The price of life

The other major development in the antiretroviral story is more recent and has to do with price. In 1989, the cost of AZT was US$7000 per year. When combination therapy became available in the UK after 1995, the cost of a year's treatment was often in excess of £12,000 (roughly US$18,000). With annual per capita health spending in many of the most-affected countries of less than £10 (around US$15), it was hardly surprising that virtually no-one in developing countries could afford treatment.

In response, Aids activists in both the industrialised and the developing world mounted intense campaigns. They lobbied governments to allow parallel importation of generic drugs avoiding patents, and they demanded that drug companies cease what they called "price gouging" and "profiteering" and reduce their prices significantly.

These campaigns have been highly successful. Generic combination therapy is now imported into countries such as Zambia, where it is available at less than £20 (US$30) per month. Although even these reduced prices keep the drugs out of the reach of the majority of people, many of my former colleagues and friends in Zambia – doctors, nurses, teachers and priests – can afford them and are today, five years since I left Zambia, still alive.

A global health emergency

This price reduction has also led world leaders and international donors to support efforts to increase access to treatment. Worldwide, of the five to six million people in need, only 300,000 are on antiretroviral therapy. In sub-Saharan Africa, only 50,000 people – out of the 4.1 million who require therapy – have access to drugs.

The failure to deliver antiretroviral therapy to the millions of people who need it is now seen as a global health emergency. To address this emergency, WHO has committed itself to achieving the "3 by 5" target – getting three million people on antiretroviral therapy by the end of 2005. It is up to the governments of the rich countries to find the money to do this.

A community response

Another success has been the increased role of nongovernmental and local community organisations in leading the response to HIV. Whether in churches or campaigning groups, community-based HIV work is a response to the witnessing, by community workers, of the tragedy they see unfolding around them. While governments remain the crucial element in helping to turn around the trajectory of the virus – only governments have the power and funding to create a national response to the crisis – local organisations have the sensitivity to, and knowledge of, local communities which makes them especially effective.

Many failures

Yet as significant as these successes are, the deaths and new infections go on.

Effective HIV prevention is needed everywhere. There are no easy solutions. Condoms prevent sexual transmission. Clean needles prevent transmission in health settings and among drug users. But lack of funding and inadequate basic infrastructure for. health and education have prevented programmes from being effective – or even, particularly in post-conflict nations such as Sierra Leone or Angola, from reaching people.

Social barriers to changing sexual behaviour are often complex and little understood, and current ways of promoting safe behaviour are not effective. Even in the UK, with universal access to sophisticated health care and education, rates of sexually transmitted disease are alarmingly high among young people and rates of HIV infection continue to rise – particularly among vulnerable groups. If highly populated nations such as India, China and Nigeria – which until now have had relatively low prevalence rates – do not mount effective HIV prevention measures, the global toll of HIV infections will be even more enormous.

Stigma and positive leadership

A unique feature of HIV is the overwhelming nature of the stigma. No other infectious disease has been so demonised. Stigma and denial are the greatest barriers to HIV prevention. On World Aids Day in 1995, Nelson Mandela called on all South Africans to "speak out against the stigma, blame, shame and denial that has thus far been associated with this epidemic". Three years later, neighbours beat to death the South African Aids activist Gugu Dlamini after she revealed her HIV positive status on television.

In countries such as Uganda that have been successful in reversing HIV rates, efforts to challenge stigma have been key. This has been achieved by involving people living with HIV in the development and the implementation of HIV programmes. HIV-positive priests and religious leaders, politicians and members of the armed forces, pop stars and sports personalities can all be open about their status. They can effectively challenge stigma and denial, and promote compassion and understanding in their communities. But where stigma is not addressed – in the majority of countries – HIV is spreading virtually unchecked.

Orphans

A tragic consequence of the HIV epidemic is the rapid rise in the number of orphans, and the consequent rise in the number of households headed by children and grandparents. By the end of 2003, more than 14 million children had been orphaned by HIV/Aids. It is estimated that in some countries in sub-Saharan Africa, poor households have an average of four additional dependants to care for. UNAIDS reports that 40 million children in developing countries will lose one or both their parents to HIV by 2010.

"Every day there are more and more children on the street," reports Pascal Rukengwa, director of Humanité Nouvelle, another organisation supported by Christian Aid in Kinshasa. "Among these are more and more children whose parents have died of Aids." His organisation now runs a theatre group and a day centre for these children and helps them develop skills such as shoe-shining so that they can work rather than beg and steal for a living.

Creating memories

HIV has changed the way we look at public and private memories. Last century, millions of young men were killed in two world wars. Public memorials were dedicated in their honour. In contrast, the flu epidemic in 1918-1919 left somewhere between 20 and 40 million people dead. There are very few commemorations in their memory. But the gay community, affected first by HIV, needed to make its own statement in response to this tragedy. HIV was killing young, articulate, creative gay men in their prime, and their community was determined not to forget.

In 1987, a gay-rights activist named Cleve Jones made the first panel for the Aids memorial quilt, in memory of his friend Marvin Feldman. This was the start of the "Names Project", a global initiative in which friends and families remember loved ones lost to HIV by creating a quilt panel representing the life of that person. The project provides a creative means for remembrance and healing. In addition, it has illustrated the enormity of the epidemic, increased the general public's awareness of HIV and Aids, assisted with HIV prevention education activities and helped raise funds for community-based Aids service organisations. Today, there are Names Projects in 43 countries, and 44,000 quilts have been made to commemorate loved ones who have died from HIV.

In 1988, WHO designated December 1 World Aids Day. HIV is remembered publicly in many ways, in many cities – especially in Africa – on World Aids Day. Unlikely partners such as the Mothers' Union and Aids activists march arm in arm, displaying banners demanding access to treatment or promoting love and support for people living with AIDS. Candlelight vigils bring communities together to demonstrate remembrance and hope. Church services on World Aids Day provide a spiritual context which allows people to grieve for dead friends and relatives and renew their commitment to fight stigma, discrimination and HIV itself.