|AIDS:The Burdens of History|
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Despite the philosopher George Santayana's famous injunction that those who do not remember the past are condemned to repeat it, history holds no simple truths. Nevertheless, there are a number of significant historical questions relating to the AIDS epidemic. What does the history of medicine and public health have to tell us about contemporary approaches to the dilemmas raised by AIDS? Is AIDS something totally new, or are there instances in the past that are usefully comparable? Are there some lessons in the way science and society have responded to epidemic disease in the past that could inform our understanding of and response to the current health crisis?
There are obviously no simple answers to such questions. History is not a fable with the moral spelled out at the end. Even if we could agree on a particular construction of past events, it would not necessarily lead to consensus on what is to be done. Yet history provides us with one means of approaching the present. In this regard, the history of responses to particular diseases can inform and deepen our understanding of the AIDS crisis and the medical, social, and public health interventions available.
The way a society responds to problems of disease reveals its deepest cultural, social, and moral values. These core valuespatterns of judgment about what is good or badshape and guide human perception and action. This, we know, has most certainly been the case with AIDS; the epidemic has been shaped not only by powerful biological forces, but by behavioral, social, and cultural factors as well. This essay ana-
lyzes the process by which social and cultural forces affect our understanding of diseasethe "social construction of disease"and examines several analogues to the current health crisis. But disease is more than a metaphor. These "social constructions" are more than merely metaphors. They have very real sociopolitical implications.
An examination of the first decades of the twentieth centurya time of intense concern and interest in sexually transmitted diseases not unlike those todaymay demonstrate how this process has worked. Indeed, the first two decades of the twentieth century witnessed a general hysteria about venereal infections. The historical analogues are striking; they relate to public health, science, and, especially, social and cultural values.
This period, often referred to as the Progressive era, combined two powerful strains in American social thought: the search for new technical, scientific answers to social problems, and the search for a set of unified moral ideals. The problem of sexually transmitted diseases (STDs) appealed to both sets of interests. The campaign against these infectionsthe "social hygiene" movementwas predicated on a series of major scientific breakthroughs. The specific organism that causes gonorrhea, the gonococcus bacterium, and the causative agent for syphilis, the spirochete, were identified. By the end of the first decade of the twentieth century diagnostic exams had been established. In 1910 German Nobel laureate Paul Ehrlich discovered the first major chemotherapy effective against the spirochetesalvasan. Science thus had the effect of reframing the way in which these diseases were seen.
The enormous social, cultural, and economic costs of venereal disease were revealed when doctors defined what they called "venereal insontium," or venereal disease of the innocent. In the early twentieth century physicians traced the tragic repercussions of syphilis within the family. Perhaps the best-known example of venereal insontium is ophthalmia neonatorum, gonorrheal blindness of the newborn, and as late as 1910 as many as 25 percent of all the blind in the United States had lost their sight in this way, despite the earlier discovery that silver nitrate solution could prevent infection. Soon many states began to require the use of this prophylactic treatment by law.
But doctors stressed the impact of venereal disease on women even
more than on children. In 1906 the American Medical Association (AMA) held a symposium on "The Duty of the Profession to Womanhood." As one physician at the conference explained:
These vipers of venery which are called clap and pox, lurking as they often do, under the floral tributes of the honeymoon, may so inhibit conception or blight its products that motherhood becomes either an utter impossibility or a veritable curse. The ban placed by venereal disease on fetal life outrivals the criminal interference with the products of conception as a cause of race suicide.
Family tragedy was a frequent cultural theme in these years. In 1913 a hit Broadway play by French playwright Eugene Brieux, Damaged Goods , told the story of young George Dupont, who, although warned by his physician not to marry because he has syphilis, disregards this advice only to spread the infection to his wife and, later, to their child. This story was told and retold, revealing deep cultural values about science, social responsibility, and the limited ability of medicine to cure the moral ailments of humankind.
But physicians expressed concerns that went beyond the confines of the family; they also examined the wider social repercussions of sexually transmitted diseases. The turn of the century witnessed the most intensive periods of immigration to the United States in its entire history; more than 650,000 immigrants came to these shores each year between 1885 and 1910. Many doctors and social critics suggested that these individuals were bringing venereal disease into the country. As Howard Kelly, a leading gynecologist at the Johns Hopkins School of Medicine, explained: "The tide [of venereal disease] has been raising [sic] owing to the inpouring of a large foreign population with lower ideals." Kelly elaborated, warning: "Think of these countless currents flowing daily from the houses of the poorest into those of the richest, and forming a sort of civic circulatory system expressive of the body politic, a circulation which continually tends to equalize the distribution of morality and disease."
Examinations at ports of entry failed to reveal a high incidence of disease; nevertheless, nativists called for the restriction of immigration. How were these immigrants thought to be spreading sexually transmitted diseases to native, middle-class, Anglo-Saxon Americans? First, it was suggested that immigrants constituted the great bulk of the prostitutes inhabiting American cities; virtually every major American metropolis of the early twentieth century had clearly defined red-light dis-
tricts where prostitution flourished. These women, it was suggested, were typically foreign-born.
But even more important, physicians asserted that syphilis and gonorrhea could be transmitted in any number of ways. Doctors catalogued the various modes of transmission: Pens, pencils, toothbrushes, towels and bedding, and medical procedures were all identified as potential means of communication. As one woman explained in an anonymous essay in 1912:
At first it was unbelievable. I knew of the disease only through newspaper advertisements [for patent medicines]. I had understood that it was the result of sin and that it originated and was contracted only in the underworld of the city. I felt sure that my friend was mistaken in diagnosis when he exclaimed, "Another tragedy of the common drinking cup!" I eagerly met his remark with the assurance that I did not use public drinking cups, that I had used my own cup for years. He led me to review my summer. After recalling a number of times when my thirst had forced me to go to the public fountain, I came at last to realize that what he had told me was true.
The doctor, of course, had diagnosed syphilis. One indication of how seriously these casual modes of transmission were taken is the fact that the U.S. Navy removed doorknobs from its battleships during World War I, claiming they had been a source of infection for many of its sailors (a breathtaking act of denial). We now know, of course, that syphilis and gonorrhea typically are not contracted in these ways. This poses a difficult historical problem: Why did physicians believe they could be?
