Remember ME - You Me and Dementia

Thursday, February 12, 2009

Families pay the price of caring for children with HIV

The world's response to HIV/AIDS has failed millions of poor children and their families in the worst-hit countries, says a report from an international network of researchers and practitioners.

The Joint Learning Initiative on Children and HIV/AIDS (JLICA) says flawed policies and programmes by governments and their partners have led to misconceptions about what works.

The United Nations estimates that, in 2007, 2.1 million children under the age of 15 were living with HIV and 15 million children had lost one or both parents to the virus. While access to antiretroviral drugs is improving dramatically, children in sub-Saharan Africa are about one third as likely to receive them as adults, according to the Joint U.N. Programme on HIV/AIDS (UNAIDS).

"JLICA found that there is a lack of good data on children and HIV/AIDS and the information that is available is often not used," said the network's co-chair, Agnes Binagwaho, who is permanent secretary at Rwanda's ministry of health. "As a result, many well-intentioned efforts do not take account of key realities that must help shape an effective response to the impact of HIV children and their families."

The upshot is that families and communities in the worst-hit regions, such as sub-Saharan Africa, are left to bear around 90 percent of the financial cost of caring for children with almost no help from outside agencies, the report says. At the same time, their capacity to cope is being reduced by poverty and food insecurity, it warns.

"The global economic crisis aggravates the hardships experienced by those affected by HIV/AIDS and extreme poverty, and makes action to expand and sharpen our responses all the more imperative," said Alex de Waal of the New York-based Social Science Research Council, who leads JLICA's policy group.

The report - the fruit of two years of research and analysis - says financial resources for services to support children and families affected by HIV/AIDS "remain far below what is required" on a national scale. And the way programmes are designed and put into practice often prevents money reaching local communities.

On Tuesday, UNAIDS called for fresh funding to fill a gap of $11.3 billion from a total of $25 billion needed to meet goals for universal access to HIV prevention, treatment, care and support by 2010.


According to the JLICA report, one common failing of approaches targeting children is that they tend to focus almost exclusively on AIDS "orphans", defined as having lost one or both parents to the disease. In fact, JLICA found that 88 percent of "orphans" do have a surviving parent, even though they and extended family members often lack resources to care for the children.

The report warns against targeting support services too narrowly because in poor communities hard-hit by HIV all children - not just "orphans" - face deprivation. By singling out those directly affected by HIV, there may be stigmatisation and abuse of the children, and wider needs go unmet.

The report recommends that policies and programmes should be sensitive to AIDS but not focus entirely on the disease, and they should be driven by children's needs instead of their orphan or HIV status. A distinction should be made between children who have lost a parent to AIDS and those who have no home or family to take care of them.

The report also urges organisations working on HIV/AIDS to provide support to children to and through their families so that they build on their existing resources rather then creating new structures to replace them.

"Families are at the heart of the AIDS response," said Michel Sidibé, executive director of UNAIDS. "Policies, programmes and funding must focus on providing universal access to HIV prevention, treatment, care and support for the family as a unit to ensure that both children and the adults who care for them get the essential services they need."


Governments can do their bit by providing income transfers to poor families affected by HIV, allowing them to spend the money on what they need most - whether it be food or transport to health facilities.

The report cites the example of a successful cash transfer programme in Zambia, which provided $15 per month to the poorest 10 percent of households. Rolling out a similar initiative across low-income countries in sub-Saharan Africa would cost just 3 percent of the aid promised to Africa by world leaders at the 2005 Gleneagles summit, it notes.

JLICA also criticises the ABC (Abstain, Be faithful or use a Condom) approach to HIV prevention, saying it does not address powerlessness among women and teenage girls in situations where they risk infection.

It proposes other measures including better physical safety for girls at school, on public transport and in places of recreation; tackling behaviour and attitudes that promote sexual abuse; and improving young women's economic independence.

The report says one way to learn from the mistakes of the past is to give poor people living with HIV/AIDS a bigger say in how resources are spent.

"Increased involvement of local communities in the development, implementation and assessment of programmes will help to ensure that they are both relevant to local needs and achieve better results," said Geoff Foster, founder of Zimbabwe's Family AIDS Caring Trust and leader of JLICA's group on community action.


Forget yourself for others, and others will never forget you.

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