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Coming to terms with the AIDS pandemic.

Faltering national and international programs must be reinforced to meet the growing crisis.

More than a decade after acquired immune deficiency syndrome (AIDS) was recognized, the world has become ever more vulnerable to the pandemic. Effective programs have been developed to prevent human immunodeficiency virus (HIV) infection and to mitigate the effects of HIV/AIDS on people and communities. Indeed, the world has the knowledge needed to bring AIDS under control. Yet, while the pandemic pursues its inexorable course, the global response to it has weakened and become fragmented.

There is a growing gap between the quickening pace of the pandemic and our faltering efforts to contain it. As increasing numbers of people are directly or indirectly affected, demands for prevention and care increase. Meanwhile, there is a growing lack of coordination among national and international AIDS programs. International resource mobilization has stagnated or even declined, and health programs are under strong pressure to treat AIDS as if it were just another disease.

AIDS is not just another disease. The scope of the pandemic, its extraordinary mortality rate, its interaction with other infectious diseases, and most of all the fact that it primarily strikes adults in their most productive years make it a uniquely devastating medical and social phenomenon. As some effective, community-based AIDS programs have demonstrated, our ability to come to terms with the disease demands a broad vision of the social factors that make people vulnerable to HIV infection and a systematic implementation of techniques to reduce that vulnerability. At the global level, however, the inadequacy and fragmentation of national and international programs means that we are not keeping pace with the progress of the disease.

Relentless expansion

In its second decade, the HIV/AIDS pandemic continues to expand relentlessly. In 1981, when AIDS was discovered, an estimated 100,000 people worldwide were infected with HIV. By early 1992, an estimated 12.9 million people around the world--7.1 million men, 4.7 million women, and 1.1 million children--had been infected with HIV. Of these, about one-fifth (2.6 million) developed AIDS, and nearly all of them (2.5 million) have died.

Today, the pandemic continues to reach new communities throughout the world. An explosion of HIV has occurred in Thailand, Burma, and India, where more than 2 million people have been infected in just the past few years. Cases of HIV/AIDS are now reported from areas that had previously been relatively untouched, such as Paraguay, Greenland, and the Pacific island nations of Fiji, Papua New Guinea, and Samoa. The global implications are clear: Geographic boundaries cannot protect against HIV.

The pandemic is also becoming more complex as it matures. It is composed of thousands of separate, yet linked, community epidemics. Every large metropolitan area affected by AIDS--Miami, New York, Bangkok, London, Amsterdam, Sydney, Rio de Janeiro--now contains several subepidemics of HIV going on at the same time. This reflects emerging trends in patterns of transmission. In Brazil, the proportion of HIV infections linked with intravenous (IV) drug use has increased more than 10-fold since the early 1980s; in the Caribbean, heterosexual transmission has replaced homosexual transmission as the major mode of HIV spread. Thus the populations most affected by the epidemic also change over time.

Although some communities have succeeded in slowing the transmission of HIV, its spread has not been stopped in any community or country in the world. On the contrary, the pandemic has not yet reached its peak in any country. From 1992 to 1995, the total number of HIV-infected adults will increase by 50 percent. During the same period, the number of children infected with HIV will more than double, from 1.1 million to an estimated 2.3 million. The number of children orphaned by AIDS will more than double in the next three years.

By the end of this decade, between 38 million and 110 million adults and more than 10 million children will have become infected with HIV. The largest proportion of HIV infections will be in Asia (42 percent), surpassing sub-Saharan Africa (31 percent), Latin America (8 percent), and the Caribbean (6 percent). Up to 24 million adults and several million children will have developed AIDS--10 times as many as today. Clearly, the pandemic's major impacts are to come.

Only a global approach will be capable of controlling the HIV/AIDS pandemic. The spread of HIV infection is inextricably associated with problems that cannot be solved at the local or national level. Even a technical solution, such as an AIDS vaccine, will fail if its application is limited to one country or one part of the world. If an AIDS vaccine is effective only against the strain of HIV that is dominant in one part of the world, resistant strains will soon spread to areas where the vaccine is used. Similarly, if a vaccine is available only to wealthy nations or individuals, it cannot succeed in controlling the global epidemic.

The response

Following a phase of intense scientific research and remarkable discoveries in the early 1980s, enough understanding of the means to prevent the further spread of the pandemic had been acquired. Prevention and care began at the grassroots level. Starting in the early 1980s, groups of volunteers and activists in the industrialized countries had begun to form organizations to provide care to their sick friends, educate their peers, and advocate for more attention and funds. These non-governmental organizations (NGOs) represented the first significant response to the disease. Indeed, NGOs have been at the forefront of the response to AIDS in most countries of the world.

