The epidemic of AIDS has spawned a parallel epidemic of public concern and confusion. While scientists have learned a wealth of facts about acquired immune deficiency syndrome and the virus that causes it, the public's response has not always appeared to be based on what is actually known. Instead, people often react emotionally.
Likewise, the decisions of our public policymakers sometimes appear to be based more on political and ideological perspectives than on scientific principles.
AIDS may be the most difficult test imaginable for our information-based society. Is it possible to disseminate complex and highly technical information to the broad array of people interested in the subject? Can there be a common ground of understanding of so difficult an issue in a nation whose citizens have diverse backgrounds and educations? In the coming months and years, these questions will begin to be answered.
For now, in response to the public's increasing interest in AIDS, publishers are coming forth with a host of books of varying quality. The books reviewed here represent a spectrum of topics on AIDS of interest to the public and are generally available in bookstores or can readily be ordered.
The Truth About AIDS: Evolution of an Epidemic, by Ann Giudici Fettner and William Check. (Holt, Rinehart and Winston, 1985. 306 pp., $8.95).
This volume is one of the more interesting accounts of the early years of the AIDS epidemic. The authors recount the happenings beginning with the first reports of unusual diseases in otherwise healthy young men. Events are detailed in a way that leads the reader to become engrossed in the mystery of the time even though the outcome of the story -- so far, at least -- is known.
The arguments over public health measures to combat AIDS, controversy over who actually discovered the virus, criticism of government funding and discussion of the role of homophobia -- prejudice toward and fear of homosexuals -- are all discussed.
The unfortunate aspect of this book (and of others, as will be noted) is a lack of documentation of sources, which detracts from the obvious extensive work that went into this volume's preparation. There are multitudes of quotations from individuals involved in all aspects of the AIDS crisis, but when and where the statements were made is largely uncertain. This may not be of much concern to the casual reader, but the more detail-oriented reader will be dismayed by this.
For example, this book says that about 80 percent of American gays use "poppers" -- readily available nitrite inhalants -- as a recreational drug. Because studies involving a true cross-section of American gays are nonexistent, it is difficult to imagine any valid source for such a declaration.
The book is not always well-balanced in presenting viewpoints. In a discussion of the immune system and the effects of stress, the authors conclude with a statement from a psychologist who "states firmly that all of the men with AIDS he has counseled have a recent history of unresolved, stressful situations prior to the development of the illness." This is a very weak argument for an AIDS-stress connection, when one realizes that there are few people who could not be described as having a recent history of unresolved stressful situations in their lives.
From the standpoint of style, the book is well written, with an attention to detail that makes events come alive. One can vividly picture Health and Human Services Secretary Margaret Heckler's April, 1984 press conference announcing -- in an atmosphere of disorder, haste and controversy -- that the cause of AIDS had been found.
Often, though, the book has a gossipy feel, such as when it reports a totally unconfirmed -- and irrelevant -- rumor that Haiti's ex-dictator Duvalier is gay. The passage of time since this book was written diminishes its value as an up-to-date record of the AIDS crisis; however, as a history of the early days it remains interesting.
Mobilizing Against AIDS: The Unfinished Story of a Virus, Institute of Medicine, National Academy of Sciences (Eve K. Nichols, writer). (Harvard University Press, 1986. 212 pp., $7.95).
This publication is based on presentations at the annual meeting of the Institute of Medicine in October of 1985. Like "The Truth About AIDS," it is clearly written and easy to read. It covers many of the same issues that Fettner and Check did but more succinctly and without the interest added by the extensive personal interviews and quotations.
Information is combined from various presentations at the institute into chapters that somewhat blandly trace the epidemic, discuss the intricacies of the AIDS virus and the functioning of the immune system, prevention and treatment of AIDS, and issues regarding the psychological and social effects of AIDS. There is only a brief bibliography, which is disappointing.
The volume may annoy some in its persistent avoidance of the use of the terms "gay men and lesbians" except in quotations. Some will likely view this as the "establishment's" lack of sensitivity to minority concerns, just as use of the word "Negro" rather than "black" would be construed today.
Over all, the volume lacks depth in its analysis of events. Complex controversies tend to be oversimplified, as in: "Some people believe that it is inappropriate for government agencies to tell homosexuals how to have 'safe sex' . . . Others feel that the gravity of the situation warrants such measures."
