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The Social Impact of Aids in the United States 2 The Practice of Public Health The practice of public health in the United States is more strongly influenced by the federal character of the U.S. system than is almost any other aspect of the health care system. State governments have the primary responsibility for public health: each state and territory has a chief public health officer, a public health department, and a system of county and city health departments with links to the state system. The authorities and responsibilities of the state and territorial health officers vary, but all share a common mission of protecting the public against various types of infectious or communicable diseases. A number of states have strong traditions of providing primary health care services to low-income populations through county and city health facilities. At the federal level, the Centers for Disease Control (CDC, part of the U.S. Department of Health and Human Services) has responsibility for monitoring communicable diseases, many chronic diseases, and occupational disorders, as well as threats to public health that have been only recently recognized as being in the domain of the health care system, such as prevention of violence and accidents. CDC maintains strong working relationships with state and territorial health officers, frequently sending epidemiologists and other personnel to work at the state or local level and providing sophisticated surveillance and technical assistance programs to assist state and local health departments in dealing with novel or emergency situations. It was therefore logical that in the early and mid-1980s, as the United States began to confront the public health challenge posed by the AIDS
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The Social Impact of Aids in the United States epidemic, the CDC became the focal point for developing a strategy of prevention and public health response. As a result of significant increases in funding for AIDS since the early 1980s, AIDS-related programs constitute more than 40 percent of the current CDC budget. In addition, the highly visible role that CDC epidemiologists played in linking AIDS to particular life-styles and in engaging the discussion of how to prevent the spread of the epidemic by public health measures has significantly defined the public perception of the public health profession. Public health practitioners have long been responsible for surveillance of the spread of communicable diseases and for population-based interventions to alter the course of epidemics. Over the course of the AIDS epidemic, public health providers increasingly have been drawn into supplying primary care services for HIV-infected individuals. Especially since therapies have become available to treat HIV disease before symptoms appear, public health providers are not only implementing programs to offer individual counseling and education, but also providing diagnostic services and medical care. This chapter considers both the public health response to the needs for surveillance and prevention of HIV/AIDS and the role that public health departments play in delivering health services related to the epidemic. It begins with the debate that has raged around whether HIV and AIDS should be treated as a condition that is exceptional or as one subject to traditional public health measures to stem the spread of infection. This controversy centers around the question of whether the history of responses to lethal infectious disease provides relevant lessons for containing the spread of HIV infection and whether policies developed for the control of sexually transmitted disease (STDs) or other communicable conditions can and should be applied to AIDS, a disease of marginalized, already stigmatized, groups. Public health policies and practices are determined and implemented at all levels of government—federal, state, and local. This chapter does not attempt to cover all of these; it focuses primarily on national issues and actions. Nor does it try to review all policy decisions and controversies; rather, it considers those concerning HIV antibody testing and screening, contact tracing of the sexual and needle-sharing partners of infected individuals, and the isolation and quarantining of infectious individuals. The chapter concludes by considering the role of public health departments in delivering medical care, planning for health services, and reacting to political controversy.
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The Social Impact of Aids in the United States HISTORICAL APPROACHES TO DISEASE CONTROL AND "EXCEPTIONALISM" The conventional approaches to public health threats were largely codified in the late nineteenth and early twentieth centuries. Public health law tended to provide a warrant for compulsory examination and screening and for breaching the confidentiality of the clinical relationship through requiring physicians to report to public health registries the names of people diagnosed with "dangerous diseases." It also established conditions for the imposition of treatment, and, in the most extreme cases, permitted confinement through the power of isolation and quarantine. Although the statutes were revised over the decades, they retained the imprint of their genesis (Merritt, 1986; Burris, 1989). The most coercive elements of this public health tradition were rarely brought to bear in the mid-twentieth century because of changing patterns of morbidity and mortality, the development of effective clinical alternatives, and limitations imposed by changing conceptions of the police power of the state. As chronic diseases linked to smoking, alcohol consumption, and diet began to displace infectious diseases as the major concern of public health officials, a new approach emerged, one that centered on health promotion campaigns designed to foster the modification of personal behaviors. Major and widespread life-style changes, not the traditional repertoire of public health interventions, are central to the vision of such documents as Healthy People 2000 (U.S. Department of Health and Human Services, 1991). In some contexts, coercion is still deemed effective and justifiable from a public health perspective (e.g., laws mandating use of motorcycle helmets and automobile seat belts; Moreno and Bayer, 1985), and elements of the restrictive tradition play a significant role in the assault on public smoking and the efforts to apply economic sanctions to behaviors deemed detrimental to public well-being (e.g., cigarette and alcohol tax policies), but mass persuasion is the core feature of the "new public health." In its spread, HIV/AIDS resembles the infectious conditions and stigmatized sexually transmitted diseases that shaped early public health statutes and practices. But the HIV/AIDS epidemic also resembles the conditions that have become the major threats to public health in the post-antibiotic era—linked to patterns of behavior that are rooted in the normative structures of the communities at risk. Some public health traditionalists, supported by some conservative political forces, argued in favor of the similarities of AIDS to all other communicable diseases and pressed to have AIDS and HIV infection brought under the standing of broad statutory provisions for control of communicable and sexually transmitted diseases, but they were in the minority. Out of the often bitter controversies that surfaced in the epidemic's early years, people who argued that the new public
