HIV Testing Policy and Serious Mental Illness
James Walkup, PhD, James Satriano,
PhD, Danielle Barry, MS, Pablo Sadler, MD, MPH and Francine
2002, Vol 92, No. 12 | American Journal of Public Health
James Walkup is with the
Institute for Health, Health Care Policy and Aging Research
and Danielle Barry is with the Department of Psychology,
Rutgers University, New Brunswick, NJ. James Satriano is with
the New York State Office of Mental Health, New York, NY.
Pablo Sadler and Francine Cournos are with the Department of
Psychiatry, College of Physicians and Surgeons, Columbia
University, New York, NY.
Correspondence: Requests for
reprints should be sent to James Walkup, PhD, Institute for
Health, Health Care Policy and Aging Research, 30 College Ave,
New Brunswick, NJ 08903 (e-mail: firstname.lastname@example.org).
Objectives. Using opinion data from experts, we
examined the context of the argument for mandatory
testing of psychiatric patients.
Methods. Vignettes were distributed to experts on
HIV and mental illness. Respondents were asked to
provide appropriateness ratings for different
hypothetical clinical decisions regarding HIV management.
Results. Respondents were reluctant to impose
testing without informed consent in most
circumstances. The presence of risk factors or
danger to another increased appropriateness ratings modestly.
Conclusions. Despite experts’ tendency to
emphasize individual rights, public reluctance to
mandate testing is unlikely to extend to people
with serious mental illness. No argument for mandatory
testing can be persuasive if improved voluntary testing can
achieve adequate detection rates. Voluntary testing protocols
should be studied to determine which successfully
identify infected individuals.
Interest in the now well-documented spread of HIV among those
with serious mental illness was largely confined to
mental health professionals until 2 events in the
late 1990s called attention to this issue in
broader, policy-related discussions. The first was
the 1997 passage by the New Jersey legislature of a bill that
required all patients admitted to state psychiatric hospitals
to be tested for HIV, even if they did not consent.
Had a last-minute veto by a moderate Republican governor
not forced legislators to include a requirement
that patients give informed consent,
HIV testing would have been mandatory for all new
admissions throughout the state psychiatric hospital system,
setting a precedent for other states. The second event was
the highly publicized arrest, in the fall of 1997, of Nushawn
Williams, an HIV-positive man who was believed to have
infected scores of women in Chautauqua County, New
York, and New York City. Shortly after Williams was
arrested on a drug charge, reports indicated that
he had previously been diagnosed with schizophrenia.
A New York Post columnist, concerned that a claim of
mental disability might be used to evade legal accountability,
complained, in an inflammatory lead, that "It’s
crazy to put this vulture in a cuckoo’s
These 2 events highlight how public attention to the spread
of HIV in a population not typically considered in this
context can challenge previously established public
attitudes and public policy. The working policy
consensus developed in the 1980s carried an
implicit image of AIDS patients, their motivations, and
their likely responses to specific policies. Mandatory HIV
testing was initially rejected as unworkable,
politically insupportable, and ethically
problematic. As changes in this implicit image begin
to reflect new epidemiologic and therapeutic realities, the
implications of older policies are not always clear. It remains
to be seen whether HIV testing may be mandated for some people
with serious mental illness. We examine the debate on this
Definitions of serious mental illness vary,
but they typically incorporate information on
diagnosis, disability, and illness duration. The
category usually includes many with schizophrenia and
bipolar disorder, as well as other conditions, such as
recurrent major depression and personality
disorders, when these produce high levels of
While many of those falling into this category have
received inpatient psychiatric care at some point,
all but the most severely ill spend most of their time in
the community, where they rely on outpatient settings for
services. Since the New Jersey legislation targeted
inpatient admissions—and, as a practical matter,
because blood is routinely drawn on admission, and
mandatory testing seems more likely to be adopted
in inpatient rather than outpatient settings—we primarily
focus on hospitalized patients, mentioning outpatient care
only when it seems relevant.
Public rhetoric over mandatory testing has had an alarmist
cast, but the ethical issues raised by the spread
of HIV among the seriously mentally ill are by no
means simple. They have been debated within the
profession for over a decade.
Without an effective treatment to offer in the
first years of the epidemic, some experts felt that
the benefits of early detection and treatment were
insufficient to justify the intrusiveness of testing and the
distress it caused.
Counseling and confidentiality protections in the
mental health system were thought to be so inadequate that
knowledge of one’s HIV status was arguably more burdensome
Nevertheless, advocates for mandatory testing argued
that knowledge of a patient’s HIV status was crucial for
differential diagnosis of some psychiatric complaints,
and that patients with severe mental illness were often
unaware of their HIV risk and serostatus and thus
were unlikely to seek voluntary testing.
It was also proposed that an exception to the AIDS
confidentiality rule be made for psychiatric patients deemed
Recent changes in the logic and prevailing discourse of
prevention provide an important context for our
examination of this issue. One early and
influential prevention paradigm focused efforts on
modifying the behavior of the entire population. Any less
universal focus (on, for example, "risk
groups") was viewed as undesirable because it
was liable to undermine the message that each
individual was responsible for his or her own protection.
In the words of a popular expression of the period,
"AIDS doesn’t discriminate." Targeted
prevention, it was held, might also foster an
"us–them" attitude by the public, weakening an
already fragile social solidarity.
The case for targeted prevention is no longer viewed with
such suspicion. In 1996, between 37% and 64% of US
adults with HIV were not receiving appropriate
care, either because they were unaware of infection
or because they had not accessed services.
Yet a review of applications for Centers for Disease
Control and Prevention (CDC) prevention funds found
that most did not name people with HIV as a
priority population for prevention.
In this context, efforts to decrease risk behavior by
people with HIV/AIDS have acquired increased
This new approach emphasizes the need to increase the
number of people who know their serostatus among
those already infected, who can then be brought
into care and recruited as partners in prevention.
This new framework has been put into action with the
CDC’s SAFE (Serostatus Approach to Fighting the Epidemic)
and its "Know Now" media campaign to encourage testing.
Today, early detection of HIV infection is widely
New testing procedures may reduce the stress and
inconvenience of HIV testing, since it is now
possible to use urine or saliva rather than blood,
and provide initial information on test results almost
immediately (although it is still necessary to run a Western
blot test to confirm a positive test, which takes time).
