Entering the Second Decade:
The Politics of Prevention, the Politics of Neglect
Ronald Bayer
In 1991 the AIDS epidemic in the United States entered its second decade. More than 200,000 people have been diagnosed with AIDS; 140,000 are dead. It is a time of great promise but also of great risk. Remarkable advances have been made in the biomedical realm, and public policies have been designed to limit the spread of HIV infection and protect the rights of those who are infected or at risk of infection. These are singular accomplishments—all the more so since they have come as a consequence of intense political conflict, spurred by the demands of those who have borne the burden of disease and their allies. But these achievements also set the stage for new controversies in public health. The central political and ethical question of privacy, which was debated in the epidemic's first phase, has now been joined, although not displaced, by the question of equity. How America responds to the new issues concerning access to potentially life-prolonging therapies will have a profound impact on the shape and course of the epidemic in the next years. The situation will be far different in the Third World, where, because of the international maldistribution of professional and economic resources, access to new therapeutic regimes will be all but beyond reach. A single virus may thus create two very different epidemic patterns: one that permits increasingly effective clinical responses; another where men, women, and children continue to succumb, with an enormous toll in human suffering and social dislocation.
Inevitably, public policy will be affected by changing perceptions of the dimensions of the epidemic. Estimates of the number of infected
Reprinted with permission from Private Acts, Social Consequences: AIDS and the Politics of Public Health (New Brunswick, N.J.: Rutgers University Press, 1991).
individuals made in 1986 were, it is now clear, too high. Indeed, figures presented in late 1989 suggest that no more and perhaps fewer Americans were infected at that time than were assumed to be infected three years earlier.[1]
Centers for Disease Control, "CDC Fstimates of HIV Prevalence and Projected AIDS Cases: Summary of a Workshop, Oct 31-Nov 1, 1989," Morbidity and Mortality Weekly Report 39 (February 23, 1990): 110-19.
Equally important, epidemiological trends first noticed in the last years of the 1980s made it clear that, although heterosexual transmission of HIV continues to occur, the spread of infection has remained largely confined to those groups first identified as being at increased risk. The prospect of a rapid spread of HIV among the general population, which served as a specter haunting public policy and which fueled public anxieties, is not currently considered likely. Gay and bisexual men, intravenous drug users, their typically female sexual partners, and their offspring will continue to bear the epidemic's greatest burden of disease, suffering, and death. Sexual orientation and the lines of social cleavage that tend to limit sexual contact between the poor, urban underclass and the broader society have served thus far to contain the epidemic.Because the epidemic of HIV infection appeared less threatening than was previously thought, many people feared that only limited resources would be allocated to it—at a time when major infusions of funds for care would be needed. It is in that light that Michael Fumento's Myth of Heterosexual AIDS must be read; its polemical thrust is directed at those who appealed for resources to meet the challenge of AIDS.[2]
Michael Fumento, The Myth of Heterosexual AIDS (New York: Basic Books, 1990).
The angry reaction from gay groups such as the Gay Men's Health Crisis and especially ACT UP, in the summer of 1988, when the New York City Health Department revised downward by 50 percent the estimated number of infected New Yorkers, must also be understood in that light.[3]Expert Panel on HIV Seroprevalence Fstimates and AIDS Cases Projection Methodologies, Report (New York: City Health Department, February 15, 1989); Richard Dunne, letter to Stephen Joseph, August 18, 1988.
At the same time, the increasing association of AIDS with the underclass may fundamentally weaken the political alliance that underlay the voluntarist consensus which dominated public discourse about prevention policies in the epidemic's first decade.Even more critical to an understanding of the evolving political debates about AIDS and the public health are recent clinical developments. The therapeutic impotence of the early years of the epidemic has begun to give way to a sober yet more optimistic perspective. Progress has been made not only in meeting the challenge posed by opportunistic infections but also in slowing the progression of disease in those who are infected but still asymptomatic. Although it is still too soon to speak of AIDS itself as a chronic disease, HIV infection will increasingly require the kind of long-term clinical management associated with such conditions. As a consequence, public health officials are no longer intent
solely on preventing the further spread of infection; rather, they face the task of creating the necessary medical infrastructure to ensure that the million or more infected Americans are provided with appropriate clinical supervision. It is within this changed context that screening, reporting, and partner notification—issues that figured prominently in the early days of AIDS prevention—have taken on new significance and have provoked fresh debates about the appropriate role of the state. The traditional approaches of public health officials to epidemic disease, approaches that were vigorously challenged in the early and mid-1980s, have found new support from those who had previously found them inadequate or ethically unacceptable.
