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OCR for page 93
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 care—trauma 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
OCR for page 116
~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.
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Representative terms from entire chapter:
hiv infection