The promise of life-extending treatments can now be
weighed against the adversities of testing. Given
the evidence that, among those with serious mental
illness, behaviors that increase the risk of HIV
transmission are comparatively common,
documented rates of HIV infection are elevated, and HIV
testing practices are inadequate, some action is
warranted to increase rates of HIV testing. In this
study, we discuss ethical and policy issues raised
by the use of mandatory testing to increase testing
rates, examining testing policies in the context of the
historical and contemporary social context in which they have
PRINCIPLES AND POLICYMAKING
Various abstract ethical concepts have played a role in US
AIDS policy, but, as Bayer describes in Private
Acts, Social Consequences, the balancing of
these principles was influenced by cultural, political,
and social forces as well.
During the 1980s, mainstream AIDS policy coalesced
around a "voluntarist consensus" forged from
a combination of principled and practical considerations.
As a matter of principle, the tradition of civil liberty
runs deep in the United States. Numerous
institutions and practices express the high regard
held for values such as noninterference and
autonomy, which arise from respect for individual privacy.
Compulsory efforts to identify infected individuals were
As a practical matter, because most acts of viral transmission
take place in private settings, state surveillance and
control are exceedingly difficult. Rather than attempt to
police private acts, require HIV testing, or quarantine
the infected, the voluntarist view argued that
policy should safeguard confidentiality, strengthen
antidiscrimination laws, and rely on education and
persuasion to promote behavior change and encourage testing.
The generally moderate approach and comparatively strict
confidentiality regulations in effect until recently in
New York and New Jersey largely embodied voluntarist
principles, but they were created with little
consideration of HIV in special populations, such
as those with serious mental illness.
PSYCHIATRIC ILLNESS AND HIV
Medical care for patients with the most serious psychiatric
conditions can be challenging and has historically
suffered from neglect, with the result that many
treatable conditions go unrecognized, leading to
elevated mortality rates.
In the 1980s, psychiatric attention was initially
focused on helping infected patients deal with the
medical and psychiatric accompaniments of infection
and managing the various medical and legal dilemmas raised.
The risk of HIV infection among people with serious mental
illness was not immediately apparent.
More than 40 cases of HIV disease had been identified in
New York’s state psychiatric hospital system by
but sustained interest in infection rates among
those with serious mental illness arose
comparatively recently. Published estimates based
on studies in psychiatric settings suggest that, at least
in high-prevalence areas like New York City where most
data have been collected, the rate of HIV infection
among people with severe mental illness ranges from
4.0% to 22.9%.
One New York City unit for patients with combined
substance abuse and psychiatric illness reported an
infection rate of 23%.
Using figures from published studies, city officials in
New York City estimated in 1996 that between 1130
and 1189 known HIV-positive individuals with
serious mental illness were being served in the
mental health system.
Studies conducted in psychiatric settings in other areas
reported lower, but still troubling, rates.
A recent study that included outpatients and
inpatients from a mixture of high-prevalence urban
areas, smaller metropolitan areas, and rural settings found
a lower infection rate (3.1%) but noted that this rate was
still 8 times that of the general population.
Few seroprevalence data exist on large populations. Among
HIV-positive Medicaid recipients in New Jersey,
5.7% are diagnosed with schizophrenia and 6.8% with
major affective disorder.
Blank and colleagues compared Medicaid and welfare
recipients with and without serious mental illness
and found that, after they controlled for age, sex,
race, and time on welfare, schizophrenia and affective disorder
significantly increased the odds of an individual being HIV
On the basis of data from emergency room visits and
hospital discharges in South Carolina, patients diagnosed
with a mental illness are 1.44 times more likely to have
HIV/AIDS than those not so diagnosed.
Inasmuch as Medicaid claims and hospital discharges
capture only cases in the treatment system, these
figures do not count patients who may have a major psychiatric
illness but do not receive treatments that produce
claims or discharge records.
Ironically, despite the high prevalence of HIV in New York
State, the evidence leaves little doubt that
statewide efforts to promote testing for
psychiatric patients have been grossly inadequate. Using
data collected from visits to half the general hospital psychiatric
units in the state, Walkup and colleagues found that
70% of the units urged testing for only "a few" or
"almost none" of their patients.
A 1995 statewide survey of licensed outpatient
mental health facilities in New York State found that
fewer than half the sites responding had staff trained to
provide HIV counseling and testing.
A similar survey in 1997 found that fewer than one
third of sites reported that HIV risk assessment
Two decades into the epidemic, data collected from
mental health agencies between March 2000 and
January 2001 indicate that, despite gains made from focused
efforts to increase HIV/AIDS preparedness, significant
gaps in service remain.
RISK ASSESSMENT AND HIV
Awareness of infection is a practical precondition to
treatment in almost all circumstances. Grassi has
warned that many HIV-positive psychiatric patients
are unaware of their status.
The limited data available confirm this fear.
Even in New York State, where risk screening
interviews are mandated, staff fail to identify as
many as two thirds to three quarters of HIV-infected patients
in some settings.
Some blame can be assigned to a "passive"
approach to HIV testing derived from a diagnostic test
paradigm, in which "ordering the test is appropriate only
if test results are positive at some regular
In many psychiatric settings, HIV testing is provided
only when it is considered appropriate for an
individual patient, either when it has been
requested by the patient or urged by staff on the
basis of information about risk behavior.
Routine clinical judgments about when to order testing are
highly fallible. As in other medical settings,
information on high-risk behavior is frequently
missed by psychiatric staff
and commonly goes unrecorded in the charts of
Routine intake questions may not provide enough
information to alert clinicians to suggest testing.
Only about 1% of psychiatric patients in a New York
City study reported intravenous drug use in the
past 6 months, yet detailed questioning found that 1
in 5 had used intravenous drugs since the start of the US
HIV epidemic in 1978.
A study of inpatients with schizophrenia in 4 New
York City hospitals found that fewer than 1 in 5 had recently
been tested for HIV; even the majority of injection drug
users had not recently been tested.
Inaccurate stereotypes about the mentally ill may cause
staff to underestimate risk. Even experienced
clinicians may sometimes mistakenly view people
with serious mental illness as asexual. While it is
true that many seriously mentally ill people report having
sex infrequently, studies indicate that the sexual intercourse
that does occur is often unprotected, involves multiple
partners, or both.
Marriage and long-term relationships are comparatively rare.