No issue has consumed more attention in the debates over public policy and AIDS than the use of the antibody test to identify those infected with HIV. In the period following the test's development, controversy centered on the role of testing in supporting the radical modifications of behavior that were universally deemed critical to altering the epidemic's course. Out of these 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. Despite that standard, and the carefully defined, though always contested, exceptions to its scope, many clinicians and hospitals undertook surreptitious testing of patients, justifying their practices by the belief that the protection of health care workers and sound diagnostic work required such screening.[4]
New York Times, February 17, 1990, p. 1.
In Illinois organized medicine went further, successfully pressing the governor and legislature, despite opposition from the state's chief health official, to permit testing at the discretion of the clinician.[5]Windy City Times, September 8, 1988, p. 1.
In New York State four medical societies, including the New York Medical Society, unsuccessfully brought the commissioner of health to court because of his failure to designate AIDS a sexually transmitted disease, a determination that would have permitted testing without consent.[6]New York State Society of Surgeons, New York State Society of Orthopaedic Surgeons, New York State Society of Obstetricians and Gynecologists, and the Medical Society of New York v. David Axelrod, New York State Court of Appeals, May 2, 1991.
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, which had formerly opposed testing, now began to encourage people in high-risk groups to determine whether or not they were infected.[7]
PI Perspective, April 1988, p. 7; New York Times, August 16, 1989, p. 1.
Physicians pressed more vigorously for the "return of AIDS to the medicalmainstream," so that testing might be routinely done under conditions of presumed consent.[8]
Frank S. Rhame and Dennis A. Maki, "The Case for Wider Use of Testing for HIV Infection," New England Journal of Medicine 320 (May 11, 1989): 1248-54.
Public health officials—most notably in New York and New Jersey, which had borne much of the burden of AIDS—launched aggressive testing campaigns.Although physicians and public health officials have typically avoided the language of compulsion, stressing instead routine testing, the threat of coercion loomed before gay activists, their liberal political allies, and proponents of civil liberties. So, too, did the risk of increased stigmatization and discrimination.
With the promise of early therapeutic intervention came the unraveling of the alliances that had been forged in the first phase of the epidemic. A powerful movement emerged, supported by obstetricians and pediatricians, for the routine screening of pregnant women who could transmit HIV to their offspring and the mandatory screening of infants at high risk for infection. The public health practice of testing for syphilis and hepatitis B served as a model for the testing of pregnant women; the widescale and broadly accepted tradition of screening for congenital conditions such as phenylketonuria (PKU) served as the standard for the screening of infants. The promise—with little evidentiary base—that early intervention might protect the fetus or at least enhance the life prospects of babies at risk for HIV infection had begun to override ethical concerns about the coercive identification of infected women, most of whom were black or Hispanic, as well as about the potential burdens of exclusion from housing, social services, and health care itself that might be imposed on those so identified.
The erosion of the alliance that had resisted the application of traditional public health practices could be seen also in the shifting trends on the issue of reporting the names of those infected with HIV to confidential public health department registries. Such reporting requirements had been fiercely resisted by gay groups and their allies because of concerns about privacy and confidentiality. The requirements also had been opposed by public health officials in areas with large numbers of AIDS cases because of the potential impact on the willingness of individuals voluntarily to seek HIV testing and counseling. As a consequence, the reporting requirements had become policy in only a handful of states. It was thus a great setback for those who opposed reporting that the Presidential Commission on the Human Immunodeficiency Epidemic—appointed by President Reagan and skillfully chaired by Admiral James D. Watkins—urged in its mid-1988 final report the universal adoption of a policy first chosen by Colorado three years earlier.[9]
Presidential Commission on the Human Immunodeficiency Virus Epidemic, Report (Washington, D.C.: U.S. Government Printing Office, 1988), p. 76.
That decision was all the more distressing since much of the commission's final report contained proposals broadly applauded by liberal critics of the Reagan administration's failure to commit either sufficient resources or political leadership to the struggle against AIDS.
Ultimately more significant were the fissures that had begun to appear in the alliance opposing 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 brought by the medical societies that sought to compel the commissioner of health to declare AIDS a sexually transmitted disease demanded that HIV infection be made a reportable condition.[10]
Society of Surgeons et al. v. Axelrod.
What made the (ultimately unsuccessful) suit so remarkable was the posture of the opposing sides. Historically, clinicians had resisted efforts by public health officials to require the reporting by name of individuals with infectious diseases, arguing that such policies represented an intrusion upon the doctor-patient relationship. In this instance the representatives of clinical medicine were asserting that reporting was critical to the public health while the state's chief health official resisted such a perspective. That apparent paradox can be explained only by the unique political alliances that had been created early in the epidemic between 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 "shift toward a disease control approach to HIV infection along the lines of classic tuberculosis practices."[11]
Stephen C. Joseph, "Remarks at the Fifth International Conference on AIDS," Montreal, June 5, 1989, mimeo.
