A three-year old boy with AIDS in São Paulo, Brazil. UNICEF Photo/Sean Sprague.

Given all that we now know about human immunodeficiency virus (HIV) and acquired immune deficiency syndrome (AIDS), it is sometimes surprising, even shocking, to note how little seems to have changed. Every year, we learn about a new population affected by the epidemic or a country in which HIV prevalence has doubled within five years, quadrupled within two years, or accelerated with even greater speed. And yet a great deal of clear, well-researched information is available to national governments and policy makers from such sources as the Joint United Nations Programme on HIV/AIDS (UNAIDS) and the World Health Organization (WHO), which recently published the latest AIDS Epidemic Update, detailing the status and trends of the global epidemic through the end of 1998.

At the same time, in many countries - though by no means all - a combination of governmental and non-governmental efforts has yielded extensive public information, education and communication (IEC) programmes on HIV and AIDS. As a result, the vast majority of some national populations is at least aware of how to avoid becoming infected with the virus.

Despite the availability of increasingly accurate information on the HIV epidemic and widespread IEC programmes to help educate people on how to remain uninfected, it may appear that many Governments have still done little to respond in a substantial manner, and even the best-informed individuals continue to contract HIV. Are we all still in denial about HIV and AIDS? How can we know so much and do so little to stop the spread of the virus? People who have lived and worked within the epidemic, in Africa, Asia, Europe, Latin America and the Caribbean and North America, join me in trying to shed some light on these questions. UNAIDS also offers its view. On the subject of government action, all correspondents had at least one point in common. Governments, particularly in developing countries, have so many urgent problems to deal with that they are often hard-pressed to confront the HIV epidemic, especially if its effects are still minimal or invisible. "The Nepalese Government knows that we are at risk", writes Sujata Rana of Nepal. "But even the gravity of HIV and AIDS in neighbouring countries such as India, including the economic threat, doesn't necessarily prompt officials to respond. Nepal doesn't really have an 'economy' in the classical sense: most people are subsistence farmers. Given the overwhelming levels of unemployment and underemployment, people with economic opportunities work overseas. When they return to Nepal, those infected with HIV do not yet show signs of AIDS." Musa Njoko, an HIV/AIDS programme coordinator living with HIV, and Catherine Barrett, a human rights lawyer and programme coordinator, both from South Africa, agree.

"Many people in South Africa have lived through incredible violence and upheaval. Their priority is to try to emerge from that trauma and get on with their lives", says Barrett. "This is compounded by a lack of immediate physical evidence of illness due to HIV. Unless voters identify AIDS as a problem that needs to be dealt with now, our current Government will not be pressured into action." Musa Njoko declares: "It took our Government about 15 years to even realize that the country is in deep trouble from the epidemic. But even though every ministry took part in World AIDS Day activities last December, if you look at their budgets for 1999, you can see that nothing has been planned for HIV/AIDS. Maybe our officials are waiting for the time when all infected and affected people decide not to give their votes until we get a commitment from the Government to act." From Senegal, As Sy offers further enlightenment on why Governments give the impression of denying the magnitude of the HIV epidemic. "Institutions are composed of human beings", he says. "Government officials may speak as prime ministers or attorney-generals, but institutional decisions are strongly affected by what these officials are thinking or feeling as individuals. When a problem appears that affects health, trade, employment, agriculture, debt repaymentCeverythingCit may be easier to deny it." He also suggests that the most common type of denial, when faced with a problem as pervasive as HIV and AIDS, is simply not to react. "Or else people develop a counter-argument in an attempt to prove that it isn't true", he adds. "For example, this AIDS thing is just another way to stigmatize Africa."

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This article is dedicated to Gugu Dlamini, who lost her life in December 1998 while trying to help people in South Africa overcome denial of the HIV epidemic.

HOW HIV/AIDS STATISTICS ARE CALCULATED: UNAIDS and WHO work with national governments and research institutions to collect data on the incidence of HIV in various populations. "Sentinel surveillance systems", established in most countries, allow researchers to anonymously test blood which has been drawn for other diagnostic purposes. A typical sentinel population, especially in developing countries, is women receiving antenatal care. They have proven to be a good proxy indicator for HIV in the general population. Under this system, the rates of HIV infection found in pregnant women in large cities are extrapolated to the total urban population of reproductive age. The same is done for rural areas. A computer software programme known as "Epimodel" is used to estimate past and present incidence of AIDS and AIDS deaths in adults and children. The programme first takes an epidemic curve, reflecting the start of the epidemic, the speed at which it is growing and the level at which prevalence has stabilized or is likely to stabilize. Inputs are added concerning the natural history of HIV infection, including progression rates from HIV infection to AIDS, from AIDS to death, and transmission rates from mother to child. Epimodel combines this information with the age structure of a population and age-specific fertility rates, in order to calculate the number of adults and children currently infected with HIV, the number of AIDS cases and other aspects of the epidemic. (UNAIDS)