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Care of Persons Infected with HIV The medical care of patients infected with HIV is a problem involving a complex, multisystem disease process, multiple hospitalizations, inva- sive diagnostic testing, and an extremely high mortality rate. Hospital- based medical services are particularly strained by these clinical features, and community-based services are strained additionally by the inadequate financial and social reserves of many patients and by the lingering fear of contagion associated with the epidemic. The background paper prepared for the committee by Green et al. (1986) provides more detail on the strains likely to be imposed on hospital services. This chapter, particularly the sections devoted to health care and psychosocial support, lays out what the committee feels is desirable for persons infected with HIV, particularly those with AIDS. Their needs for care In some instances are similar to those of other patients with catastrophic or terminal illnesses, such as cancer. While focusing on needs related to HIV, the committee believes that the health care system should strive to provide a desirable level of care for all patients. . . . ROLES OF HEALTH CARE PROVIDERS The newness of AIDS and the concentration of cases in a few geographic areas have hindered evolution of the most appropriate overall medical management of patients with HIV-associated conditions. HIV infection is a new condition, but the associated opportunistic infections and cancers occur in other situations. 139
140 CONFRONTING AIDS No satisfactory treatment for HIV infection is yet available, although a number of experimental drugs are undergoing testing in clinical trials (see section on "Antiviral Agents" in Chapter 61. While methods for the management of opportunistic infections and cancers in AIDS patients are evolving, thus far they have not significantly lengthened the survival time of these patients. Most physicians have not yet treated persons infected with HIV. However, physicians in all areas need to be aware of signs and symptoms of HIV infection so that early diagnosis can be made, enabling all infected individuals to receive prompt care and counseling to reduce transmission. As the AIDS epidemic grows, a variety of practitioners are becoming identified as "AIDS specialists"; not surprisingly, most to date have been infectious-disease specialists and oncologists. In addition, growing num- bers of clinical immunologists, pediatricians, and psychiatrists are under- taking the management of HIV-infected patients. Other practitioners who will probably develop expertise as AIDS specialists are neurologists and obstetricians. Because of the widening spectrum of disease manifestations associated with HIV infection and the variety of therapeutic skills that are needed to treat such patients optimally, it appears likely that a diverse group of practitioners will continue to provide care for AIDS patients. Most specialists currently involved in treating AIDS patients are hospital-based physicians. As the epidemic grows, practitioners in health maintenance organizations and in private practice will increasingly need to provide primary care to patients. Recommendations · Medical specialty and professional organizations should undertake educational activities for example, the distribution of materials designed to alert physicians, dentists, and other health professionals to the signs and symptoms of HIV infection, and the preparation of informative material for patients. · The National Center for Health Services Research and Health Care Technology Assessment should commission representatives from the relevant medical and health care specialties to assess periodically the treatment of HIV infection and associated conditions, to suggest optimal treatment, and to disseminate this information to health care providers. · Medical and dental education programs from the undergraduate through graduate and postgraduate levels should begin to incorporate both academic and practical training concerning HIV infection into their courses of study. · Because HIV infection is now geographically concentrated in a
CARE OF PERSONS INFECTED WITH HIV 141 relatively few areas of the country, it may be desirable for selected health care providers from other areas to have short-term training in high- incidence areas before the epidemic spreads to their purview. HEALTH CARE SETTINGS FOR AIDS PATIENTS Hospital Care The clinical course of AIDS is characterized by a progressive decline in immune competence and by repeated episodes of severe opportunistic infections, which lead to hospitalization for diagnosis and therapy. No single system of inpatient care will work equally well in all hospitals. Factors that influence the optimal system of hospital care include the type of hospital, the patient mix (as between homosexuals and IV drug users), and the number of AIDS patients cared for by the hospital. Some hospitals dealing with large numbers of inpatients with AIDS have established centralized, dedicated units for the purpose of delivering AIDS care (Volberding, 19851. Modeled largely on the first AIDS unit, located at San Francisco General Hospital, these units are similar in many respects to oncology wards. Typically, patients with AIDS are cared for in a discrete area of the hospital with nurses and psychosocial support staff trained for the task. However, as the epidemic grows, those hospitals with such units will not be able to house all of the AIDS and ARC patients who need care unless capital investment is undertaken to expand their facilities. Therefore, in the future such units may increasingly be used for only the sickest patients. Alternatively, other forms of care, such as that provided by AIDS teams, may be deemed more appropriate. However configured, a system where the care of AIDS patients is distributed among attending physicians and house staff is probably desirable because of the diverse medical needs of these patients. Such distribution of care can also help ensure adequate education of all medical personnel in what will become an increasingly common disease and prevent "burnout" of health care providers. The hospital epidemiology service (which has responsibility for infec- tion control) is often the organizational unit in the hospital responsible both for formal AIDS training of physicians, nurses, and ancillary staff and for handling day-to-day crises involving AIDS patient care and other employee concerns, such as contagion. These units are becoming increas- ingly overburdened by such demands. It is important that they be able to increase their personnel so that other functions crucial to overall hospital infection control are not compromised. The designation of a single infection-control practitioner as the AIDS contact person has been a successful approach in several hospitals.
142 CONFRONTING AIDS An important function of inpatient AIDS care is the efficient planning of patients' discharges from the hospital. Because the greatest costs for the overall care of patients with AIDS occur during hospitalization, reducing the hospital stay should reduce overall costs (Scitovsky et al., 19861. To do this, the AIDS staff can coordinate plans for eventual patient discharge and integrate these plans with the outpatient clinic and available commu- nity agencies. Outpatient Care The care of patients with a progressive and complex disease such as AIDS, if it is to be both comprehensive and cost-effective, must be directed as much as possible to the community. Yet this care must also include access to appropriate inpatient facilities when hospitalization is required, as it is in essentially all cases. These functions can best be served by a carefully coordinated approach to the outpatient medical management of patients with ARC or AIDS. Outpatient medical care of AIDS patients must take into account the multidisciplinary medical nature of the disease, the many psychosocial difficulties experienced by patients, and the social setting in which the disease occurs. For hospitals dealing with appreciable numbers of pa- tients with HIV-related disease, outpatient care is best delivered through a dedicated AIDS clinic. Such a clinic can, in its most developed form, bring together complementary medical subspecialists, such as infectious- disease, oncology, dermatology, and pulmonary medicine specialists. This organization both takes advantage of the specialists' expertise and facilitates exchange between them to improve the evaluation and treat- ment of the broad spectrum of HIV-related problems. A dedicated AIDS clinic with multidisciplinary representation can also decrease compliance problems and the duplicate ordering of typically expensive laboratory and invasive diagnostic procedures. A dedicated AIDS clinic can effectively use physicians trained in general internal medicine and family practice, who can provide an important broad base of patient care. These physicians can serve as models for the care of AIDS patients in private medical practice and in areas of the country with relatively small numbers of patients, where dedicated AIDS facilities are not yet required. An important element in the medical care of AIDS outpatients is the use of nursing staff and nurse practitioners (LaCamera et al., 19851. Nurse practitioners, for example, can provide extensive routine patient care, under appropriate guidance and supervision from physicians expert in the clinical aspects of AIDS. Furthermore, nursing staff provide an important role in patient education, often providing essential counseling services.