Many of those who are sexually active meet partners in
public places, such as bars or on the street,
trade sex for material gain, or report a history of
sexual contact with an injection drug–using
High rates of sexual victimization are reported as
Screening for risk factors may also suffer because
professionals are reluctant to bring up HIV with
psychiatric patients, often out of well-meaning
concern for the patient’s welfare. They may
overestimate the anxiety caused by taking a sexual history
or fear that discussing emotionally charged issues, such
as sexual behavior and HIV, may worsen psychiatric symptoms.
They may assume that patients’ sexual histories are
unreliable and see little point in obtaining them.
Yet there is evidence that patients give reliable
information and that many welcome the opportunity
to discuss sexual issues.
Newly admitted inpatients are often considered too
disturbed for testing. However, workers also fear
that, as discharge approaches, a positive HIV test
may increase a patient’s length of stay or create
logistical problems with posttest notification and
counseling if the test result arrives after discharge. In
a time when most inpatient stays are short, the period
during which testing is considered acceptable
becomes short indeed. Commentators have noted that
the current failure to detect HIV relieves
overburdened care systems of a difficult, potentially costly,
Even when everyone involved is highly motivated to
improve screening, changes that are likely to increase costs
are typically difficult to implement.
In designing a survey to aid in developing treatment
guidelines for patients with comorbid HIV and
schizophrenia, we included some questions on the
topic of mandatory HIV testing. We report responses
to selected items in order to shed light on expert opinion
regarding this controversial issue.
Our approach was to solicit opinions from nationally known
experts. We developed our list in several ways. We
recruited most of our experts from the list of
participants who had attended a 1996 consensus
conference on HIV and serious mental illness sponsored
by the National Institute of Mental Health. Subjects were
initially called by telephone. When someone could not
participate, we asked him or her to nominate a
replacement. In a few cases, we also sought out
experts known to us through their publications. Of
the 28 subjects who agreed to participate, 22 completed and
returned a survey. Over three quarters (77%) were
physicians (mainly psychiatrists). Most had direct
clinical experience with HIV/AIDS (63%) or with
serious mental illness (68%). The average length of
time spent working with patients with HIV/AIDS was
7.5 years. The nonclinicians in the group either conducted
research or worked on policy issues in the area.
We developed our instrument in several phases. Interviews were
conducted with clinicians and administrators whose jobs
required them to confront clinical and ethical
dilemmas associated with the spread of HIV among
people with serious mental illness. On the basis of
the interview data and our experience, we chose a
series of clinical dilemmas that a clinician working with
clients with serious mental illness might face. The
questions concerned a hypothetical young man with
schizophrenia (Mr A). Respondents were told he
lives in a community residence, is generally stable
when he takes his medication regularly, but has an
occasional acute exacerbation of his psychiatric condition.
Questions were reviewed for realism and appropriateness
by other clinicians and were modified on the basis
of their comments. Sample scenarios are included in
the box on this page.
Sample Scenarios From
Questionnaire Asking Experts on HIV and Mental
Illness to Rate Appropriateness of Different
Hypothetical Clinical Decisions
Mr A is a young man with schizophrenia. Between periods
of acute exacerbation, he is generally stable and has
been maintained with a low dose of a high-potency
antipsychotic (e.g., haloperiodol, 5 mg PO,
QD). He lives in a community residence and is
seen monthly for medication checks and case management.
Would you urge Mr A to undergo voluntary
HIV testing with informed consent if he
denied HIV risk factors and he has been psychiatrically
stable for a long period and—
- resides in a community
with a high rate of infection?
- resides in a community
with a low rate of infection?
Would you be prepared to test Mr A for HIV
without his consent if he became grossly psychotic, was
hospitalized, lacked the competence to judge
health care needs, and—
- had no known history of
- and had no
medical condition noted on physical examination?
- and had a
positive VDRL test?
(If Mr A is HIV positive) Now suppose that
Mr A has not revealed his diagnosis to other patients,
but during the hospital stay, he reports he had
unprotected sex with another patient, Ms B,
who confirms his account. Suppose, too, that
Mr A is sexually preoccupied and will not give assurance
that he will avoid sex while on the unit. Would
- isolate Mr
- put Mr A on one-to-one
- counsel Ms B that she
has been exposed to HIV?
- advise the patient
community of rule violation without
identifying Mr A and Ms B?
- reinforce rules
against sex on the unit?
Note. VDRL=Venereal Disease Research
Laboratory; PO=orally; QD=daily.
Individual questions proposed dilemmas regarding HIV
testing and confidentiality. 1) Questions asked
respondents to rate a clinical decision on a scale
from 1 ("extremely appropriate") to 9
("extremely inappropriate") or to mark an
"X" if they were unable to answer
because, for example, they lacked the necessary technical
knowledge. Following a format widely used in previous studies
of consensus judgments on clinical issues, choices rated 2
or 3 were labeled "usually inappropriate," those
rated 7 or 8 "usually appropriate," and
those rated 4, 5, or 6 "equivocal."
2) Unreadable and skipped responses were not counted;
the average number of usable responses was 20.6.
Experts not included in the original sample were
asked to comment on the clinical and policy
significance of the findings.
Experts approached testing with caution but varied their views
on the basis of the presence of various indicators. Even
when they were told to imagine that Mr A lived in a
community with a high rate of infection, the mean
appropriateness rating for recommending voluntary
testing fell short of the "usually appropriate"
standard (mean = 5.67, SD = 2.35). To investigate
circumstances under which it might be thought
appropriate to test a patient without informed
consent, respondents were asked if they would be
prepared to test Mr A without his consent if he became grossly
psychotic and incompetent to judge his health care
needs. When Mr A had no known history of high-risk
behavior and no medical problems, the mean rating
indicated that forced testing was usually
inappropriate (mean = 2.5, SD = 1.73). Ratings rose into
the "equivocal" range when we added either a history
of high-risk behavior (mean = 5.1, SD = 2.6) or the
presence of a non-HIV sexually transmitted disease
(mean = 5.35, SD = 3.08). When both factors were
added to the vignette, mean ratings reached the
high end of the "equivocal" range (mean = 6.19, SD =
Respondents were given a space to describe any other
circumstances in which they might support mandatory
testing. One wrote, "Perhaps if the person had
a high probability of having HIV disease clinically, lacked
capacity to understand actions that could lead to HIV transmission,
[and] regularly has these behaviors. But this is a
complex civil rights vs public health issue." A second
wrote, "[When] violent acts on the unit [cause]
harm [and] blood injury results to other
patients." A third wrote that mandatory testing
would be appropriate if Mr A sexually assaulted another patient,
in which case prompt combination therapy could be given to
the exposed rape victim, but raised concerns about treating
Mr A himself since he might not comply with a
complicated oral medication regimen, thus
increasing the risk of developing a resistant viral
In the event that Mr A was tested and received a positive
result, a series of questions inquired about the
circumstances under which it would be appropriate
to disclose that Mr A was HIV positive without his
consent. Disclosure to emergency medical services
personnel treating Mr A received a mean rating of 4.62 (SD
= 3.25), and disclosure to a nonphysician primary therapist
or case manager received a mean rating of 4.52 (SD =
3.2). Disclosure to staff at a residence
considering Mr A for admission was rated as less
appropriate (mean = 3.33, SD = 2.69) than disclosure to
a primary therapist.
