Health Care Delivery and Financing
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 (Chapter 9), 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.
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).
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 (see also Chapter 6). 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
of community involvement in (and substitution for) medical services has been remarkable in both human and economic terms (Arno, 1986; Smith, 1989).
One activity of community-based agencies that has been widely advocated as a measure for containing the costs of HIV medical care and enhancing patient satisfaction and access to services is "case management" (Jellinke, 1988). Case-management programs tend to include at least the following elements: outreach, standardized eligibility screening, comprehensive assessment, initial care planning, service arrangements, ongoing monitoring, and periodic reassessments. To perform these wide-ranging tasks, a case manager may serve simultaneously as gatekeeper, advocate, educator, diagnostician, broker, and caregiver. First instituted in the United States in the 1940s through workmen's compensation and physical disability services, case management has more recently been refined in caring for elderly and mentally ill patients.
Case management has two major forms: a medical and a social service advocacy model. Under the medical model, case management is often hospital based and takes place primarily in the context of planning a patient's discharge. In the social service model, case management is oriented more toward providing social work and coordinating services to patient/clients. Under this model, the case manager may follow clients both in and out of hospitals. Traditionally, all case management programs try to centralize the responsibility for advocacy in one individual.
Although such systems have been widely encouraged because they are believed to improve the quality of care and reduce costs, evidence of their cost-effectiveness is lacking. In addition, experience with the advocacy model of case management among the elderly suggests that it may actually increase costs by increasing utilization of appropriate services by previously underserved clients (Benjamin, 1988).
A number of states now reimburse providers specifically for case-management services. Case management has been financed through enhanced service reimbursement and AIDS-specific waivers of standard rules for public financing (see below) or through special funding under Health Resources and Services Administration (HRSA) or private foundation grants. Most private insurers have some form of case management by which policy holders with high-cost illnesses are assigned to an individual (usually a nurse) who can investigate the patient's needs and authorize services that are cost-effective, even if they are not technically covered in the policy.
In the Ryan White Comprehensive AIDS Resources Emergency Act of 1990, case management was recognized as a primary service under Titles I and II and an optional service for early intervention under Title III. Even with this strong encouragement, the concept of case management remains somewhat unclear, and its benefits remain, in large part, unevaluated. In
1988 the Sierra Health Foundation of Northern California undertook a 3-year program of support for a regional case-management system. As this funding drew to a close, the foundation convened a group of national experts in case management to examine the concept and evaluate the efficacy of this service. While agreeing that case management seems to mean different things to different people, the conference participants reaffirmed the central concept of making available to clients assistance in maneuvering through the complex service system, advocating for patients, and enhancing preventive strategies. They suggested areas of research to clarify methods and outcomes. At the same time, they noted (Sierra Health Foundation, 1992:24): "case management is only as good as the services available for referral and that if services are not available for referral in the community, then case management can simply not access them."
THE HEALTH CARE SYSTEM AS EMPLOYER
Health care is the third largest industry in the United States. It employs 8 million people in a wide range of capacities. In many communities, the local hospital or medical school is one of the area's largest employers, particularly for highly paid professional staff and entry-level workers in clerical and janitorial positions.
Recruiting and Training Providers
The term "AIDS physicians" refers to doctors who engage in a wide range of activities. In university facilities they are involved in basic, epidemiologic, and clinical research on the disease. In local communities they are the physicians who have seen a few patients with HIV disease and are willing to see more of them. Any physician identified as an AIDS care provider is likely to be involved not only in providing demanding patient care, but also in developing institutional policies, planning for care needs, and responding to media inquiries.
Among the challenges confronted in planning for the care of people with HIV disease is deciding what training is necessary to provide such care. There is no single subspeciality (with attendant prerequisites, board examinations, and certification) for AIDS care: no single medical discipline encompasses all the skills and training necessary to treat the wide spectrum of clinical manifestations of HIV disease (Bartlett, 1988; Cotton, 1988). The American Board of Internal Medicine entertained—and rejected—the notion of creating a new specialty for HIV care.
AIDS was originally thought to be a disease largely within the province
of infectious disease experts. Indeed, a major impact of AIDS has been on the practice of infectious disease medicine. Infections disease is a relatively new medical subspeciality and was for many years mainly hospital based; its practitioners provided consultation to other physicians and rendered relatively little ongoing primary care. The chronic nature of HIV disease has meant a radical change in the practice of many infectious disease specialists, who now often serve as primary care physicians for patients with HIV disease.
In the years just prior to the HIV epidemic, there were concerns about a projected oversupply of physicians in most medical specialties, including infectious disease.1 In the late 1970s the president of the Infectious Disease Society of America said (Petersdorf, quoted in Bartlett, 1988:10): ''Even with my great loyalty to infectious diseases, I cannot conceive of the need for 309 more infectious disease experts [the number taking the boards that year] unless they spend time culturing each other." By the end of the 1980s and after almost a decade of experience with AIDS, however, the situation had changed. In fact, according to a 1990 report in the Annals of Internal Medicine , infectious disease was the only medical specialty that needed more physicians.
General internists, family medicine specialists, and pediatricians are also potentially well suited to deliver primary care to people with HIV disease. They are dispersed geographically and experienced in primary care. A number of commentators (e.g., Northfelt, Hayward, and Shapiro, 1988; Smith, 1991) have proposed a range of AIDS-related services that primary caregivers might be expected to provide, including counseling about HIV transmission and prevention strategies, administering and integrating diagnostic tests, monitoring patient care during early HIV disease, and recognizing complications that require consultation or referral to a specialist.
