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HIV/AIDS: Hidden costs of care giving

NewsNotes, March-April 2009

The HIV and AIDS pandemic has resulted in myriad responses, from prevention programs to extensive research for vaccines and treatment, from income generation to care of orphans and more. Private, corporate and government efforts have resulted in the outlay of billions of dollars, yet despite positive advances in terms of treatment and access, for every two people on treatment, five become infected. The challenge of prevention on a massive scale (a public health priority) parallels the frustration of watching the breakdown of families, communities and society. In addition to specific AIDS related programs, new efforts are underway to understand and improve health care systems and the serious needs for professional health care workers in those countries most impacted by the pandemic. In that context, the role of caregivers, most often women and invisible, requires analysis and policy responses. 

This year, the priority theme of the 53rd Session of the Commission on the Status of Women (CSW), “The equal sharing of responsibilities between women and men, including care giving in the context of HIV/AIDS,” highlights areas of policy for the international community as well as for U.S. legislative efforts. While it may seem difficult to imagine legislating “equal sharing of responsibilities” (gender parity), an analysis of care giving in the context of HIV/AIDS will highlight the hidden dimensions of non-paid care giving and its policy implications.

Care giving, of children or of the ill, traditionally has been seen as a woman’s role; in developing countries, where paid care giving is almost nonexistent, this extends to the girl-child and grandmothers. (This is not to discount men who do take on family care; it is the exception, rather than the rule). However, traditions no longer guarantee that women and girl children themselves will be taken care of financially or socially, and care giving can become one more obstacle to a woman’s ability to earn an income, participate in the broader community or, in the case of the girl, attend school. On an economic level, the monetary value of non-paid care is not seen, acknowledged, calculated or factored into the costs of local, national or global AIDS programs.

In many countries, cultural practices and expectations that a woman’s sphere is the household further limits her access to primary and secondary education, meaningful and paying employment, as well as participation in public forums and political life. Lack of voice as well as limited economic and legal power further limits women’s participation in spheres of formal power (national governments or international levels). If women have no political voice at the local or national level, there will be little interest at a legislative level in responding to the economic, educational, labor or health needs of the girl child or women in national policy.

Since 1994, numerous conventions, declarations and agreements have been signed by the member countries of the United Nations, including the 1995 Beijing Declaration, the Convention on the Elimination of All Forms of Discrimination Against Women, the Convention on the Rights of the Child, the International Labor Organization Convention #156, and the 2001 Declaration of Commitment on HIV and AIDS, documents which highlight equal participation and responsibility of women and in the social, parenting, labor, political and economic spheres. This year’s CSW priority theme will attempt to bring member states to an analysis of the gender aspects of responsibility sharing at all levels, and will provide an opportunity to highlight the role of caregivers in an economic and social context as well as propose policy programmatic responses.

What does this mean for U.S. policy? Will a national AIDS strategy include a gender perspective at programmatic levels? Is all domestic labor policy and legislation around care giving (paid and unpaid) gender sensitive? Do all foreign assistance programs and grants reflect gender equity, from the administrative to the on-the-ground programs?

In our concern over the lack of health care workers in countries highly impacted by HIV and AIDS, are we analyzing the role and needs of unpaid caregivers, particularly women and girls, and programming training and community and financial support where possible? What are efforts for including the training and support of men in care giving roles in our foreign aid programs?

Are all monitoring and evaluation instruments for HIV/AIDS programs and grants, domestic and foreign, gender sensitive and do they include measures of impact at all levels?

The U.S. participation in the UN affords us the opportunity and responsibility to evaluate our own programs and policies, in the light of the excellent materials prepared for this coming UN session.

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