Respondents gave disclosure to a known sex partner a
somewhat higher appropriateness rating of 5.95 (SD
= 2.58). Disclosure to family members without
consent was considered inappropriate, with the
degree of inappropriateness depending on whether Mr A
lived with his family. The mean score was 2.33 (SD = 1.74)
if he resided with his family and 1.71 (SD = 1.01) if no
mention was made of living with his family.
Some of the main challenges to the voluntarist approach to
testing among individuals with serious mental
illness concern the risk that they might infect
others—a topic given special urgency in clinical
settings where physicians have responsibility for the
welfare of other patients. The questionnaire presented a scenario
in which Mr A is hospitalized and has not revealed his
HIV status to other patients. He reports to a counselor that
he has already had unprotected sex with a another patient,
Ms B, and refuses to give assurances that he will not
have sex with other patients while on the unit.
Several possible responses to this situation are
presented. The possibility of isolating Mr A from
other patients received a mean rating of 4.21 (SD =
2.68), while the mean rating for one-to-one observation was
7.32 (SD = 1.53). Notifying Ms B that Mr A is HIV
positive fell into the usually appropriate category
(mean = 7.53, SD = 1.93). The breach of
confidentiality was apparently justified by the individual
risk to Ms B. In contrast, notifying the entire patient community
of Mr A’s HIV status was rated as usually inappropriate
(mean = 3.11, SD = 2.45). An approach deemed more
appropriate, with a mean rating of 7.84 (SD =
2.22), was to advise the patient community of
high-risk behavior on the unit and to reinforce rules
against sex between patients.
Overall, our expert respondents showed little enthusiasm for
testing psychiatric patients without their consent.
Instead, they seem to approach testing primarily as
a clinical—not a policy—issue, varying their
ratings of appropriateness in response to changes
in clinical circumstances described in the
vignettes. Further research might identify the sources of
the attitudes found here. Do they derive primarily from
values associated with professional identity, or do
they draw on personal, political, and social
values? Future work might identify and analyze
differences between values expressed by these elite professional
opinion makers and administrators or direct care workers.
Also valuable would be evidence that could clarify how
stable these opinions are and what sorts of events or
considerations might prompt changes.
It is far from clear, however, what role the opinions of
mental health professionals will play in future
policy discussion. Policy changes can be initiated
in various quarters, some of which assign little
weight to professional opinion. We believe there
are several reasons to anticipate that the tenets of the voluntarist
consensus will be put under strain by the spread of
HIV among the seriously mentally ill.
First, the very tradition of civil liberty that provided a
foundation for the voluntarist consensus includes a
long tradition of allowing—indeed, sometimes
requiring—exceptional treatment of mentally disabled
persons. Civil procedures allow for involuntary commitment.
When someone is judged incompetent to make a treatment
decision, treatment can be provided over that
person’s objection, using the doctrines of
substituted judgment or best interests. In criminal
law, defenses of insanity or diminished capacity are
allowed. These judicial exceptions have generally been framed
as humanitarian, not discriminatory.
While not linked directly to the context of HIV, several
aspects of the current atmosphere may indirectly
increase the perception that creating exceptions
for people with mental illness is often necessary
and reasonable. Data from the 1996 General Social Survey
indicate that a very high proportion of the public supports
use of legal means to coerce people with schizophrenia
Recent acts of violence by persons with serious mental
illness have prompted some to conclude that protection of
public safety requires increased authority to restrict the
behavior of psychotic persons.
Second, as a practical matter, certain types of
surveillance and control are significantly easier
to administer with psychiatric patients than with
the general population. Most major psychiatric illnesses
require medication, and many people with serious mental illness
have trouble maintaining employment and finding safe, affordable
For these reasons, many people with serious mental
illness have regular contact with public mental health
and social service workers, who are socially authorized to
inquire about private matters (e.g., sexual activity, drug
use) and seek to influence behavior. These mental health
and social welfare contacts provide a ready
infrastructure for testing, particularly since new
HIV testing procedures can be easily implemented by
individuals without specific medical training.
While it is unlikely anyone would publicly say that the
practical ease of implementation counts in favor of
mandatory HIV testing, the inability of opponents
to cite practical difficulty as a reason to oppose
mandatory testing would likely influence the outcome
of any policy discussion.
The circumstances of people with serious mental illness can
be compared with those of another group considered in
the debate over mandatory testing, pregnant women.
With very few exceptions, these women come into
contact with the medical care system for a
delivery. New York State now requires that newborn infants
be tested for HIV. Had most pregnant women avoided
contact with medical care for delivery,
implementation of the program would probably have
Before implementation, opponents voiced the fear that the
prospect of newborn HIV testing might make some
women reluctant to seek prenatal or obstetric
care—since, in effect, the test establishes the
mother’s serostatus—thus producing an
unintended outcome that undermined public health.
Interestingly, the limited evidence available
indicates that mandatory testing of newborns did
not have the feared effect on health care.
If access to psychiatric care is made conditional on HIV
testing, opponents will certainly object that it
may lead to avoidance of care. Given that the
newborn testing program does not seem to have led
to high levels of avoidance of care, and that there have
so far been no highly visible negative outcomes associated
with the program, less weight may be given to concern
about avoidance of care by psychiatric patients.