The pressure exercised by these community-based organizations in turn led to the creation of national AIDS programs in the industrialized countries. By the mid-1980s, governments in industrialized countries had created nationally coordinated programs to conduct mass media campaigns, introduce HIV screening in blood transfusion centers, and collect epidemiological information to track the epidemic.

By 1987, the accumulation of knowledge about AIDS prevention combined with political commitment to do something about it set the stage for a global mobilization against AIDS. At the World Health Assembly, the 167 member states of the World Health Organization (WHO) declared AIDS a global emergency. WHO was directed to formulate and coordinate a global strategy for the prevention and control of AIDS. Designed to establish clear, common principles across programs and countries, the global strategy had three objectives: preventing HIV transmission, reducing the personal and social impacts of the pandemic, and unifying national and international efforts against AIDS. Each of these objectives called for policy development and advocacy; exchange of information, experience, and technical know-how; coordinated research; and support to country-based initiatives--in the developing world in particular. WHO then launched a Global Program on AIDS (GPA) to advance these objectives.

In October 1987, the United Nations General Assembly convened a special session on AIDS--the first time a disease was debated in this forum. The resulting resolution called for strong, coordinated international action. Gradually, a variety of UN agencies became involved, with varying levels of commitment, in the work against HIV/AIDS. The official development assistance agencies mobilized to support national and international endeavors.

Over the following years, a series of multilateral meetings created a sense of "globalism" more intense than had been seen in any disease control program. For unlike smallpox, tropical diseases, or even tuberculosis prior to its resurgence in the 1990s, AIDS had become a reality for both industrialized and developing nations.

The GPA allocated more than half of its resources to helping developing countries establish national AIDS programs. By 1988, of the 167 member states of WHO 144 had received support from GPA, and by the end of 1989, this number rose to 159. A global response was clearly under way.

By 1990, virtually all countries in the world had established national programs, albeit at different levels of maturity and quality. The importance of non-governmental efforts had been recognized, and an unprecedented level of resources had been mobilized nationally and internationally to support AIDS programs.

How much success?

Now that this massive response has begun, the obvious question is how well is it working. Unfortunately, we can't answer with any certainty. Indeed, one problem inhibiting the success of national programs is the lack of adequate evaluation. Almost half of the programs in industrialized countries have not undergone any large-scale assessment. In developing countries, the involvement of international agencies has provided an impetus for broader evaluation; nonetheless, one-third of these programs have not been evaluated.

When national programs have been reviewed, their achievements have generally been measured by the degree to which they have raised awareness about AIDS and distributed commodities, such as condoms, as well as by the managerial efficiency with which activities have been planned, implemented, and financed. The monitoring systems used by these programs are not sensitive enough to measure their impact more concretely--that is, to rate their success at reducing an individual's present and future vulnerability to HIV.

So far, national AIDS programs appear to have been successful in a number of ways. They have sprung up quickly; they have improved public awareness on AIDS-related issues (although they have not always prevented--and may even have generated--misperceptions within certain groups); they have raised important human fights issues and in some instances have managed to prevent violations of these rights; and they have exchanged information and, in some cases, funds and skills at the international level. The industrialized countries have also been able to increase drastically the safety of blood and blood products and to establish diagnostic and treatment programs reaching most--but not all--people in need. In developing countries, however, these efforts have been constrained by a lack of resources, weak infrastructure, and other pressing issues.

At the same time, many programs have been criticized for poor priority setting, weak management, and an inability to involve other health programs and NGOs more effectively. Finally, declining resources and rising costs threaten the sustainability of many prevention and care programs.

Program reviews provide crucial opportunities to learn from experience in an expanding field that demands creativity, innovation, and, in some situations, risk taking. For instance, Switzerland experimented with the creation of areas in Zurich and Bern where IV drug users could obtain drugs and sterile injection equipment without the interference of law-enforcers. During a trial period of several months, a drug market began to spring up around the area. Upon evaluation, reviewers determined that the reduction in the risk of HIV infection was not sufficient to offset this drawback. In contrast, projects in Greece, Kenya, Tanzania, and the United States showed that the promotion of condoms among sex workers had led to a lower infection rate in this population and had enhanced the acceptance of safer sexual practices among their clients.