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The Social Impact of Aids in the United States health perspective, founded on education, should inform efforts to contain the spread of HIV infection, came to dominate public discourse. Against the tradition of infectious disease control, this perspective represented the determination to treat AIDS fundamentally different, thus necessitating "exceptionalist" policies (Bayer, 1991b). The exceptionalist approach dominated in part because some important features of AIDS set it apart from most other infectious diseases. AIDS is incurable with present therapies. It largely afflicts marginalized or threatened populations who have historically rooted fears about the state and antagonism to its institutions. It is primarily transmitted in contexts that involve consenting adults engaging in specific sexual acts or drug-using activities. Containing the spread of HIV infection, then, requires modification in intimate behaviors that would presumably be difficult to make and maintain. Hence, it was believed that the strategy of prevention ought to eschew all appearance of coercion and threats to privacy. Failure to adopt a course that would win the cooperation of those most at risk, it was asserted, would "drive the epidemic underground." The specter of the coercive tradition and the threat to privacy and modern understanding of civil liberties and individual rights most concerned proponents of civil liberties and advocates of gay rights as they considered the potential direction of public health policy in the face of AIDS (Bayer, 1991b). Would there be wide-scale compulsory testing? Would the names of the infected be recorded in central registries? How would such registries be used to restrict those with HIV infection? Would the power of quarantine be used, if not against all infected persons, then against those whose behavior, it was assumed, could result in the further transmission of infection? In answering these questions, an alliance of gay leaders, proponents of civil liberties, physicians, and public health officials began to shape a policy for dealing with AIDS. Education, it was broadly agreed, had to be the centerpiece of the effort. Sharp disagreements emerged, however, when political pressure was brought to bear to "sanitize" the campaigns through the imposition of restrictions on the language that could be used and the pictorial material that could be displayed (Barnes, 1989). Testing for HIV infection was to be undertaken only after obtaining the informed consent of those to be tested. The tradition of compulsory or routine mass public health screening in the face of epidemic threats was rejected. The reporting of those with HIV infection to public health registries was to be avoided because it might discourage individuals from voluntarily coming forward for HIV testing. Confidentiality of HIV-related medical records was to be rigorously protected, sometimes at the cost of warning intimates who could unknowingly be subjected to the threat of infection. The use of the power of quarantine was to be avoided even when it was found that in specific
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The Social Impact of Aids in the United States cases an individual was behaving in ways that posed a threat of infection to others. Several critical questions were inevitably provoked by this set of policies: Were they an artifact of the early uncertainties that surrounded AIDS? Would the unique political alliance that made possible the exceptionalist perspective be sustained over time? Would policy toward AIDS provide an impetus for the reformulation of the standard approach to other sexually transmitted and communicable diseases? As the epidemic's second decade begins, it is clear that the strength of the alliance that developed and defended the perspective of HIV exceptionalism has begun to wane (Bayer, 1991b). AIDS increasingly affects groups that are less articulate and lacking the political organization of the gay population that helped forge that alliance. In addition, there is little evidence that the response to AIDS has shaped the course of public health policy more generally. The erosion of the exceptionalist perspective and the lack of influence on broader public health policy related to disease surveillance and behavioral interventions are clear from an analysis of policy and practice with regard to HIV testing, reporting, partner notification, and quarantine and isolation. The extent to which these changes are attributable to the changing opportunities for treatment remains a matter of debate. HIV TESTING No issue has consumed more attention in the controversies over public policy and AIDS than the use of the antibody test to identify people infected with HIV. In the period following the test's development and licensing in 1985, controversy centered on the role of testing in supporting the radical modifications of behavior that were universally deemed to be critical to altering the epidemic's course. Proponents of aggressive but voluntary testing believed that knowledge of HIV status could be an important motivator of behavioral change, but gay leaders and their allies were skeptical. They suggested that the required changes could best be produced by aggressive education and by appropriately targeted strategies of individualized counseling even if individuals did not know their status. This debate was framed by the fears of gay men and those who spoke on their behalf that the putative benefits that testing could produce could not outweigh the negative psychological and social consequences of being identified as infected—loss of jobs, insurance, and housing. "Don't take the test" became their rallying cry (Bayer, 1991a). Out of the testing debates emerged a broad consensus, often codified in state statutes, that testing should be conducted only with the informed, voluntary, and specific consent of individuals and that any testing that did occur should be preceded by counseling that would make explicit the risks
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The Social Impact of Aids in the United States and benefits of testing and followed by counseling that would explain the test's significance. However, there were a number of carefully defined, although always contested, exceptions to voluntary, individualized testing. The Defense Department initiated screening of all new recruits and students at service academies and in the college Reserve Officers' Training Corps (ROTC) program: people who test HIV positive are not eligible for military service. The State Department, Peace Corps, and Job Corps also routinely screen employees. These screening programs have withstood court challenges (Gostin, 1990). In addition, many clinicians and hospitals undertook surreptitious testing of patients, justifying their actions by the belief that the protection of health care workers and sound diagnostic work required such screening. In a survey of HIV testing policies in 561 nonfederal, acute care hospitals (Lewis and Montgomery (1990:2767) found: [T]he current state of policy adoption related to HIV testing provides no guarantee that [patients] rights will be protected. For example, one of four hospitals surveyed does not require patients' informed consent prior to testing, and one in three does not require pretesting counseling. Moreover, one in four hospitals surveyed does not require a patient to be notified if a test result is positive. With the announcement in mid-1989 that clinical trials had revealed the efficacy of early therapeutic intervention in slowing the course of illness in asymptomatic but infected persons and in preventing the occurrence of Pneumocystis carinii pneumonia, the political debate about testing underwent a fundamental change. Gay groups such as Project Inform in San Francisco and the Gay Men's Health Crisis in New York (Lambert, 1989) began to encourage people whom they had formerly warned against testing to determine whether they were infected. Physicians pressed more vigorously for the return of AIDS to the medical mainstream so that testing might be routinely done under conditions of informed consent (Rhame and Maki, 1989). And state and federal public health officials launched more aggressive testing campaigns. Physicians and public health officials have typically avoided the language of compulsion, stressing instead routine HIV testing, testing that would be initiated by doctors caring for people they believed to be at risk. Thus, in the fall of 1990, the House of Delegates of the American Medical Association voted to declare AIDS a sexually transmitted disease, a designation that would give physicians much greater latitude to determine the conditions under which HIV testing should be undertaken. Nowhere has the shifting perspective on testing been clearer than in the emergence of a powerful movement, supported by obstetricians and pediatricians, for the routine screening of pregnant women, who can transmit HIV infection to their offspring, and the mandatory screening of infants at high risk for infection. For pregnant women, the public health practice of
