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1 Introduction The past four decades have witnessed unprecedented success in controlling infectious diseases, an achievement that has created great confidence in medicine's ability to conquer sickness. Yet in only a few years, the epidemic of human immunodeficiency virus (HIV) and ac- quired immune deficiency syndrome (AIDS) has shaken this confidence and revived fears at least as old as the medieval plagues. Indeed, the plagues and more recent pestilences offer parallels to the AIDS epidemic that may provide some useful lessons. Bubonic plague, a bacterial disease spread by rats and fleas, caused a succession of epidemics throughout Europe between the fourteenth and eighteenth centuries. The worst of these, called the Black Death, wiped out at least one-quarter of the population of Europe (Gottfried, 1983; Zuger and Miles, 19871. Accounts of the period describe a society grappling with many of the same questions AIDS has provoked: tensions between individual liberties and the public good, the responsibilities of physicians toward their patients, and the attribution of moral meaning to biological phenomena. In a period closer to our own, the first decades of the twentieth century offer syphilis as an example of an epidemic disease with features similar to those of AIDS, the control of which raised similar questions. As Brandt (1987) has noted, the parallels in this instance are particularly striking: they relate to science, public health, and social values. The limitations in our knowledge of AIDS and HIV infection and the epidemic's lack of amenability thus far to a purely technological solution 27
28 CONFRONTING AIDS: UPDATE 1988 mirror medicine's experience with syphilis. Paul Ehrlich discovered a treatment for syphilis salvarsan that he hoped would be the first of an arsenal of "magic bullets," drugs that would seek out and destroy particular diseases. Yet even penicillin, a more effective cure, has not eradicated the disease. When penicillin was introduced in 1943, the incidence of syphilis was 72 cases per 100,000 people; by 1956, it had fallen to about 4 per 100,000. By 1987, however, the incidence had risen to 15 cases per 100,000 and continues to rise (CDC, 1988a). Public health measures present another area for comparisons between the two epidemics. The public health response to syphilis in the early years of this century included what are by now familiar components: educational programs (those of the Victorian era unabashedly stressed chastity as contrasted with "safer sex") and screening and testing for infection. Public health measures to combat syphilis also comprised a dramatic campaign to close red-light districts. A crackdown in the districts during World War I resulted in the jailing of more than 30,000 prostitutes, but this program of detention and isolation had no impact on rates of venereal disease, which increased dramatically during the war. Perhaps the strongest parallel between AIDS and syphilis is that they are both sexually transmitted diseases, a characteristic that often brings social values forcefully into play. The reality of sexually transmitted diseases threatened the strong Victorian values of discipline and restraint and the social sanction of sex only within marriage. Among other manifestations of opprobrium, in those times as in our own, there arose a distinction predicated on how the infection was obtained, a distinction between "innocent" victims of disease (children and unknowing family members) and others who, according to prevailing moral values, were less deserving of sympathy and medical support (Brandt, 19871. The similarities between the AIDS epidemic of the present and epidem- ics of the recent past illustrate that each major epidemic of a fatal infectious disease is not unique in human history but nevertheless is an unusual event in its own time. Polio and smallpox are more recent examples of feared and calamitous epidemics that were eventually controlled by the advent of a vaccine; in the case of smallpox, a worldwide eradication effort was also necessary. There are important differences between AIDS and past epidemics, however, and between AIDS and other diseases of our time that also exact a heavy human toll. As the committee assessed problems and potential solutions in the areas of public health, health care, research, and national leadership, a recur- ring question emerged: Should extraordinary measures be taken in response to the AIDS epidemic and all its ramifications, given the magnitude and dimensions of other afflictions such as heart disease and cancer?
