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OCR for page 95
4
Opportunities for Altering the
Course of the Epidemic
Because of the lag time up to four years or longer in the develop-
ment of AIDS after HIV infection, approximately 50 percent of the AIDS
cases diagnosed in 1991 will be in persons who are infected now but do
not yet have AIDS (Morgan, 19861. Thus, about half of the AIDS cases
diagnosed in 1991 and a growing proportion after that can potentially
be prevented. It is in this course of action that the greatest opportunities
for altering the course of the epidemic lie.
As discussed in Chapter 6, the committee believes that a vaccine
against HIV infection is not likely to be available for at least five years and
probably longer. Drugs are now being tested in the hope that one can be
found to safely arrest the progress of HIV infection. Whether that search
will be totally successful is highly uncertain. Thus, neither potential
vaccines nor drug therapies offer much hope in the near future for altering
the course of the epidemic.
It is necessary in this situation to maximize the use of available means
of controlling the epidemic. In a few short years a remarkable amount has
been learned about HIV and how it is transmitted. This solid evidence
provides the basis for reasonable decisions about actions that must be
taken to mitigate the devastating impact of HIV infection.
The challenge to those entrusted with fashioning policies to protect the
public health in this regard is massive (Jonsen et al., 1986; Levine and
Bermel, 19851. There is no agent currently available to treat the underly-
ing disease process, no one has been known to recover from AIDS, and
those exposed to the virus must be presumed to be chronically infectious.
95
OCR for page 96
96 CONFRONTING AIDS
Furthermore, the main groups at risk are subject to social stigma and
private discrimination, which complicates the picture for health officials
seeking to identify those who are or may become infected and thus
capable of transmitting the virus.
Traditional public health responses to infectious diseases have included
identifying those who harbor the infection. Among the methods used to
accomplish this are testing or screening, reporting cases and compiling
registries of those who are infectious, and isolating, when necessary, the
persons capable of transmitting infection. Such programs may rely either
on the voluntary compliance of those at risk or on compulsory measures.
Because compulsory measures compromise liberty, autonomy, and pri-
vacy (especially when such fundamental behavior as sexual activity is at
issue), they must be carefully considered in light of the potential public
health benefit. Many such programs have historically been shown to be
invidious, ineffective, or discriminatory (Brandt, 19851. This chapter
describes the opportunities available for protecting individuals from HIV
infection in a society that values privacy and civil liberties.
PUBLIC EDUCATION
For at least the next several years, the most effective measures for
significantly reducing the spread of HIV infection are education of the
public and voluntary changes in behavior. There are many social ills for
which public education is prescribed as a cure, especially where there are
few specific responses available. Education can sometimes be a soft
substitute for hard action. In contrast, public education about HIV
infection is, and will continue to be, a critical public health measure, even
if a vaccine or drug becomes available. Education in this instance is not
only the transfer of knowledge but has the added dimension of inducing,
persuading, and otherwise motivating people to avoid the transmission of
HIV. While it would be unrealistic to believe or claim that the spread of
HIV infection is likely to be stopped by educational efforts to induce
behavioral change, the efforts can be entered into with a strong degree of
conviction and hope. Carefully monitored preventive interventions for
other health problems (e.g., to reduce smoking or heart disease or to
improve diet) show that these can be effective when pursued intensively
(Farquhar et al., 19841. The incentive to avoid risk of infection with HIV
should also be strong given the higher probability of adverse outcome
(if infected) and the closer temporal connection between the behavior
and the threat to health. Hence, education to prevent HIV infection can
be strongly expected to bear results. In addition, by accompanying
it with behavioral research directed at improving the knowledge of how to
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ALTERING THE COURSE OF THE EPIDEMIC 97
induce more effectively the desired behavioral changes, its effect can be
heightened.
The present level of AIDS-related education is woefully inadequate. It
must be vastly expanded and diversified, targeted not only at the general
public but at specific subgroups, such as those in which significant
transmission can be anticipated, those in a position to influence public
opinion, and those who interact with infected individuals.
What Should Be the Content of Public Education?
The epidemiology of AIDS clearly demonstrates that unprotected
sexual intercourse (receptive anal or vaginal intercourse), the use of
shared needles and syringes, and the transfusion of blood products
contaminated by HIV represent the greatest danger of transmission of the
virus. Discussion of alternative sexual and other behaviors that provide a
measure of protection against transmission must be conveyed to those
targeted for AIDS education (Darrow and Pauli, 19841.
If behavior modification is the goal of education about AIDS, the
content of the material presented must address the behavior in question in
as direct a manner as possible. Educators must be prepared to specify that
certain sexual practices are activities in which there is a very high risk of
HIV transmission. Admonitions that one must avoid "intimate bodily
contact" and the "exchange of bodily fluids" while simultaneously
averring the safety of "casual contact" convey at best only a vague
message. For instance, they may be understood as implying that one must
avoid all sexual activities, a program that few will be willing to follow.
People also need reassurance that certain sexual practices involve little or
no risk of infection.
