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This is to certify that the
thesis entitled
THE CASE FOR HIV/AIDS EXECPTIONALISM
IN PUBLIC HEALTH POLICIES

BASED ON A COMPARISON OF
TWO STIGMATIZED EPIDEMICS

presented by

Lynn M. Ros s-Hermann

has been accepted towards fulfillment
of the requirements for

M.A. degree in Interdisciplinary
Programs in Health and Humanities

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THE CASE FOR HIV/AIDS EXCEPTIONALISM
IN PUBLIC HEALTH POLICIES
BASED ON A COMPARISON OF
TWO STIGHATIZED EPIDEMICS

BY

Lynn M. Ross-Hermann

A THESIS
Submitted to
Michigan State University
in partial fulfillment of the requirements
for the degree of

MASTER OF ARTS
Interdisciplinary Programs in Health and Humanities

1992

ABSTRACT
THE CASE FOR HIV/AIDS EXCEPTIONALISM

IN PUBLIC HEALTH POLICIES BASED ON A
COMPARISON OF TWO STIGHATIZED EPIDEMICS

BY

Lynn 14. Ross-Hermann

Since the problem of HIV/AIDS was recognized, there have been
arguments as to how to solve the problem. Some legislators have
advocated return to traditional public health methods, including
testing and isolation of those infected. Others claim HIV/AIDS is
a special case, and should be addressed with specialpolicies. A
case for exceptional policies can be made in comparing the current
epidemic with the syphilis epidemic of the early twentieth century.
Although similar in public reaction and.modes of transmission, the
epidemics have been dealt with in different manners. The policies
of HIV/AIDS exceptionalism developed as a result of the differences
in the role of public health.during the two periods, as well as the
current emphasis on individual rights allowing special interest
groups to exert influence on law-makers. It is unlikely that
health policies of the past would be useful in the current

epidemic.

To Mom and Dad, who don't always
understand but still love me
and to Tom, who does understand
and still loves me

iii

ACKNOWLEDGMENTS

I would like to thank.the many people who aided and encouraged
me throughout the course of writing this thesis. My guidance
committee, Drs. Vinten-Johansen, Fleck, Perlstadt and Lillie have
been very helpful with their suggestions and comments. Without
their help I would have ended with a very unfocused,
unsubstantiated paper.

We are few in the Interdisciplinary Health and Humanities
program, but have I have enjoyed breaking this new ground with my
fellow students. I thank Sheila, Jon, Ed and Harriet for reviewing
my thesis and offering many valuable suggestions. Good luck on
yours’.

My colleagues at the Institute of International Health, Dr.
P. , Herb, Nina, Sylvia and Kay, have been a much appreciated
cheering section, encouraging me each time I was ready to give up.

Many thanks also to my colleagues in the Disease Control
Section of the Michigan Department of Public Health. Not only have
I learned a lot about HIV/AIDS from then, I also have benefitted
from their discussions of how to "save the world" over the lunch
table.

Hy roommates Kris and Jodie have put up with my piles of
papers and books spread across the floor for the good part of this

iv

year. They deserve a special thanks for not throwing me (or my
stuff) out.

I could not have completed this project without the
encouragement and.prayers of many of my friends, including (but.not
limited to), Lisa W., April and Matthew, Kris TA, Tonya and Scott,
LouAnn W. and the rest of the women from Thursday night, Kim H.,
Cynthia and Jerome L., and Valerie H. (Phil. 1:3-6).

My parents have loved and encouraged me throughout all my
years in school. I appreciate how they taught me not to give up
and to always work to the best of my abilities.

Finally, I thank Tom for his constant love and support, for
reading many revisions and for not holding it against me when I
stressed. Also for helping me to keep my eyes pointing in the

right direction and to keep "pressing on to the prize."

Preface

My interest in HIV/AIDS dates back to an undergraduate
immunology class where I studied how HIV'devastates the body’s
immune system and develops into Acquired Immunodeficiency
Syndrome. In the course of my graduate studies, I began
working at the HIV/AIDS surveillance unit of the Michigan
Department of Public Health. It was during this time that I
began reading some of the literature dealing with the many
aspects of the nation’s AIDS epidemic, as well as learning
about many of the policies relating to HIV/AIDS.

One of the books I read was Randy Shilts' "And the Band.
Played On." It was this book which first confronted me with
the many aspects of the HIV/AIDS problem. Although it is
written from a homosexual perspective, Shilts also lays out
the role of other groups (hemophiliacs, blood recipients, drug
users, and heterosexuals, both female and male) affected by
the virus.

The problem of how to control the HIV/AIDS epidemic, even
limited to a public health perspective, is multifaceted, and
all of the issues could not be addressed within the scope of
this thesis. I have chosen the actions of the most vocal and
active special interest group, homosexual.men, as the focus.of
my analysis. However, I do not want to convey that this is

vi

vii
the only group affected, nor the only one doing anything about
the problem. As many officials try to emphasize, HIV
transmission is not limited to a particular gender, color, age
or sexual preference. Approximately 11 per cent of the
reported AIDS cases in Michigan are female, 51 per cent black,
and three per cent under the age of twenty. At least 30 per
cent contracted the virus by means other than homosexual
behavior. Their place in the current epidemic and their role

in fighting the spread of HIV/AIDS is very important.

TABLE OF CONTENTS

INTRODUflION O O O O O O O O O O O O O O O O O O I O O O O 1

HIV/AIDS AND SYPHILIS
IN CULTURAL AND SOCIOLOGICAL CONTEXT . . . . . . . . . . .4

DISCUSSION 0 O O O O O O O O O O O O O O O O O O O O O O O 29

WORKS CITED 0 O O O O O O O O O i O O O 0 O O O O O O O O O 37

INTRODUCTION

No word causes more fear in the heart of an American
today than the word AIDS--Acquired Immunodeficiency Syndrome.
Since recognized in the early 19808, AIDS has killed 141,223
people in the United States--1886 in Michigan (MDPH 1992).
Over one million are believed to be infected with the virus
causing AIDS. With no cure or vaccine for the virus, the only
way AIDS can be controlled is through public health prevention
efforts. However, the preventive methods called on by both
health officials and the public to monitor and control the
epidemic are often controversial.

