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SCare of Persons Infected with HIV AIDS and HIV infection have had a profoundly jarring effect on American health care. The relatively sudden appearance of large numbers of patients with a disease notable for its medical complexities and thorny social and ethical issues has highlighted inadequacies in current medical practice and the health care system. In the face of an epidemic, admin- istrators, researchers, practitioners, and policymakers alike are being forced to reconsider how medical care is provided in this country- both in clinical and fiscal terms and to seek solutions to the social and ethical quandaries that have surfaced during the process. Confronting AIDS outlined a model of patient care comprising appro- priate inpatient services for those most acutely ill and comprehensive outpatient care operating at the interface of hospitals and community- based agencies. Guiding the construction of the model was the principle that, to the greatest extent possible, care should be delivered in the community, rather than in hospitals or clinics, to make it more humane and more cost-effective. Nothing we have learned since 1986 about caring for persons with AIDS suggests the need to change this basic approach. Indeed, what has become clearer is its soundness and the areas in which we are currently succeeding or failing in its implementation. AIDS-dedicated inpatient units and outpatient clinics appear to be the optimal configuration for providing comprehensive AIDS care. The most effective staffing for such facilities is a multidisciplinary caregiving team that includes skilled generalists trained in AIDS treatment and specialists in such relevant areas as oncology and infectious diseases, as well as 93

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94 CONFRONTING AIDS: UPDATE 1988 physicians trained to conduct clinical trials of drugs and vaccines. The team would also include nurses and allied health personnel specifically trained in AIDS-related care, as well as trained counselors to assist patients (and health care workers) with the social, economic, ethical, and psychological concomitants of AIDS. Discharge planning involves the necessary arrangements for commu- nity or home services that should be made prior to hospital discharge and is a bridge between care in the hospital unit and care in the community. Yet effective discharge planning is often a problem for AIDS patients: gaps in health care financing, combined with a lack of federal, state, and community resources to provide the appropriate array of services, frequently result in disruption in the continuity of care and an increasing burden for public agencies. Since the publication of Confronting AIDS, there has been progress in improving care for patients with HIV infection and AIDS. However, many of the recommendations from that volume remain unaddressed. This chapter highlights some of those continuing concerns: appropriate health care settings for particular patient groups, the responsibilities and needs of health care providers, and the costs of and financing mechanisms for HIV-related care. CARE NEEDS OF SPECIAL PATIENT GROUPS The lack of some services, especially those involving residential placement and long-term care, becomes even more critical in the case of particular AIDS patient groups. The committee focused on the needs of three such populations: IV drug abusers, pediatric patients, and patients with dementia or other neuropsychological deficits. IV Drug Abusers In certain urban areas, growing numbers of IV drug abusers with AIDS have significantly strained health care resources and focused attention on gaps in the spectrum of care available to AIDS patients. Because IV drug abusers are usually impoverished and have few social supports, they rely almost entirely on the public medical system for care. In many cases, this system may not be sufficient to provide the level of treatment required by patients whose care is often complicated by severe presenting diagnoses, a debilitated state, and drug abuse. Some IV drug abusers with AIDS are also difficult to manage medically because of poor compliance with treatment recommendations. Even when community agencies have the resources to provide the necessary care, they may not be eager to extend services to such patients or their families.

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CARE OF PERSONS INFECTED WITH HIV 95 Once they leave the hospital, some drug-abusing patients may require long-term or nursing home care, which can be difficult to secure. In general, nursing homes are reluctant to accept any AIDS patients; they are even more reluctant to care for AIDS patients who also abuse drugs. IV drug abusers may also be homeless, which complicates hospital discharge planning and contributes to extended hospitalizations. New Jersey has implemented a posthospital residential program to provide follow-up care, drug treatment services, home care support, and housing to drug-abusing, homeless, and indigent AIDS and HIV-infected patients (IHPP, 19874. The committee believes more long-term residential facilities or group homes are needed for AIDS patients who are IV drug abusers. Those patients with ongoing substance abuse, mental illness, or both, in addition to AIDS, have a special need for these facilities. Infants and Children Pediatric AIDS is a growing problem, especially in New York City, northern New Jersey, and southern Florida. Approximately 1,000 cases have been reported nationally in children under 13; nearly 50 percent of these cases have been reported in the past 12 months. More than three-quarters of the total cases occurred among black and Hispanic children (CDC, 1988a). CDC estimates that there will be approximately 3,000 cases of AIDS in children by the end of 1991. Pediatric AIDS further disrupts families that may be already weakened as a result of parental drug abuse or HIV infection (Boland, 19871. Approximately 75 percent of children who develop AIDS are infected perinatally; about 80 percent of perinatally infected children come from families in which one or both parents are IV drug abusers (Curran et al., 19881. The mothers of these children are usually infected or ill with AIDS themselves; progressive physical illness may limit their ability to care for their children adequately. In addition, children with AIDS are usually poor and bereft of social or community support systems; they remain hospitalized for prolonged periods. When pediatric AIDS patients are discharged, there is frequently a lack of medical follow-up (D. Axelrod, State of New York Department of Health, personal communication, 1988~. All of these circumstances complicate the task of providing adequate care to pediatric patients and their families. Ideally, what is needed is a range of coordinated medical and social services including multidisciplin- ary inpatient care, outpatient treatment, and community-based support options that include but are not limited to day care, home care, and respite care. Such services allow children to remain with their families- the most desirable course and may help to preserve the family unit