There has been considerable debate among health professionals, public
health officials, and homosexuals about what exactly constitutes "safe
sex" and how best to convey information about the relative risk of
various behaviors (Handsfield, 19851. Many have argued that it is more
accurate to speak in terms of "safer sex," because the unknowns are still
such that it would be irresponsible to certify any particular activity as
absolutely safe. Much of this argument will be moot as a more sophisti-
cated understanding of modes of transmission is gained from research and
studies under way in this country and abroad.
Condoms have been shown under laboratory conditions to inhibit the
transmission of HIV, as has been demonstrated with at least two other
viruses of approximately similar size: cytomegalovirus and herpes
simplex virus type 2 (Conant et al., 19861. More needs to be known,
however, about the practical efficacy of condoms in blocking sexually
transmitted diseases spread by anal intercourse. Is anal intercourse more
OCR for page 98
98 CONFRONTING AIDS
likely to break or tear condoms? Does the type of lubricant affect the
integrity of the membrane? Are certain materials more effective than
others?
Prudishness about the use and promotion of condoms has inhibited
their use. They need to be widely available in establishments that have the
potential to foster sexual liaisons, such as bathhouses and singles bars.
They should also be readily accessible in less sexually oriented establish-
ments, both to maximize their availability and to minimize the stigma
associated with their use. Sexually active youth (both homosexual and
heterosexual, male and female), being less likely to have been infected
with HIV, have the most protection to gain from the use of condoms.
Increased condom use has been demonstrated following explicit, fo-
cused educational campaigns in the past (Darrow, 19741. More needs to
be done (Goldstein, 19861. Programs designed to encourage the use of
condoms must take account of different motivational forces underlying
their use as contraception versus their use in preventing sexually trans-
mitted diseases. Campaigns to encourage use of condoms must also
overcome people's belief that they diminish sexual pleasure or at least
make them aware of the benefits in such a trade-o~. The increased
availability of condoms probably will raise concerns about encouraging
sexual activity by young people who are not sufficiently mature. Such
concerns, while understandable, are overshadowed by the dire conse-
quences of HIV infection.
An integral aspect of an education campaign must also be the wide
dissemination of clear information about behaviors that do not transmit
the virus. The public must be assured that ordinary standards of personal
hygiene that currently prevail are more than adequate for preventing
transmission of AIDS even between persons living within a single
household; transmission will not occur as long as one avoids the relatively
short list of dangerous sexual and drug-use practices that have been
identified. Unreasonable alarm about so-called casual contact with indi-
viduals perceived as possibly infected with HIV has produced many
needless instances of discrimination and distress in the workplace and
elsewhere (Bayer and Oppenheimer, 19861. There remain persons so
misinformed about the relationship between blood transfusion and AIDS
that they are afraid to be blood donors, much less blood recipients. Polls
have shown that as much as one-third of the general population believes
that AIDS can be acquired through blood donation (Engel, 1986~.
i!
The currently available evidence indicates that there is considerable
gnorance of the ways in which AIDS is transmitted. Surveys document
substantial fractions of American adults who believe incorrectly that
AIDS can be transmitted by such means as a sneeze or by sharing a
drinking glass (Eckholm, 1985b). Public education programs must aim at
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ArTERING THE COURSE OF THE EPIDEMIC 99
reducing this ignorance both in the general population and in the groups
that will be particular targets of public education those at highest risk of
contracting or transmitting the infection. In this regard, the committee is
concerned about the Centers for Disease Control directive that empanels
local review boards to determine whether materials developed for AIDS
education are too explicit and in violation of local community standards-
this is the so-called "dirty words" issue (Medical World News, 1985~. The
result of such a process could be to cut off frank, explicit information from
areas where it is needed the most in regions outside those urban centers
that have large concentrations of homosexual men and IV drug users
Her O`xI~rPnP~Q of the. ~n~.~.ific..~ of HIV transmission is already high.
~ v 1 1 ~ ~ ~ ~ ~ v ~ ~ _ ~ ~ ~ ~ v ~ ~ ~ ~ ~ _ ~ r ~
The information media's coverage of AIDS has been extensive, and it
has been not always easy to distinguish between urgency and alarm.
Public officials have taken steps to allay unreasonable fears for example,
Margaret M. Heckler, then Secretary of the U.S. Department of Health
and Human Services, was publicized shaking hands with an AIDS
sufferer and donating blood. Yet such constructive efforts are undermined
by media exaggeration.
Writers and editors torn between the dictates of accurate reporting and
standards of good taste in family newspapers, magazines, and on televi-
sion have described modes of transmission euphemistically. Although
occasional stories in major newspapers discussed the relative risks of
receptive anal intercourse in so many words early in 1983 (when infor-
mation about transmission began to emerge from epidemiologic research),
most accounts spoke in terms of "sexual" or "intimate" contact more
generally.
The picture is changing, even in family newspapers. A review of media
coverage of AIDS noted this evolution, as resected in the following
quotations from unsigned editorials in the New York Times (Diamond and
Bellitto, 1986).