Current public health legislation in effect to control
the. HIV/AIDS epidemic has been termed by many ”HIV/AIDS
exceptionalism" (Bayer 1991). This refers to the legislation
designed specifically to deal with HIV/AIDS, including the
requirement for specific informed consent for any testing for
HIV“. These policies are very different from other current
and past communicable/sexually transmitted disease
legislation. It is the differences found in the policies
which lead to the question of how the exceptional policies

came about and if they are necessary to control the epidemic.

 

‘The HIV test consists of a simple blood test, similar to many
other tests which do not require informed consent.

1

2

One approach to examining the question of how policies
for HIV/AIDS came about is to compare existing policy with
policy of a similar epidemic. The syphilis epidemic of the
early twentieth century has several similarities to the
current HIV/AIDS epidemic, especially in the areas of modes of
transmission and social reactions to the problems (such as
public hysteria, stigmatization of sufferers, and demands for
government intervention by both those at risk and those not at
risk.) However, the resulting syphilis policies?roften were
very different from current HIV/AIDS legislation. The
differences in policies are possibly a result of 1) the
differences in the role of public health during the two time
periods, especially the early Progressive focus on community

good3 versus the contemporary focus on individual rights; and

 

2Policies relating to syphilis were included in legislation
for all venereal diseases, including gonorrhea and chancroid. The
laws were ‘very similar to those for other communicable and
infectious diseases, with the main difference being added
confidentiality of all records relating to the venereal diseases.

3A decision which exemplifies the stance of the courts during
the early twentieth century is Jacobson v. Massachusetts (1905,
cited in Parmet 1989, 745). In it, the court stated:

Although this court has refrained from any attempt to define
the limits of [the police] power, yet it has distinctly
recognized the authority of a State to enact quarantine laws
and "health laws of every description;” indeed, all laws that
relate to matters completely within its territory and which do
not by their necessary operation affect the people of other
States. According to settled principles the police power of
a State must be held to embrace, at least, such reasonable
regulations established directly by legislative enactment as
will protect the public health and the public safety...the
liberty secured by the Constitution of the United States to
every person within its jurisdiction does not import an
absolute right in each person to be, at all times and in all
circumstances, wholly freed from restraint. There are

3

2) the current emphasis on individual rights allowing minority
and special interest groups totexert influence on law-makers‘.

An examination of the results of the syphilis policies
show'that.many civil rights were infringed upon, and.this lead
to many sufferers and others at risk to avoid identification,
treatment and possible prosecution (Nelson 1932) . If a person
does not seek professional medical help, it is more likely the
disease will continue to be transmitted. Therefore, a policy
of HIV/AIDS exceptionalism which ensures confidentiality and
personal choice of testing is necessary to protect the civil
rights of those infected or thought to be at risk, as well as
to encourage early identification of those infected and
prevention efforts. The syphilis policies did not protect
individual rights in the same manner as current HIV/AIDS
legislation does. Therefore, policies similar to those.
implemented for the syphilis epidemic of the early part of
this 'century would not be politically or morally acceptable or

useful in the current epidemic.

 

manifold restraints to which every person is necessarily
subject for the common good. On any other basis organized
society could not exist with safety to its members. Society
based on the rule that each one is a law unto himself would
soon be confronted with disorder and anarchy.

‘Unlike the groups affected by syphilis, one of the groups
affected by HIV/AIDS, homosexual males, has made use of their
status as a recognized minority group to push forward legislation
supporting their interests relating to the epidemic.

HIV/AIDS AND SYPHILIS IN CULTURAL AND SOCIOLOGICAL CONTEXT

The different viewpoints surrounding the issue of
HIV/AIDS exceptionalism has been addressed recently in the N91
WWW Ronald Bayer Ph-D- . in a
"Sounding Board" article (1991) examines the question of how
HIV/AIDS exceptionalism was developed and identifies the
impact of homosexuals in the policy-making process. He
states,

public health officials must contend with a range of
extrapro fess ional cons iderat ions , including the
prevailing political climate and the unique social forces
brought into play by a particular public health
challenge. . . . In the first years of the AIDS epidemic,

U.S. officials had no alternative but to negotiate the

course of AIDS policy with representatives of a well-

organized gay community and their allies in the medical
and political establishments.‘

Because of outside influences, many of the traditional
practices of public health that might have been brought to
bear, such as those for syphilis, were dismissed as
inappropriate and unlikely to aid in controlling the epidemic.

Two other articles in m address different sides of the
exceptionalism issue. The first, an editorial by Marcia
Angell M.D. (1991), proposes a dual approach to the AIDS
epidemic which would do away with exceptionalism. This
approach would entail an "attempt to distinguish social from
epidemiologic problems and deals with both, simultaneously but
separately." To accomplish this goal, Angell emphasizes the

5

necessity for more widespread testing for HIV, including the
routine screening of all patients admitted to hospitals and
all doctors and nurses, as well as all pregnant women and
newborns. To deal with social problems attendant the
epidemic, Angell proposes protecting HIV-infected persons
against discrimination and hysteria by social and political
measures, mostly by statute, and to deal with economic
consequences of HIV infection with a nationally funded program
analogous to the end-stage renal disease program. Overall,
Angell advocates a return to the policies of the past, but
adding legal protection against discrimination.

A Sounding Board article (1991) by Drs. David Rogers and
June Osborn (Vice-chair and Chair, respectively, of the
National Commission on AIDS), is a response to the letter by
Dr. Angell. They are alarmed at the signs that "AIDS is being
routinized . . . and not being addressed decisively." Instead
of the testing methods proposed by Angell, Rogers and Osborn
endorse four changes needed to deal with this public health
crisis. First, moral leadership5 is needed at the highest
level (i.e. the President). Second, swift moves must be made
to improve the financing that will make basic health care
services available to all who now lack them. Third, there

must be better programs to deliver explicit, culturally

 

5The authors do not explain in their essay what they mean by
moral leadership. It is possible they believe the leaders of this
country need to respond to the problem in a positive, well-timed
manner. Then, the public would have an example to follow in
response to the epidemic.