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The Social Impact of Aids in the United States testing for syphilis and hepatitis B provided a model. For newborns, the wide-scale and broadly accepted tradition of screening for congenital conditions, such as phenylketonuria (PKU), served as the standard.1 The promise—although based on only minimal clinical evidence—that early intervention might protect the fetus or at least enhance the life prospects of babies at risk for HIV infection was used to argue against ethical concerns about the coercive identification of infected women, most of whom were black or Hispanic, and the related dangers of exclusion from housing, social services, and health care itself that might be imposed on women and infants so identified. In the spring of 1991, evidence of the effectiveness of initiation of prophylaxis against Pneumocystis carinii pneumonia in HIV-positive infants who had yet to develop symptoms but had CD4 cell counts of fewer than 1,500 further fueled the arguments by pediatricians for newborn testing (Centers for Disease Control, 1991). However, none of the arguments overcame the opposition to mandatory testing by many health and other experts. In the words of a special committee of the Institute of Medicine (Hardy, 1991:1-2): History has revealed that mandatory screening programs are frequently inflexible, often because they are legislated, and that program modification over time proves difficult. … Voluntary HIV screening (with specific informed consent) permits greater flexibility than mandatory screening in accommodating change. The committee opposes any mandatory newborn or prenatal screening program (other than anonymous screening for surveillance purposes). In 1991 the controversy over the risk posed to patients by HIV-infected health care workers who undertake invasive procedures reopened the question of testing medical personnel (Barnes et al., 1991). Some people argued that testing was not an issue because the risk of HIV transmission is extremely small. However, others believed that infected clinicians had a duty to inform their patients about their own HIV status or to seek advice from colleagues about withdrawing from the practice of invasive procedures; for them, testing was an issue that had to be confronted. Although some believed that mandatory screening of health care workers was not called for, most who believed that infected clinicians had a moral and professional duty either to inform their patients regarding their serologic status or to desist from invasive procedures held that the "duty to inform or withdraw" imposed a correlative responsibility on institutions to identify. Hovering over the entire debate has been the recognition that any policy of screening for health care workers would inevitably produce pressure for the mandatory testing of patients as well. (For further discussion of this subject, see "Confronting Occupational Risks" and "HIV-Infected Practitioners and Risks to Patients" in Chapter 3).
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The Social Impact of Aids in the United States REPORTING AND CONTACT TRACING Reporting Cases of AIDS and HIV Infection A diagnosis of full-blown AIDS has been a reportable condition in every state since 1983. The names of people who meet specified diagnostic criteria are reported to confidential public health department registries, and the addition of AIDS to the list of reported conditions provoked little controversy. But all moves to extend such reporting requirements to HIV infection have been fiercely resisted by gay groups, civil liberties organizations, and others because of concerns about privacy and confidentiality. Public health officials in areas with a large number of AIDS cases also tended to oppose reporting because of the potential negative impact on the willingness of individuals to seek voluntary HIV testing and counseling. Such concerns also informed the recommendations of the Institute of Medicine (1988a) in its report, Confronting AIDS. As a consequence, the reporting of HIV infection had become policy in only a handful of states by the mid-1980s (Intergovernmental Health Policy Project, 1989). A major change in the reporting debate was signalled when the Presidential Commission on the HIV Epidemic (1988)—authorized by President Reagan and chaired by Admiral James D. Watkins—urged in its final report the universal adoption of a policy of mandatory HIV reporting. More significant than the commission report, however, were the fissures that had begun to appear in the alliance among groups that had opposed named reporting in those states where the prevalence of HIV infection was high and where gay communities were well organized. In New York, for example, the same suit that sought to compel the commissioner of health to declare AIDS a sexually transmitted disease demanded that HIV infection be made a reportable condition,2 a position that was echoed in 1990 by the American Medical Association. What made the suit so remarkable was the positions of the opposing sides. Historically, clinicians have resisted efforts by public health officials to require the reporting by name of individuals with infectious diseases, arguing that such policies represented an intrusion on the doctor-patient relationship (Fox, 1986). In this instance the representatives of clinical medicine were asserting that reporting was critical to the public health but the state's chief health official did not agree. That apparent paradox can be explained by the unique political alliances that had been created early in the epidemic among gay organizations, civil liberties groups, and public health officials. But by June 1989, even that feature of the political landscape of public health had begun to change. In an address that was met with cries of protest, Stephen Joseph, commissioner of health in New York City, told the Fifth International Conference on AIDS that the prospect of early clinical intervention necessitated "a
