APPENDIXES



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Access to Health Care in America APPENDIXES

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Access to Health Care in America This page in the original is blank.

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Access to Health Care in America A Developing Indicators of Access to Care: The Case for HIV Disease Vincent Mor 1 Since the first case was diagnosed in 1981, acquired immune deficiency syndrome, or AIDS, has become a leading cause of death among men age 25 to 44; more than 100,000 persons died of AIDS in 1981–1990 (CDC, 1990). The most recent Centers for Disease Control (CDC) projections are that as many as 153,000 persons were living with AIDS at the end of 1991 and that approximately 1 million persons are infected with the human immunodeficiency virus (HIV; CDC, 1991). Cumulatively, 275,000 cases of AIDS will have been reported by the end of 1991. Initially, the concentration of AIDS cases was in a few urban areas on the East and West coasts, but the incidence rate has been rising in communities outside the original epicenters, more rapidly in some risk groups than in the first-line cities. The epidemic was first associated with homesexual contact, but HIV transmission through injection drug practice has been increasing in urban centers all along the East coast and even in the rural South. Linked to, but independent of, the rise in drug-related transmission is the incidence of AIDS among women and their children, which is expected to increase by about one-third per year. The incidence rate among bisexual and homosexual males in New York City, San Francisco, and Los Angeles who do not use drugs has actually been flat over the past several years. (Incidence is rising in this group in other areas of the country, however.) Given these 1   Vincent Mor is Director and Associate Professor of Medical Science at the Center for Gerontology and Health Care Research, Brown University, Providence, Rhode Island.

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Access to Health Care in America changing rates, the concentration of this epidemic will continue to increase in the nation's poor, drug-using, and minority populations. The availability of effective curative and prophylactic treatments such as zidovudine (AZT) and pentamadine has provided a clinical rationale for early diagnosis (Fischl et al., 1987; Volberding et al., 1990). Life expectancy for those diagnosed with AIDS has been increasing over the first decade of the epidemic, even controlling for the changing pattern of diagnosed diseases that constitute the case definition of AIDS (CDC, 1990; Harris, 1990; Lemp et al., 1990; Piette et al., in press). Earlier diagnosis, longer survival, and extended years of medical treatment all imply that AIDS has become a chronic disease requiring a complex mix of health and social services that must be modulated as a patient's disease status and treatment affect both physiological and social functioning (Benjamin, 1988; Mechanic and Aiken, 1989). Since the early days of the epidemic, the technology for treating and managing the multiplicity of opportunistic infections in AIDS has changed rapidly (Cohen et al., 1990). Variation in the length of hospital stays has also been repeatedly noted by region and provider (Andrulis et al., 1989; Kaplowitz et al., 1988; Seage et al., 1990). Recent studies have shown that experience with AIDS management has a positive impact on survival and that more experienced facilities appear to make more effective use of additional resources, compared with those with less experience (Bennett et al., 1990). Accompanying the change in clinical practice has been a reduction in the duration of hospital stays (Seage et al., 1990) and an increase in the use of outpatient and home treatment with ''high-tech" nursing care (e.g., home intravenous units, infusion and parenteral nutrition). Because of both the rapid impoverishment of formerly employed persons who lose their private health insurance and the increasing prevalence of AIDS among the previously poor and uninsured, urban municipal and not-for-profit hospitals are disproportionately paying the price of the AIDS epidemic (Andrulis, 1989; Baily et al., 1990; Green and Arno, 1990). Since many of these institutions are facing other pressures, such as homelessness and the medical consequences of drug abuse, the unique pressures of AIDS only serve to complicate their ability to address an already complex mix of social problems. Public reaction to the AIDS epidemic has been volatile and generally negative (Blendon and Donelan, 1988). Each new incident of transmission that breaks prior stereotypes is greeted with fear and hysteria in certain sectors. (The recent case of HIV transmission from a dentist to his patients provides a graphic example of this phenomenon.) At the same time, a substantial minority blame the victims for the behavioral transgressions that "caused" their condition (Blendon and Donelan, 1988). This prejudice isolates infected individuals and leads to job discrimination, denial of insurance benefits, and reduced access to personal health care.