AIDS arrived on the American health care scene when the preference of newly graduated physicians was shifting away from primary care specialties and toward such specialties as radiology, orthopedics, and otolaryngology. In particular, internal medicine, the specialty most likely to feel the impact of providing ongoing care for HIV-infected patients, had been undergoing a decline in interest for several years (McCarty, 1987). Some of the reasons for this trend include the technological focus of medical school training and the higher compensation in specialty fields. Specialties in which talking to and examining patients constitute the bulk of physicians' activities are not as highly remunerated as those involving diagnostic, therapeutic, and surgical procedures (although efforts are under way to redress these imbalances through changes in Medicare and other reimbursement schemes). Many physicians also begin medical practice encumbered by large educational debts, a further reason to avoid lower paying specialties.
Concern is growing that the burden of the epidemic may further dissuade
young physicians from entering specialties such as internal medicine or from practicing in geographic locations where the burden or risk of caring for patients with HIV disease is perceived to be high (Ness et al., 1989). In some areas, AIDS remains an uncommon phenomenon; in others, it is promient: "Today, a third-year medical student in New York City has more direct experience with [HIV] disease than a practicing internist in virtually any small town in the nation" (Cotton, 1988:520).
Surveys of physicians in training reflect concerns that AIDS will adversely affect training programs by skewing the mix of patients (Imperato et al., 1988). Such concerns tend to overlook the wide spectrum of diseases represented by AIDS and the historical fact that physicians have always been trained by studying the most prevalent disease at the time, such as tuberculosis or syphilis.2 Moreover, physicians in training at sites where AIDS is prevalent tend to overestimate significantly the proportion of patients with AIDS under their care, perhaps because of anxiety or stress associated with HIV disease or the exigencies of caring for patients with such great needs (Cooke and Sande, 1989; Hayward and Shapiro, 1991).
No firm evidence is yet available to determine whether HIV disease is contributing to the continuing decline in popularity of primary care specialties and causing young physicians to shun areas with a high prevalence of AIDS when making career choices. As with topics treated in other chapters of this report, confounding factors make it difficult to sort out the particular impact of HIV disease. Some cities where AIDS is prevalent have also suffered declines in the quality of life that make them less attractive to young professionals. But many urban hospitals with high proportions of AIDS patients are also prestigious teaching centers, and a few of the specialties in which occupational risk has been particularly feared, such as orthopedic surgery, are particularly well paid. Thus, there are incentives that might draw graduate physicians toward AIDS care.
A recent survey of internal medicine and family practice residents in ten geographically representative states showed that 77 percent rated their ambulatory care of AIDS patients an excellent educational experience. Yet 23 percent of the residents stated that, given the choice, they would not take care of any patients with AIDS (Hayward and Shapiro, 1991).
Assessing the impact of AIDS on the supply of nurses is somewhat more problematic, although hospitals, nursing homes, and other institutional health care providers are currently experiencing staffing problems, and the National Commission on AIDS (1990) identified a shortage of nurses as an obstacle to improved care of AIDS patients.
Nurses and their professional associations have not figured prominently
in debates about AIDS care. Nurses have a different perspective on the debate about professional obligations toward HIV-infected individuals than physicians. The decision about whether to treat a particular patient is seldom within a nurse's purview. As hospital employees, nurses have little, if any, freedom in choosing which patients to serve (nor do patients have much say in choosing their nurses). But nurses are the most constant providers of round-the-clock care for persons with AIDS, whose physical and emotional needs are great.
Fox, Aiken, and Messikomer (1991:249) have speculated about the impact of AIDS on the nursing profession:
[Because of the lack of a cure for AIDS, it is] the caring of precisely the sort that nurses are uniquely trained to perform, that makes a difference. [As a result of AIDS] nurses are gaining recognition from physicians, as well as from patients and their families, for their caring attitudes and competence. … [One specific impact of AIDS has been to help] loosen the tight association of nursing care with 'women's work' through the conspicuous number of male nurses who are engaged in the clinical care of AIDS patients.
At San Francisco General Hospital and in other AIDS-dedicated units where multidisciplinary models of care have been developed to integrate physical and psychosocial care both in and out of the hospital, nurses have played a key role. In fact, AIDS service programs have been a vehicle for introducing organizational reforms that have long been sought by the nursing community and urged by expert advisory panels. It remains to be seen whether organizational changes made in response to AIDS will affect hospitals more broadly.
Confronting Occupational Risks
A singular and profound impact of AIDS has been a renewed appreciation for the risk of disease transmission in providing health care. Despite the well-known presence of many occupational risks (including infectious hazards, such as hepatitis B3), infection control in hospitals received very little attention until the dramatic increase in public and professional concern stimulated by the potential risk of HIV transmission. AIDS has prompted not only extensive assessments of risk in health care settings, but also searching examinations of how conscience, codes of ethics, moral obligations, and legal duties define the extent of the duty to treat (see "Defining the Scope of Professional Obligations," below).
Taking care of patients has always been a risky enterprise. In the 1800s and much of the 1900s, physicians and other health care workers faced fearsome epidemics of cholera, yellow fever, and influenza (Fox, 1988). The polio epidemic of the 1950s is within the memory of some who practice
medicine today. Physicians' historical willingness to risk personal danger to care for their patients during epidemics has been important in forging a positive public attitude toward medicine and its practitioners (Kim and Perfect, 1988).
