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Editor's Note and Guide to Usage

1998

By First and foremost, acquired immunodeficiency syndrome (AIDS) has been a personal tragedy for millions of people throughout the world -- both those who have suffered with and died from AIDS as well as those who struggle with it still. It is these men and women who have borne the brunt of the epidemic, often with inspiring dignity and courage.

In addition to being a personal tragedy, AIDS has proven to be a social challenge, a cultural catharsis, a political quagmire, and a scientific puzzle. Perhaps more than any other threat to the public health in modern times, the AIDS epidemic has entangled not only individuals but also families and friends, cultures and communities, cities and nations throughout the world. It has cut across race and ethnicity, class and education, age and religion, gender and sexual orientation, challenging the compassion and ingenuity of humankind at every turn.

Because of the extraordinary sweep of the epidemic, tens of thousands of specialized works have been published about the social, political, cultural, and scientific dimensions of AIDS and its causative agent, the human immunodeficiency virus (HIV). Yet, to date, no single volume has ever sought to systematically organize, synthesize, and contextualize this enormous body of information for a general readership. The Encyclopedia of AIDS: A Social, Political, Cultural, and Scientific Record of the HIV Epidemic is the first reference work to undertake such a task by covering all major aspects of the global HIV/AIDS crisis.


Structure of the Encyclopedia of AIDS

The enormity and complexity of the ongoing HIV/AIDS epidemic is such that this work might have been 10 volumes rather than one and included 2,500 entries rather than the roughly 250 it contains. Inevitably, however, even the most extensive and exhaustive reference work would be outdated to some degree as soon as it was published, given the rapidly changing state of scientific knowledge as well as new developments in the social, political, and cultural dimensions of the epidemic.

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Thus, the construction of the Encyclopedia of AIDS posed several challenges: to cover a topic of extraordinary magnitude within the bounds of a ready-reference, single-volume format; to render extremely complex subjects accessible to a wide range of readers while avoiding oversimplication; and to produce a volume that would continue to be of value for several years after its initial publication. To meet these challenges, the Encyclopedia of AIDS approaches the first 15 years of the AIDS epidemic as a historical phenomenon unto itself, the broad profiles of which can be captured even if all its details cannot be spelled out in such a limited space. Recognizing that cutting-edge information about HIV/AIDS will forever be a moving target better left to periodicals and on-line resources, the Encyclopedia focuses instead on providing a record of the first 15 years of the epidemic.

In keeping with this approach, the Encyclopedia takes as its starting point the summer of 1981, when the first cases of unexplained immune deficiency began to be identified among a handful of gay men in the United States. The Encyclopedia continues its coverage through the summer of 1996, when the class of potent antiviral medications called protease inhibitors entered public consciousness, raising the first real hopes that HIV might someday be defeated. While the AIDS epidemic was influenced by many events prior to the summer of 1981 and the summer of 1996 by no means signalled the epidemic's end, these two events represent major historical markers. Of course, many precedents from prior to the summer of 1981 are also discussed, some stretching back decades or centuries. Likewise, a significant number of entries cover developments which occurred in 1997. In addition, dozens of historical photos and illustrations are included, most drawn from the period 1981-1996.


Using the Encyclopedia of AIDS

As a general reference work, the Encyclopedia of AIDS is intended to be a first step for general readers seeking information about HIV/AIDS as well as for specialists wishing to learn more about topics outside their areas of expertise. For those seeking information beyond what is offered in any individual article, each entry includes a list of Related Entries within the Encyclopedia, Key Words for use in on-line searches, and suggestions for English-language Further Reading. At the front of the Encyclopedia, a Resource Guide provides lists of periodicals, Internet sites, organizations, and other sources of information for readers who wish to update the information contained in the entries. Additional materials include an alphabetical list of all entries and a List of Commonly Used Terms and Abbreviations.

The contents of the Encyclopedia of AIDS can be organized into eight broad domains: Basic Science and Epidemiology; Transmission and Prevention; Pathology and Treatment; Impacted Populations; Government and Activism; Policy and Law; Culture and Society; and the Global Epidemic. The Overview provides a synopsis of the key facts in each domain, an explanation of the manner in which that domain is covered in the Encyclopedia, and a list of all relevant entries.

The 250 entries in the main body of the Encyclopedia are listed alphabetically. The headings of entries generally were chosen to reflect the word or words that general readers would be most likely to look up and also to afford as much symmetry as possible with related entries. Nonetheless, many subjects are not covered under their own headings but rather as part of larger entries; thus, readers are strongly encouraged to make maximum use of the Index at the back of the Encyclopedia.


Contributors

The 250 entries have been written by 181 contributors from more than a dozen countries on five continents. Collectively, the contributors represent many of the finest research institutes, colleges and universities, government agencies, community-based organizations, activist groups, and other institutions involved with combatting the HIV/AIDS epidemic. Information on all contributors is offered in the Notes on Advisers and Contributors. Each entry also includes the name(s) of its author(s). Co-authors have their names linked by the word "and." A secondary author who contributed a significant but limited portion of a larger entry is noted as having written the entry "with" the primary author(s). While most co-authorships were initiated by the contributors during the writing stage, some were initiated by the editors when the most efficient use of limited space required that closely related entries be merged. Thus, co-authorship of an entry does not necessarily imply a working relationship or a mutual endorsement between the co-authors.