· "[The AIDS virus is transmitted] through the exchange of body
fluids, as in sexual contact" (August 21, 1985).
· "AIDS is transmitted . . . by drug abusers sharing unclean needles or
by homosexual relations" (September 3, 1985).
· "AIDS is spread in two main ways, anal intercourse and the sharing
of unclean needles by drug addicts" (September 15, 1985). EVaginal
intercourse now needs to be added to these routes of transmission.]
AIDS sufferers can obtain much information about the prospects for
new treatments from the lay press alone. Yet the media have sometimes
provided a distorted view of hopes for success. This tendency unfortu-
nately is abetted by the inclination of some scientists to herald results of
OCR for page 100
100 CONFRONTING AIDS
clinical trials prematurely, sometimes in forums outside the mechanism of
peer-reviewed journals (Check, 19854.
For those already diagnosed with an HIV-related condition, informa-
tion should be available regarding the kinds of treatment and volunteer
services available. AIDS sufferers have been desperate for information
about the testing of new drugs. Equitable access to drugs being tested in
clinical trials will depend in part upon HIV-infected individuals being
aware of such endeavors.
What Are the Aims of Public Education?
Because HIV infection is transmitted by means of only a few specific
types of behavior, a prime goal of education about AIDS is to modify or
eliminate such behavior. Means must be found to overcome the major
obstacles to achieving this goal. In matters of sexual behavior, such
obstacles include poorly understood individual attitudes and preferences
that may have arisen early in life and become relatively firmly fixed.
In dealing with IV drug users, the obstacles to educational success
include both the attitudes of users and the laws that affect their conduct.
It must be made clear that, short of abandoning the behavior entirely, the
use of personal and sterile injection equipment is the only way to avoid
participating in the chain of transmission of the virus. The sharing of
injection equipment appears to be a ritual among many drug users,
perhaps begun because of a lack of ready access to sterile equipment or
because of laws proscribing sale and possession of equipment. Research
is needed to identify the educational techniques that will be most effective
in convincing users of the danger of needle sharing. Also needed are ways
to impress women users that infection can be transmitted by them to their
fetuses with disastrous results.
Another goal of educational activities should be to replace the atmo-
sphere of hysteria and irrational fear that is found in some quarters with
rational information that will engender a level-headed attitude about the
disease and one's own risk of becoming infected with the virus. Since
many diverse groups must be educated, an early activity in this campaign
must be the training of trainers. A network of individuals who are firmly
grounded in the facts of the disease and who are adept at transmitting
those facts in diverse settings should be established.
Who Needs Education?
The most obvious targets for a campaign of education about AIDS are
the presently identified high-risk groups: homosexual men, IV drug users,
prostitutes, and sexual partners of those in high-risk groups. Some efforts
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ALTERING THE COURSE OF THE EPIDEMIC 101
have already been made in this direction, but in general the only efforts
with any claim to success have been those conducted by homosexuals
through voluntary activist organizations. Many of these efforts have been
funded by local homosexual groups themselves. Homosexual men in
high-incidence areas such as San Francisco and New York report a
decrease both in the numbers of sexual partners and in risky sexual
practices. These self-reported behavioral changes are consistent with the
lower incidence of rectal gonorrhea reported in these areas (McKusick et
al., 19851.
Although homosexuals, especially in urban areas, are frequently por-
trayed as highly organized and easily reached, it would be a mistake to
assume that all men who engage in homosexual activities that may put
them at risk perceive themselves as belonging to the homosexual com-
munity, read the homosexual press' or listen to homosexual leaders. It is
important to communicate broadly the message that specific sexual
practices involving infected persons are dangerous, not that homosexual
men are at risk.
Beyond the segments of the population that are at high risk of infection,
many other groups must receive education about AIDS. Heterosexuals,
particularly those who have multiple partners, must be made aware of the
risk to them. Health care professionals must acquire and constantly
update their store of information to be helpful to their clients (not only
those suffering from clinical consequences of the infection but also the
"worried well," both infected and uninfected) and to others with whom
they are in a position to communicate. Public officials, opinion makers,
and the press represent other groups to which extensive education about
AIDS must be targeted. Their influence on matters of public policy is of
prime importance, and misinformation among these groups can counter-
act the beneficial effects of many other educational efforts.
The youth of the nation, emerging into the sphere of sexual activity and
becoming potential customers in the illicit drug trade, must be alerted to
the existence of the disease and to its mode of transmission. Surveys of
high school students reveal an alarming degree of misinformation about
AIDS. Even many students living in San Francisco, an AIDS epicenter,
were seriously misinformed as late as 1986. In a survey of 1,300 high
school students, 40 percent did not know that AIDS is caused by a virus.
One-third believed that a person could contract the disease by merely
"touching someone who has AIDS" or by "using a person's comb."
Four in 10 students did not know that the use of a condom during sexual
intercourse decreases the risk of transmitting HIV infection.