6

appropriate education so that all will know how AIDS is
transmitted and, equally important, how it is not. Finally,
voluntary testing should be extended aggressively, including
thoughtful counseling and swift access to health care as part
of an HIV/AIDS initiative. The hope with these proposals is
that they will help to eliminate discrimination and make
medical care more readily available. If these changes are
accomplished, they conclude, most Americans at risk would step
forward for HIV testing. Therefore the authors advocate
continued HIV/AIDS exceptionalism policy.

This series of articles represent the different sides of
the exceptionalism issue. Bayer describes how exceptionalism
developed. Angell recommends returning to traditional
communicable disease policy, and Rogers and Osborn endorse the
current exceptionalism. In order to try to determine the
efficacy of either of these proposals, lessons will be drawn
from the similar syphilis epidemic of the early twentieth
century.

The most recognized similarities between HIV/AIDS and
syphilis are medical--mainly modes of transmission and
prospect of treatment. Syphilis is a disease caused by the
bacteria Tzepgnema_pallida. Its main mode of transmission is
through sexual contact, but it also tmay' be transmitted
maternally at the time of birth or by blood borne routes such
as transfusions and "needle sticks”. During the early part of
this century, there was no proven cure for the disease.

However, several treatments, using heavy metals or salvarsan

7
(arsphenamine) , relieved symptoms and were believed to cure
the disease. Without treatment, syphilis progressed over the
lifetime of the infected individual and could culminated in
central nervous system involvement and finally death.

AIDS is a syndrome characterized by the presence of
opportunistic infections which result from a compromised
immune system. It is caused by the Human Immunodeficiency
Virus (HIV), a retrovirus that attacks cells of the immune
system. Several modes of transmission have been identified,
with sexual contact and intravenous drug use the most common.
Other modes include maternal transmission and blood
transfusions. There is no current cure for AIDS, and the
treatments (mainly AZT and pentamidine for opportunistic
infections) offer little long-term improvement. AIDS
sufferers usually die within a few years, of the appearance of
the first symptoms, which may occur from two to ten years
after they are infected with the virus.

Non-medical similarities between the two conditions are
found in the social reactions. Since the late nineteenth
century, venereal diseases such as syphilis have "been used as
a symbol for a society characterized by a corrupt sexuality"
and as an "affliction of those who willfully violated the
moral code, a punishment for sexual irresponsibility" (Brandt

1985, 5) . The moral codes‘ referred to by Brandt have evolved

 

‘The moral code, which is the generally recognized moral
standard of the community, should not be confused with moral
leadership, as previously defined.

8

over the course of the twentieth century. The late Victorian
era whispered about extra- or pre-marital affairs and visits
to prostitutes much as the homophobic society of the 1980s
whispered about gays visiting bathhouses. In each case,
moralists of the day worked to prevent a large part of society
from identifying personally with the disease. They convinced
much of the public that if they did not commit the sins, they
would not get the disease (fostering an ”it could not happen
to me" mentality).

During the rise of the epidemics (the early twentieth
century for syphilis and the 1980s for HIV/AIDS) , each was
characterized by misunderstandings and uncertainty of how the
diseases could be transmitted leading to public hysteria,
stigmatization of victims, and demands for authorities to
control the spread of the diseases. Once the severity of the'
diseases were realized by the public, they reacted to protect
themselves as they best knew how. Often this included
attempts to isolate those infected or believed infected by
demanding officials to force an individual into isolation or
if this were not possible, social ostracism leading to
isolation.

It is possible that hysteria in both epidemics resulted
from an initial lack of knowledge combined with a realization
of the severity of the diseases by the public and mis-
information on the transmission of the causative agents.
Hysteria is defined in the sociological literature as "a

belief empowering an ambiguous element in the environment with

9

a generalized power to threaten or destroy . . . The three
components of a hysterical belief are an ambiguous situation,
anxiety, and redefinition of the situation (Smelser 1963, 84-
85). Lack of knowledge of how a contagion is passed, and the
riskiness of behavior often lead to ambiguity and anxiety.

Fear that casual contact would lead to infection is common to
both epidemics. In an anonymous story in a monthly magazine
(in 1912) , a woman describing the agony and stress that
accompanied an apparently innocently transmitted infection
illustrates the lack of education as to the modes of

transmission of syphilis.

At first it was unbelievable. I knew of the
disease only through newspaper advertisements [for
patent medicines]. I had understood that it was
the result of sin and that it originated and was
contracted only in the underworld of the city. I
felt sure that my friend was mistaken in diagnosis.
When he exclaimed, 'Another tragedy of the public
drinking cup!’ I eagerly met his remark with the
assurance that I did not use public drinking cups,
that I had used my own cup for years. He led me to
review my summer. After recalling a number of
times when my thirst had forced me to go to the
public fountain, I came at last to realize that
what he had told me was true. Every day I expected
to be accused of unspeakable things and turned
adrift . . . Even though I was not discovered I had
perhaps a more direful possibility to face. Daily,
hourly, momentarily, I was haunted by the dread of
passing on the disease to another . . . Every act
of my life was carefully weighed under the
influence of that feverish. fear' . . . I ‘was
strained, tense-afraid, afraid. Night and day, day
and night I bore my burden of fear (Brandt 1985,
21-22). -

The belief that syphilis could be transmitted by casual
contact likely contributed to the public's hysteria. If a

10
person could become infected so easily, a large proportion of
the population would be at risk--the disease would no longer
be reserved for the promiscuous and prostitutes.