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 the newly elected mayor, David Dinkins, selected Woodrow Myers, formerly commissioner of health in Indiana, to replace Joseph, his appointment was almost aborted, in part because he had supported named reporting.[12]New York Times, January 19, 1990, p. B1.
The festering debate was ended only by a political decision on the part of the mayor, who had drawn heavily on support within the gay community, to stand by his appointment while promising that there would be no named reporting in New York.In New Jersey, which shared with New York a relatively high level
of HIV infection, the commissioner of health also supported named reporting, but in that case the politics surrounding the issue 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.[13]
Newark Star Ledger, January 5, 1990.
New Jersey simply exemplified a national trend. For, 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.[14]Intergovernmental Health Policy Project, "HIV Reporting in the States," Intergovernmental AIDS Reports, November-December 1989.
Finally, in late 1990 the House of Delegates of the American Medical Association went on record as supporting named reporting. So, too, did the CDC, if in a somewhat circumspect fashion.[15]CDC, "Update: Public Health Suveillance for HIV Infection—United States, 1989 and 1990," Morbidity and Mortality Weekly Report 39 (1990): 860.
And always the arguments were the same. New therapeutic possibilities provided the warrant for reestablishing a standard of traditional public health practice.Ironically, pressure to extend the provision of Medicaid coverage for early treatment and to expand government-funded clinics to treat those with HIV infection will inevitably result in the creation of records on growing numbers of infected individuals regardless of whether states adopt mandatory reporting requirements. The move toward early clinical intervention is, then, incompatible with the preservation of anonymity. As a result, creating and enforcing regimes to protect the rights of infected persons from acts of discrimination will assume greater importance than in the epidemic's first years. In this context state-level protections for individuals with HIV infection will be crucial. But even more important will be the enforcement of the Americans with Disabilities Act by the Congress, legislation that provides those with HIV infection rights extended to those with other impairments.
The move toward reporting was linked only in part to the argument that state health departments needed the names of individuals to ensure adequate clinical follow-up. Also important was the assertion from public health officials that effective contact tracing, now more critical than ever because of the need for early clinical intervention, could be undertaken only if those with HIV infection, but not yet diagnosed as having AIDS, could be interviewed. Despite its central and well-established role in venereal disease control, the notification of the 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 the one hand, and public health officials who had proposed such a strategy in the early years of the epidemic, on the other. This standard disease control measure had always been 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. AIDS activists had viewed contact tracing as a threat to confidentiality and as a potentially coercive intervention. Indeed, opponents of contact tracing typically denounced it as "mandatory."
With time and a better understanding of how contact tracing functions in the context of sexually transmitted diseases, some of the most vocal opponents of tracing yielded their principled opposition, at least in private meetings and discussions, and instead centered their concerns on the cost of so labor-intensive an intervention. Support for voluntary contact tracing was ultimately to come from the Institute of Medicine and the National Academy of Sciences, the Presidential Commission on the HIV Epidemic, the American Bar Association, and the American Medical Association.[16]
Institute of Medicine and National Academy of Sciences, Confronting AIDS: Update 1988 (Washington, D.C.: National Academy Press, 1988), p. 82; Presidential Commission, Report, p. 76; American Bar Association, AIDS Coordinating Committee, Policy on AIDS (Washington, D.C.: American Bar Association, 1989); American Medical News, July 8-15, 1988, p. 4.
Indeed, it was the AMA's support for tracing—justified by its executive director, James Sammons, as having "the potential in the heterosexual society to substantially reduce the proliferation and spread of AIDS"—that provided the grounds for the group's support for mandatory HIV reporting.[17]American Medical News, July 8-15, 1988, p. 4.
Most important in pressing for the adoption of contact-tracing programs at the state level, where all such programs are organized and funded, has been the Centers for Disease Control.[18]
Kathleen Toomey and Willard Cates, "Partner Notification for the Prevention of HIV Infection," AIDS, 39, Suppl. 1 (1989): 557-62.
Critically involved in the training of workers in SDS clinics 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 of 1988 the federal agency took on 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.[19]Federal Register 53, no. 24 (February 1988): 3554.