CARE OF PERSONS INFECTED WITH HIV 143 The overall needs of patients cannot be met unless the various outpatient services function in a well-coordinated manner. For this coordination to occur, the specific needs of the clinic's population must be considered, and key representatives of the professional staff must meet on a regular basis to review these needs. Another direct effect of this integration of medical care is the efficient use of both inpatient and community-based care. Maintaining confidentiality in outpatient settings will need due attention. Community-Based AIDS Care The real power of coordinated AIDS care plans is found in the integration of hospital and outpatient care with those facets of patient care based in the community (Abrams et al., 19861. Community-based care can be broadly defined as care occurring at a patient's residence to supple- ment or replace hospital-based care. At best, this care includes the administration of medications with nursing supervision, the use of home- based infusion of fluids and antibiotics, and home hospice programs delivering social support and palliative care in the terminal stages of the disease. In San Francisco, a third function in addition to nursing and hospice support has been added to the services available to patients with AIDS. Shanti, a volunteer community agency concerned with death counseling, organized a program known as the Shanti Project that, together with the City of San Francisco, provides small-group housing for patients with AIDS who otherwise would be unable to stay in independent residences. In this program, several patients share an apartment that is regularly monitored by volunteer Shanti staff members. These staff members assess the adequacy of support services for residents and of contact agencies, including visiting nurse services and a home hospice program, to alter services as the conditions of residents change. Also, residents can help care for each other, decreasing the need for attendant and homemaking services, which can be difficult to reimburse. (The situation in San Francisco is somewhat different from that in most other areas in that homosexual men constitute a higher proportion of AIDS cases, and there are few problems relating to addicted patients. It is also different in the degree of acceptance and cohesiveness of the homosexual community, which results in a large pool of volunteers to complement medical care.) Care of AIDS patients at their place of residence is possible even in very complex cases. However, it requires a substantial commitment from service agencies involved in delivering this care and careful integration of this care with more traditional systems of hospital-based care. As might be anticipated from the complex nature of the medical
144 CONFRONTING AIDS conditions caused by HIV, the potential demands on home nursing agencies are very large. At their most basic level, they include such essential home functions as shopping, cleaning, preparing meals, and maintaining personal hygiene. In most cases some of these services can be provided by the patient or by family, friends, and neighbors. Where such personal resources are nonexistent, services must be supplied. In some communities, volunteer agencies have provided many of these services. The Gay Men's Health Crisis in New York City, the Shanti Project and the San Francisco AIDS Foundation in San Francisco, and AIDS Project/LA in Los Angeles are prime examples of such agencies. In cities or in patient groups where sufficient volunteer support is lacking, these services must be provided and funded by private or public means. A serious limitation in many cases where basic services are needed is the amount of such care provided by insurance coverage (insurance issues are discussed later in this chapter). In many instances, insurance coverage is limited to services provided by registered or licensed nursing personnel, even though the true need may be for less specialized and less expensive attendant and homemaking care. In addition to relatively straightforward assistance in performing daily activities, AIDS patients at home often require more sophisticated and specialized nursing intervention. For instance, patients may require IV hydration because of persistent fevers, sweats, and/or diarrhea; they may need IV antibiotics for the treatment of AIDS-associated opportunistic infections; or they may require parenteral narcotics for the control of pain. For these and similar services, nurses are required, even if the need is sporadic. While many insurance policies cover such services, other sources of reimbursement, such as Medicaid, either do not cover them or do not provide enough reimbursement to allow efficient use of such services. As patients with AIDS become progressively more ill, the nature of their care often changes from aggressive management of AIDS-related illnesses to palliative support in anticipation of death. As this change occurs, management should ideally move from a conventional medical model to a hospice-oriented approach, which has been demonstrated to be very effective in the care of patients with malignant diseases (Martin, 19861. In the hospice system, treatment is designed to palliate symptoms rather than to reverse underlying disease processes. As with other community-based systems, some hospice support can be provided by volunteer agencies. In most cases, however, these are inadequate, and paid programs play a more central role. Here, as in all aspects of community-based care, reimbursement is an issue and can be problematic. Because reimbursement for hospice care is not provided by most insurance policies or by the government (excepting Medicare, with
CARE OF PERSONS INFECTED WITH HIV 145 certain limitations), specific sources of support must be sought, often from city or state agencies. The several components of community-based care residential-facility support, home attendant and homemaking care, home nursing care, and home hospice care obviously overlap so extensively that coordination of service planning is critical. To some degree this coordination should occur during the careful planning of responsibilities of involved agencies to minimize overlap. Still, communications between agencies are critical and can best be facilitated by regular meetings of key members of these groups. To further optimize this planning, hospital personnel representing both inpatient and outpatient care should also be included. In this way, as outpatient or inpatient nursing personnel recognize new needs of patients, these needs can be brought to the attention of community-based agencies for efficient planning. The care of patients with AIDS and other HIV-related conditions needs to take account of the fact that a significant proportion of patients (homosexuals or IV drug users) may not have access to the support traditionally provided by family members. Further, it may pose problems in small communities where the range of health care services for any condition may be limited. In some areas of high incidence, models of care entailing extensive community and peer support have been successful in shortening the length of hospitalization required by AIDS patients. Two major programs, funded by the Robert Wood Johnson Foundation and the Health Re- sources and Services Administration, are being established to investigate the transferability of models of care entailing extensive community support to other areas of the country and other population groups. Recommendations · Actions should be stepped up to cope with the projected burden of HIV-related illness on the medical care system. · Although more research is needed to define the best approaches to care in different settings, experience thus far favors inpatient care by units or teams with a nursing and psychosocial support stab trained in AIDS care and integrated with outpatient and community-based star. · For areas with a high incidence of HIV infection, where the financial impact of AIDS on health care systems will be great, attention should be given to the development of AIDS-dedicated outpatient clinics. These units should have a stab of pertinent medical specialists, generalists, nurses and nurse practitioners, and specialists in psychosocial problems. Nurses and other professionals with responsibilities for AIDS care should receive special training and social support.
146 CONFRONTING AIDS · Systems of community-based care should be provided, where needed, for AIDS patients. Such systems should be able to provide attendant or homemaking services up to 24 hours daily as needed and nursing staff able to provide IV hydration, IV antibiotics (including use of experimental agents in certain cases), parenteral narcotics, and basic physical assessments of additional HIV-related diseases requiring medi- cal intervention. Social work professionals should also be available to provide guidance and patient advocacy on housing, financial, legal, and insurance problems. · Home-based hospice support should be provided for the terminally ill. Such support should include assessment and palliative treatment of symptoms, including fevers, pain, and diarrhea; psychological support and bereavement counseling for patients, lovers, family, and friends; and assistance in the disposition of the deceased. · Arrangements should be made to provide housing support, including small-group housing facilities and/or supervised hotel accommodations, and transportation of patients between medical facilities and place of residence. · The use of volunteer agencies to assist in patient care and counseling should be encouraged (but services must be rendered by paid providers if volunteers are not forthcoming). · Representatives of existing agencies and health care providers should organize AIDS care groups to coordinate presently fragmented efforts. NEEDS OF SPECIFIC PATIENT POPULATIONS All AIDS patients present great demands on the systems of medical care. However, these demands are amplified even further in some patients, including those with AIDS who use IV drugs, infants with AIDS, patients with severe dementia, and patients who are institutionalized. In contrast to other AIDS risk groups, IV drugs users typically are socially and economically disadvantaged, with minimal, if any, social supports. Thus, the burden of their care falls almost totally on the medical system, with little expectation of assistance from family, friends, or volunteers. Durations of hospitalization for IV drug users with AIDS are said to be much longer than for homosexual men with AIDS. Also, their often-continuing use of narcotics makes the use of community-based group care settings much more difficult. Infants with AIDS may be the most tragic of all AIDS cases. Often born to mothers who use IV drugs, they frequently have no family support for their medical care and social needs. This situation is now reaching crisis proportions in New York City and Newark, New Jersey. In certain hospitals in these areas, 15 percent of pediatric beds are already occupied