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96 CONFRONTING AIDS: UPDATE 1988 (PHS, 19871. For children who are homeless or abandoned, foster care may be appropriate, although it is difficult to secure because of unfounded fears of disease transmission through casual household contact (Cotton, 1988~. The committee urges that foster care, communi- ty-based residential care, and hospice care programs be developed or expanded to meet the needs of pediatric AIDS patients and their families so that hospitals are no longer the "home of last resort." To overcome the problem of scarce foster care services, innovative community-based homes may be essential. Currently, adult residential or long-term care facilities are not equipped to care for pediatric patients, and pediatric facilities cannot accommodate the mothers of sick children. Communi- ties should seek to develop "family" homes that would allow children and their mothers (who may require medical and drug abuse treatment services) to remain together. Patients with Dementia or Other Neuropsychological Deficits Patients with dementia or other neurological disorders require a level of care that is not appropriately provided in an acute care setting. These patients frequently need custodial care more than treatment, and chronic care or extended care facilities are generally the setting of choice. Yet this intermediate level of care is extremely limited or even nonexistent in many cities. As noted earlier, nursing homes and other long-term care facilities are reluctant to admit AIDS patients, often because of un- founded fears of contagion or difficulties in handling patients with infectious diseases (PHS, 1988~. Limited reimbursement for nursing home and skilled nursing facility costs also contributes to the other problems encountered in placing patients with dementia in an appropriate care setting. The break-even costs for long-term care of patients with HIV- related disorders are estimated to be close to $200 to $300 per day; yet most reimbursements for nursing home or skilled nursing facility care are only about $50 per day (Benjamin, 19881. The committee recommends that skilled nursing facilities or nursing homes providing inpatient long-term or hospice care be made available to AIDS patients who require these service~for example, through the construction of AIDS-dedicated facilities or by offering incentive payments to facilities that are willing to accept AIDS patients. HEALTH CARE PROVIDERS Although health care providers continue to enter the field of AIDS patient care, they are not being recruited at a rate commensurate with the epidemic's growth. What is still a relatively small group of providers may

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CARE OF PERSONS INFECTED WITH HIV 97 soon exceed its physical and emotional capacities to provide care to additional patients. Physicians and other health care workers have an ethical obligation to care for HIV-infected patients; yet this responsibility must be complemented by adequate psychological support, training, and guidance about the occupational risk of HIV infection for health care providers. The following sections examine these issues and propose guidelines for action. Ethical Aspects of Providing Care AIDS has forced health care providers to reexamine some of the fundamental tenets of their professions, prompting them to question their obligation to care for patients who may expose them to some risk of infection. This same question has arisen in previous epidemics, but history reveals no consistent response (Zuger and Miles,` 19871. The HIV epidemic, however, differs considerably from earlier epidemics. Despite its dire nature, the risk of contagion is not as great, the modes of HIV transmission are known, and the risk to health care workers can be minimized through the prudent use of infection control procedures (Gerberding and the University of California at San Francisco Task Force on AIDS, 1986~. Occupational Risks Although the probability that a health care provider will acquire HIV infection on the job is low, it is not zero. There have been 15 well- documented and well-publicized cases in which seroconversion followed a health care worker's exposure to the blood or body fluids of an infected patient and in which nonoccupational risk factors were ruled out to a great extent (CDC, 1988b). Included among these cases are those of three health care workers for whom the exact route of transmission is not known; all three had direct, non-needle-stick exposures to blood from infected patients, and all had skin lesions or mucous membrane exposure that may have provided the route of transmission (CDC, 1987b). As discussed in Chapter 2, studies of health care workers following needle- stick exposure or mucous membrane splashes have quantified the risks involved (Henderson et al., 1986; McCray and the Cooperative Needle- stick Surveillance Group, 1986; McEvoy et al., 19871. For example, the occupational risk of acquiring HIV infection is considerably less than that of acquiring hepatitis B virus, a blood-borne virus transmitted in a similar fashion (Gerberding et al., 19871. In 1986 an estimated 18,000 health care workers contracted hepatitis B. It is estimated that there is a 6 to 30 percent risk of infection following needle-stick exposure to hepatitis B

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98 CONFRONTING AIDS: UPDATE1988 virus; in contrast, the risk of acquiring HIV infection from a needle stick is estimated to be less than 1 percent (Grady et al., 1978; Seeffet al., 1978; Vlahov and Polk, 1987; CDC, 1988b).* Documentation of the risk of occupational HIV exposure has been accompanied by reports of high rates of seropositivity among specific types of patients in certain areas. One such report revealed that, in a series of patients admitted to the emergency room of an urban teaching hospital, 16 percent of the trauma patients aged 24 to 39 were HIV positive (Baker et al., 1987~. Health care workers who provide emergency medical caretrauma physicians, nurses, and paramedics have ex- pressed concern because they often render assistance without knowing the patient or the patient's medical history. Moreover, the exigencies of trauma care may make it difficult to comply with the usual infection control procedures. Surgeons are particularly concerned about their risk of infection: they are often splattered with blood during the course of an operation or may find their gloves accidentally pierced by sharp instruments or fragments of bone. Some surgeons have refused to care for patients without the reassurance of a seronegative test status; a few prominent surgeons have publicly announced that they will not treat AIDS patients (Gruson, 19871. Among health care workers in general, there appears to be increased concern about the risk of treating HIV-infected patients; there is also a growing willingness to question their ethical obligation to treat such patients. Link and coworkers (1988) surveyed 258 doctors in New York City and found that 25 percent believed it would be ethical to refuse treatment to an AIDS patient. Should such refusals to treat become more routine, the effect on patients and on the health care delivery system could be profound. Professional Obligations Professional associations have recently begun to address the HIV threat to their members. Historical precedent and the codes of ethical conduct promulgated by professional associations do not provide specific guidelines for the HIV epidemic. The idea that Americans have the right of equitable access to a basic level of health care has had much popular *Guidelines from CDC (containing detailed and extensive infection control precautions) suggest a protocol to follow in the event of a needle stick or similar exposure to a patient who has AIDS or is seropositive or to a patient whose serologic status is unknown (CDC, 1987a). In addition, HHS and the Occupational Safety and Health Administration of the Department of Labor have issued detailed joint guidelines that specify particular infection control precautions (DOL / DHHS, 1987).

