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4
Altering the Course of the Epidemic
AIDS and the HIV epidemic present a fundamental challenge to
"guardians" of the public health. This chapter discusses the range of
possible public health interventions, the resources and talents that will be
necessary to implement them, and the hallmarks of programs that are
both responsive to the crisis and consonant with a respect for human
dignity and individual freedom. It also highlights the needs of IV drug
abusers and several problem areas that will require more attention, such
as the impact of AIDS on minorities.
FEATURES OF PUBLIC HEALTH PROGRAMS
Certain properties of the HIV epidemic distinguish it from other dread
diseases and prompt special concerns in fashioning a public health
response. The incubation period of AIDS may be a number of years;
asymptomatic carriers of the virus appear to be infectious for the
remainder of their lives. Public health programs are based on the
presumption that this is so. AIDS is also a disease of behaviors-
generally private, consensual behaviors such as sexual intercourse and IV
drug abuse. Finally, the groups at greatest risk of infection were already
subject to social stigma and prejudice; that vulnerability entails unique
considerations for public health officials (Walters, 1988~.
In considering how to fashion interventions to confront the HIV
epidemic, it is useful to review the conceptual framework for the
operation of public health programs. They are frequently classified by the
61
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62 CONFRONTING AIDS: UPDATE 1988
level of prevention they are intended to provide: primary, secondary, or
tertiary; that is, by efforts to prevent the problem altogether, to detect the
problem early and provide definitive treatment, or to avert or mitigate the
long-term consequences of the problem. Programs organized to combat the
HIV epidemic can be considered in that manner, although some program
activities may have an effect on more than one type of prevention.
Primary prevention, which is aimed at preventing new cases of infec-
tion, focuses on three groups. First, there are those who have not begun
to engage in high-risk behaviors, principally young persons who are not
sexually active or who do not abuse drugs. Activities may be directed at
preparing these individuals to avoid risk behavior entirely or to learn safer
practices prior to initiation. Second, there are those who engage in
high-risk behavior but who have not yet been infected. These individuals
may be approached to stop the risk behavior or to learn safer practices.
Finally, those persons who are currently infected can be supported in
practices that minimize the opportunities for transmitting the virus to
uninfected persons.
Secondary and tertiary levels of prevention are harder to define in the
absence of definitive treatment for HIV infection. Current research
indicates that there is a role for early case finding, not only for the
contribution early identification can make to primary prevention but also
to allow for medical supervision of the asymptomatic individual and for
medical care of the symptomatic person. As additional treatment methods
are developed, it may be possible to define a tertiary prevention level.
The committee believes that the HIV epidemic should prompt a reexam-
ination of the fiscal and institutional barriers that impede elective public
health efforts in all program areas related to the control of HIV infection.
Public health efforts to combat the spread of HIV infection are not limited
to programs with "AIDS" in their titles. Sexually transmitted disease
clinics (Aral et al., 1986; Solomon and DeJong, 1986), drug abuse
treatment centers (Carlson and McClellan, 1987), private physicians'
offices (Koop, 1987b), hospitals, and other health care clinics are all
appropriate places for HIV education, counseling, and testing. In fact,
many of the programs designed to combat gonorrhea, syphilis, chlamydia,
chancroid, and other sexually transmitted diseases will themselves have a
direct bearing on the AIDS epidemic, as will efforts to combat drug abuse.
The continued reprogramming of funds from these activities to AIDS
programs may have a deleterious net impact on the public health.
ANTIDISCRIMINATION PROTECTIONS
Evidence accumulated since the publication of Confronting AIDS gives
us further confidence in our conclusions about the modes of HIV
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ALTERING THE COURSE OF THE EPIDEMIC 63
transmission (see Chapter 2~. There are no grounds for discriminating
against persons with AIDS or HIV infection because of fears that they
pose a health risk in the workplace or in housing. The fear of AIDS can
be a healthy and useful reaction when it helps people avoid behaviors that
put them at risk of contracting HIV infection. Unreasonable fears can
have a debilitating effect on both the individual and the body politic
(Eisenberg, 1986~.
The commute believes that the fear of do nation is a major constraint
to the wide acceptance of many potentially effective public health measures.
Public health programs will be most effective if they are accompanied by
clear and strict sanctions to prevent unwarranted discrimination against
those who are infected with HIV or who are at risk of infection.
In many instances, discrimination has thwarted access to health care
(hospitals, nursing homes, dental care, and private physicians' services),
employment, housing, education, health insurance, and even funeral
services (Rapoport and Parry, 1987; Dickens, 19881.
A few systematic studies have attempted to determine the range and
scope of AIDS-related discrimination and legal protections (National Gay
Rights Advocates, 1986; ASTHO, 19871. Although it is impossible to tell
whether AlDS-related discrimination has paralleled the rise in AIDS
cases, dramatic anecdotal accounts reflect problems that increasingly
confront those with AIDS or with lesser manifestations of HIV infection,
those who are without symptoms but are seropositive, or those who are
merely members of risk groups. For example, an apparent rise in violence
against gays has been attributed to fears of AIDS (NGLTF, 1988~.