Third, comparatively limited political opposition is likely
to result from adoption of an exception-making strategy
for psychiatric patients. Despite changes in
attitudes, serious psychiatric disability remains
People with serious mental illness rarely have
effective informal or institutional ties to the
legal and political resources needed to influence
testing policy. Since psychiatric advocacy groups have
so far paid comparatively little attention to HIV, and since
AIDS advocacy groups have paid comparatively little attention
to people with psychiatric disabilities, there are fewer
opportunities to lobby legislators, influence
provider organizations, or take part in class
Fourth, efforts to retain pure voluntarism have often
relied on versions of the
camel’s-nose-in-the-tent argument. They warned
that a limit on the rights of pregnant women, for example,
would eventually open the door to limitations on the rights
of other groups.
But these arguments may be difficult to apply to
HIV testing for people with serious mental illness, since
the arguments probably overstate the objective risk entailed
by making an exception for psychiatric patients. They
almost certainly presume a higher level of social
solidarity concerning this issue than now exists.
Testing has been required for many groups, such as
newborns, prisoners, and those in the armed services,
without widespread protest. It is difficult to imagine the
public fearing that mandatory testing of psychiatric patients
would be a harbinger of more widespread mandatory
The current perception of psychiatry can be contrasted with
its position in the 1980s, when there were several
concrete events that could reasonably have been
interpreted as efforts to use psychiatric authority
to create a back door to quarantine.
For example, an Orange County, California, task force
was set up to respond to risky behavior by persons
with HIV infection and required hospitalization for
several patients whose behavior seemed to have been
associated with severe psychiatric illness.
Other actions represented a more unambiguous effort to
stretch traditional psychiatric authority to cover
situations in which behavioral control was desired
but recognizable psychiatric disorder played little
role. Psychiatrist Paul Applebaum agreed with the
then-current American Psychiatric Association guidelines in
questioning whether psychiatric facilities ought to be used
for the detention of HIV-infected patients, but he
argued that an HIV-infected person’s
unwillingness to desist from risky behavior could
constitute legitimate grounds for involuntary confinement
to a psychiatric facility.
In a case cited by Bayer,
a probate judge in Alabama relied on the authority of
the state’s mental health law to commit a male
patient to a state psychiatric hospital to control
HIV transmission–related behavior. In another
instance, a Florida judge, responding to a petition by
the state’s Department of Health and Rehabilitative Services,
ordered an adolescent confined to a psychiatric ward as
a threat to public health. Bayer notes the unusually explicit
link between social control and a psychiatric
conceptualization of recalcitrant risky behavior
found in a similar approach taken by Indiana, which
public health officials characterized as
These efforts to extend the purview of psychiatry arose not
primarily from mainstream psychiatry but from public
officials who wanted to find alternatives to
criminal prosecution or explicit quarantine.
Indeed, the epidemic spread during a period when most
psychiatric leaders thought psychiatry needed to narrow its
mission, focusing on the diagnosis and treatment of mental
disorders and rejecting as "nonmedical"
broader social roles proposed for the profession.
In the years since AIDS was identified, openly gay
psychiatrists have occupied leadership positions in
defining appropriate roles for psychiatry, lobbied for
increased support for service provision, and worked
to forge alliances between psychiatry and
community-based agencies. More recently, concern
over psychiatric coercion has abated, and there is little
reason to believe that opposition to this social control
function of psychiatry could now be mobilized.
Finally, an argument can be made that a pure voluntarist
position undervalues the current benefits to
individuals and to public health. Early detection
of HIV can sometimes function as a substantial prevention
intervention, according to a meta-analysis of the effects
of HIV testing on risk behavior.
Combination antiretroviral treatments can now
reduce viral load and effectively extend periods of
healthy living for many patients.
An important ethical issue is the probable scope of
treatment-related benefits that may come from
testing. If only a few patients with serious mental
illness ultimately benefit from the new highly
active antiretroviral treatments (HAART), then the loss of
autonomy by a larger group is more difficult to justify. There
are indeed grounds for concern that many patients with serious
mental illness may not be in a position to benefit. In
an August 1998 survey of infectious disease physicians who
treat patients with HIV/AIDS, most said a patient’s
prior psychiatric hospitalization counts against
initiation of HAART.
This self-reported reluctance is echoed in a recent
finding that protease inhibitor therapy is
initiated later for patients with depression.
Caution in the use of HAART is reasonable, since suboptimal
adherence increases the probability of producing
resistant viral strains, harming the patient’s
prospects of successful treatment and increasing
the danger that these strains can be spread into
the uninfected population by patients who continue risky
behavior. Patients who lead socially disorganized lives may
not be equal to the demands of a complex medication regimen.
Yet recent data challenge stereotypes regarding the
adherence problems of people with mental illness.
One study found that, in a population of Medicaid
beneficiaries with HIV, patients with schizophrenia
had higher levels of antiviral adherence than other
patients with HIV—perhaps because they had previously
been integrated into the care system as a result of
their psychiatric illness.
While this example of superior adherence by people
with schizophrenia dates from the pre-HAART era,
recent data suggest that adherence to combination therapies
by patients with schizophrenia is not significantly
below that of other patients.
(The same study, however, indicates that patients
with recurrent major depression or bipolar disorder do
have adherence problems.) A San Francisco program has recently
reported good adherence to protease inhibitor therapy in
a substantial proportion of homeless and marginally
The strongest argument against mandatory testing proposals
for psychiatric patients is the clear evidence that
efforts to promote voluntary testing in mental
health settings have thus far been half-hearted and
insufficient. Unless and until more aggressive, systematic,
and well-funded efforts to promote voluntary testing are
made, we cannot know if acceptable levels of HIV detection
can be achieved while the patient’s freedom to choose
Specifically, 2 overlapping problems must be addressed.
First, the decision to test for HIV in this
population needs to follow a different logic. The
diagnostic approach characteristic of clinical
medicine needs to be replaced by the logic of screening tests
associated with public health. Rather than aiming to determine
whether a suspected illness is present or not, testing
should be motivated to identify as many cases as
possible, even when fewer positive results are
Second, clinicians tend to overvalue their own
judgment of who is and is not at risk. Asch and
colleagues found that clinicians treating tuberculosis patients
tended to perform HIV testing only for patients they perceived
to be at risk. We believe that, as among tuberculosis patients,
HIV is too prevalent among those with serious mental illness
for testing to be instigated by a process as fallible as
clinicians’ opinions on a case-by-case basis. Moreover,
when testing proceeds in this way, infection rates
cannot be properly interpreted, since they are
confounded by unknown selection factors.