The need for educating the nation's youth about sexually transmitted
diseases is well known. For example, in 1980, prior to recognition of
AIDS, the U.S. Public Health Service (1980) published a document
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102 CONFRONTING AIDS
entitled Promoting Health/Preventing Disease: Objectives for the Nation,
which included a set of goals for the decade ahead. Among them was one
with relevance for the AIDS educational effort: "By 1990, every junior
and senior high school student in the U.S. should receive accurate, timely
education about sexually transmitted disease."
Sex education in the schools still must overcome considerable political
opposition and bureaucratic intransigence. Nevertheless, at least nine
states have passed statutes that permit or even mandate education on
sexually transmitted diseases in the public schools. There are some
exceptions to the general unwillingness to broach issues of sex, even
homosexuality. The Oregon legislature established a special Venereal
Disease Education Teachers' Scholarship Fund. Ohio's Department of
Health has piloted an information package on AIDS for use in schools
(Intergovernmental Health Policy Project, 19851. Public schools in New
York City have integrated AIDS education into "family life" curricula
and mandated that a two-lesson course be available to all students.
Letters about the course were sent home to the parents of 2,800 students
in one high school; the parents could request that their child be excused
from the class only three did so (Rimer, 19861.
Even if the dangers of HIV infection are not discussed in the context of
sex, certainly these dangers can be discussed in school curricula dealing
with the dangers of drug abuse. Moreover, groups such as the American
Red Cross are more likely than groups identified with homosexuals to be
permitted to discuss the risks of HIV transmission in the schools.
Recently, the Red Cross has increased its AIDS education efforts
considerably to embrace concerns beyond blood banking in educating the
public at large.
Blacks and Hispanics comprise a disproportionately high percentage of
AIDS cases, in spite of the media's frequent portrayal of the disease as a
problem almost exclusively of white, middle-class, homosexual men.
These groups require specially focused programs developed by health
departments in areas having large black and Hispanic populations.
There is much confusion about the possibility of heterosexual trans-
mission of HIV (in both directions) and about the degree of risk
associated with heterosexual contact. Hotlines report increased numbers
of calls from women. The public at large deserves to receive considerable
attention.
The large proportion of IV drug users among AIDS sufferers represents
a serious threat to themselves and to their sexual partners. Many IV drug
users are already caught up in patterns of asocial and antisocial behavior
that may make appeals meaningless to them. Self-preservation will need
to be emphasized strongly for this group of people.
The lack of available treatment programs and facilities for IV drug users
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ALTERING THE COURSE OF THE EPIDEMIC 103
represents a serious problem. Drug treatment programs are greatly
overtaxed at present, and a program that inspired widespread efforts at
rehabilitation among IV drug users (to avoid AIDS) could swamp already
strained facilities. Thus, efforts to achieve access to IV drug users must
be coupled with realistic planning of ways to cope with success.
Who Should Do the Educating?
The range and diversity of education needed against AIDS make it
obvious that the effort must take many forms and find support from many
sources. Health professionals doctors, nurses, health educators, public
health officials are all important links in the educational process. They
must be taught through professional associations, academic curricula, and
continuing education so that they, in turn, can teach their patients and
associates.
Among members of high-risk groups, counseling by peers is likely to be
the most effective source of information, and such counseling should be
available for those at risk. Government at all levels, not only local officials
in certain high-incidence areas, must be willing to support and fund efforts
to educate members of high-risk communities.
Many governmental efforts will necessarily address the general public
rather than special target groups and will probably be limited to activities
such as the distribution of pamphlets, placement of advertisements, and
organization of telephone "hotlines." These activities will be useful in
maintaining public consciousness of the disease and in reinforcing more-
specifically-targeted educational efforts performed by others. However, if
nothing else is done, these general educational efforts will be grossly
inadequate.
Government must prepare to fund targeted education through grants
and contracts to private organizations that can communicate with special
groups, in language appropriate to those groups, about relevant aspects of
the disease. These include homosexual organizations (among which
appropriate educational work has already begun in some areas), schools
and colleges, women's groups, youth groups, prisons, prostitutes'
groups, and any type of organization with access to the IV drug user
population.
A massive, coordinated educational program intended both to interrupt
transmission of the virus and to allay public fears will not be cheap.
Although funding by the federal government for AIDS-related activities
has recently increased, the amounts budgeted total less than $25 million;
many times that amount could usefully be spent (Fineberg, 1986; Jenness,
1986~.
Although there is need for much greater involvement of foundations
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104 CONFRONTING MD3
and private sector organizations with expertise in health promotion, such
participation would not relieve the government of a fundamental respon-
sibility in funding and implementing educational programs.
The most fundamental obligation for AIDS education rests with the
federal government, which alone is situated to develop and coordinate a
massive campaign to implement the educational goals outlined above.