The reader is faced with accepting on faith that the facts presented are true. For example, it is stated that "an analysis by the New York Department of Health found that the average survival time for patients whose diagnosis of AIDS was based on p. carinii pneumonia alone was 35 weeks." We don't know when the analysis was done, nor do we have any idea what treatment was given. The reader is left wondering if this statistic is still true in light of current treatments.
Sometimes, the brevity could result in misunderstanding. A section on transmission of the virus says that everyone should know the infection status of his or her sexual partners but does not mention that one cannot rely on antibody testing to disclose recently acquired infections.
AIDS: Facts and Issues, edited by Victor Gong and Norman Rudnick. (Rutgers University Press, 1986. 388 pp., $25 cloth, $10.95 paper).
A promotion for the book describes it as "an essential resource for individuals, clinics, referral centers, libraries, student health centers, public health and civic officials, parents, teachers and health care professionals." In this attempt to provide something for everyone, the editors have engaged the efforts of 31 authors in 25 chapters. The range of topics is extensive. There are chapters on such diverse subjects as clinical, ethical, legal, psychological, spiritual and economic issues.
As in many compilation volumes, the quality of the chapters ranges from excellent to mediocre. Unfortunately, this volume has been stricken by the same anti-documentation plague that troubles other volumes, though there are reference lists at the end of each chapter. In a few instances, information is simply confusing. For example, one paragraph discussing the percentages of AIDS virus-infected individuals who will go on to develop symptoms or actual AIDS gives conflicting or perplexing data. Trying to make sense out of the numbers is exasperating.
Some statements are contradictory or factually incorrect. One chapter refers to a common skin cancer of AIDS patients -- Kaposi's sarcoma -- being found only in homosexual men, and another mentions that it appears in infants. In another place, a drug used in the treatment of a particular AIDS-related pneumonia is said to be most often injected into muscle tissue, while elsewhere it is stated that this drug is usually administered intravenously.
In spite of these shortcomings, there is much in the volume that is helpful. There is a chapter on the immunology of AIDS that should be understandable to the average reader, a difficult task given the complexity of the subject. There are extensive sections dealing with society's response to AIDS. Chapters such as those on ethics, economics, legal issues, spiritual issues, dying and mental health discuss important subjects. These sections are the book's strong points and distinguish it from the other volumes being reviewed. It also contains the most comprehensive and useful directory of AIDS organizations and resources.
AIDS in the Mind of America, by Dennis Altman (Anchor Press/Doubleday, 1986. 228 pp., $16.95 hardcover, $8.95 paper).
Altman looks at the AIDS crisis from a perspective that analyzes human and institutional reactions to this major health crisis. For example, he follows the media coverage from the early days of the AIDS crisis with the sensational headlines of "Gay Plague" or, in the case of a Long Island grandmother, "Gay Bug Kills Gran," to the more responsible reporting that was to follow. He discusses The New York Times' refusal to use the word "gay" in most instances and the Southern Medical Journal's unfortunate editorializing: "Might we be witnessing, in fact, in the form of a modern communicable disorder, a fulfillment of St. Paul's pronouncement: 'the due penalty of their error'?"
Such examples are used by the author to describe the complex intervening forces that fuel and explain the continuing response to AIDS.
Altman's unique contribution is his ability to present a view that springs from his own cultural background as a gay man. Just as many of us may be awakened to new insights by cross-cultural contact, so this volume assists in understanding the attitudes, frustrations and perspectives of many gay men and lesbians toward societal institutions such as religion, government and medicine. It will be easier for many readers to understand the symbolic role that sexuality had come to play in the lives of gay men and the difficulty of making behaviorial changes when the symbolic meaning of sexuality suddenly changed. Once a symbol of freedom and individuality, sex began to take on the overtones of death.
It would be a mistake, however, to regard this as a book solely for gays. It is a perceptive analysis of the various players in the AIDS crisis. The author attempts to give the reader some insight into the reasons that the heterosexual aspect of this disease is frequently played down and how various groups have been affected by the AIDS epidemic. Though not fully developed, there is an effort also to contrast the response of different nations to the AIDS epidemic.
The book is not perfect. It focuses primarily on understanding and analyzing problems and fails to give much insight into many of the positive responses of institutions and individuals. Certain premises are overstated, such as: "From the very early days of the epidemic, it was clear that transmission could not occur through mere casual contact . . ." That is clear now, but it wasn't clear at the outset.
Despite such shortcomings, this book is both interesting reading and more scholarly than most of the AIDS books reviewed here.