Many court cases have been filed involving victims of AIDS-related
discrimination in a variety of settings (Boorstin, 1987), and complaints
have been docketed with state and local human rights commissions.
Courts have ordered schools to admit HlV-infected students and have
allowed teachers with AIDS to remain on duty in the classroom. It is
likely that many other episodes of discrimination are being resolved
privately, or they may simply not be pursued by AIDS patients who are
too debilitated to press their claims (Ansberry, 19874.
Protection from irrational discrimination is a hallowed function of U.S.
law (Parmet, 19871. In particular, Section 504 of the Federal Rehabilita-
tion Act of 1973 specifically proscribes discrimination against '`otherwise
qualified" disabled or handicapped individuals in programs receiving
federal funds. Although persons with AIDS may readily establish their
disabled status, the legal posture of those who are seropositive but
asymptomatic may be unclear. These individuals may not be considered
handicapped under common law or statutory definitions although they
may still face discrimination and threats to their livelihood, health, or
residence.
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64 CONFRONTING AIDS: UPDATE 1988
A case decided by the U.S. Supreme Court since the publication of
Confronting AIDS involving a teacher with tuberculosis would seem
clearly to extend the protections of Section 504 to HIV-infected individ-
uals who display symptoms. Yet in a footnote, the Court explicitly
reserved judgment about the status of asymptomatic carriers of infectious
diseases (School Board of Nassau County, Florida v. Arline, 107 U.S.
1129, 1987~. However, the Ninth Circuit Court of Appeals has recently
held that Section 504 specifically covers AIDS in finding that a public
school teacher with AIDS could not be dismissed because of his illness
(Chalk v. U.S. District Court for the Central District of California, No.
87-6418, 840 F.2 701, February 26, 19881.
The committee supports the enactment of a federal statute specifically
designed to prevent discrimination on the basis of HIV infection or AIDS.
The committee also supports the consideration by states and localities of
statutes and ordinances designed to prevent discrimination in employ-
ment, education, housing, health insurance, or the receipt of health care
services. However, the committee does not support measures that would
abrogate insurers' rights to distinguish among applicants for life insur-
ance. States should consider whether their handicapped antidiscrimina-
tion, civil rights, education, and insurance laws sufficiently address HIV
infection and AIDS. Executive orders and administrative regulations are
other possible avenues of reform. It may also be appropriate to review the
time it takes to consider claims—if discrimination charges take years to
resolve, many AIDS patients may die before their rights can be upheld.
EDUCATION
Educational efforts to foster and sustain behavioral change remain the
only presently available means to stem the spread of HIV infection.
This statement is no less true today than it was in 1986 when
Confronting AIDS was published. At that time, IOM/NAS lamented the
failure of the United States to mount an aggressive, effective AIDS
education campaign, calling such efforts woefully inadequate. The past 2
years, on the other hand, have seen many state and local efforts to
educate the general public and those in high-risk groups, as well as a
nationwide education campaign funded by the federal government and
directed by CDC. These significant efforts are laudable. Nevertheless,
formidable obstacles to effective AIDS education remain. Merely com-
municating information about the risks of infection will not suffice;
individuals must also have the motivation and means to translate an
awareness of risk into changes in fundamental areas of human behavior.
The committee believes that the urgency of the HIV epidemic warrants
a multiplicity of educational efforts, including the use of paid advertising
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ALTERING THE COURSE OF THE EPIDEMIC 65
on television or in other media. Currently, a number of federal entities,
including the armed forces, the postal service, Amtrak, and the mint use
paid advertising—over $300 million worth each year. Administrative
restrictions from the Department of Health and Human Services (HHS)
preclude CDC from doing the same. The committee is aware of concerns
about paying for advertising: that paid advertising for AIDS could have a
detrimental effect on the amount of time or space donated for public
service announcements in general. Nevertheless, it is doubtful that public
service announcements are adequate to the task of increasing public
awareness of the risks of HIV infection and encouraging behavioral
change. The gravity of the HIV epidemic is such that CDC, like other
government entities, should be allowed to purchase advertising time and
space and should be supplied with the funds to do so. Any administrative
regulations that preclude such actions should be withdrawn immediately.
Content of the Message
The implementation of AIDS education programs has continued to
founder over questions involving their content. Although a great deal is
known about the modes of transmission of the virus, much of this
information is difficult to convey. Only the scientist or physician trained
in epidemiology may be able to appreciate the fact that HIV is at once
fragile and deadly unable to live outside of the body for very long and
yet lethal once it is introduced by sexual intercourse or through the
bloodstream. Yet it is essential that educational programs convey to the
public this scientifically accurate message. Moreover, these efforts should
be aimed beyond those in what traditionally have become identified as
high-risk groups. The further spread of HIV is sufficiently daunting to
warrant educational efforts to promote personal caution and prudent
behaviors on the part of all sexually active persons.
The linking of HIV transmission to sexual behavior and IV drug abuse
raises concerns about the propriety of the educational message, concerns
that have not abated since the publication of Confronting AIDS. Those
who view homosexual relations, heterosexual relations outside of mar-
riage, or IV drug abuse as immoral may believe that frank, straightfor-
ward educational or public health programs encourage such activities.