Assessing Educational Interventions
The effects of educational programs will not be immediately reflected in
declines in the incidence of AIDS cases. As noted earlier, AIDS incidence
rates reflect infections contracted several years prior to the onset of the
disease. If there were reliable data on seropositivity in representative
samples of the target populations, these data could provide an indicator of
the effectiveness of such programs. But even such up-to-date indicators of
the spread of the infection would be of limited value, because seropositiv-
ity incidence rates can change for reasons unrelated to the effects of
education programs. Such aggregate data would not identify who has
been exposed to particular educational programs. Moreover, the likeli-
hood of infection for an individual can change with the prevalence of
infection in the population. For example, an individual may practice
"safer sex" and greatly reduce his number of sexual partners as the result
of exposure to an education program, but his likelihood of infection may
nonetheless rise if the prevalence of the infection increases among his
partners. This has been the case in San Francisco, where dramatic
changes in sexual practices among homosexual men have been under-
mined by skyrocketing seropositivity rates (Centers for Disease Control,
1985b).
In addition to measures of disease and incidence and knowledge about
disease transmission as reflected in polling data, it will be crucially
important to obtain reliable indicators of changes in the incidence of
behaviors that involve risk of infection. Such measurements will pose a
considerable methodological challenge. Survey questions that ask
whether respondents have changed their behavior because of the AIDS
epidemic are open to serious doubts as to their validity. In particular,
these questions especially when asked in the context of an education
program that reinforces notions about the dangerousness of the disease
have a potential for biasing estimates of the proportion of people who
have changed their behavior. This source of bias will require careful study
(using probing questions, alternate forms of questionnaires, and so on),
and it may be especially crucial in studies of high-risk groups.
Evaluating the effects of different educational programs will require
that relevant longitudinal data be gathered from participants in the
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ALTERING THE COURSE OF THE EPIDEMIC 105
programs and from control groups. Longitudinal data are necessary
because only long-term changes in behavior patterns will be elective in
controlling the spread of the epidemic. For example, with the relatively
recent advent of HIV antibody testing, little is known about how
individuals who test positive will react to this knowledge (see section on
"Voluntary Testing," below).
The launching of a massive and decentralized education program will
have many unique elements, and it may involve a slow learning process
with considerable trial and error. Rigorous evaluations of these education
programs will be important if we are to learn from experience and thereby
improve the programs.
The technology and basic conceptual framework for conducting rea-
sonable evaluation studies already exist. The evaluation of AIDS educa-
tion programs should be conducted by a group independent of those
responsible for developing and implementing the programs, and the
evaluators should provide for strong centralized oversight and quality
control of their work. Past experience with large-scale, decentralized
social research and evaluation programs indicates that research may be of
poor quality without such oversight.
A Special Case Changing Behavior Among IV Drug Users
Although IV drug users have been recognized as a unique "at risk"
group, they have not attracted as much media attention as other groups.
Understanding of this group is critical, however, not only because they
are the second largest group to have developed AIDS in the United
States, but because they are the primary source for heterosexual trans-
mission to their sexual partners and fetuses. Moreover, the large differ-
ences in seropositivity prevalence rates among IV drug users in different
parts of the country mean that there is a tremendous opportunity to halt
the further spread of infection by changing behavior among IV drug users.
Drug abusers in general and IV drug users in particular do not belong to
organized support, self-help, or advocacy groups. On the contrary, these
groups have been identified as reservoirs of medical problems (such as
hepatitis) and social ills; IV drug use is traditionally regarded as being
associated with self-destructive activities.
Generally, IV drug users are identified in one of two circumstances:
when they seek treatment or when they are arrested. Yet many IV drug
users are not regular users, nor are they readily identified by either the
health care or the criminal justice system. Treatment for drug-related
problems may be provided by the general medical care delivery system
without the patient's ever being labeled an IV drug user. Frequently, IV
drug users present with clinical signs of depression or other psychiatric
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128 CONFRONTING AIDS
generally accepted means of preventing the spread of AIDS other than
education, the usefulness of reporting identifying information to public
health authorities would be unlikely to outweigh the adverse social
consequences of such identification.
Compulsory Measures Among Institutionalized Populations
Most of the compulsory actions taken to deal with AIDS have affected
closed-community settings such as prisons and jails, mental hospitals, and
residences for the mentally retarded. As mentioned, the U.S. armed
forces have also instituted compulsory testing of voluntary recruits
active-duty personnel, and reservists.
Several prison and jail systems across the country have instituted
compulsory serologic testing for HIV infection. When prisoners are found
to have AIDS or ARC, they are often placed in isolation areas or
transferred to other facilities where they can be treated. Prisoners who
are seropositive are often segregated and discharged as soon as practica-
ble under the requirements of the correctional system. Some prison
systems, notably those in jurisdictions with a large number or proportion
of prisoners who may be in high-risk groups (especially IV drug users),
are considering establishing systems that would transfer seropositive
inmates to special facilities more able to deal with such populations.
The public authorities who administer prisons, jails, mental hospitals,
and similar residential centers have a special legal obligation to care for
patients and residents by taking precautions to prevent the spread of
dangerous infectious diseases in closed facilities.
