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Via Huairou Commission at
International AIDS Conference 2010
To Sign on to Call to Action -
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Call to Action: Recognize and Resource Quality Palliative Home-Based Care and
Support, and Caregivers as Central Pillars of a Comprehensive Response to HIV
and AIDS
We, the undersigned, call for an immediate and urgent increase in focus and
investment in quality palliative care and support for all people living with
and affected by HIV and AIDS around the world, particularly through action to
support family and community based caregivers.
Even though care and support is one of the three pillars of universal access
and is central to achieving prevention and treatment commitments, it remains
neglected in the AIDS response and does not receive the attention or funding it
merits. Family and community caregivers are anchoring a major response to HIV
and AIDS by providing the majority of HIV care and support, yet neither
caregivers nor their concerns have been adequately recognized or represented in
HIV policy, programming or funding dialogues and commitments.
The
AIDS pandemic has changed the fabric of communities around the world and
created a particular burden in the lives of many people. For decades
overburdened and under-resourced public health systems have displaced care and
support into the household and community. This has meant that family and community
caregivers, the majority of whom are women and girls, have been left with
little choice but to devote their time, energy, skills and the little resources
they have to provide community health services. These carers receive very
little if any recognition, psychological and financial support, equipment or
training. Older women and young girls are often particularly severely affected,
with older women looking after their adult children and grandchildren without
access to income generation or emotional support, and many girl carers missing
out on school and other opportunities.
Now, thanks to the wide roll-out of ARVs, people are living longer with HIV.
However, it is often forgotten that this means that increasing numbers of
positive people are in need of a wider range of care and support services over
longer periods of time. Caregivers' workload is increasing yet they continue to
be ignored, undervalued, under-resourced and under supported. This must
change. To ensure a comprehensive and effective response to HIV and AIDS
that incorporates care and support and the contributions of caregivers, we
recommend the following actions:
· Ensure that quality
palliative home-based care and support and carers are recognized for their
critical role in the continuum of care, particularly primary health care and
the provision of social protection to the poorest and most vulnerable. As such,
national plans and funding for community and public health systems and social
protection mechanisms must include and directly support quality palliative
home-based care and caregivers.
· Design, implement and fully
fund comprehensive national policies on HIV care and support that increase
access to quality palliative home-based care and support and effectively coordinates
the government and civil society HIV responses. Ensure that a minimum
percentage of direct funding support is earmarked for community-led responses
to AIDS, particularly those driven by women.
·
Include caregivers as decision-makers in the design, implementation, monitoring
and evaluation of resources and programs. National governments and global
donors must be held accountable to the needs and priorities of communities by
key stakeholders living with and affected by HIV, including home-based
caregivers
· Recognize, affirm and support
community caregivers by providing adequate equipment, psychosocial support,
compensation and supervisory support from health professionals. Provide
caregivers with sufficient and regular training on quality palliative
home-based care and support. The training should enable them to recognize and
support the health needs of the people they are caring for and administer
medication or refer as necessary so that people living with HIV have access to
the medications that they need, including opioids.
· Recognize the unique
requirements of caring and protecting children affected by HIV and AIDS,
especially child-headed households, related to: exploitation, trafficking,
child labor, violence, sexual abuse, child marriage birth registration, stigma
and challenges posed by institutional care
· Reduce household poverty and
the cost of care through provision of basic services and the cost of care
through government provision of basic services and social protection measures
(including universal pension coverage, cash transfers, access to water,
sanitation, food security, women's land and inheritance rights, etc) and
through building the capacity of community-based organizations to be involved
in provision of these services and to develop livelihoods initiatives for care
providers. Reduce the burden of care specifically on women and girls through
strategies and programs to engage and support men as caregivers while also
promoting women in leadership and decision-making roles in care
provision.
________________________________________________________________
GRASSROOTS WOMEN HOME-BASED
CAREGIVERS HAVE A CENTRAL ROLE
IN COMPREHENSIVE
RESPONSES TO HIV/AIDS AT THE COMMUNITY LEVEL
Grassroots
women home-based caregivers and their partners and allies demonstrated their
central role in creating comprehensive responses to HIV and AIDS at the
community level, and called for immediate action and investments in their
organizations and initiatives at the International AIDS Conference this week.
The caregivers and the issue of care and support have gained unprecedented
attention at this year's AIDS Conference. The caregivers are members of the
Huairou Commission and the larger space of the newly formed Caregivers Action
Network (CAN - founded by Cordaid, HelpAge International, the Huairou
Commission and VSO International). Through participation in a large and active
Networking Zone in the Global Village, panel sessions, a daily caucus, and the
Women's and Human Rights Networking Zones, the caregivers have clearly stated
their agenda .
Home-Based Caregivers
As
major dialogues in the Conference focus on "Treatment 2.0" (which
refers to radically simplified treatment regimens and treatment as prevention),
new advancements in microbicides, the human rights of those considered most at
risk, and global funding commitments for AIDS, the home-based caregivers
insist, based on their daily experience, that:
Women's
organizations from around the world have organized for this AIDS Conference
with new coordination through Women ARISE. They are advancing a strong agenda
and have ensured that issues of sexual and reproductive rights, the rights and
issues of sex workers and women drug users, and other women's issues, are
visible throughout the Conference program. Home-based caregivers and the
Caregivers Action Network are clear that they and their issues of poverty,
access to food and basic services, are not be fully included in the women's
agenda. However they believe that home-based care and support are some of
the most urgent and pressing women's issues, especially in poor communities
where women are shouldering the major work of providing care for people
infected and affected by HIV and AIDS. As the home-based caregivers try to work
with policymakers and others to build more effective health and social
protection systems to alleviate their burdens, they ask for immediate
recognition and support in the work they are already doing, and have been doing
for many years, and seek allies in the women's movement to join with them in
advancing this urgent agenda.
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