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Access to Health Care in America With this background, HIV disease can serve as a sensitive indicator of the degree of access to personal health care services in the United States. However, relatively little is known about the reduced access experienced by this population, how to measure it, or what it means. Further conceptualization of these issues is required before specific indicators of reduced access can be suggested with any confidence. Following the model proposed by the IOM Committee for Monitoring Access to Personal Health Services in Chapter 2, this paper reviews the issues and existing knowledge about the presence of barriers to access to health services that confront persons with HIV disease. The consequences for persons with HIV disease are also examined by measuring variations in utilization of health services. This review relies not only on the relatively sparse published literature but also on quantitative data and qualitative insights derived from an ongoing study examining the organization and delivery of health and social services to persons with AIDS in various cities around the country. This study is described briefly below, after which the relevant literature is reviewed and new data on these issues are presented. The last section of this paper proposes a series of indicators of barriers to access and the types of data systems necessary to monitor them. ROBERT WOOD JOHNSON FOUNDATION AIDS HEALTH SERVICES PROGRAM AND EVALUATION Between 1986 and 1990 the Robert Wood Johnson Foundation (RWJF) funded nine projects (AIDS Health Services Programs [AHSP]) in 11 cities to develop and coordinate specialized health and supportive community services for persons with disabling HIV disease (Mor et al., 1989). The emphasis in these projects was on developing networks of community-based care providers to offer new services and to coordinate the delivery of existing services. The central organizational features of the programs were a formal consortium of participating agencies and individualized case management. Program evaluation was conducted by Brown University's Center for Gerontology and Health Care Research, under the direction of this author. The evaluation integrates quantitative data obtained from computerized program "intake" records and two longitudinal cohorts of program clients. Clients were surveyed about their experience in obtaining health services and qualitative information was obtained from four rounds of site visits and a detailed review of program progress reports, correspondence, and budgets. Several papers based on this evaluation have already appeared or are in press (Capilouto et al., 1991; Fleishman, 1990; Fleishman et al., 1989, 1990, 1991; Mor et al., 1989, 1992; Piette et al., 1990, in press; Stein et al., 1991). The major evaluation issues pertaining to the success of consortia building and case management as vehicles for service integration are still

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Access to Health Care in America being examined. The project information presented in succeeding sections represents both published and unpublished data. The more qualitative information is based largely on case studies; the quantitative information clearly is limited by its focus on program clients rather than on the experience of a broad cross section of persons with HIV disease in each city. Nonetheless, because this data source contains specific, detailed information relevant to the access barriers that confront those with HIV disease, it is useful as an illustrative device. ISSUES IN ASSESSING ACCESS TO PERSONAL HEALTH CARE Equitable access to health care services has been a major focus of health services research in the United States for four decades (Ginzberg, 1990). Research in the past two decades has emphasized factors associated with the rising costs of health care; now, as a result of growth in the number of uninsured over the past decade, access to care has once again emerged as a central topic in health services research. This section reviews the various barriers to use of services confronting persons with HIV disease. In keeping with the model proposed by the IOM committee, barriers have been classified as financial, structural, personal, and attitudinal. Each is defined in relation to the special issues facing persons with HIV disease. Financial Barriers Financial barriers to access to health care services include insurance coverage, provider reimbursement rates, and lack of investment in resources designated for the treatment of HIV disease. Other financial barriers can also be noted, such as out-of-pocket expenses for patients, the high cost of treatment, and the substantial indirect costs of the disease to the patient and society. These barriers are either covered under one of the topics mentioned above or are beyond the scope of this paper. Insurance Coverage The absence of insurance coverage is a barrier to health care services regardless of a person's medical problems. In the case of HIV disease, however, the poverty and/or limited work history and savings of the population at risk, as well as the increasingly prolonged nature of the disease, mean that those infected are likely to endure limited access over a long period of time. Because the absence of private compared with public insurance may have a different, and potentially sequential, impact on the person with HIV disease, these two issues are treated separately.