We therefore propose that more strenuous promotion of
voluntary HIV testing programs such as those
proposed by the American Psychiatric Association
should be pursued by state mental health
authorities and hospital associations for all psychiatric
admissions and seriously mentally ill individuals
seeking or currently receiving outpatient services.
We know that many people with serious mental
illness currently accept voluntary testing when it
is offered to them.
Various protocols should be specified that rely on
existing behavioral methods such as motivational interviewing,
which can reasonably be expected to yield higher levels
of voluntary testing. Researchers can examine the
effectiveness by comparing cases identified by
these protocols with anonymous studies of discarded
blood samples at the same site. Results could help
determine which procedures produce the fewest missed cases
Advocates and civil libertarians may question whether
consent can be altogether voluntary in psychiatric
settings. Inpatients in particular are subjected to
a level of surveillance and enforced dependency
that usually makes it hard to resist pressure from caregivers,
however delicately applied. Nevertheless, we believe that,
so long as risks and benefits are understood by patients,
confidentiality is protected, counseling is provided,
and infected patients are guaranteed high-quality
HIV treatment, aggressive promotion of voluntary
testing is not only ethically acceptable, it is
ethically imperative. Certainly, a failure to detect one half
to two thirds of cases among inpatients is unacceptable and
justifies concern for the health of the public. Moreover,
on its face, inadequate detection is inconsistent with
the ethical obligation of health care professionals
to promote the physical well-being of their
Discussions of mandatory testing are prone to polarization
and the adoption of fixed positions. Nevertheless,
we believe that people who want to stress one or
another of the various values at stake can agree
that accurate information on the effectiveness of
voluntary protocols is necessary for any discussion of policy.
The absence of such data leaves citizens with mental
illness largely unprotected from policy initiatives
driven by tomorrow’s tabloid headlines, and
leaves the public all too ready to curtail patients’
rights with little concern that the sacrifices of
these vulnerable citizens yield proportional benefit.
This research was supported by a grant from the National
Institute of Mental Health (MH51015).
The authors gratefully acknowledge the contribution of Dr
Michelle Daniel, who made a vital contribution to
the construction of the survey and the successful
collection of responses, and thank the experts
surveyed for their time and effort.
J. Walkup, J. Satriano, P. Sadler, and F. Cournos contributed
to instrument design and data interpretation. J. Walkup,
J. Satriano, D. Barry, and F. Cournos contributed
to the writing and editing of the manuscript.
Accepted for publication February 5, 2002.
1. NJ governor vetoes mandatory testing of psychiatric
patients. AIDS Policy Law. 1997;12:8.
2. Leusner D. Senators, MD clash on HIV testing. Newark
Star Ledger. November 5, 1996:17, 20.
3. Leusner D. AIDS testing of mental patients debated. Newark
Star Ledger. January 10, 1997:26.
4. New Jersey to offer HIV tests to psychiatric patients. AIDS
Policy Law. 1998;13:10.
5. Dunleavy S. It’s crazy to put this vulture in a
cuckoo’s nest. New York Post. November 5, 1997:A1.
6. Goldman HH, Gattozzi A, Taube C. Defining and counting
the chronically mentally ill. Hosp Community Psychiatry.
7. Goldstrom I, Manderscheid R. The chronically mentally
ill: a descriptive analysis from the Uniform Client Data
Instrument. Community Support Serv J. 1982;2:4–9.
8. Barker P, Manderscheid G, Hendershot G, et al. Serious
mental illness and disability in the adult household
population: United States, 1989. Adv Data Vital Health
Stat. September 16, 1992;218.
9. Applebaum P. AIDS, psychiatry, and the Law. Hosp
Community Psychiatry. 1988;39:13–14.
10. Binder R. AIDS antibody tests on inpatient psychiatric
units. Am J Psychiatry. 1987;144:176–181.
11. Botello T, Weinberger L, Gross B. Proposed exceptions
to the AIDS confidentiality rule for psychiatric patients. J
Forensic Sci. 1990;35:653–660.
12. Cournos F, Horwath E. Confining AIDS patients [letter].
Hosp Community Psychiatry. 1988;39:671.
13. Cournos F, Bakalar N. Mandatory HIV testing for the
mentally ill [letter]. N Engl J Med. 1997;1014–1015.
14. Daniolos P, Holmes V. HIV public policy and psychiatry:
an examination of ethical issues and professional guidelines. Psychosomatics.
15. Haimowitz S. HIV and the mentally ill: an approach to
the legal issues. Hosp Community Psychiatry.
16. Hoffman BF, Arthurs K, Lunn S, Meyers L, Trimnell J,
Farcnik K. AIDS: clinical and ethical issues on a psychiatric
unit. Can J Psychiatry. 1989;34:847–852.
17. Ostrow D. HIV counseling and testing of psychiatric
patients: time to reexamine policy and practices. Gen Hosp
18. Perry S. Warning third parties at risk of AIDS: APA’s
policy is a barrier to treatment. Hosp Community
19. Zonan H. Warning third parties at risk of AIDS: APA’s
policy is a reasonable approach. Hosp Community Psychiatry.
20. Hellerstein D, Prager M. Assessing HIV risk in the
general hospital psychiatric clinic. Gen Hosp Psychiatry.
21. Strain J, Forstein M. "Yes" and
"no." Viewpoints-crossfire: is it time to require
mandatory HIV testing of all hospitalized inpatients? Psychiatr
News. March 1991:9–30.
22. Patton C. Fatal Advice: How Safe-Sex Education Went
Wrong. Durham, NC: Duke University Press; 1996.
23. Bozette SA, Berry SH, Duan N, et al., for the HIV Cost
and Services Utilization Study Consortium. The care of
HIV-infected adults in the United States. N Engl J Med.
24. Janssen RS, Holtgrave DR, Valdiserri RO, Shepherd M,
Gayle HD, De Cock KM. The serostatus approach to fighting the
HIV epidemic: prevention strategies for infected individuals. Am
J Public Health. 2001;91:1019–1024.