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CARE OF PERSONS INFECTED WITH HIV 99 and political support (President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research, 1983~. Yet the rights of patients to receive health care do not necessarily translate into the duties of health care providers in treating individual patients, as opposed to the obligation of the medical professions and society as a whole to provide care for infectious persons. In modern ethical discourse, the freedom and discretion of physicians are protected, as well as the rights of patients. It is not clear that physicians have an obligation to expose themselves even to small risks. (Physicians who are employees of hospital emergency rooms or of municipal or other public hospitals are an exception.) Although doctor-patient models based either on rights or a contract would allow physicians considerable latitude in choosing to whom they offer their services, these models have been roundly criticized for reducing medicine to a business. Some critics have called for a medical ethic based on virtue, a model of the doctor-patient relationship that would obligate a physician to assume a degree of personal risk (Pellegrino, 1987~. The debate over professional obligations resulted in the adoption of a policy statement in 1987 by the American Medical Association that a physician "may not ethically refuse to treat a patient whose condition is within the physician's current realm of competence" merely because the patient has AIDS or is seropositive (AMA, 1987, p. 41. The American Nurses' Association has also clarified its position regarding nurses' responsibility to care for HIV-infected individuals: "Nursing is resolute in its perspective that care should be delivered without prejudice, and it makes no allowance for use of the patient's personal attributes or socioeconomic status or the nature of the health problems as grounds for discrimination" (American Nurses' Association, Committee on Ethics 1986, p. 1~. The committee endorses the policies of the American Medical Association and the American Nurses' Association. The committee believes that the health professions have a compact with society to treat patients with all forms of illness, including HIV infection and AIDS. To deny or compromise treatment to any patient on the grounds that a medical risk is posed to the provider is to break the fundamental trust between patient and caregiver. In determining hospital policies on infection control, professional codes of ethical duties to patients, and guidelines for dealing with professionals who refuse to treat certain patients, a major question is whether the degree of fear is consonant with the actual risks involved (Eisenberg, 19861. Yet in the case of AIDS, the experts have been unable to agree on the appropriate level of concern and the degree of danger. Moreover, actual risks are not distributed uniformly across all health professions, nor are perceptions of risk or duty consistent among health care workers.

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100 CONFRONTING AIDS: UPDATE 1988 The concepts underpinning the responsibility to care for AIDS patients may have a variety of sociological determinants, including professional values and training. Individual psychological factors and workers' high expectations of occupational safety in the hospital and laboratory envi- ronment (in contrast to much of the history of medical care) may also come into play to determine a person's tolerance of risk. The committee recommends that assessments of the risk of occupational transmission of HIV continue and that new data be published as widely as possible. Techniques to further reduce the risk of occupational HIV transmission should also be explored. Decision making about infection control policies should include representatives of those groups of health care workers who are at greatest risk for infection. To assume that health care professionals need only a statistical appre- ciation of risk to assume the mantle of professional virtue in caring for AIDS patients is to deny their humanity. Concerns about AIDS involve symbolic as well as actual dangers. Issues other than nosocomial (hospi- tal-based) transmission may contribute to the reluctance of hospital staff to treat or interact with AIDS patients. More needs to be known about the most effective ways of educating and counseling reluctant or apprehen- sive personnel. In such efforts, institutional policies frame the issues and have a considerable impact on the attitudes of caregivers. Health Care Worker Screening There have been no reported cases of the infection of a patient by a seropositive caregiver in the course of treatment. Nonetheless, a theoret- ical risk of iatrogenic infection exists and must be considered in address- ing the issue of health care worker screening. Should health care workers who are seropositive continue in their duties, or should they be discharged from their positions or otherwise limited in their practice? Few health care institutions have formal policies in this regard; the relatively few employees who have come to adminis- trators' or the public's attention have been dealt with on a case-by-case basis, sometimes to the accompaniment of considerable publicity. In one instance, a Cook County, Illinois, physician battled his hospital adminis- tration to be allowed to continue to practice medicine following his AIDS diagnosis; in another, a Mesquite, Texas, pediatrician was forced to close his private practice after a local newspaper disclosed his seropositive status, even though medical experts affirmed that he represented no danger to his patients. Serologic testing of health care workers to prevent HIV transmission raises concerns similar to those surrounding the prospect of routine screening of other populations (see Chapter 41. Such measures only