These concerns continue to stymie educational efforts (Booth, 1987b).
The committee believes that government at all levels, as well as private
sources, should continue to fund ellective, factual educational programs
designed to foster behavioral change. This may mean supporting AIDS
education efforts that contain explicit, practical, and perhaps graphic
advice targeted at specific audiences about safer sexual practices and how
to avoid the dangers of shared needles and syringes.
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66 CONFRONTING AIDS: UPDATE 1988
Confronting AIDS expressed skepticism about the approach taken by
CDC in establishing local boards to review the degree of explicitness of
AIDS educational materials (the so-called "dirty words" issue) because
of concern that such a process might keep explicit information from those
for whom it would be most beneficial. Efforts to stifle candid materials
that discuss safer sexual practices and that are targeted at appropriate
audiences may take a toll in human lives. In 1987 an amendment to the
HHS appropriations bill (P.L. 100-202, Title 5, Sec. 514, 1988) passed the
House and Senate with overwhelming majorities. It precludes the use of
CDC funds for educational materials "that promote or encourage, directly,
homosexual sexual activities" (Booth, 1987a). Explicit information on the
risks associated with gay sex and the way those risks can be minimized does
not "promote or encourage" homosexual activities. Its sole function is to
help homosexuals avoid an illness that endangers their lives and those of
their sexual partners and costs the nation billions of dollars.
School-Based Education
The committee believes that school-based educational programs are an
essential part of efforts to increase awareness of the risk of HIV and to
combat the spread of infection. Ideally, such education would begin at a
young age, with a level of detail and explicitness appropriate for the age
group. Education about sexuality and drug abuse, including specific
information about HIV, should be part of a systematic and comprehen-
sive program of health education.
Many states have initiated some kind of AIDS education program. At
the time of publication of Confronting AIDS, nine states had statutes that
specifically allowed or mandated public school classroom teaching about
sexually transmitted diseases. Since then, at least nine more states have
passed similar statutes, some of which specifically address AIDS (Asso-
ciated Press, 19881.
A number of states have also acted in the absence of specific legislation.
By early 1987 half of the nation's largest school districts had instituted
some kind of HIV education program. Unfortunately, in many states,
HIV education proposals have hit formidable roadblocks. The locus of
responsibility for shaping the content of AIDS curricula remains a highly
charged issue, reflecting historical tensions between state and local
control of education. State mandates also vary widely as to the degree of
parental control that may be permitted. Some states have provisions that
allow parents or guardians to inspect curricular material in advance or to
exempt their children from the courses (Koop, 1987a).
Colleges are another key site for AIDS prevention and education
efforts. Because of the lengthy incubation period of the virus and the
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ALTERING THE COURSE OF THE EPIDEMIC 67
timing of the onset of sexual (and drug abuse) activity, there may be few
cases of fulminant AIDS among college students. Nevertheless, many
may be infected (Hein, 19871. Recent reviews of college-level activities
have identified the college campus as a particular gap in AIDS education
efforts (Biemiller, 1987; Caruso and Haig, 19871.
Within the college setting, there are many opportunities for reaching
students with AIDS prevention messages (Fraser, 19871. Dormitory
advisors, health centers, and peer groups are beginning to offer HIV
counseling on some campuses. More campuses are beginning to offer
serologic testing or, if not, to advertise off-campus services. At some
colleges, condoms are available through clinics, bookstores, or dormito-
ries. A few schools are also carefully evaluating the effectiveness of
. .
various program mixes.
Effect of Educational Programs
Awareness of AIDS is widespread. The deaths from AIDS of a number
of celebrities have rendered the disease less of an abstraction. During the
12-month period ending October 1987, the number of Americans who
reported that they knew someone with AIDS grew from 4 to 6 percent
(New York Times, 1988~. The ways in which HIV is spread are also widely
known. According to the National Health Interview Survey of August
1987, 92 percent of the public know that AIDS can be contracted by
having sex with someone who is infected; more than 80 percent believe
that condoms are a somewhat or very effective means of avoiding
infection. Unfortunately, serious misunderstandings persist: 25 percent of
the general public believe incorrectly that HIV can be acquired by
donating blood; 38 percent believe incorrectly that mosquitoes are a likely
mode of transmission; and 21 percent believe incorrectly that there is a
risk of infection from merely working near someone with AIDS (Dawson
et al., 19871.
The committee believes that more studies are needed to determine the
effects of various types of educational campaigns on specific populations.
For example, there have been few systematic assessments of the impact
of AIDS education programs or media efforts on the behavior of hetero-
sexuals (as opposed to the impact on their beliefs or understanding). The
National Research Council's CBASSE study on AIDS research and the
behavioral, social, and statistical sciences (see Chapter 3) will explore the
effectiveness of educational interventions in depth. The committee's report,
to be released in the fall of 1988, will present general principles of health
behavior and recommendations about AIDS intervention strategies.
Especially critical are educational efforts aimed at persons at risk
within minority populations. The prevalence of AIDS in the black and
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68 CONFRONTING AIDS: UPDATE 1988
Hispanic communities is substantially higher than the prevalence among
whites. Culturally specific programs to address the needs of minority
communities, especially in the inner cities, are of paramount importance.