Many current practitioners, however, entered medicine at a time when risks of personal danger were not a major concern. Risks previously thought acceptable or commonplace may be viewed differently, however, in an era of high-tech medicine characterized by rapid advances in virology, immunology, and epidemiology. As Arras (1988:17) comments:
Prior to the development of antibiotics, antisepsis, and vaccines, the entire world might be said to have constituted a 'high risk group' for early death from pestilence and other killer disease. … Present day physicians … no longer believe that anyone, especially themselves, should die from infectious disease.
Health professionals are at risk of occupational HIV infection largely through exposure by accidental cuts or punctures incurred while caring for HIV-infected patients.4 Once HIV was identified as the cause of AIDS and serologic tests for determining HIV antibody status were made available in 1985, prospective studies were undertaken to identify the extent of HIV infection acquired in hospital and clinic settings. A growing body of literature has emerged to quantify the frequency of needlestick injuries, the risk of seroconversion following a single needlestick from an infected patient, and the cumulative risks of practice over the course of a career in particular subspecialities or geographic locations (see Gerberding et al., 1990; Henderson et al., 1990).5
In May 1987 a report by the Centers for Disease Control (1987b) documented HIV infection in three health care workers who were exposed to HIV-infected blood through abrasions in the skin or splashes to mucous membranes. The anxiety prompted among health care workers by this report of seroconversions without needlestick exposures was quickly evident. It gave rise to a series of recommendations from the CDC and to a new regulation from the Occupational Safety and Health Administration (OSHA) for infection control measures ("Bloodborne Pathogens Standard," 29 CFR 1910. 1030, 1991). Generally known as "universal precautions," the measures are designed to avoid exposure to blood and body fluids regardless of whether patients or health care workers are believed to be infected (Centers for Disease Control 1987a, 1988; U.S. Department of Labor, 1987). More recent recommendations have suggested a protocol for prophylaxis with AZT following needlestick exposure from infected patients (Centers for Disease Control, 1990), although there is doubt as to the efficacy of even immediate treatment (Lange et al., 1990).
The risks are not the same in all settings or in all health care specialties. A survey of 26 sentinel hospitals by the CDC revealed that an average of
1.3 percent of patients tested in these hospitals were HIV positive. The highest rate was at the University of Medicine and Dentistry in Newark, New Jersey, where 7.8 percent of patients tested HIV positive (St. Louis et al., 1990). Other studies of urban hospital emergency rooms have revealed disturbing rates of HIV infection (e.g., Kelen et al., 1989).
Attempts are being made to monitor health care workers' attitudes toward infection control and to define sources of risk (Gerberding and Schecter, 1991). The techniques and behaviors in health care settings that must be modified to reduce HIV transmission risks, however, may be as difficult to change as risky sexual behavior and drug-use habits. Health care procedures are learned behaviors and habits of many years' duration. More needs to be known about how to change infection-control practices and how psychological factors contribute to assessing and reducing risks. The spectrum of possible responses is wide: some health care workers may deny their risks and take few or no precautions; others may exaggerate risks and refuse to care for patients they believe to be HIV positive (Cotton, 1988; Rosenthal, 1990).
Concerns about HIV infection risks have two sound bases: even remote risks are real, and with HIV the risk is of a lethal disease. The health care workers at greatest risk, such as surgeons, often voice skepticism about the scientific advice on risk reduction. Scientific information by itself about the nature of risk can only partly mitigate the fear of contracting a potentially fatal disease. Health care professionals who come in frequent contact with the blood and body fluids of patients who are likely to be HIV-infected remain deeply concerned, even while appreciating the statistical information about the remoteness of risks.
Health care workers' concerns about becoming sick and dying following occupational exposure to HIV may be exacerbated by worries about breach of confidentiality, loss of employment and employee benefits, and possible economic ruin (Aoun, 1989; Cadman, 1990). Proof-and-causation problems may make it difficult to recover damages for workplace injuries in tort suits against hospitals or manufacturers. A health care worker who contracted HIV would have to prove that the HIV transmission occurred in the hospital and that the hospital was negligent—events that, because of the lengthy incubation period of the virus, may have occurred years previously. Meanwhile, the insurer and hospital might try to uncover the worker's sexual and drug-use history to ensure that other risk factors are not present.
Workers' compensation is a way to compensate for workplace injuries without a showing of fault. Although it is available to health care workers who are hospital employees, workers' compensation is better suited to dealing with traumatic injury than long-term disability. Workers' compensation has serious limitations in the context of HIV injury. For example, benefit levels are tied to the salary at the time of injury or death, which may be
unfair for interns and residents or student nurses, all of whom could anticipate greater salaries later in their careers (Brennan, 1987; Cooke and Sande, 1989; Hauptman and Feinberg, 1990).
HIV-Infected Practitioners and Risks to Patients
It is not just caregivers who are worried about HIV transmission in health care settings. HIV-positive health care workers can transmit the virus to patients in the course of rendering care. Even remote or theoretical possibilities of caregiver-to-patient transmission can spark a great deal of concern. A Texas pediatrician was forced to close his practice within days after it became known through local news stories that he was HIV positive (Applebome, 1987).