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Access to Health Care in America Private insurance is almost always tied to employment, because the purchase of individual health insurance coverage is quite expensive and replete with coverage restrictions (Eby, 1989). Loss of employment traditionally has signaled loss of insurance. With passage of the Comprehensive Omnibus Budget Reconciliation Act of 1988, however, individuals have the right to continue purchasing health insurance from their previous employer, paying all the premiums themselves, for up to 18 months. Anecdotal evidence from many sources suggests that the loss of employment income, ongoing living expenses, and increased out-of-pocket medical expenses for copayments make paying these insurance premiums impractical, even at the group rate. The recent Ryan White bill (P.L. 101–381) allows states to pay these premiums. No data are available to estimate the proportion of formerly employed persons with HIV disease who are paying their own health insurance premiums. There is also a dearth of data by which to quantify the rate at which loss of private insurance occurs following either onset of symptoms or formal AIDS diagnosis. Yelin and his colleagues (1991) report on the time between initial HIV symptom onset and work cessation in a cohort of 170 patients treated at San Francisco General Hospital. Three years after initial symptoms appeared, less than half of these patients were working; another 12 percent had reduced work loads. Martin and colleagues surveyed 432 HIV-positive persons in Texas in 1988 (40 percent of distributed questionnaires were returned). The proportion of respondents with private insurance was only 41 percent (Martin et al., 1989). Kass (1989), comparing participants in the Multicenter AIDS Cohort Studies (MACS) with leukemia patients, reported that people with AIDS were more likely to be uninsured and more likely to have been turned down for insurance. Based on intake records completed for all clients of the RWJF AHSPs, only 21.3 percent of some 14,000 clients were employed full-time at their entry into the program, and only half of these had private insurance. This result is consistent with the finding that many of the uninsured in the United States are employed. Half of those who were unemployed when they entered the program had no health insurance at all, either private or public. Although it is likely that only a minority of all individuals with significant symptomatic HIV disease have private medical insurance, the impact of AIDS on specific private insurers is not insignificant. MetLife reviewed health claims for 1986–1989. In 1989, 6,450 people received group medical claim payments for AIDS-related diseases for a total of $111.2 million (Pickett et al., 1990). This figure constitutes almost a 300 percent increase over the AIDS-related claims incurred by the company in 1986. Little evidence exists about how the insurance coverage of persons with HIV changes with disease progression. Kaufman and his colleagues

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Access to Health Care in America (1990) linked hospital discharge records in the state of New York between 1984 and 1986 and found that 17 percent of the patients whose status on first admission was as a private payer had been changed to government reimbursement by their last indicated admission. Unfortunately, the authors do not note the proportion of patients who had no insurance coverage at all. The Texas sample surveyed by Martin and colleagues reported that 60 percent were privately insured at initial HIV diagnosis and 41 percent were insured at the time of the survey (Martin et al., 1989). Interviews with a nonrandomized sample of 1,386 program clients in 9 of the 11 cities funded by the RWJF revealed that 44 percent reported having had private insurance at the time that they learned they had HIV disease. Of those, 37 percent had lost their insurance within three to six months. Access to personal health care services appears to be strongly linked to the availability of private insurance coverage. Zucconi and her colleagues surveyed HIV-positive men and found that the number of reported physician visits was strongly associated with being insured (Zucconi et al., 1989). those RWJF survey sample clients with private insurance reported significantly more physician and clinic visits than those without insurance and were significantly less likely to use an emergency room (Mor et al., 1992). However, in neither that study nor one by Seage and colleagues (1990) was there a relationship between having private insurance and the probability of being hospitalized. Although loss of insurance may be the longitudinal experience of individuals, changes in the insurance mix of the HIV population will occur as the composition of the population shifts and as early identification and treatment of HIV disease become more commonplace. The growth of public insurance coverage for medical treatment of HIV disease undoubtedly will increase with the changing population (Green and Arno, 1990); in addition, the liability of private insurers may grow to cover the early treatment expenses of those with HIV disease who are still employed. Given the promise of early intervention efforts among those with asymptomatic HIV disease, this is an issue of importance for the near future (Arno et al., 1990). Considerable concern has been voiced about the private insurance industry's willingness to continue to provide coverage to persons with high-cost conditions such as HIV (Lipson, 1988; Parmet, 1987); however, the empirical documentation of instances of coverage rejection, withdrawals, and limitations is difficult. Kass (1989) reported that 11 percent of AIDS cases had been turned down for health insurance. As one part of the RWJF program evaluation, 355 clients in three cities were asked about their experience with private insurance. Of those who had health insurance at the time of HIV diagnosis, 40 percent subsequently lost it. For most (23 out of 54 persons), this occurred because they were no longer employed; the rest