Theories of casual transmission reflected deep cultural fears about disease and sexuality in the early twentieth century. In these approaches to venereal disease, concerns about hygiene, contamination, and contagion were expressed, anxieties that revealed a great deal about the contemporary society and culture. Venereal disease was viewed as a threat to the entire late Victorian social and sexual system, which placed great value on discipline, restraint, and homogeneity. The sexual code of this era held that only marital sex should receive social sanction. But the concerns about venereal disease also reflected a pervasive fear of the urban masses, the growth of the cities, and the changing nature of familial relationships. Finally, the distinction between venereal disease and venereal insontium had the effect of dividing victims; some deserved attention, sympathy, and medical support, others did not, depending on how the infection was obtained. Victims were separated into the innocent and the guilty.
In short, venereal disease became a metaphor for late Victorian anxieties about sexuality, contagion, and social organization. But these metaphors are not simply innocuous linguistic constructions. They have powerful sociopolitical implications, many of which have been remarkably persistent throughout the century.
Concerns about sexually transmitted diseases led to a major public health campaign to stop their spread. In fact, many of the public health approaches we apply today to communicable infections were developed early in this century. Educational programs formed a major component of the campaign, although to speak of education is far too vague. The question, of course, is the precise content of the education offered. During the first decades of the twentieth century, when schools first instituted sex-education programs, their basic goal was to encourage premarital continence by inculcating a fear of sex. Indeed, these programs could more accurately be termed "antisexual education."
The newly acquired ability to diagnose syphilis and gonorrhea led to the development of other important public health interventions. Reporting, screening, testing, and the isolation of carriers were all initiated in the early years of the twentieth century as venereal-disease-control measures, and American cities began to require the reporting of venereal diseases around 1915. Some states used reports to follow contacts and bring individuals in for treatment, and by the 1930s many had come to require premarital and prenatal screening. Some municipalities mandated compulsory screening of food-handlers and barbers, even though it was by then understood that syphilis and gonorrhea could not be spread through casual contact. The rationale offered was that these individuals were at risk for infection anyway and that screening might reveal new cases for treatment.
Perhaps the most dramatic public health intervention devised to combat sexually transmitted diseases was the campaign to close red-light districts. In the first two decades of the twentieth century, vice commissions in almost all American cities had identified prostitutes as a major risk for American health and morals, and decided that the time had come to remove the "sources of infection." Comparing the red-light districts to malaria-producing swamps, they attempted to "drain" them; during World War I more than a hundred red-light districts were closed.
The crackdown on prostitutes constituted the most concerted attack on civil liberties in the name of public health in American history. Not surprisingly, in the atmosphere of crisis engendered by the war, public
health officials employed radical techniques in their battle against venereal disease. State laws held that anyone "reasonably suspected" of harboring a venereal infection could be compulsorily tested, and prostitutes were now subject to quarantine, detention, and internment. United States Attorney General T. W. Gregory explained: "The constitutional right of the community, in the interest of the public health, to ascertain the existence of infections and communicable diseases in its midst and to isolate and quarantine such cases or take steps necessary to prevent the spread of disease is clear." In July 1918 Congress allocated more than $1 million for the detention and isolation of venereal carriers. During the war more than thirty thousand prostitutes were incarcerated in institutions supported by the federal government. As one federal official noted:
Conditions required the immediate isolation of as many venereally infected persons acting as spreaders of disease as could be quickly apprehended and quarantined. It was not a measure instituted for the punishment of prostitutes on account of infraction of the civil or moral law, but was strictly a public health measure to prevent the spread of dangerous, communicable diseases.
Fear of venereal disease during the war had led to substantial inroads against traditional civil liberties. Although many of these interventions were challenged in the courts, most were upheld; the police powers of the state were deemed sufficient to override any constitutional concerns. The program of detention and isolation, it should be noted, had no impact on rates of venereal disease, which increased dramatically during the war. Although this story is not well known, the parallels to the interment of Japanese Americans during World War II are unavoidable.
In light of the history of sexually transmitted diseases in the last century, it is almost impossible to watch the AIDS epidemic without a sense of dÃ©jÃ vu . AIDS raises a host of concerns traditional to the debates about venereal infection-from morality to medicine, sexuality and deviance, and prevention and intervention. In many instances the situation with AIDS is similar to that of syphilis in the early twentieth century, described in the previous chapter by Elizabeth Fee. Like syphilis then, AIDS can cause death; there is currently no curative treatment; it is being addressed in the meantime via education and social engineer-
ing; and it arouses fears that reveal deeper social and cultural anxieties about the disease, its transmissibility, and its victims. Yet AIDS is different, too.
AIDS threatens our sense of medical security. After all, the age of transmissible, lethal infections was deemed long past in the Western world. Ours was the age of chronic diseaseheart diseases and cancers that principally strike late in life; epidemics of infectious diseases had receded in the public memory. Not since the polio epidemics of the early 1950s has fear of infection reached such a high pitch as it has in the 1980s. Indeed, no epidemic since the swine flu pandemic of 1918 has had such a dramatic impact on patterns of mortality, and, ironically, the concerns in 1976 about a new epidemic of swine flu, which never materialized, seemed to confirm that fear of epidemic infection was unfounded in this modern age of antibiotics. AIDS has fractured this false sense of confidence. Effective responses to such a problem are further complicated by its "social construction," those attitudes and values that shape the public view of the disease. The social construction of AIDS will in turn have a powerful impact on the choices made in responding to the disease.
Though AIDS is an enormous public health problem, public perceptions of the epidemic have not always been accurate. Despite considerable evidence that AIDS is not easily communicated, widespread fears persist, reminiscent of the belief that syphilis could be transmitted by drinking cups, toilet seats, and doorknobs. Such late Victorian concerns are now cast in a contemporary light. In the fall of 1985 a New York Times /CBS poll found that 47 percent of Americans believed that AIDS could be transmitted via a shared drinking glass, while 28 percent believed that toilet seats could be the source of contamination. Another survey found that 34 percent of those polled believed it unsafe to "associate" with an AIDS victim even when no physical contact was involved. The California Association of Realtors instructed its members to inform prospective buyers whether or not a house on the market had been owned by an AIDS patient.