In August 1987 CDC sponsored a conference on minorities and AIDS, the
outgrowth of which has been a number of new efforts in this regard. A
second such conference is planned for the summer of 1988.
Gay and Bisexual Men
Community-based programs in the two cities hardest hit by the epi-
demic, New York and San Francisco, are the oldest examples of
aggressive HIV educational efforts. These programs began at the grass
roots level with privately raised funds and volunteer support from many
in the gay community. Today, they feature a multipronged attack funded
by a variety of government and private sources and include media
campaigns, peer counseling, literature distribution, and support groups.
In addition, local efforts in cities such as New York, Boston, San
Francisco, and Los Angeles have been expanded to the state level. It has
been shown that substantial changes in behavior can be effected among
gay and bisexual men in areas with firmly established gay social and
political structures (Winkelstein et al., 1987~.
Unfortunately, even the dramatic changes that have occurred in San
Francisco and New York are faint reassurance when half or more of the
male homosexual population may already be infected (Fineberg, 1988~.
The high rates of seropositivity among gay men in these cities and the
widespread appreciation of the risk posed by AIDS are not sufficient
reasons to abandon educational efforts for homosexual men or curtail
local, state, or federal government funding support, despite the claims of
some critics (Kilpatrick, 19871. The mere understanding that one may be
at risk will not necessarily translate into sustained behavioral change in
the absence of concerted educational and counseling efforts.
The challenge also remains to educate and inculcate behavioral change
among gay men outside of urban areas with active gay social communities
and among men who may not see themselves as belonging to the gay
community but who nevertheless engage in homosexual behavior that
puts them at risk. The committee also believes it is essential to develop
effective methods for reaching youth who are just becoming homosexually
active.
AIDS and Condoms
Condoms are a generally effective means of preventing the spread of
HIV infection and a number of other sexually transmitted diseases.
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ALTERING THE COURSE OF THE EPIDEMIC 69
Studies of the effectiveness of condoms as a barrier against HIV and other
viral agents have resulted in recommendations for the use of latex (as
opposed to natural membrane) condoms, supplemented by creams or jelly
containing nonoxynol 9, a proven virucidal agent (Rietmeijer et al., 1988~.
Condoms are regulated as medical devices under the Federal Food, Drug,
and Cosmetics Act, and the Food and Drug Administration (FDA) has
recently moved to ensure the adequacy of condom manufacture. FDA
batch testing and manufacturer quality control programs have resulted on
occasion in product recalls.
Ensuring that condoms meet quality specifications is only an initial
step, however. The occasional failure of condoms is more likely to be
attributable to "user failure" than to "product failure" (CDC, 1988a).
Greater familiarity with condom use should be fostered to promote a
willingness to incorporate them routinely into heterosexual and homosex-
ual intercourse. Health care professionals need to advise their patients in
detail about how to use condoms. CDC has issued a detailed review of the
role of condoms in the prevention of sexually transmitted diseases
including detailed guidelines for their use (CDC, 1988a).
One obstacle to effective AIDS education has been the long-standing
refusal of the media to accept commercial condom advertising in the
belief it would offend a substantial portion of their audience. In 1987 some
companies relented, including the New York Times, Newsweek, and
Time, Inc. (Aiken, 19871. These changes in policy were accompanied by
the proviso that the advertising message stress the role of condoms in
disease prevention rather than in contraception. Although a few local
television affiliates have broken ranks and agreed to accept condom
advertising, the networks have continued to balk. Many have pointed out
the irony of the numerous steamy sexual encounters that take place on
daytime TV soap operas and during prime time with seldom even a
mention of the need to exercise precautions.
The committee believes that there must be continued attention to the
development of policies to foster the use of condoms. Allowing condoms
to be advertised through the major media, increasing the number and
types of outlets for their sale and distribution, and taking steps to
ensure their quality are among the measures the committee has consid-
ered. In addition, continued education is needed to ensure their
effective use.
HIV ANTIBODY SCREENING AND TESTING
The proper role of tests for HIV infection has continued to be one of the
most controversial AIDS-related public policy issues. Arguments for and
against testing (of individuals) and screening (of populations) depend
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70 CONFRONTING AIDS: UPDATE eggs
largely on the circumstances in which the tests are to be applied. In order
to assess the utility of testing or screening in any particular setting, it is
essential that the purpose of such activities be clearly spelled out. A few
possible rationales related to public health and medical care include the
following:
· HIV antibody (and, possibly in the future, antigen) screening is
essential to ensure the safety of donated blood, tissues, and organs.
· Antibody screening is critical in surveillance and planning to obtain
geographic and demographic data about the spread of disease. These data
are needed to plan targeted public health efforts and earmark patient care
services.
· Increased antibody testing is also an adjunct to patient care. The
advent of zidovudine (i.e., AZT) trials in asymptomatic individuals is one
additional reason asymptomatic persons at risk might wish to know their
status. In patients with new symptoms that suggest HIV infection, HIV
antibody testing should be part of a diagnostic workup.
· Testing and counseling may also help foster individual behavioral
change. Testing may be especially useful to women of childbearing years
confronted with reproductive decisions.
