The Social Impact of AIDS in the United States

The U.S. health care system stands alone among advanced industrial countries in lacking a national program to ensure universal or nearly universal health insurance coverage. The various public and private insurance plans and delivery systems (such as the Veterans Administration health system) reflect what John Iglehart (1992:962) characterizes as ''society's profound ambivalence about whether medical care for all is a social good, of which the costs should be borne by society, or a benefit that employers should purchase for employees and their dependents, with government insurance for people outside the work force." This ambivalence, and the resulting lack of any political consensus on how to finance and deliver health services, has resulted in an odd assortment of programs that does provide health insurance to about 85 percent of the population, but leaves some 36 million people uninsured. The uninsured are primarily full-time workers and their dependents who are employed in small firms at a low or the minimum wage. In addition, as health insurance premiums have escalated by 20 percent or more annually in recent years, employers have sought to contain costs by either reducing the value of the insurance coverage offered employees or by reducing the coverage provided for dependents. At the same time, insurance firms increasingly act unilaterally to avoid high (or "catastrophic") claims by dropping or limiting coverage for groups or individuals who are at high risk for serious illness. Thus, the security of health insurance even for the workers and their dependents who have coverage has deteriorated over the last decade.

Government spending on health services has increased continuously since the 1960s. The increases in spending have resulted primarily from inflation, technology changes, and increases in the volume of services that providers deliver; extensions of coverage to new population groups or improvements in benefits have accounted for a relatively minor proportion of the increase. In the last decade alone, federal health expenditures increased from 12 percent of the federal budget in 1980 to 15 percent in 1990. The increasing cost of Medicaid has resulted in severe problems for states and has occasioned difficult searches at the state level for means of containing (or shifting to the federal level) expenditures for health services.

The providers of health services—physicians, hospitals, other institutional and individual professions—are in a period of transition. The funds easily available for health care in the 1960s and 1970s, as Medicare, Medicaid, and private health insurance coverage paid charges as billed with few controls over services or rates, are now more constrained. Limits on Medicare and Medicaid reimbursement rates, the increasing reliance of private insurance plans on various types of managed care and administrative constraints on physician practice decisions, and new attention to areas such as medical devices and equipment are fundamentally changing the practice of medicine. Physicians are almost uniformly frustrated and angry over the loss of control they once exercised. The nation's 7,000 hospitals are similarly facing painful transitions, both as a result of Medicare rate limits and the explosion of new types of competitive delivery systems, such as ambulatory surgical centers and hospices. The growth in for-profit hospital chains in the 1970s and 1980s has deprived community hospitals of many privately insured, middle-class patients and further concentrated uninsured, multiproblem patients in public or inner-city voluntary hospitals.

The state of the U.S. health care system as it enters the 1990s has been described as a "paradox of excess and deprivation" (Enthoven and Kronick, 1989:29). As is discussed below and in the New York study, the impact of the AIDS epidemic on the confederation of health care providers and insurers has been as varied as the system itself. Major portions of the financing and delivery systems have been largely untouched by the epidemic, others have made marginal changes, and those institutions that serve the populations at highest risk have been profoundly affected.

To simplify its task of describing the impact of the HIV/AIDS epidemic on the nation's health care system and the response of that system to the epidemic, the panel adopted four descriptive categories of the system: a provider of services, an employer of professional and other personnel, a marketplace for goods and services, and a major financial sector of the economy. Clearly, the health care system is far more complex and subtle than these gross categories suggest, but they provide a means of organizing and delimiting our analysis.

In each of its capacities, the health care system has been affected to a large or small extent by the HIV/AIDS epidemic. How lasting the impacts will be is not clear. For the health care system, as for any of the social areas and institutions discussed in this report, it is difficult to sort out the impact of HIV disease from a web of associated concerns. The connections between HIV disease and homosexuality, intravenous drug use, poverty, and racial or ethnic minority status contribute to this difficulty. For example, if physicians are disinclined to care for AIDS patients, is it because they fear AIDS? Or, even in the absence of HIV, would they be uncomfortable with patients who are gay or use intravenous drugs, daunted by the complexity of care or unwilling to render services in a context in which reimbursement may not even cover their costs? This chapter makes no claim to being exhaustive or even comprehensive on these issues; rather, it touches on a wide array of possible impacts on the health care in its functions as service provider, employer, economic market, and financing mechanism and suggests key aspects to be followed as the epidemic unfolds.