The Plague Years: A Chronicle of AIDS, The Epidemic of Our Times, by David Black (Simon and Schuster, 1986. 224 pp., $16.95).
Here the reader finds a behind-the-scenes look at various aspects of the AIDS crisis. Based on personal interviews and obvious familiarity with the events of the AIDS years, the author explores attitudes and motivations of many of the individuals and organizations that were significant in the response to the epidemic. He personalizes the account with his own reactions to many aspects of the AIDS story.
Most notable about this volume is the author's style. He appears to be the rebellious adolescent whose goal is to shock and provoke the reader. It seems doubtful that there could be a reader who will not find something offensive in this book. He describes sensational events from the Sixth Lesbian/Gay Health Conference and ignores the conventional. If a word or phrase can be translated from medical jargon to street language, the author seemingly delights.
Balance is not one of the author's strong points. He describes compulsive sexuality: "The brain's pleasure centers are used to being stimulated; like rabid hyenas, they howl and gnash their synaptical teeth when they are not fed." Such ongoing intensely dramatic descriptions of the turmoil experienced by some individuals are not contrasted with descriptions of the reasoned and relatively calm adjustments made by many people. Nor does his discussion of compulsive sexuality, which focuses primarily on gay men, make it clear that many gay individuals have never been involved in compulsive sex or "at risk" behavior.
Some may perceive the author's focus on sensational aspects of the gay world as homophobic, but, by the end of the book, the author has depicted many of the characters (including himself) in unflattering terms. For example, he describes a researcher as having ". . . a flat face and squashed nose that made it look as if he were pressed up against a glass wall, trying to see what was on the other side." Another researcher is portrayed: "He wore aviator glasses, a Hollywood touch; and his hair was rumpled, but just enough to make it look as if he had recently emerged from handling a crisis. His manner seemed condescending, as though he were The Keeper of Secrets obliged to deal with a world of lesser mortals."
His writing displays the nothing-is-sacred bite of Joan Rivers without the humor. Yet in doing this, the author gets to the heart of issues in gay organizations, the CDC, medical centers and elsewhere. His irreverence prohibits readers from ignoring their own feelings. To the extent that his literary flamboyance provokes thoughtfulness, it succeeds. To the extent that it trivializes and sensationalizes AIDS, it fails.
Confronting AIDS: Directions for Public Health, Health Care, and Research, Institute of Medicine, National Academy of Sciences. (National Academy Press, 1986. 374 pp., $24.95).
"Confronting AIDS" is a remarkably sound document with a different slant on the AIDS crisis from the others. This comprehensive exploration of issues ranging from health care of persons infected with HIV to international aspects of AIDS was developed under the auspices of the Institute of Medicine, a branch of the National Academy of Sciences (NAS). It is much more technical than the earlier NAS overview, "Mobilizing Against AIDS."
While the book explains the medical signs of human immunodeficiency virus (HIV) infection and how the virus is transmitted, its focus is more on what can and should be done to cope with the epidemic. It is in this area that the book excels. The report was developed from highly distinguished groups of scientists and individuals with expertise in areas ranging from molecular biology to economics.
Clearly evident is the enormity of the situation AIDS poses for society. Public Health Service projections of a cumulative total of more than 270,000 cases of AIDS in the United States by 1991 and estimates of health care costs of $8 billion to $16 billion in 1991 alone are examples of the kind of data analyzed. Approaches to education are discussed with sensitivity to often ignored issues, for example that members of "risk groups" are themselves diverse and must be reached in various ways. Issues such as mandatory antibody testing are discussed with a view toward the wide range of consequences of such action, including psychological effects. Well-reasoned paragraphs lead to the conclusion that mandatory screening of the entire population or population subgroups should be opposed.
The book's careful attention to detail is exemplified in a discussion of the actual number of chimpanzees available for research in the United States and the consequences of this small number.
The book calls for greatly increased spending on AIDS research and education and urges the government to take a significantly more active role, although it often couches those criticisms in soft language. Indeed, readers may find language in some portions of the book technical and obscure. This is most evident in a discussion of the structure of the AIDS virus. However, most of the text is clearly written.
For readers who wish to understand the complex issues and solutions involved in stopping this epidemic, this study is superb. As the public debate over issues such as mandatory antibody testing heats up, this book should be mandatory reading for any person in a position to develop public policy on AIDS.James Krajeski, MD, a San Francisco psychiatrist, is a member of the California Psychiatric Association Task Force on AIDS. The first five reviews were adapted from American Medical News.