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Access to Health Care in America lost their coverage because their policy was terminated or they were no longer able to pay the premiums. Denial of coverage on the basis of retrospective interpretations of pre-HIV diagnosis claims and the widespread adoption of HIV testing as a precondition for health and life insurance applications are strategies being used by the insurance industry to limit liability (IOM, 1986). Indeed, a 1987 survey of state laws revealed that only eight states forbid HIV testing by insurers (Faden and Kass, 1988). Moreover, the growing cost of health insurance premiums for employers may make companies increasingly willing to adopt "carve-out" and prior-condition exemption practices to limit the perceived catastrophic effect of high-cost AIDS patients in their group. Public insurance is playing an ever-increasing role as a payer for health and social services for persons with AIDS (Green and Arno, 1990). Between 1983 and 1987 in New York City, Los Angeles, and San Francisco, the percentage of hospitalizations of AIDS patients financed by Medicaid increased between 50 percent and 100 percent, whereas the percentage financed by private insurance dropped between 25 percent and 50 percent. When compared with non-AIDS cases, costs for AIDS admissions were 50 percent to 275 percent more likely to have been paid by Medicaid than by private insurance. According to the U.S. AIDS Hospital Survey (Andrulis et al., 1989), there is considerable regional variation in the payer source mix for hospitalizations. In 1987, among public hospitals in the East, 71 percent of admissions were paid by Medicaid; it paid for only 18 percent of admissions to public hospitals in the South. Private hospitals are also less likely to serve Medicaid patients in all regions but the South. In contrast, nearly half of all outpatient visits by AIDS patients to private hospitals were covered by Medicaid in virtually all regions. Public hospitals, particularly in the South and West, were much more likely than private hospitals to incur "bad debt" or to use local financing to offer free outpatient clinic care to AIDS patients. Green and Arno (1990) found that in Los Angeles, almost all (98.9 percent) privately insured AIDS admissions occurred in private hospitals, whereas only 42 percent of Medicaid admissions went to private hospitals. Similar patterns were observed in the other cities studied. The authors remark that "the differences are so large … as to suggest nearly distinct systems of care depending upon type of insurance." Site visit experience in the 11 RWJF AHSP demonstration communities reinforced this notion of a bifurcated system. Regional variation in reliance on Medicaid is due to the enormous variation among the states in eligibility policies. Unless a state has a categorical eligibility program (e.g., Aid to Families with Dependent Children, or AFDC) or a program for the medically needy, individuals must meet state

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Access to Health Care in America income and asset tests before they are eligible to receive Medicaid. And even the presence of a medically needy program does not guarantee continuous coverage under Medicaid in most states. The income test in some is below 50 percent of the poverty line, meaning that individuals who have become presumptively eligible for Social Security Disability Income (SSDI) may receive just enough money to make them ineligible for Medicaid. States like Texas and Louisiana have very low-income limits for Medicaid. The services covered under Medicaid also vary considerably by state. Some, like Louisiana, arbitrarily limit the number of inpatient care days as well as the number of physician and home health visits covered by Medicaid. Almost all Medicaid programs have updated their pharmacy formulary to include treatment drugs such as AZT and pentamadine (Buchanan, 1988), although in some states there is a perception of limited public supply. Some states have chosen to expand the range of services that can be provided to Medicaid recipients (e.g., home care, case management, homemaker, transportation, and home medical visits) by requesting "waivers" from the Health Care Financing Administration (HCFA). HCFA approval of a waiver depends on a state's demonstration of how the waiver will produce savings. Expanding home services as a substitute for more expensive inpatient care is almost always the rationale. This means that publicly insured persons with AIDS in waivered states will have access to a broader, more diverse array of health care services than will be the case for all but the most fortunate patients with private insurance. New Jersey has had waivers in place since 1987; other states, however, have such limited Medicaid coverage that it is virtually impossible to demonstrate how the waivers would be cost neutral, much less produce savings. Even when a case can be made for cost savings, when properly evaluated these programs almost always result in higher costs. The time lapse between loss of private coverage and eligibility for public insurance may be prolonged. The devastating personal effects of this lapse may result in impoverishment, since home ownership (the one asset spared by Medicaid spend-down rules) is not the norm in this population. (Only 10.8 percent of respondents to the RWJF survey owned their own homes.) In examining respondent satisfaction with the health care they received, the RWJF survey found that those who previously had private insurance but were no longer covered reported significantly lower satisfaction with their access to health care. During the interim, from the time people lose their private insurance to the time they become eligible for public coverage, there is some evidence that outpatient and physician visits are less frequent (Mor et al., 1989; Zucconi et al., 1989). If these individuals require hospitalization, the hospitals that accept them (presumably public facilities) incur added bad debt.

