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Via Huairou Commission at

International AIDS Conference 2010

To Sign on to Call to Action - Contact:

   all_caregivers@yahoo.com

 

A 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.  

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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

  • Are major actors in the fight against HIV and AIDS;
  • Create holistic and effective community health systems and ensuring access to treatment and prevention;
  • Must be recognized and resourced for their efforts if we want to end the crises of HIV and AIDS and create more resilient communities. 

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:

  • treatment and prevention could not be rolled out if they were not in communities linking people living with HIV to health clinics, sharing information on available services, and ensuring food and nutrition security;
  • funding would not reach those who need it most if they were not in communities watching where funding went, and ensuring it reaches the most poor and vulnerable households; 
  • many people, including sex workers and drug users, and especially at the grassroots level, would not know or be able to claim their rights if organized groups of caregivers were not joining them to raise awareness on and in some cases actively protecting those rights. 

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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