THE HEALTH CARE SYSTEM AS A SERVICE PROVIDER

Challenges for Traditional Health Care Delivery

AIDS presents a major challenge to hospitals, nursing homes, physicians, nurses, and other direct providers of health care services. The clinical characteristics of HIV/AIDS account for its difficulty in management. The disease is, first of all, a new one. Most medical knowledge is accumulated over decades, if not generations. Yet with HIV disease, the health care system is faced with the task of caring for approximately 1 million people in the United States who have a disease that has only been recognized for a few years and whose course, treated or untreated, is still only partly understood.

In total numbers, there are probably tens of thousands of persons with clinical manifestations of HIV disease; however, only a fraction of them require intensive medical care at any one time. The impact on the health care system must be measured by the volume of patients in particular locales and in light of the preexisting health care system. That large number of patients (combined with the crack cocaine epidemic, homelesseness, and other problems) has resulted in a serious strain on an already high hospital occupancy rate. In other cities, the capacity of hospitals to absorb AIDS inpatients is not as pressing a concern as are the stigma and inadequate reimbursement associated with AIDS care.

Although more HIV-positive individuals will become ill in the next several years and most of them will require hospitalization, it is difficult to predict the magnitude of hospital-based and other services that will be required,

largely because modes and standards of care change relatively quickly. Prediction of (and therefore planning for) specific quantities and types of clinical services and facilities can be extraordinarily difficult because of the rapidly changing nature of HIV clinical care.

One example of the evolution of HIV care is the changing need for inpatient hospital beds. Consider cryptococcal meningitis, a fungal infection of the central nervous system, which eventually attacks 10 to 15 percent of AIDS patients (non-HIV-infected people also occasionally contract the disease). Until recently, HIV-infected people with cryptococcal meningitis required several weeks of intravenous therapy with a relatively toxic drug, amphotericin B, followed by twice-weekly amphotericin B maintenance therapy for the rest of their lives. They constituted a substantial fraction of AIDS patients requiring hospital or nursing-home beds or intensive at-home therapy. Then, in the winter of 1990, a new oral antifungal drug, fluconazole, was licensed. It is equal to amphotericin B, at least for maintenance therapy; many patients who would formerly have required elaborate intravenous therapy (often in an institution) now take one pill a day at home.

Another challenge for the provision of direct services is the complexity of the disease. HIV disease attacks virtually every organ system of the body. The U.S. health care system has long been criticized for its failure to provide comprehensive, coordinated primary care and for too great a reliance on specialists and subspecialists. It is precisely such comprehensive, primary care that is necessary to cope with a disease that is chronic and disabling and that stubbornly refuses to be limited to any single organ system. In many ways, then, the calls for adequate ongoing medical care for HIV-infected persons reflect and reinforce other current demands for an overall reordering of staffing and reimbursement priorities in American health care.

The transmissibility of HIV poses another challenge to health care providers. Not only does the fear of acquiring HIV infection imperil recruitment and retention of health care professionals to work with HIV-infected patients, it also has the potential to drive a wedge between providers and their patients.

Organization of HIV/AIDS Care

A recurring question in the delivery of health care for people with HIV disease and AIDS involves how care ought to be organized and in what setting it might best be delivered. Various goals—increased survival, patient satisfaction, efficiency, economy, or quality care—may call for differing arrangements for delivering care. Optimal care for HIV disease may be difficult to accommodate within the extant organizational and reimbursement

schemes of the health care delivery system. The newness, complexity, and transmissibility of AIDS, together with other problems associated with it, have tested traditional delivery mechanisms and forced the creation of new ones.

Hospital Care

The hospital is an essential source of care for people with AIDS, most of whom need to be hospitalized for diagnosis or treatment more than once as their disease progresses. The care of AIDS patients has been highly concentrated in inner-city public hospitals, which have also had to cope with inadequate reimbursements, staff shortages, lack of referral facilities, and the use of emergency rooms as sources of primary care (Andrulis, 1989).