CARE OF PERSONS INFECTED WITH HIV 147 by AIDS cases (M. Heagarty, Harlem Hospital, personal communication, 19861. There is a critical shortage of foster care families who are willing to accept these children, and many are therefore spending their entire lives in the hospital. Tragically, even children who are only seropositive, or who are seronegative but are known to have drug-addicted mothers, are difficult to place due to widespread fear of AIDS. During its deliberations, the committee was told that there are increasing numbers of children in New York City whose mothers and younger siblings have AIDS, who are themselves seronegative, and who are facing the loss of their entire families (Stoller, 19861. There is an urgent need for community social agencies to respond to this situation. Another set of patients who pose special problems are those suffering from necrologic complications. Patients infected with HIV have an extremely high incidence of central nervous system disease (Navia et al., 1986; Perry and Jacobsen, 1986; Snider et al., 19831. In the majority of cases, the resulting encephalopathy remains mild until death occurs from some other complication. But in some, and perhaps with increasing incidence, this encephalopathy progresses to severe and often fatal dementia over a period of several months. During this time continuous custodial care may be required. Irrespec- tive of the level of family or social support, these patients can almost never receive adequate care in a community-based setting, because they require 24-hour-a-day surveillance. Because extended care facilities, in almost all cases, refuse admittance to patients with AIDS, dementia will lead to extended use of acute care hospital beds unless alternatives are found. Most mental health professionals have the training and expertise to help patients with dementia. The problem therefore is not so much what should be done, but where and by whom. The chronic care inpatient and outpatient facilities available for such patients are already under pressure in terms of space and funding, and this pressure will only increase in the next few years as the number of AIDS cases increases. In some settings, particularly where the number of cases is high, problems may arise in staffing because of the psychological stresses involved in caring for terminally ill patients. These may be reduced by rotation of staff through particularly stressful situations and/or selection of staff who handle such situations well. Along with the usual problems associated with medical inpatients and outpatients, additional problems are posed when an individual with AIDS or an HIV-related disorder is institutionalized (for instance, in a psychi- atric hospital, penal facility, or hospice). The authorities responsible for such institutions have a responsibility for the health of all internees. However, the institution may not have the capacity to treat the patient's
148 CONFRONTING AIDS medical and psychiatric problems, and other patients, inmates, or care- takers may have a fear of acquiring AIDS (Douglas et al., 1985; Polan et al., 19851. No single remedy is applicable to all situations, but in most settings such patients can participate with others in general activities without posing a danger to themselves or others. Whatever the solution in a particular situation, there is no doubt that the cost of providing care in these facilities will increase as more patients with AIDS and HIV-related disorders are institutionalized. Overall, adequate inpatient and outpatient facilities are simply not yet available for many AIDS patients who lack insurance, financial resources, or a supportive network, especially in areas where the prevalence of AIDS is high (Nichols, 19851. This situation must be remedied. Moreover, chronic care facilities are often reluctant to accept patients with AIDS either because of the patients' medical requirements or because of fears of contagion (Cassens, 1985; Christ et al., 19861. As a result, some patients often stay for a prolonged period of time in a general hospital, increasing the cost both to the individual and to the public. PSYCHIATRIC AND PSYCHOSOCIAL SUPPORT Needs of Patients with AIDS In terms of general psychiatric management, patients with AIDS who are most severely ill pose the least perplexing problems. The problems may be severe, but they are familiar to mental health professionals who regularly see patients in the general hospital. For instance, a prominent psychiatric problem is depression (Holland and Tross, 1985; Tross, 19851. This depression is not simply a normal grief response to having a fatal illness, but rather a pathological process characterized by alienation, irrational guilt, diminished self-esteem, and, at times, pronounced sui- cidal thoughts (Perry and Markowitz, in press). These symptoms are related to conscious and unconscious conflicts about the way in which the disease was acquired and what it means to the particular patient. Psychotherapy, antidepressant medication, and precautions to prevent suicide may all be necessary. The psychiatric interventions for patients suffering from dementia are similar to those for the general management of mental disorders. A therapist can help these patients establish structure in their daily living, set limits appropriate to the patient's current capacities, decrease hypo- chondriacal preoccupations with reasonable reassurance, reduce self- destructive or impulsive acts, and help the patient with financial matters, including the preparation of a will. If available, family members should be counseled about providing the patient with custodial care and arranging
CARE OF PERSONS INFECTED WITH HIV 149 for eventual institutionalization if necessary, although these facilities will be increasingly difficult to obtain. Psychopharmacologic agents may be of help in severe cases (Perry and Markowitz, in press). Some AIDS patients may remain unreasonably hopeful about recovery despite the presence of their fatal illness. When the denial has become so extreme that it interferes with the patient's receiving palliative medical care or when it jeopardizes others because the patient refuses to practice risk-reducing behaviors, the denial must be confronted and treatment instituted. Compounding the psychological problems posed by AIDS (coping with death in a young adult, disfigurement, physical weakness, and pain) are psychosocial stresses that are more particular to the AIDS epidemic. These include ostracism by family, friends, and some physicians; lack of a supportive social network; and the paucity of facilities, funding, and health care providers (Morin et al., 1984~. In addition, most of these individuals realize that not only are they infected, but they are infectious. The realistic and irrational concerns about transmitting the virus to others places an enormous burden on an individual already profoundly con- cerned about his or her own health. Most trained mental health professionals with a basic knowledge of AIDS can provide the support, psychotherapy, and, if necessary, psy- chopharmacotherapy to treat the anxiety, grief, depression, hypochon- driacal preoccupations, alienation, and avoidance behavior experienced by these patients. More of a problem is finding clinicians available for this task as the epidemic becomes more pervasive. Existing voluntary agen- cies (such as the Gay Men's Health Crisis in New York City or the Shanti Project in San Francisco) have limited resources, and similar agencies are not available in most other locations. Although cost-efficient self-help groups are valuable for many, they are not applicable for all; some individuals have unique problems or are too concerned about issues of confidentiality to participate in a group process. In addition, public and private organizations have been sluggish in responding to the psychoso- cial needs of these individuals, in part because the epidemic has been largely confined to homosexual men and IV drug users. Needs of Patients with ARC ARC patients present particularly difficult problems because of ARC's complex spectrum. Some patients with severe ARC, who may suffer from problems such as dementia, cachexia, and intractable diarrhea, may be more incapacitated than some patients with AIDS. Longitudinal studies have been conducted in which homosexual pa- tients with AIDS or ARC have been psychologically assessed using
150 CONFRONTING AIDS standardized instruments over a one-year period and compared with healthy homosexual men (Tross, 1985~. Not surprisingly, all three groups show a high level of distress. Interestingly, however, the ARC group showed the greatest psychological problems. For patients with ARC, physical symptoms that previously would have been ignored a dry mouth, a mild cough, a slight rash could respectively be an early sign of thrush, an opportunistic pneumonia, or Kaposi's sarcoma. Some ARC patients even express a sense of relief when a disease process diagnostic for AIDS is found. ARC patients may be incapacitated by anxiety. Especially in patients with mild ARC, the health care provider must encourage appropriate, but not excessive, use of medical facilities. Needs of Patients with Subclinical HIV Infections Patients with HIV infection but no clinical symptoms are often referred to as being "asymptomatically" seropositive. However, they often expe- rience extreme anxiety and depression when they learn of their positive antibody status (Pindyck et al., 1986~. Overall, however, no conclusive data are yet available regarding the psychological effects of antibody testing. Nor are data available to document that the results of antibody testing reduce risk-related behaviors over an extended period of time. The available preliminary data from the American Red Cross, the military, the Greater New York Blood Center, and the California alternative testing sites indicate that although individuals who are informed that they are seropositive are understandably distressed, the immediate consequences of such information have not been dire. The proportion having immediate suicidal thoughts or intent is low. Furthermore, many individuals find the information helpful in that it relieves uncertainty about whether or not they are seropositive, helps them in family planning, and encourages seronegative individuals to maintain their seronegativity. Mentioning these potential benefits is in no way intended to minimize the acute and chronic stress imposed by antibody testing. A positive antibody test may increase a person's use of medical services. As with ARC patients, these individuals understandably may be more concerned that a viral upper-respiratory-tract infection or bronchitis may be due to a potentially fatal infection. Thus, medical attention may be sought, and the health care provider, also anxious about the possibility of more serious disease, may perform more testing than otherwise would be warranted. Appropriate medical care for otherwise well HIV-infected individuals is difficult to define. A balance must be struck between the rapid identifica- tion of serious disease processes and the tremendous burden on health
CARE OFPERSONSINFECTED WITH HIV 151 care systems if the testing required to make these diagnoses is not used judiciously. Needs of Seronegative Persons Persons who do not have HIV antibodies but who are at risk for infection are often psychologically distressed despite their seronegativity. This distress, which is sometimes acute, may be related to the fear of impending seroconversion among individuals whose recent behaviors (e.g., IV drug use or "unsafe" sex) have placed them at risk of infection. Stress commonly also results from the fact that these persons must alter their future behavior to avoid infection (Holland and Tross, 1985; Morin et al., 19841. Providing counseling and other psychiatric interventions for these individuals may reduce their psychological problems and also may help prevent the spread of the epidemic. Clinicians can counsel homosexual men about the need to practice safer sex, or they can use the psycholog- ical distress experienced by an IV drug user as a catalyst to promote rehabilitation for this disorder. However, resources for IV drug users such as methadone maintenance clinics have become increasingly limited, and referral for such care may be difficult until appropriate resources become available (see Chapter 41. Seronegative individuals who are not in high-risk groups may also need assistance in coping with the epidemic. For example, the care of patients with HIV-related disorders places an inordinate stress on providers of care (Christ et al., 19861. Factors contributing to this stress include the relative youth of these patients, fears of contagion, prejudice against high-risk groups, unfamiliarity with AIDS-related issues, the intensive care required for patients with AIDS, and the high prevalence of this disorder in some geographical areas, which limits training in the treatment of other medical conditions (in some hospitals in New York, 25 percent of the medical beds are taken by patients with AIDS). Psychiatric interven- tions for these providers of care include workshops to educate them about the disease, rotations to services with fewer HIV-related disorders, and opportunities to express their rational and irrational fears and despair regarding the care of patients with HIV-related disorders. These inter- ventions should not be restricted only to those involved in direct patient care but should be extended to those ancillary caretakers (e.g., atten- dants, nurses' aides, dieticians, janitors, morticians) who are also stressed by the presence of these patients and may have unwarranted concerns that lead to inappropriate behavior and rejection. Family members, lovers, and friends are also stressed by their involve- ment with individuals who have an HIV-related disorder. For example,