The death of Dr. Rudolph Almarez, a breast cancer surgeon who had operated on as many as 2,000 patients before he died from AIDS, generated considerable concern in Baltimore. Soon after his case was made public in 1990, a Baltimore law firm began to solicit clients to seek legal advice whether they were infected or even knew their serostatus. Clients were advised that emotional distress might be grounds for recovery against the hospital where Dr. Almarez practiced, and lawsuits were filed. In two separate cases, however, a Baltimore judge dismissed complaints based on fear of exposure to AIDS. The judge noted that there were no allegations that Dr. Almarez had not followed recommended infection control procedures or that any accident had occurred during surgery. The plaintiffs did not allege Dr. Almarez had infected them. A "look-back" study failed to uncover any HIV-positive patients (Rossi v. Almarez, Faya v. Almarez, Baltimore City Cir. Ct. Nos. 90344028 CL 123396; 90345011 CL 12345g, May 23, 1991).
Of the 202,843 cases of AIDS reported as of 1990, less than 5 percent are known to have been among health care workers. This is a slightly smaller fraction than is proportional to their number in the population at large. The attention to occupational risk for health care providers has overshadowed the fact that many more health care workers have become infected off the job, through unprotected sex or intravenous drug use. Health care workers with AIDS have included 679 physicians, 42 surgeons, 156 dentists and dental hygienists, and 1,199 nurses (Barnes et al., 1990). Many of the infected workers are HIV positive but have yet to develop AIDS. A number of look-back studies have been conducted of patients of infected health care workers to develop approximations of patient risk, but they are expensive to conduct and fraught with methodologic difficulties (Danila et al., 1991). The only alternative to developing estimates of risk of transmission is the development of theoretical models (Office of Technology Assessment, 1991).
Despite the theoretical risk to patients of HIV transmission in health care settings, there was little discussion in the late 1980s among professional associations and government officials about actions to be taken should a case of practitioner-to-patient transmission occur.6 Nor were there guidelines as to what kind of procedures HIV-infected health care workers should be permitted to perform or who among colleagues, employers, or patients should be apprised of their HIV status. In the absence of clear policy guidelines, cases were handled on an ad hoc basis. An HIV-positive dental student from Washington University St. Louis was dismissed; a Chicago neurologist obtained a consent decree from a federal court that allowed him to practice but limited his involvement in certain invasive procedures; a director of anesthesiology was denied contact with patients and then disciplined when he personally assisted a patient who had vomited and was in immediate danger of aspirating; a gynecologist was forced to abandon a lucrative medical partnership despite his offer to do no work requiring physical contact with patients (Gostin, 1990:2091).
It became apparent that risks to patients in health care settings, if exceedingly remote, was more than theoretical when the CDC reported the possible transmission of HIV to Kimberly Bergalis, a patient in the Florida dental practice of David J. Acer, who died of AIDS. In 1991 the CDC announced that five patients had likely become infected in the course of treatment by Dr. Acer.7 Ms. Bergalis's case sparked a firestorm of controversy and intense public policy debate concerning HIV testing in health care settings and possible strictures on practicing by HIV-positive health care workers. Ms. Bergalis, who died from AIDS in December 1991, blamed her illness on public health officials in a highly publicized letter published in Newsweek (Kantrowitz, 1991). In media appearances and in congressional testimony, the Bergalis family launched a campaign calling for mandatory testing of health care workers and disclosure of test results.
The issue of disclosure of caregivers' HIV status to patients is a critical policy concern. In a Gallup poll conducted among 1,014 adults in May 1991, 87 percent of the general public believed that doctors and dentists should be tested for AIDS, and 84 percent believed that nurses should be tested. In another study, more than one-half of patients surveyed said they would seek care elsewhere if they found out their physicians were caring for people with HIV disease (Gerbert et al., 1989).
In July 1991, largely as a result of the Bergalis case, the CDC published new guidelines reiterating the need for strict adherence to universal precautions and infection control procedures (Centers for Disease Control, 1991). The guidelines also stated that health care workers who perform "exposure-prone invasive procedures" should know their HIV status. Infected health care workers were directed not to perform such procedures unless they sought counsel from an expert panel as to the circumstances, "if any," under
which it would be appropriate to do so. A few days before the guidelines were issued, an additional clause was added at the behest of Senator Orrin Hatch (R-Utah) and Health and Human Services Secretary Louis Sullivan (Gautier, 1991): the "informed consent" provision in the CDC guidelines requires that HIV-infected health care workers disclose their seropositivity to prospective patients undergoing exposure-prone, invasive procedures.8
On August 16, 1991, the CDC had announced the initiation of a process to develop a list of exposure-prone, invasive procedures to serve as a guide for local review bodies. Although the CDC anticipated completing the development of such a list by November 15, 1991, in order to clarify what it wanted states to do, a November 4 meeting revealed widespread discontent among the medical and public health community with CDC's approach (Altman, 1991). Virtually all medical and professional associations except the American Medical Association refused to cooperate in the list-making endeavor because they were not convinced that there existed sufficient scientific evidence on which to base such a list. In October 1991 Congress passed an appropriations bill that included an amendment requiring states to institute the CDC guidelines or their "equivalent" or risk the loss of Public Health Service funds (Treasury, Postal Service, and General Government Appropriations Act, 1992, P.L. 102-141 Sec. 633 (1991)). However, on July 30, 1992, the National Commission on AIDS recommended against both mandatory testing for doctors and mandatory notification of patients because the risks of infection are so remote and disclosure so detrimental to a provider's career (National Commission on AIDS, 1992; Leary, 1992).