· HIV testing may be useful in identifying index cases, which will allow
the identification of contacts and others who may have been exposed,
such as female partners of bisexual men or recipients of contaminated
blood products. Testing will ascertain whether exposed persons have
become infected.
· Screening has also been proposed as an adjunct to infection control
procedures in hospitals to help ensure that appropriate precautions are
exercised when invasive procedures are performed on seropositive pa-
tients.
These varied rationales offer a backdrop against which to examine the
array of proposals for more widespread testing. Yet a number of other
factors must also be taken into account: the social and psychological
ramifications of the test, the expense of testing and the labor-intensive
nature of counseling, the accuracy of the test in terms of the number of
false-positive and false-negative results (in both the ideal and the "real
world" laboratory settings), and the degree to which test information
can be protected from unauthorized access (Barry et al., 1987~. At-
tributes of the population to be screened are also critical factors. The
degree to which a population is at risk and the reservoir of infection
within the population to be screened are further considerations. Insti-
tutionalized populations pose special concerns (Gostin and Curran,
1987~.
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ALTERING THE COURSE OF THE EPIDEMIC 7~
Technical Considerations
Tests to measure the development of antibodies against HIV have been
commercially available since the spring of 1985. Eight different tests have
been licensed for antibody detection, including seven enzyme-linked
immunoassay (ELISA) tests and one Western blot test kit. As of 1987
these tests had been approved by FDA for clinical diagnostic use in
addition to their original purpose of screening the blood supply. Since
their introduction, a number of manufacturing modifications have been
approved to bolster the sensitivity (the test's performance among infected
individuals), specificity (the test's performance among uninfected individ-
uals), and reproducibility of test results.
The accuracy of currently marketed HIV antibody tests compares quite
favorably with other medical diagnostic tests and has been borne out by
experience in the nation's two largest screening programs: blood banks
and the military.
The more widespread testing programs that have been proposed under
a variety of public and private auspices have prompted concerns about
the ability to replicate the military's record of testing accuracy (Burke,
1987~. The risk of false-positive results (which is greater in the screening
of low-prevalence populations) and the danger of imposing an unneces-
sary burden of fear and stigma on uninfected individuals have been
sources of misgivings about expanding screening programs (Okie, 1987~.
The issue of the number of false test results that might have to be endured
to achieve the intended public health result of screening programs
presents ethical and political as well as technical questions (Meyer and
Pauker, 19871.
The committee believes the federal government should give more atten-
tion to establishing standards for laboratory proficiency in HIV antibody
testing, setting criteria for interpreting assays, and instituting quality
assurance procedures. When appropriate, FDA should continue to move
rapidly to license new diagnostic tests. Additional resources should be
provided to allow state and local governments to expand their testing
capabilities, shorten waiting periods, and improve the quality of test
results.
Informed Consent and Confidentiality
In addition to ensuring that tests for infection with HIV are accurate,
properly confirmed, and conducted by experienced, proficient laborato-
ries, other essential requisites of testing and screening (in addition to
counseling) include securing the consent of the individual to be tested and
maintaining the confidentiality of the results.
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82 CONFRONTING AIDS: UPDATE 1988
The feasibility of contact tracing among high-risk groups in areas with
a high prevalence of HIV infection for example, among gay men in
urban settings such as San Francisco and New York City has been
viewed skeptically. Those in high-risk groups may know already what
behaviors put them at risk; they would not, however, know whether or
not they had become infected.
The committee believes that voluntary contact notification programs can
be useful in preventing the spread of HIV infection. Trained counselors in
local public health departments have experience in notifying contacts of
patients with other venereal diseases; the ethos of client confidentiality is
highly valued. Contact notification programs provide for the notification
of sexual or drug abuse partners of infected individuals who are afraid,
embarrassed, or unwilling to notify partners themselves. The health
department can notify the contact without revealing the identity of the
index case. These programs may be of greatest value when directed at
those who otherwise might be unaware they had risked infection. For
example, San Francisco has pursued a limited program to notify female
contacts of bisexual men (Echenberg, 19871.
Reporting of HIV-Seropositive Cases
Approximately a dozen states now require the reporting of seroposi-
tivity. Several rationales have been offered for this requirement. First, the
reporting of all seropositive test results broadens the state's information
base about the prevalence of infection in the state. Second, reporting
seropositive index cases facilitates the contact notification process.
Third, reporting HIV infection is consistent with the view that the disease
is really a continuum from HIV infection to AIDS. Finally, treating HIV
infection and AIDS like other reportable diseases helps to dissipate some
of the stigma associated with HIV infection and thus "normalize" the
disease.
Although the committee recognizes these arguments, it believes that
mandatory reporting of seropositive test results with identifiers should not
be required at this time. Contact notification does not necessarily
demand the reporting of seropositive cases with identifiers. Further-
more, for determining seroprevalence rates, well-designed population
surveillance studies are more useful than ad hoc collections of cases in
which the size of the underlying populations is unknown. The commit-
tee believes that the effect of mandatory reporting may be to discourage
individuals from seeking voluntary testing, a cost that does not justify
its potential benefits. Neither are the arguments about treating HIV
infection like other diseases sufficiently compelling to risk deterring
individuals from being tested.