152 CONFRONTING AIDS the parents of children with AIDS may be ostracized from the commu- nity, feel guilty about keeping their child's status a secret so that he or she may attend school, or have concerns about becoming infected them- selves. Because the problems experienced by these associates vary enormously, no single approach is appropriate. The important point is that the psychosocial needs of these individuals should not be ignored. Many persons with no known risk factors develop an inordinate concern about having AIDS or getting it and may present to clinicians, insisting upon laboratory tests to rule out HIV-related disorders. The management of these patients is similar to the well-described management of hypochondriasis and other somatoform disorders. The unwarranted fear of acquiring AIDS in many individuals is determined in part by ignorance, displacement, and the newness and uncertainty of the AIDS epidemic. This fear can lead to irrational concerns, to irrational recom- mendations such as quarantine, or to frequent visits to physicians for vague complaints. Those overwhelmingly preoccupied with the disease may require psychotherapy (Perry and Markowitz, in press). Efforts to increase public understanding of the disease should, however, ameliorate these problems to some extent. Recommendations The committee believes that the following measures would help in planning for the provision of effective psychosocial interventions for those affected by HIV infection: · The efficacy and cost-effectiveness of various psychosocial interven- tions should be assessed for seropositive and seronegative populations, for those with psychopathological reactions to having AIDS or ARC, and for those who are not in high-risk groups (e.g., family, friends, caretakers, the general public). · Educational material should be developed and tested for use with those psychosocially stressed by AIDS-related disorders. · The impact of psychosocial interventions on different categories of high-risk individuals should be measured to determine which groups are preferable targets of effort to limit the spread of HIV. · Psychiatry staff must be able to assess patients' mental status so that the courts can determine competence in cases of dementia. · Additional funding will be necessary to provide sufficient chronic care facilities, partial hospitalization, outpatient units, drug rehabilitation centers, and home care to meet the psychosocial requirements of those with HIV-related disorders and to provide the additional staffing and
CARE OF PERSONS INFECTED WITH HIV 153 support in existing facilities because of the unique psychosocial require- ments of patients with HIV-related disorders. ETHICAL ASPECTS OF PROVIDING CARE The AIDS epidemic presents many situations in which ethical consid- erations are pertinent (Jonsen et al., 19861. Patients with AIDS, ARC, and other manifestations of HIV infection have a right to an adequate level of health care just as all other members of society do. (The implications of society's obligations in regard to the financing of care are discussed briefly at the end of this chapter. A fuller discussion of these issues can be found in the report of the President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research (1983b).) Health professionals also have an ethical obligation not to avoid infected persons or to discriminate against them in providing care, as discussed by the American College of Physicians and Infectious Diseases Society of America (19861. In the early days of the AIDS epidemic, a minority of health professionals shunned AIDS patients or inappropri- ately publicized the character of patients' diagnoses. There continue to be isolated reports of health care providers who refuse to care for AIDS patients, seropositive individuals, or even patients who are merely members of high-risk groups. Those at risk of transmitting HIV also have an ethical obligation to protect others from becoming infected. In the health care context, this means refraining from donating blood, semen, body tissue, or organs. Patients who are potentially infectious should also notify health care providers so that they can take proper precautions. In the context of personal relations, this obligation means taking precautions, such as adopting "safer sex" practices or not sharing IV injection equipment, to prevent passing the virus to others (see Chapter 41. This obligation pertains both to those known to be infected and to those at risk of being infected (unless there is certainty that they do not harbor the virus). As epidemiologic evidence has accumulated on the extremely low risk of health care workers' being infected by AIDS or ARC patients or seropositive individuals, many of the initial fears of health professionals have been allayed. The best available evidence suggests that HIV is less infectious than hepatitis B. cytomegalovirus infection, or tuberculosis. Standard precautions against exposure to blood and body fluids are prudent and will protect health care workers (Public Health Service, 19851. A second implication of society's obligation to provide care for persons infected with HIV has ramifications for both health care providers and the health care system. During the final months of their tragically shortened
154 CONFRONTING AIDS lives, AIDS sufferers should be provided with appropriate terminal care according to their wishes (a patient, of course, has a right to refuse care). A critical factor in fulfilling this obligation is respect for the wishes of patients about their treatment. There are a variety of legal and practical mechanisms for effectuating patients' wishes regarding terminal care. These range from discussions with friends, family members, or care givers to a more formal recording of a "living will," a document recognized in many states to allow a patient to make his wishes known while still competent to do so (Lo et al., 1986; Raffin et al., 19861. In virtually all states, legislation exists making possible a durable power of attorney, but in some states this may not specifically mention terminal health care. It is desirable that, where necessary, legislation be amended or introduced to specifically allow a patient to designate others as proxies to make decisions about terminal care in the event that the patient becomes mentally incompetent. This is especially important with many homosexual patients with AIDS, who may wish to invest a friend or lover with such decision-making authority, where otherwise only family mem bers would have legal standing. Finally, there is the question of when in terminal care treatment should be stopped, particularly if there is not an expressed wish, a living will, or a durable power of attorney. The committee recognizes all these ethical issues as important and recommends the report of the President's Commission for the Study of Ethical Problems in Medicine and Biomed- ical and Behavioral Research (1983a) to those wishing to consider them further. The necrologic complications and dementia frequently associated with HIV infection underscore the need to determine early in the course of the illness the patient's wishes in regard to respiratory assistance, cardiopul- monary resuscitation, admission to intensive care units, and other forms of aggressive therapy. At San Francisco General Hospital, for example, physicians are encouraged to discuss "Do not resuscitate" orders with patients within 72 hours of admission. A survey of 118 homosexual patients at that institution revealed that most had thought about life- sustaining treatment, wanted to discuss their views with care givers, and could cope emotionally with such discussions. Moreover, it was found in this small initial study that it would be difficult to predict patients' preferences without such discussions (Steinbrook et al., 19861. That these talks do not always take place may be a function of the reticence of either party or a feeling that broaching such issues might undermine confidence of patients in care they are to receive. Some, especially outpatients, may deny the gravity of their illness. Another barrier to discussion may be the diffusion of responsibility among various care givers. The committee regards it as highly desirable that AIDS patients be
CARE OF PERSONS INFECTED WITH HIV 155 given specific opportunity and encouragement to make their wishes regarding terminal care known to those providing their care. Hospitals, other settings for terminal care, and health care providers should offer this opportunity early in a patient's illness. Another factor in fulfilling society's obligation to provide care is the provision of a variety of settings in which AIDS patients can spend their final days. These settings should include their own homes, specially created group homes, hospices, and long-term care facilities. The city and county of San Francisco have demonstrated how such systems of terminal care can be developed for middle-class AIDS patients. The challenge for the future will be to adapt appropriately the San Francisco model and to test other models in other settings where AIDS patients come from a diversity of ethnic and socioeconomic backgrounds. COSTS OF HEALTH CARE FOR HIV-RELATED CONDITIONS The direct health care costs resulting from HIV infection include those attributable to the following: · pre-test and post-test counseling associated with serologic testing · detection of infection by serologic testing and confirmation · monitoring of asymptomatic infected individuals · diagnosis of the range of conditions associated with ARC and AIDS and their treatment, including ambulatory care, inpatient acute care, chronic care in hospices and custodial facilities (e.g., for dementia), and the various forms of extensive outpatient support The cost of treating manifestations of HIV infection in any particular case will vary with the marked differences in signs and symptoms and length and severity of illness among various patients. Costs also differ among approaches to case management in different settings. Information is lacking for calculating costs for the spectrum of condi- tions associated with HIV infection. Some attempts have been made to determine these costs, but the efforts have mostly been directed to costs of inpatient treatment in acute care hospitals. Much less is known about costs in outpatient hospital clinics, physicians' offices, and long-term care facilities. Little is known about the costs of home-based services. Still less is known about the value of the services provided by family members, lovers, friends, and others in support of the terminally ill person's basic activities of daily living. Though such supportive care is generally not classified as personal health service, it requires diversion of economic resources that substitute for long-term institutional care or home-based care by health professionals. Except for some evidence on the costs of screening and first-time counseling, very little is known about