Other situations illustrate reactions by individuals as
well as physicians when a person not believed to be at risk
was found to be infected. Long (1938, 373) describes a
situation where

[a] respectable man and woman, with seven children

ranging in ages from one to eighteen years, came for

interpretation of the medical findings of the physical
examinations at the family agency clinic. Both showed
positive reactions to the Wassermann test. These people
were stunned, the situation horrible and unbelievable to
them, the source of infection unknown.
He tells of another case in which a young physician did not
mention the positive results of a syphilis test because "the
patient and wife were such well educated and sensitive people
that the truth about the diagnosis would be too shocking and
they had trouble enough. " A psychiatrist agreed with the
doctor about secrecy (1938, 381). The denial by the patients
of knowledge of how they'became infected in the first case and
the withholding of diagnosis by the doctor in the second
illustrate the negative connotations syphilis had as well as
the naivete as to how and who could contract the disease. It
appears that there was a definite idea, even among physicians,
of what type of person could become infected with syphilis.
The same type of fear and hysteria has been seen in the

first decade of the AIDS epidemic. In White Plains, a New

York mail carrier refused to deliver mail to an AIDS Task

ll

Force office for two weeks because he feared catching the
disease (New York Times 7 April 1987, 8:7). In Florida, a
barber refused to cut the hair of three hemophiliac brothers
who tested positive for HIV. The family minister suggested
they stay away from Sunday church services (Robinson 1987).
Several groups organized opposition to the annual National Gay
Rodeo in 1983, held in Reno, Nevada, for fear that "all those
homosexuals would spread AIDS throughout Nevada" (Shilts 1987,
351-352). Such fearful reactions still occur in 1992, several
years after the modes of transmission were identified.7

Part of this continuing fear may be due to the general
attitudes towards those whose behaviors place them at greater
risk for becoming infected, causing them to be stigmatized.
A stigma has been described as ”a bodily sign that people view
as evidence of something unusual and bad about the moral
status of the individual possessing it . . . three types are
physical deformities, blemishes of individual character and
tribal stigma” (Goffman 1959, 87). Often, people who are
stigmatized are treated as though they are not quite human.
This has been true for both syphilis and HIV/AIDS, mainly due
to character blemishes associated with individual's sexual
preferences, although stigma relating to physical deformities

also results at certain stages of the diseases.

 

7The May 13, 1992, NBC Nightly News featured a story on a
small town in Oklahoma with one AIDS case. This one case has
created hysteria, demands for isolation and the treatment of the
man like a convicted murderer after it was discovered he had sex
with several women in the town.

12
The stigma of having syphilis follows the belief that
only a certain type of person should.get the disease, and.when
someone not considered to be at risk became infected it was

terribly degrading. According to Stokes (1920, 145),

But 98 persons in 100 who know that there is such a
disease as syphilis are alive to the fact that it is
considered a disgrace to have it, and to little else.
Such a feeling naturally chokes all but secret discussion
of it. . .. . What made syphilis terrible to the many
really fine and upright spirits . . . was not the fear of
paresis, or of any other consequence of the disease.' It
was the torture of disgrace, unearned shame, burnt into
their backs by those who think syphilis a weapon against
prostitution and a punishment for sin (1920, 142, 145).

This sentiment is echoed over sixty years later by one
homosexual AIDS sufferer who comments, "mostly we talk about
what it feels like to be treated like lepers who are treated

as if they are morally, if, not literally contagious." (Altman,

1986). Another comments,

The pain, suffering and despair of the disease alone
are dreadful enough. The added stigma makes it virtually
unbearable. You lose not only your life, but also your
pride, your job, your insurance, your friends and your
family. Posterity remembers you for dying of AIDS, not
for having lived (Rogers and Gellin 1990).

Obituaries for those dying from either disease rarely
mentioned syphilis or AIDS by name, but rather cited a blood
disease or other long term illness as the cause of death.
This change was to protect the reputation of the surviving
family members and prevent further suffering. Once diagnosed,

a person likely could never remove the stigma placed upon

13
them.

Stigmatization often carried over into the workplace,
where'being found infected with syphilis was commonly grounds
for job dismissal or discharge from the military. Although
presently there are anti-discriminatory laws (most often
covered in legislation addressing handicapper issues; see
Leonard 1987) against such treatment in the workplace, many
employers in the 19803 tried to fire people with HIV or AIDS
(Altman 1986, 61). A positive HIV test will still lead to
military-discharge. Other forms of stigmatization include
refusal of physicians and other health care workers to treat.
those with the disease, refusal of the public to allow clinics
that treat such diseases in their neighborhood, protests by
parents not wanting infected children to attend school, and
even instances of burning down the homes of sufferers-
(Robinson 1987, 1; Herek and Glunt 1988).

The stigmatization *of those with AIDS has been largest
against the gay population. In 1987, 1,042 incidents of
harassment against gay people were reported to the National
Gay and Lesbian Task Force (NGLTF) that involved references to
AIDS; two thirds of the local groups who reported incidents to
NGLTF expressed a belief that fear and hatred associated with
AIDS fostered antigay violence (NGLTF 1988, in Herek and Glunt
1988). In 1988, one survey reported that one in five
Americans was unwilling to have contact with people with AIDS
in workplaces, schools, and communities (Blendon and Donelan

1988).

14
Although most of the focus of stigma has been on those
who are regarded as "responsible" for their disease, even AIDS
patients who have acquired the virus ”innocently" (i.e.
through blood transfusion or maternal contact) have faced
ostracism. Speaking before a congressional hearing, Alan
Brownstein, executive director of the National Hemophilia

Foundation, testified:

In many respects excess fear of AIDS has presented

more risk of death and disability than AIDS itself . . .

How sad it was the other day when I learned from one of

our chapters that their hemophilia camp enrollment was

down 75% this year because parents of ~hemophiliac
children had fear of their children being exposed to
other children with hemophilia. We are now beginning to
get reports of instances in the workplace where fear of
contracting AIDS is expressed by those working side by

side with hemophiliacs (cited in Altman 1986, 70).

Ryan White, a young hemophiliac, gained nationwide fame
when identified as an AIDS sufferer. His classmates’ worried
parents attempted to prevent him from attending school through
legal measures. His is one of many instances of children who
are HIV positive, many of whom have become the center of court
battles outlasting the lives of the children. Stigmatization
has been extended to those who have done nothing which could
be defined as morally wrong in becoming infected with HIV.