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Access to Health Care in America Provider Reimbursement Rates Provider reimbursement levels also may affect access to the personal health care system. It is well documented that patients with Medicaid as their primary source of payment for health care have a more difficult time finding a private physician to treat them (Holahan, 1984; Perloff et al., 1987). A major reason is that Medicaid reimbursement rates tend to be substantially lower than customary charges and reimbursements from other payers. If a provider receives lower-than-average levels of reimbursement for treating Medicaid patients and AIDS patients cost more to treat than the average patient, the provider may be even more reluctant to treat AIDS patients. The implications of inadequate reimbursement for the AIDS patient may differ for hospitals, clinics, physicians, home health providers, and nursing homes. Consequently, they are discussed separately below. The cost-to-charge ratios of hospitals reflect whether, for various types of services, their accounting cost for producing a service is higher or lower than what they charge for it. This cost in turn might differ from their reimbursement for the service by third-party payers. Andrulis and his colleagues (1989) surveyed U.S. hospitals and asked them to estimate their costs per inpatient day and per outpatient visit for treating AIDS patients. Across all regions, both public and private hospitals reported losing from $4 per patient day among private hospitals in the South to $386 per day among southern public hospitals. Reporting hospitals also noted that they were experiencing losses with non-AIDS medical/surgical patients, but these losses were substantially lower. Similar findings were reported for outpatient visits. Hospitals that note discrepancies between costs incurred and reimbursements received for AIDS hospital admissions may attempt to minimize their exposure to financial risk by limiting the number of AIDS admissions, particularly those insured by Medicaid. Green and Arno (1990), as well as Andrulis and coworkers (1987a), have shown that Medicaid patients are underrepresented among AIDS admissions to private hospitals, compared with public hospitals. The hospital outpatient clinic has become a central point of treatment for persons with HIV disease. Public hospitals have a long tradition of providing care to the poor and uninsured, and these clinics are training sites for medical schools and affiliated academic medical centers. Andrulis and colleagues (1987a) found an average of 161 HIV outpatients (median = 36) with an average of 1,460 visits per year in the 80 public hospitals they surveyed. On average, the 196 private hospitals surveyed served far fewer outpatients. Whether this differential is due to the diversion of high-cost, low-reimbursement patients to the public sector or to the fact that few private hospitals specialize in this care is not known at this time.