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CARE OF PERSONS INFECTED WITH HIV 101 discourage some infected health care providers from ascertaining their antibody status and thus prevent them from seeking the assessment, care, and counseling they may need (Adler, 19871. The American College of Physicians and the Infectious Diseases Society of America currently do not recommend routine testing of health care professionals because, according to CDC, there have been no reports of HIV transmission from infected health care workers performing invasive procedures, and such transmission would be expected to occur only rarely, if at all. Adherence to universal blood and body fluid precautions by seropositive health care providers should serve to further minimize any risk of HIV transmission to patients (CDC, 1987b; American College of Physicians and the Infec- tious Diseases Society of America, 19881. Should serologic testing programs for health care workers be developed in the future, such programs ought to apply the same principles used to develop screening for other populations (see Chapter 41. That is, informed consent must be secured, confidentiality safeguards must be established, and testing must be accompanied by appropriate counseling for seropo- sitive persons (CDC, 1987a). The reciprocal concerns of both patients and health care workers about serologic status and HIV transmission in the hospital add further fuel to what has become a continuing debate. The committee recommends that the Institute of Medicine convene a conference on the ramifications of routine testing for HIV antibodies in health care workers. The outcome of such a conference may help in the development of testing policies for hospitals and professional associations. Health Care Provider Training A major difficulty in organizing the resources of the health care system for AIDS treatment is the multifarious nature of the disease. In a patient with AIDS or HIV infection, any organ system can be the target of life-threatening infections or malignancies; often, several systems are involved. The psychosocial aspects of the disease are also prominent. Health care professionals need specific training in the care and treat- ment of AIDS patients to augment the knowledge and clinical expertise of their own medical specialities and subspecialities. Primary care providers in particular need AIDS-specific training to provide better care and to know when to refer patients to specialists. All providers should be capable of taking thorough medical histories that include relevant information on drug use and sexual behavior. They should also be able to recognize the signs and symptoms of HIV infection so that the disease can be diagnosed as early as possible, thus enabling infected individuals or persons at risk to receive prompt care and counseling to reduce transmission.

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102 CONFRONTING MDS: UPDATE eggs Several training efforts are currently under way. HHS's Health Re- sources and Services Administration has provided approximately 10 grants to develop AIDS regional education and training centers. The centers will operate in collaboration with health professions schools, community hospitals, local health departments, and other organizations with an interest in health professions training; their purpose is to prepare community primary care providers to diagnose, counsel, and care for persons with AIDS and other HIV-related conditions. Grantees will also be required to establish a local resource center for disseminating current information about AIDS. In addition, the National Institute of Mental Health has awarded contracts to 21 institutions (universities, professional associations, and volunteer organizations) to provide comprehensive training for health care providers and trainees (medical students and residents) in the medical and psychiatric complications of AIDS, as well as in the ethical, psychosocial, and prevention-related behavioral aspects of the disease. Such programs begin to fill the gap in AIDS-related provider training and education for health care professionals, but the need for such training far exceeds current efforts. AIDS education has been successfully ex- panded by marry speciality and subspeciality medical societies, and AIDS programs are well attended at society meetings. However, AIDS training has not yet been incorporated into most fellowship and house staff training programs outside of areas with a high prevalence of HIV infection. In addition to expanded postgraduate AIDS training, medical students and other health professions students would benefit from curricula that incorporate specific information about the diagnosis, prevention, and treatment of HIV infection and AIDS, as well as from clinical experience in the care of HIV-infected patients. Several areas need particular emphasis: (1) the potential risks involved in working in a health care profession in general; (2) confronting death, particularly that of young people; and (3) personal prejudices regarding sexual orientation and discomfort in discussing sexuality. The committee believes that it is the responsibility of the health profes- sions to stimulate adequate training in HIV infection and AIDS. One way to speed this process is to incorporate questions about AIDS and HIV infection into examinations for medical speciality and subspeciality board certification and state professional licensure; another is to offer continu- ing medical education courses. The committee recommends that basic curricula in all medical and health professions education programs be modified to ensure adequate training in the diagnosis, prevention, and treatment of HIV infection and AIDS, as well as in infection control measures.

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CARE OF PERSONS INFECTED WITH HIV 103 The Psychological Burden of AIDS Patient Care The care of AIDS patients has been found to engender severe and chronic emotional and psychological stress in health care providers (Blumenfield et al., 1987; Cooke and Koenig, 1987; Link et al., 19881. Physicians in training who treated many AIDS patients have reported nightmares, preoccupation with the fears of contracting AIDS and of transmitting it to a family member, and other manifestations of marked anxiety (Cooke and Koenig, 19871. Nurses have also reported increased emotional strain in treating AIDS patients as a result of the heavier nursing requirements (approximately 40 percent greater than for other patients, according to Green and coworkers [19871) and their intense, sustained contact with AIDS patients and family members (Okie and Carton, 19884.* Other factors that contribute to increased stress include the youth of the patients, the stigma attached to the disease, prejudice against high-risk groups, lack of medical knowledge and experience in treating HIV-related conditions, the physical and mental deterioration often associated with the disease, and the frequent fatalities. Health care workers need opportunities to share and examine the fears they confront daily in caring for AIDS and HIV-infected patients. Family members and friends who usually provide such relief may be unable to over the necessary emotional support because they too may be concerned about the risks associated with AIDS care and may not understand the motivations for providing it. Structured group sessions led by a trained counselor can help providers learn the necessary coping skills and provide psychological support against the "emotional brutalization" that comes with providing AIDS care. As one physician put it: "I have learned that by naming my fears I can move beyond them; there is no need to recoil . . . the search for understanding releases unexpected possibilities for action" (Shenson, 1988, p. 481. Despite an increasing awareness of the need for psychological support, there are few, if any, formal support groups in acute care inpatient facilities. Their establishment is often stymied by the twofold difficulty of financing programs that are viewed as luxuries (rather than as essential to the control of the epidemic) and of incorporating such programs into existing health care routines. Yet it is important that providers maintain their own health in order to render effective care. The committee recom- mends that research funding be made available to examine the feasibility *In addition, the AIDS epidemic has come at a time of nursing shortages. The recruitment and retention of nurses for inpatient acute care, even without AIDS, have been difficult, largely because of relatively low salaries and already stressful working conditions that are exacerbated by understaffing (Okun, 1988).