Because of the considerable fear the AIDS epidemic has engendered, and the fact that the disease has principally affected two already marginal social groups (gays and intravenous drug users), its victims have been further victimized by stigmatization and discrimination. AIDS pa-
tients have lost jobs, housing, and social support. At risk not just from a serious, terminal disease, AIDS sufferers also have to deal with a series of social perceptions and attitudes that encourage further discrimination and isolation. Even the medical profession has not been free from the fear of AIDS: Early in the epidemic some physicians refused to treat AIDS patients, despite assurances that the virus was not easily transmitted.
The hysteria and stigma have even led to attempts to segregate victims. The first major skirmish in this battle arose over whether children with AIDS should be permitted to attend school. Ryan White, a thirteen-year-old AIDS victim, was banned from his Indiana school. This issue has attracted a vehement, ongoing debate, but most jurisdictions have permitted children with the disease to attend when they posed no risk to other students. In Queens, New York, angry parents kept their children home in two school districts because a child with AIDS was permitted to go to school. The boycott reflected a pervasive mistrust of scientific authority, as well as a lack of understanding about the nature of uncertainty in science. Could officials assureabsolutelythat the disease could not be passed in the classroom? Medical science, which deals in probabilities, could not offer the definitive guarantees that many demanded.
Stigma goes beyond AIDS patients to anyone considered at risk of carrying the infection. Indeed, not only have AIDS patients been subject to discrimination, but the public response to the disease has also been accompanied by a rise in attacks on homosexuals. Fire officials have refused to resuscitate men they suspected might be homosexual, and police have worn gloves in apprehending suspects in some municipalities.
Our understanding of AIDS and its meaning has been powerfully shaped by the media in what has been a complex process. AIDS has generated outstanding science writing as well as scurrilous reports bent on raising irrational fears and public hysteria. The death of movie idol Rock Hudson in October 1985 demonstrates the paradoxical relationship of AIDS and the media. Hudson's death became the occasion for recognizing that AIDS was a vast problem that merited more attention; his death put a human face on the epidemic for many Americans. It also became the occasion for speculation about Hudson's sexuality and for a prurient interest in the gay subculture. Hudson's plight was heavy with irony. This macho screen star, the press now speculated, had lived a secret life. AIDS brought a pale, thin, dying Hudson out of the closet, and President Ronald Reagan finally uttered the dangerous monosyllable, "AIDS."
But Hudson's death also led to heightened fears of hidden disease.
Who knew who was gay? Who knew who might have the disease? Hudson's death created alarm among Hollywood actors that they might contract the disease in the course of making movies and television shows. Some critics suggested that Hudson had acted irresponsibly by not informing his fellow cast members of the television serial "Dynasty" and by kissing his costar, Linda Evans, in one episode. In this respect, Hudson's death again raised concerns that AIDS victims and those who carry the virus could place others at risk. Shortly after Hudson's death, his estate was sued by a lover, who claimed that Hudson had never informed him he had AIDS.
The fact that the two principal high-risk groups are already highly stigmatized in American society has had a powerful impact on responses to the epidemic. Some have seen the AIDS epidemic in a purely "moral" light: AIDS is a disease that occurs among those who violate the moral order. As one journalist concluded: "Suddenly a lot of people fear that they and their families might suddenly catch some mysterious, fatal illness which until now has been confined to society's social outcasts." AIDS, like other sexually transmitted diseases, has been viewed as a fateful link between social deviance and the morally correct. Such fears have been exacerbated by an expectant media. "No ONE IS SAFE FROM AIDS," announced Life magazine in bold red letters on its cover. Implicit was the notion that "no one is safe" from gays and intravenous drug users. The disease had come to be equated with those who are at highest risk of suffering its terrible consequences.
Underlying the fears of transmission were deeper concerns about homosexuality. Just as "innocent syphilis" in the first decades of the twentieth century was thought to bring the "respectable middle class" in contact with a deviant ethnic, working-class "sexual underworld," now AIDS threatened heterosexuals with homosexual contamination. In this context, homosexualitynot a viruscauses AIDS. Therefore, homosexuality itself is feared as if it were a communicable, lethal disease. After a generation of work to strike homosexuality from the psychiatric diagnostic manuals, it had suddenly reappeared as an infectious, terminal disease.
The AIDS epidemic thus offered new opportunities for expressions of moral opprobrium. Patrick Buchanan, conservative columnist and former Reagan speechwriter, explained, "The poor homosexualsthey have declared war upon Nature, and now Nature is exacting an awful retribution." Criticizing government expenditures on research to produce a vaccine, Commentary editor Norman Podhoretz asked: "Are
they aware that in the name of compassion they are giving social sanction to what can only be described as brutish degradation?" Podhoretz's positionthat gays get what they deserve, that to investigate treatments would merely encourage unhealthy behaviorsis a classic position in the history of sexually transmitted diseases. It also demonstrates a remarkably uninformed view of the epidemic, as well as a complete disregard for the public health.
In a now classic work, Stigma : Notes on the Management of Spoiled Identity , sociologist Erving Goffman defined what he considered to be three types of stigma. The first is an abomination of the body; clearly AIDS could be so categorized. The second is a blemish of individual character; again victims of AIDS and other sexually transmitted diseases have traditionally been seen as lacking control, as immoral and promiscuous. And third, Goffman identified the tribal stigmas of race, nation, or religion. This, too, has been a recurring theme in considerations of venereal diseasethe notion that particular groups were especially prone to infection. Perhaps the sexually transmitted diseases carry a particularly weighty stigma because they cut through each of these categories; an undesired difference , of a sexual nature, that sets its victims apart. Victims of AIDS thus suffer the biological consequences of a terrifying, fatal disease as well as a deep social stigma.
Fear of disease and the homophobia it has generated have forced the gay-rights movement into defensive action in order to fight a rising tide of discrimination. In fact, the epidemic threatens to undo a generation of progress toward gay rights. Not only does AIDS threaten the lives of many members of the gay community, it has unleashed a considerable political and legal threat. In June 1986 the Justice Department issued a decision that held it permissible for employers to bar AIDS patients or those infected with the virus from work. The ruling held that federal law did not protect the civil rights of those who might be considered dangerous to others; moreover, the ruling left the evaluation of such "real or perceived" risks to the employer. The decision was issued despite government scientists' repeated statements, on the basis of considerable epidemiological and biological evidence, that the disease was not casually transmitted.