Many questions remain to be answered as professional associations, state and local policy makers, and hospital administrators and risk managers sort out federal directives and make policy. The ethical arguments on both sides of the issue are complex (Gostin, 1989; Daniels, 1992). Perhaps the overarching question, in the words of former New York State Health Commissioner David Axelrod, is the extent to which "highly unusual circumstances" should "dictate broad policy questions" (Altman, 1990). As has been apparent in other settings, such as schools, workplaces, and prisons, sober appraisals of risk can easily be overwhelmed by fear, prejudice, misunderstandings, and the impact of highly publicized individual cases.
The Burden of Caring for AIDS Patients
Because of its clinical complexities, its dire nature, and the stigma that surrounds it, AIDS poses considerable challenges for caregivers. The range of opportunistic infections involved means that virtually any organ system, and often many at the same time, can be subject to rare and potentially life-threatening infections or malignancies. In addition to complex medical needs, complex psychosocial needs that are evident in other chronic and
terminal illnesses may have special urgency in AIDS patients. Whether because of medical problems, discrimination, or both, people with HIV disease may lose jobs, housing, and the support of families and friends.
The reasons that physicians might choose to limit their involvement with HIV disease are varied (Volberding, 1989:748):
Many may feel intimidated by the rapidly growing medical complexity of AIDS-associated illnesses and by the numerous diagnostic and therapeutic approaches available. Some may be afraid of becoming infected with HIV in the course of treating patients. Others, like so many in our society, may fear the sex-and drug-related behavior that accounts for much of HIV transmission (a fear that contributes to discrimination against patients with AIDS). Finally, physicians may feel unable to cope with the severe psychological stress of caring for the young, dying, disfigured, and isolated patient—the patient that is so typical in this epidemic.
Patients with AIDS are younger, on average, than others with life-threatening or chronic illnesses. They often are contemporaries of their physicians in age, social class, and education. Many health care providers who have taken on large numbers of patients with HIV disease are themselves gay and may share a special fear of the virus with their patients. The psychological toll of losing tens or hundreds of previously healthy patients can be enormous. Grief, hopelessness, and frustration about the limitations in treatment for HIV make caring for persons with AIDS a challenge.
The Influence of Prejudice
A cornerstone of a physician's ethic has been objectivity in the care of patients. Physicians try to put aside personal feelings about the life-styles, values, and morals of their patients (Groves, 1978). Yet such objectivity may be difficult to maintain. Physicians may occasionally express overt dislike and frank prejudice for patients whose life-styles they find disagreeable. Physicians may be uncomfortable in treating gay patients or discussing sexuality (Kelly et al., 1987a,b; Lewis, Freeman, and Corey, 1987). Conversely, patients may be unwilling to share information about their life-styles that may be relevant to their health care (Dardick and Grady, 1980). Prejudice may be expressed in subtle devaluations of stigmatized patients in ways that providers may not even realize.
Some observers have wondered whether "submerged prejudices enhance the apprehension of danger" of HIV transmission (Jonsen, 1990:158) and find some evidence for this in the contrasting attitudes about HIV and hepatitis B. Many health care workers have seemed to overlook the danger of hepatitis, while expressing serious concerns about HIV.
Reluctance to treat patients with HIV disease has been documented, at least to a certain extent, in a number of surveys:
A survey of 258 New York City interns and residents in hospitals with a large AIDS patient census revealed that roughly 50% were "mildly, moderately, or extremely" resentful of having to take care of AIDS patients. If given a choice, 25% said they would stop taking care of AIDS patients; 24% believed that refusing to care for AIDS patients would not be unethical (Link et al., 1988).
A 1987 survey of second-year medical students revealed that 7% thought they should be allowed to decline taking a history from a patient with AIDS; 14% thought they should be allowed to refuse to examine such a patient; and 32% felt they should be able to decline to draw blood (Imperato et al., 1988).
Answers to hypothetical questions on surveys do not necessarily reflect what health care workers actually do when put to the test. As an example, a 1986 survey of 325 orthopedic surgeons in the United States revealed that nearly 50 percent agreed that a surgeon was ethically obligated to operate on HIV-positive patients whenever surgery was medically indicated; yet only 4 percent of the respondents had themselves declined to operate on HIV-positive patients (Arnow et al., 1989).
Refusal to care for people with AIDS or HIV disease, or those at risk, may result in a broad range of harm. Refusal to treat can lead to systematic denial of access and substandard care. People who are refused care may ultimately never find it, or they may be harmed by delays if their condition worsens as a result of a refusal. Being refused care stigmatizes patients and adds to the considerable psychological burdens of living with HIV disease. Such refusals can also exacerbate the risk for health care professionals who remain steadfast in their willingness to treat and, hence, assume a disproportionate burden of caring for HIV disease. In addition, providers who care for people with AIDS have themselves experienced stigma and discrimination.
