HIV: focus on children

Written by Linda Richter

“Nowhere to be seen” is how one could describe the attention given to children only a few years ago - two decades into the HIV/Aids epidemic. Tear-stained faces and sick parents illustrated how fundraising efforts seldom benefited children affected by the disease. Many important HIV/Aids gatherings used children "decoratively", having them dance and wave flags at opening and closing ceremonies, but did little to address the enormous HIV/Aids-related challenges to children's health and wellbeing.

All this has since changed. Concerted efforts by collaborating groups have pushed forward the “child agenda”. The first plenary address in more than 20 years of the International Aids Conference was delivered in Mexico City in 2008, calling attention to the neglect of children and the importance of supporting families. Today, prevention of infection among newborns is a key goal of the US President's Emergency Plan for Aids Relief and 10% of its funds are earmarked for children affected by Aids.

In May this year, the Global Fund to Fight Aids, Tuberculosis and Malaria launched the Born HIV-Free Campaign. Supported by France's first lady and Global Fund ambassador, Carla Bruni-Sarkozy, it is one of the most ambitious campaigns ever, intended to mobilise the global community to provide access to treatment for every mother who needs it. The aim is that, by 2015, no child will be born with HIV.

Families are at the forefront in the programme of the 18th International Aids Conference next month in Vienna. Among other events, a special issue of the Journal of the International Aids Society will be launched, devoted to family-centred approaches to children affected by Aids.

With laboratory fertilisation, surrogate pregnancies, gay parents, declining marriage and high divorce rates, the question arises: What is a family? In many parts of the world, "the family" is much the same as it has always been. Extensive and multi-generational, in many families relatives support one another in the absence of formal services. However, new forms of family are emerging that give the same support that families have always been expected to provide.

The 1988 Task Force on Aids and the Family suggested that "Families should be broadly defined to include . those committed relationships between individuals that fulfil the function of family", contributing to expanding definitions of family to reflect current reality.

Why focus on families in the struggle to support children and improve their lives? Firstly, infection in the worst epidemics is transmitted through family relationships. In much of sub-Saharan Africa, the majority of infections occur between long-standing heterosexual partners and, as a result, their children.

Secondly, families carry the brunt of HIV infection. The resulting fear, discrimination, social exclusion, costs of treatment, suffering and death affect families, not only individuals. HIV infection due to needle sharing, sex work, and unprotected sex between men makes its way into families and frequently affects children. Most female prostitutes have children, and the vast majority of men who have sex with men in China and India are fathers.

The third reason for focusing on families is that some of the most exciting recent evidence points to families as a new and effective site for HIV prevention and treatment for both adults and children.

One of the best bets for prevention is to protect children. Technically, the problem is all but solved. Effective drugs can prevent infection and keep Aids illness at bay. Together with abstinence and condoms, close to 100% of HIV transmission from mother to child can be prevented. But even in countries in which drug regimes are available, fewer than half of mothers and babies receive the needed medications. Failures of implementation occur at each step of the way.

All indications are that family-centred approaches improve these rates. More women are reached and mothers adhere better when they are offered drugs to treat their own HIV illness; when their partners are tested; when HIV counselling and testing is brought to their homes; when their other children are tested and treated; and when services address other pressing needs of the family, such as nutrition and family planning.

Similarly, family-centred approaches have been shown to be more effective in the delivery of antiretroviral treatment to children.

Family-centred approaches can support HIV-affected parents and help them to care for and protect their children, and will avoid frightening them into hiding from the authorities to avoid their children being taken away.

Despite this evidence, family-centred approaches are not being delivered sufficiently anywhere. Medical approaches to HIV prevention and Aids treatment remain individually-based. As a result, they are less effective in practice than they could be because many families cannot afford to access what treatment is available.

It is plain unjust for the most vulnerable groups to have to bear the burden placed on them by inflexible health services. Many agencies are working hard to change this. Realising that the world's healthcare needs will never be met by health facilities and professionals alone, the World Health Organisation and others are working to shift a number of tasks onto trained community workers who can bring healthcare to people's homes.

But funders need to get behind this movement and encourage advocacy, delivery systems, and research to give form to family-centred approaches to protect and care for children affected by Aids.

The 19th International Aids Conference takes place in Washington in 2012. That will be the time to take the measure of our determination, resolve, and progress over the previous two years.

In Vienna, family-centred approaches will take to the stage - and one hopes that at the Washington conference they will be awarded the prize.

Prof Richter is the executive editor of the Child, Youth, Family and Social Development Programme of the Human Sciences Research Council

(This story was provided and used with permission by Timeslive.)