Although the characteristics of the patient population with HIV disease and the resources to meet their needs vary from city to city, many health administrators and planners have looked to San Francisco's experience with the epidemic and its delivery of care as an exemplary model. The San Francisco model of care is distinguished by its reliance on extensive outpatient services and volunteer social support provided by a well-established gay community. Nevertheless, as Benjamin (1988:420) notes, "the fact remains that where life-threatening illness is concerned, for surprisingly large numbers of people in times of illness, be it ever so expensive there is no place like the hospital." Hence, even the San Francisco model includes a significant hospital component. San Francisco General Hospital, a municipal facility, created the nation's first dedicated inpatient hospital unit for AIDS care in 1983. Since then, care for patients with AIDS, the overwhelming majority of whom have been gay men, has been provided by multidisciplinary teams of physicians, nurses, psychologists, and social workers, supplemented by volunteers.

In cities in which the patient mix tends to include more intravenous drug users, AIDS-dedicated hospital wards have also been established. These wards have come to be accepted by physicians and patients alike, despite some initial misgivings that such centralization of care could further stigmatize patients, scare away health care workers, reinforce apprehensions about HIV transmission in a health care setting, and isolate the ward from the rest of the hospital. Disease-specific wards are not unprecedented. They are currently common in cancer treatment, and they have been prominent in treating diabetes, tuberculosis, and polio. Clinics dedicated to the care of HIV disease are also now common components of urban hospitals (Makadon, Delbanco, and Delbanco, 1990a; Turner, 1990).

The establishment of AIDS-specific hospitals was once contemplated in several cities, but it now seems unlikely. A New York City task force recommended against the creation of single-disease hospitals, in part because

of the historical lessons provided by tuberculosis sanatariums and state mental hospitals. The task force concluded (Rothman, Tynan, and New York City Task Force on Single-Disease Hospitals, 1990:766) "[that] the creation of HIV-only hospitals would promote negative stereotyping … interfere with [patients'] freedom of choice [and] engender an unacceptably low quality of care." A proposal in San Francisco to create an AIDS-dedicated institution never came to fruition (levine, 1990). The only AIDS-specific hospital actually established was in Houston. A joint venture of the University of Texas and American Medical International (the Institute for Immunological Disorders), the hospital was closed after losing $8 million in a little more than a year. Too few AIDS patients had enough private insurance coverage to support such a venture—two-thirds of the patients were indigent. In addition, some AIDS patients with insurance shunned the hospital, knowing that the name of the hospital merely appearing on their bills would alert their employers and insurers to the nature of their problem. The hospital may have also been a victim of its own success: it managed to provide treatment for many of its patients on a less costly and thus less lucrative outpatient basis.

The degree to which AIDS care should be rendered in centralized or specialized settings continues to be a matter of some debate. Hospitals that are experienced in providing AIDS care may be able to produce better outcomes. A study of 257 AIDS patients at 15 California hospitals, for example, found a significantly lower in-hospital mortality rate for Pneumocystis carinii pneumonia at the hospitals with more experience treating the disease (Bennett et al., 1989). The authors of the California study suggested three possible options: creating regional centers, promoting rapid but carefully monitored increases in the experience of low-volume hospitals, or providing focused educational efforts for facilities with little experience with AIDS. The implications of this study continue to be debated as the number of AIDS cases continues to grow and be geographically dispersed (Cotton, 1989; Greene, Leigh, and Passman, 1989).

Out-of-Hospital Care

AIDS has also had an impact on health care outside of hospitals. For example, AIDS has prompted a reexamination of the philosophy underlying hospice care. Hospice care, in the home and in specialized centers, emerged as an alternative to high-technology hospital care at the end of life. It involves palliative interventions and aggressive pain relief, and patients forgo any intrusive or curative procedures or experimental approaches. Hospice patients would rarely, for example, be readmitted to a hospital. They are typically cancer sufferers, whose disease has fairly well-defined stages and for whom the length of life remaining can be predicted with some certainty.

People with AIDS may not fit easily into the hospice scheme. The course of disease progression for AIDS is much less predictable than for many cancers. In the context of AIDS, hospice organizations have had to redefine palliative care to accommodate more therapeutic interventions for the continued use of zidovudine (AZT), the need for treatment of anemia (a frequent side effect of AZT), and the administration of intravenous therapies, such as gancyclovir, to treat cytomegalovirus retinitis, a sight-threatening condition. In addition, people with AIDS may wish to seek readmission to a hospital or undergo therapies (such as ventilator assistance) that are unavailable in traditional hospice settings.