Defining the Scope of Professional Obligation
One impact of AIDS has been the revival of interest in the history of physicians' response to occupational risk (Friedlander, 1990; Kim and Perfect, 1988). Bosk and Frader (1991:268) note: "AIDS as a total social phenomenon has become the lens for focusing on the obligations of the members of the medical profession." However, history provides an imprecise guide to physicians' individual or collective duties to care for patients with contagious diseases. As revealed in the recent spate of histories occasioned by the HIV epidemic, physicians as esteemed as Galen and Sydenham fled from patients with contagious diseases. Others stayed behind, caring for patients at considerable personal risk (Zuger and Miles, 1987). In European cities during the intermittent plagues that persisted from the fourteenth
to eighteenth centuries, some localities passed laws forbidding physicians to leave during times of plague. More commonly, however, local governments contracted with ''plague doctors"—younger, relatively inexperienced physicians, often from the countryside, who were willing to risk the dangers in exchange for salaries, citizenship, and entry into restrictive physicians' guilds (Fox, 1988).
In the United States, the duty to assume risks in caring for contagious patients, first articulated as a personal religious obligation by colonial physician Benjamin Rush, was codified as a professional duty by the American Medical Association (AMA) in 1847: "And when pestilence prevails, it is their [physicians'] duty to face the danger and to continue their labors for the alleviation of suffering, even at the jeopardy of their own lives." The duty remained part of the AMA's code of ethics until 1957, when it was jettisoned during the exuberance of the first years of the antibiotic era.9
The obligation to care for patients with contagious diseases stands alongside a tradition of freedom of choice in American medicine. "The right to refuse to care for a particular patient, either by not accepting that person as a patient or by discharging oneself from responsibility in a recognized way, is deeply embedded in the ethos of American medicine" (Jonsen, 1990:159). Self-employed physicians have no legal obligations to provide particular services to individual patients, unless some relationship already exists. Medical ethicists have sought to establish the source of collective and individual professional obligations to treat people with HIV disease (Pellegrino, 1987; Daniels, 1991). Some have argued that an obligation derives from distinctive characteristics of medicine as a learned profession or a vocation to which one is called (Emanuel, 1988). Others have argued for a "virtuebased ethic" that mandates physicians to commit themselves to obligations beyond what is narrowly required by law or by contract, recognizing the moral nature of medical practice (Zuger and Miles, 1987).
The situation is different for institutions and their employees. Nurses, for example, as hospital employees, seldom have any freedom in choosing which patients to serve (nor do patients have much to say in choosing their nurses). Hospitals with emergency rooms must offer services to all patients with emergencies. Federal laws provide stiff fines for "dumping" unstable patients on other facilities. Although anti-dumping laws may help ensure safe patient transfer, they do not guarantee that patients with HIV disease will receive the services of any particular institution. Private hospitals are likely to continue to refer patients with HIV disease to public or charity hospitals, along with other patients whose care is complex and for whom there are inadequate reimbursements (Andrulis, 1989; Gage et al., 1991).
THE HEALTH CARE SYSTEM AS A MARKET
Another social impact of AIDS on the health care system is economic. Any epidemic as extensive as that of HIV/AIDS is bound to create markets for new products and services. Although the size and permanence of these markets are difficult to estimate, the following are likely to be the major ones:
health care services (other than those of physicians)
institutional care (e.g., nursing homes)
management and other consultative services
The World Health Organization (1992) estimates the number of HIV-infected people worldwide at 8 to 10 million. Nevertheless, the main marketing focus for therapeutic products of pharmaceutical companies has been the United States and other developed countries because of the expense of the newly developed drugs. AZT, for example, costs patients in the United States $2,000-$3,000 per year, and the potential market for AZT in North America, Europe, and Japan is quite large. The Pharmaceutical Manufacturers Association estimated that some 90 compounds were in some phase of clinical testing as of early 1990. In what is perhaps a first, pharmaceutical companies have been under attack from AIDS activists for the prices charged for drugs. Such attacks have led to challenges to the patent rights of Burroughs-Wellcome to AZT and attempts to revise the federal Orphan Drug Act (National Commission on AIDS, 1991).
Vaccine production is another potentially profitable area for pharmaceutical companies—virtually everyone in the world is a candidate for an effective HIV vaccine, if one can be developed and distributed at a reasonable cost. Aside from the formidable technical challenges in creating an HIV vaccine, there are substantial financial and social barriers. Many of the difficulties revolve around the issue of liability for damages arising from injuries, which are almost inevitable in any vaccination program as broad as that contemplated for HIV (Keystone Center, 1990).
Another market exists for medical devices. Increased costs are associated with the barrier protections adopted by hospitals as a means of minimizing health care workers' contact with blood and body fluids. The items involved include latex and vinyl gloves, protective gowns, face masks, protective eye wear, and containers for disposing of needles and other sharp instruments. The HIV epidemic has spurred the development of needles and syringes that can be disposed of with minimal risk of needlesticks.
Attention in this area has been given to technique (e.g., avoiding "recapping" needles) and technologies (redesigning syringes, needles, and other sharp instruments) (Gerberding and Schecter, 1991).
Few studies have been made of the actual costs of implementing universal precautions. In their study of a 900-bed teaching hospital, Doebbeling and Wenzel (1990) estimated an increase of $350,900 annually for barrier protections against HIV infection. They extrapolated from their data to arrive at an estimated cost nationwide of $336 million for universal precautions in 1989.
Home health care is now a $15 billion a year business (Feder, 1991). The technical capacity of the industry and its acceptance by medical providers have been spurred by the HIV epidemic. This development is the result of a "push"—the desire of payers and hospitals to find lower cost ways of administering intravenous therapy—and a "pull"—the preference of many AIDS patients to be at home rather than in a hospital. Some companies, however, have come under criticism for their high prices, a reflection of the consumer activism that exists in other areas of the system (Green and DeStefano, 1991).