Despite such pressure the response on the part of the states was variable. Those most heavily burdened by AIDS continued to favor programs that encouraged infected individuals to notify their own partners. Of the states that stressed the role of professional public health workers—the "provider referral" model—most tended to have relatively modest AIDS case counts.[20]Kathleen Toomey, "Parener Notification for HIV Prevention: Current State Programs and Policies in the United States," paper presented at the Fifth International AIDS Conference, Montreal, June 7, 1989.
Thus, local epidemiological factors as well as political forces continued to influence the course of public health policy. But the trend was unmistakable, and in 1991 a New York City Health Department panel was constituted to examine the issue of partner notification. The panel—which included representatives of community-based organizations such as the Gay Men's Health Crisis, as well as experts in medical ethics—gave its support, in principle, to an expanded program of partner notification.In part, both the early and the lingering resistance to partner notification can be explained by the conflation of the standard public health approach to sexually transmitted disease control with policies and practices that are rooted in a very different tradition, 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 on those with infectious diseases a duty to inform those whom they might place at risk through contact. Physicians who knew that their patients could place family members or neighbors in danger could be held civilly liable for failure to warn those at risk.[21]
Donald H. J. Hernann, "AIDS: Malpractice and Transmission Liability," University of Colorado Law Review 58 (1986-87): 63-107.
With the decline of infectious disease as a social threat, this legal tradition fell into disuse. It was given new life, however, with the 1976 case of Tarasoff v. Regents of California , in which the court held that psychotherapists have a duty to protect the identifiable potential victims of their patients' violent acts. While some state courts have rejected Tarasoff , others have handed down rulings that placed limits on the principle of the inviolability of physician-patient communications, holding that clinicians have a duty to protect or warn identifiable individuals who might be harmed by those under their treatment.[22]Vanessa Merton, "Confidentiality and the 'Dangerous' Patient: Implications of Tarasoff for Psychiatrists and Lawyers," Emory Law Journal 31 (Spring 1982): 263-343.
That line of cases set the stage for the debate over whether physicians could be held liable for failing to warn the partners of those who, though infected with HIV, planned to act in a way that posed a risk of viral transmission.The early and strict confidentiality rules surrounding HIV screening and medical records all but precluded physicians from assuming their Tarasoff -like duties, especially in New York and California. In recent years the recognition that such limitations placed physicians in a position that sometimes violated professional ethical norms, the realization that some patients could pose a grave threat to unsuspecting partners, and the increasing importance of early therapeutic intervention have led to modifications of early confidentiality restrictions. Such modifications are often opposed on principled grounds by those who believe that physician-patient communications should never be violated and by those who argue that such breaches of confidentiality would have the counterproductive consequence of reducing patient candor, thus limiting the capacity of clinicians to effectively counsel and persuade individuals who might harm their partners. At the same time, the modifications in the standard of strict confidentiality have been given strong support in a number of state legislatures, and by the American Medical Association and the Association of State and Territorial Health Officials.[23]
Board of Trustees, American Medical Association, December 1989; Association of State and Territorial Health Officials, National Association of County Health Officials, and U.S. Conference of Local Health Officers, Guide to Public Health Practice: HIV Partner Notification Strategies (Washington, D.C.: Public Health Foundation, 1988).
As of 1990 no state had imposed on physicians a duty to warn unsuspecting partners. But about a dozen had adopted legislation granting physicians a "privilege to warn or inform," thus freeing physicians from liability for either warning or not warning those at risk.[24]
Intergovernmental Health Policy Project, "1989 Legislative Overview," Intergovernmental AIDS Reports 2 (January 1990): 1-3.
Reflecting profound concerns about the centrality of confidentiality to the struggle against AIDS, New York's 1989 confidentiality statute went further and, borrowing from the tradition of contact tracing, stipulated that the identity of the threatening party not be revealed to those being warned.[25]New York State, Public Health Law, Article 27-F.
To those—the American Bar Association, for example[26]American Bar Association, House of Delegates, Report No. 124 (Washington, D.C.: American Bar Association, February 12-13, 1990).
—who believed that adequate warnings require the identification of the infected party to the individuals placed at risk, such compromises represented an undue limitation imposed by a mistaken interpretation of the ethics of confidentiality.The question of how to respond to individuals whose behavior represents a threat to unknowing partners inevitably provoked continued discussion of the public health tradition of imposing restrictions on liberty in the name of communal welfare. The specter of quarantine has haunted all such discussions, not because there was any serious consideration in the United States of the Cuban approach to AIDS—which mandates the isolation of all persons infected with HIV[27]
Ronald Bayer and Cheryl Healton, "Controlling AIDS in Cuba," New England Journal of Medicine 320 (April 13, 1985): 1022-24.