Compulsory Closing and Regulation of Facilities
In a few parts of the country, notably New York City and San
Francisco, public health authorities have taken action to close a few
bathhouses and bars or taverns where multiple, usually anonymous,
sexual encounters take place among male homosexual clientele. These
closings have been done under special regulations or under existing legal
powers (Rabin, 19861. Only a few such closings have taken place, and
they have perhaps been largely symbolic, to aid in general campaigns
meant to discourage the use of such places for sexual activities known to
spread HIV infection and other sexually transmitted diseases.
Attempts to close the bathhouses resulted in pitched battles over what
is for some a symbol of homosexual liberation, and for others, commer-
cial establishments allowed to foster casual, anonymous sexual activity
putting participants at the greatest risk of transmitting HIV infection.
Critics in New York City have said that regulations closing the bath
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ALTERING THE COURSE OF THE EPIDEMIC 129
houses are tantamount to the decriminalization of sodomy and that too
broad regulations would allow closure of other bars, clubs, bookstores,
and even hotels. In contrast, some public health officials have said that to
allow such institutions to continue to operate in the face of the epidemic
would be irresponsible.
Although high-risk sexual relations with many anonymous partners
admittedly puts one at the greatest risk of HIV infection, opponents of
bathhouse closure have argued that it is the type of behavior, not its
locus, that presents the greatest danger. Closing such establishments
might discourage such behavior. On the other hand, it could merely
remove it to public parks or private houses. Moreover, a forum and an
opportunity for public education to a targeted high-risk group could be
lost.
Nevertheless, when applied conservatively and reasonably, these com-
pulsory closings can be an effective public health measure. Furthermore,
they would most likely be upheld in the courts as constitutional. If public
health authorities should decide that compulsory closing or the regulation
of facilities is appropriate as an extraordinary measure to stem the tide of
AIDS, care must be taken not to transform such actions into the
harassment of any facilities catering to a largely homosexual clientele for
meals, entertainment, and social discourse; the constitutional protections
afforded the freedom of association must be respected.
Compulsory closing of such facilities should be a last resort, following
regulatory inspection programs of a more general nature to discourage
sexual contact that may spread disease and to maintain environmental
and sanitation standards (for example, through improved lighting and
removal of private rooms). Such regulations should, of course, apply to
any public facilities where sexual practices may be dangerous to health
and may spread disease, whether the clientele is homosexual, heterosex-
ual, or both.
Recommendations
· The decision of whether to be tested for antibody to HIV should
remain a matter for individual discretion, given the array of potential risks
and benefits that the test poses for those tested. Testing should be
encouraged in light of its potential public health benefits. Mandatory
screening of at-risk individuals is not an ethically acceptable means for
attempting to reduce the transmission of infection. In addition, such a
mandatory program would not be feasible in an open society.
· Testing programs should be coupled with strong guarantees of
confidentiality. Such assurances should perhaps be backed by punitive
sanctions for unauthorized disclosure of antibody test results. The
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130 CONFRONTING AIDS
committee does not recommend compulsory reporting of seropositive test
results.
· The committee does not favor the establishment or the use of
compulsory measures for isolation or quarantine of AIDS patients or
seropositive persons in the general population. There may be need,
however, to use compulsory measures, with full due process protection,
in the occasional case of a recalcitrant individual who refuses repeatedly
to desist from dangerous conduct in the spread of the infection.
· Special precautions against the spread of AIDS and the AIDS virus
may be necessary in closed populations, such as in prisons, jails, mental
institutions, and residences for the retarded. Such measures should be
applied with caution and only as clearly necessary and should not be used
or cited as models for compulsory programs among the general popula-
tion.
· As a general policy, children with AIDS should be admitted to
regular primary and secondary classes. The CDC guidelines are recom-
mended for further reference in this area.
FUNDING FOR EDUCATION AND OTHER
PUBLIC HEALTH MEASURES
Although the committee did not attempt to budget in detail the cost of
the education and other public health measures needed to stem the spread
of HIV infection, it recognizes that some estimate of the likely magnitude
of resources is needed. These include funds for risk-reduction education,
serologic screening, surveillance, and experiments with the greater avail-
ability of needles and syringes and drug use treatment aimed at preventing
the spread of HIV. In some cases, as in the treatment of drug abuse or
counseling associated with serologic testing, the line between expendi-
tures on prevention and treatment is somewhat blurred.
Funds directed toward preventing HIV transmission presently come
predominantly from federal and state sources. Federal funds for AIDS
education and other public health measures are appropriated to the CDC
and also flow via that agency to states through a variety of arrangements,
including cooperative agreements, contracts, and grants for activities
such as establishing alternative serologic testing sites and demonstration
projects for risk-reduction education. The total funds allocated to the
CDC for all AIDS-related public health measures are estimated to have
been $64.9 million in FY 1986. (AIDS education may also be undertaken
by the Office of the Assistant Secretary for Health.) For FY 1988, $107.1
million has been requested. The Public Health Service budget request to
the Department of Health and Human Services for FY 1988 includes $68.8
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ALTERING THE COURSE OF THE EPIDEMIC 131
million for all AIDS-related health education activities within a total
request of $471.1 million.