Public health officials openly expressed their dismay with the ruling, which threatened to encourage the irrational fears of the disease that they had worked so diligently to alleviate. Calling the ruling a "license to hound AIDS victims," the New York Times wrote in an editorial that "no one should want to curb the powers of public health officials to control a disease as deadly as AIDS. But to throw AIDS victims out of their
jobs is a capitulation to unwarranted fear that protects no one." As journalist Charles Krauthammer noted, the ruling undercut all anti-discrimination legislation: "The whole point of such laws is to say this: It may indeed cause you psychological distress to mix with others who you irrationally dislike or fear. Too bad. The state has decided that these particular prejudices are destructive and irrational. Therefore the state will prohibit you . . . from acting upon your groundless prejudices." As Krauthammer concluded, "It should not matter if people think you can get AIDS in the Xerox room. You can't. Ignorance is a cause of discrimination. It is not a justification for it."
Such a ruling may not be upheld in court. But the courts have not supported recent attempts to provide basic civil liberties for homosexuals. Soon after the Justice Department ruling in 1986, the Supreme Court upheld, in a five to four decision, the constitutionality of a state's sodomy law in a case that was considered a major setback to the gay-rights movement. This ruling, which conflicted with the court's recent affirmations of the right to privacy, can be fully understood only in the context of the AIDS epidemic. Nevertheless, in 1987 and 1988 the court ruled that people with infectious disease are protected by the statute prohibiting discrimination against the handicapped.
Although scientific knowledge about AIDS has grown at an exponential rate, much remains unknown. At the same time, AIDS presents a series of highly problematic social policy questions that demand answers even in the face of incomplete medical knowledge and widespread fear. AIDS makes explicit a central tension in our polity: the premium we place on the rights of the individual to fundamental civil liberties versus the notion of the public good and the role of the state in assuring public welfare. Both sets of values, highly prized in our culture, have necessarily been brought to bear in the AIDS crisis. In the course of the twentieth century civil liberties were expanded and strengthened in the courts, making the conflicts posed by AIDS even more contentious.
Nowhere is this more clearly seen than in the current debate about testing and screening for human immunodeficiency virus (HIV) antibody. The discovery of the enzyme-linked immunosorbent assay (ELISA test) not only made possible the screening of blood to preserve the quality of the blood supply, it also made it technically possible to identify individuals with HIV. Although many, especially in the gay community, have viewed the test with grave concern because of the potential for
misuse in identifying and segregating, or even quarantining, individuals testing positive, others have viewed the test as the critical element in a campaign to stem the epidemic. The debate currently rages about the appropriate use of this test.
Beginning in late 1985 the U.S. Department of Defense announced that all new recruits for military service would be screened for HIV antibody and rejected if found to test positive. One justification of the screening program was that military personnel receive a wide variety of live-virus vaccinations that might cause serious disease in individuals whose immune systems were compromised. Military officials also contended that combat would provide a high risk for transmission of HIV, given that soldiers routinely serve as blood donors in the field. As Dorothy Porter and Roy Porter note in their chapter, the armed forces are typically the first to undergo massive screening for transmissible diseases. Although the military suggested that the screening program would maintain absolute confidentiality, in practice this may be difficult to achieve inasmuch as rejected candidates may suffer the stigma of HIV infection. Critics of the military screening program also argued that the test was being used to identify and remove gays from service.
The military screening program was merely the first; many others have been proposed, from the mandatory screening of high-risk groups to premarital testing, testing in prisons, and universal screening. Some proposals have called for mandatory testing of high-risk individuals, but they fail to recognize the implicit impossibility of identifying such groups and requiring them to be tested. How would officials implement legislation that mandated testing for only certain, ill-defined social groups? Because such proposals are impossible to enforce, only universal screening programs could be mandated. But such programs would have obvious problems.
Conservative columnist William F. Buckley, Jr., has recommended mandatory universal screening, with all seropositive individuals being tattooed on their forearms and buttocks. This, he suggests, would serve to stem the epidemic by warning those who might share needles or have sex with such individuals. The sorriness of Buckley's logic, however, is more than apparent. First, he fails to differentiate between those with AIDS and those who are positive for the antibody. Second, he fails to note the possibility of false positives, which, with mandatory testing, would become much more likely. As epidemiologists recognize, the incidence of false positive tests increases when the prevalence of infection in the population being tested is low. "We face a utilitarian imperative,"
wrote Buckley. But there is no evidence whatsoever that such an invasive and stigmatizing program would slow the spread of this epidemic. Buckley's proposal is all the more remarkable in light of his consistent attacks on intrusive government. A powerfully moralistic homophobia is only thinly veiled by such proposals.
When the epidemic worsens, as it most certainly will, society's desire to identify and segregate infected individuals will probably become more intense, even though massive, compulsory screening would offer little in the interests of public health. The public will cease clamoring for such measures only if the full costs and negligible benefits are clearly explained and understood. Otherwise, the irrational desire to segregate may be overwhelming.
Finally, it is worth questioning the purpose of testing, especially in light of the fact that, at this writing, there is no effective treatment for AIDS. In the 1930s, when states began to mandate premarital blood testing for syphilis, individuals found to be infected could seek treatment, become noninfectious, and go on with their lives; their contacts could be found, tested, and, if infected, treated. Such programs obviously served the interests of the individuals who were infected as well as the public interest. Such a program is not possible in the case of AIDS, for which there is currently no cure and no means of rendering noninfectious those individuals who carry HIV.
Some have argued that testing is advisable because knowing one's antibody status will encourage individuals to act responsibly, to avoid spreading the infection, and perhaps to avoid further risks that could contribute to the development of disease. This may be true for some, but it has yet to be determined; individuals may have quite variable psychological and behavioral responses to learning of their infection status. Many individuals, especially in the gay community, have altered their behavior without knowing their antibody status. The test has risks in that it is difficult, even in the best of circumstances, to guarantee that the results will be held strictly confidential. Fears that a positive test could lead to discrimination seem realistic in light of Justice Department rulings and the highly stigmatized view of the disease.
All this, of course, is not to argue that testing is useless. Many individuals, especially those likely to have come in contact with the virus, may want to learn their antibody status. Obviously, they should be able to do so under the strictest standards of confidentiality. Moreover, as treatments become available, it is likely that they will be most effective if initiated before the development of symptoms. It would thus become
important for infected individuals to find out on a timely basiswhile they are still asymptomatic-so they may seek treatment.
