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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

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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

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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.

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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.

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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

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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

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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.

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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

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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

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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

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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

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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

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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

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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

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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.

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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

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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

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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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CARE OF PERSONS INFECTED WITH HIV 173 and about shortcomings in the present systems in relation to the optimal approaches to care. Carefully designed studies should be made of medical expenditures for AIDS patients under different models of care. Similar studies of persons with other manifestations of HIV infection, such as ARC, are also required. Managed approaches to care should be included in these evaluations. Current financing mechanisms should be immediately and periodi cally examined to determine the extent to which they meet the costs of care for AIDS and ARC patients and their edect on incentives to provide care. Areas for attention should include the adequacy of hospital reim- bursements by Medicaid for AIDS patient care; the appropriateness of eligibility periods; reimbursement for out-of-hospital care, hospice care, and home care; the use of diagnosis-related groups in reimbursement decisions; and coverage for home care not provided by nursing profes- sionals. REFERENCES Abrams, D. I., J. W. Dilley, L. M. Maxey, and P. A. Volberding. 1986. Routine care and psychosocial support of the patient with AIDS. Med. Clin. North Am. 70:707-720. American College of Physicians and Infectious Diseases Society of America. 1986. Acquired immunodeficiency syndrome. Ann. Intern. Med. 104:575-581. Arno, P., and P. Lee. 1986. The economic aspects of AIDS. Unpublished paper. University of California, San Francisco. Belmont, M. F. 1985. St. Luke's-Roosevelt Hospital Center Study: Resource Utilization by AIDS Patients in the Acute Care Hospital. New York: Health Services Improvement Fund. Boufford, J. 1985. Testimony before the Subcommittee on Health and the Environment, U.S. House of Representatives, November 1, 1985. Bowen, O. R. 1986. Memorandum from the Secretary of Health and Human Services to Alfred H. Kingon, Cabinet Secretary, March 25, 1986. California Department of Health Services. 1986. Acquired Immune Deficiency Syndrome in California: A Prescription for Meeting the Needs of 1990. Sacramento: California Department of Health Services. Cassens, B. J. 1985. Social consequences of the acquired immunodeficiency syndrome. Ann. Intern. Med. 103:768-770. Christ, G. H., L. S. Wiener, and R. T. Moynihan. 1986. Psychosocial issues in AIDS. Psychiatr. Ann. 4:173-179. Congressional Research Service. 1986. Health Insurance: Proposals in the 99th Congress, 211186. Washington, D.C.: The Library of Congress. Curran, J. W., W. M. Morgan, A. M. Hardy, H. W. Jaffe, W. W. Darrow, and W. R. Dowdle. 1985. The epidemiology of AIDS: Current status and future prospects. Science 229: 1352-1357. Douglas, C. J., C. M. Kalman, and T. P. Kalman. 1985. Homophobia among physicians and nurses: An empirical study. Hosp. Comm. Psychiatry 36:1309-1311. Eggers, P., R. Connerton, and M. McCullan. 1984. The Medicare experience with end-stage