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The Social Impact of Aids in the United States shift toward a disease control approach to HIV infection along the lines of classic tuberculosis practices" (Joseph, 1989:10). A central feature of such an approach would be the "reporting of seropositives" to ensure effective clinical follow-up and the initiation of "more aggressive contact tracing." Joseph's proposals opened a debate that was only temporarily settled by the defeat of New York's Mayor Edward Koch in his bid for reelection. When newly elected Mayor David Dinkins selected Woodrow Myers, former commissioner of health in Indiana, to replace Joseph, his appointment was almost aborted in part because he had supported the reporting of individuals with HIV infection (Lambert, 1990). The acrimonious debate was ended only by a political decision on the part of the mayor, who had drawn heavily on support within the gay community in his campaign, to stand by Myers' appointment while promising that there would be no named reporting in New York City. In New Jersey, which shares with New York State a relatively high level of HIV infection, the commissioner of health also came to support named reporting, but the politics that surrounded the issue in New Jersey were very different. There, both houses of the state legislature endorsed without dissent a confidentiality statute that included named reporting of cases of HIV infection. New Jersey simply exemplified a national trend: although only nine states at the end of 1989 required named reporting without any provision for anonymity, states increasingly were adopting policies that required reporting in at least some circumstances (Intergovernmental Health Policy Project, 1989). At the end of 1990, the Centers for Disease Control (1990) also endorsed named reporting of those with HIV infection. At the state and federal levels, the arguments for such a shift tended to stress that new therapeutic possibilities warranted reestablishing traditional public health practice. At the same time, there was pressure to extend the provision of Medicaid coverage for early HIV treatment and to expand government-funded clinics to treat those with HIV infection (Arno et al., 1989; Francis et al., 1989), which would inevitably result in the creation of records on a growing number of infected individuals, regardless of whether states adopted mandatory reporting requirements. Although reporting of HIV-infected individuals is still not widespread in the United States, the move toward early clinical intervention may be ultimately incompatible with the preservation of anonymity, so crucial to testing programs in the epidemic's early years. Partner Notification and Contact Tracing The move toward named reporting was only partly based on the argument that state health departments needed the names of individuals to ensure adequate clinical follow-up. Equally important was the assertion from
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The Social Impact of Aids in the United States public health officials that effective contact tracing, now more critical than ever because of the potential of early clinical intervention, could be undertaken only if those with HIV infection, but who were not yet diagnosed as having AIDS, could be encouraged to identify their sexual and needle-sharing partners. Despite the central and well-established role of contact tracing in venereal disease control, the notification of sexual and needle-sharing partners in the context of AIDS had been a source of ongoing conflict between gay groups and civil liberties organizations, on one hand, and many public health officials, on the other hand (Potterat et al., 1989). Contact tracing was always predicated on the willingness of those with sexually transmitted diseases to provide public health workers with the names of their partners in exchange for a promise of anonymity, and it had been viewed by AIDS activists as a threat to confidentiality and as a potentially coercive intervention. Indeed, opponents of contact tracing, some of whom were deeply involved in AIDS policy formulation, typically denounced it as ''mandatory." The debate over partner notification also led some officials and others to challenge the conventional wisdom that had dominated public health thinking for four decades: Was contact tracing an effective way of trying to control the spread of sexually transmitted diseases? Did changing patterns of sexuality, in particular, the increase among some populations of anonymous sexual encounters with a relatively large number of partners, render such efforts ineffective (Andrus et al., 1990)? With time and a better understanding of how contact tracing functioned in the context of sexually transmitted diseases, some of the most vocal opponents of tracing raised fewer concerns about it in principle and more concerns about the cost of so labor intensive an activity. In the late 1980s, support for voluntary contact tracing came from the Institute of Medicine (1988a), the Presidential Commission on the HIV Epidemic (1988), the American Medical Association (Abraham, 1988), and the American Bar Association (1989). The American Medical Association's support for tracing was justified by its executive director, James Sammons, as having "the potential in the heterosexual society to substantially reduce the proliferation and spread of AIDS" (quoted in Abraham, 1988:4). Most striking, however, was the fact that in 1990 a panel charged by the commissioner of health of New York City with the responsibility of making recommendations on partner notification endorsed such efforts as part of the city's overall AIDS strategy. It supported (without dissent) the use of public health workers to notify individuals placed at risk for HIV infection by their sexual and needle-sharing partners, despite the fact that the panel included representatives of a number of community-based gay organizations (New York Times, 1991). The CDC has been the most important organization in pressing for the adoption of contact-tracing programs at the state level, where all such programs
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The Social Impact of Aids in the United States are organized and funded (Toomey and Cates, 1989). Critically involved in the training of venereal disease workers and in the funding of local venereal disease programs, the CDC had from the outset urged the adoption of this standard public health approach to AIDS and HIV infection. In February 1988 the federal agency assumed a more aggressive posture, making the adoption of partner notification by the states a condition for the receipt of funds from its HIV Prevention Program (Centers for Disease Control, 1988). Despite such pressure, the response on the part of the states was variable. Those that were most heavily burdened by AIDS continued to favor programs that encouraged infected individuals to notify their partners themselves. Of the states that stressed the role of professional public health workers—the "provider referral" model—most tended to have relatively modest numbers of AIDS cases (Toomey and Cates, 1989). Thus, local epidemiologic factors as well as political forces continued to influence the course of public health policy. Confidentiality Versus the Physician's "Duty to Warn" Both the early and lingering resistance to partner notification can in part be explained by the confusion between the standard public health approach to controlling sexually transmitted diseases and policies and practices that are rooted in a very different tradition, one entailing a "duty to warn" or protect those who might be threatened by individuals with communicable conditions. In the early part of this century, courts and legislatures adopted legal norms that imposed a duty to inform on physicians who knew that their patients could place family members or neighbors in danger because of infectious diseases. Failure to do so exposed them to civil liability (Hermann, 1986-1987). With the decline of infectious diseases as a social threat by the mid-twentieth century, the "duty to inform" tradition had lost much of its significance. It was given new life, however, with the 1974 case of Tarasoff v. Regents of the University of California (17 C. 3d 425, 131 Cal. Rptr. 14, 551 P. 2d 334, 1976), which held that psychotherapists had a duty to exercise reasonable care to protect the identifiable potential victims of their patients' violent acts. Although some state courts have not accepted the Tarasoff doctrine, others have handed down rulings that limit the principle of the inviolability of physician-patient communications, holding that clinicians have either a duty to protect or warn identifiable individuals who might be harmed by their patients (Merton, 1982). It was that line of cases that set the stage for the debate over whether physicians could be held liable for failing to warn the partners of people infected with HIV who planned to act in a way that posed a risk of viral transmission.
