Children Living in a World with AIDS

AIDS has changed the world for children. Today’s children - defined by the United Nations Convention on the Rights of the Child as people under the age of 18 - face a lifetime of risk from HIV, the virus that causes AIDS. Children are exposed to the risk of HIV infection at all different life stages as they grow into adulthood. Already today, more children are contracting HIV than ever before. While the number of those infected by HIV continues to grow, the epidemic also has a direct and devastating effect on millions of other children whose lives have been permanently altered by the intrusion of HIV/AIDS into their households or communities. UNAIDS estimates that by mid-1996, nine million children under 15 years old had lost their mothers to AIDS.

This article focuses on children in developing countries who are infected by HIV and on the orphans of AIDS who are directly affected by the epidemic in their families and communities. These are two central concerns of the World AIDS Campaign 1997, which however also covers issues as they relate to children who live at risk of HIV infection because their fundamental rights, including to medical care and to HIV information and education are ignored, or because their personal circumstances such as sexual abuse and commercial sexual exploitation make them especially vulnerable.

Children infected with HIV

More children are contracting HIV than ever before, and there is no sign that the infection rate is slowing. UNAIDS estimates that at the end of 1997, 1 million children under 15 will be living with the virus, well over 90% in developing countries.

In sub-Saharan Africa, the region most severely affected by AIDS so far, the US Bureau of the Census has predicted that AIDS will offset improvements in infant and child mortality achieved in the past decade. By the year 2010, AIDS may increase infant mortality by as much as 75% and under-five child mortality by more than 100% in those regions most affected by the disease.

About 90% of children under the age of 15 years who become infected with HIV acquire the virus from their HIV-positive mothers, during pregnancy or delivery, or through breastfeeding. While not all children born to HIV-positive mothers become infected with the virus, the risk of infection is much greater in poor countries. Most studies suggest that the probability of HIV transmission from mother to child, is between 25% and 45% in a developing country and between 15% and 25% in countries in Europe or in North America.

These differences may be explained by the difference in the frequency of breast-feeding and by maternal characteristics such as the nutritional status and by factors during delivery. Breastfeeding is far more common in developing countries than it is in Europe or North America. It is promoted in poor countries because it affords vital protection against deadly childhood diseases, particularly diarrhoea and respiratory infections, that are usually more common than HIV/AIDS. Breastfeeding is also ‘free of cost’, whereas the costs of infant formula including clean water for preparation are often beyond the means of poor families. HIV-infected mothers in developing countries are faced with a dilemma in choosing between breastfeeding and other ways of feeding. Therefore, in order to take an informed decision regarding their child’s health, it is important that HIV-infected mothers have access to information and support services.

Childhood AIDS in developing countries - a more aggressive disease

AIDS kills children much faster in developing countries than in industrialized countries. In Europe, 80% of HIV infected children survive at least until their third birthday, and more than 20% reach the age of ten. In Zambia, however, one study suggests that nearly half of HIV-infected children were dead by the age of two. In another study from Uganda, 66% of HIV-infected children were dead by the age of three.

The more rapid course of paediatric AIDS in poor countries is mainly explained by poor nutrition, poor health services and widespread infectious diseases to which children are particularly vulnerable. These hazardous conditions make childhood AIDS in poor countries and rich countries rather different diseases.

In industrialized countries, childhood AIDS strongly resembles adult AIDS. In sub-Saharan Africa however, illnesses in HIV-positive children resemble ordinary childhood illnesses, only they are more frequent and severe in children with HIV-infection whose immune defenses are low. HIV-positive children commonly experience wasting and delayed development and are often killed by typical childhood diseases like diarrhoea, measles, tuberculosis and other respiratory infections.

Poverty is the main reason why children die more quickly of AIDS in developing countries, where crowding promotes the spread of tuberculosis and other respiratory diseases, where malnutrition weakens the immune system and where lack of clean water encourages the spread of waterborne diseases such as diarrhoea.