To document such successes and shortcomings requires pre-stated goals and quantified targets, which are too rarely found at the design stage of HIV prevention and care initiatives. All programs should build an evaluation element into their initial design, specifying the criteria of success and failure and the ways these will be assessed. In addition, more attention must be paid to ensuring the replicability and long-term sustainability of small-scale projects. Finally, there must be a candid exchange of information on the results of program evaluation.

Although periodic internal evaluations can provide useful information to program managers, staff, and funding agencies, only external reviews ensure that experience and advances in prevention, care, and research are shared with others. External reviews by independent experts or, in the case of national-scale program reviews, international observers, should be performed regularly and their findings published widely. Strikingly, a survey of the review procedures of 24 national AIDS programs found that 11 of 15 developing countries but only 1 of 9 in the industrialized world (Switzerland) invited international participation. The unique nature of the AIDS pandemic and the speed with which programs have been established makes rigorous external review essential.

Bearing the cost

As more and more people and communities are affected by the pandemic, the cost of prevention, care, and research has become a critical issue. Many countries, already under severe economic strain, are reluctant to invest in the programs needed to bring AIDS under control.

According to the Global AIDS Policy Coalition, the total amount spent worldwide on AIDS prevention, care, and research during 1990-91 was between $7.1 billion and $7.6 billion. Interestingly, about 95 percent of this money was spent by the industrialized countries, which have less than 25 percent of the world population, 18 percent of the people with AIDS, and 15 percent of HIV infections. In these countries, the majority of AIDS spending is devoted to care and research. In developing countries, however, there are few resources available for these purposes; the larger share of spending is invested in program management, blood safety, and prevention campaigns.

Industrialized as well as developing countries have great difficulties keeping up with the cost of AIDS care. In 1990-91, the annual cost of care for an adult with AIDS varied from $32,000 in the United States to $22,000 in Western Europe, $2,000 in Latin America, and $393 in sub-Saharan Africa. These figures approximate (in developing countries) or exceed (in industrialized countries) the per capita Gross National Product.

The life expectancy and quality of life of people with AIDS depend on their access to comprehensive, high-quality, and therefore more costly, care. In countries that do not have national medical insurance programs (the developing countries and the United States), the financial burden of AIDS care falls first and foremost on people with AIDS, their family and friends, health care facilities that must compete with other agencies for needed resources, and public financing schemes, such as Medicaid. In the United States, 40 percent of adults with AIDS and 90 percent of children with AIDS are covered by Medicaid. In recent years, there has been a dramatic shift in the source of financing of AIDS care. This trend is indicative of several concurrent factors: The cost of AIDS care continues to increase; some people with AIDS have gradually consumed their personal resources; more people from poor communities require AIDS care; and private insurance companies are finding ways to exclude people with HIV/AIDS from coverage.

On the prevention side, the situation is hardly better: Funding has dwindled as the need for effective programs grows. In the United States, federal funding for AIDS prevention actually declined, from $497 million in 1990 to $480 million in 1992. In sub-Saharan Africa, where large-scale programs with significant international cofinancing were undertaken in the late 1980s, international support is lagging, and governments are not willing or able to commit additional resources.

The health and social costs of AIDS can be made affordable if efforts are made simultaneously in three directions. First, the cost of AIDS care can be reduced and the well-being of people with AIDS enhanced by decentralizing outpatient services. Studies in France, Zambia, the United States, and several other countries have shown that alternative approaches to inpatient care, such as home, community-based, and ambulatory care, improve the quality of life of people with AIDS and reduce costs. These approaches can be replicated widely if they are adapted to local conditions. They cannot be sustained, however, unless the costs of care are financed collectively, through government or other institutions.

Second, information, education, and legislation must create a social environment that protects the individual rights of people with HIV/AIDS--specifically, the rights to free movement, housing, employment, education, and health insurance. From an ethical perspective, the disenfranchisement of people with HIV/AIDS is an infringement on human dignity and a violation of human rights. From an economic perspective, it diminishes national productivity and, by creating a dependency on public assistance, ultimately increases the cost to society.

Third, people affected by AIDS must pressure their governments to give greater priority to the health and social sectors, especially at a time when enormous savings can be made on military expenditures. Overall, governments are spending less than 0.1 percent of their total budgets and less than 3 percent of their health budgets on AIDS prevention and care. The ratio of military expenditures to AIDS-related health and education expenditures ranges from an average of 38 in industrial countries to 109 in the developing world. This can change. Thailand and Nigeria stand out as examples of countries that have significantly increased the share of national resources allocated to AIDS. Public pressure to realign government spending priorities can help bridge the growing gap between the high level of awareness and mobilization at the community level and the inadequacy or apathy of national and international responses on the other.

Reviving international efforts

International financial assistance to the developing world is not keeping up with the growth in the pandemic. Between 1986 and 1990, the industrialized nations provided a steadily growing flow of resources for HIV/AIDS prevention and care in the developing world. But in 1991, the amount of funding declined from its peak the previous year at $255 million to $237 million. That year, funding for the World Health Organization's AIDS program actually decreased for the first time since the program was established; its initial budget of $100 million was slashed by 30 percent. The downward trend in the international financing of AIDS programs in the developing world is confirmed as data become available for 1992.

The decline in support for international AIDS programs reflects a trend in overall international aid. The political transformations of the early 1990s and the lessening of the East-West tension have allowed world powers to reduce their commitment to the transfer of resources from North to South. In addition, the global economic recession has spurred affluent countries to focus on domestic or regional issues, making exceptions only for time-limited humanitarian responses to acute crises abroad.

When they do provide international aid, industrialized nations are turning away from coordinated multilateral efforts. Instead, they prefer to work independently, on a bilateral basis, with a few developing countries chosen on historical or political grounds. The fragmentation of efforts by industrialized countries has led to competition among donors in some countries. For example, seven donor countries are supporting AIDS programs in Kenya, Tanzania, and Uganda, whereas in 35 other developing countries, only one donor country is present.

Even international agencies have tended to focus their assistance more narrowly. In the 1970s, many international aid agencies spread their resources over a large number of recipient nations. This was motivated partly by the belief that scattered, narrowly targeted projects could demonstrate the feasibility of approaches that could then be replicated on a broader scale. In many cases, however, these projects were not designed to adapt to local social or economic conditions. As a result, countries were unable to replicate projects and the quantum leap toward self-reliance and self-sufficiency was not achieved. So in recent years, donor agencies have begun to concentrate their aid on fewer countries, where it can be channeled simultaneously to multiple development sectors.

Meanwhile, major international organizations are having difficulty reaching agreement on the allocation of responsibilities and coordination of activities. The UN system, for example, consists of a large number of service-oriented agencies that suffer from overlapping mandates, politicization, poor management, uneven accountability, and enormous overhead costs. The long-overdue restructuring of this system is only beginning and will take many years.

The increasing fragmentation of global policy leadership threatens international solidarity in the fight against HIV/AIDS. To reverse this trend will require a number of synergistic actions: the development of a global strategy that places HIV/AIDS in the broader context of society and development; the creation of programs in every sector to address the multifaceted implications of the pandemic; and the commitment of international agencies to participate in this effort, within the constraints of their respective mandates, to coordinate their actions with others, and to be held accountable for the extent and success of their activities. Effective AIDS prevention and care necessitates the synergistic interaction of three elements: the individual whose behavior must change to stop transmission; the programs that provide the information, services, and materials (such as condoms) that the individual needs to act wisely; and the broader social environment that provides the conditions under which individuals are empowered to control their destinies. All specific actions should be guided by this conceptual framework.

An agenda for action

It is abundantly clear that the HIV/AIDS pandemic cannot be controlled simply by providing resources to sustain existing prevention and care activities. In terms of scope, intensity, and design, existing programs must be considered necessary but not sufficient. Therefore, we propose a three-pronged strategy to confront the pandemic successfully.

The first approach is to apply lessons from existing programs that have demonstrated a reasonable measure of effectiveness. Apparently successful pilot programs in HIV prevention have been created in many diverse communities, targeting gay men, adolescent heterosexuals, IV drug users, commercial sex workers, and street children. As just one example, the incidence of HIV infection among women commercial sex workers in Kinshasa, Zaire, was dramatically reduced--from 18 percent per year to 2 percent--through a program that combined information and education, specific health and social services (counseling, diagnosis and treatment of other sexually transmitted diseases, and condom provision), and social support.

Most of these apparent successes have not been subjected to a systematic and critical analysis. We must make it a high priority to profit from the enormous wealth of community-based experience that has accumulated over the past decade. This kind of meta-evaluation could be coordinated by an independent group, such as the Global AIDS Policy Coalition, or could operate under academic or foundation auspices. In addition, we need to find out why apparently successful pilot programs have not been replicated in other communities nor extended to larger population groups.

This information will be particularly useful to existing HIV/AIDS prevention and care organizations that face the need to adapt to the changing demographics of the pandemic. In the United States, for instance, the brunt of the pandemic will soon be borne by heterosexual men and women in the inner cities. This continuing evolution creates another set of challenges for existing programs. Community programs initially organized to confront the challenges of HIV/AIDS among white gay men, for example, will experience difficulty adapting to serve a population increasingly composed of heterosexual, African-American IV drug users and their sexual partners. Disseminating the lessons learned around the world can be helpful.

The second approach is to strengthen the resource base and organizational stability of existing HIV prevention and care programs. Because an increasing number of HIV-infected people are becoming ill, virtually all care and support programs will require concomitant increases in funding and staff capability during the next several years. The relentless increase in the number of infected and ill people will create enormous logistical challenges for programs initially designed for fewer clients. In addition, many community-based programs arose through the combination of charismatic leadership and volunteer support. As years of emotionally draining work are taking a toll in staff burnout, these critically important and cost-effective efforts will need multilateral outside support.

However, the third element is the most complex and also most important. The societal factors that fuel the spread of HIV must be clearly identified and addressed. The evolving epidemiology of HIV--and the epidemiology of the response to the pandemic--show that the factor most closely linked to an increased risk of exposure to HIV is discrimination. This suggests that priority must be given to identifying and redressing societal discrimination, marginalization, and stigmatization, whether based on sex, race or ethnicity, national origin, sexual preference, social class, or any other "status."

For example, studies have found that married, monogamous women in East Africa are becoming HIV infected even though they are informed about AIDS and have access to condoms. A woman's "risk factor" is her powerlessness to control her husband's sexual behavior. She cannot refuse unprotected or unwanted sexual intercourse even if she knows that her husband is HIV-positive. In this setting, efforts to reduce HIV transmission should include measures to reform the laws governing property distribution after divorce, increase educational attainment for women, and generally improve women's social role and status. Similarly, public health efforts to work with marginalized groups (sex workers, sexual minorities, IV drug users) must ensure a modicum of respect for their rights and dignity. Individuals' ability to reduce their vulnerability to HIV/AIDS depends on the capacity of communities, national governments, and international agencies to create a just and tolerant social environment.

Clearly, efforts to improve respect for human rights and dignity go far beyond the normal definition of public health work. They will require the participation of many organizations, both official and non-governmental, that have no specific health mandate. This broad approach is, however, entirely consistent with the Institute of Medicine's definition of public health as "what we, as a society, do collectively to assure the conditions in which people can be healthy."

Since social discrimination is a "risk factor" in the spread of HIV/AIDS, a comprehensive strategy against this pandemic must involve those who are committed to promoting human rights and dignity. Health workers can teach human rights advocates about the linkage between rights and health; they in turn can be educated about the social dimensions of the HIV/AIDS problem. By forming alliances around specific problems (the fights of sex workers, the limitations of coercion-based approaches to preventing drug use, discrimination against sexual minorities), they can work toward broad, common goals.

A realistic and clear understanding of the pandemic and our response to it is the essential first step toward bringing HIV/AIDS under control. The design and implementation of a new global strategy, based on the lessons learned during the past decade, is a major challenge to the communities, nations, and institutions involved in this struggle.

Recommended reading

Tony Barnett and Paul Blaikie, AIDS in Africa: Its Present and Future Impact. London: Belhaven Press, 1992.

Lawrence Gostin and Lane Porter, eds., International Law and AIDS: International Response, Current Issues, and Future Directions. Chicago, Ill.: American Bar Association, 1993.

David Kirp and Ronald Bayer, eds., AIDS in the Industrialized Democracies, Passions, Politics and Policies. New Brunswick, N.J.: Rutgers University Press, 1992.

Jonathan Mann, Daniel Tarantola and Thomas Netter, eds. AIDS in the World. Cambridge, Mass. and London: Harvard University Press, 1992.

Jaime Sepulveda, Harvey Fineberg and Jonathan Mann, eds., AIDS, Prevention Through Education: A World View. Oxford, England/New York: Oxford University Press, 1992.

The Hidden Costs of AIDS. The Challenge of HIV Development. London/Paris/Washington: The Panos Institute, 1993.

Daniel Tarantola is a lecturer in population sciences and international health and Jonathan Mann is Francois-Xavier Bagnoud Professor of Health and Human Rights and professor of epidemiology and international health at the Harvard School of Public Health. They are two of the coeditors of AIDS in the World (Harvard University Press, 1992).
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Author:Tarantola, Daniel; Mann, Jonathan
Publication:Issues in Science and Technology
Date:Mar 22, 1993
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