—but because of fears that even a more limited recognition of the authority to quarantine would lead to egregious intrusions on privacy and invidiously imposed deprivations of freedom.In spite of fierce opposition to all such efforts, between 1987 and 1990 more than a dozen states had brought AIDS within the scope of their quarantine statutes. At the same time, many of these states modernized their disease control laws to reflect contemporary constitutional standards detailing procedural guarantees, and to require that restrictions on freedom represent the "least restrictive alternative" available to achieve a "compelling state interest."[28]
This conclusion is based on a review of all AIDS-related legislation in the files of the Intergovernmental Health Policy Project, Washington, D.C.
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, in part, 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 .[29]
New York Times, February 10, 1990, p. 25.
Among his last formal acts had been thesigning of a detention order for a woman with infectious tuberculosis because of her repeated unwillingness to take the medication that would render her noninfectious. "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 persons 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?" In characteristically vigorous form—but in language emboldened by the freedom to speak without the constraints of office—Joseph reasserted the traditional claims of public health. His boldness was reinforced by his belief that with advances in therapy AIDS and its control would follow the model established by earlier infectious diseases.
With the exception of the few notable cases that have received press attention, there is no well-documented review of the extent to which newly revised quarantine statutes have been applied to the AIDS epidemic. There are, however, data to suggest that the power vested in public health officials by such laws has been used more often to warn those whose behavior has posed a risk of HIV transmission than to incarcerate. But in any case the numbers have been small. It is clear, therefore, that the enactment of revised quarantine laws has been responsive to political pressures and the belief in the efficacy of symbolic bulwarks.
The enactment of statutes criminalizing behaviors linked to the spread of AIDS has paralleled the political receptivity to laws extending the authority of public health officials to control individuals whose behavior poses a risk of HIV transmission. Such use of the criminal law, broadly endorsed by the Presidential Commission on the HIV Epidemic, called upon a tradition of state enactments that made the knowing transmission of venereal disease a crime.[30]
Presidential Commission, Report, pp. 130-31.
Though they almost never were enforced, the existence of these older laws served as a rationale for new legislative initiatives. Between 1987 and 1989 twenty states enacted such statutes, the vast majority of which defined the proscribed acts as felonies despite the fact that older statutes typically treated knowing transmission as a misdemeanor.[31]This information is derived from a review of all AIDS-related legislation in the files of the Intergovernmental Health Policy Project, Washington, D.C. See, generally, Martha A. Field and Kathleen M. Sullivan, "AIDS and the Criminal Law," Law, Medicine and Health Care 15 (Summer 1987): 46-60.
Moreover, aggressive prosecutors 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, relying on newspaper accounts as well as official court reports, estimated that between fifty and one hundred prosecutions had been initiated involving acts as diverse as spitting, biting, blood splattering, blood donation, and sexual intercourse with an unsuspecting partner.[32]
Lawrence O. Gostin, "The AIDS Litigation Project: A National Review of Court and Human Rights Commission Decisions, Part 1: The Social Impact of AIDS," Journal of the American Medical Association 263 (April 11, 1990): 1963.
Though small in number, these cases have drawn great attention. In the vast majority either the defendant was acquitted or the prosecution was dropped. In the small number of cases that produced guilty verdicts, however, there have been some unusually harsh sentences. In Nevada, where prostitution is both legal and regulated, a woman was sentenced to twenty years' imprisonment in 1989 under a statute that made solicitation by those who tested positive for HIV a felony. In the same year, an Indiana appeals court upheld a conviction for attempted murder against an individual who had splattered blood on emergency workers seeking to prevent him from committing suicide.[33]Larry Gostin, "The Politics of AIDS: Compulsory State Powers, Public Health, Civil Liberties," Ohio State Law Journal 49 (1989): 1041.
Whatever the allure of such measures and of the rediscovery of traditional public health approaches in the effort to combat the spread of HIV infection, it has remained clear that the AIDS epidemic will be stemmed only when radical voluntary changes in behavior are made and sustained. Educational campaigns and counseling programs, most effectively undertaken by groups linked to the populations at risk, have remained the centerpiece of that preventive effort. Such efforts are still limited by moralistic trends in American society, and especially by those reflecting the abhorrence of homosexuality. The most striking failure in the preventive realm, however, is rooted in the unwillingness to commit the resources necessary for the provision of drug abuse treatment.
The dimensions of that failure were underscored in the 1988 preliminary report of the Presidential Commission on the HIV Epidemic.[34]
New York Times, February 25, 1988, p. 1.