It is crucial to maintain the distinction between voluntary use of the test and mandatory screening. The test could be used as a "marker" to license discrimination in employment, housing, and the availability of health and life insurance. Mandatory screening could therefore have the effect of creating an underground epidemic in which infected individuals, fearing discrimination, isolation, or quarantine, refuse to cooperate with public health officials. Hidden infection is the nemesis of any effective campaign to halt an epidemic disease.
Among those asserting their right to require individuals to take the ELISA test are insurance companies, which argue that individuals who have been exposed to HIV are likely to have higher health-care costs than the population in general; therefore, they contend, such individuals should pay higher premiums. "If America's private voluntary-insurance system is to remain workable, AIDS tests must be allowed so the disease can be underwritten in the same manner as heart disease, cancer, or alcohol and drug abuse," explained Claire Wolkoff of the American Academy of Actuaries. "The alternative is to spread the risk factor over the whole population, thus raising the price of insurance for everyone." Several states have taken legislative action to bar insurers from requiring the test, or to assure its absolute confidentiality. When the District of Columbia passed such a resolution, Senator Jesse Helms, the conservative Republican from North Carolina, said "the truth is the so-called homosexual rights crowd has snookered the entire District of Columbia into footing the bill to provide special treatment for those who are at health risk because of AIDS." At least four life and health insurance companies announced a decision to stop doing business in Washington, D.C., rather than comply with the legislation.
The question at the heart of the debate over insurance testing is, who will bear the cost of AIDS? Should the costs of the epidemic be spread over the whole society, or should they be borne by those who have been and will be infected by HIV? Early studies estimated the average healthcare costs for AIDS patients to be about $150,000, although later investigations soon determined that this figure might be overestimated by as much as 100 percent. Total direct and indirect costs of the epidemicthe losses from medical care and incomerose to $3.3 billion by mid-1986. An added problem was that hospitals often had to pick up the tab for AIDS patients. This has been particularly true in New York City, where close to 30 percent of all AIDS victims are intravenous drug
users, whose health care costs tend to be higher and who are less likely to be insured. In this respect, AIDS again reveals deep and persistent social problems, in this instance, the problem of financing health care. How should the risks of catastrophic disease be spread? Should we apply an individualist ethic, or look to social programs to distribute the costs of disease more equitably? These questions have been on the national agenda for more than a generation. AIDS forces them out of the shadows.
At issue on who should bear the costs of the epidemic is the critical question: Who is responsible? This has been especially significant in the history of sexually transmitted diseases, traditionally viewed as diseases of individual moral failing.
The debate over screening for HIV antibody is ultimately part and parcel of a larger debate in American society over testing in general. New biotechnologies make it possible for tests to reveal a great deal about any individual: his or her health status, behaviors, medical risks, and genetic makeup. This is information that not only insurers but also employers and the state might want to have. The right to require tests, and the question of whose interests such tests are to serve, promise to be bitter and controversial issues in the years ahead. Indeed, they raise the question of whose interest medical science will serve. The issue of compulsory testing reflects the most fundamental tensions between civil liberties and social control.
Although Edward Brandt, then assistant secretary of health and human services, called AIDS the nation's "number-one priority" in public health in mid-1983, the federal government's response has been poorly coordinated and haphazard. In 1985 the Office of Technology Assessment (OTA) issued a report analyzing the federal government's response to AIDS; the report revealed a number of significant shortcomings. First, the government had been slow to respond: Although the Centers for Disease Control (CDC) had identified AIDS in 1981, research at the National Institutes of Health (NIH) did not begin in earnest until 1983; bureaucratic procedures appear to have prevented a more timely response to this public health emergency. Second, when NIH did take up the AIDS problem, research funding was inadequate. In 1982 and 1983 the administration did not budget any money for AIDS research; nevertheless, Congress allocated $33 million. The following year, the
administration asked for $39 million. Congress appropriated $61 million. In 1986 Congress allocated $234 million, but the Reagan administration proposed cutting this to $213.2 million; this, despite the fact that cases had been doubling every year. Underlying this debate over funding was the controversial nature of AIDS itself and its close association with homosexuality. Funding for the research and treatment of sexually transmitted diseases has always been suspect in the federal health budget.
The OTA report also pointed out the inattention paid to social and psychological factors associated with the diseaseespecially noteworthy in that preventive measures offered the only immediate hope of slowing the epidemic. Nevertheless, funds for education have been meager. In 1986 the CDC had $25 million available for education, although a full program would have required three times that amount. As Harvey V. Fineberg, dean of the Harvard School of Public Health, noted, "We understand enough about the cause and spread of the AIDS virus to give people the knowledge they need to protect themselves." And yet, outside the gay community, this is not being done.
Sex education has typically been an area of significant controversy, and this has proved especially true with respect to education programs about the AIDS epidemic for schoolchildren of various ages. As Walter Dowdle of the CDC explained: "The sense of urgency is somewhat different here. It's not a matter of philosophy and religious taboos. We are talking about prevention in life and death situations." The federal government, however, refused to issue educational materials explicitly advising "safe sex" practices, apparently fearing they would be construed as an "endorsement" of homosexuality. In this respect, federal officials were as fearful as the Victorian legislators (discussed by the Porters in the last chapter) that public health education might seem to "condone" vice.
Although behavioral means are the only current hope for preventing the further spread of the disease, as the history of the sexually transmitted diseases makes clear, altering behavior is no simple matter. Sexuality is a powerful force, certainly subject to individual will, but not completely so. Such problems as intravenous drug use highlight the issue of addiction, which clearly points to the fact that behavior is not always subject to control. Behavioral practices, though clearly related to patterns of disease, are poorly understood in contemporary biomedicine. Indeed, the underlying assumption about behavior, and one deeply ingrained in our culture, is that it is entirely voluntary. According to this logic, individuals "should" modify their behavior once appropriately in-
formed about risks. Moreover, we know too little about how to assist individuals who seek to make and maintain difficult behavioral alterations. This is as true for sexual behavior as it is for drug addiction, the two principal mechanisms for the transmission of the AIDS virus. Preventive medicine and health promotion have had inadequate attention in modern medicine, where the emphasis has been on treatment, cure, and technologythe search for "magic bullets."