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The Social Impact of Aids in the United States of the Cuban approach to AIDS (Bayer and Healton, 1989), which mandates the isolation of all persons infected with HIV—but because of fears that even a more limited recognition of the authority to isolate would lead to some intrusions on privacy and deprivations of freedom. Use of Quarantine Statutes Soon after he resigned as commissioner of health in New York City at the end of 1989, Stephen Joseph bluntly made the case for the careful exercise of the power of quarantine. He did so on the occasion of the continuing uproar surrounding the appointment of Woodrow Myers as his successor. Gay and civil liberties groups opposed Myers partly because he had supported quarantine legislation in Indiana and had reportedly exercised the authority then granted him under state law. They demanded that such policies never be pursued in New York. No such pledge could or should be made, stated Joseph in an editorial written for the New York Times (Joseph, 1990). Among his last formal acts had been the signing of a detention order for a woman with infectious tuberculosis because of her repeated unwillingness to take the medication that would render her noninfectious. In the editorial, Joseph (1990:A25) warned: It is virtually certain that at some point, a New York City Health Commissioner will be faced with an analogous situation concerning the transmission of the AIDS virus. When all lesser remedies have failed, can anyone doubt what would be the proper course of action for the Commissioner to take, faced with … an infected individual who knowingly and repeatedly sold his blood for transfusion. When and if a treatment became available that would render HIV-infected people less infectious, "would there not then be a clear obligation to take all reasonable measures to ensure that the infected take their medication, thus protecting others?" (Joseph, 1990:A25). These statements represented the traditional claims of public health practice. Although there was opposition to all efforts to bring AIDS within the scope of state quarantine statutes, more than a dozen states did so between 1987 and 1990.3 Many of them used the occasion to modernize their disease control laws to reflect contemporary constitutional standards that detail procedural guarantees and to require that restrictions on freedom represent the "least restrictive alternative" available to achieve a "compelling state interest." In this regard, a return to traditional public health did in fact produce an important modification in central elements of the tradition, namely, an incorporation of more contemporary standards of civil rights. Given both the new and old quarantine statutes, how frequently have states sought to impose public health restrictions on individuals because of their HIV-related behavior? Some notable instances have been reported in
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The Social Impact of Aids in the United States the media, but no systematic data have been published. A state-by-state survey conducted between June and November of 1990 by panel member Ronald Bayer found that more than 500 reports had been received by health departments regarding individuals whose behavior placed others at risk for HIV infection. Just over 350 formal investigations were undertaken to substantiate the accusations. The critical factor determining the level of reporting of "dangerous" AIDS-related behavior and the willingness to process such reports was the existence at the state level of formal mechanisms designed to respond. But in a number of states with a relatively large number of AIDS cases—California, New Jersey, and New York, for example—no such mechanism existed. Indeed, the vast majority of officially reported cases of "recalcitrant" behavior occurred in states with modest AIDS counts: Indiana, Minnesota, Missouri, Nevada, Oklahoma, and Washington. But even in those states that have sought to investigate reports about people whose behavior was thought to pose a social hazard, isolation was very rarely imposed, even for a brief period. More common was the decision to issue orders to "cease and desist'' from actions that would lead to HIV transmission. In contrast, between 1981 and 1990, 400 people were institutionalized on a compulsory basis because of their failure to comply with tuberculosis control requirements. Use of Criminal Statutes After an initial hesitation to use existing public health statutes that attach criminal penalties to knowing transmission of venereal disease, and some confusion over their applicability, states began to enact new legislation that criminalized behaviors linked to the spread of AIDS. This legislative activity coincided with political receptivity to extend the authority of public health officials to control individuals whose behavior posed a risk of HIV transmission. Such use of the criminal law was broadly endorsed by the Presidential Commission on the HIV Epidemic (1988). Between 1987 and 1989, 20 states enacted such statutes, almost all of which defined the proscribed acts as felonies, although older statutes usually treated knowing disease transmission as a misdemeanor. In addition, the Ryan White Comprehensive AIDS Resources Emergency Act of 1990 (P.L. 101-381) prohibited the Secretary of Health and Human Services from making a grant to a state unless it provides assurances that intentionally transmitting HIV is civilly and criminally actionable. This prohibition was put in the act in spite of a House committee report on the bill that acknowledged that virtually all states have available either AIDS-specific legislation that permits such prosecutions or broad statutory authority that would permit the prosecution of such individuals. In fact, aggressive prosecutors
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The Social Impact of Aids in the United States have relied on laws defining assaultive behavior and attempted murder to bring indictments even in the absence of AIDS-specific legislation. Any effort to determine the extent to which prosecutions for HIV-related acts have occurred must confront the difficulty of monitoring the activity of local courts when there is neither a guilty verdict nor an appeal to a higher state tribunal. One survey, however, which relied on newspaper accounts as well as official court reports, estimated that between 50 and 100 prosecutions had been initiated involving acts as diverse as spitting, biting, blood splattering, blood donation, and sexual intercourse with an unsuspecting partner (Gostin, 1990). Although small in number, criminal prosecutions have drawn great attention. In the vast majority of cases, there was either an acquittal or the prosecution was dropped, but in the small number of cases that produced guilty verdicts, some sentences were unusually harsh. In Nevada (where prostitution is legal and regulated), a woman was sentenced to 20 years imprisonment in 1989 under a statute that makes it a felony to solicit by anyone who tests positive for HIV (State v. Kearns, Nev. Dist. Ct., Clark Cty., No. 865848, March 9, 1989). In the same year, an Indiana appeals court upheld a conviction for attempted murder against a person who had splattered blood on emergency workers seeking to prevent him from committing suicide (Indiana v. Haines, 545 NE2d 834, Ind App 2d Dist. 1989). STATE AND LOCAL PUBLIC HEALTH PRACTICE In addition to the effect of AIDS on some traditional public health practices, the HIV/AIDS epidemic has had an impact on state and local public health departments in established program areas and on the creation of new areas of work for those departments. Infectious Disease Epidemiology Before the advent of the HIV epidemic, it was widely thought that infectious diseases had peaked in the United States (and other developed countries). Indeed, the field of infectious disease epidemiology was nearly moribund, and epidemiology had turned its attention to the chronic diseases that are the major cause of death in developed countries (e.g., cardiovascular disease, cancer). In addition, the field of health promotion and disease prevention, although growing, was largely directed toward behaviors that contribute to chronic diseases: some attention was being paid to pregnancy and prevention of sexually transmitted diseases, but the emphasis had turned toward nutrition, weight control, smoking cessation, and other activities more closely linked to the major noninfectious killers. The HIV epidemic renewed interest in the epidemiology of infectious diseases (see "Recruiting