A vast expansion in government efforts was needed. One and a half billion dollars a year would be necessary for drug abuse treatment and education. Only such an investment could make possible the provision of immediate treatment to all drug users who might seek such help. For the Reagan administration, which had placed its emphasis on a moral appeal to abstinence and which had entertained the idea of a return to harsh street-level enforcement of drug use and possession statutes, the call for the massive funding of drug abuse treatment programs must have seemed the siren call of a discredited liberalism. For those whowere all too familiar with the inadequacy of available services, and the difficulties that would follow even if there were a commitment of resources, the commission's declaration provided some reason for hope.
The call for greater attention to the problem of drug abuse in the light of the AIDS epidemic was repeated by the Institute of Medicine and the National Academy of Sciences. In the 1988 update to its earlier report, Confronting AIDS , the IOM-NAS painted a bleak picture linking intravenous drug use, heterosexual transmission, and the birth of infants with HIV infection. "The Committee believes that the gross inadequacy of federal efforts to reduce HIV transmission among IV drug users, when considered in relation to the scope and implications of such transmission, is now the most serious deficiency in current efforts to control HIV infection in the United States."[35]
Institute of Medicine and National Academy of Sciences, Confronting AIDS: Update 1988, p. 84.
Relying on the report of the Presidential Commission, the IOM-NAS also called for an annual expenditure of $1.5 billion. But despite these appeals, little has been done. In its first report to President George Bush, issued in December 1989, the National Commission on Acquired Immune Deficiency Syndrome lamented the failure of the White House National Drug Control Strategy to give appropriate attention to AIDS. Like its predecessor, the National Commission—chaired by June Osborn, a well-known critic of federal AIDS policy, and vice-chaired by David Rogers, a persistent voice for increased federal support to the cities most severely affected by the epidemic—called for the availability of treatment "on request" for all drug users.[36]National Commission on Acquired Immune Deficiency Syndrome, Report Number One (Washington, D.C.: U.S. Government Printing Office, December 5, 1989), mimeo.
Concern about budgetary deficits, ten years of ideological opposition to welfare state—like programs by conservative national administrations, and the absence of a strong political constituency capable of effectively clamoring for the needs of the underclass have resulted in the politics of neglect. This context helps to explain why black and Hispanic community leaders are opposed to the halfway measures of needle exchange and education about the use of bleach to cleanse drug injection equipment.[37]
Harlan Dalton, "AIDS in Blackface," Daedalus 118 (Summer 1989): 205-28.
In the absence of a strong commitment to treatment, such measures appear to write off the needs of the poor. Thus, there has emerged the tragic alliance of the moralistic right and those who speak in the name of the dispossessed. It was the first black commissioner of health in New York City, acting at the behest of the city's first black mayor, who terminated a small and politically hobbled needle exchange program soon after assuming office.[38]New York Times, February 14, 1990, p. B1.
More stunning, the commissioner sought to cancel a municipal contract that funded a community-basedgroup to provide drug users with bleach and education about how to sterilize injection equipment.[39]
AMA News, May 25, 1990, p. 5.
The failure to fund drug abuse services was but a portion of a much deeper problem: the failure of the federal government to plan for and assist those localities that were compelled to bear the burden of providing care for large numbers of patients with AIDS. And such patients were but a fraction of those who would increasingly be defined as in need of care. In mid-1989 the Public Health Service announced that chemoprophylaxis could dramatically affect the likelihood of developing Pneumocystis carinii pneumonia.[40]
Public Health Service, "Guidelines for Prophylaxis against Pneumocystis Carinii Pneumonia for Persons Infected with Human Immunodeficiency Virus," Morbidity and Mortality Weekly Report, Suppl. 5, June 16, 1989.
Soon thereafter, clinical investigators announced that the use of AZT could retard the onset of disease in asymptomatic individuals whose immune systems had already begun to show the impact of HIV infection.[41]Paul Volberding et al., "Zidovudine in Asymptomatic Human Immunodeficiency Virus Infection: A Controlled Trial in Persons with Fewer Than 500 CDR-Positive Cells per Cubic Millileter," New England Journal of Medicine 332 (April 5, 1990): 941-49.
Writing in the Journal of the American Medical Association , researchers predicted that "rather than a fulminant disease treated primarily inside the hospital, the disease will become a largely chronic condition requiring years of outpatient monitoring and pharmacologic intervention."[42]Peter S. Arno et al., "Economic and Policy Implications of Early Intervention in HIV Disease," Journal of the American Medical Association 264 (September 15, 1990): 1494.