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Access to Health Care in America persons in certain age-sex groups for given diagnostic conditions. Indicators of access to the personal health care system are not as easily available, however, particularly for the relatively rare condition of HIV disease. This section proposes indicators of barriers to health care access for persons with HIV disease consistent with the three goals outlined by the IOM committee: (1) avoiding premature mortality from diseases amenable to early case-finding; (2) avoiding premature mortality from life-threatening conditions for which effective medical management exists; and (3) providing services that reduce morbidity or improve functioning. Indicators might be derived from existing, ongoing data systems that are already in place, special-purpose merges of normally unlinked data systems, and surveys of the population that should contain samples of persons with HIV disease. Decreased Mortality Using Case-Finding Before the advent of effective antiviral treatments to increase survival, any discussion of HIV testing was largely influenced by concerns about confidentiality. It may therefore seem strange, given the debate over the past decade about "anonymous" versus "voluntary" testing, to use HIV testing as an indicator of access to care. But antiviral therapy is now advocated early in the course of disease. In view of available life-prolonging therapeutics, those who are at risk and who are not tested are at a disadvantage. Early case-finding is as important for HIV disease as it is for breast and cervical cancer. Just as use of mammography is a "utilization"-based indicator of access to the personal health care system that is relevant for breast cancer, it is now reasonable to use the rate of HIV testing in the population as a utilization indicator of access. Measures of the testing rate per 1,000 persons within age-sex-race profiles, using aggregated data from anonymous test sites, should provide an indication of the level of "access" to early identification for each population subgroup. In states such as Colorado, where HIV infection is a reportable condition, the rate of testing could be calculated after removing from the denominator the number of people in that subpopulation who are already infected. The measurement task is not a simple one, however, because a myriad of conceptual and technical complications are associated with using such data as the basis for examining differential access. First, in many states, testing is available outside of state-operated anonymous test sites in settings that still protect anonymity. In addition, anecdotal evidence points to considerable out-of-state travel, particularly from states that have aggressive partner notification programs, to secure even greater anonymity in testing. Moreover, estimates of the at-risk population, whether gay men or intravenous drug users, are notoriously inaccurate; this means that the denominators

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Access to Health Care in America for these rates would have to be calculated separately for various age, sex, and racial groups. It also implies a recognition that the numerators (the number of people tested in each group) might reflect many persons from outside the geographic population base of interest. Screening programs for treatable conditions are considered effective if there is evidence that they are used by a large unbiased proportion of the population or if there is evidence of a reduction in the rate at which the disease is identified in a later, untreatable stage. As applied to HIV disease, there are several potential indicators of the success of an early identification program. One example relies on the existing CDC-maintained national AIDS "registry" of all cases reported by each state's department of health. In addition to data on risk group and presenting diseases, the registry includes data on mortality. One class of deaths includes those that occur within the same calendar quarter in which the case was reported. Early identification programs should reduce the prevalence of such cases in registries. Another example of an outcome indicator of early identification programs is the proportion of first admissions for HIV-related conditions that occur in late stages. Turner and her colleagues (1989) have developed a staging system for AIDS, based on hospital diagnoses, that predicts in hospital mortality. By using linked hospital discharge abstract record systems such as exist in New York, it is possible to identify an individual's first HIV-related hospitalization. By applying a disease staging system, the rate of presentation with advanced HIV disease at first hospitalization can be determined. Several conceptual and methodological limitations and constraints must be considered in evaluating the validity of these outcome indicators. With respect to the AIDS registry, a host of concerns arise about reporting biases and the completeness of case ascertainment and mortality follow-up. Furthermore, case reporting for AIDS is based on an arbitrary set of clinical symptoms identified early in the epidemic. There has already been one change in the definition of AIDS that complicated use of the registry for epidemiological purposes. The designation of AIDS implies presumptive eligibility for total disability under the SSDI (Social Security Disability Insurance) program, meaning that an AIDS diagnosis represents an entitlement for financial and other benefits. Given the underrepresentation of opportunistic infections concentrated among women in the AIDS case definition criteria, there is now considerable pressure to change the definition again. Obviously, any such change will alter the validity of indicators based on the registry and will limit longitudinal comparisons. Certain states (e.g., New York, California, Massachusetts, Maryland) have statewide, uniform hospital discharge abstract reporting systems that include information on the charges or costs incurred per discharge, in addition