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ALTERING THE COURSE OF THE EPIDEMIC 83
Personal Control Measures
Since the publication of Confronting AIDS, there has been increasing
attention given to measures aimed at controlling the behavior implicated
in the spread of HIV infection, whether through isolation or quarantine,
criminal penalties, or civil liability for the intentional transmission of the
virus. Scores of criminal cases have been filed involving intentional or
reckless attempts to transmit HIV through sexual conduct, giving blood,
spitting, or biting. Since the HIV epidemic first appeared, a few states,
including Colorado, Connecticut, Indiana, and Florida, have even en-
acted statutes providing for the isolation of infectious disease carriers.
The problems with many of these measures are manifest: it is difficult
to determine intent and to predict with certainty who among the infected
are dangerous to others; enforcing prudent behavior is difficult when
private sexual activity is involved; the incubation period of the virus
makes the determination of causation problematic; and only the poorest
and most disenfranchised individuals are likely to come within the bounds
of personal control measures (Field and Sullivan, 1987; Gostin, 1987a).
Despite these difficulties, if it can be demonstrated that a person know-
ingly or recklessly transmits HIV to unwitting partners, there is no reason
why such an individual should be beyond the reach of the law. There have
been a number of celebrated cases of "recalcitrant" individuals who
refused to conform in their behavior to the advice of health officials. (For
example, "Patient Zero" was the centerpiece of a popular chronicle of
the AIDS epidemic [Shilts, 19871.)
The use of criminal law sanctions or legal provisions for isolation will
not address the core problems of the spread of HIV infection; neverthe-
less, the inability or unwillingness of authorities to deal with such hard
cases may undermine confidence in those who are entrusted with the
protection of the public health. It is unclear how the numerous laws
already on the books would apply to HIV and AIDS, given some of the
properties (especially the incubation period of the virus) that distinguish
AIDS from other sexually transmitted diseases. Indeed, such laws may be
ineffective, protecting neither the public health nor civil liberties. The
committee believes that there may be rare instances in which the state
should act to restrict the personal liberties of some infected individuals, and
states should review their statutes to ensure that such authority exists. Legal
measures to restrict personal liberty should be used only when the
following conditions have been met: (1) the individual is infected; (2) the
individual is putting others at risk; (3) voluntary efforts to prevent the
individual from jeopardizing others have failed; and (4) the restrictive
measure is the least restrictive alternative available. Furthermore, restric-
tive measures should also entail the provision of intensive counseling, job
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84 CONFRONTING AIDS: UPDATE 1988
training, and other supportive actions designed to induce behavior
change. The time involved should be short and clearly limited.
AIDS AND IV DRUG ABUSE
Confronting AIDS highlighted the needs of IV drug abusers and noted
that this group had not received as much media attention as other risk
groups. This situation is changing with recognition of the looming danger
that IV drug abuse poses for the user, his or her needle-sharing or sexual
partner, and his or her offspring (Des Jarlais et al., 1988~. IV drug abusers
are the second largest group of AIDS sufferers; they are the persons most
likely to transmit HIV to heterosexual partners. There are an estimated
1.2 million drug abusers in the United States who inject drugs, including
heroin and, increasingly, cocaine. Approximately 30 percent of these drug
abusers are women.
Three-quarters of the IV drug-related AIDS cases come from the New
York City metropolitan area, where seroprevalence among IV drug
abusers is estimated to be anywhere from 50 to 60 percent (Des Jarlais and
Friedman, 1987; Lange et al., 19881. Retrospective reviews of the medical
records of drug-related deaths in New York City have uncovered many
more deaths (for example, from bacterial endocarditis and tuberculosis)
than were originally believed to be related to HIV. The link of IV drug
abuse to AIDS is of particular concern to inner-city minority communi-
ties, particularly blacks and Hispanics (Ginzburg, 19871.
The committee believes that the gross inadequacy of federal efforts to
reduce HIV transmission among IV drug abusers, when considered in
relation to the scope and implications of such transmission, is now the most
serious deficiency in current efforts to control HIV infection in the United
States. Correcting this deficiency will require special efforts directed
particularly but not exclusively at black and Hispanic populations at risk
in New York City and New Jersey (Brown et al., 1987; Rogers and
Williams, 19871.
The committee supports a number of strategies in the short and long
terms to prevent drug abuse and to avoid the risk of HIV infection when
such prevention is not possible. The committee urges a greater commit-
ment on the part of federal, state, and local governments to the rapid,
large-scale expansion of drug abuse treatment slots, both in residential
drug-free treatment centers and in methadone maintenance facilities, to
offer immediate access to all addicts who request treatment. Without
substantially increased funding, however, treatment on demand is a
laudable yet distant goal. In January 1988 there were 29,400 methadone
maintenance treatment slots for an estimated 200,000 IV drug abusers in
New York City. More than 60 percent of those slots were taken by
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ALTERING THE COURSE OF THE EPIDEMIC 85
long-term clients who had been on methadone for 2 or more years
(Thomas, 19881. Official waiting lists contain at least a thousand names;
thousands of others are assuredly deterred by the prospect of a wait of a
month or more.