To meet the challenge of chronic HIV infection, it would be necessary to create and fund an infrastructure capable of providing ongoing clinical services to more than half of those with HIV infection. Some predicted that such care soon would be necessary for a million individuals.Here, then, was a paradox not new to the American health care system. Extraordinary advances in medicine must inevitably confront the social reality of the most inequitable system of medical care among advanced democratic societies. Thirty to forty million Americans have no health insurance at all. Of those who are insured, many are inadequately protected. Virtually the whole cost of prescription drugs must be borne by those for whom they are prescribed. Could such a health care system meet the challenge of providing between five hundred thousand and one million persons, many of whom are impoverished, with the outpatient clinical services they would need and with the expensive drugs they would require? Would it be possible for a health care system so fundamentally unjust to fashion a just response to those infected with HIV? Before these questions the earlier important debates about discrimination by private medical insurers paled.
Emergency federal programs to assist the states in paying the cost of AZT for those without insurance, Medicaid reimbursement policies, and a host of patchwork programs in the states provided some relief but were clearly inadequate.[43]
Intergovernmental Health Policy Project, "AZT: Who Will Pay?" Intergovernmental AIDS Reports 2 (May-June 1989): 4-5; Intergovernmental Health Policy Project, "State Financing for AIDS: Options and Trends," Intergovernmental AIDS Reports 3 (March-April 1990): 1-8, 12.
In its December 1989 report to the president,the National Commission on Acquired Immune Deficiency Syndrome warned that medical breakthroughs would "mean little unless the health care system can incorporate them and make them accessible to people in need."[44]
National Commission, Report Number One.
The existence of a medically disenfranchised class meant that, for many, access to care was almost solely through the "emergency room door of one of the few hospitals in the community that treats people with HIV infection and AIDS." Hardly the foundation for the kind of care HIV infection would require in the 1990s.These were the conditions under which ACT UP, which had rejected conventional political styles of protest for the methods of direct action reminiscent of the 1960s, turned its attention to the shape of the American health care system, going beyond its earlier bold challenge to the bureaucratic structure of new drug development. It was the context in which President George Bush's first address on AIDS, in the spring of 1990, was greeted as hollow by many AIDS activists. No longer was it enough to declare that those who are ill have a right to be treated with "dignity, compassion, care and confidentiality and without discrimination."[45]
New York Newsday, March 30 1990, p. 1.
Federal exclusionary policies in the military, the Foreign Service, and the Job Corps, as well as restrictions on the rights of foreign travelers with HIV infection, made such a declaration seem less than honest. But equally as important was the failure to guarantee that those with HIV infection would have access to the full range of needed clinical and social services.The situation that prevailed in New York, the epicenter of the American AIDS epidemic, was extreme because of the existence of a number of concurrent sociomedical and economic crises, including drug abuse, homelessness, and dire fiscal conditions. Nevertheless, it revealed that a failure to commit sufficient resources, itself a consequence of federal default, could have catastrophic results—not only for those with HIV-related disorders and the poor, who are dependent on publicly provided medical services, but for the system of health care more generally.
As early as the spring of 1988, investigators writing in the Bulletin of the New York Academy of Medicine could assert that "to ignore the possibilities inherent in the empirical evidence available is to create a social calamity even greater than the one already perceived. … One can imagine bitter competition for hospital beds. … The AIDS epidemic threatens not only individual lives but the city's health care, education and research environment as well. The time is short, the need is great, and is likely to grow rapidly."[46]
Michael Alderman et al., "Predicting the Future of the AIDS Epidemic and Its Consequences for the Health Care System of New York City," Bulletin of the New York Academy of Medicine 64 (March 1988): 181.
Within a year three separatereports by public- or voluntary-sector groups detailed how far New York was from being able to meet the demands of the epidemic.[47]
New York City AIDS Task Force, Report (New York: AIDS Task Force, July 1989); Citizens Commission on AIDS, The Crisis in AIDS Care (New York: Citizens Commission, March 1989); Mayor's Task Force on AIDS, Assuring Care for New York City's AIDS Population (New York: Mayor's Task Force, March 1989).
Community-based organizations, typically within the gay community, had provided an extraordinary range of services to those with HIV infection and AIDS. They could not, however, meet the needs that public bodies and large private-sector agencies were responsible for meeting. Volunteerism was no substitute for the institutional response that was demanded. Three to five hundred new acute care hospital beds would be needed each year for five years in order to meet requirements of those who became ill. In addition, hundreds of nursing home beds and special housing units would be needed for those requiring less intensive medical care. The capital costs alone for meeting these demands would be over $700 million. And if only half of those who could benefit from ambulatory care for HIV infection were to seek it, the city's already overburdened clinic system would have to absorb an additional 800,000 visits a year. Commenting on the care and attention to detail revealed in each of the report projections, Kenneth Raske, president of the Greater New York Hospital Association, said, "This is the biggest amount of planning for an epidemic with the least amount of action to go along with it."[48]New York Times, April 23, 1989, p. E24.