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The Social Impact of Aids in the United States and Training Providers" in Chapter 3). More important, perhaps, it lent a special urgency to issues of disease prevention and behavior modification. The effect of the HIV epidemic on preventive public health has been in three main areas. First, it has heightened academic interest in, and awareness of, sexual activity as a vector for multiple diseases, including HIV and other sexually transmitted diseases. Thus, it has led to far more extensive study of the determinants of sexual behavior and variations by race, sex, geography, and educational status and to the determination of the effectiveness of different approaches changing individual behavior. Second, the HIV epidemic has brought a new generation of practitioners with diverse backgrounds into the field of health promotion: community activists, academics, and even advertising executives with little previous background in public health have been recruited to apply their particular expertise to the area, resulting in an increased integration of their perspectives. The urgent nature of this task has also led to a rise in the attention paid to preventive issues in existing medical and public health journals and to the creation of organizations, journals, and other forums focused on health promotion generally and AIDS risk reduction in particular. Third, the HIV epidemic has fostered and strengthened partnerships between departments of public health and community-based organizations. Such alliances were initially established because public health departments needed the assistance of groups that had the confidence of those hardest hit by HIV disease, particularly gay men. In the ensuing years, however, it has become clear that an additional reason for such alliances exists: the greater political acceptability of explicit sexual and drug education that is provided by independent organizations rather than by official agencies of government. Clinical Services Public health departments often serve as the "clinician of last resort" for people who lack adequate health insurance coverage. Clinics that are financed by or staffed and run by city, county, or state health departments have long provided treatment for gonorrhea, tuberculosis, and a variety of other usually communicable diseases, and, more recently, prenatal care for poor women. Such facilities can be categorical ones (e.g., tuberculosis, sexually transmitted disease, mental health, or prenatal care clinics) or more comprehensive (neighborhood health centers, primary care clinics, hospital-based clinics). HIV infection is medically relevant to many areas of clinical activity and thus has implications for services that must be provided. Primary care is a responsibility of many local health departments, either directly or indirectly. Most city and county departments fund and manage neighborhood health centers or primary care clinics or both. Furthermore,
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The Social Impact of Aids in the United States public hospitals are important sites for the care of indigent people. Because the role of publicly funded clinics is to serve poor patients—who are increasingly represented in the HIV epidemic—such facilities are logically a major provider of HIV clinical services. Similarly, prenatal care for poor or uninsured women is often provided by publicly funded facilities. Because of the 25-35 percent probability that the child of an HIV-infected woman will also be infected, such facilities have also become major sites for HIV counseling and testing. Sexually transmitted diseases (STDs) bear a special relationship to AIDS because people with such diseases may be biologically at higher risk to acquire or spread HIV infection and because, in an era of "safer sex," they give prima facie evidence of unsafe sexual behavior. STD clinics have become sites for intensified screening for HIV and referral for care. The epidemic has prompted efforts to provide a wider range of primary care services in these clinics and, increasingly, to initiate HIV-related research protocols there as well. Tuberculosis is a major cause of clinical disease among HIV-infected individuals, particularly among drug users, minorities, and the poor. It is of special concern because, unlike HIV, it can be spread by ordinary, nonintimate contact and because of the emergence of strains that are resistant to treatment by currently available drugs (Altman, 1992). Screening for tuberculosis has thus become an important part of HIV care, and screening for HIV is a crucial part of evaluation of patients with tuberculosis. The presence of high rates of tuberculosis in the HIV-infected population has also been a recurring theme among those who call for quarantine or greater restriction of the liberty of HIV-infected people. Methadone maintenance programs, formerly charged only with the dispensing of methadone to persons participating in drug treatment programs, are increasingly being urged to provide comprehensive primary care for their clients, largely because of the impact of HIV disease on the health of an otherwise generally healthy population. In sum, the HIV epidemic has increased the range of clinical responsibilities of public health agencies and further strained already burdened resources. Furthermore, public health authorities are faced with a return to the ethical dilemmas of the pre-antibiotic era that arise from their dual function as providers of clinical services to individual patients and as protectors of the health of the public. In the former role, patient confidentiality and deferral to patient autonomy are generally accepted as the overriding consideration; in the latter role, disclosure to state agencies and the right of coercive restraint play a role. These roles are not easy to reconcile. Expansion of the traditional responsibilities of categorical health programs is being contemplated on the basis of demonstrations of success in a few model programs. It remains to be seen whether successes in "leadingedge"
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The Social Impact of Aids in the United States programs can be used to transform more typical public health activities. In methadone maintenance, for instance, Montefiore Hospital in the Bronx has served as a model for the implementation of primary care, research, and other innovative programs. STD clinics in Baltimore are similarly a model for HIV testing and counseling, primary care, and clinical research in other STD clinics. But these programs received substantial benefits from their association with academic medical centers, subsidization of care through research grants, and other advantages that may be difficult to implement in other settings. It is not clear whether such efforts will be possible in an era of constrained public health resources. The dramatic rise in AIDS expenditures at every level of government, at a time of increasing budgetary problems, constrains the resources that can be devoted to traditional areas of public health activity. In many cities, departments complain that care for STDs is underfunded because of the need to spend money on AIDS. Planning and Financing Care Public health departments have traditionally been responsible for planning and financing certain health care services for the indigent. Nowhere has the effect of AIDS on public health been more profound than in the energy consumed in this task, particularly at the state and federal levels. A large share of the cost of providing AIDS clinical care has been borne by Medicaid, and this proportion is increasing as the epidemic becomes more and more concentrated among the poor, who are less likely to have private medical insurance (Green and Arno, 1990). But the historic bias of private and public health insurance on inpatient care and curative (rather than preventive) therapy creates large gaps in medical coverage, particularly as medical intervention for HIV-infected individuals begins earlier in the course of the disease. While "presumptive eligibility" for Medicaid for people with full-blown AIDS has paid for inpatient care and other needs of patients in the latter stages of HIV disease, a growing number of infected persons need outpatient monitoring and drugs. They often find themselves unable to pay for their care and ineligible for Medicaid. Bills to expand Medicaid eligibility to all persons infected with HIV were proposed but defeated in Congress in 1990. At the state level, public health departments are under considerable pressure to anticipate and plan for the specific health care needs of HIV-infected people, a task not traditionally carried out by these departments. Although most states have some form of "state health plan," they are not typically involved in detailed discussions of the types and amounts of clinical services required by people with specific diseases, such as lung cancer or diabetes. In the case of AIDS, however, most state health departments