Creating and funding more treatment slots will entail training and hiring
more counselors and physicians as well as securing more office space, but
these are not the only impediments to more ready access to methadone
maintenance. Much of the historical development of methadone clinics
has involved philosophical debates over the medical versus moral models
of treatment and the competing merits of methadone versus drug-free
programs (Newman, 19871. The HIV epidemic has quieted some of this
debate, and there has been more willingness to loosen some of the
restrictions that accompany the dispensing of methadone. In October
1987 the National Institute on Drug Abuse and FDA proposed lifting the
requirement that methadone clinics hire a counselor for every 50 patients.
In December 1987 the American Medical Association also recommended
loosening enrollment restrictions (Thomas, 19881. Others have urged that
physicians in private practice be allowed to prescribe methadone.
Intervention Innovations
The committee supports the increased use of former IV drug abusers as
community health workers to provide "one-on-one" risk reduction coun-
seling and materials to drug abusers who are not in treatment, including
instruction in the use of bleach to sterilize injection equipment. This
program points up one important requirement of effective intervention
programs they must reach beyond treatment centers, as no more than 20
percent of IV drug abusers attend treatment programs in any given year.
In San Francisco, former drug abusers and experienced drug counse-
lors distributed thousands of 1-ounce vials of bleach, accompanied by
instructions for addicts on how to clean "works" (drug injection equip-
ment). A study by an independent research group surveyed 387 addicts at
four sites in the San Francisco area. Before the program, only 3 percent
reported using bleach to clean needles and syringes, although 34 percent
used "possibly safe" methods such as boiling syringes or rinsing them
with alcohol or hydrogen peroxide. One year later, the results of a survey
of 440 addicts showed that 68 percent used bleach to clean their
equipment, while another ~ percent used "possibly safe" techniques
(Watters, 19881. According to one of the architects of the program, "the
outreach workers, and not the bleach bottles are the linchpins of our
program; their street wise skills are essential to empower the IVDUs
Lintravenous drug users] to take health maintenance into their own hands,
and to reinforce adherence to risk-avoidance measures" (letter to R.
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86 CONFRONTING AIDS: UPDATE 1988
Widdus from J. A. Newmeyer, Haight-Ashbury Free Medical Clinic, San
Francisco, October 13, 1987~.
New Jersey has designed a coupon program using vouchers that entitle
prompt entry into drug treatment slots. This policy may allow more
precise targeting of the IV drug abuser at greatest risk of infection or in
greatest need of intervention while also matching the appropriate treat-
ment modality with the particular characteristics of the user. Reports
indicate that 84 percent of the distributed coupons were redeemed in the
first 3 months of the program (Jackson and Rotkiewicz, 1987~.
Distribution of Sterile Needles and Syringes
Confronting AIDS concluded that, because not all IV drug abusers will
be able to abandon drug abuse or switch to safer, noninjectable drugs,
"tilt is time to begin experimenting with public policies to encourage the
use of sterile needles and syringes by removing legal and administrative
barriers to their possession and use." Some tentative results from needle
exchange programs in other countries support this recommendation, and
the committee continues to believe that evaluation of the effectiveness of
providing sterile needles and injection equipment to drug abusers in certain
circumstances is an essential part of planning a prevention strategy.
At least four countries the Netherlands, the United Kingdom, Aus-
tralia, and Switzerland have begun to experiment with free, govern-
ment-supported needle exchange programs, and all report encouraging
results (Lofton, 1988~. At a meeting sponsored by the World Health
Organization, the Netherlands reported that needle sharing declined from
75 percent to 25 percent from 1985 to 1987. WHO officials caution,
however, that programs may not be transplanted readily from one country
to another, and they urge nations to begin with small pilot programs.
In this country, reluctance to begin to experiment with such programs
for fear of encouraging drug abuse has begun to give way to concerns
about the risk of AIDS. In New York, where a state statute bans the sale
of sterile needles and syringes without a prescription, a proposal to
institute such an experiment was made as early as August 1985 by the
New York City health commissioner. (Although New York is one of 12
states with statutes banning the sale of sterile needles, the state health
commissioner is empowered to waive parts of the law for experimental
purposes.) Yet city and state government officials had difficulty agreeing
on details of the scope of the programs or the experimental design.
In early 1988 a number of events conspired to prompt a change in
policy. Concern about the spread of HIV infection in New York City was
underscored by a study showing that 1 of every 61 babies born there
tested positive for HIV antibodies (Novick et al., 1988~. In another
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ALTERING THE COURSE OF THE EPIDEMIC 87
development, ADAPT, a well-respected local drug treatment group,
threatened to break the law openly and distribute sterile needles and
syringes. With these added pressures, New York State and City agreed to
an experimental program to issue sterile needles and equipment to addicts
on methadone maintenance program waiting lists in targeted neighbor-
hoods in which drug abuse was rampant (Raymond, 1988b). These needle
and syringe exchange programs may be viewed as a way to attract addicts
into treatment during which they can be counseled not only about the
danger of contaminated needles and syringes but also about unprotected
sex.