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Access to Health Care in America to information on length of stay, discharge diagnoses, and payer source. New York has assembled the Statewide Planning and Research Cooperative System (SPARCS), which links the discharges of individuals, thus facilitating historical analyses of changes in an individual's payment sources and diagnoses (Kaufman et al., 1990). This diagnostic data set can be used to determine whether a patient's first HIV-related hospitalization occurs during an early or late stage of the disease. This estimate can be aggregated to the county or catchment area level to characterize the effectiveness of early identification programs in given locales. The validity of measures derived from systems like the SPARCS as indicators of late diagnosis can be undermined by rapidly changing patterns of care; for example, increasing emphasis on outpatient treatment, both at home and in clinics, may lead to the avoidance of hospitalization for some patients. Thus, relying only on hospital-based statistical indicators under this scenario will confuse newly diagnosed with end-stage, drug-using patients. Reduced Mortality Using Medical Management Among the indicators of appropriate utilization of services that are assumed to address the overall goal of mortality reduction is the receipt of therapeutics that are known to affect survival. Consensus has been reached on the soundness of the evidence showing the effectiveness of retroviral drugs and antimicrobial agents, both in response to illness and for prophylaxis. Utilization-based indicators of access should be based on the rate of use of these drugs in various subgroups of the population. These rates can be derived from special statewide merged data sets such as the HIV Information System in Maryland, which links health department AIDS reporting information with Medicaid and Blue Cross/Blue Shield claims (including pharmaceuticals) and with hospital discharge abstracts (Hidalgo, 1990). Another approach, which was used in the evaluation of the RWJF multicity project, is to survey individuals about their receipt of these treatments. The Agency for Health Care Policy and Research (AHCPR) has funded the AIDS Cost and Services Utilization Survey (ACSUS), which is currently in the field. The survey asks respondents about their use of AIDS-related therapeutics and will be abstracting comparable data from physician and hospital records. Reliance on specialized data bases and surveys requires knowing well in advance the information that needs to be collected. Changes in the types of drugs being used and in how they are reimbursed may undermine the accuracy and validity of these types of indicators unless a mechanism can be developed for continuous updating of treatment-related information. For example, a new drug may be introduced and rapidly disseminated among

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Access to Health Care in America treating physicians while a survey is in the field; without a mechanism to capture such a change in treatment, the effects of the drug may be missed and the validity of the earlier target treatments (which are replaced by the new one) as access indicators will be undermined. Special merged data sets may be similarly compromised, particularly if a lag occurs between acceptance in the field of the new treatment's effectiveness and the treatment's acceptance by insurers, particularly public insurers, as a reimbursable claim. The outcome of access to medical management, including antiviral treatment, should be to increase survival. In spite of the limitations of the national CDC registry, it is an appropriate vehicle by which to examine this issue. However, an adjustment must be made for the effect of late-stage diagnosis, since prior to diagnosis the disease could not have been managed. Thus, survival differentials among those who live at least three to six months postdiagnosis are a potential indicator of access. Although these comparisons are broadly applicable, there is reason to believe that survival differentials are related not merely to differences in medical management but also to the health status of the host and the efficiency of the mode of transmission of the virus. Intravenous drug users, for instance, may have compromised their health before being exposed to HIV. In addition, transmission by contaminated needles, rather than sexually, may be much more efficient at spreading the virus within an organism. Consequently, the mere comparison of survival rates among risk groups, after adjusting for late-diagnosed cases, could overstate the effects of medical management. Use of a special-purpose merged data system, such as the one in Maryland, makes it possible to statistically control for differences in risk groups and to assess the effects of treatment across all risk groups through stratified analyses (Moore et al., 1991). Reduced Morbidity and Improved Function Providing of services that reduce morbidity and improve functioning is often considered synonymous with out-of-hospital care. Evidence from a number of studies of persons with AIDS suggests a strong preference for care at home and for maintaining control over medical decisionmaking (Teno et al., 1990, 1992). Thus, it is safe to say that this population values time spent at home and away from the hospital. Examples of utilization indicators of access to services that can help reduce morbidity include the rate of hospital admissions through the emergency room, the proportion of people with AIDS who use home health agency services, and the number of additional days spent in the hospital due to administrative discharge delays. Data on home health use must be derived from periodic surveys of the population such as the ACSUS. Hospital admissions through the emergency room and the number of administrative,