156 CONFRONTING AIDS the use of health care services among persons who are seropositive but do not necessarily have signs or symptoms of overt disease. Direct Costs of Care for AIDS Patients A range of estimates has been made of the costs of care for AIDS patients. Most studies have focused on direct health care costs, including patient care in and out of the hospital, physician services, drugs, laboratory services, nursing, and home health care. Researchers have computed both incidence-based and prevalence- based measures of health care costs for AIDS victims. In the incidence- based approach, the average lifetime cost per case is estimated from date of diagnosis to date of death. By contrast, prevalence-based analyses estimate the average cost per unit time incurred by a patient alive at any time during that particular time period. Incidence-based computations are useful for assessing the financial burden of a diagnosis of AIDS on any given person. Prevalence-based estimates are useful for assessing the aggregate cost of AIDS care in a particular month or year. Estimates of the average lifetime cost per AIDS case, from diagnosis to death, range from about $50,000 to about $150,000 (in current dollars). Estimates of the average annual cost per prevalent case of AIDS range from about $20,000 to about $60,000 (in current dollars) (Hardy et al., 1986; Kizer et al., 1986; Meskin and Klemm, 1986; Scitovsky et al., 19861. The wide range of estimates reflects differences in data sources and methodology. The low estimates derive from California data and the higher estimates from New York sources (reflecting in part a large proportion of IV drug users, who typically have underlying illness). There is considerable evidence that the inpatient treatment of AIDS varies by region of the country. The average length of inpatient stay, in particular, is markedly lower in San Francisco than in New York City, Boston, and even in other parts of California (Scitovsky et al., 19861. Whether the costs of treatment outside the acute care hospital show a similar geographic variability is unknown. There is evidence that at certain acute care hospitals, the real costs of inpatient treatment for an average episode of opportunistic infection among AIDS patients may have declined over time. Among the explana- tions for such a decline are diminished use of private hospital rooms for isolation, increased training and experience of physicians and nurses, increased use of separate inpatient facilities dedicated to AIDS care, and earlier discharge to home or other health care facilities. It remains unknown whether other types of medical care expenditures have shown a similar trend. Several factors have been identified as contributing to the high costs of
CARE OF PERSONS INFECTED WITH HIV ~157 treating AIDS patients. These include successive hospital admissions; long lengths of stay due to severe medical complications; more-intensive nursing care; greater use of intensive care units; greater use of pharma- ceuticals, many of which are expensive and/or experimental; greater use of specialized diagnostic and therapeutic equipment; greater use of supplies to maintain infection control; and lack of alternative control systems (Boufford, 19851. The treatment of AIDS patients in the hospital requires the use of certain procedures and precautions that generate additional expense for the hospital (Green et al., 19861. Special infection-control precautions necessary to prevent transmission of AIDS to health care workers and other patients require greater use of protective clothing similar to that recommended for hepatitis. Personnel must be trained in the prevention of transmission of bloodborne infections. Additional costs include the disposal of contaminated articles and infectious waste, which requires greater use of special equipment and bags than for non-AIDS patients. Although the Centers for Disease Control has stated that private rooms are not necessary for AIDS patients unless the patient's illness precludes the practice of good hygiene, many hospitals have elected to use private rooms. This additional expense is not usually covered by insurance and must be absorbed by the hospital (Green et al., 19861. Several studies have examined the additional staff requirements for AIDS patients and have suggested that more nursing time is required for these patients than for others. A majority of this additional time is spent on hygiene, a task that could be performed by ancillary staff (Belmont, 1985; Greater New York Hospital Association, 19861. The costs of treating hospitalized AIDS patients vary according to the patient. Generally, costs have been found to be considerably higher when associated with the treatment of Pneumocystis carinii pneumonia. Pa- tients with Kaposi's sarcoma often require fewer hospital admissions, and their treatment can often be handled on an outpatient basis (Arno and Lee, 1986; Belmont, 1985; Scitovsky et al., 19861. The type of patient whether homosexual, IV drug user, or pediatric- also influences costs. IV drug users usually have underlying poor health when entering the hospital and tend to have a higher rate of opportunistic infections. Both IV drug users and pediatric cases tend to have longer hospital stays (cumulatively) due to lack of support systems and alterna- tive care facilities (Belmont, 19851. Studies of costs so far have pieced together data collected from individual investigations, resulting in a fragmentary picture. The estimate by Hardy et al. (1986) of lifetime hospital costs, which was estimated from New York City data on the number of days of hospitalization following initial admission, is now recognized as being high primarily because no
158 CONFRONTING AIDS comprehensive data were available on the total length of hospitalization. The computations of Scitovsky et al. (1986) represent unbiased estimates of health care costs for AIDS patients of different types at San Francisco General Hospital during a specific year. Whether they are applicable to other patient populations at other time periods is not clear. Even Scitovsky's estimates, as the author acknowledges, are subject to sub- stantial measurement uncertainty. Another limitation of the current data concerns the present manner in which information on the cost of treating HIV-associated conditions is recorded in most hospital or state data systems. This recording does not now lend itself to easy compilation for analysis. To take an obvious example, AIDS patients are not often identified as such. A study by the California Department of Health Services (1986J reports that a major impediment to data collection and cost analyses is the lack of any specific ICD (International Classification of Disease) code for AIDS or other HIV-related conditions. In addition, with the exception of Scitovsky's study, all of the studies have been limited mostly to costs associated with inpatient treatment in acute care hospitals. Much less is known about the use of and the costs associated with outpatient clinics, physicians' offices, long-term care facilities, and home health services for AIDS patients. Costs of Care for ARC Patients and Seropositive Individuals Comprehensive calculation of the costs resulting from HIV infection would include not only those associated with AIDS but those associated with ARC patients and persons who are clinically asymptomatic but seropositive for HIV. Virtually nothing is yet known about these costs, but there are several reasons, including the following, to believe that they may be substantial: · Even though the cost of care for a seropositive individual or ARC case may be lower than that for an AIDS case, the much larger numbers of the former (Curran et al., 1985) mean that the aggregate costs associated with them may be greater. · The costs of care for these patients may be incurred for many years, whereas AIDS is usually fatal within one to two years. · With increased use of the serologic test for HIV antibodies, a much larger proportion of the 1 million to 1.5 million people currently estimated to be infected with HIV in the United States will become aware of their serologic status, and many of these individuals will subsequently have regular contact with the health care system. The total number of infected persons will also increase.
CARE OF PERSONS INFECTED WITH HIV 159 · The necrologic and psychological manifestations of HIV infection can be severe, and the provision of care for such conditions is expensive. Indirect Costs of HIV-Related Conditions In addition to the direct costs of health care for individuals infected with HIV, there are undoubtedly large indirect costs associated with HIV-related conditions. These include the loss of wages for sick individ- uals and the loss of future earnings for persons who are permanently incapacitated or die prematurely because of illness. Estimating these losses, however, is subject to problems in choosing what to include in a comprehensive calculation. For instance, should levels of anticipated earnings be included? Should the savings in health care expenditures when a person dies prematurely be taken into account? How are social security and pensions to be taken into account? The committee is unaware of any studies that attempt to estimate the future magnitude of indirect costs associated with AIDS or ARC patients or seropositive individuals. Because of the methodological problems inherent in such estimates and because of the limited time and resources available to it, the committee did not attempt to measure these costs, but it has no doubt that they will be substantial. Cost Implications of Projected AIDS Cases The Public Health Service has estimated that 71,000 individuals with AIDS will be alive at the beginning of 1991 and that 74,000 new cases will be diagnosed in that year (see Appendix G). It assumed that underreport- ing or underascertainment of cases will amount to 20 percent of the total reported AIDS cases, adding 29,000 more AIDS cases to the total for 1991. For these 174,000 AIDS patients alive at some point during 1991, the Public Health Service has estimated that the total costs of care in that year will be $8 billion to $16 billion. The $8-billion figure is based on unit costs from Scitovsky et al. (19861. The $16-billion figure represents adjustments to produce a worst-case scenario. It takes into account that the estimates by Scitovsky for San Francisco may be on the low side nationally, that the population projections are midrange, and that the earlier cost estimates (Hardy et al., 1986) have been higher. In all likelihood, the $8-billion to $16-billion projection represents a low estimate for the total annual costs in 1991 associated with HIV infection. It does not include the costs associated with ARC patients and seroposi- tive individuals and does not take into account the fact that many of the AIDS patients alive in 1991 may be receiving experimental therapies. In
160 CONFRONTING AIDS addition, should treatments become available that extend life but do not cure the underlying disorder, costs will be even greater. Other questions have also emerged regarding the future financial burden posed by AIDS. As methods of treating opportunistic infections become more effective, thus prolonging life expectancy, what will be the increased burden in terms of costs? What will be the burden on those cities having large numbers of AIDS cases- specifically, on public or charity hospitals that will undoubtedly have a disproportionate share of AIDS patients who are IV drug users with little or no financial support? What additional drain on health care resources will be imposed by the apparent shift in presenting clinical manifestations (Volberding, 19861? For instance, will there be less Kaposi's sarcoma and more necrologic damage and dementia? Projected Hospitalization Facilities In a background paper prepared for the committee, the impact of the AIDS epidemic on hospital resources was assessed in terms of bed need and hospital costs (Green et al., 19861. Based on the PHS projections of the number of AIDS cases by 1991, inpatient data on the average length of stay, lifetime hospitalization, and inpatient and outpatient treatment costs (as estimated by Scitovsky et al., 1986), Green and co-workers (1986) derived the following estimates. Nationally, by 1991 AIDS cases alone will probably require more than 1 percent of all available hospital beds and amount to more than 3 percent of total hospital costs. This approaches what is being experienced in New York City in 1986. In absolute terms, the 145,000 AIDS cases expected to be alive in 1991 (unadjusted for underreporting; see Appendix G) will use 4.6 million hospital bed days, with the majority of this use occurring outside of San Francisco and New York City. This total (4.6 million) is in excess of the number of bed days devoted to lung cancer (3.36 million) or motor vehicle accidents (3.54 million) in 1980. In San Francisco, AIDS cases will use 9.5 percent of available hospital beds, with 19 cents of every dollar spent on inpatient and outpatient treatment going to the care of AIDS patients.~In New York City, more than 4 percent of all hospital beds will be occupied by AIDS patients by 1991, with much of this use concentrated at municipal and charity hospitals, and care for AIDS patients will consume more than 8 percent of total hospital treatment costs for the area. AIDS patients often require more emotional support from nursing staff than do non-AIDS patients, as well as more direct patient care. AIDS patients also require more nursing care in intensive care units than do non-AIDS patients because of the frequent development of multisystem