The Intergovernmental Health Policy Project (1986) has recently re-
viewed the expenditures of states for AIDS prevention. According to the
project, state expenditures have grown markedly in the last few years. In
FY 1984-1985 total expenditures by the states and the District of Colum-
bia were $9.6 million, and in FY 1985-1986 they were $33 million. For FY
1986-1987 a total of $65 million is projected. The latter total is for 21
legislatures and the District of Columbia. But five states (California, New
York, Florida, New Jersey, and Massachusetts) account for 85 percent of
the total expenditures since July 1, 1983 ($117.3 million), with California
and New York jointly accounting for 66 percent. Of this $117.3 million,
$5.2 million has come from redirection or reallocation of existing re-
sources within state health departments usually from communicable or
sexually transmitted disease programs.
The states of California and New York together account for approxi-
mately 55 percent of all reported AIDS cases, with the New York and San
Francisco SMSAs alone accounting for 40 percent of cases (as of August
1, 19861. Thus, there is a positive correlation between the state expendi-
tures and the number of reported AIDS cases. However, funding future
infection control efforts through a "formula" based on the number of
AIDS cases in an area would be a grave mistake in light of the long lag
time between infection and disease. Indeed, the Public Health Service has
projected that 80 percent of all new AIDS cases in 1991 will occur outside
of New York City and San Francisco. Approximately 50 percent of these
cases are potentially preventable, and the others will occur in individuals
already infected (Morgan, 19861. In subsequent years the proportion of
cases potentially preventable is larger.
If efforts to stop the spread of infection are to be effective, they must
start (or be expanded) immediately, not only in areas where there are now
AIDS cases but also in areas where there are as yet few or no cases.
Delaying such efforts until cases occur would make it likely that the
problem of AIDS in those areas will subsequently be far greater. The
opportunity to forestall the further spread of infection must not be lost.
Some examples illustrate the magnitude of funds needed for all the
public health prevention efforts listed above:
· Testing at alternative test sites, including counseling, is estimated to
cost approximately $40 per individual (J. Chin, California State Depart-
ment of Health Services, personal communication, 1986), and although
the numbers in the various AIDS risk groups are not precisely known,
they may encompass as many as 10 million homosexual males, 1.5 million
IV drug users, and probably millions of heterosexuals at some risk. Also,
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132 CONFRONTING AIDS
more than 5 million pregnancies occur every year, in some proportion of
which women will be tested and counseled.
· The most successful education programs to date (exemplified by the
experience in San Francisco) have occurred within small geographic areas
where there are educated homosexuals. Programs for other groups, such
as IV drug users, will face more difficult problems of access and
motivation; they will therefore probably require more resources per
capita. In addition, large groups such as sexually active heterosexuals
who have had a number of partners will need to be reached and motivated
to adopt risk-reducing behaviors.
· Newspaper, radio, and particularly television advertisements are
influential means of communicating information to a mass audience, but
the use of these media is expensive. One page of advertising in a major
newspaper can cost around $25,000 per day, and a minute of national
television time can cost between $60,000 and $400,000. Consequently, to
influence the behaviors affecting HIV transmission, policymakers must
begin to contemplate expenditures similar to those made by private sector
companies to influence behavior" for instance, $30 million to introduce a
new camera, or $50 million to $60 million to advertise a new detergent.
Furthermore, advertising campaigns at these levels are judged successful
even when they produce relatively modest shifts in behavior. The efforts
needed to influence the behaviors that spread HIV will have to be greater
and more sustained (Fineberg, 19861.
California has moved earlier than most states to provide funds for AIDS
prevention, undoubtedly because the need for such actions has been
reinforced by the occurrence of cases. (It is hoped that other states will
not delay launching prevention efforts until they have the same stimulus.)
Current annual state expenditures for AIDS prevention efforts in Califor-
nia average 65 cents per capita, and in San Francisco such expenditures
approximate $5 per capita (D. P. Francis, California State Department of
Health Services, personal communication, 19861. Extrapolated on a
population basis for the entire United States, these figures would amount
to state expenditures nationwide of approximately $150 million and $1
billion, respectively. The committee believes that the desirable level of
state expenditures probably falls between these two figures. It bases this
conclusion on the fact that although San Francisco has a sizable concen-
tration of homosexual men, this group does not unduly bias the California
population as a whole. In addition, the need for active prevention of
spread among heterosexuals is only now becoming recognized, and
efforts need to be directed to this group. The risk to heterosexuals is
greater in areas of high prevalence, but prevention efforts will need to be
relatively uniform nationwide.
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ALTERING THE COURSE OF THE EPIDEMIC 133
The committee also believes that expenditures just from the states of
the size mentioned above will be inadequate for a number of reasons. For
one, the effectiveness of the educational message will be reinforced if it is
delivered from a variety of agencies in a variety of settings. Thus, federal
efforts should complement those of the states, which in turn should
complement the local efforts of employers and private groups. Funds
should be provided for these efforts at each level.
