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."

Eric Sawyer, an American living with HIV for many years and the Director of the HIV/AIDS Human Rights Project in New York, agrees. "Moral views can get in the way of common sense", he explains. "The people most visibly impacted by HIV at the beginning of the epidemic were gays, drug users, people having sex outside of marriage, and so on. It is difficult for most people, including those who make up a government, to discuss such issues as sex, drugs, homosexuality and blood." Sawyer also suggests that some decision-makers hold the view that "immoral" people are receiving just punishment for their behaviour. Alan Greig, whose work on HIV and AIDS has led him to Africa, Asia and Europe, takes up the thread: "In Cambodia, there is frequent talk of AIDS being symptomatic of the corruption of Khmer culture and having been brought to the country by United Nations peacekeepers in the early 1990s. There is much less focus on what the epidemic reveals about gender relations in Cambodia, the history of community dislocation and the mushrooming of the commercial sex industry with rapid economic development."

Schuyler Frautschi, based on his experience in the region, feels that there is hardly a government in Latin America or the Caribbean committed to helping change the way people think about the HIV epidemic, a strategy he considers necessary to an effective response. "The Government of Brazil", he says, "which took out a loan to offer a triple therapy of protease inhibitors to every person living with HIV in the country, may be an exception." Since Governments are made up of individuals, there is a link between the perceived denial behind governmental lack of action in response to HIV and people's seeming unwillingness to change their behaviour. "AIDS is still highly stigmatized in South Africa", states Barrett. "Very few people are willing to disclose their HIV status, and most are reluctant to discuss stigmatized topics like sex and death."

Njoko gives a painful example: "Recently, Gugu Dlamini was killed by neighbours in her village in South Africa because she was open about her HIV status. If I should die", she continues, "I hope my six-year-old son will not be attacked or stigmatized as an 'AIDS orphan' because his mother was HIV positive."

"People often expect simple answers to a complex problem", says Sy. "To understand the epidemic, we have to question ourselves permanently, how we treat people, our own behaviour, our self-esteem, and what we do both publicly and privately. We come to feel shame about many of these things, but it is often easier to deny it than to change." Sawyer suggests that denial can be due to internalized homophobia, in the case of men who have sex with men, or lack of self-esteem for many other people who do not protect themselves. "Many people feel subconsciously that they are not worth protecting, even when they know the facts", he adds. Sujata Rana agrees: "Many drug users, for example, are already so marginalized and despondent because of their dependency that they figure, 'so what if I die from HIV? I don't have any family or friends, anyway'." And it is human nature, she asserts, to take risks. Frautschi offers a similar explanation: "Human beings are complicated. All the information in the world hasn't helped enough when it comes to the risks of tobacco, alcohol and stressful jobs."

Eric Sawyer, an American living with HIV for many years and the Director of the HIV/AIDS Human Rights Project in New York, agrees. "Moral views can get in the way of common sense", he explains. "The people most visibly impacted by HIV at the beginning of the epidemic were gays, drug users, people having sex outside of marriage, and so on. It is difficult for most people, including those who make up a government, to discuss such issues as sex, drugs, homosexuality and blood." Sawyer also suggests that some decision-makers hold the view that "immoral" people are receiving just punishment for their behaviour. Alan Greig, whose work on HIV and AIDS has led him to Africa, Asia and Europe, takes up the thread: "In Cambodia, there is frequent talk of AIDS being symptomatic of the corruption of Khmer culture and having been brought to the country by United Nations peacekeepers in the early 1990s. There is much less focus on what the epidemic reveals about gender relations in Cambodia, the history of community dislocation and the mushrooming of the commercial sex industry with rapid economic development."