AIDS makes explicit, as few diseases could, the complex interaction of social, cultural, and biological forces. Given the social history of venereal disease in the United States, this is hardly surprising. But, as disease is shaped by its particular social and historical context, so will the response. Nevertheless, the analogues that AIDS poses to the broader history of sexually transmitted diseases in the United States are striking: the pervasive fear of contagion, concerns about casual transmission, the stigmatization of victims, the conflicts between public health and civil liberties, and the search for magic bullets. How these issues will be resolved as the AIDS epidemic continues to unfold in the years ahead is far from certain.
History is not a predictive science. AIDS is not syphilis, and the historical moment has shifted. But one thing is certain: The response to AIDS, as can already be seen, will not be determined strictly by the disease's biological character; rather, that response will be deeply influenced by our social and cultural understanding of disease and its victims. And, indeed, even our scientific understanding of the disease will be refracted through our cultural values and attitudes. History provides us with a way of understanding and approaching the present. The recognition of the process by which AIDS has been culturally defined provides us with an opportunity to guide and influence responses to the epidemic in ways that will be constructive, effective, and humane.
A series of difficult dilemmas are just offstage. Can we protect the rights of AIDS victims while avoiding the victimization of the public? How will the conflict between individual liberties and public welfare be resolved? In the months and years ahead the problem of constructing cost-benefit ratios for various policies will be confronted. Who will bear the burdens of any particular intervention? What are the potential unintended consequences of any particular policy? Traditional public health policies have been advocated: screening, testing, reporting, con-
tact tracing, isolation, and quarantine. Will these measures be effective in the case of AIDS, which is complicated by the large number of healthy carriers perhaps infectious for life?
There are two criteria by which any proposal must be evaluated. First, effectiveness : There must be considerable evidence that any particular policy offers substantial benefit. The second criterion for public interventions should be justice : Is it the least restrictive of all possible positive measures?
Although we know a good deal about AIDS, much still lies outside current scientific understanding. Policies relating to AIDS will, of course, be created in this atmosphere of uncertainty, complicated by the decline of the authority of scientific expertsfrom Three Mile Island, to Love Canal, to the space shuttle, to Chernobylwhich has had the effect of creating significant public distrust. Our fortunate inexperience, as a society, with major epidemics (since polio) accounts for our relative lack of social and political savvy in dealing with such problems. In fact, we would probably have to go back to the influenza pandemic of 1918 to identify a pathogen as dangerous as the AIDS virus. That is, we have few models for dealing with public health issues of this magnitude and complexity.
Our notions of cost-benefit analyses and social policy are characterized by a naive belief in policies without costs. All social policies carry certain costs, but in our political culture we tend to reject policies when the costs become explicit, even if they promise significant benefits. This has been seen in two proposals to slow the spread of the infection. As in the early twentieth century, education has been proffered as one of the few strategies capable of slowing the spread of disease. But discussions must assess the meaning and content of such education. Explicit sexual education has been rejected by some officials because it is viewed as encouraging homosexuality; the costs are thus evaluated as too high. Another recent proposal has met a similar fatethe idea of providing sterile needles to intravenous drug users to slow down the rapid spread of the disease among that community. This idea has proved unpopular thus far because it is seen as contributing to the drug problem. Underlying such assessments, of course, is the idea that AIDS is a "self-inflicted" disease.
As was the case in the early twentieth century, public health measures that require dramatic infringements of civil liberties are again being proposed. As we saw in the Porters' chapter on the enforcement of health measures in Britain, such steps have had little if any impact on the public health. In the United States, similar harsh measures have been ineffec-
tive: For example, rates of venereal disease climbed rapidly during World War I, despite radical government measures regarding the incarceration of prostitutes. This is not to suggest the purely pragmatic notion that if an intervention works it is right. Rather, if an intervention does not produce results, and yet is supported by officials and the public, one must look for secondary reasons to explain that support. The issue thus becomes not the desire to protect the public from hazardan idea so basic to modern governments that few would question it in principle; our most fundamental notions of social welfare are based upon it. Rather, these activities indicate a transformation from protection to punishment; a clear signal that the disease and those who get it are socially disvalued.
In view of the fear and aversion that surround AIDS, there is a clear danger that policies with little or no potential for slowing the epidemic could nevertheless have considerable legal, social, and cultural appeal. What can be done to separate realistic concerns from irrational fears? How can victim-blaming and stigmatization of high-risk, already marginal, groups be avoided? This process of dividing victims into blameless and blameful categories is analogous to early twentieth-century notions of venereal disease insontium, and is evident, for example, in assessments such as the following 1983 article appearing in the New York Times Magazine :
The groups most recently found to be at risk for AIDS present a particularly poignant problem. Innocent bystanders caught in the path of a new disease, they can make no behavioral decisions to minimize their risk: hemophiliacs cannot stop taking bloodclotting medication; surgery patients cannot stop getting transfusions; women cannot control the drug habits of their mates; babies cannot choose their mothers.
This passage illustrates a number of problems. First, it suggests that the disease is somehow more "poignant" when it attacks nonhomosexuals. Second, if these groups are "innocent bystanders," then those at highest risk of contracting AIDS are "guilty." This discussion implies that the entire community is at risk from the sexual practices of homosexuals. In some quarters the misapprehension persists: AIDS is caused by homosexuality, not by a retrovirus. According to this confused logic, the answer to the problem is simple: Repress these behaviors. Implicit in this approach to the problem are powerful assumptions about culpability and guilt.
Indeed, assessments of AIDSas of most sexually transmitted dis-
eases in the twentieth centuryrest on the essentially simplistic view that the problem can be solved if individuals conduct their sexual life more responsibly, a view that rests on the explicit assumption that an individual's behavior is free from external forcesthat a "life-style" is strictly voluntary. These persistent assumptions about health-related behavior rest on an essentially naive view of human nature. If anything has become clear in the course of the twentieth century it is that behavior is subject to complex forces, internal psychologies, and external pressures, all of which are not subject to immediate modification or, arguably, to modification at all. Sexuality is subject to a number of powerful influences, social and economic, conscious and unconscious, many more powerful than even the fear of disease and death. In this view, sexuality is equated with other risk-taking behaviorssmoking, drinking, poor eating habits, driving too fast. Individuals can, of course, be held partly accountable for these behaviors, but the questions of to what extent and whether they should be are not as simple.