25. Hecht F. Approaches to HIV prevention among
seropositive patients in clinical care settings. Topics HIV
26. Marks G, Burris S, Peterman TA. Reducing sexual
transmission of HIV from those who know they are infected: the
need for personal and collective responsibility. AIDS.
27. Rotheram-Borus MJ, Lee MB, Murphy DA, et al. Efficacy
of a prevention intervention for youths living with HIV. Am
J Public Health. 2001;91:400–405.
28. Valdiserri RO, Holtgrave DR, West GR. Promoting early
HIV diagnosis and entry into care. AIDS.
29. American Psychiatric Association. Part A: background
information and treatment recommendations for patients with
HIV/AIDS. Am J Psychiatry. 2000;157(11 suppl):2–25.
30. Kassler WJ. Advances in HIV testing technology and
their potential impact on prevention. AIDS Educ Prev.
31. Carey M, Carey K, Kalichman S. Risk for human
immunodeficiency virus (HIV) infection among persons with
severe mental illness. Clin Psychol Rev.
32. Menon A, Pomeranz S. Substance use during sex and
unsafe sexual behaviors among acute psychiatric inpatients. Psychiatr
33. Bayer R. Private Acts, Social Consequences. New
York, NY: The Free Press; 1989.
34. Bayer R, Levine C, Wolf S. HIV antibody screening: an
ethical framework. JAMA. 1986;258:1768–1774.
35. Centers for Disease Control. Recommendations for
assisting in the prevention of perinatal transmission of human
T-lymphotropic virus type III/lymphadenopathyassociated virus
and acquired immunodeficiency syndrome. MMWR Morb Mortal
Wkly Rep. 1985;34:721–726, 731–732.
36. Institute of Medicine and National Academy of Sciences.
Confronting AIDS. Washington, DC: National Academy
37. Koop CE. Surgeon General’s Report on Acquired
Immune Deficiency Syndrome. Washington, DC: Public Health
38. Stroup TS, Gilmore HJ, Jarskog LF. Management of
medical illness in persons with schizophrenia. Psychiatr
39. Tsuang MT, Simpson JC. Mortality studies in psychiatry:
should they stop or proceed? Arch Gen Psychiatry.
40. Cournos F, Empfield M, Howardt E, et al. The management
of HIV infection in state psychiatric hospitals. Hosp
Community Psychiatry. 1989;40:153–157.
41. Cournos F, McKinnon K. HIV seroprevalence among people
with severe mental illness in the United States: a critical
review. Clin Psychol Rev. 1997;3:259–269.
42. Silberstein C, Galanter M, Marmor M, et al. HIV-1 among
inner city dually diagnosed inpatients. Am J Drug Alcohol
43. Health Systems Agency of New York City Inc. Qualitative
Service Gap Analysis: Mental Health Services for People Living
With HIV/AIDS. New York, NY: New York City Dept of Health
and the Mayor’s HIV Health and Human Services Planning
44. Rosenberg SD, Goodman LA, Osher FC, et al. Prevalence
of HIV, hepatitis B, and hepatitis C in people with severe
mental illness. Am J Public Health. 2001;91:31–37.
45. Walkup J, Crystal S, Sambamoorthi U. Schizophrenia and
major affective disorder among HIV-infected New Jersey
Medicaid Recipients. Am J Public Health.
46. Blank M, Mandell D, Aiken L, Hadley T. The
Co-Occurrence of HIV and Serious Mental Illness Among Medicaid
Recipients. Philadelphia: Center for Mental Health Policy
and Services Research, University of Pennsylvania; 2001.
Working Paper 0101.
47. Stoskopf C, Kim Y, Glover S. Dual diagnosis: HIV and
mental illness, a population-based study. Community Mental
Health J. 2001;37:469–479.
48. Walkup J, Satriano J, Hansell S, Olfson M. Practices
related to HIV risk assessment in general psychiatric units in
New York State. Psychiatr Serv. 1998;49:529–530.
49. Satriano J, Rothschild R, Steiner J, Oldman J. HIV
service provision and training needs in outpatient mental
health settings. Psychiatr Q. 1999;70:63–74.
50. McKinnon K, Cournos F, Herman R, Satriano J, Silver BJ,
Puello I. AIDS-related services and training in outpatient
mental health care agencies in New York. Psychiatr Serv.
51. McKinnon K, Wainberg ML, Cournos F. HIV/AIDS
preparedness in mental health care agencies with high and low
substance use disorder caseloads. J Substance Abuse.
52. Grassi L. Risk of HIV infection in psychiatrically ill
patients. AIDS Care. 1996;8:103–106.
53. Stewart D, Zuckerman C, Ingle J. HIV seroprevalence in
a chronically mentally ill population. J Natl Med Assoc.
54. Cournos F, Empfield M, Horwath E, et al. HIV
seroprevalence among patients admitted to two psychiatric
hospitals. Am J Psychiatry . 1991;148:1225–1230.
55. Sacks D, Dermatis H, Looser-Ott S, Burton W, Perry S.
Undetected HIV infection among acutely ill psychiatric
inpatients. Am J Psychiatry. 1992;149:544–545.
56. Volavka J, Convit A, Czobor P, et al. HIV
seroprevalence and risk behaviors in psychiatric inpatients. Psychiatry
57. Freedberg K, Samet J. Think HIV: why physicians should
lower their threshold for HIV testing. Arch Intern Med.
58. Weinrich M, Curtis J, Calrine J, et al. HIV risk
screening in the primary care setting: assessment of
physicians’ skills. J Gen Intern Med.
59. Mahler J, Yi D, Sacks M, Dermatis H. Undetected HIV
infection among patients admitted to an alcohol rehabilitation
unit. Am J Psychiatry. 1994;151:439–440.
60. Empfield M, Cournos F, Meyer I, et al. HIV
seroprevalence among homeless patients admitted to a
psychiatric inpatient unit. Am J Psychiatry.
61. Horwath E, Cournos F, McKinnon K, et al. Illicit drug
injection among psychiatric patients without a primary
substance use disorder. Psychiatr Serv.
62. Walkup J, McAlpine D, Olfson M, et al. Recent HIV
testing among general hospital inpatients with schizophrenia:
findings from four New York City sites. Psychiatr Q.
63. Kelly J, Murphy D, Bahr R, et al. AIDS/HIV risk
behavior among the chronically mentally ill. Am J
64. Kelly J, Murphy D, Sikkema K, et al. Predictors of high
and low levels of HIV risk behavior among adults with chronic
mental illness. Psychiatr Serv. 1995;46:813–818.