The need for institutions, professionals, and managers to deal with the epidemic has also led to the creation of an AIDS consulting and educational "industry." Pamphlets, audio-and videotapes, lectures, presentations, seminars, and conferences abound on topics ranging from HIV prevention among minority adolescents to surrogate screening techniques that help to identify and avoid underwriting insurance for HIV-infected individuals.
Two states (Washington and Kentucky) have passed laws requiring documentation of HIV education as a condition of licensure of certain health professionals. The effectiveness of such provisions is unclear, as is the potential precedent for the requirement of other disease-specific knowledge.
HEALTH CARE FINANCING
A study of the first 10,000 patients with AIDS showed the average direct medical costs from diagnosis to death to be approximately $147,000 (Hardy et al., 1986). This figure, announced at a press conference in 1985, took on a life of its own in the early years of the epidemic (Oppenheimer and Padgug, 1991). Combined with widespread uncertainty about the extent of HIV infection in the population and its clinical course, the estimate prompted serious concerns about the ability of the health care system to meet the challenge of paying for the necessary care. The $147,000 figure was based on data from hospital charges that were skewed in favor of New York City municipal hospitals, but the AIDS caseloads of those hospitals comprised primarily intravenous drug users, who often suffered from a number of concomitant illnesses and required more hospitalization than gay men
with AIDS. Since 1985, data from other studies have yielded a more complete picture of the direct and indirect costs of AIDS and have shifted the focus of concern.
First, the per-patient costs for AIDS-related medical care have been dropping. Most estimates now place direct lifetime medical costs between $40,000 and $50,000.10 The reduction is attributable to several developments: greater medical familiarity with the disease; more aggressive outpatient management of traditionally inpatient procedures, such as transfusions and lumbar punctures; effective outpatient regimens for such diseases as Pneumocystis carinii pneumonia and cryptococcal meningitis; and the availability of largely volunteer-based social service supports that allow management of sick patients at home and in less costly institutions than hospitals (Arno, 1986; see also Chapter 6).
The direct medical cost of caring for persons with AIDS consumes only a small fraction of national health expenditures—less than 2 percent. For this reason, AIDS has been described as a financing rather than a cost problem. It is rapidly becoming a burden for local governments in cities with a high prevalence of HIV disease (National Commission on AIDS, 1991).
AIDS care is also increasingly the province of public health care financing mechanisms; the burden is shifting more to Medicaid (Green and Arno, 1990). This is true in large part because the epidemic is increasingly manifested among intravenous drug users and poor people, who are unlikely to have private insurance. In addition, patients who may initially have had private insurance through the workplace lose their coverage after they become unable to work (Yelin et al., 1991) and turn to Medicaid and other public programs for indigent care. Furthermore, since a record of a positive HIV test renders someone virtually ineligible for individually underwritten private insurance—or may be considered a "preexisting condition," precluding claims for non-HIV illnesses—there are an unknown number of people whose employment or economic situation would ordinarily be sufficient to obtain insurance, but who now cannot do so.
Although the overall effect of AIDS on Medicaid expenditures is not overwhelming, its impact is considerable in those states with large numbers of cases. The AIDS epidemic also arose when Medicaid was becoming the fastest-growing segment of many state budgets—roughly 15 percent of expenditures in 1992, compared with 7 percent 10 years ago. Medicaid is thus facing cutbacks in many states, and the increasing demand for AIDS care competes with the need to provide other health services.
In the world of private insurance, AIDS has mainly had the effect of adding another screening test to the 15 percent of the insurance market that is medically underwritten: that is, individual medical exams are required as proof of "insurability." (Most insurance is provided though the workplace
and does not require individual health assessments.) Several states, including California and Massachusetts and the District of Columbia, initially banned the use of HIV antibody testing for private insurance purposes. All have now, amidst considerable controversy, reversed that stand (Intergovernmental Health Policy Project, 1990).
Despite the considerable per-patient cost of direct medical care of HIV disease, especially to the public sector, there have been few major structural changes in the health care financing system in response. Indeed, the response to AIDS has been described as "incrementalist." Adjustments have been made here and there in existing financing mechanisms, but no largescale changes have been made. Providers, including hospitals, nursing homes, and physicians, have claimed that AIDS patients are more costly than others. Regulators and rate setters have thus been forced to examine the structure of their reimbursement systems to incorporate this "exception." In New Jersey, for example, this examination has contributed to a major effort to provide more flexibility in determining rates for all diseases.
Various proposals have been put forward for HIV-specific funding of care. Among them are the inclusion of HIV as a categorical disease covered by Medicare, similar to end-stage renal disease (ESRD) (Makadon et al., 1990b) and designation of HIV disease as a Medicaid-eligible condition, at least for outpatient care and prescription drugs. Such structural reforms have generally been rejected by the executive and legislative branches of state governments on two major grounds: concerns over the equity of HIV-specific funding streams (Roper and Winkenwerder, 1988) and the potentially large impact on already strained entitlement programs, much as the Medicare ESRD program has grown far larger than was expected at its inception.