The persistence of such values and attitudes calls into question the received view of the sexual revolution in whose aftermath we are living. Serious and important changes in sexual mores and practices have undoubtedly taken placethe gay-liberation movement is but one example. But this makes certain continuities all the more striking. Social values continue to define sexually transmitted diseases as uniquely sinful and, indeed, to transform them into evidence of moral decay; some still believe that fear of disease encourages a higher morality. It thus seems naÃ¯ve and wishful to assert that we have conquered moral puritanism within ourselves, because underlying tensions in American sexual values persist, tensions that are brought forward in our approach to AIDS as well as to venereal diseases. To conservative foes of the sexual revolution, the message is clear: The way to control sexually transmitted disease is not through medical means but through moral rectitude. A disease such as AIDS is controlled by controlling individual conduct.
The final chapter by Daniel Fox demonstrates that one current trend in health care policy is to accept this model of disease and to apply it to a myriad of other illnesses, to reduce the emphasis on social or external determinants of disease and health, and to stress individual responsibility. This model, however, has failed venereal disease, and the historical record renders it a dubious precedent. The presumption nevertheless remains. Behaviorbad behavior at thatis seen as the cause of disease. These assumptions may be powerful psychologically, and in some cases
they may influence behavior, but so long as they are dominantso long as disease is equated with sinthere can be no "magic bullet."
In this sense the old scare tactics have failed; denial and repression of sexuality have failed; victim-blaming and moralizing have failed as effective public health mechanisms. Although biomedical solutions offer much hope, they, too, have been unable to free us from infectious disease. More creative and sophisticated approaches to this set of diseases are necessary. Behavioral changes may indeed be a significant factor in disease, and new techniques to assist those who seek to change are needed. But we need to recognize that "behavioral change" does not have to mean celibacy, heterosexuality, or morality; rather, it means avoiding contact with a pathogen.
AIDS makes painfully explicit the limits of our ability to intervene against the course of the biological world. Sexual contact is one of a number of ways in which microorganisms are transmitted from human to human. New or altered infectious agents are passed this way; no single medical treatment has proved effective for these infectious organisms. This, then, reveals the fundamental flaw in the biomedical model; that is, the search for magic bullets. Venereal diseases, indeed, all infectious diseases, constitute complex bioecological problems in which host, parasite, and a number of social and environmental forces interact. No single medical or social intervention can thus adequately address the problem. Just as social mores and practices change, so, too, does the biological system. New infections such as AIDS may appear, or older, once-controlled infectious diseases, such as gonorrhea, may become intransigent in the face of agents whose effectiveness is attenuated as the organism itself changes. As one observer recently remarked, the battle against infectious disease is an ongoing "leap-frog war."
Caught in the complex web of social and scientific questions surrounding AIDS, we easily forget the dimensions of the tragedy. While disease tells us much about the nature of our society, it also reveals the nature of illness, suffering, and death and dying. The high mortality associated with AIDS and the growing number of cases could become the justification for drastic measures. "Better safe than sorry" could well become a catch phrase to justify dramatic abuses of basic human rights in the context of an uncertain science. Moreover, the social construction of this disease, its close association in much of the public's eye with violations of the moral code, could contribute to spiraling hysteria and anger. This cycle has already led to further victimization of patients, the double jeopardy of lethal disease and social oppression.
The social costs of ineffective, draconian public health measures would only augment the crisis we know as AIDS. But such measures can be avoided only if we are adept in both our medical and cultural understanding of this disease. For we need to perform a difficult task, that of separating deeply irrational fears from scientific understanding. Only when we recognize the ways in which social and cultural values shape this disease will we be able to begin to deal effectively and humanely with a problem as serious and complex as AIDS.
AIDS is an unfinished chapter in our medical and social history, demonstrating the nature of contemporary biomedical science and research; our beliefs about health, disease, and contagion; and our ideas about sexuality and social responsibility. AIDS demonstrates how economics and politics cannot be separated from disease; indeed, these forces shape our response in powerful ways. In the years ahead we will, no doubt, learn a great deal more about AIDS and how to control it. We will also learn a great deal about the nature of our society from the manner in which we address the disease: AIDS will be a standard by which we may measure not only our medical and scientific skill but also our capacity for justice and compassion.
This essay first appeared in somewhat different form in Law , Medicine , and Health Care 14 (1986): 231-241.
1. One model has already been proposed in Susan Sontag's brilliant polemic, Illness as Metaphor . In this work, Sontag assessed the important ways in which tuberculosis and cancer have been used as metaphors. Using techniques of literary analysis, she demonstrated prevailing cultural views of these diseases and their victims. See Sontag, Illness as Metaphor (New York: Vintage, 1978).
2. The following discussion is abbreviated from my book, No Magic Bullet : A Social History of Venereal Disease in the United States since 1880 , rev. ed. (New York: Oxford University Press, 1987).
3. On the problem of ophthalmia neonatorum, see Abraham L. Wolbarst, "On the Occurrence of Syphilis and Gonorrhea in Children by Direct Infection," American Medicine 7 (1912): 494; Carolyn Von Blarcum, "The Harm Done in Ascribing All Babies' Sore Eyes to Gonorrhea," American Journal of Public Health 6 (1916): 926-931; and J. W. Kerr, "Ophthalmia Neonatorum: An Analysis of the Laws and Regulations in Relation thereto in Force in the United States," Public Health Service Bulletin no. 49 (Washington, D.C.: U.S. Government Printing Office, 1914).
4. Albert H. Burr, "The Guarantee of Safety in the Marriage Contract," Journal of the American Medical Association 47 (1906): 1887-1888.
5. See Eugene Brieux, Damaged Goods , trans. John Pollack (New York:
Brentano's, 1913). On the critical reception of the play see "Demoralizing Plays," Outlook 150 (1913): 110; John D. Rockefeller, "The Awakening of a New Social Conscience," Medical Reviews of Reviews 19 (1913): 281; "Damaged Goods," Hearst ' s Magazine 23 (1913): 806; "Brieux's New Sociological Sermon in Three Acts,'' Current Opinion 54 (1913): 296-297. See also, Barbara Gutmann Rosenkrantz, "Damaged Goods: Dilemmas of Responsibility for Risk," Milbank Memorial Fund Quarterly 57 (1979): 1-37.
6. Howard Kelly, "Social Diseases and Their Prevention," Social Diseases 1 (1910): 17, and "The Protection of the Innocent," American Journal of Obstetrics 55 (1907): 477-481.