Hysteria, fear of disease, and stigmatization of
sufferers has lead to demands for the government to take
charge of the situation and provide resources (including
leadership, personnel and money) to aid in controlling both

epidemics. The public. in both cases expected those in

15

leadership of this country to be at the front of the fight
against the problems. The syphilis. epidemic featured
appeals to public health and sanitation (hygiene) officials to
control its spread. Some believed that if syphilis could be
properly diagnosed and effectively treated, it could be placed
on the same footing by boards of health as other contagious
diseases such as diphtheria and tuberculosis. This footing
could lead the way for public health officials to take a more
aggressive stand in the fight against venereal disease than
was currently being taken (Brandt 1985). This concern echoed
the sentiments of the American Medical Association's Committee
on Prophylaxis of Venereal Diseases in 1903 (cited in Parran
1937, 79): ”While other contagious diseases were controlled
or combated by boards of health with great vigor and excellent
results, venereal diseases are ignored by our sanitary
authorities, and the morbidity therefrom is consequently not
a matter of. record: officially, there are no venereal diseases
in the United States." In other words, until syphilis and
other venereal diseases were regarded in the same category as
other communicable diseases, they would not receive the same
treatment from the health officials.

Unlike the syphilis epidemic, three-quarters of a century
later appeals are directed to medical officials, especially
scientists, to find a treatment, cure and/or“vaccine for'AIDS.
Some of the first. demands of the Ihomosexual population
involved in the fight against AIDS were for increased funding

for research into the cause and possible treatments and cures

16
for the disease. Other demands were for the government to aid
in financing treatment and. support centers for those affected
by the virus and their families.

Above, it has been demonstrated that the syphilis
epidemic of the early twentieth century and the current
HIV/AIDS epidemic have several similarities when comparing
modes of transmission and the public’s reaction to the
epidemics. Because of these similarities, it is possible to
compare the resulting policies for each of the epidemics, and
to gain understanding of the complexities of the problems
concerning the problems from the differences.

The subject of preventing the spread of contagious,
particularly sexually transmitted, diseases is a highly
controversial and emotional issue, especially when the disease
has no cure and ultimately leads to a premature death. The
problem becomes worse when the primary means of infection are
defined by a large segment of society as socially
unacceptable, but may be passed to ”innocent" victims. Those
who believe themselves unlikely to become infected often call
for the protection of the innocent, sometimes desiring
Draconian-type” methods such as mass testing, identification
and quarantine of those infected. However, those who believe
themselves to be at risk for becoming infected oppose the

Draconian policies. Rather, they desire laws which would

 

'"Draconian" refers to laws which are extremely harsh and

restricting in nature, named after Draco' s law code in Athens, 621

B.C.

17
protect their rights and privacy.

The policies for syphilis during the early part of the
century and current HIV/AIDS policies represent different
points on the line between Draconian and individual rights.
The reasons for these differences are found in the philosophy
behind public health policy and the extent to which that
philosophy allowed for outside influences in policy-making.

During the early part of the twentieth century, public
health focus was mainly sanitation-based, with policy
generally formed for the community good, not necessarily
taking individual rights into consideration. A common thought
in twentieth century Progressivism was that the government
could, and should, make the, nation a better place to live and
prosper. One of the ways to achieve this goal was for a
community focus which would take all measures possible to
achieve as large a population as could be maintained--"the
more mouths, the more wealth.” (Rosen 1974, 120). These extra
mouths would help provide the country with more workers in the
'factories and farms, thus adding to the wealth and power of
the country.

However, the rise of syphilis and other venereal diseases
signaled to the Progressives a decline in the stability of the
family unit. Brandt (1985, 17) comments that ”as venereal
disease became a focus for Progressive fears concerning the
future of the family in the first years of the twentieth
century, physicians increasingly considered it their
responsibility to protect the institution of marriage from the

18

introduction of disease." In order to perform this duty,
physicians and social hygienists turned to the government for
aid. The government recognized the need to control the
syphilis epidemic and used their power to enact what they saw
to be the necessary public policy to meet their goals to
protect marriage and positive population growth (Rosen 1974,
123).

This Progressive concept of government intervention to
promote and protect health led to a notion of public health
which emphasized the importance of community. Charles Edward
Amory Winslow, professor of public health at Yale, defined

public health in 1920 as:

the science and art of preventing disease, prolonging
life, and promoting physical health and efficiency
through organized community efforts for the sanitation of
the environment, the control of community infections, the
education of the individual in principles of personal
hygiene, the organization of medical and nursing service
.for the early diagnosis and preventive treatment of
disease, and the development of the social machinery
which will ensure to every individual in the community a
standard of living adequate for the maintenance of health
(Winslow 1920 cited in Starr 1982, 180).

The enforcement of these goals within a community would
undoubtedly restrict individual liberties at some point by
forcing everyone to adhere to the government's standard of
health. However, the Progressive philosophy allowed for the
encroachment in order to accomplish their goals.

The policies enacted for the control of syphilis in the
early part of the twentieth century illustrate the

. 19
restrictions placed upon people. In 1899, Michigan became the
first state to make venereal disease (including syphilis) a
bar to marriage, directing all men to swear to their health
before taking marriage vows. This was to prevent syphilis
from being transmitted to the innocent wife and children.
Other laws passed in Michigan concerning the control of
syphilis went into effect in 1919. Act 272 sec. 6631.1
declared venereal diseases including syphilis to be
"dangerous, communicable and infectious, and therefore subject
to all the laws of the state pertaining to such diseases,
except as modified in this act” (Michigan Compiled Laws 1919) .
The modifications included provisions for the state health
department to regulate the quarantining and isolation of
infected persons and mandated the immediate reporting of any
cases to the health department (Act 272 sec. 6632.2) . It was
possible for the health officials to isolate anyone infected,
often resulting in the person being publicly identified. This
could result in loss of employment and other discrimination.

Persons infected with syphilis (and other infectious or
venereal diseases) were prohibited from employment in places
where food or drink is manufactured, prepared, served or sold,
or as cigar makers (Act 25 sec. 6635.1, Act 353 sec. 6637.1)
because it was believed these were among the modes of
transmission. People employed in these professions were
required to submit to a physical examination by a health
officer or physician whenever requested to by any local health

officer. Pregnant women were required to have a syphilis test

20
by her attending'physician.as a result of.Act 272 sec. 329.153
with hopes that intervention would keep the unborn from.being
infected. There were no‘ provisions for informed consent
before the test was administered, and a person could not
refuse to take the test.