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112 CONFRONTING AIDS: UPDATE 1988 providing AIDS-related care: with less Medicaid coverage, many of their patients with AIDS are classified as "self-paying," which results in a disproportionate amount of unreimbursed care (Andrulis et al., 1987c). Thus, in states with stringent Medicaid eligibility requirements, cities, counties, and private payers are forced to underwrite the cost of AIDS treatment. This policy all too often results in inadequate financing of the total costs of AIDS patient care, thereby leaving public hospitals with insufficient support to cover treatment costs (Andrulis et al., 1987a). Confronted with growing caseloads and increasing levels of uncompen- sated care, public hospitals may find it impossible to remain solvent without some economic relief or shift in the burden of care. Medicare Medicare covers only a small proportion (1 percent) of AIDS patients* and bears an even smaller fraction of the total medical costs of AIDS (Roper, 19871. Given the demographics of HIV infection (most AIDS patients are under the age of 65), Medicare's dramatically lower share of treatment costs is not an unexpected finding. Furthermore, because the disease has a rapidly fatal course, it is unlikely that many AIDS patients will survive the 24-month waiting period to qualify for Medicare benefits. However, with the develop- ment of new treatment protocols that prolong the survival of AIDS patients, Medicare could become a significant payment source. Private Health Insurance There is some evidence that the proportion of AIDS patients who are covered by private health insurance has declined over time and that payment responsibilities are shifting increasingly to the public sector, primarily to Medicaid (Arno, 1987~. Kizer and coworkers (1987) noted that the proportion of AIDS patients covered by Medi-Cal (California Medicaid) rose from 12 percent to 20 percent between 1985 and 1986. This increase is a disturbing trend that may persist as patient demographics continue to change and as private health insurers seek to limit their exposure to financial risk. Almost all insurance companies now refuse to insure individual health insurance applicants with AIDS; 91 percent *As discussed in Confronting AIDS, Medicare covers AIDS patients through its disability program, which is tied to the Social Security Disability program. To be eligible, disabled workers must first meet the Social Security requirements for "insured status " and must be considered disabled according to the program's definition. They can then receive Social Security disability benefits for 24 months, after which they may begin to receive benefits under Medicare.

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CARE OF PERSONS INFECTED WITH HIV ~ ~3 refuse to insure those with antibodies to HIV (Health Insurance Associ- ation of America and the American Council of Life Insurance, 19861. Health insurance companies "screen" applicants for individual and small group health insurance policies by including AIDS-related questions on the health history portion of their applications; they do not generally question individuals covered under employment-related group policies. A recent report by Congress's Office of Technology Assessment (1988), which was based on a survey of commercial insurers, Blue Cross/Blue Shield plans, and health maintenance organizations, found that these insurers plan to reduce their exposure to the financial impact of AIDS. Possible strategies include reducing the amount of individual and small group insurance they sell by using tighter underwriting guidelines, ex- panding the use of HIV and other testing, adding AIDS questions to enrollment applications, and refusing to insure applicants with a history of sexually transmitted diseases. To maintain a more equitable distribution of AIDS-related medical costs, several states have enacted legislation that prohibits the use of HIV antibody testing to determine health insurability. In these states, private insurance companies can still protect themselves by writing policies that limit AIDS benefits or by refusing to sell health insurance to persons who reside in cities with high concentrations of AIDS cases (Bloom and Carliner, 19881. Alternative Financing Mechanisms to Improve Health Care Coverage In February 1988 the Institute of Medicine convened a meeting to examine the special problems associated with financing AIDS care and the inadequacies of the current health care financing system in the face of that task. A number of alternatives emerged from those discussions and are presented in the following sections. These options are not mutually exclusive; in fact, more than one financing scheme may be required to improve health care coverage for persons with AIDS and other HIV- infected individuals. Ensure Access to and Maintenance of Private Health Insurance Coverage Earlier sections of this chapter noted how the financial burden of AIDS care is being shifted to the public sector and away from private health insurers. To avoid the collapse of the public system from a weight it was never designed to bear, AIDS and HIV-infected patients must be able to secure private health insurance if they are not already covered or maintain, at least for a time, the coverage they already have. The

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1 14 CONFRONTING AIDS: UPDATE 1988 American College of Physicians (1988) has suggested a number of possible mechanisms to accomplish this goal: Provide incentives through the tax system or through other favorable treatment of insurers to increase the availability of open enrollment policies. Subsidize private insurance premiums for lower income persons. Protect the financial integrity of insurers from adverse selection in which some insurance companies, because of their more favorable policies, assume a disproportionate share of AIDS-related health insur- ance costs. Protection could be offered either through direct government assistance or through a system of spreading the costs of insuring HIV- infected persons among insurers. Increase the extension-of-coverage period mandated by the 1985 Con- solidated Omnibus Budget Reconciliation Act (COBRA) (P.L. 99-272), in which an employee leaving work can continue to pay the group rate premium for up to 18 months of additional coverage. If the 24-month waiting period for Medicare eligibility is not reduced, the COBRA extension should be in- creased to at least 24 months to prevent a gap in coverage. Provide government subsidies, based on income and resources, for any person exercising the COBRA extension option who cannot afford the premium. Modify Existing Medicaid Programs There is considerable variation across states with respect to Medicaid eligibility criteria and the scope of services offered to Medicaid recipients. The law requires coverage of certain mandatory services for example, inpatient and ambulatory hospital care (although the state may limit the number of hospital days covered or the level of services reimbursed), physician services, and skilled nursing facility and home health care for individuals aged 21 and older. Additional services may be offered at the state's discretion, including prescription drugs, intermediate care, hos- pice care, case management, and personal care services. Currently, 44 states cover zidovudine (AZT) through their Medicaid programs; 2 other states cover zidovudine only during inpatient hospital care (Buchanan, 19881.* Such variation among states raises the issue of fairness to *The Public Health Service administers a $30 million federal emergency fund (the AIDS Drug Reimbursement Program) to cover the costs of zidovudine (AZT) for low-income AIDS patients. Funds are distributed to the states in proportion to their share of all AIDS cases. To be eligible for drug reimbursement, individuals must meet state low-income standards, be ineligible for Medicaid or without private health insurance coverage, or live in a state whose Medicaid program does not cover zidovudine.