7. On prostitution during the Progressive era in America, see Paul S. Boyer, Urban Masses and Moral Order (Cambridge: Harvard University Press, 1978); Ruth Rosen, The Lost Sisterhood : Prostitution in America , 1900-1918 (Baltimore: Johns Hopkins University Press, 1982); and Mark Thomas Connely, The Response to Prostitution in the Progressive Era (Chapel Hill: University of North Carolina Press, 1980).
8. On nonvenereal transmission, see especially L. Duncan Bulkey, Syphilis of the Innocent (New York: Bailey and Fairchild, 1894).
9. "What One Woman Has Had to Bear," Forum 68 (1912): 451-454. See also "New Laws About Drinking Cups," Life 58 (1911): 1152.
10. The wartime policy for the attack on the red-light districts and the testing and incarceration of prostitutes is described in greater detail in Brandt, No Magic Bullet , 80-95.
11. T. W. Gregory, "Memorandum on Legal Aspects of the Proposed System of Medical Examination of Women Convicted Under Section 13, Selective Service Act," National Archives, Washington, D.C., Record Group 90, Box 223. See also Mary Macey Dietzler, Detention Houses and Reformatories as Protective Social Agencies in the Campaign of the United States Government Against Venereal Diseases , United States Interdepartmental Social Hygiene Board (Washington, D.C.: Government Printing Office, 1922).
12. C. C. Pierce, "The Value of Detention as a Reconstruction Measure," American Journal of Obstetrics 80 (1919): 629.
13. "AFRAIDS," New Republic , 14 October 1985, 7-9. See also Charles Krauthammer, "The Politics of a Plague," New Republic , 1 August 1983, 18-21.
14. New York Times , 26 June 1985.
15. Jay A. Winsten, "Fighting Panic on AIDS," New York Times , 26 July 1983.
16. "The Fear of AIDS," Newsweek , 23 September 1985, 18-25. On the school controversy see New York Times , 13, 24 October 1985, and 8 December 1985. Also David J. Rothman, "Public Policy and Risk Assessment in the Case of AIDS," in AIDS : Public Policy Dimensions (New York: United Hospital Fund, 1986).
17. Leon Eisenberg, "Private Trust/Public Confidence in Science and Medicine: The Genesis of Fear," Law , Medicine and Health Care 14 (1986): 243-249; Robert Balzell, "The History of an Epidemic," New Republic , 1 August 1983, 14-18; Richard Goldstein, "The Uses of AIDS," Village Voice , 5 November 1985, 25-27.
18. "Fear and AIDS in Hollywood," People , 23 September 1985, 28-33; New York Times , 7 November 1985; Washington Post , 28 July 1985.
19. Life , July 1985, 12-21.
20. See Ronald Bayer, Homosexuality and American Psychiatry : The Politics of Diagnosis (New York: Basic Books, 1981).
21. New York Post , 24 May 1983.
22. Quoted in New York Times , 18 March 1986.
23. Erving Goffman, Stigma : Notes on the Management of Spoiled Identity (Englewood Cliffs, N.J.: Prentice-Hall, 1963).
24. On the Justice Department ruling, see New York Times , 23, 27 June 1986; Wall Street Journal , 27 June 1986.
25. New York Times , 26 June 1986.
26. Charles Krauthammer, "Fear Him and Fire Him," Washington Post , 27 June 1986.
27. New York Times , 1 July 1986.
28. On military testing, see New York Times , 13 October 1985, 31 January, and 2 February 1986; Science 232 (16 May 1986): 818-820. The results of military screening have shown relatively high rates of infection. In Manhattan 2 percent of individuals applying to enter the service have been found to be infected; these numbers are fifteen to twenty times higher than the estimated national prevalence.
29. Among those who have recommended mandatory screening for those at high risk are Lewis Kuller, professor of epidemiology at the University of Pittsburgh, and Paul Starr, professor of sociology at Princeton. See Chronicle of Higher Education , 4 June 1986.
30. William F. Buckley, Jr., "Identify All the Carriers," New York Times , 18 March 1986.
31. See, for example, Mark Senak, "Ban AIDS Blood Tests," New York Times , 27 May 1986.
32. New York Times , 11 June 1986. See also the full-page advertisement of the American Council of Life Insurance and the Health Insurance Association of America, Washington Post , 11 May 1986.
33. Quoted in Washington Post , 20 June 1986, and 28 June 1986.
34. New York Times , 8 June and 10 January 1986, 3 November 1986; on the problem of financing AIDS see also George R. Seage, "The Medical Cost of Treatment of AIDS/ARC Patients," unpublished paper, Boston Department of Health and Hospitals, 12 May 1985; Philip R. Lee, "AIDS: Allocating Resources for Patient Care," Issues in Science and Technology 2 (1986): 66-73; and especially Rashi Fein, "AIDS and Economics," unpublished paper, AIDS Institute of the New York State Department of Health, 29 May 1986.
35. Washington Post , 25 May 1983, 23 July 1985; New York Times , 15 June 1983, and 29 July, 24 October 1985; and especially, U.S. Congress, Office of Technology Assessment, Review of the Public Health Service ' s Response to AIDS : A Technical Memorandum , February 1985.
36. Harvey V. Fineberg, "A Way to Tackle AIDS Education," New York Times , 13 July 1986; also Paul Cleary et al., "Health Education about AIDS," Health Education Quarterly 13 (Winter 1986): 317-330.
37. New York Times , 6 July 1986.
38. For an analysis of the difficult social policy questions raised by AIDS, see Ronald Bayer, "AIDS, Power, and Reason," Milbank Quarterly 64 (1986): 168-182. On legal issues see Harlon Dalton and Scott Burris, eds., AIDS and the Law (New Haven: Yale University Press, 1987).
39. See Leon Eisenberg, "Private Trust/Public Confidence in Science and Medicine: The Genesis of Fear," Law , Medicine , and Health Care 14 (1986): 243-249.
40. Robin Marantz Henig, "AIDS: A New Disease's Deadly Odyssey," New York Times Magazine , 6 February 1983, 36.
41. See, for example, John H. Knowles, "The Responsibility of the Individual," Daedalus 106 (1977): 68; and Robert Carlen, "Against Free Clinics for Sexually Transmitted Diseases," New England Journal of Medicine 307 (1982): 1350.
42. Harry Dowling, Fighting Infection : Conquests of the Twentieth Century (Cambridge: Harvard University Press, 1977), 228-250; New York Times , 23 January 1977.