Not only were individual's liberties imposed upon by
state officials, they also were bound by federal policy.
These policies allowed for the U.S. government between 1918
and 1920 to promote and pay for the detention of more than
18,000 women suspected of prostitution (Brandt 1985, 89) .
Women were 'held against their will in state-run
"reformatories" until it was decided by the officials they
were no longer infectious. It appears that most of the health
effort was focused on those people defined as immoral by the
government.

Some have asserted that these early efforts of the
government and social hygienists focused on the moral rather
than scientific aspects of the epidemic. Dr. N.A. Nelson, of
the Massachusetts State Department of Health, complains these
moral approaches did little, if anything, to control syphilis.
"What other disease would so long have been ignored in the
face of so complete an armamentarium! Someone has said that
if syphilis were only coughed and sneezed it would have been
wiped out long ago" (1932, 165). Nelson seems to imply that
the sexual nature of syphilis transmission has affected the
government's treatment of the problem. One example of the

moral approach by the government was in 1919 when Dr. Rupert

21

Blue, Surgeon General of the Public Health.Service, asked the
ministers of the country to set aside a day as Health Sunday
and to preach sermons emphasizing the responsibility of the
nation to protect returning soldiers and sailors and the
community at large, and to take vigorous measures for
combatting venereal diseases. His statement included "it is
the social responsibility of the communities, of which the
churches of every denomination are a part, to continue the
work carried on in time of war in order that the world may be
made safe not only for democracy, but for posterity” (New‘York
Times 13 January 1919, 7:2). The work Blue refers to is that
of fighting prostitution and extra-marital sex.

During the early 1930s, officials began to move away from
a. moralistic approach and. called for t"the extension. of
knowledge in the epidemiology of the disease and the better
application of existing. knowledge" as the steps needed in
control of syphilis (Parran 1932, 141). Officials began to
face the reality that syphilis is easily hidden and easily
driven undercover with morality-based policy. Nelson
emphasized this problem in his statement that "any law or
regulation, therefore, which attempts to force the syphilitic
into the open will succeed only in.driving him to the cover of
the drug store, the charlatan, the unscrupulous physician or
to no treatment at all” (1932, 167). An argument could be
made, therefore, for policy that would encourage individuals
at high risk to be tested and treated, and protect them from

being discriminated against.

22

Although the original policies enacted to control the
spread of syphilis severely limited the freedom of some
people, little has been written concerning the role those
believed to be at highest risk for syphilis played in
developing public health policy. It is unlikely they had any
impact on the laws enacted to control the spread of the
disease. As mentioned above, those seen most at risk for
becoming infected were promiscuous men and prostitutes. Since
the stigmatization of these groups was great, it was unlikely
that individuals in these groups were able to organize
themselves into politically relevant group or any type of
community. Since nobody wanted to identify themselves as
being infected, it was unlikely that one person would know if
another was infected or at risk. Because of the general
public’s ostracism of these groups, as described above, any
attempt by those infected to influence policy probably would
have been ignored.

It is possible the Progressive philosophy of the
government, as well as public health (a branch of government),
also prevented those infected or at risk of becoming infected
from influencing policy. Since‘ the emphasis was on protecting
the family unit and encouraging population growth, it is
unlikely those accused of breaking down the family structure
would be allowed to have a voice in policy-making.

Compared to the early twentieth-century focus on moral
solutions to the epidemic, the current focus of public health
policy is more medically-based with individual civil liberties

23

emphasized rather than community. The change to a medically-
based policy has been partially a result of the shift from
public to personal services as the public sources of illness
were controlled?, as well as the strides forward in science
and technology since the turn of the century. As science
became more able to identify the causes of disease, and to
cure and prevent disease, credibility in the courts and
legislative chambers grew. With a focus centering on personal
services, it follows that individual rights would become more
emphasized than community rights.

However, the policy issues surrounding HIV/AIDS are not
strictly scientific. They also involve the issues of
individual civil liberties, rights of the community, moral and
ethical questions, and allocation of funds. These issues have
opened up the possibility of different interpretations of what
is the best policy and demands for legislation to be enacted.
In these situations, the medical experts are often pitted
against the special interest lobbyists, each group sure their
way is the one that will solve the problems. According to

Parmet (1989, 766),

Cases of public health focus on the rights of the
individual and whether medical science justifies
particular“majority-imposed limitations of those rights.
Medical science, construed by the law as the servant of
individual patients, thus serves as the mediator between

 

9The advances made in sanitation during the early part of the
century greatly reduced the number of large-scale disease
outbreaks, and allowed authorities to focus on personal services
instead of community services.

 

24
A well-recognized individual interests and the less
developed, more inchoate conception of the public good.

It is necessary, then, for the special interest groups to
have a solid medical backing for their demands.

One powerful interest group during the AIDS epidemic has
represented the group hardest and earliest hit by the disease,
homosexual males. Early in the epidemic, gay men realized the
need to .take action because the government was not taking
steps to deal with the problem. They moved to become involved
with controlling a disease threatening to attack many of them.
At this time, gay men were most.often associated with AIDS
(then called GRID--Gay Related Immune Deficiency). The
infectious agent was not yet identified and there was no
treatment. With stigmatization and hysteria running high,
especially towards homosexuals, gays believed that they had to
stand up and demand their rights in order to avoid being
discriminated against, and possibly quarantined (Bayer 1989,
195-197). With no cure for AIDS in sight, this proposed
policy could mean a life sentence. Dr. Mathilde Krim of
Sloan-Kettering Institute for Cancer Research emphasized the
concern of gay men in a Congressional hearing in 1983, "The
atmosphere of doom and total helplessness surrounding the
problem of AIDS threatens to push us back into a medieval
society complete with the equivalent of colonies of pariahs
and lepers." (Altman 1986, 58). It is possible that the fear
of being questioned and isolated drove these men to make use

of the civil rights gained during the gay right's movement in

25
the 1970s and lobby against any legislation threatening to
take away their rights. A