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CARE OF PERSONS INFECTED WITH HIV ~ ~ 5 beneficiaries of the different plans. Poor states are unlikely to offer the range of services and coverage that wealthier states can provide. Modifications to make Medicaid more uniform and efficient might include such measures as altering eligibility requirements so that more of the medically indigent are covered. Another possible change is to expand the range of services included in the benefits package, particularly those that are more cost-effective for example, intermediate care, hospice care, personal care services, and case management services. A third modification involves the determination of reimbursement rates for skilled nursing facility or nursing home care. Reimbursement rates could be adjusted to reflect the costs of the spectrum of patient care. Several states have attempted to augment the Medicaid services offered to AIDS patients and patients with other HIV-related conditions by using Medicaid waivers for home and community-based care. These waivers allow states to target AIDS patients (especially those who would other- wise require institutional care) for a broad range of community-based services that may be more appropriate for them and less costly to provide. States' applications for waivers, which are subject to federal approval through the Health Care Financing Administration, must document the cost-effectiveness of the proposed configuration of services. To date, seven states have developed community-based service programs through this mechanism. Establish State Risk Pools Risk pools have been offered in 15 states, and proposed in 12 others, as a way to provide health insurance for those who are uninsurable because of a preexisting medical condition (e.g., patients with AIDS or those who are seropositive) and for the low-income uninsured. Private health insurers in each state contribute to a risk pool to pay for insurance coverage for those participating in the pool. However, the responsibility for financing the pools has not been equally distributed: much of the burden has fallen on commercial insurers, Blue Cross/Blue Shield plans, and health maintenance organizations. This inequity is largely because of the unanticipated side effects of the Employee Retirement Income Secur- ity Act (ERISA) of 1974. The act was originally intended by Congress to ensure that workers received private pension and welfare benefits when they retired and to encourage employers to set up pension plans if they had not already done so. Yet because of the wording in the legislation (in particular, Section 514), state laws relating to employee welfare benefit plans (which generally include medical and hospital benefits) are pre- empted by federal law; state laws governing insured health plans are not. Self-insured employers (those who fund employee health benefits through

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~16 CONFRONTING AIDS: UPDATE 1988 their own assets) are also exempt from state regulation. In other words, self-insured firms are not required to contribute to state risk pools, comply with state-mandated benefit laws, or pay state-imposed premium taxes (IHPP, 1986~. Private insurance companies do not enjoy the same immunity from state regulation. Aside from the shrinking insurance base for risk pools, several other problems have been encountered with this type of plan. Enrollment has generally been low; available data for six of the fully operational plans in mid-1986 showed that only about 21,000 persons (a small fraction of the 37 million Americans who are uninsured) were participating in risk pools. There are no data on how many persons with AIDS or HIV infection are enrolled in the pools (IHPP, 1987~. Most of the pools have high annual premiums and large deductibles, which limit access for the low-income uninsured. To address some of these problems, the Minnesota and Oregon risk pools have granted "presumptive eligibility" status to AIDS patients; Wisconsin has also established a premium subsidy program to assist enrollees (a benefit not limited to AIDS patients) (IHPP, 19874. Modify Medicare Eligibility Criteria Pending legislation would eliminate the 24-month disability waiting period for persons with AIDS, a measure the Health Care Financing Administration estimates could cost Medicare an additional $2.1 billion to $8.3 billion over the next 5 years. If this waiting period were eliminated for all disabled individuals, the estimated additional cost would be $35 billion to $42 billion over the next 5 years (Roper, 19871. Although this option has merit in that it would be "disease neutral" (patients with a particular disease would not be treated preferentially), the potential costs to Medicare make it an unlikely alternative. Develop an AIDS Federal Grant Program An AIDS federal grant program directing funds to the states allows the federal government to participate in the financing of care for HIV-infected and AIDS patients while also influencing what services are offered and how they are delivered. Such a program would permit the federal government to establish a fixed payment level rather than obligating it to an open-ended financing system. For example, the federal government might agree to provide states with an amount per patient equal to 25 percent of the total annual amount needed for patients who follow an approved treatment protocol. In those states that continued to provide more expensive treatment, the fixed federal contribution rate would effectively be less than 25 percent; for those states that developed a more

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CARE OF PERSONS INFECTED WI TH HI V 11 7 efficient delivery system, the federal contribution rate would be greater than 25 percent, an incentive for providing care in the most appropriate and cost-effective manner. An AIDS grant program also enables federal health officials to offer technical assistance to states and local communities in designing appro- priate health service delivery patterns. The major advantage of such assistance is that models of care could be transferred across states for possible replication and evaluation, thereby reducing duplication of effort. Development of a Financing Strategy The committee recognizes the concerns that have been expressed about singling out AIDS patients and others with HIV-related illnesses for special consideration in the financing of health care. However, because the AIDS crisis is disrupting the health care delivery system (especially in high-prevalence areas), an interim solution to the problem of financing AIDS care is needed. The committee endorses an AIDS federal grant program as an interim measure to ensure that AIDS patients and those with HIV-related conditions have access to appropriate and cost-efEective care. This approach would offer some financial relief to those states and medical institutions that currently bear a disproportionate burden of AIDS care. It would also remove financial impediments to adequate medical care for HIV-infected persons and persons with AIDS who are presently uninsured or unable to obtain insurance through conventional means. Another urgent need is to remove the financial barriers that limit access to experimental therapies. The Public Health Service Intragovernmental Task Force on AIDS Health Care Delivery has recommended that all state Medicaid programs and private insurers consider reimbursement for costly AIDS medical therapies once FDA has approved them for treat- ment under a special investigational new drug (IND) status called treatment IND (see Chapter 6~. The committee would extend the task force recommendation to require such reimbursement. However, in the future, it may be necessary to develop a mechanism to establish priorities for coverage among potential therapies. Coverage should continue after the therapies have been approved for marketing; however, to limit the burden on public funds, consideration should also be given to copayments, sliding scales, and other cost-sharing mechanisms (PHS, 19881. An AIDS federal grant program and reimbursement for costly experi- mental therapies are two relatively limited financing approaches that can nevertheless bring some relief to an overburdened health care system. Yet temporary or piecemeal solutions to the problems of health care