Schuyler Frautschi, based on his experience in the region, feels that there is hardly a government in Latin America or the Caribbean committed to helping change the way people think about the HIV epidemic, a strategy he considers necessary to an effective response. "The Government of Brazil", he says, "which took out a loan to offer a triple therapy of protease inhibitors to every person living with HIV in the country, may be an exception." Since Governments are made up of individuals, there is a link between the perceived denial behind governmental lack of action in response to HIV and people's seeming unwillingness to change their behaviour. "AIDS is still highly stigmatized in South Africa", states Barrett. "Very few people are willing to disclose their HIV status, and most are reluctant to discuss stigmatized topics like sex and death."

Njoko gives a painful example: "Recently, Gugu Dlamini was killed by neighbours in her village in South Africa because she was open about her HIV status. If I should die", she continues, "I hope my six-year-old son will not be attacked or stigmatized as an 'AIDS orphan' because his mother was HIV positive."

"People often expect simple answers to a complex problem", says Sy. "To understand the epidemic, we have to question ourselves permanently, how we treat people, our own behaviour, our self-esteem, and what we do both publicly and privately. We come to feel shame about many of these things, but it is often easier to deny it than to change." Sawyer suggests that denial can be due to internalized homophobia, in the case of men who have sex with men, or lack of self-esteem for many other people who do not protect themselves. "Many people feel subconsciously that they are not worth protecting, even when they know the facts", he adds. Sujata Rana agrees: "Many drug users, for example, are already so marginalized and despondent because of their dependency that they figure, 'so what if I die from HIV? I don't have any family or friends, anyway'." And it is human nature, she asserts, to take risks. Frautschi offers a similar explanation: "Human beings are complicated. All the information in the world hasn't helped enough when it comes to the risks of tobacco, alcohol and stressful jobs."

UNAIDS helps to put the issue of individual denial in perspective. "Social factors such as power relationships and gender inequalities make some groups more vulnerable to HIV", the Programme reports. "What good is it to a woman to know how HIV is transmitted when she has no choice but to have sex with an unfaithful husband?" Barrett elaborates: "For many people in South Africa, especially women, behaviour change is simply beyond their control. It is believed that married women with only one partner are now highly vulnerable to HIV infection. You also can't underestimate the fact that there is no cure for AIDS and very little relief for people in African countries, once infected."

"Prevention fatigue" and the "norm" of safer sex passing out of the public consciousness were mentioned by other correspondents as reasons why some people may have reverted to unsafe behaviour. "In the United States and other wealthy countries", explains Sawyer, "the introduction of life-prolonging medications has misled a lot of people. We don't see the illness, suffering and death around us anymore, so the sense of urgency around prevention has decreased."

What is the solution to overcoming denial of the existence of HIV and AIDS? "It is a matter of mobilizing energy, anger and compassion around key questions of values and inequities", says Greig. "I think we're doing the best we can right now", offers Frautschi, "with one exception. We need to stop blocking the flow of information about HIV to young people." UNAIDS agrees with the latter point: "Unlike older people, young people don't have to change their behaviour, if they are empowered to adopt healthy, safe habits from the start. They are the key to stopping this epidemic."

As the preceding discussion illustrates, government inaction and individual denial in the face of HIV and AIDS are not straightforward issues and cannot be banished through simple solutions. One thought which we must keep in mind is that even if an effective HIV vaccine is discovered tomorrow, it will not be immediately or easily available to the vast majority of people at risk of infection. Nor will it remove the virus from those who have already contracted it. We need to learn to live in a world where HIV is part of the environment, but without abandoning our efforts to deal with the epidemic.

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)

HIV/AIDS IN THE WORLD: DECEMBER 1998 Cumulative number of people infected: 47.3 million; People living with HIV in 1998: 33.4 million; People newly infected in 1998: 5.8 million; AIDS deaths in 1998: 2.5 million; Total number of AIDS deaths: 13.9 million. (UNAIDS/WHO) POINT OF FACT: 16,000 new HIV infections occur each day; 89% of people with HIV live in sub-Saharan Africa and Asia. In 1997, 1.6 million children lost their parents to HIV/AIDS.

POINT OF FACT: Of the 3.8 million children under 15 who have lived or are living with HIV, 2.7 million have already died.