funded (inadequately), and caregivers' role in policy and
decision-making (nearly non-existent). Caregivers also shared the work they
are doing to improve this situation, claiming to be recognized as leaders,
experts and collaborators at the same level as the professional policy makers
represented at the Conference. Panels at the Conference focused on
definitions, collaborations, setting the scene of care and support in the
community, policy, funding, research and programmatic approaches. Throughout the conference,
the dialogue balanced between global, top-down policies and programs with an
emphasis on indicators, results, impact and cost effectiveness, and the
realities of caregivers working on the ground, who those policies and
programs have largely failed to include or benefit. Considering the billions
of dollars still being invested in HIV and AIDS, and the continued high
prevalence rates in so many areas, the conference seemed to agree that it was
vital to bridge these gaps and find real solutions to ensure universal access
to care and support in a way that both recognizes the work caregivers have
been doing, but without further burdening them as they take on roles that
most people agree belong to the state. Despite this commitment, it was not
entirely evident how this would be done, and if the partners of influence in
the room were really committed to finding a new way of working and partnering
with grassroots caregivers and communities, to tangibly recognize them as
experts and leaders, seek their central involvement in policy making, and
mandate them to be monitors and evaluators of AIDS funding and programming,
for the benefit of everyone living with and affected by HIV. The Huairou Commission was
well-represented during the Conference. Violet Shivutse, who also served on
the Technical Advisory group for the Conference, gave one of the key note
speeches. Shorai Chitongo presented on the Policy panel, and Frances Odong
shared the process and results from the Compensations for Contributions
action research initiative. In addition, caregivers in their diversity were
represented, with a grandmother from Zambia, Kufekisa Laugery, a man providing
care and support for men who have sex with men, David Kato from Sexual
Minorities of Uganda, and a caregiver for injecting drug users and sex
workers in Mauritius, Daniel Phillppe of PILS, all presented on panel
alongside high level policy makers and donors. The caregivers' central
participation in the conference was appreciated by many participants, and the
Huairou Commission team felt proud that caregivers were positioned and
recognized as equal experts at the Conference. The Huairou Commission team emerged
feeling good about the strong recognition of care and support, the consensus
that seemed to exist about the importance of supporting care and support and
including caregivers in that work. At the end of the conference, nearly all
of the participants expressed how much they valued the voices of the
caregivers who attended, and the way they were able to ground the discussions
in their lived realities. But we also felt that there is still a lot of work
to do to ensure that the women and men who are leading care and support
efforts on the ground are fully and meaningfully included in policy making
and funding, and committed to taking action. Some of the follow up plans are
to continue to strengthen a movement of caregivers who can represent
themselves in policy making and advocate globally, through the Home-Based
Care Alliance; to develop a common definition from the grassroots level of
who caregivers are and what they do; and to evaluate various means of
financially supporting caregivers to develop a common message on what
caregivers want and need. We will undertake all of these with a continual
focus on demonstrating impact and cost effectiveness. With the Caregivers Action
Network, we will also continue to advance the implementation of the roadmap
when it is finalized, and to advocate specifically with key institutions to
dialogue with caregivers and forge real solutions to redress the burden of
care. We are already looking towards UNGASS and ICASA in 2011 and the
International AIDS Conference in 2012 as key venues to make impact and
continue to raise the profile of care and support. Preparatory to the
conference, the Huairou Commission helped organize two activities to ensure
that grassroots caregivers were involved in the Conference even if they could
not physically attend. First, we organized an
8-country grassroots consultation. with grassroots organizations and
home-based caregivers in Cameroon, Ethiopia, Uganda, Kenya, Malawi, Zimbabwe,
Zambia and South Africa to guarantee that home-based caregivers' voices,
perspectives and priorities are at the forefront of creating effective and
participatory policies. The conference was a test of the ability of
communities, multi-laterals, bilateral donors, national governments and NGOs
to ally and react in order to address local issues, in particular, appraising
and embracing the contributions made by grassroots women and girls. Download the full report from that consultation
here. Secondly, as part of the Caregivers
Action Network organized a pre-meeting to bring together the caregivers and
local NGOs working directly with caregivers, to build linkages between
caregivers and their allies who would be at the conference; to determine a
common agenda for advocacy at the conference; To agree on a strategy and
roles in moving that agenda forward. Meeting participants came up with a
comprehensive set of recommendations, which you can download here. |