Foreword: Lessons from the Global HIV/AIDS Epidemic
The global HIV/AIDS epidemic has taught, or retaught, us many important lessons. It has confirmed the importance of socioeconomic and cultural factors in health. It has shown that when human rights are not protected, people are more vulnerable to disease. And it has reminded us that, although infectious diseases once seemed to be on the wane, a new worldwide epidemic can break out at any moment.
Perhaps the most sobering lesson of the past 15-plus years is that the HIV/AIDS epidemic has not turned out to be a disease outbreak that science can quickly bring under control. Both a vaccine and a cure remain elusive. There are no quick fixes, technological or otherwise, to prevent new infections or eliminate the lingering societal impact of millions of AIDS deaths among individuals in their peak productive and reproductive years.
The most hopeful lesson is that, even though our approaches are imperfect, we are not powerless against the epidemic. Communities in the developing world, and even some industrialized nations as a whole, have managed to stabilize or reduce the rate of new HIV infections, provide care and support for those infected or affected, and combat fear and rejection of people living with HIV and AIDS.
Scientific advances hold out even greater hope for the future. Combined antiviral drugs promise longer and higher quality survival for HIV-infected people. Antiviral treatment for women and their newborn babies has been shown to reduce mother-to-child transmission. Progress is being made in developing vaginal creams and other "barriers" to HIV that women can apply. Insights for both vaccine and drug development are emerging from the study of individuals who appear resistant to HIV infection or who remain remarkably disease-free years after becoming infected. Yet with more than 20 million HIV-infected people alive and facing an unpredictable and generally fatal course, and with more than 7,500 new HIV infections occurring each day, it is premature to claim that we have turned the corner.
Difficulties and obstacles abound. Denial has diminished since the early years of the epidmic but continues to block political commitment and individual action. Those most affected -- the people who are infected with or at risk of HIV -- still often have no voice in designing and planning action and services. Harm reduction measures, such as access to condoms or sterile needles, continue to be controversial despite their effective track record. In countries with resource-starved or poorly managed health services, people with HIV/AIDS suffer for lack of the simple drugs that could ease their pain, itching, or nausea, not to mention a total lack of access to antiviral drugs.
Prevention is still divorced from care and support, and measures are geared to outbreak control instead of lifetime HIV risk management. Moreover, in the context of people's lives, many key prevention messages are irrelevant. Where homosexuality is criminalized or heavily stigmatized, gay men may have no realistic way of obtaining condoms to prevent HIV infection or health care once they have HIV or AIDS. To take another example, mutual sexual fidelity may protect from HIV, but it is something over which many married women have no control. The lack of realistic options for self-protection -- whether because of poverty, power imbalances, or denial of human rights -- results in appalling vulnerability for billions of men, women, and children.
Only an expanded response to the epidemic gives us a chance of grappling with these problems. The response needs to be of greater duration, in keeping with the permanent nature of the AIDS challenge; of greater quality, bearing in mind the ineffectiveness of technically inappropriate and poorly managed action; and of greater scope, encompassing but reaching far beyond the health sector.
The fact that HIV and its repercussions will be with us for generations implies the need for a sustainable response, one that encourages openness about the epidemic among individuals and communities and that builds up their coping capacity. Among other things, coping means lifelong acceptance and inclusion of people with HIV/AIDS in the household or community and the adjustment of personal behavior to the lifelong risk of HIV infection.
But while the action required must always be viewed through the lens of human needs, it cannot be limited to the personal or individual level. We must act on the broad structural context of prevention, care, and impact alleviation.
At one end of the spectrum, we need to tackle the underlying socioeconomic and structural factors that make people vulnerable to HIV/AIDS and by giving them few realistic options for self-protection. Empowerment for action is one obvious remedy. To return to the example of women, vulnerability could be lessened through increased education, access to credit, and equitable rights in the event of divorce. Clearly, such action could simultaneously diminish women's vulnerability to other ills with similar socioeconomic roots, including violence and unwanted pregnancy.
At the other end of the spectrum, we might want to reduce risk options, for example by raising taxes on risk-related products such as alcohol or through "seat-belt" constraints such as the Thai policy of obligatory condom use in brothels, which eliminates the client's risk option of unprotected sex and at the same time "empowers" the sex worker to insist on condom use.
We must be wary of venturing too far into structural or coercive risk reduction, however, and not only for human rights reasons. Government coercion is rarely neutral, because it tends to constrain the powerless rather than the powerful. For example, although sexual HIV transmission is obviously a two-way risk, far more coercion is typically applied to sex workers than to sex work clients, increasing the power imbalance instead of leveling the playing field.
Like prevention, the provision of care and support for people affected by HIV and the alleviation of the epidemic's impact necessarily involve a wide range of actors, processes, and sectors. Not all the links are obvious, however. For example, in high-prevalence countries, the interface between AIDS and schools is not limited to introducing lifestyle skills or sex education into the curriculum but involves training extra principals and teachers to replace those dying of AIDS. The implications of AIDS for agriculture are not simply that children are taken out of school to weed fields that their sick parents cannot tend but also the threat that parents will not live long enough to pass on their precious knowledge of soil conservation and crop rotation. In sum, an expanded response also means weaving AIDS issues and implications into social and economic development.
Realistically, what can an expanded response achieve? A smaller epidemic involving a more tolerable level of suffering. Expanded response will not, however, stop the epidemic. Short of universal population coverage with a highly effective HIV vaccine, we cannot expect all transmission to cease.
In terms of future challenges, what we do about AIDS depends on how we look on the epidemic -- as a mere disease, a failure to respect religious codes, an outcome of differentials in sexual behavior and sexual decision-making between men and women, a human rights issue, or another tragic correlate of poverty and deprivation, to name but a few of the paradigms that have evolved since the start of the epidemic. It is illusory to think that these competing paradigms can ever be reduced to a single world view. The overlaps, such as between the human rights and the poverty paradigms, and even the frank contradictions, for example between biomedical and religious models, mirror the complexities of real life. Sometimes we are at a loss even to understand why a particular community has been successful in lowering transmission. Humility will help us avoid the straightjacket of AIDS orthodoxy and narrow-minded political correctness.
Nevertheless, there do appear to be some universally applicable principles. One is the need for the simultaneous use of multiple approaches that can work together. Another principle is never to lose sight of the epidemic's disproportionate focus on individuals and communities already facing other health, social, and economic challenges, such as women, young people, sexual and ethic minorities, refugees, drug users, and economically disadvantaged populations. It is no coincidence that more than 90 percent of all new infections now occur in the developing world. An expanded response from the industrialized countries is essential today but also tomorrow, as more effective drugs, HIV barriers, and hopefully vaccines are developed and access by people in the developing countries becomes an ever-greater moral imperative.
As people increasingly demand to know their HIV infection status, a further challenge will be to provide them with voluntary counseling and testing. This can open the way to new ways of coping with the epidemic. Counseling and HIV testing, followed by mutual agreement and trust by the partners to protect each other from HIV, may become the standard prelude to a long-term relationship, with or without procreation. It might be particularly useful in communities where any prospective partner has a high likelihood of being infected, such as parts of Africa where 20 percent of 20-year-olds have HIV. A related challenge will be to offer more effectively tailored support for the real needs of people diagnosed with HIV infection, not only their right to nondiscrimination in areas such as housing, employment, and travel, but their right to care and their needs for intimacy during the decade or more that they can expect to live with the virus.
In conclusion, the worldwide HIV/AIDS epidemic has become a permanent challenge to human integrity and solidarity. Given the scale of suffering, given the proven effectiveness of several approaches, and given the prospect of furthering other human goals through the fight against AIDS, an expanded response makes ethical and practical sense. Instead of letting AIDS turn back the clock, let us use our response to the epidemic to turn humanity's clock ahead.
Encyclopedia of AIDS $25 US/832 pp/Illustrated
For more about this book, or to order, click here.
Encyclopedia of AIDS $25 US/832 pp/Illustrated
For more about this book, or to order, click here.
It is a part of the publication The Encyclopedia of AIDS.