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174 CONFRONTING AIDS renal disease: Trends in incidence, prevalence, and survival. Health Care Financing Rev. 5:69-88. Greater New York Hospital Association. 1986. Executive Summary of the Study of Routine Costs of Treating Hospitalized AIDS Patients. New York: Greater New York Hospital Association. Green, J., M. Singer, and N. Wintfeld. 1986. The AIDS epidemic: A projection of its impact on hospitals, 1986-1991. Background paper. Washington, D.C.: Committee on a National Strategy for AIDS. Hardy, A., K. Rauch, D. F. Echenberg, W. M. Morgan, and J. W. Curran. 1986. The economic impact of the first 10,000 cases of AIDS in the United States. JAMA 225:209- 211. Holland, J. C., and S. Tross. 1985. The psychosocial and neuropsychiatric sequelae of the acquired immunodeficiency syndrome. Ann. Intern. Med. 103:760-764. Intergovernmental Health Policy Project. 1986. A Summary of AIDS Laws from the 1986 Legislative Sessions. Washington, D.C.: The George Washington University. Jonsen, A., M. Cooke, and B. Koenig. 1986. Ethics and AIDS. Issues Sci. Technol. 2:56-65. Kizer, K. W., J. Rodriguez, G. F. McHolland, and W. Weller. 1986. A Qualitative Analysis of AIDS in California. Sacramento, Calif.: California Department of Health Services. LaCamera, D. J., H. Masur, and D. K. Henderson. 1985. The acquired immunodeficiency syndrome. Nurs. Clin. North Am. 20:241-256. L~fson, A., and P. Lierberman. 1986. Insurance coverage and AIDS. Background paper. Washington, D.C.: Committee on a National Strategy for AIDS. Lo, B., T. A. Raffin, N. H. Cohen, R. M. Wachter, J. M. Luce, and P. C. Hopewell. 1986. Ethical dilemmas about intensive care in patients with AIDS. Background paper. Washington, D.C.: Committee on a National Strategy for AIDS. Martin, J. P. 1986. The AIDS home care and hospice program. A multidisciplinary approach to caring for persons with AIDS. Am. J. Hosp. Care 3:35-37. McHolland, G. F., and W. Weller. 1985. Summary Report on California AIDS Victims: Quantitative Analysis. Sacramento, Calif.: California Department of Health Services. Meskin, S., and J. Klemm. 1986. Preliminary estimate of the impact of AIDS on the Medicaid program. Unpublished draft paper. Baltimore, Md.: Health Care Financing Administration. Morin, S. F., K. A. Charles, and A. K. Malyon. 1984. Psychological impact of AIDS on gay men. Am. Psychol. 39:1288-1293. Navia, B. A., B. D. Jordan, and R. W. Price. 1986. The AIDS dementia complex: I. Clinical features. Ann. Neurol. 19:517-524. Nichols, S. E. 1985. Psychosocial reactions of persons with the acquired immunodeficiency syndrome. Ann. Intern. Med. 103:765-767. Perry, S. W., and P. Jacobsen. 1986. Neuropsychiatric manifestations of AIDS spectrum disorders. Hosp. Comm. Psychiatry 37:135-142. Perry, S. W., and J. Markowitz. In press. Psychiatric intervention for AIDS spectrum disorders. Hosp. Comm. Psychiatry. Pindyck, J., J. Avorn, P. Cleary, et al. 1986. Notification of anti-HTLV-III/LAV positive blood donors: Psychosocial, counseling and care issues. World Health Organization Report on AIDS. Geneva: World Health Organization. Polan, H. J., D. Hellerstein, and J. Amchin. 1985. Impact of AIDS-related cases on an inpatient therapeutic milieu. Hosp. Comm. Psychiatry 36:173-176. President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research. 1983a. Deciding to Forgo Life Sustaining Technology. Washington, D.C.: U.S. Government Printing Office. President's Commission for the Study of Ethical Problems in Medicine and Biomedical and

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CARE OF PERSONS INFECTED WITH HIV 175 Behavioral Research. 1983b. Securing Access to Health Care. Washington, D.C.: U.S. Government Printing Office. Public Health Service. 1985. PHS recommendations for preventing transmission of infec- tions with HTLV-III/LAV in the workplace. Morbid. Mortal. Weekly Rep. 34:681-695. Raffin, T. A., B. Lo, R. M. Wachter, J. M. Luce, and N. H. Cohen. 1986. Intensive care for patients with the acquired immunodeficiency syndrome. Background paper. Washington, D.C.: Committee on a National Strategy for AIDS. Rettig, R. A. 1980. The politics of health cost containment: End stage renal disease. Bull. N.Y. Acad. Med. 56:115-138. Scitovsky, A. A., D. P. Rice, J. Showstack, and P. R. Lee. 1986. Estimating the Direct and Indirect Economic Costs of the Acquired Immune Deficiency Syndrome, 1985, 1986, and 1990. Task order 282-85-0061, #2. Atlanta, Gal: Centers for Disease Control. Smith, E. 1986. Testimony before the Subcommittee on Health and the Environment, U.S. House of Representatives, March 5, 1986. Snider, W. D., D. M. Simpson, G. Nielsen, J. W. M. Gold, C. Metroka, and J. B. Posner. 1983. Neurological complications of acquired immunodeficiency syndrome: Analysis of 50 patients. Ann. Neurol. 14:403-418. Steinbrook, R., B. Lo, J. Moulton, H. Hollander, and P. A. Volberding. 1986. Preference of homosexual men with the acquired immunodeficiency syndrome for life-sustaining treatment. N. Engl. J. Med. 314:457-460. Stoller, B. 1986. Impact of AIDS on the well child. Paper presented at the public meeting of the Committee on a National Strategy for AIDS. New York, May 15, 1986. Tross, S. 1985. Psychological and neuropsychological functions in AIDS patients. Paper presented at the International Conference on AIDS, Atlanta, Gal, April 14-17, 1985. U.S. Congress. 1986. Consolidated Omnibus Budget Reconciliation Act, P.L. 99-272. Washington, D.C.: U.S. Government Printing Office. Volberding, P. A. 1985. The clinical spectrum of the acquired immunodeficiency syndrome: Implications for comprehensive patient care. Ann. Intern. Med. 103:729-733. Volberding, P. A. 1986. Variation in AIDS related illnesses: Impact on clinical research. P. 5 in Abstracts of the Second International Conference on AIDS, Paris, June 23-25, 1986.

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