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We shall be condemned by future generations if this kind of passivity is allowed to continue.
With hindsight it is relatively easy to say what ought to have been done in the way of preventative measures at the end of the 1980s. There was already enough knowledge and experience to organise an effective prevention programme, but this experience did not lead to the action we now know should have been taken. Governments ducked the issue and the international community failed.
A few countries have managed to buck the trend. This is true of Uganda and Senegal in Africa. It also applies to Thailand, and to some extent Brazil. The common denominator in these countries is very active government involvement. President Museveni has played a pivotal role in Uganda. All taboos have been stood on end. Ministers and other opinion formers have actively and systematically preached "safe sex". The distribution of condoms was a matter of course. But serious attention has also been paid to questions of abstinence before marriage and faithfulness within a relationship. These countries could serve as models for others.
There is no contradiction when it comes to putting resources into prevention, and also providing support and assistance to people who have already been infected and/or fallen ill. Prevention and nursing care must go hand in hand. What is the point of undergoing tests if there is no care available if you turn out to be carrying the virus? In this respect an individual firm can play an important part. Many companies, especially in South Africa, have become actively involved in preventative work and also help to pay for and distribute ARVs among their employees.
What we must now work to achieve is co-operation between all countries of the world in a long-term and systematic campaign to slow down and eventually stop the advance of the HIV epidemic. We must not allow the worst-case scenario to become reality, and must prevent the epidemic continuing to spread for another 60 years.
What is needed first and foremost is total frankness about the disease and the ways in which it is passed on. A stop must be put to all those who continue to agitate against sex education and the use of condoms, and who think, like some parts of the Bush administration, that the disease can be controlled simply by preaching sexual abstinence.
Just as important is to mobilise sufficient funds to pay for preventative measures and the care of those who have the disease. We have a special responsibility for the welfare of the millions of orphans that the epidemic has already left in its wake.
We must think big. Even if the USA and the EU have increased their contributions significantly, it is not nearly enough. We must work towards a tripling or quadrupling of the current levels of funding. At the same time the countries at the receiving end must revise their budget priorities and make health care their number one concern.
Special efforts must be made in funding research to produce a vaccine, and to develop better and cheaper drugs. In this respect the US government has a major responsibility. Hitherto it has turned a blind eye to the activities of the giant pharmaceutical companies instead of making clear the self-evident fact that drugs must be distributed at the lowest possible prices in the poorest countries, and that the only alternative is the imposition of a compulsory licence for countries where Aids is widespread.
Finally, it is important to do everything possible to prevent the spread of the epidemic in countries like China and India. It is estimated that so far only 0.5 per cent of their population has been infected. It should still be possible to prevent a catastrophe of the kind that has befallen a large number of African countries. In order to achieve this, everything possible must be set in motion now. In a few years it will be too late.
Anders Wijkman, 2003
Member of the European Parliament,
formerly Assistant Secretary General of the UN,
member of the board of Plan Sweden
Life in the Time of HIV
"Through my photos, I wanted to make people more aware of Aids, to show the consequences of the disease and to give advice. But I also wanted to demonstrate the hope that I still have in life, despite my illness"
Julie, former photographer
Fondation Femme Plus, Democratic Republic of Congo
In 2000, Christian Aid, one of the UK's leading aid and development agencies, gave cameras and photographic training to HIV-positive women working with the Kinshasa-based women's organisation Fondation Femme Plus so that they could record images from their own lives – create their own testimony of life in the time of HIV.
Fifteen women documented their day-to-day lives with families and friends, and doctors and hospitals, and their vision of the social tragedy caused by HIV. The result, the exhibition Positive Negatives, which opened in London and Kinshasa before touring the UK and Ireland, was a unique and powerful record for their children and future generations.
Julie, who was once married, lived for a time on the streets of Kinshasa and later in churches after her husband and baby daughter died and she discovered that she was HIV-positive. Like many other women, she was ostracised and faced a life of destitution.
She began to work in the restaurant run by Fondation Femme Plus, a women's group founded in 1994, and visited the centre where FFP's 1200 members gather for social support, training and financial help. She was selected to join the small group of women being trained to use a camera. As a photographer, her images, like those of the other women, show a sometimes shocking and harsh reality. All the images are a powerful record for the women's families of their own feelings about living with HIV.
"Now I know how to take photos and I know how to describe the meaning behind a photograph," said Marie-Jea
Several of the women photographers are still working, appearing at government functions in Kinshasa to be the official "snappers". Others are no longer alive. But they have left behind a memory – images – of their lives with HIV.
Some of the women made up family albums of photographs for their children. One of the captions from Julie, who has since passed away, reads: "The photograph was taken for a family album, which will be passed on to my children as a lasting reminder of my life."
Memories
It is this sort of work that is an increasingly powerful element of support for people who are dying and for their surviving family members, especially children, "Memory work" since the early 1990s has evolved as a vital element for people living with HIV and Aids.
The long interval between infection and becoming ill and then dying that is experienced by many people gives them time to contemplate their last months or years, answer their children's questions about their illness, and make plans for their children and other dependants.
"I miss my mother's smile"
Many young orphans are sent to live with distant relatives, foster parents, in institutions or on their own, and the risk of losing their personal history is high. These children often grow up without a clear sense of their identity, their family traditions or their roots. The sense of loss is enormous.
"I miss most of all the good times with my mother, laughing with her," remembered nine-year-old Emmanuel Kalunga, speaking to Christian Aid in his grandmother's home. "I miss my mother's smile most of all."
Memory work encourages a process of reflection and discussion that allows people living with HIV to come to terms with the practical and emotional implications of their illness. It can motivate parents to acquire the knowledge and skills to make their children's futures secure, and it provides the opportunity for dialogue and a resolution to difficult topics about guardianship and inheritance with both extended family members and children.