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The Social Impact of Aids in the United States engaged community-based organizations, health care providers, academics, and others in discussions about such issues as the need for long-term or home care and the availability of physicians and dentists. One result of this involvement has been governmental sponsorship of professional education. The regional AIDS Education and Training Center program of the Health Resources and Services Administration (in the U.S. Department of Health and Human Services) is the major federal effort in this area, but many states also fund educational programs directed at professionals. Others have required documentation of HIV education as part of their general licensing and recertification processes. Finally, the allocation of federal funds for AIDS clinical care may be a forerunner of new forms of control and allocation of health care funding. The 1990 Ryan White AIDS Resources Emergency Act dictates the creation of an innovative form of community consortium to allocate the funding the bill provides. The consortium must include local government, community-based agencies, and providers. Although analogous groups were once created for the distribution of funds for family planning, they have largely atrophied and were never as broad as those contemplated by the Ryan White legislation. With the growing debate over the reorganization of U.S. health care and various proposals for a more unified system of insurance and allocations, such consortia may provide a model for a more general reform. CONCLUSIONS In the first years of the AIDS epidemic, U.S. public health officials were stunned by the sudden emergence of an unexpected lethal threat. Under those circumstances, they had to negotiate the course of the public health strategy with representatives of a well-organized gay community and their allies in the medical and political establishments. Only such a collaborative relationship, it was believed, would prevent the surfacing of unproductive antagonisms. Only such a process would permit officials to gain access to communities with historically rooted antagonisms to government agencies. As a consequence, many of the traditional practices of public health that might have been brought to bear on the epidemic were rejected in favor of an exceptionalist approach. As the first decade of the epidemic drew to an end and as gay organizations increasingly shifted their organizational efforts toward issues involving access to therapeutic trials and treatment, public health officials began to reassert their professional dominance over the policy process. In doing so, they began to rediscover the relevance of their professional traditions to the control of the AIDS epidemic, although considerable questions remained about whether traditional measures would have any demonstrable impact on the epidemic's course. The return to more traditional public health approaches
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The Social Impact of Aids in the United States has been fostered by changing perceptions of the dimensions of the threat posed by AIDS. Early fears that HIV infection might spread broadly in the population have proven unfounded. As the focus of public health concern has shifted from gay men, among whom the incidence of new HIV infections has remained low for the past several years, to poor black and Hispanic drug users and their sexual partners, the influence of those who have spoken on behalf of the former has begun to wane. Black and Hispanic drug users, however, not only lack the capacity to influence policy in the way that gay men did, but those who speak on their behalf often lack the singular commitment to privacy and consent that so characterized the gay organizations. And as it has become clear that initial estimates of the level of infection first put forth several years ago were too high, the willingness to reconsider traditional policies has increased. But most important in accounting for the changing course of public health policy has been the important advances in therapeutic prospects. The helplessness and fatalism of the early years has begun to wane, and a guarded optimism has begun to emerge. The prospects for better management of HIV-related opportunistic infections and the hopes of slowing the course of HIV progression itself through prophylaxis have increased the importance of early identification of those with HIV infection. That, in turn, has produced a willingness to consider traditional public health approaches to screening, reporting, and partner notification. Although HIV disease may not continue to be treated as an exceptional disease, the new perspectives on public health prompted by its emergence will not disappear. The emphasis on mass behavioral change through education that had begun prior to the AIDS epidemic will continue to be of critical importance. Even the most ardent advocates of the relevance of traditional public health practice, the strongest opponents of HIV exceptionalism, recognize that mass educational campaigns will remain the single most important element in the public health strategy to contain HIV infection. And much was learned in the first decade of the AIDS epidemic about how to mobilize an effective public health education campaign—about the importance of engaging those who speak on behalf of those most at risk in the process of fashioning such efforts. These lessons could be applied profitably to the patterns of morbidity and mortality that represent so much of the contemporary threat to the public health. In assessing the impact of AIDS on the practice of public health, it is important to remember that such practice entails not only education, surveillance, reporting, and other public health control measures, but also the delivery of primary health care services. State, county, and local public health programs have become, often by default, the providers of last resort for people with HIV disease who lack private insurance coverage. The inextricable link between HIV disease and other diseases and conditions
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The Social Impact of Aids in the United States prevalent in poor populations (e.g., drug addiction, tuberculosis, and sexually transmitted diseases) means that public health providers will face even greater challenges from the HIV epidemic in the 1990s. These challenges involve not only meeting the burden of growing caseloads, but also fashioning delivery systems that meet the many needs of people with HIV disease. The AIDS epidemic thus presents an opportunity and challenge for the revitalization of the practice of public health with regard to both infectious conditions and the chronic disorders that represent so much of the task of public health in the United States today (see Institute of Medicine, 1988b). NOTES 1. Phenylketonuria is an inborn error of metabolism, detectable by genetic screening and treatable with a diet low in phenylalanine. The diet is extremely unpleasant and can be toxic in children who are misdiagnosed. Nevertheless, a change in diet for children with true PKU (as opposed to other benign forms of hyperphenylalaninemia) can prevent mental retardation. For a discussion of the lessons of PKU for mandatory screening programs, see Hardy (1991:82-83). 2. New York State's highest court refused to designate HIV infection a communicable and sexually transmitted disease, a move that would have "trigger [ed] statutory provisions relating to isolation and quarantine, reporting, mandatory testing and contact tracing" (slip op. at 6). The court concluded that "designating HIV infection as a communicable or sexually transmitted disease would be detrimental to the public health …" (slip op. at 11) (New York State Society of Surgeons et al. v. David Alexrod, 1991). 3. Based on a review of all AIDS-related legislation in the files of the George Washington University Intergovernmental Health Policy Project, Washington, D.C. REFERENCES Abraham, L. (1988) AIDS contact tracing, prison test stir debate. American Medical News July 8-15:4. Altman, L.K. (1992) Top scientist warns tuberculosis could become major threat. New York Times February 11:B-6. American Bar Association (1989) Report from the House of Delegates, August 1989. Chicago: American Bar Association. American Bar Association (1990) Policy on AIDS. Chicago: American Bar Association. American Medical Association (1989) Report X: AMA HIV policy update. In AMA Proceedings of the House of Delegates. December 3-6, 43rd interim meeting. Chicago: American Medical Association. Andrus, J.K., D.W. Fleming, D.R. Harger, M.Y. Chin, D.V. Bennett, et al. (1990) Partner notification: can it control epidemic syphilis? Annals of Internal Medicine 112(7):539-543. Arno, P.S., D. Shenson, N.F. Siegel, P. Franks, and P.R. Lee (1989) Economic and policy implications of early intervention in HIV disease. Journal of the American Medical Association 262:1493-1498. Association of State and Territorial Health Officials, National Association of County Health Officials, U.S. Conference of Local Health Officers (1988) Guide to Public Health Practice: HIV Partner Notification Strategies. Washington, D.C.: Public Health Foundation.