CARE OF PERSONS INFEC TED WI TH HI V ~ 6 ~ failures. Additional costs of treating AIDS patients are incurred in other hospital service areas, including housekeeping and dietary services. An AIDS patient's room takes much longer to clean than that of a non-AIDS patient. Ancillary procedure rooms also take longer to clean after use for AIDS patients. For reasons explained in Chapter 3, uncertainty surrounds the projec- tions of future numbers of AIDS cases, but they are based on the best available data and are indicative of the magnitude of the problems to be expected. The implications of these future demands on available re- sources are especially striking when compared with present levels. For San Francisco the projected use of hospital beds and total hospital treatment costs for 1991 are nearly five times the present requirements; for New York City the consumption levels are more than double those for 1986. Those cities and other urban areas that will handle a large number of AIDS cases will have to provide a great deal of additional care. Hospital beds may be available in some areas of excess capacity, but the strain on general resources for care is likely to be considerable. For cities having large numbers of IV drug users, the strain will be particularly great on their municipal hospitals. In New York City, AIDS patients who are IV drug users may occupy more than 10 percent of municipal hospital beds by 1991. By illustrating the magnitude of the problem to be faced, only a small part of which is presently avoidable, such projections reemphasize the need for immediate planning to cope with the AIDS epidemic. Conclusions and Recommendations The costs of care for AIDS and other HIV-related conditions will add a large and unavoidable burden to the U.S. health care budget into the next century. To design an efficient and reasonable scheme for financing these expenditures, a sound data base is needed to ascertain the relative costs and effectiveness of inpatient hospital treatment, outpatient and home care, hospice care, and other types of health services. · Ways should be sought to facilitate the collection of information on all aspects of the costs of care for HIV-related conditions, especially AIDS and ARC, with complete confidence that patient confidentiality is ensured. Collection of information can probably best be helped by the design and use of specific diagnostic categories for AIDS and HIV-related conditions. Studies of the costs and effectiveness of alternative forms of care need to distinguish among various manifestations of HIV infection, including Kaposi's sarcoma, opportunistic respiratory and gastrointesti- nal infections, and necrologic disorders.
162 CONFRONTING AIDS · All demonstration projects or other approaches to the provision of care for HIV-associated conditions should be designed so that it is possible to compare outcomes (longevity, quality of life) and thus the effectiveness of care. The National Center for Health Services Research and Health Care Technology Assessment (possibly in conjunction with other organizations e.g., the Health Care Financing Administration) should commission an appropriate group to provide advice on the minimal data collection requirements to evaluate care modalities in demonstration projects or major centers providing care. Guidelines for data collection should, at a minimum, address (1) patient demographic data, (2) medical status at study entry, and (3) outcome measures (possible measures include longevity or the number of days spent out of the hospital as a surrogate for quality of life). Establishment of such guidelines is urgently required in light of the imminent funding of a number of major projects. Also, it is desirable to rapidly establish optimal modalities for cost- effective care before the anticipated large increases in the number of patients take place. · Funding for the health services research described above should be provided by the federal government, by the states, and by other organi- zations such as foundations and providers of health insurance. FINANCING OF HEALTH CARE FOR HIV-RELATED CONDITIONS The financing of care for AIDS patients must be examined in the context of how other medical and health services are financed. In the United States, financing for health care is accomplished through a variety of arrangements, both public and private. Public programs include Medicaid, Medicare, the Veterans' Administration, the Indian Health Service, and other special programs. Private programs encompass a variety of insurance plans. Sources of Financing Medicaid Most of the public funds that presently finance care for AIDS patients flow through the Medicaid program. The Health Care Financing Admin- istration has estimated that 40 percent of AIDS patients are being served under state Medicaid programs at any given time (Smith, 1986~. In some areas, up to 69 percent of AIDS patients are receiving Medicaid benefits (Boufford, 19854. AIDS patients primarily qualify for Medicaid by being
CARE OF PERSONS INFECTED WITH HIV 163 classified as disabled and by meeting income and asset criteria established for Supplemental Security Income (SSI) (Smith, 19861. A 1983 directive by the Social Security Administration's Office of Disability Programs enables a person who has met the CDC definition of AIDS to be presumed disabled for purposes of SSI eligibility. If a patient meets income standards, he or she can qualify for this program and in most states can receive Medicaid benefits through a shortened determi- nation process. Two-thirds of the states have adopted this procedure. If persons with AIDS do not qualify for the SSI program, they may become eligible for Medicaid through the spend-down process in those states that have a medical indigence program (Smith, 19864. Federal regulations prohibit a state Medicaid agency from creating special services or expanding benefits for those with a specific disease. However, for AIDS patients eligible for Medicaid, a cluster of services can be offered to resemble a similar service that is not reimbursable (e.g., a hospice-like package). The Consolidated Omnibus Budget Reconcilia- tion Act of 1985 (U.S. Congress, 1986) allows state Medicaid offices to provide hospice care as an optional service. Under Medicaid, states can implement alternative approaches to pro- viding care, such as case management and home- and community-based and hospice-like care programs, through waivers that are subject to review and approval by certain federal agencies (e.g., the Health Care Financing Administration) (Smith, 19861. To obtain agency approval for these waivers, states must (1) document the cost-effectiveness of the project, (2) describe the effect of the project on recipients, and (3) describe what the project hopes to achieve and how it is consistent with the Medicaid program. Funding of home-, community-, and hospice-based care, in conjunction with hospitalization as necessary, is generally a more appropriate (and probably more cost-effective) approach to providing care for individuals with AIDS and other HIV-related conditions than is prolonged hospital- ization. However, as of June 1986 no state had applied to the Health Care Financing Administration for the waivers necessary for such care to be covered through the Medicaid Program (Smith, 19861. The committee is concerned that pursuit of funding to support community-based care be a priority goal in the provision of health care for HIV-related conditions, including AIDS. States are urged to negotiate with all possible sources of support for such care (e.g., Medicaid, the Health Care Financing Administration, insurance companies) to develop mutually advantageous and cost-effective reimbursement strategies that adequately cover such care. The present and future impact on the Medicaid system from financing AIDS care has not been thoroughly assessed. However, the Health Care
164 CONFRONTING AIDS Financing Administration has established that the federal share of Med- icaid coverage of AIDS patients in 1985 was $50 million. This amount is expected to double in 1986, but the figure still represents less than 0.5 percent of the total federal share of the Medicaid budget for 1986 (Meskin and Klemm, 19861. A study by the California Department of Health Services (1986) of AIDS patients covered by Medi-Cal (the California Medicaid program) estimated that the amount paid for AIDS patients in FY 1984-1985 was $4.5 million. If the costs of care for HIV-infected patients not meeting the CDC definition of AIDS are included, this amount becomes $5.3 million. Based on projections of the number of AIDS cases in California through 1991, Medi-Cal reimbursements for AIDS patients are expected almost to double annually, reaching $96.3 million in FY 1990-1991. This estimate assumes that 12 percent of all AIDS patients in California will be covered under Medi-Cal. Similar projections for Medicaid financing of AIDS patients in New York State are not available. However, in New York the burden on Medicaid could be much higher because of the larger number of AIDS cases in New York and the significantly larger proportion who presently receive Medicaid benefits (Scitovsky et al., 19861. Notwithstanding changes that might occur in the eligibility status of AIDS patients, it is clear that public financing mechanisms frequently do not fully meet the costs incurred in treating these patients. Some hospitals report that the uncompensated costs of care for AIDS patients can be four times higher than for other patients (Belmont, 1985; McHolland and Weller, 19851. The reimbursement rate under Medicaid is estimated to be as much as 60 percent less than the actual costs incurred from the treatment regimen for an AIDS patient (Belmont, 1985; Boufford, 19851. For municipal hospitals in some areas, such as New York City, the difference must be met by city revenues. In other areas these unrecovered costs are compensated for by hospitals' increasing charges for private patients. To date, 40 percent of the national total of approximately 24,500 AIDS cases have occurred in New York City and San Francisco. In these locations, provision of care has often been through particular centers. Where the level of reimbursement is less than actual costs, this may place a particular burden on these institutions and on the revenue systems that support them. However, the Public Health Service has estimated that by 1991, 80 percent of the cumulative total of 270,000 AIDS cases will be outside these two cities (see Appendix G). Thus, the increase in absolute numbers of cases outside the centers presently affected will be dramatic. Similar problems will therefore arise in many parts of the country.