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~ I ~ CONFRONTING MDS: UPDATE 1988 financing must not sidetrack or obscure the need for a more comprehen- sive and equitable scheme. The committee urges the federal government to take the lead in developing a comprehensive and coherent national plan for delivering and financing care for HIV-infected and AIDS patients. The following principles should guide the development of such a financing strategy: Health care coverage should begin when a person is diagnosed or identified as seropositive, thereby ensuring early access to adequate medical care. Consideration should be given to relieving the financial stress of certain localities particularly hard-hit by AIDS. Responsibility for financing care should be shared between the public and private sectors, which implies that some balance must be achieved between these sources of funding such that financial risk is equitably distributed. The payment mechanism should support and encourage the most cost-e~ective methods of delivering health care. The committee concurs with the American College of Physicians (1988) that the current crisis may serve as the crucible in which we can search for and test means of extending health care coverage to all of our citizens. REFERENCES Adler, M. 1987. Patient safety and doctors with HIV infection. Brit. Med. J. 295: 1297-1298. AMA (American Medical Association). 1987. Report of the Council on Ethical and Judicial Affairs: Ethical Issues Involved in the Growing AIDS Crisis. Chicago: American Medical Association. American College of Physicians. 1988. Financing the care of patients with the acquired immunodeficiency syndrome (AIDS). Ann. Intern. Med. 108:470-473. American College of Physicians and the Infectious Diseases Society of America. 1988. The acquired immunodeficiency syndrome (AIDS) and infection with the human immunode- ficiency virus (HIV). Ann. Intern. Med. 108:460-469. American Nurses' Association, Committee on Ethics. 1986. Statement regarding risk versus responsibility in providing nursing care. American Nurses' Association, Kansas City. Andrulis, D. P., V. S. Beers, J. D. Bentley, and L. S. Gage. 1987a. The 1985 NAPH/COTH AIDS Survey: Final Report. Washington, D.C.: National Association of Public Hospitals. Andrulis, D. P., V. S. Beers, J. D. Bentley, and L. S. Gage. 1987b. The provision and financing of medical care for AIDS patients in U.S. public and private teaching hospitals. J. Am. Med. Assoc. 258:1343-1346. Andrulis, D. P., V. S. Beers, J. D. Bentley, and L. S. Gage. 1987c. State Medicaid policies and hospital care for AIDS patients. Health Affairs 6:110-118. Arno, P. S. 1986. The nonprofit sector's response to the AIDS epidemic: Community-based services in San Francisco. Am. J. Public Health 76:1325-1330. Arno, P. S. 1987. The economic impact of AIDS. J. Am. Med. Assoc. 258:1376-1377.

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CARE OF PERSONS INFECTED WITH HIV ~19 Arno, P. S., and R. G. Hughes. 1987. Local policy responses to the AIDS epidemic: New York and San Francisco. N.Y. State J. Med. 87:264-272. Baker, J. L., G. D. Kelen, K. T. Sivertson, and T. C. Quinn. 1987. Unsuspected human immunodeficiency virus in critically ill emergency patients. J. Am. Med. Assoc. 257:2609-2611. Benjamin, A. E. 1988. AIDS and nursing homes. Institute for Health Policy Studies, University of California, San Francisco. Bloom, D. E., and G. Carliner. 1988. The economic impact of AIDS in the United States. Science 239:604-610. Blumenfield, M., P. J. Smith, J. Milazzo, S. Seropian, and G. P. Wormser. 1987. Survey of attitudes of nurses working with AIDS patients. Gen. Hosp. Psychiatry 9:58-63. Boland, M. G. 1987. Management of the child with HIV infection: Implications for service delivery. Pp. 41-43 in Report of the Surgeon General's Workshop on Children with HIV Infection and Their Families. Washington, D.C.: U.S. Public Health Service. Buchanan, R. J. 1988. State Medicaid coverage of AZT and AIDS-related policies. Am. J. Public Health 78:432-436. CDC (Centers for Disease Control). 1987a. Recommendations for the prevention of HIV transmission in health-care settings. Morbid. Mortal. Wkly. Rep. 36:3S-18S. CDC. 1987b. Update: Human immunodeficiency virus infections in health care workers exposed to blood of infected patients. Morbid. Mortal. Wkly. Rep. 36:285-289. CDC. 1988a. Acquired Immunodeficiency Syndrome Weekly Surveillance Report United States, May 16, 1988. Atlanta, Gal: CDC. CDC. 1988b. Update: Acquired immunodeficiency syndrome and human immunodeficiency virus infection among health-care workers. Morbid. Mortal. Wkly. Rep. 37:229-239. Cooke, M., and B. Koenig. 1987. Housestaff attitudes towards the acquired immunodefi- ciency syndrome. P. 154 in Abstracts of the Third International Conference on AIDS, Washington, D.C., June 1-5. Cotton, D. 1988. Pediatric AIDS: Compelling areas of need in research, treatment, and prevention. Correspondent paper. AIDS Activities Oversight Committee, Washington, D.C. Curran, J. W., H. W. Jaffe, A. M. Hardy, W. M. Morgan, R. M. Selik, and T. J. Dondero. 1988. Epidemiology of HIV infection and AIDS in the United States. Science 239:610-616. Des Jarlais, D. C., S. R. Friedman, and R. L. Stoneburner. 1988. HIV infection and intravenous drug use: Critical issues in transmission dynamics, infection outcomes, and prevention. Rev. Infect. Dis. 10:151-158. DOL/DHHS (Department of Labor/Department of Health and Human Services). 1987. Joint advisory notice: Protection against occupational exposure to hepatitis B virus (HBV) and human immunodeficiency virus (HIV). Fed. Regist. 52(210):41818-41824. Eisenberg, L. 1986. The genesis of fear: AIDS and the public's response to science. Law Med. Health Care 14:243-249. Gerberding, J. L., and the University of California at San Francisco Task Force on AIDS. 1986. Recommended infection-control policies for patients with human immunodeficiency virus infection an update. N. Engl. J. Med. 315:1562-1564. Gerberding, J. L., C. E. Bryant-LeBlanc, K. Nelson, A. R. Moss, D. Osmond, H. F. Chambers, J. R. Carlson, W. L. Drew, J. A. Levy, and M. A. Sande. 1987. Risk of transmitting the human immunodeficiency virus, cytomegalovirus, and hepatitis B virus to health care workers exposed to patients with AIDS and AIDS-related conditions. J. Infect. Dis. 156:1-8. Grady, G. F., A. A. Lee, A. M. Prince, G. L. Gitnick, K. A. Fawaz, G. N. Vyas, M. D. Levitt, J. R. Senior, J. T. Galambos, T. E. Bynum, J. W. Singleton, B. F. Clowdus, K.