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The Social Impact of Aids in the United States Barnes, M. (1989) Toward ghastly death: the censorship of AIDS education. Columbia Law Review 89:698-724. Barnes, M., N.A. Rango, G.R. Burke, and L.A. Chiarello (1991) The HIV-infected health care professional: employment policies and public health. Law, Medicine & Health Care 18:311-330. Bayer, R. (1991a) Private Acts, Social Consequences: AIDS and the Politics of Public Health. New Brunswick, N.J.: Rutgers University Press. Bayer, R. (1991b) Public health policy and the AIDS epidemic: an end to AIDS exceptionalism? New England Journal of Medicine 324:1500-1504. Bayer, R., and C. Healton (1989) Controlling AIDS in Cuba. New England Journal of Medicine 320:1022-1024. Burris, S. (1989) Rationality review and the politics of public health. Villanova Law Review 34:909-932. Centers for Disease Control (CDC) (1988) Cooperative agreements for Acquired Immunodeficiency Syndrome (AIDS) prevention and surveillance projects program announcements and notice of availability of funds for fiscal year 1988. Federal Register February 5, 53(24):3554-3558. Centers for Disease Control (CDC) (1990) Update: public health surveillance for HIV infection—United States, 1989 and 1990. Morbidity and Mortality Weekly Report 39:853, 859-861. Centers for Disease Control (CDC) (1991) Guidelines for prophylaxis against Pneumocystis carinii pneumonia for children infected with human immunodeficiency virus. Morbidity and Mortality Weekly Report 40(RR-2):1-13. Fox, D.M. (1986) From TB to AIDS: value conflicts in reporting disease. Hastings Center Report 16(6)(Suppl.):11-16. Francis, D.P., R.E. Anderson, M.E. Gorman, M. Fenstersheib, N.S. Padian, et al. (1989) Targeting AIDS prevention and treatment toward HIV-1-infected persons. Journal of the American Medical Association 262:2572-2576. Gostin, L.O. (1990) The AIDS litigation project: a national review of courts and human rights decisions. Part I: the social impact of AIDS. Journal of the American Medical Association 263:1461-1470. Green, J., and P.S. Arno (1990) The medicalization of AIDS. Trends in the financing of HIV-related medical case. Journal of the American Medical Association 264:1261-1266. Hardy, L.M., ed. (1991) HIV Screening of Pregnant Women and Newborns . Committee on Prenatal and Newborn Screening for HIV Infection, Institute of Medicine. Washington, D.C.: National Academy Press. Hermann, D.H.J. (1986-1987) AIDS: malpractice and transmission liability. University of Colorado Law Review 58:63-107. Institute of Medicine (1988a) Confronting AIDS: Update 1988. Washington, D.C.: National Academy Press. Institute of Medicine (1988b) The Future of Public Health. Committee for the Study of the Future of Public Health. Washington, D.C.: National Academy Press. Intergovernmental Health Policy Project (1989) HIV reporting in the states. Intergovernmental AIDS Reports 2(5):1-3. Joseph, S.C. (1989) Remarks delivered at the Fifth International Conference on AIDS Plenary Program. Montreal, Canada. Joseph, S.C. (1990) Quarantine: sometimes a duty. New York Times February 10:A25. Kottow, M.H. (1986) Medical confidentiality: an intransigent and absolute obligation. Journal of Medical Ethics 12:117-122. Lambert, B. (1989) In shift, gay men's health group endorses testing for AIDS virus. New York Times August 16:A1.
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The Social Impact of Aids in the United States Lambert, B. (1990) AIDS policy dispute prompts a defense of a health official. New York Times January 12:28. Lewis, C.E., and K. Montgomery (1990) The HIV testing policies of U.S. hospitals. Journal of the American Medical Association 264:2764-2767. Merritt, D.J. (1986) Communicable disease and constitutional law: controlling AIDS. New York University Law Review 61:739-799. Merton, V. (1982) Confidentiality and the "dangerous" patient: implications of Tarasoff for psychiatrists and lawyers. Emory Law Journal 31:263-343. Moreno, J.D., and R. Bayer (1985) The limits of the ledger in public health promotion. Hastings Center Report 15:37-41. New York Times (1991) New York widens plan to warn of AIDS exposure. New York Times March 17:A21. Potterat, J.J., N.E. Spencer, D.E. Woodhouse, and J.B. Muth (1989) Partner notification in the control of human immunodeficiency virus infection. American Journal of Public Health 79:874-876. Presidential Commission on the Human Immunodeficiency Virus Epidemic (1988) Final Report. Washington, D.C.: U.S. Government Printing Office. Rhame, F.S., and D.G. Maki (1989) The case for wider use of testing for HIV infection. New England Journal of Medicine 320:1248-1254. Toomey, K.E., and W. Cates, Jr. (1989) Partner notification for the prevention of HIV infection. AIDS 3(Suppl. 1):57-62. U.S. Department of Health and Human Services (1991) Healthy People 2000: National Health Promotion and Disease Prevention Objectives. DHHS Pub. No. (PHS) 91-50212. Washington, D.C.: U.S. Government Printing Office.
Representative terms from entire chapter: