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OCR for page 139
Care of Persons Infected with HIV
The medical care of patients infected with HIV is a problem involving
a complex, multisystem disease process, multiple hospitalizations, inva-
sive diagnostic testing, and an extremely high mortality rate. Hospital-
based medical services are particularly strained by these clinical features,
and community-based services are strained additionally by the inadequate
financial and social reserves of many patients and by the lingering fear of
contagion associated with the epidemic. The background paper prepared
for the committee by Green et al. (1986) provides more detail on the
strains likely to be imposed on hospital services.
This chapter, particularly the sections devoted to health care and
psychosocial support, lays out what the committee feels is desirable for
persons infected with HIV, particularly those with AIDS. Their needs for
care In some instances are similar to those of other patients with
catastrophic or terminal illnesses, such as cancer. While focusing on
needs related to HIV, the committee believes that the health care system
should strive to provide a desirable level of care for all patients.
. . .
ROLES OF HEALTH CARE PROVIDERS
The newness of AIDS and the concentration of cases in a few
geographic areas have hindered evolution of the most appropriate overall
medical management of patients with HIV-associated conditions. HIV
infection is a new condition, but the associated opportunistic infections
and cancers occur in other situations.
139
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140 CONFRONTING AIDS
No satisfactory treatment for HIV infection is yet available, although a
number of experimental drugs are undergoing testing in clinical trials (see
section on "Antiviral Agents" in Chapter 61. While methods for the
management of opportunistic infections and cancers in AIDS patients are
evolving, thus far they have not significantly lengthened the survival time
of these patients.
Most physicians have not yet treated persons infected with HIV.
However, physicians in all areas need to be aware of signs and symptoms
of HIV infection so that early diagnosis can be made, enabling all infected
individuals to receive prompt care and counseling to reduce transmission.
As the AIDS epidemic grows, a variety of practitioners are becoming
identified as "AIDS specialists"; not surprisingly, most to date have been
infectious-disease specialists and oncologists. In addition, growing num-
bers of clinical immunologists, pediatricians, and psychiatrists are under-
taking the management of HIV-infected patients. Other practitioners who
will probably develop expertise as AIDS specialists are neurologists and
obstetricians.
Because of the widening spectrum of disease manifestations associated
with HIV infection and the variety of therapeutic skills that are needed to
treat such patients optimally, it appears likely that a diverse group of
practitioners will continue to provide care for AIDS patients. Most
specialists currently involved in treating AIDS patients are hospital-based
physicians. As the epidemic grows, practitioners in health maintenance
organizations and in private practice will increasingly need to provide
primary care to patients.
Recommendations
· Medical specialty and professional organizations should undertake
educational activities for example, the distribution of materials designed
to alert physicians, dentists, and other health professionals to the signs
and symptoms of HIV infection, and the preparation of informative
material for patients.
· The National Center for Health Services Research and Health Care
Technology Assessment should commission representatives from the
relevant medical and health care specialties to assess periodically the
treatment of HIV infection and associated conditions, to suggest optimal
treatment, and to disseminate this information to health care providers.
· Medical and dental education programs from the undergraduate
through graduate and postgraduate levels should begin to incorporate
both academic and practical training concerning HIV infection into their
courses of study.
· Because HIV infection is now geographically concentrated in a
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CARE OF PERSONS INFECTED WITH HIV 141
relatively few areas of the country, it may be desirable for selected health
care providers from other areas to have short-term training in high-
incidence areas before the epidemic spreads to their purview.
HEALTH CARE SETTINGS FOR AIDS PATIENTS
Hospital Care
The clinical course of AIDS is characterized by a progressive decline in
immune competence and by repeated episodes of severe opportunistic
infections, which lead to hospitalization for diagnosis and therapy. No
single system of inpatient care will work equally well in all hospitals.
Factors that influence the optimal system of hospital care include the type
of hospital, the patient mix (as between homosexuals and IV drug users),
and the number of AIDS patients cared for by the hospital.
Some hospitals dealing with large numbers of inpatients with AIDS
have established centralized, dedicated units for the purpose of delivering
AIDS care (Volberding, 19851. Modeled largely on the first AIDS unit,
located at San Francisco General Hospital, these units are similar in many
respects to oncology wards. Typically, patients with AIDS are cared for
in a discrete area of the hospital with nurses and psychosocial support
staff trained for the task. However, as the epidemic grows, those hospitals
with such units will not be able to house all of the AIDS and ARC patients
who need care unless capital investment is undertaken to expand their
facilities. Therefore, in the future such units may increasingly be used for
only the sickest patients. Alternatively, other forms of care, such as that
provided by AIDS teams, may be deemed more appropriate. However
configured, a system where the care of AIDS patients is distributed
among attending physicians and house staff is probably desirable because
of the diverse medical needs of these patients. Such distribution of care
can also help ensure adequate education of all medical personnel in what
will become an increasingly common disease and prevent "burnout" of
health care providers.
The hospital epidemiology service (which has responsibility for infec-
tion control) is often the organizational unit in the hospital responsible
both for formal AIDS training of physicians, nurses, and ancillary staff
and for handling day-to-day crises involving AIDS patient care and other
employee concerns, such as contagion. These units are becoming increas-
ingly overburdened by such demands. It is important that they be able to
increase their personnel so that other functions crucial to overall hospital
infection control are not compromised. The designation of a single
infection-control practitioner as the AIDS contact person has been a
successful approach in several hospitals.
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142 CONFRONTING AIDS
An important function of inpatient AIDS care is the efficient planning of
patients' discharges from the hospital. Because the greatest costs for the
overall care of patients with AIDS occur during hospitalization, reducing
the hospital stay should reduce overall costs (Scitovsky et al., 19861. To
do this, the AIDS staff can coordinate plans for eventual patient discharge
and integrate these plans with the outpatient clinic and available commu-
nity agencies.
Outpatient Care
The care of patients with a progressive and complex disease such as
AIDS, if it is to be both comprehensive and cost-effective, must be
directed as much as possible to the community. Yet this care must also
include access to appropriate inpatient facilities when hospitalization is
required, as it is in essentially all cases. These functions can best be
served by a carefully coordinated approach to the outpatient medical
management of patients with ARC or AIDS.
Outpatient medical care of AIDS patients must take into account the
multidisciplinary medical nature of the disease, the many psychosocial
difficulties experienced by patients, and the social setting in which the
disease occurs. For hospitals dealing with appreciable numbers of pa-
tients with HIV-related disease, outpatient care is best delivered through
a dedicated AIDS clinic. Such a clinic can, in its most developed form,
bring together complementary medical subspecialists, such as infectious-
disease, oncology, dermatology, and pulmonary medicine specialists.
This organization both takes advantage of the specialists' expertise and
facilitates exchange between them to improve the evaluation and treat-
ment of the broad spectrum of HIV-related problems. A dedicated AIDS
clinic with multidisciplinary representation can also decrease compliance
problems and the duplicate ordering of typically expensive laboratory and
invasive diagnostic procedures.
A dedicated AIDS clinic can effectively use physicians trained in
general internal medicine and family practice, who can provide an
important broad base of patient care. These physicians can serve as
models for the care of AIDS patients in private medical practice and in
areas of the country with relatively small numbers of patients, where
dedicated AIDS facilities are not yet required.
An important element in the medical care of AIDS outpatients is the use
of nursing staff and nurse practitioners (LaCamera et al., 19851. Nurse
practitioners, for example, can provide extensive routine patient care,
under appropriate guidance and supervision from physicians expert in the
clinical aspects of AIDS. Furthermore, nursing staff provide an important
role in patient education, often providing essential counseling services.
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CARE OF PERSONS INFECTED WITH HIV 143
The overall needs of patients cannot be met unless the various
outpatient services function in a well-coordinated manner. For this
coordination to occur, the specific needs of the clinic's population must
be considered, and key representatives of the professional staff must meet
on a regular basis to review these needs. Another direct effect of this
integration of medical care is the efficient use of both inpatient and
community-based care. Maintaining confidentiality in outpatient settings
will need due attention.
Community-Based AIDS Care
The real power of coordinated AIDS care plans is found in the
integration of hospital and outpatient care with those facets of patient care
based in the community (Abrams et al., 19861. Community-based care can
be broadly defined as care occurring at a patient's residence to supple-
ment or replace hospital-based care. At best, this care includes the
administration of medications with nursing supervision, the use of home-
based infusion of fluids and antibiotics, and home hospice programs
delivering social support and palliative care in the terminal stages of the
disease.
In San Francisco, a third function in addition to nursing and hospice
support has been added to the services available to patients with AIDS.
Shanti, a volunteer community agency concerned with death counseling,
organized a program known as the Shanti Project that, together with the
City of San Francisco, provides small-group housing for patients with
AIDS who otherwise would be unable to stay in independent residences.
In this program, several patients share an apartment that is regularly
monitored by volunteer Shanti staff members. These staff members assess
the adequacy of support services for residents and of contact agencies,
including visiting nurse services and a home hospice program, to alter
services as the conditions of residents change. Also, residents can help
care for each other, decreasing the need for attendant and homemaking
services, which can be difficult to reimburse. (The situation in San
Francisco is somewhat different from that in most other areas in that
homosexual men constitute a higher proportion of AIDS cases, and there
are few problems relating to addicted patients. It is also different in the
degree of acceptance and cohesiveness of the homosexual community,
which results in a large pool of volunteers to complement medical care.)
Care of AIDS patients at their place of residence is possible even in
very complex cases. However, it requires a substantial commitment from
service agencies involved in delivering this care and careful integration of
this care with more traditional systems of hospital-based care.
As might be anticipated from the complex nature of the medical
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144 CONFRONTING AIDS
conditions caused by HIV, the potential demands on home nursing
agencies are very large. At their most basic level, they include such
essential home functions as shopping, cleaning, preparing meals, and
maintaining personal hygiene. In most cases some of these services can
be provided by the patient or by family, friends, and neighbors. Where
such personal resources are nonexistent, services must be supplied.
In some communities, volunteer agencies have provided many of these
services. The Gay Men's Health Crisis in New York City, the Shanti
Project and the San Francisco AIDS Foundation in San Francisco, and
AIDS Project/LA in Los Angeles are prime examples of such agencies. In
cities or in patient groups where sufficient volunteer support is lacking,
these services must be provided and funded by private or public means.
A serious limitation in many cases where basic services are needed is the
amount of such care provided by insurance coverage (insurance issues are
discussed later in this chapter). In many instances, insurance coverage is
limited to services provided by registered or licensed nursing personnel,
even though the true need may be for less specialized and less expensive
attendant and homemaking care.
In addition to relatively straightforward assistance in performing daily
activities, AIDS patients at home often require more sophisticated and
specialized nursing intervention. For instance, patients may require IV
hydration because of persistent fevers, sweats, and/or diarrhea; they may
need IV antibiotics for the treatment of AIDS-associated opportunistic
infections; or they may require parenteral narcotics for the control of
pain. For these and similar services, nurses are required, even if the need
is sporadic. While many insurance policies cover such services, other
sources of reimbursement, such as Medicaid, either do not cover them or
do not provide enough reimbursement to allow efficient use of such
services.
As patients with AIDS become progressively more ill, the nature of
their care often changes from aggressive management of AIDS-related
illnesses to palliative support in anticipation of death. As this change
occurs, management should ideally move from a conventional medical
model to a hospice-oriented approach, which has been demonstrated to
be very effective in the care of patients with malignant diseases (Martin,
19861. In the hospice system, treatment is designed to palliate symptoms
rather than to reverse underlying disease processes.
As with other community-based systems, some hospice support can be
provided by volunteer agencies. In most cases, however, these are
inadequate, and paid programs play a more central role. Here, as in all
aspects of community-based care, reimbursement is an issue and can be
problematic. Because reimbursement for hospice care is not provided by
most insurance policies or by the government (excepting Medicare, with
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CARE OF PERSONS INFECTED WITH HIV 145
certain limitations), specific sources of support must be sought, often
from city or state agencies.
The several components of community-based care residential-facility
support, home attendant and homemaking care, home nursing care, and
home hospice care obviously overlap so extensively that coordination
of service planning is critical. To some degree this coordination should
occur during the careful planning of responsibilities of involved agencies
to minimize overlap. Still, communications between agencies are critical
and can best be facilitated by regular meetings of key members of these
groups. To further optimize this planning, hospital personnel representing
both inpatient and outpatient care should also be included. In this way, as
outpatient or inpatient nursing personnel recognize new needs of patients,
these needs can be brought to the attention of community-based agencies
for efficient planning.
The care of patients with AIDS and other HIV-related conditions needs
to take account of the fact that a significant proportion of patients
(homosexuals or IV drug users) may not have access to the support
traditionally provided by family members. Further, it may pose problems
in small communities where the range of health care services for any
condition may be limited.
In some areas of high incidence, models of care entailing extensive
community and peer support have been successful in shortening the
length of hospitalization required by AIDS patients. Two major programs,
funded by the Robert Wood Johnson Foundation and the Health Re-
sources and Services Administration, are being established to investigate
the transferability of models of care entailing extensive community
support to other areas of the country and other population groups.
Recommendations
· Actions should be stepped up to cope with the projected burden of
HIV-related illness on the medical care system.
· Although more research is needed to define the best approaches to
care in different settings, experience thus far favors inpatient care by units
or teams with a nursing and psychosocial support stab trained in AIDS
care and integrated with outpatient and community-based star.
· For areas with a high incidence of HIV infection, where the financial
impact of AIDS on health care systems will be great, attention should be
given to the development of AIDS-dedicated outpatient clinics. These
units should have a stab of pertinent medical specialists, generalists,
nurses and nurse practitioners, and specialists in psychosocial problems.
Nurses and other professionals with responsibilities for AIDS care should
receive special training and social support.
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146 CONFRONTING AIDS
· Systems of community-based care should be provided, where
needed, for AIDS patients. Such systems should be able to provide
attendant or homemaking services up to 24 hours daily as needed and
nursing staff able to provide IV hydration, IV antibiotics (including use of
experimental agents in certain cases), parenteral narcotics, and basic
physical assessments of additional HIV-related diseases requiring medi-
cal intervention. Social work professionals should also be available to
provide guidance and patient advocacy on housing, financial, legal, and
insurance problems.
· Home-based hospice support should be provided for the terminally
ill. Such support should include assessment and palliative treatment of
symptoms, including fevers, pain, and diarrhea; psychological support
and bereavement counseling for patients, lovers, family, and friends; and
assistance in the disposition of the deceased.
· Arrangements should be made to provide housing support, including
small-group housing facilities and/or supervised hotel accommodations,
and transportation of patients between medical facilities and place of
residence.
· The use of volunteer agencies to assist in patient care and counseling
should be encouraged (but services must be rendered by paid providers if
volunteers are not forthcoming).
· Representatives of existing agencies and health care providers should
organize AIDS care groups to coordinate presently fragmented efforts.
NEEDS OF SPECIFIC PATIENT POPULATIONS
All AIDS patients present great demands on the systems of medical
care. However, these demands are amplified even further in some
patients, including those with AIDS who use IV drugs, infants with AIDS,
patients with severe dementia, and patients who are institutionalized.
In contrast to other AIDS risk groups, IV drugs users typically are
socially and economically disadvantaged, with minimal, if any, social
supports. Thus, the burden of their care falls almost totally on the medical
system, with little expectation of assistance from family, friends, or
volunteers. Durations of hospitalization for IV drug users with AIDS are
said to be much longer than for homosexual men with AIDS. Also, their
often-continuing use of narcotics makes the use of community-based
group care settings much more difficult.
Infants with AIDS may be the most tragic of all AIDS cases. Often born
to mothers who use IV drugs, they frequently have no family support for
their medical care and social needs. This situation is now reaching crisis
proportions in New York City and Newark, New Jersey. In certain
hospitals in these areas, 15 percent of pediatric beds are already occupied
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CARE OF PERSONS INFECTED WITH HIV 147
by AIDS cases (M. Heagarty, Harlem Hospital, personal communication,
19861. There is a critical shortage of foster care families who are willing to
accept these children, and many are therefore spending their entire lives
in the hospital. Tragically, even children who are only seropositive, or
who are seronegative but are known to have drug-addicted mothers, are
difficult to place due to widespread fear of AIDS. During its deliberations,
the committee was told that there are increasing numbers of children in
New York City whose mothers and younger siblings have AIDS, who are
themselves seronegative, and who are facing the loss of their entire
families (Stoller, 19861. There is an urgent need for community social
agencies to respond to this situation.
Another set of patients who pose special problems are those suffering
from necrologic complications. Patients infected with HIV have an
extremely high incidence of central nervous system disease (Navia et al.,
1986; Perry and Jacobsen, 1986; Snider et al., 19831. In the majority of
cases, the resulting encephalopathy remains mild until death occurs from
some other complication. But in some, and perhaps with increasing
incidence, this encephalopathy progresses to severe and often fatal
dementia over a period of several months.
During this time continuous custodial care may be required. Irrespec-
tive of the level of family or social support, these patients can almost
never receive adequate care in a community-based setting, because they
require 24-hour-a-day surveillance. Because extended care facilities, in
almost all cases, refuse admittance to patients with AIDS, dementia will
lead to extended use of acute care hospital beds unless alternatives are
found.
Most mental health professionals have the training and expertise to help
patients with dementia. The problem therefore is not so much what
should be done, but where and by whom. The chronic care inpatient and
outpatient facilities available for such patients are already under pressure
in terms of space and funding, and this pressure will only increase in the
next few years as the number of AIDS cases increases.
In some settings, particularly where the number of cases is high,
problems may arise in staffing because of the psychological stresses
involved in caring for terminally ill patients. These may be reduced by
rotation of staff through particularly stressful situations and/or selection
of staff who handle such situations well.
Along with the usual problems associated with medical inpatients and
outpatients, additional problems are posed when an individual with AIDS
or an HIV-related disorder is institutionalized (for instance, in a psychi-
atric hospital, penal facility, or hospice). The authorities responsible for
such institutions have a responsibility for the health of all internees.
However, the institution may not have the capacity to treat the patient's
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148 CONFRONTING AIDS
medical and psychiatric problems, and other patients, inmates, or care-
takers may have a fear of acquiring AIDS (Douglas et al., 1985; Polan et
al., 19851. No single remedy is applicable to all situations, but in most
settings such patients can participate with others in general activities
without posing a danger to themselves or others. Whatever the solution in
a particular situation, there is no doubt that the cost of providing care in
these facilities will increase as more patients with AIDS and HIV-related
disorders are institutionalized.
Overall, adequate inpatient and outpatient facilities are simply not yet
available for many AIDS patients who lack insurance, financial resources,
or a supportive network, especially in areas where the prevalence of
AIDS is high (Nichols, 19851. This situation must be remedied. Moreover,
chronic care facilities are often reluctant to accept patients with AIDS
either because of the patients' medical requirements or because of fears of
contagion (Cassens, 1985; Christ et al., 19861. As a result, some patients
often stay for a prolonged period of time in a general hospital, increasing
the cost both to the individual and to the public.
PSYCHIATRIC AND PSYCHOSOCIAL SUPPORT
Needs of Patients with AIDS
In terms of general psychiatric management, patients with AIDS who
are most severely ill pose the least perplexing problems. The problems
may be severe, but they are familiar to mental health professionals who
regularly see patients in the general hospital. For instance, a prominent
psychiatric problem is depression (Holland and Tross, 1985; Tross, 19851.
This depression is not simply a normal grief response to having a fatal
illness, but rather a pathological process characterized by alienation,
irrational guilt, diminished self-esteem, and, at times, pronounced sui-
cidal thoughts (Perry and Markowitz, in press). These symptoms are
related to conscious and unconscious conflicts about the way in which the
disease was acquired and what it means to the particular patient.
Psychotherapy, antidepressant medication, and precautions to prevent
suicide may all be necessary.
The psychiatric interventions for patients suffering from dementia are
similar to those for the general management of mental disorders. A
therapist can help these patients establish structure in their daily living,
set limits appropriate to the patient's current capacities, decrease hypo-
chondriacal preoccupations with reasonable reassurance, reduce self-
destructive or impulsive acts, and help the patient with financial matters,
including the preparation of a will. If available, family members should be
counseled about providing the patient with custodial care and arranging
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CARE OF PERSONS INFECTED WITH HIV 149
for eventual institutionalization if necessary, although these facilities will
be increasingly difficult to obtain. Psychopharmacologic agents may be of
help in severe cases (Perry and Markowitz, in press).
Some AIDS patients may remain unreasonably hopeful about recovery
despite the presence of their fatal illness. When the denial has become so
extreme that it interferes with the patient's receiving palliative medical
care or when it jeopardizes others because the patient refuses to practice
risk-reducing behaviors, the denial must be confronted and treatment
instituted.
Compounding the psychological problems posed by AIDS (coping with
death in a young adult, disfigurement, physical weakness, and pain) are
psychosocial stresses that are more particular to the AIDS epidemic.
These include ostracism by family, friends, and some physicians; lack of
a supportive social network; and the paucity of facilities, funding, and
health care providers (Morin et al., 1984~. In addition, most of these
individuals realize that not only are they infected, but they are infectious.
The realistic and irrational concerns about transmitting the virus to others
places an enormous burden on an individual already profoundly con-
cerned about his or her own health.
Most trained mental health professionals with a basic knowledge of
AIDS can provide the support, psychotherapy, and, if necessary, psy-
chopharmacotherapy to treat the anxiety, grief, depression, hypochon-
driacal preoccupations, alienation, and avoidance behavior experienced
by these patients. More of a problem is finding clinicians available for this
task as the epidemic becomes more pervasive. Existing voluntary agen-
cies (such as the Gay Men's Health Crisis in New York City or the Shanti
Project in San Francisco) have limited resources, and similar agencies are
not available in most other locations. Although cost-efficient self-help
groups are valuable for many, they are not applicable for all; some
individuals have unique problems or are too concerned about issues of
confidentiality to participate in a group process. In addition, public and
private organizations have been sluggish in responding to the psychoso-
cial needs of these individuals, in part because the epidemic has been
largely confined to homosexual men and IV drug users.
Needs of Patients with ARC
ARC patients present particularly difficult problems because of ARC's
complex spectrum. Some patients with severe ARC, who may suffer from
problems such as dementia, cachexia, and intractable diarrhea, may be
more incapacitated than some patients with AIDS.
Longitudinal studies have been conducted in which homosexual pa-
tients with AIDS or ARC have been psychologically assessed using
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166 CONFRONTING AIDS
this inadequate coverage are lack of employment, jobs without fringe
benefits, or the fact that these individuals are poor medical risks. In
addition, one in five American families, 16 million families altogether,
incur medical costs that exceed 5 percent of their gross income (Congres-
sional Research Service, 19861. The burden of paying for health care that
is not covered by insurance falls on the recipients directly, on health care
providers, and on existing public finance systems.
Several legislative proposals have been introduced in Congress in
recent years to address these issues. Of the proposals that have passed,
the Consolidated Omnibus Budget Reconciliation Act of 1985 (U.S.
Congress, 1986) is the most pertinent to AIDS. This act makes persons
whose employment has been terminated, in most circumstances, eligible
for 18 months of continued health insurance coverage, for themselves and
their dependents, at 102 percent of the employer's cost if they worked for
an employer with more than 20 employees. At the end of the continuation
period, a conversion policy will generally be available. The provisions of
this legislation could be used by ARC or AIDS patients whose employ-
ment was terminated. However, its usefulness is limited by the require-
ment of prior employment. In addition, a U.S. Department of Health and
Human Services task force is currently examining various options for
dealing with catastrophic health costs and incomplete coverage (Bower,
19861. Among the options under consideration are the following:
· Expanding Medicare and Medicaid to serve a broader population or,
specifically through Medicaid, offering otherwise ineligible persons the
option of purchasing some form of catastrophic protection;
· Authorizing "medical individual retirement accounts";
· Implementing catastrophic provisions in employee health insurance
plans;
· Providing federal subsidies for nonfederal catastrophic policies;
· Providing low-cost, subsidized coverage to uninsured low-income
and unemployed persons through state insurance pools; and
· Imposing a small federal tax to allow state payment of catastrophic
illness policies for persons incurring expenses exceeding 20 percent of
family income.
Emerging Issues
The health insurance covering the majority of Americans, whether
private companies or public programs, is seldom specific to a particular
disease. A major exception is the end-stage renal disease (ESRD)
program of Medicare (Eggers et al., 19841.
Consideration of financing AIDS care raises a number of questions. For
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CARE OF PERSONS INFECTED WITH HIV 167
example: Are the problems and costs associated with AIDS (or, more
broadly, HIV-related conditions) sufficiently compelling for it to be
singled out for some special form of financial treatment, as with end-stage
renal disease? If so, what types of care should be covered? If not, how
can the current arrangements be improved to better cope with the
problems that AIDS and other diseases pose? What manifestations of
HIV infection other than AIDS might need specific financial consider-
ation? Would such coverage arise from local or national sources, from
private or public sources? What criteria or principles should govern
public policy decisions affecting such coverage? In the application of such
principles, what epidemiologic, clinical, and economic data would be
relevant?
Issues that are emerging in relation to the financing of care for
HIV-related conditions include the following:
· Many affected individuals, particularly IV drug users, may have no
health insurance.
· Some individuals seeking health insurance coverage may be aware
that their behavior has put them at risk for HIV infection, but may not
wish to reveal this if it affects their likelihood of obtaining insurance.
· Providers of insurance, when entering into insurance contracts,
would like to be able to assess the financial risk the contract entails for
them and to be permitted to use reasonable "tools" to ascertain this.
· Gaps may exist in the coverage provided by insurance or public
programs. For example, many programs have exclusions, will not pay for
care provided while a patient is receiving experimental therapy (as much
of AIDS therapy presently is, since it is a new disease), or may not cover
community-based services such as home care.
· Use of the CDC surveillance definition of AIDS as a criterion for
eligibility for certain types of financing (e.g. Medicaid) is limiting because
it excludes other severe HIV-associated conditions that may be equally
disabling.
· The two-year waiting period to qualify for Medicare disability
excludes most individuals with AIDS because most of them do not
survive that long.
· Coverage of the costs of medical care for ARC patients and
seropositive individuals has received little study and remains unclear.
· The unreimbursed costs of care for AIDS patients at some hospitals
seem to be higher than average for patients generally, imposing a
disproportionate burden on certain geographic areas and institutions.
· AIDS is a particularly costly illness, and those whom it affects may
not have accumulated resources to offset these expenses.
· Pediatric AIDS is becoming a significant problem; society has
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168 CONFRONTING AIDS
traditionally accepted a special responsibility for the health of children,
especially if their parents are unable to provide for their needs.
· AIDS is a new problem that has rapidly added a considerable and
unequally distributed burden to the health care financing system, a burden
that will grow greatly in the next few years.
· Even those AIDS patients with extensive health care coverage may
be impoverished by the loss of employment and the costs of routine daily
care. Although the majority of these patients are ambulatory during all but
the most acute phases of the disease, few of them can sustain gainful
employment, even during periods when their disease is relatively quies-
cent. Though no quantitative data are available on the extent of workdays
lost, Scitovsky et al. (1986) have suggested that AIDS sufferers can work
no more than 40 percent per year. Hardy et al. (1986) have suggested that
this figure is only 14 percent, based on a review of other studies.
Therefore, a proper analysis of insurance for AIDS victims also needs to
consider disability, wage replacement, and possibly death benefits as well
as medical care coverage.
AIDS and other HIV-related conditions present multiple financial
burdens to society, the cost of medical care constituting only one
component of these, albeit a large one. Many of the issues that arise in
connection with financing AIDS care are not unique to it, but reflect
problems inherent in the present system for financing care. These
problems are posed at a time when federal and state governments and
others are grappling with their respective responsibilities and the best
mechanisms for meeting the health care costs of the poor, the uninsured,
and the underinsured. This is also a time when there is considerable
pressure to contain health care costs (and the costs such as employee
fringe benefits that depend on them). However, in the opinion of the
committee, there is one aspect of the financing of care for AIDS that
deserves special consideration. This relates to the way in which the
concerns of employers or the providers of insurance might affect the
motivation of individuals in groups at risk of infection to step forward and
participate in efforts to stem the spread of infection.
So long as the claims of insured AIDS patients constitute a relatively
small fraction of the total claims of all insured people in employment-
based plans, there will not be major increases in the costs of such plans.
However, increases in the proportion of AIDS cases among insurance
claims will cause increases in costs. Insurers will charge higher premiums
to employers, and employers will have an incentive to exclude infected or
high-risk persons from employment in an attempt to contain their contri-
butions to the costs of benefits packages.
When insurance companies are writing individual or small-group poli
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CARE OF PERSONS INFECTED WITH HIV 169
cies, they have an actuarial incentive to identify and possibly exclude
persons who are at risk of HIV infection or who are already seropositive,
because these people pose the threat of potentially very large expendi-
tures. A few states or jurisdictions have enacted special antidiscrimina-
tion laws that bar insurance companies from denying insurance to persons
who are at high risk or seropositive for HIV infection (Intergovernmental
Health Policy Project, 19861. Some of these laws also bar required testing
for HIV infection and questions asking whether an insurance applicant
has been tested. At an earlier time, when the data on the disease
suggested that very few seropositive persons would experience the severe
form of the disease, these provisions seemed to many legislative bodies to
be appropriate. In more recent months, data have indicated a consider-
ably higher conversion to serious disease. Under these conditions the use
of screening devices (such as the HIV antibody test) for the underwriting
process may be more reasonable. Other tests are used routinely as tools
in assessing an individual's risk of disease.
Incentives to identify and exclude high-risk persons are not eliminated
by laws that prevent discrimination in employment or insurance cover-
age. Even if screening tests specific for HIV infection were barred, and
even if discrimination on the basis of sexual orientation were illegal,
employers and insurers would still have strong incentives to screen
persons by any imperfect means at their disposal. Anecdotal evidence
suggests that surrogate blood tests, histories of sexually transmitted
disease, and other substitute measures have been considered or may
already be in use. These surrogate measures invariably have lower
predictive value than antibody testing and in some cases very little, if any,
predictive value at all. If any test is used, it should be the most predictive.
However, the committee recommends that final decisions on the permis-
sibility of using screening devices in underwriting be postponed pending
the outcome of deliberations regarding the establishment of a mechanism
to ensure coverage of health care costs of HIV-infected individuals, as
discussed below.
The general threat of discrimination in employment or insurance to
provide for the costs of medical care may deter individuals in high-risk
groups from being tested to ascertain their antibody status. Since knowl-
edge of antibody status may prompt some individuals to adopt healthier
behavior, social disincentives to testing should be minimized.
As noted earlier in this chapter, the committee believes that society has
an obligation to ensure that all sick individuals receive adequate medical
care. An implication of this belief is that all individuals should have access
to some form of "insurance" (public or private) that will finance their
care, if needed. Those who can afford it should pay premiums so that they
are insured, but those who cannot have a right to expect public provision.
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170 CONFRONTING AIDS
However, coverage for the cost of care for AIDS and other HIV-related
conditions may be subject to misperceptions. If they become ill, IV drug
users and homosexual men would in effect be entitled to benefits, and the
facile interpretation that other insured persons or society at large would
be paying for a "chosen" life-style needs to be directly confronted.
"Insurance" coverage for AIDS means covering the costs of a disease
and not support of a life-style, just as coverage for the treatment of lung
cancer does not support the life-style of smokers. Increased awareness
that AIDS is spreading in the sexually active heterosexual population will
reduce this problem of misperception somewhat. However, the real
question is whether differences of opinion over the morality or advisabil-
ity of certain behavior should affect a sick person's access to health care.
The committee believes that perceptions as to a person's culpability for
an illness are irrelevant to the question of access to medical care and the
opportunity to make provision for covering its costs. (This opinion is
consistent with the position of the President's Commission for the
Study of Ethical Problems in Medicine and Biomedical and Behavioral
Research (1983b) as discussed in the report Securing Access to Health
Care.)
.
If some "insurance" mechanism were available as a last resort
whereby any individuals (even if at risk of infection, seropositive, or
already ill) could make provision or otherwise be assured that their future
health care costs would be covered, then much of the tension between the
interests of insurers and individuals at risk of infection would be elimi-
nated.
The range of problems associated with AIDS and HIV-related care
financing illustrate shortcomings in the general health care financing
system. Thus, it is desirable that provisions for ensuring coverage of
AIDS care costs be encompassed in a scheme that resolves general
problems in financing rather than be AIDS-specific.
There are a number of mechanisms available to deal with the problems
faced by potential patients and insurers whereby last-resort coverage
might be provided. These include federal catastrophic health insurance or
state pools for medically high-risk individuals. The committee did not
have the time or resources to deliberate on the relative benefits of these
or other approaches (or on the question of whether a categorical scheme,
analogous to Medicare ESRD coverage, just for HIV-related conditions
was justified in case the establishment of other general mechanisms
proved to be too slow or not entirely satisfactory). Planning for financing
of care for AIDS and other HIV-related conditions must begin immedi-
ately, because creative new approaches may be needed and putting such
schemes into place takes considerable time, as illustrated by the length of
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CARE OF PERSONS INFECTED WITH HIV 171
time taken to resolve questions with respect to financing of care for
end-stage renal disease a decade (Rettig, 1980~.
Policy Issues
A variety of eligibility questions would need to be answered in the
process of developing any scheme of the type discussed above. These
include questions involving the criteria for allowing individuals to partic-
ipate in the scheme, the HIV-related (or other) conditions that would be
covered, and the grounds for revision of eligibility criteria. Some experi-
ence with the categorical ESRD coverage indicates that the rapid expan-
sion of total ESRD costs during the 1970s and 1980s resulted not from
changes in the incidence of renal disease but from changes in the
standards of eligibility for dialysis (Eggers et al., 19841.
An issue in the design of health insurance schemes- both private and
public is the question of what methods of providing benefits impart the
most appropriate incentives to both providers and patients. If treatment
of AIDS in settings outside of acute care hospitals generally proves to be
more cost-effective than longer hospitalizations, then coverage of treat-
ment in these settings is desirable and lack of coverage provides an
inappropriate incentive to use hospitals, which would raise total costs. If
reimbursements for care for AIDS and other HIV-related conditions fall
substantially below the actual cost of care, then hospitals and other
facilities may have incentives to turn away AIDS patients. Another aspect
of this issue is the way the scheme affects incentives to seek care. If
medical treatment or knowledge of cofactors were to improve substan-
tially, early incentives to seek care could be critical.
Incentives to seek care are relevant not only to treatment of HIV
infection but also to its prevention. In this regard, it is critical to examine
ways in which the current system or any new system of health care
financing might be modified to help persons at risk avoid infection. Of
special concern is funding for the treatment of IV drug use, which is likely
to be effective in prevention of HIV transmission. Incentives to be tested
for HIV antibodies might help slow the spread of infection when coupled
with counseling. Also, outpatient clinics for the care of sexually trans-
mitted diseases, for example, may be effective sites for education about
HIV transmission. If so, coverage for such services in any new scheme
would be critical.
Another issue in the financing of care for AIDS and other HIV-related
conditions is the question of balance between public and private cover-
age. A sizable proportion of AIDS patients appears to have conventional
private health insurance through employment-based groups, and this
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172 CONFRONTING AIDS
seems likely to continue, as is appropriate. (It is not the purpose of new
mechanisms to transfer the costs of AIDS patients from existing private
insurance schemes.) With 40 percent or more of AIDS patients currently
covered under Medicaid, it appears likely that future financing of AIDS
care will necessarily involve substantial public programs and funds. The
scheme could be designed to shift the current balance in either direction
or to maintain the status quo; the relative merits of these shifts need to be
considered.
The issue of equity also needs consideration. Although HIV infection
and AIDS are spreading throughout the United States, the major burden
of cases is likely to be in urban centers and in particular states for the near
future. To what extent the financial burden should be spread locally,
within states, regionally, or nationally needs to be addressed.
Conclusions and Recommendations
In its review the committee found a number of causes for concern with
the present financing of care for patients with AIDS and HIV-related
conditions. Some of these reflect generic problems with health care
financing. There also exists the potential for high-risk individuals to be
apprehensive about discrimination in employment or in access to health
care insurance, which could adversely affect efforts to stem the spread of
HIV infection.
The committee believes that society has an ethical obligation to ensure
that all individuals receive adequate medical care. This implies the
opportunity to make provision for or otherwise be assured that their
future health care costs will be covered. Those who can afford it should
pay premiums so that they are insured, but those who cannot have a right
to expect public provision.
· The committee recommends that the commission on financing of
health care recommended in the PHS Plan for the Prevention and Control
of AIDS and the AIDS Virus (Appendix G) take as its first order of
business the evaluation of ways to ensure that all persons at risk of
infection, seropositive, or already ill could make provision for or other-
wise be assured that their potential health care costs will be covered. It
suggests that the options considered include state pools for medically
high-risk individuals and federal catastrophic health insurance. (These
would supplement existing private and public insurance schemes.)
Private and public insurance coverage should be modified to provide
effective incentives for the appropriate treatment of HIV-related condi-
tions such as AIDS. To this end, more needs to be known about the most
cost-effective means of treating the various manifestations of the disease
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CARE OF PERSONS INFECTED WITH HIV 173
and about shortcomings in the present systems in relation to the optimal
approaches to care.
· Carefully designed studies should be made of medical expenditures
for AIDS patients under different models of care. Similar studies of
persons with other manifestations of HIV infection, such as ARC, are
also required. Managed approaches to care should be included in these
evaluations.
· Current financing mechanisms should be immediately and periodi
cally examined to determine the extent to which they meet the costs of
care for AIDS and ARC patients and their edect on incentives to provide
care. Areas for attention should include the adequacy of hospital reim-
bursements by Medicaid for AIDS patient care; the appropriateness of
eligibility periods; reimbursement for out-of-hospital care, hospice care,
and home care; the use of diagnosis-related groups in reimbursement
decisions; and coverage for home care not provided by nursing profes-
sionals.
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Representative terms from entire chapter:
hiv infection