There are a number of other short- and long-term approaches to the
problems of IV drug abuse that deserve attention, both on their own
merits and because the stakes are now higher as a result of the HIV
epidemic. In particular, the widespread variations in seroprevalence
among even needle-sharing drug abusers highlight the opportunity for
interrupting the spread of infection in this group (see Chapter 21. As one
tack, the committee supports the immediate extension of serologic testing
and counseling for HIV infection to all appropriate settings in which IV
drug abusers are seen. Programs should also be developed to promote
self-help support groups of former and current drug abusers as a means of
providing education about AIDS and drug abuse among at-risk groups.
Some treatment centers have designed programs of this type to counsel
the families of abusers as well and to assist in obtaining housing, child
care, and legal assistance (Raymond, 1988a).
Some long-term strategies that deserve increased attention include
intensified efforts to prevent IV drug abuse by educating teens and
preteens in high-risk populations. Research and evaluation are critical to
ascertain which interventions work best.
RESOURCES
Unlike biomedical research, which is traditionally and overwhelmingly
a federal responsibility, funds for AIDS prevention and education right-
fully come from a variety of sources, including federal, state, and local
governments. It is thus somewhat more difficult to determine whether one
of the goals of Confronting AIDS—providing by 1990 $1 billion a year in
"newly available funds" for public health and education- is being
reached. The goals for public health and education were set with the
recognition that, instead of being the sole funding source, the federal
government is "the only possible majority funding source."
Various private sources have also been marshalled, and charitable
contributions in the form of foundation support and individual funding of
local AIDS service-providing groups remain a critical part of the effort.
OCR for page 88
88 CONFRONTING AIDS: UPDATE Eggs
Contributions from private individuals are not only monetary; they also
take the form of thousands of hours of volunteer time.
The current administration request for $1.3 billion for AIDS in fiscal
year 1989 represents a substantial (37 percent) increase over the actual
funding of the preceding fiscal year. Of the total Public Health Service
AIDS budget, $400 million is earmarked for prevention efforts under the
category of public health control measures. This total includes a small
portion for the prevention of transfusion-acquired AIDS and the devel-
opment and evaluation of blood tests ($26 million). The lion's share ($374
million) is reserved for information and education programs directed at
the following audiences: the public at large ($50 million); school- and
college-aged youths ($36 million); high-risk or infected individuals ($241
million, including $162 million for testing, counseling, and referrals); and
health care workers ($44 million). In addition, communities will receive
$93 million for the development of expanded programs to treat drug
abusers and another $41 million to develop drug abuse prevention
strategies.
The committee is encouraged by the growth in federal funding and by
the heightened commitment of state and local governments, foundations
(Wells, 1987; Seltzer, 1988), and the private sector (Allstate, 1988~. Yet
the shortfall is still considerable. The committee believes that several
critical areas of AIDS prevention and education still need an infusion of
personnel and funds.
Perhaps the single greatest concern is the lack of availability of
treatment facilities for IV drug abusers and the lack of support for
programs to eliminate or reduce drug abuse or to mitigate the danger of
shared injection equipment. The committee believes that a substantial sum
of money will have to be spent for these purposes, well beyond the $1 billion
originally proposed for AIDS public health and education measures.
IOM/NAS is currently conducting a congressionally mandated study to
assess the adequacy of third-party coverage for substance abuse treat-
ment. The study's assessment of the cost of such treatment will supple-
ment the information already compiled by the Presidential Commission
on the Human Immunodeficiency Virus Epidemic. That information was
used by the commission as the basis of their recommendation that $1.5
billion annually will be necessary for drug abuse treatment and education.
The waiting lists for entry into treatment programs are a clear indication
that the caliber of the ammunition in the war on drugs needs to be
increased.
A number of other specific programs are deserving of particular
mention for example, the support of counseling linked to antibody
testing. There is a growing realization of the need for such counseling
that is, beyond the short-term counseling of antibody-positive individuals.
OCR for page 89
ALTERING THE COURSE OF THE EPIDEMIC 89
In a health care system skewed toward the reimbursement of procedures
rather than counseling, this need is particularly acute, especially if HIV
antibody testing is going to be increasingly relied on as a public health
measure. The long-term impact of such knowledge is cntical. Counselor
training and the development of counseling programs must accompany
the expansion of testing efforts. The recent demand for testing in sexually
transmitted disease clinics and family planning and maternal and child
health clinics is currently outstripping the availability of trained counse-
lors. Because they are labor intensive, expanded counseling programs
will require a major infusion of funds.
Minority groups are not being adequately reached by current educa-
tional and outreach efforts. The rates of syphilis cases are an example.
Syphilis has declined significantly among gay and bisexual white men; at
the same time, there have been small increases in the number of cases
among black and Hispanic gay and bisexual men and substantial in-
creases among heterosexual black and Hispanic men and women. Edu-
cational efforts to foster changes in sexual behavior are critical for
minority communities. Sexually transmitted disease programs, family
planning clinics, and maternal and child health centers that cater to
minority clients are all critical vehicles for this effort and are in dire need
of greater federal support.
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Representative terms from entire chapter:
drug abuse