Recommendation
For the reasons listed above, the committee believes that a total
national expenditure based on a per capita prevention expenditure
roughly similar to that made in San Francisco by the State of California is
a necessary goal. This suggests the need for approximately $1 billion
annually for education and other public health expenditures within a few
years. A major portion of this total should come from federal sources,
because only national agencies are in position to launch coordinated
efforts commensurate with the potential size of the problem.
The process of designing and implementing educational interventions to
reduce the risk of HIV transmission, followed by evaluations of their
effectiveness, will enable policymakers to evaluate over the next year or
two the magnitude of effort needed to bring about a drastic reduction in
the spread of HIV infection. It is possible that the amounts envisaged by
the committee will not be sufficient to stem increases in the prevalence of
infections, especially since some of the groups at risk are difficult to reach
with conventional approaches and since, despite the expenditures noted
above, the infection continues to spread in areas such as San Francisco,
though at a reduced rate. More funding for prevention measures will be
necessary if those envisaged here for 1990 do not prove sufficiently great
to slow the epidemic.
DISCRIMINATION AND AIDS
The stigma associated with AIDS has led to unfortunate instances of
discrimination in employment, housing, and access to social services.
Sometimes this discrimination involves persons with AIDS or ARC-
sufferers are discriminated against by those who misunderstand the
modes of transmission and harbor unfounded fear of the risk of infection
from mere casual contact. In other cases disputes arise because of
underlying prejudices about those at risk for AIDS (for example, over
services for IV drug users or in using AIDS to rationalize antihomosexual
bias). Although the precise extent of such occurrences is difficult to
document, a recent report by the New York Commission on Human
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134 CONFRONTING AIDS
Rights found AIDS as the basis of a number of allegations of anti-
homosexual bias and violence (City of New York Commission on Human
Rights, 1985~.
Legal disputes involving AIDS are arising constantly (Curran et al.,
1986; Lambda Legal Defense and Education Fund, Inc., 1984; Tarr,
19851. One report on the mediation of AIDS disputes used the number of
requests to legal aid services in high-incidence areas as a barometer of the
social disquiet occasioned by AIDS (Stein, 19861. In 1985 the San
Francisco Bay Area Lawyers for Individual Freedom (BALIF) received
1,400 requests for legal assistance. Gay Men's Health Crisis (GMHC) has
more than 3,000 pending requests for legal consultation and expects 1,000
new queries throughout 1986. GMHC's title belies its present ecumenical
nature: 30 percent of its requests were from the heterosexual community.
Questions may arise in the workplace about testing prospective em-
ployees for infection with HIV; about hiring or firing someone who has
AIDS, ARC, or is seropositive; or about the refusal of employees to work
alongside or to provide services to someone who has AIDS (Leonard,
1985).
A number of major employers, led by a group in the San Francisco
area, have begun to establish programs to educate employees about the
risk of AIDS, along with policies clarifying the status of persons with
AIDS or ARC in the workplace.
Several states have enacted laws of various types to prevent discrimi-
nation against persons with AIDS. Several of the laws also cover
seropositive persons on the same basis. These laws, statutes, and city
ordinances generally deal with discrimination in employment and hous-
ing. Some of the laws prevent employers from requiring HIV testing of
employees and job applicants. In several jurisdictions, the state antidis-
crimination commission or agency has designated AIDS and HIV infec-
tion as protected under their programs.
On the federal level, one federal circuit court has found infectious
diseases, and by implication AIDS and possibly HIV infection, covered
under federal law preventing discrimination against the handicapped
(Arline v. School Board of Nassau County, 1985~. The U.S. Supreme
Court has accepted this decision for review, and a ruling on this issue can
be expected soon. The statute in question, the Rehabilitation Act of 1973
(U.S. Congress, 1973), provides that no otherwise-qualified individual
shall, solely by virtue of his or her handicapping condition, be excluded
from participation in or from receiving benefit under any program
receiving federal financial assistance. (The statute does not cover privet-e
businesses or schools.) A recent federal memorandum from the Office of
Legal Counsel of the U.S. Department of Justice takes the position that
discrimination against persons suffering from the disabling effects of
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ALTERING THE COURSE OF THE EPIDEMIC )35
AIDS would violate the federal law, but that firing or refusing to hire
someone because of fear of the spread of AIDS would not be prohibited,
even if unfounded.
Recommendations
· The committee believes that discrimination against persons who have
AIDS or who are infected by HIV is not justified, and it encourages and
supports laws prohibiting discrimination in employment and housing as
formal expressions of public policy. The committee also supports a
federal policy to include AIDS as a handicapping condition under the
federal law prohibiting improper discrimination against the handicapped.
· Any form, direct or indirect, of discrimination against vulnerable
high-risk groups for AIDS should be discouraged and prohibited by state
legislation and, where appropriate, by federal regulation and statute. In a
positive manner, participation by representatives of high-risk groups in
policymaking bodies should be encouraged where appropriate and prac-
ticable, and the help of organizations representing high-risk groups should
be enlisted for public service programs such as health education, personal
counseling, and hospital and home treatment services.
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Representative terms from entire chapter:
hiv infection