One hospice administrator (quoted in Wallace, 1990:13) noted: "For the person with AIDS, hospice is less a gift from God and more the grim reaper … persons with AIDS, reacting to the prejudices against them can initially mistrust the motivations and altruism of hospice programs." In some cities, such as Boston, San Francisco, Seattle, and New York, hospices have been established exclusively for people with AIDS, which obviates some of the concerns about how traditional hospice services meet the needs of people with AIDS.

The hospice dilemma illustrates many of the tensions inherent in the shifting conceptualization of HIV disease from a terminal to a chronic illness. Other sources of tension arise in providing a context for decisions about forgoing life-sustaining care. In recent years, advocacy of "death with dignity" has increased with the growth of high-technology care. But advocating decisions about forgoing high-technology care may seem irrelevant to poor people who have tremendous difficulties in gaining access to any care at all.

Other out-of-hospital settings are also important to people with HIV disease, although traditional sources of long-term care have not always served them well. As people with HIV disease live longer, more are developing symptoms of dementia and neurological deficits, as well as the physical deterioration that requires supportive care. Many nursing homes have been reluctant to care for AIDS patients, citing the fears of other clients, inexperience with managing infectious disease, and lack of adequate reimbursement. Administrators of long-term care facilities have been reluctant to admit gay or intravenous-drug-using patients, who are typically younger than the rest of their patients. In skilled nursing facilities, the levels of intensity of services and the care available generally do not address the needs of people with HIV disease because of fluctuations between periods of acute illness and wellness (Benjamin, 1988).

HIV care has helped lead the way in the performance of lumbar punctures, transfusions, chemotherapy, and intravenous hydration in clinics rather than as formerly, during a hospital stay. Diminishing lengths of hospital stays for people with HIV disease are likely to be matched by increases in

the acuity of illness among patients seen in clinics. A survey of 67 members of the National Association of Public Hospital with data on AIDS patients from 1985 to 1988 revealed a significant decrease in average length of stay. The average number of days per patient per year also declined, but that was offset by a slight increase in annual admissions per AIDS patients. In 1988 "the typical AIDS patient spent 29.1 days in the hospital but had 1.6 admissions" (Gage et al., 1991:42).

The advent of HIV disease has coincided with numerous initiatives to control the cost of health care. Because hospital care constitutes such a large percentage of total health care costs, many of the initiatives were designed to reduce inpatient stays: prospective payment, preadmission screening, and same-day surgery are the best-known examples. Thus, the fiscal environment and the desire of AIDS patients to remain outside the hospital have converged to favor greater use of nonhospital facilities.

Another beneficiary of more aggressive nonhospital care has been the growth of high-technology home care. Scores of small companies now provide equipment for intravenous, intramuscular, and aerosolized home therapies. Intravenous pumps, which once were complicated even for a nurse to operate, now work at the flip of a switch, allowing nurses to visit patients once a week at home rather than several times a day in the hospital (Manges, 1989; Podger, 1990). Industry analysts have predicted that home health care, which generates an estimated $15 billion of sales annually, will be the "fastest growing business segment from the mid-1990s until well into the next century" (Feder, 1991:C1). The AIDS market is a significant fraction of a fiercely competitive enterprise.

Many private insurers and government regulators are subjecting home health care bills to careful scrutiny because of the newness of administering complicated regimens in the home and the proliferation of equipment that can be used at home. Many start-up companies are facing difficulties in collecting bills; Selz (1990:B2) notes: "reimbursements [depend] heavily on compliance with numbingly complex and constantly changing government policy and procedure." As these difficulties are resolved, AIDS care may pave the way for the routine reimbursement of complex home-based treatments.

Connections with Community-Based Services

One striking development in the health care system is the close relationship that has evolved between medical providers and institutions, on one hand, and community-based agencies, on the other. Some fields of medicine, such as oncology and diabetology, have long relied heavily on volunteers for services, ranging from hospice care to educational camps for juvenile diabetics. With HIV disease, however, the amount

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