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120 CONFRONTING AIDS: UPDATE 1988 Akdamar, R. D. Aach, E. I. Winkelman, G. M. Schiff, and T. Hersh. 1978. Hepatitis B immune globulin for accidental exposures among medical personnel: Final report of a multicenter controlled trial. J. Infect. Dis. 138:625-638. Green, J., M. Singer, N. Wintfeld, K. Schulman, and L. Passman. 1987. Projecting the impact of AIDS on hospitals. Health Affairs 6:19-31. Gruson, L. 1987. AIDS fear spawns ethics debate as some doctors withhold care. New York Times, July 11, p. A1. Hardy, A. M., K. Rauch, D. Echenberg, W. M. Morgan, and J. W. Curran. 1986. The economic impact of the first 10,000 cases of acquired immunodeficiency syndrome in the United States. J. Am. Med. Assoc. 255:209-211. Heagarty, M. C. 1987. Report from the front of medical care for children with AIDS. Correspondent paper. AIDS Activities Oversight Committee, Washington, D.C. Health Insurance Association of America and the American Council of Life Insurance. 1986. Results of the Health Insurance Association of America and American Council of Life Insurance AIDS survey of member companies. Cited in D. E. Bloom and G. Carliner. 1988. The economic impact of AIDS in the United States. Science 239:604-610. Henderson, D. K., A. J. Saah, B. T. Zak, R. A. Kaslow, H. C. Lane, T. Folks, W. C. Blackwelder, J. Schmitt, D. J. LaCamera, H. Masur, and A. S. Fauci. 1986. Risk of nosocomial infection with human T-cell lymphotropic virus type III/lymphadenopathy- associated virus in a large cohort of intensively exposed health care workers. Ann. Intern. Med. 104:644-647. IHPP (Intergovernmental Health Policy Project). 1986. Focus On: ERISA and the States. Washington, D.C.: George Washington University. IHPP. 1987. AIDS: A Public Health Challenge, M. Rowe and C. Ryan, eds., 3 vols. Washington, D.C.: George Washington University. Kizer, K., J. Rodriguez, and G. F. McHolland. 1987. An Updated Quantitative Analysis of AIDS in California. Sacramento: California Department of Health Services. Link, R. N., A. R. Feingold, M. H. Charap, K. Freeman, and S. P. Shelov. 1988. Concerns of medical and pediatric house officers about acquiring AIDS from their patients. Am. J. Public Health 78:455-459. McCray, E., and the Cooperative Needlestick Surveillance Group. 1986. Occupational risk of the acquired immunodeficiency syndrome among health care workers. N. Engl. J. Med. 314:1127-1132. McEvoy, M., K. Porter, P. Mortimer, N. Simmons, and D. Shanson. 1987. Prospective study of clinical, laboratory, and ancillary staff with accidental exposures to blood or other body fluids from patients infected with HIV. Br. Med. J. 294:1595-1597. NCHSR/HCTA (National Center for Health Services Research and Health Care Technology Assessment). 1988. AIDS-related health services research agenda. Draft. Washington, D.C. Office of Technology Assessment. 1988. AIDS and Health Insurance. Washington, D.C.: Office of Technology Assessment. Okie, S., and B. Carton. 1988. The stress of treating AIDS. Washington Post, January 19, p. A1. Okun, S. 1988. Lack of nurses impedes New York AIDS care. New York Times, February 23, p. A1. Pellegrino, E. D. 1987. Altruism, self-interest and medical ethics. J. Am. Med. Assoc. 258: 1939-1940. PHS (Public Health Service). 1987. Report of the Surgeon General's Workshop on Children with HIV Infection and Their Families. Washington, D.C.: U.S. Public Health Service. PHS. 1988. Report of the Intragovernmental Task Force on AIDS Health Care Delivery. Washington, D.C.: U.S. Public Health Service.

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