Henning Mankell - I Die, but the Memory Lives on

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 cannot benefit from nevirapine.

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.

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.