One federal development has been the creation of the Public Health Service's AIDS Drug Reimbursement Program, a pool of money earmarked for assisting patients who are neither insured nor affluent enough to pay for expensive HIV-related drugs, now including AZT, pentamidine, and gancyclovir. This fund, initiated soon after the licensing of AZT, was created from funds already earmarked for AIDS research and care in agencies of the Public Health Service (P.L. 100-71; P.L. 100-471; P.L. 100-116; S. 2240; Merlis, 1990).
What structural financing innovations have been initiated have largely been at the state level. They have included enhanced Medicaid reimbursement for AIDS care, in New Jersey and New York (Rango et al., 1990); creation of AIDS centers with core funding in New Jersey, New York, and California (Williams et al., 1990); and regional centers for people with HIV disease in Maryland and Massachusetts (Smith et al., 1990); and, a number of states have obtained waivers of Medicaid regulations from the Health Care Financing Administration, allowing them to provide medical and other services not usually covered by Medicaid.
The current costs for care of AIDS patients has thus a noticeable, but not overwhelming impact on health care financing, except in those places where a heavy caseload must be supported by an already stressed system. However, it might be asked what the impact will be over the next decade, as those who are infected but not yet symptomatic begin to require more extensive health care. This question cannot be readily answered. It is extraordinarily difficult to project beyond a year or two the costs of AIDS care or the needs for health personnel, because of rapidly changing standards of care. The past few years have seen some developments that have lowered costs and others that have increased them. In the diagnosis of Pneumocystis carinii pneumonia, for instance, a new technique to induce sputum for laboratory analysis has lowered the number of costly bronchoscopies. Introduction of that technique has also required readjustments of the projections of pulmonary specialists needed to perform those bronchoscopies. Similarly, future development in drug therapy, success in orally administered outpatient treatment for conditions that currently require hospitalization, and therapeutic and preventative advances make accurate predictions of future costs and personnel virtually impossible.
The impact of AIDS on the health care system, with all its complexities, is not easily summarized. In part this is because of the greatly disparate geographic impact of the epidemic and differences in preexisting local configurations of health care. In some areas, such as New York City, growing numbers of HIV and AIDS patients have put severe strains on already beleaguered public and university teaching hospitals. Other local health care systems, with fewer cases and smaller inpatient hospital censuses, have been better able to absorb the influx of people with HIV disease or AIDS. Although many more people will be diagnosed with AIDS in coming years, prediction and planning for specific quantities and types of health care services are made difficult by the rapidly changing nature of HIV-related clinical care.
AIDS does seem to be having an impact on certain ways in which health care is delivered. The HIV epidemic may have increased the trend to deliver care beyond the inpatient hospital setting, either in clinics or in patients' homes. Many procedures for people with AIDS that formerly required hospitalization (e.g., transfusions, chemotherapy, and intravenous hydration) are now being done in clinics, and intravenous, intramuscular, and aerosolized therapies are increasingly being delivered at home. And AIDS is helping pave the way for the routine reimbursement of quite complex treatments that are critical not only for HIV-related care, but also for other chronic and terminal illnesses.
The trend toward out-of-hospital care, whether in clinics, hospices, or patients' homes, is being driven by cost concerns and the desire of many ill people to remain in comfortable and familiar surroundings with loved ones. With the AIDS epidemic, these trends are also accompanied by concerns about how to ensure continuity of care and bring rationality to a fragmented health care system.
Although many people with HIV disease face daunting problems in gaining access to and being able to pay for needed care—problems that are only likely to increase as the epidemic becomes more widespread among intravenous drug users and their sexual partners and poor residents of inner cities—AIDS has not been a catalyst for large-scale reform of health care financing. The chorus of voices calling for reform of the health care system has been growing louder in the early 1990s, but it seems to have less to do with AIDS and more to do with the realization that many of the working poor and middle class (nearly 40 million Americans) find private health insurance beyond their reach and public programs inadequate.
Early concerns about the ability of the private health care system to pay for AIDS care now seem somewhat alarmist. The direct medical costs of caring for persons with AIDS consumes 2 percent or less of national health expenditures. As noted above, AIDS has thus been described as a financing rather than a cost problem. This characterization, however, should not detract from the realization of the tremendous burden HIV disease poses for those who are afflicted with it, as well as for providers and governments in areas with high prevalences of HIV disease. The multifaceted impact of AIDS has meant that any financing reforms in response to the epidemic have tended to be of a piecemeal, tinkering-around-the-edges nature, rather than wholesale or systemic.
The HIV epidemic may also be having an impact on the training and recruitment of physicians and other health care workers, but the number of confounding variables makes it difficult to sort out the impact of HIV disease on the attitudes and behaviors of health care professionals. Some caregivers may be attracted by the challenges AIDS care poses; others may find the same challenges daunting. Some physicians may be wary of establishing practices among certain populations or in certain areas hard hit by AIDS, although in many instances those areas are where the most prestigious medical institutions and teaching centers are located. Further study will be necessary to determine the impact of HIV on the decisions of physicians and other caregivers about specialties and practice locations.
Perhaps the most profound impact of AIDS on health care has been a renewed appreciation of, and heightened attention to, the risk of bloodborne pathogens. These include, but are not limited to, HIV. Many health care workers who were trained in an era of scientific derring-do and medical hubris are coming to realize that medicine has always posed dangers for
practitioners. AIDS is prompting an extensive reassessment, not only of the scientific and technical aspects of those risks and how to quantify them, but of how conscience, codes of ethics, moral obligations, and legal duties affect practitioners' duties to treat patients who pose risks of potentially lethal infections.
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