Many of the demands of the homosexuals concerning
HIV/AIDS policies can be traced to the philosophies
surrounding the early gay rights movement which began with the
1969 Stonewall Street Riots in Greenwich Village, New York.
The period from the riot through 1971 included the emergence
of the modern gay movement, characterized by a willingness of
gays to demand not just tolerance but a total acceptance of
their way of life by government and the general public, and by
a new militancy in making these demands. By the mid-
seventies, a new type of gay politics had established itself
in the United States, where a number of activists started
using the traditional forms of American minority-group
politics to make their demands to the legislatures (Altman
1982) . _

The political strength of the homosexuals at the onset of
the HIV/AIDS epidemic was first felt in areas where gays had
organized into coalitions, such as the Alice B. Toklas and
Harvey Milk Gay Democratic Club in San Francisco, the
Whitman/Stein Democratic and Log Cabin Republican Clubs in
Washington, D.C. , the National Gay Task Force ,. and the
National. Gay Rights Advocates. By making use of existing
alliances, gays were able to influence several votes on early
state legislation related to AIDS, and later on the federal
level. Shilts describes one such occurrence which resulted in

moving the San Francisco government to spend $450,000 to

 

 

26
finance the world's first AIDS clinic, grief counseling and
personal support for AIDS [patients through the Shanti Project,
and the first locally funded education efforts through the

Kaposi's Sarcoma Foundation:

The supplemental appropriation sailed through the board
of supervisors without a dissenting vote. Bill Kraus and
Dana Van Gorder (gay activists) had timed the vote
perfectly. Half the board was up for reelection in five
weeks. Nobody would dare vote against public health
money, given the fact that one in four city voters was
gay. Mayor Feinstein personally felt the money should
come from some other part of the health budget, but Bill
Kraus knew her hands were tied as well. She was up for
reelection next year and wouldn' t dare veto an AIDS
funding bill (Shilts 1987, 188).
The political power of the gays was well known to Mayor
Feinstein and other politicians. They recognized that if they
were to have a chance to be re-elected they would have to be
supportive of the gay's demands. The same influence has been
found in other states, as well as on the national level.
From 1986 to the present, several laws have been enacted
by the Michigan Legislature which relate to HIV/AIDS. The
Michigan laws are fairly representative of other state laws
and generally follow the lead of the national legislation.
Many of the issues addressed.are similar'to those addressed.by
syphilis and venereal disease legislation in the past,
although the resulting laws differ.
Unlike the policies requiring a person to submit to a
test for syphilis upon demand by a medical or public health

official, an individual must give specific informed consent

27

before being tested for HIV (Mandatory Counseling and Informed
Consent Act 1988.) The purpOse of this Act is to ensure that
an individual understands the meaning, outcomes and
limitations of the test. The informed consent includes that
the person tested be provided an explanation of the test
including its purpose, the potential uses and limitations
(including chances of false positive results) of the test, and
the meaning of test results: explanation of the rights of the
test subjects including the right to withdraw consent to the
test prior to its administration, the right to confidentiality
of test results, and the right to be tested on an anonymous
basis: and a physical description (for identification
purposes) of the person to whom the test results may be
disclosed.

If the test for HIV is positive (usually meaning two
reactive ELISA and one positive Western Blot confirmation) , it
is required that the result be reported to a local health
department within seven days (HIV Reporting Act 1988). To
protect the identity of the infected individual, the reports
are confidential, with the option of’ anonymityu Next,
according to the Partner Notification Act (1988), the person
that administers an HIV test shall refer the test subject to
the appropriate local health department for assistance with
partner notification if the subject is HIV infected and the
person administering the test determines that the test subject
needs assistance with partner notification. The purpose of

partner notification is to inform a person of their possible

 

28

exposure to HIV, and counsel them concerning their options.
The identity of the infected partner is kept confidential.

Other HIV/AIDS Acts parallel policies for 'venereal
disease. These attempt to balance the issue of individual
rights verses public protection. The Health Threat to Others
Act (1988) makes it a felony for a person who knows he or she
is HIV infected to engage in sexual penetration with another
person without having first informed the other person that he
or she is HIV infected. The High Risk Crimes Act (1988)
requires that upon arrest of a person for certain "high risk"
crimes (e.g., prostitution, gross indecency, criminal sexual
conduct, intravenous drug' use), the icourt shall provide
information about HIV and recommend HIV counseling and testing
at a local health.department~ 'Upon conviction the court shall
order HIV testing and counseling to be confidentially
administered by a licensed physician or a local health
department. The Correctional Facilities Act (1988) requires
HIV testing of all incoming prisoners at state correctional
facilities, segregation of HIV infected prisoners subject to
discipline for high risk behavior, prisoner HIV testing upon
blood.or'body fluid.exposure of employees, free HIV’testing of
employees upon request and provision of equipment to implement
universal precautions. These laws limit the rights of certain
people, however, the limitations imposed have been justified
as necessary to protect the public.

 

DISCUSSION

The public health policies concerning the syphilis and
HIV/AIDS epidemics are characterized by different underlying
philosophies. Although officials in both cases wanted to
control the epidemics, the methods used to accomplish the
goals were different. Public health at the beginning of the
twentieth century implied a vast reserve of community
authority and obligation to prevent illness. Syphilis
policies were shaped by a Progressive philosophy that
legitimated government intervention, especially with regard to
preserving the family unit. Today, the rights of the public
and of individuals and minorities are seen as being in
opposition. HIV/AIDS policies are shaped by public health law
which attempts "to demarcate or balance the conflict” between
the interests of the individual on the one hand and the
interests of the community on the other (Parmet 1989, 742).

The major differences in the resulting policies are found
in how those infected or at risk.were treated. The rights of
people infected or believed to be infected with syphilis
during the early part of this century were limited in that a
person could be forced to submit to medical examinations and
tests to prove or disprove their infection upon the demand of
medical officers. A positive test for syphilis, especially
for prostitutes, could result in institutionalization in
jails, hospitals or camps until they were declared no longer

infectious. HIV/AIDS policy of informed consent protects

29

 

30
people from this type of invasion upon individual rights found
in syphilis policy. No one (except in limited situations) may
be tested for HIV without specific informed consent. Those
found to be infected are protected with confidentiality
provisions.