INTRODUCTION 29 The committee believes that AIDS is a special case among current diseases. Its characteristics define a unique pattern; although it shares particular features with other diseases, no one disease, past or present, encompasses all the challenges posed by AIDS. AIDS is an infectious, fatal disease for which there is now no cure. All infected persons appear to remain infectious, both during the long asymptomatic incubation period of HIV infection and during sympto- matic disease. This protracted infectiousness is unusual in the history of infectious diseases. The primary sufferers of AIDS come from what is ordinarily a healthy and productive population group: young adults. The Centers for Disease Control (CDC) calculate premature mortality in the United States according to total years of potential life lost before age 65. Against a backdrop of overall decline in years of potential life lost, AIDS has moved from 13th in 1984 to the 8th leading cause of premature mortality in 1986 (CDC, 1988b). The absolute mortality caused by AIDS to date may be exceeded by other major diseases, but the steep slope of its rise and the youth of its victims are unmatched. Because AIDS first occurred in the United States among already stigmatized groups homosexual and bisexual men and intravenous (IV) drug abusers the social response to it has been complicated by moral- istic assignments of blame for vulnerability to the disease, much as in earlier days when plague was seen as divine retribution. The persistent fear of casual transmission, in the face of mounting evidence to the contrary, is reminiscent of theories that syphilis was transmitted by toilet seats, pens, and doorknobs, beliefs that lingered well past the time when scientific evidence had proven them groundless. These social construc- tions of disease, and the fertile ground they provide for restrictive or discriminatory social responses, also set AIDS apart as a matter for special concern. The way in which traditional public health responses are complicated by these features of AIDS is discussed in Chapter 4. There are other aspects of the AIDS epidemic that set it apart. A disproportionate burden in the care of AIDS patients falls on certain geographic locations where the prevalence of infection is high. In fact, the AIDS epidemic is really a series of discrete epidemics in particular population subgroups in particular places. Society was unprepared for the numbers of patients generated by infection with HIV. Furthermore, the AIDS caseload began to mushroom at a time when hospital beds were being eliminated. If a business-as-usual approach is taken, one conse- quence of the epidemic may be the decline of hospitals and health care systems in high-prevalence areas. (This aspect of the epidemic is dis- cussed in Chapter 5.) The fundamental uncertainty about the epidem- ic's future course (see Chapter 3), in contrast to other conditions such as heart disease or cancer for which the burden of illness is more predict-
30 CONFRONTING AIDS: UPDATE 1988 able, lends urgency to the need for attention. In addition, the international spread of the disease brings special responsibilities to the United States (see Chapter 7) because of our exceptional resources in public health and biomedical personnel, the large numbers of infected persons in the United States, and our relative affluence. A further compelling argument for now focusing special attention on AIDS is that future HIV infections are preventable by modifying the behavior that brings individuals into contact with the virus. IV drug abuse and sexual behavior may be both biologically and socially based and are not always voluntary in the simplest sense. Yet the potential exists for their modification through education, counseling, and treatment. In addition, increasingly detailed epidemiological knowledge about the modes of spread of the disease constitutes a firm foundation of data on which to construct public health programs responsive to the precise contours of the epidemic (Osborn, 19884. We may be in the midst of a disaster, but we also have the means to avert future devastation. Whenever a system is brought into play to cope with AIDS be it a social, biomedical research, or medical care systemits deficiencies are exposed. (A few examples are the financing of care, the organization of medical services, foster care, the availability of drug abuse treatment, and the coordination of research efforts.) Once AIDS is considered a special case, however, a broader range of solutions to the problems posed by the AIDS crisis opens up. There are three viable categories of approaches: (1) strengthening programs within the context of existing systems; (2) devel- oping new schemes that resolve general problems brought into focus by AIDS; and (3) formulating AIDS-specific solutions (this kind of specific response is often fragmented from the system as a whole, but its advantage is that it can be quickly deployed to respond to an emergency). With these approaches in mind, the committee has tried to lay out a number of options in making recommendations for further action against the AIDS epidemic. The committee is aware of the possible dangers in granting any one disease special status in particular, that attention and resources might be diverted from other important conditions. In shaping its recommenda- tions, the committee took particular care to advise against such diversion. Furthermore, just as the results of our experience with other diseases (e.g., cancer) have equipped us to address the challenge of HIV infection and AIDS, so will solutions to the AIDS crisis produce benefits in diverse and possibly unforeseen areas that may well be applicable to other illnesses. These areas include basic science, drug and vaccine develop- ment, the financing of health care, alternative health care settings, knowledge of human behavior, relationships between health care provid- ers and patients, drug abuse prevention and treatment, and compassion-
INTRODUCTION 3 1 ate treatment of the sick and disabled. Rather than overshadowing efforts in other fields, considering AIDS a special case may illuminate new directions in the management of other illnesses. REFERENCES Brandt, A. M. 1987. No Magic Bullet: A Social History of Venereal Disease in the United States Since 1880. New York: Oxford University Press. CDC (Centers for Disease Control). 1988a. Continuing increase in infectious syphilis- United States. Morbid. Mortal. Wkly. Rep. 37:35-38. CDC. 1988b. Quarterly report to the Domestic Policy Council on the prevalence and rate of spread of HIV and AIDS in the United States. Morbid. Mortal. Wkly. Rep. 37:223-226. Gottfried, R. S. 1983. The Black Death. New York: Free Press. Osborn, J. 1988. AIDS: Politics and science. N. Engl. J. Med. 318:444-447. Zuger, A., and S. H. Miles. 1987. Physicians, AIDS, and occupational risk. Historic traditions and ethical obligations. J. Am. Med. Assoc. 258:1924-1928.