The Orphans of AIDS: Breaking the Vicious Circle

In Uganda, there are 1.2 million children under the age of 18 who have lost at least one parent to AIDS, a figure that is increasing by an estimated 50,000 each year according to the US Bureau of the Census and the World Bank. Although sub-Saharan Africa is currently the worst affected region, the numbers of AIDS orphans is rising fast in other regions. In Thailand, more than 100,000 children under the age of 15 will have lost their mothers to AIDS by the end of the decade.

Children who lose a parent to AIDS suffer grief and confusion like any other orphan. However, their loss is often worsened by prejudice and social exclusion, and can lead to the loss of education, health care, and the loss of property they may be entitled to inherit should the second parent die as well. The resulting poverty and isolation can create a vicious circle, placing them at greater risk of contracting HIV themselves.

Most, but not all, organizations define orphans as children who have lost one or both parents to AIDS. Because HIV, the virus which causes AIDS, is sexually transmitted, one parent who becomes infected is very likely to pass the virus on to his or her partner. Children who lose one parent to AIDS are thus at great risk of losing their second parent as well.

Extended families soaking up the pressure - but for how long?

In many developing countries extended family systems have traditionally provided support for orphans. AIDS, combined with other pressures such as migration, is pushing the extended family system to breaking point in the worst affected communities.

For example, many children orphaned by AIDS are looked after by their grandparents who may be in need of health care themselves. The death of a grandparent may leave the situation where there is nobody else in the extended family willing to care for the children, giving rise to orphan households headed by older siblings. Evidence of the exact number of such households is scant, although one study found that in Rakai District, Uganda, 4% of households were headed by children between 12 and 16 years old. Increasingly, in communities with major AIDS epidemics, families are cared for either by the very young or the very old.

What is being done to help?

There are thousands of small-scale community-based schemes around the world that aim to provide care and support to children orphaned by AIDS. Most orphan programmes, however, can help fewer than a hundred children at a time. In countries like Thailand, Uganda and Zambia where tens or hundreds of thousands of children are affected, a much larger response is needed. According to SafAIDS News, a survey of orphan households conducted in the Ndola region of Zambia found that 86% received no help from community non-governmental-organizations (NGOs) or the government.

Care and support requires more money, but in the world’s poorest countries, children orphaned by AIDS are just one of many competing urgent priorities. Governments of many of the worst affected countries are under intense pressure to cut back on social and health services. Resources available to NGOs and international agencies are largely insufficient and, in some cases, support efforts are poorly coordinated.

Reaching children before their parents die

Problems for children affected by AIDS really begin when a parent becomes ill. The number of orphans who have lost a parent to AIDS are greatly outnumbered by children whose parents are ill but have not yet died.

In 1994 representatives from NGOs throughout southern and east Africa drew up the "Lusaka Declaration on Support to Children and Families affected by AIDS". This Declaration urges that wherever possible, efforts should be made to keep children in AIDS-affected families in their communities. These efforts, it argues, should begin before the death of the parent, and community-based NGOs should attempt to identify children at risk of becoming orphans. Home-based care schemes, in which visiting health or community support teams attend AIDS patients at home, should also be involved in helping parents plan ahead for their children’s future. Orphanages should be a last resort in providing care to those orphaned by AIDS, because the link between generations is very important, especially in Africa. If that link is broken it can perpetuate or even accelerate the breakdown of community support systems for children.

In the final analysis, all children of the world henceforth face a lifetime of risk from HIV. Children and young people in all countries, and those who care for and are responsible for them, are having adapt to this new world. The United Nations Convention on the Rights of the Child provides a framework for promoting and protecting the rights of children which can minimize the impact of the HIV/AIDS epidemic on them. Yet, despite its almost universal ratification, the response has remained inconsistent. A stronger commitment is needed world-wide to improve policies and increase action that protect and promote the rights of children. In a world with AIDS, it is even more important to remember that children’s rights are human rights and that the protection of children and their rights is everybody’s responsibility.

Through this year’s World AIDS Campaign, UNAIDS and partners are raising the issues of children living in a world with AIDS. Following this year’s theme, the 1998 World AIDS Campaign will focus on young people. If you want further information on the World AIDS Campaign, please contact Anne Winter (+41 22 791 4661) or Dominique De Santis (+41 22 791 4765). You may also visit the UNAIDS Home Page on the Internet for more information about the programme (http://www.unaids.org)