It was not too soon to start thinking of worst-case scenarios.[49]
United Hospital Fund, "Presidents Letter," February 1990.
Middle-class patients together with their physicians might increasingly flee the city in search of medical care in the suburbs. If they remained, and were able to protect their own interests by insulating themselves from the critical shortage of hospital beds, those institutions forced to bear the burden of caring for the poor would be compelled to restrict even further access to inpatient care for "elective" procedures. While middle-class patients would continue to receive increasingly effective outpatient care from their overworked physicians, the poor would face growing delays and waiting lists as they sought out the benefits of early therapeutic intervention. Many, discouraged, would simply not seek care at all.Shortages would impose the need for rationing, and in the political economy of a city such as New York competition among the desperate would ensue. In what Bruce Vladek, president of the United Hospital Fund, termed the "calculus of misery," it would become increasingly necessary to choose between AIDS cases and the frail elderly for admission to nursing homes; between single adults with AIDS and homeless families with young children for access to newly renovated apartments;
between children and homeless persons dying of AIDS for access to transitional shelter; between HIV-infected pregnant women and women not yet infected for admission to drug abuse treatment programs.
The looming crisis in health care for those with HIV disease set the stage for congressional action that could scarcely have been imagined a short time earlier. Such action was the fruit of dogged efforts on the part of AIDS activists, their allies, and some political leaders from the cities and states that had borne the disproportionate share of AIDS cases. In the winter of 1990 Senator Edward Kennedy, the exemplar of Democratic party liberalism, and Senator Orrin Hatch, a Republican whose stance on abortion often cast him in the role of a conservative, jointly sponsored legislation—the Comprehensive AIDS Resource Emergency Act of 1990—that would provide a major infusion of federal assistance to those localities most severely burdened by AIDS. As the government had responded to natural disasters, the Kennedy-Hatch Bill asked it to respond to the medical disaster of AIDS. "The Human Immunodeficiency Virus constitutes a crisis as devastating as an earthquake, flood or drought. Indeed, the death toll of the unfolding AIDS tragedy is already a hundredfold greater than any natural disaster to strike our nation in this century."[50]
Senator Edward Kennedy Letter, February 1990, mimeo.
As remarkable as the joint sponsorship of this legislation, which promised to provide $2.9 billion over five years in a complex political formula to the cities and states most severely struck by AIDS, was the overwhelming support the legislation received in the Senate, where the vote was 95–4.[51]
New York Times, May 12, 1990, p. B10.
When similar legislation, with even greater resource commitments, was voted on by the House of Representatives, the vote was 408–14.[52]New York Times, June 12, 1990, p. B9.
However late in coming, this legislation repreented on both symbolic and practical levels an important act of national solidarity. But the hopes of early summer were dashed by the fall, when the Congress, confronted with a severe budgetary crisis, slashed funds for the now-renamed Ryan White Act. What allocations will be made in successive years cannot be foretold. It is certain, however, that such an emergency act cannot be a substitute for fundamental changes in the organization and financing of health care—changes that will be required by the chronic management of the medical and social needs of all HIV-infected persons at a moment when many other medical needs of the nation's poor remain unmet.
With the rapid development of therapies for HIV-related disease, the link between the provision of care and the strategy of prevention has
assumed critical importance.[53]
Donald Francis et al., "Targetting AIDS Prevention and Treatment toward HIV-Infected Persons: The Concept of Early Intervention," Journal of the American Medical Association 262 (November 10, 1989): 2572-76.
Public health officials have used the occasion of new therapeutic prospects as a justification for rethinking policies adopted in the epidemic's first years. But the prospect of new therapies is not enough. If lives are to be prolonged, and if the public health goal of preventing the further spread of HIV infection is to be achieved, these therapies must be available to those who need them. If those with HIV infection can receive ongoing clinical care, behavioral changes can be encouraged, supported, and sustained. A failure to provide care and counseling—especially to the poor, among whom intravenous drug use plays a critical role in HIV transmission—will entail not only a sentence of needlessly foreshortened life but a lost opportunity to intervene in the epidemic's epidemiological course.New therapeutic possibilities made possible by scientific advances create the conditions for establishing a moral standard against which to judge the responses of the American policy to AIDS in the second decade. Unlike the Third World, where absolute scarcity imposes limits on what can be done to meet the challenge of HIV infection, in the United States restrictions on governmental efforts will be the consequence of social decisions. History will judge us by the choices we make at this moment, when the possibilities are greater than at any point since HIV first made its appearance.