CARE OF PERSONS INFECTED WITH HIV 165 Medicare Medicare contributes to financing health care costs of the elderly (those over 65), the permanently disabled who meet disability insurance eligibil- ity requirements, and those with end-stage renal disease. Because of the demographics of HIV-related disease (which currently affects individuals primarily between ages 20 and 45), AIDS or ARC patients would only qualify for Medicare under its disability program. To be eligible for Medicare under the Social Security Disability program, disabled workers must first meet the requirements for "insured status" by having made, as employees, certain contributions to the disability trust fund. They then must be considered disabled according to the social security definition: that is, they must be unable to engage in any substantial gainful activity by reason of an impairment that can be expected to result in death or to last for a continuous period of not less than 12 months. After receiving social security cash benefits for two years, disabled beneficiaries may begin to receive benefits under Medicare. However, due to the often rapid progression from a diagnosis of AIDS to death, few AIDS patients survive the 24-month waiting period and are therefore ineligible for Medicare benefits. Presently, only 1 to 3 percent of AIDS patients are being served under Medicare (Smith, 19861. However, Medicare could become a significant source of payment if changes were made in the disability waiting period or if new drugs or other patient management improvements prolong survival past the two-year waiting period. Private Insurance An estimated 85 to 88 percent of all Americans have health insurance coverage. This coverage is provided through a wide variety of plans offered by insurance companies, Blue Cross and Blue Shield plans, and health maintenance organizations. In a background paper prepared for the committee by Lifson and Lierberman (1986), these forms of coverage are described in detail. Private insurance covers a significant proportion of the costs for AIDS care, ranging from 13 to 65 percent in various hospitals (Scitovsky et al., 19861. Improving the Coverage of Health Care Costs Although many individuals have health insurance, 50 million Ameri- cans have inadequate coverage and 30 million under the age of 65 have none (Congressional Research Service, 19861. Generally, the reasons for
166 CONFRONTING AIDS this inadequate coverage are lack of employment, jobs without fringe benefits, or the fact that these individuals are poor medical risks. In addition, one in five American families, 16 million families altogether, incur medical costs that exceed 5 percent of their gross income (Congres- sional Research Service, 19861. The burden of paying for health care that is not covered by insurance falls on the recipients directly, on health care providers, and on existing public finance systems. Several legislative proposals have been introduced in Congress in recent years to address these issues. Of the proposals that have passed, the Consolidated Omnibus Budget Reconciliation Act of 1985 (U.S. Congress, 1986) is the most pertinent to AIDS. This act makes persons whose employment has been terminated, in most circumstances, eligible for 18 months of continued health insurance coverage, for themselves and their dependents, at 102 percent of the employer's cost if they worked for an employer with more than 20 employees. At the end of the continuation period, a conversion policy will generally be available. The provisions of this legislation could be used by ARC or AIDS patients whose employ- ment was terminated. However, its usefulness is limited by the require- ment of prior employment. In addition, a U.S. Department of Health and Human Services task force is currently examining various options for dealing with catastrophic health costs and incomplete coverage (Bower, 19861. Among the options under consideration are the following: · Expanding Medicare and Medicaid to serve a broader population or, specifically through Medicaid, offering otherwise ineligible persons the option of purchasing some form of catastrophic protection; · Authorizing "medical individual retirement accounts"; · Implementing catastrophic provisions in employee health insurance plans; · Providing federal subsidies for nonfederal catastrophic policies; · Providing low-cost, subsidized coverage to uninsured low-income and unemployed persons through state insurance pools; and · Imposing a small federal tax to allow state payment of catastrophic illness policies for persons incurring expenses exceeding 20 percent of family income. Emerging Issues The health insurance covering the majority of Americans, whether private companies or public programs, is seldom specific to a particular disease. A major exception is the end-stage renal disease (ESRD) program of Medicare (Eggers et al., 19841. Consideration of financing AIDS care raises a number of questions. For
CARE OF PERSONS INFECTED WITH HIV 167 example: Are the problems and costs associated with AIDS (or, more broadly, HIV-related conditions) sufficiently compelling for it to be singled out for some special form of financial treatment, as with end-stage renal disease? If so, what types of care should be covered? If not, how can the current arrangements be improved to better cope with the problems that AIDS and other diseases pose? What manifestations of HIV infection other than AIDS might need specific financial consider- ation? Would such coverage arise from local or national sources, from private or public sources? What criteria or principles should govern public policy decisions affecting such coverage? In the application of such principles, what epidemiologic, clinical, and economic data would be relevant? Issues that are emerging in relation to the financing of care for HIV-related conditions include the following: · Many affected individuals, particularly IV drug users, may have no health insurance. · Some individuals seeking health insurance coverage may be aware that their behavior has put them at risk for HIV infection, but may not wish to reveal this if it affects their likelihood of obtaining insurance. · Providers of insurance, when entering into insurance contracts, would like to be able to assess the financial risk the contract entails for them and to be permitted to use reasonable "tools" to ascertain this. · Gaps may exist in the coverage provided by insurance or public programs. For example, many programs have exclusions, will not pay for care provided while a patient is receiving experimental therapy (as much of AIDS therapy presently is, since it is a new disease), or may not cover community-based services such as home care. · Use of the CDC surveillance definition of AIDS as a criterion for eligibility for certain types of financing (e.g. Medicaid) is limiting because it excludes other severe HIV-associated conditions that may be equally disabling. · The two-year waiting period to qualify for Medicare disability excludes most individuals with AIDS because most of them do not survive that long. · Coverage of the costs of medical care for ARC patients and seropositive individuals has received little study and remains unclear. · The unreimbursed costs of care for AIDS patients at some hospitals seem to be higher than average for patients generally, imposing a disproportionate burden on certain geographic areas and institutions. · AIDS is a particularly costly illness, and those whom it affects may not have accumulated resources to offset these expenses. · Pediatric AIDS is becoming a significant problem; society has
168 CONFRONTING AIDS traditionally accepted a special responsibility for the health of children, especially if their parents are unable to provide for their needs. · AIDS is a new problem that has rapidly added a considerable and unequally distributed burden to the health care financing system, a burden that will grow greatly in the next few years. · Even those AIDS patients with extensive health care coverage may be impoverished by the loss of employment and the costs of routine daily care. Although the majority of these patients are ambulatory during all but the most acute phases of the disease, few of them can sustain gainful employment, even during periods when their disease is relatively quies- cent. Though no quantitative data are available on the extent of workdays lost, Scitovsky et al. (1986) have suggested that AIDS sufferers can work no more than 40 percent per year. Hardy et al. (1986) have suggested that this figure is only 14 percent, based on a review of other studies. Therefore, a proper analysis of insurance for AIDS victims also needs to consider disability, wage replacement, and possibly death benefits as well as medical care coverage. AIDS and other HIV-related conditions present multiple financial burdens to society, the cost of medical care constituting only one component of these, albeit a large one. Many of the issues that arise in connection with financing AIDS care are not unique to it, but reflect problems inherent in the present system for financing care. These problems are posed at a time when federal and state governments and others are grappling with their respective responsibilities and the best mechanisms for meeting the health care costs of the poor, the uninsured, and the underinsured. This is also a time when there is considerable pressure to contain health care costs (and the costs such as employee fringe benefits that depend on them). However, in the opinion of the committee, there is one aspect of the financing of care for AIDS that deserves special consideration. This relates to the way in which the concerns of employers or the providers of insurance might affect the motivation of individuals in groups at risk of infection to step forward and participate in efforts to stem the spread of infection. So long as the claims of insured AIDS patients constitute a relatively small fraction of the total claims of all insured people in employment- based plans, there will not be major increases in the costs of such plans. However, increases in the proportion of AIDS cases among insurance claims will cause increases in costs. Insurers will charge higher premiums to employers, and employers will have an incentive to exclude infected or high-risk persons from employment in an attempt to contain their contri- butions to the costs of benefits packages. When insurance companies are writing individual or small-group poli