In order for the Encyclopedia of AIDS to emerge as a single, coherent entity that would be of maximum use to readers, all contributors were asked to write their entries from the perspective of the "mainstream consensus" that has emerged over the last 15 years regarding the causes and nature of the AIDS epidemic. While it is difficult to quantify precisely this mainstream consensus, its cornerstone is that HIV is a naturally occurring (rather than human-made) virus and that HIV is the principal cause of AIDS (although certain co-factors may exist). Well into the second decade of the epidemic, some scientists and others continue to question the extraordinary volume of evidence that supports this mainstream consensus. While such dissention can play a useful role in the construction of scientific knowledge, it was nonetheless felt that as a general reference work, this volume should reflect the facts about HIV/AIDS as most commonly agreed upon throughout the world. Contributors were asked to note when certain facts are generally considered to be speculative or conjectural within the mainstream consensus.

Similarly, authors were also asked to avoid writing entries that indulge in polemics or advocate one point of view to the exclusion of all others. Although contributors were asked to approach their entries from within the bounds of scholarly objectivity, most entries nonetheless do, to some degree, reflect the disciplinary, theoretical, and ideological perspectives of their authors. It should also be noted that the source materials used to prepare the entries vary from entry to entry. Rather than require contributors to adhere to a single source of information, they were left to rely upon their own experience and professional expertise to determine the most reliable and appropriate source of information for their specific articles. Consequently, there may be small discrepancies in certain points of information in different entries.


Editorial Policy

In the face of severe space constraints, a number of difficult decisions about editorial policy had to be made about the way in which individuals, institutions, and countries would be covered. Thousands of people have played important roles in various aspects of the AIDS epidemic, enough so that an entire volume could easily be consumed with biographical entries alone. Yet there are no clear rules to follow in determining whom to include in separate entries and whom to exclude. Therefore, it reluctantly was decided that there would be no biographical entries, but that the names of prominent people would be allowed to emerge within the context of other entries. In addition, several articles are devoted to categories of individuals, such as "Artists and Entertainers" and "Politicians and Policymakers." Much the same is the case for organizations and institutions, which do not as a rule have specific entries assigned to them but rather are discussed in the context of other entries or in entries devoted to categories such as "Professional Organizations" and "Service and Advocacy Organizations." Similarly, most countries are profiled within the context of their world regions rather than on a nation-by-nation basis. (The Overview section on "The Global Epidemic" includes a list of the world regions and the countries listed in each.)

Ultimately, the contents of the Encyclopedia were shaped not only by deliberate design and by the limitations of space, but also by idiosyncracies of the editorial process. No claim is made that the organization or weighting of materials in this volume is the only, or even the single best, possible way in which the vast store of information about HIV/AIDS could be organized. Indeed, it will always be possible to argue that one or another topic should have been covered in greater depth or from a different perspective, or to ask why one topic was included and another not included. On a topic as important and politically charged as HIV/AIDS, fair-minded people can and do disagree on a multitude of issues. Nonetheless, we believe that all of the most crucial dimensions of the HIV/AIDS epidemic between 1981 and 1996 have been touched upon.

Readers are encouraged to send reaction to this volume and suggestions for possible future editions to:

Raymond A. Smith
Editor, Encyclopedia of AIDS
Fitzroy Dearborn Publishers
70 East Walton Street
Chicago, IL 60611


Acknowledgements

The three-year task of editing a work of this magnitude on a subject of such importance has been a privilege as well as a challenge, at turns both fascinating and humbling. This encyclopedia would not have been possible without the dedicated work of hundreds of individuals, first and foremost the 181 authors of entries. The editor wishes in particular to gratefully acknowledge Consulting Editor Joyce Hunter for helping to conceptualize the work as a whole and to identify many potential contributors; Consulting Editor Paul Volberding for assisting with the planning of the scientific topics to be covered; Picture Editor Jane Rosett for selecting and reproducing images from her own photo archive; Contributing Editor Tim Horn for reviewing and editing completed entries, primarily on treatment and basic science; Contributing Editor Richard Loftus for developing the initial list of scientific entries and assigning a number of entries to authors; Contributing Editor Douglas D'Andrea for reviewing and editing completed entries, primarily on pathology and basic science; Editorial Assistant Elizabeth Reich for helping to prepare the manuscript for publication; Copyeditor Lilia Kulas for line-by-line review and formatting of the text; Sonia Park, David Pratt, and Judy Parker for additional copyediting; the management and staff of Fitzroy Dearborn Publishers, in particular Commissioning Editor Carol Burwash and Publisher and President George Walsh, for guiding the book through publication; and Ingrid Nyeboe of Print Means, Inc., for typesetting and design. More generally, the editor also wishes to thank his colleagues at the HIV Center for Clinical and Behavioral Studies and at Columbia University, as well as his family and friends, for their support, encouragement, and advice throughout this long project.

Raymond A. Smith
New York, March 1998


The Encyclopedia of AIDS: A Social, Political, Cultural, and Scientific Record of the HIV Epidemic, Raymond A. Smith, Editor. Copyright © 1998, Raymond A. Smith. Carried by permission of Fitzroy Dearborn Publishers.

Encyclopedia of AIDS $25 US/832 pp/Illustrated

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