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For children uncertain of their future without parents, memories – in the form of a book or an image – can provide a basis for a more secure future.
Memory work can give children a link to their past and help them to build a "portable" identity, understand the loss of their loved ones and develop more self-confidence, resilience and hope for the future. Memory books, boxes and baskets have been created to provide a place for the tangible pieces of a person's life. Through the collection and discussion of the stories, photos, drawings, souvenirs, body maps, family trees and other mementoes, these memory stores help families address and cope with disease, death and grief, document prematurely shortened family life, plan for children's futures, and reduce the fear that many children have as they consider life without their parents.
The increased availability of drugs, and the resultant prolonging of life, may reduce the urgency of memory work as death ceases to be the most pressing concern of people living with HIV. But work with memories will undoubtedly remain a unique way of confronting difficult issues and creating links with the past for children living in uncertain times.
Today's emergency
Today there are more than 40 million people living with HIV. In 2003, an estimated five million people became infected. Three million people died. These days, 95 per cent of people living with HIV live in developing countries. Almost three-quarters of them live in Africa.
HIV is often linked to poverty. It is a vicious circle: poor people are often more vulnerable to HIV; HIV makes formerly productive individuals and families poor. On a national scale, HIV has a devastating effect on the economies of highly affected countries. By the end of 2004, it is estimated, HIV will cut GDP by a quarter in many southern African countries.
The recent food crisis in sub-Saharan Africa was due in part to HIV. HIV has eroded agricultural productivity as men and women of working age die. People who are living with HIV are also more vulnerable during food shortages. James Morris, executive director of the UN World Food Programme, summarised the situation: "The issue of HIV/Aids is so overwhelming that it will change this part of the world [sub-Saharan Africa] for a long time to come – its impact on women and children; its impact on the labour force, on the local public and private economies. The Aids crisis in Africa will ultimately have more impact on food supplies than recurrent droughts."
The effect of HIV does not stop there. School enrolment is falling in many parts of Africa. In Swaziland, the number of children in school has fallen by a fifth. Girls, in particular, are more likely to be deprived of education as they are taken out of school to earn money or to care for sick parents and relatives.
All walks of life
HIV affects everybody, in every walk of life. Deaths among educated groups of people – teachers, health workers, key community members including priests – have led to a huge skills shortage. In Zambia and Malawi health workers have suffered a five- to six-fold increase in illness and death. The deaths of so many health professionals add to the difficulty of delivering health care in an already overburdened system.
The widespread effects of HIV are not confined to Africa. Eastern Europe and the former Soviet Union are seeing the rapid emergence of epidemics, and HIV prevalence is continuing to rise in Latin America and the Caribbean. In Haiti, six per cent of the adult population aged 15-49 is infected with HIV. In Asia, an estimated six million people live with HIV. Many are in the poorest and most vulnerable communities.
In UK and the United States, HIV prevalence rates continue to rise, too. But as treatment is widely available, the visible consequences of young adult illness and death have almost disappeared.
Some successes
The history of HIV has been marked by some successes – and many failures. Some countries, where there has been strong political leadership, have shown that HIV can be prevented and the crisis turned around. But elsewhere, political and religious leaders are turning a blind eye with terrible and fatal consequences. The opportunities offered by new drugs and the hugely energetic and committed efforts of local community groups are being ignored at the cost of lives.
Mother-to-child transmission
One notable success has been the prevention of transmission of HIV from mothers to children during birth and early infancy.
The Atlanta-based Center for Disease Control and Prevention reported its first case of possible mother-to-child transmission in 1982, and in 1985 HIV transmission through breastfeeding was described. Without interventions, mothers infected with HIV have about a one-in-three risk of passing the virus to their babies. In 1994, a study showed that the antiretroviral drug AZT could halve the rate of transmission. This landmark discovery was followed by a further trial in Thailand, which showed that another regimen – cheaper and easier for patients to take – could also halve transmission, even in poor communities.
In 1998 prevention of mother-to-child transmission became even simpler and cheaper. A single dose of the antiretroviral nevirapine given to the mother during labour and a single dose to the newborn baby was found to be effective in preventing HIV. The drug company Boehringer Ingelheim which made nevirapine then offered the drug free to developing countries with programmes to prevent maternal transmission. Today, in industrialised countries, mothers with HIV can take combination antiretroviral therapy, have routine caesarean sections and offer their infants breast-milk substitutes. This has reduced the risk of transmission from mother to baby to just one per cent.
With cheap and easy interventions available, prevention of mother-to-child transmission is becoming more widely possible – in theory at least – in poor countries. However, in developing countries, where the vast majority of HIV-positive mothers live, very few currently have access to HIV testing. Therefore they ca
As with everything in the story of HIV, nothing is easy, simple or inexpensive. The issue of infant feeding, for instance, offers both possibilities and risks. In the UK, every woman with HIV is advised to use infant formula to feed her child, to avoid transmitting HIV through breast milk. In developing countries, however, those few pregnant women who do have access to testing, and subsequent access to nevirapine, are faced with difficult infant-feeding choices. Even if baby milk is available, it can be expensive. Access to clean water is essential, as is fuel to prepare feeds. There are also social obstacles; sometimes feeding newborn babies with infant formula is tantamount to declaring oneself HIV positive.
Coming to life: drug treatment
In the 19 years since AZT was identified, there has been remarkable progress in drug treatment for people with HIV. In 1995, a new class of HIV drugs, called protease inhibitors, was discovered. These, usually combined with two other anti-retrovirals, have proved to be highly effective at preventing HIV replication and thereby reversing the suppression of the immune system caused by HIV. Combination therapy converts fatal HIV into a chronic manageable condition such as diabetes.
By 1997, for the first time since the outbreak of the HIV epidemic, the number of HIV deaths in the US had dropped dramatically. The death rate in the UK also fell, and places like the London Lighthouse hospice closed residential units once used to care for those who were terminally ill with HIV.
Early HIV regimens were complex and often unpleasant. It was not uncommon for patients to take up to 20 tablets a day, often with different food restrictions, and the drugs sometimes had adverse effects and serious interactions. Today modifications of the earlier drugs have made them less toxic and combining drugs has made it possible to treat HIV with a single daily combination tablet. Although laboratory monitoring is preferred, lack of access to laboratory facilities – the norm in many parts of the world – is no longer seen as a barrier to using antiretroviral therapy.