CARE OF PERSONS INFECTED WITH HIV 169 cies, they have an actuarial incentive to identify and possibly exclude persons who are at risk of HIV infection or who are already seropositive, because these people pose the threat of potentially very large expendi- tures. A few states or jurisdictions have enacted special antidiscrimina- tion laws that bar insurance companies from denying insurance to persons who are at high risk or seropositive for HIV infection (Intergovernmental Health Policy Project, 19861. Some of these laws also bar required testing for HIV infection and questions asking whether an insurance applicant has been tested. At an earlier time, when the data on the disease suggested that very few seropositive persons would experience the severe form of the disease, these provisions seemed to many legislative bodies to be appropriate. In more recent months, data have indicated a consider- ably higher conversion to serious disease. Under these conditions the use of screening devices (such as the HIV antibody test) for the underwriting process may be more reasonable. Other tests are used routinely as tools in assessing an individual's risk of disease. Incentives to identify and exclude high-risk persons are not eliminated by laws that prevent discrimination in employment or insurance cover- age. Even if screening tests specific for HIV infection were barred, and even if discrimination on the basis of sexual orientation were illegal, employers and insurers would still have strong incentives to screen persons by any imperfect means at their disposal. Anecdotal evidence suggests that surrogate blood tests, histories of sexually transmitted disease, and other substitute measures have been considered or may already be in use. These surrogate measures invariably have lower predictive value than antibody testing and in some cases very little, if any, predictive value at all. If any test is used, it should be the most predictive. However, the committee recommends that final decisions on the permis- sibility of using screening devices in underwriting be postponed pending the outcome of deliberations regarding the establishment of a mechanism to ensure coverage of health care costs of HIV-infected individuals, as discussed below. The general threat of discrimination in employment or insurance to provide for the costs of medical care may deter individuals in high-risk groups from being tested to ascertain their antibody status. Since knowl- edge of antibody status may prompt some individuals to adopt healthier behavior, social disincentives to testing should be minimized. As noted earlier in this chapter, the committee believes that society has an obligation to ensure that all sick individuals receive adequate medical care. An implication of this belief is that all individuals should have access to some form of "insurance" (public or private) that will finance their care, if needed. Those who can afford it should pay premiums so that they are insured, but those who cannot have a right to expect public provision.
170 CONFRONTING AIDS However, coverage for the cost of care for AIDS and other HIV-related conditions may be subject to misperceptions. If they become ill, IV drug users and homosexual men would in effect be entitled to benefits, and the facile interpretation that other insured persons or society at large would be paying for a "chosen" life-style needs to be directly confronted. "Insurance" coverage for AIDS means covering the costs of a disease and not support of a life-style, just as coverage for the treatment of lung cancer does not support the life-style of smokers. Increased awareness that AIDS is spreading in the sexually active heterosexual population will reduce this problem of misperception somewhat. However, the real question is whether differences of opinion over the morality or advisabil- ity of certain behavior should affect a sick person's access to health care. The committee believes that perceptions as to a person's culpability for an illness are irrelevant to the question of access to medical care and the opportunity to make provision for covering its costs. (This opinion is consistent with the position of the President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research (1983b) as discussed in the report Securing Access to Health Care.) . If some "insurance" mechanism were available as a last resort whereby any individuals (even if at risk of infection, seropositive, or already ill) could make provision or otherwise be assured that their future health care costs would be covered, then much of the tension between the interests of insurers and individuals at risk of infection would be elimi- nated. The range of problems associated with AIDS and HIV-related care financing illustrate shortcomings in the general health care financing system. Thus, it is desirable that provisions for ensuring coverage of AIDS care costs be encompassed in a scheme that resolves general problems in financing rather than be AIDS-specific. There are a number of mechanisms available to deal with the problems faced by potential patients and insurers whereby last-resort coverage might be provided. These include federal catastrophic health insurance or state pools for medically high-risk individuals. The committee did not have the time or resources to deliberate on the relative benefits of these or other approaches (or on the question of whether a categorical scheme, analogous to Medicare ESRD coverage, just for HIV-related conditions was justified in case the establishment of other general mechanisms proved to be too slow or not entirely satisfactory). Planning for financing of care for AIDS and other HIV-related conditions must begin immedi- ately, because creative new approaches may be needed and putting such schemes into place takes considerable time, as illustrated by the length of
CARE OF PERSONS INFECTED WITH HIV 171 time taken to resolve questions with respect to financing of care for end-stage renal disease a decade (Rettig, 1980~. Policy Issues A variety of eligibility questions would need to be answered in the process of developing any scheme of the type discussed above. These include questions involving the criteria for allowing individuals to partic- ipate in the scheme, the HIV-related (or other) conditions that would be covered, and the grounds for revision of eligibility criteria. Some experi- ence with the categorical ESRD coverage indicates that the rapid expan- sion of total ESRD costs during the 1970s and 1980s resulted not from changes in the incidence of renal disease but from changes in the standards of eligibility for dialysis (Eggers et al., 19841. An issue in the design of health insurance schemes- both private and public is the question of what methods of providing benefits impart the most appropriate incentives to both providers and patients. If treatment of AIDS in settings outside of acute care hospitals generally proves to be more cost-effective than longer hospitalizations, then coverage of treat- ment in these settings is desirable and lack of coverage provides an inappropriate incentive to use hospitals, which would raise total costs. If reimbursements for care for AIDS and other HIV-related conditions fall substantially below the actual cost of care, then hospitals and other facilities may have incentives to turn away AIDS patients. Another aspect of this issue is the way the scheme affects incentives to seek care. If medical treatment or knowledge of cofactors were to improve substan- tially, early incentives to seek care could be critical. Incentives to seek care are relevant not only to treatment of HIV infection but also to its prevention. In this regard, it is critical to examine ways in which the current system or any new system of health care financing might be modified to help persons at risk avoid infection. Of special concern is funding for the treatment of IV drug use, which is likely to be effective in prevention of HIV transmission. Incentives to be tested for HIV antibodies might help slow the spread of infection when coupled with counseling. Also, outpatient clinics for the care of sexually trans- mitted diseases, for example, may be effective sites for education about HIV transmission. If so, coverage for such services in any new scheme would be critical. Another issue in the financing of care for AIDS and other HIV-related conditions is the question of balance between public and private cover- age. A sizable proportion of AIDS patients appears to have conventional private health insurance through employment-based groups, and this
172 CONFRONTING AIDS seems likely to continue, as is appropriate. (It is not the purpose of new mechanisms to transfer the costs of AIDS patients from existing private insurance schemes.) With 40 percent or more of AIDS patients currently covered under Medicaid, it appears likely that future financing of AIDS care will necessarily involve substantial public programs and funds. The scheme could be designed to shift the current balance in either direction or to maintain the status quo; the relative merits of these shifts need to be considered. The issue of equity also needs consideration. Although HIV infection and AIDS are spreading throughout the United States, the major burden of cases is likely to be in urban centers and in particular states for the near future. To what extent the financial burden should be spread locally, within states, regionally, or nationally needs to be addressed. Conclusions and Recommendations In its review the committee found a number of causes for concern with the present financing of care for patients with AIDS and HIV-related conditions. Some of these reflect generic problems with health care financing. There also exists the potential for high-risk individuals to be apprehensive about discrimination in employment or in access to health care insurance, which could adversely affect efforts to stem the spread of HIV infection. The committee believes that society has an ethical obligation to ensure that all individuals receive adequate medical care. This implies the opportunity to make provision for or otherwise be assured that their future health care costs will be covered. Those who can afford it should pay premiums so that they are insured, but those who cannot have a right to expect public provision. · The committee recommends that the commission on financing of health care recommended in the PHS Plan for the Prevention and Control of AIDS and the AIDS Virus (Appendix G) take as its first order of business the evaluation of ways to ensure that all persons at risk of infection, seropositive, or already ill could make provision for or other- wise be assured that their potential health care costs will be covered. It suggests that the options considered include state pools for medically high-risk individuals and federal catastrophic health insurance. (These would supplement existing private and public insurance schemes.) Private and public insurance coverage should be modified to provide effective incentives for the appropriate treatment of HIV-related condi- tions such as AIDS. To this end, more needs to be known about the most cost-effective means of treating the various manifestations of the disease
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