65. Walkup J, Gallagher S. Schizophrenia and the life
course: national findings on gender differences in disability
and service use. Int J Aging Hum Dev. 1999;49:79–105.
66. Susser E, Valencia E, Miller M, et al. Sexual behavior
of homeless mentally ill men at risk for HIV. Am J
67. Kalichman S, Kelly J, Johnson J, Bulto M. Factors
associated with risk for HIV infection among chronic mentally
ill adults. Am J Psychiatry. 1994;151:221–227.
68. Goodman L, Rosenberg S, Musser K, Drake R. Physical and
sexual assault history in women with serious mental illness:
prevalence, correlates, treatment, and future research
directions. Schizophr Bull. 1997;23:685–699.
69. Coverdale JH, Turbott SH. Sexual and physical abuse of
chronically ill psychiatric outpatients compared with a
matched sample of medical outpatients. J Nerv Mental Dis.
70. Coverdale J, Aruffo J. AIDS and family planning
counseling of psychiatrically ill women in community mental
health clinics. Community Mental Health J.
71. McKinnon K, Cournos F, Meyer-Bahlberg H, et al.
Reliability of sexual risk behavior interviews with psychiatry
patients. Am J Psychiatry. 1990;150:972–974.
72. Sullivan G, Koegel P, Kanouse D, et al. HIV and people
with serious mental illness: the public sector’s role in
reducing HIV risk and improving care. Psychiatr Serv.
73. Brook R, Chassin M, Fink A. A method for the detailed
assessment of the appropriateness of medical technologies. Int
J Technol Assess Health Care. 1986;2:53–63.
74. Sharpe V, Faden A. Appropriateness in patent care: a
new conceptual framework. Milbank Q. 1996;74:115–138.
75. Pescosolido BA, Monahan J, Link BG, Stueve A, Kikuzawa
S. The public’s view of the competence, dangerousness, and
need for legal coercion of persons with mental health
problems. Am J Public Health. 1999;89:1339–1345.
76. Cooper M. Suspect has a history of mental illness, but
not of violence. New York Times. January 5, 1999:B6.
77. Kenworthy T. Gunman kills 2, wounds 4 in Utah library
rampage; assailant slain in shootout at Mormon site. Washington
Post. April 16, 1999:A2.
78. Taylor M. Unabomb suspect schizophrenic but competent:
Kaczynski can stand trial despite psychiatric findings. San
Francisco Chronicle. January 21, 1998:A1.
79. Lawrie S. Stigmatisation of psychiatric disorder. Psychiatr
80. Dohrenwend BP, Levav I, Shrout PE, et al. Socioeconomic
status and psychiatric illness: the causation-selection issue.
81. Rothschild N. When Ignorance Isn’t Bliss: The
Impact of New York State’s Mandatory Newborn HIV Testing Law
on Health Services Utilization and on Psychosocial Well-Being
[dissertation]. New York, NY: Columbia University School of
Public Health; 2000.
82. Martin JK, Pescosolido BA, Tuch SA. Of fear and
loathing: the role of "disturbing behavior," labels
and causal attributions in shaping public attitudes toward
person with mental illness. J Health Soc Behav.
83. Cooper EB. Mandatory testing of pregnant/delivering
women and newborns: a legal, ethical, and pragmatic
assessment. In: Program and abstracts of the XI International
Conference on AIDS; July 7–12, 1996; Vancouver, British
Columbia. Abstract We.D.491.
84. Bayer R. AIDS and the limits of control: public health
orders, quarantine, and recalcitrant behavior. Am J Public
85. Gellert GA, Page B, Weismuller PC, Ehling RL. Managing
the noncompliant HIV-infected individual: experience from a
local health department. AIDS Public Policy.
86. Grob G. From Asylum to Community: Mental Health
Policy in Modern America. Princeton, NJ: Princeton
University Press; 1991.
87. Weinhardt LS, Carey MP, Johnson BT, Bickham NL. Effects
of HIV counseling and testing on sexual risk behavior: a
meta-analytic review of published research, 1985–1997. Am
J Public Health. 1999;89:1397–1405.
88. Bogart LM, Kelly JA, Catz SL, Sosman JM. Impact of
medical and nonmedical factors on physician decision making
for HIV/AIDS antiretroviral treatment. J Acquir Immune
Defic .Syndr 2000;23:396–404.
89. Fairfield KM, Libman H, Davis RB, Eisenberg DM. Delays
in protease inhibitor use in clinical practice. J Gen
Intern Med. 1999;14:446–448.
90. Bangsberg D, Tulsky JP, Hecht FM, Moss AR. Protease
inhibitors in the homeless. JAMA. 1997;278:63–65.
91. Walkup J, Sambamoorthi U, Crystal S. Incidence and
consistency of antiretroviral use among HIVinfected Medicaid
beneficiaries with schizophrenia. J Clin Psychiatry.
92. Walkup J, Sambamoorthi U, Crystal S. PI/NNRTI treatment
for patients with HIV and serious mental illness. Paper
presented at: 129th Annual Meeting of American Public Health
Association; October 21–25, 2001; Atlanta, Ga.
93. Bangsberg DR, Hecht FM, Charlebois ED, et al. Adherence
to protease inhibitors, HIV-1 viral load, and development of
drug resistance in an indigent population. AIDS.
94. Asch S, London A, Barnes P, Gelberg L. Testing for
human immunodeficiency virus infection among tuberculosis
patients in Los Angeles. Am J Respir Crit Care Med.
95. American Psychiatric Association. Guidelines for HIV
antibody testing. Am J Psychiatry. 1998;155:1648.
96. Schwartz-Watts D, Montgomery LD, Morgan DW.
Seroprevalence of human immunodeficiency virus among inpatient
pretrial detainees. Bull Am Acad Psychiatry Law.
97. Susser E, Valencia E, Conover S. Prevalence of HIV
infection among psychiatric patients in a New York City
men’s shelter. Am J Public Health. 1993;83:568–570.
98. Baker A, Dixon J. Motivational interviewing for HIV
risk reduction. In: Miller WR, Rollnick S, eds. Motivational
Interviewing: Preparing People to Change Addictive Behavior.
New York, NY: The Guilford Press; 1991:293–302.