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Access to Health Care in America or ''outlier," days can be obtained from the National Center for Health Statistics (NCHS), which maintains ongoing data on a large number of hospital discharge abstracts used to estimate population-level hospital use rates by discharge diagnosis. Considerable care must be taken in interpreting the meaning of admission through the emergency room and extended hospital stays, since the medical care system is not necessarily the most efficient structure for redressing other societal inequities (e.g., limited social support and financial resources for intravenous drug users, lack of drug treatment program openings that could facilitate their discharge). Moreover, in many parts of the country, physicians instruct patients to enter the hospital through the emergency room, reflecting a hospital operating strategy. Because it is likely that hospitals in different areas use their emergency rooms in very different fashions, differences in rates of emergency room use by subgroups may reflect administrative styles and not merely access differences. Outcome indicators of access associated with the goal of reducing morbidity can be conceived of as avoiding unnecessary hospitalization and receiving care at home. The first of these can be measured by using a population-based uniform hospital discharge abstract system matched with a statewide AIDS registry at the zip code, or census tract, level. The registry data provide the denominator of AIDS cases, and the hospital discharge abstracts provide the numerator of admissions for specific conditions, such as Pneumocystis carinii pneumonia (PCP). Rates of PCP-related hospitalization for minorities and nonminorities can be compared on the assumption that effective prophylactic treatment would minimize hospitalization. A methodological limitation of the validity of this measure involves the transience of patients: many will not necessarily continue receiving care in a single hospital. Patients' addresses on discharge abstracts are often coded geographically by zip code or census tract; matching these codes with comparably coded registry information is problematic because either address may be incorrect, particularly among certain groups. Naturally, this bias would undermine the validity of any comparison. Since 1987, when uniform coding of AIDS with the International Classification of Diseases-9 framework began for hospital discharge and for vital and health statistics, death certificates have offered another source of data from which selected indicators can be derived. Among HIV disease-related deaths, the distribution of the location of death can be examined. As of 1989, the nationally standardized death certificate coding scheme has included a data element for deaths occurring at home as opposed to in the hospital, in a nursing home or at another site. Those AIDS patients who die at home could be compared on the basis of gender, age, race, and geographic area as an indicator of the availability and use of home health and out-of-hospital services.

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Access to Health Care in America Much health and social policymaking over the past several years has been devoted to buttressing community support services to reduce reliance on hospital care. Recently, McMillan and colleagues (1990) demonstrated that policies on hospices have affected the site of death of Medicare beneficiaries dying of cancer; the study used Medicare claims merged with death certificates. Some evidence suggests that AIDS patients also would prefer to die at home (Teno et al., 1992). Consequently, the proportion of deaths that occur at home can be a useful barometer of access to services that is particularly applicable when looking at age- and sex-adjusted rates within certain metropolitan areas known to have strong home support services. CONCLUSION Despite the promise of the various data systems that have been suggested as the basis for deriving access indicators, the rapidly changing circumstances of the epidemic, the variability in state programs offering subsidized or free care to the poor, and the regional variation in Medicaid coverage make it difficult to imagine a data system that would have complete disease, health utilization, and outcome data on a representative sample of persons with HIV. Consequently, even given a better understanding of the meaning of the suggested indicators, the result is likely to be a series of incomplete snapshots. Each will have its own limitations and biases of which users, particularly policymakers, must be aware. Yet despite these limitations, many of the merged data system files proposed above hold considerable promise and should be explored further. By "cross walking" findings from the more detailed surveys, such as ACSUS, with the population-based utilization estimates derived from merged data systems, a more informed opinion could be obtained about the validity of the resulting access indicators. Ideally, when indicators such as those suggested here are assembled into a montage, they will form a more coherent, more consistent picture. REFERENCES AMA (American Medical Association) Council on Ethical and Judicial Affairs. 1988. Ethical issues involved in the growing AIDS crisis. Journal of the American Medical Association 259:1360–1361. American College of Physicians, Health and Public Policy Committee, and the Infectious Diseases Society of America. 1988. The acquired immunodeficiency syndrome (AIDS) and infection with the human immunodeficiency virus (HIV). Annals of Internal Medicine 258:2714–2717. Andrulis, D. P. 1989. Crisis at the Frontline. New York, NY: The Twentieth Century Fund, p. 50. Andrulis, D. P., Beers, V. S., Bentley, J. D., et al. 1987a. The provision and financing of medical care for AIDS patients in U.S. public and private teaching hospitals. Journal of the American Medical Association 258:1343–1346.

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