These changes in the role of public health to allow input
from individuals and minorities opened the door for special
interest groups to influence new public health policy. As
with most legislation, lawmakers take what their constituents
desire for policy very seriously when considering what side
they will endorse and vote for, especially when the experts
cannot or will not endorse one plan. Until homosexuals began
to voice their opinions on issues affecting them, there
appeared to be little opposition to the vocal moral position
of restricting the rights of those infected.

Unlike the promiscuous men and prostitutes of the
syphilis epidemic, homosexuals have been able to gain
legitimacy as a minority group, and to mobilize themselves as
a social movement (a movement in response to a specific
societal problem). Mauss (1975, 61-66) has described five
stages in the natural history of a social movement. They are
1) incipiency, 2) coalescence, 3) institutionalization, 4)
fragmentation, and 5) demiSe. Homosexuals have been able to
push the issues concerning HIV/AIDS into this movement. It is
possible that the civil rights movements of the 1960s set the
stage for a movement among homosexuals starting in 1969 to

become a legitimate social group. According to Altman (1982) ,

 

31

"the seventies saw the beginning of a large-scale transition
in the status of homosexuality from a deviance or perversion
to an alternative life style or’minority'. . . along with.this
change, homosexuals were being cast increasingly in the role
of the vanguard of social and sexual change, worthy of
considerable media attention." The civil rights movement took
the homosexuals through the incipiency stage (characterized by
"groping, uncoordinated. efforts . .. . unorganized, with
neither established leadership nor recognized.membership, and
little guidance or control") and into the coalescence stage
(formal and informal organizations developing out of segments
of the sympathetic public that have become the most aroused by
perceived threats to the preservation or realization of their
interests). These occurrences during the seventies prepared
the movement for the institutionalization stage in the
eighties (government and other traditional institutions take
official notice of a problem or movement and work out a series
of standard coping mechanisms to manage it).

The happenings surrounding syphilis only partially fit
into the social movement model. Although the problem of the
epidemic was addressed by health and government officials,
there was no movement with an organizational structure
consisting of committed members and able leaders (of those
affected by the disease). Without the leadership and
membership similar to that found in the homosexual movement,
no ideology was developed to help bring legitimation to the

cause and maintain the movement's identity. Because of the

32
stigmatization of syphilis sufferers and lack of public
discussion of the subject there was little chance for the
necessary leadership and membership to develop.

The gay rights movement resulted in a highly organized
interest-group which increased its influence on political
issues throughout the 19703 and 19803. When the AIDS epidemic
was first perceived as a threat to their community, gay
leaders. quickly' mobilized. to jpressure local and federal
governments to respond to the problem (the
institutionalization stage). The efforts of the homosexuals
combined with the efforts of those attacking the epidemic from
a public health approach to help develop policy that would
protect both the rights of the individuals and of the public.

The differences in public health policy for syphilis and
AIDS, and the examination of the reasons for the differences,
lead to the question: should the public health policy for
HIV/AIDS be different (”HIV/AIDS exceptionalism"), or should
it be treated like other communicable and sexually transmitted
diseases? Undoubtedly, disagreements over how policy should
address the problem of HIV/AIDS will continue. As seen in the
Angell and Rogers and Osborn essays, there is a wide range of
possibilities, fromwmandatory testing to education to keeping
policy as it is. Dr. Angell is correct in her idea that the
social problems of HIV/AIDS are often confused with the
epidemiological problems. However, her suggestion to combat
discrimination and hysteria with political measures seems to

miss an important part of the problem, that people cannot be

 

33
forced to like another person, or to treat others with
respect. In many places, homosexuals and drug abusers were
highly stigmatized even before HIV/AIDS. In order to combat
HIV/AIDS discrimination, it would first be necessary to
destigmatize responses to these two groups which are most
highly associated with the epidemic. .As Rogers and Osborn
suggest, this problem cannot be combatted by legislation, but
by moral leadership to counter discrimination and by more
explicit, culturally appropriate education to alleviate fears.

Any-time a health problem threatens to harm large numbers
of people, the challenge is for health officials to develop,
and for legislators to pass, laws to control the spread of
disease while at the same time being sensitive to the civil
rights issues concerning the epidemic. However, because of
the circumstances surrounding different epidemics, even when
there are several similarities, distinct policies are
necessary. The argument for different policies is
demonstrated in the syphilis and HIV/AIDS epidemics.

The Progressive philosophy of the early part of the
twentieth century played a large role in the policies
developed to control the syphilis epidemic. In retrospect,
the policies appear to be violations of civil liberties for
many individuals. Because of the current emphasis on
individual civil rights, it is unlikely the same policies
would be tolerated in the current epidemic. However, the idea
of equal rights and protection for all is not the same as

having specific legislation supporting the belief. Throughout

 

34
the twentieth century more minorities have been added by name
(women in the 19203, blacks in the 19503, handicapped in the
19703) to the list of groups which cannot be discriminated
against, therefore protecting their rights in more than just
theory.

It is possible the homosexual's belief that equal rights
are often only true in theory that inspired homosexuals to
start lobbying for policy favorable to their position on
HIV/AIDS. Voluntary, anonymous testing, and more sensitive
efforts to trace sexual partners arose from the concern that
identification of those with AIDS would lead to loss of
employment, housing and medical insurance, as well as to
social ostracism. Their demand was for exceptionalistic
legislation, specifically protecting a person’s right to
privacy, as well as ensuring that HIV status could not be the
basis for discrimination.

While the concerns and demands of the homosexuals had a
great influence upon the policies, they were not the only ones
calling for exceptional policy. Many public health officials
recognized the problems of driving people away from
established medical care with the earlier syphilis policies.
Bayer’s claim that AIDS has become less threatening in the
United States (in that the estimates of the level of infection
put forth several years ago have proved to be too high) and
therefore should not be treated as an exceptional disease,
fails to address the problem of driving people underground.
Although the numbers of those affected by HIV/AIDS may not be

35

as high as some other health problems, such as cancer and
heart disease, few health problems have produced the same
amount and level of public fear as AIDS. Without assurances
of strict confidentiality (and possible anonymity in some
states, including Michigan), it is likely that fewer people
who believe themselves at risk will come forward to be tested.
Lack of knowledge of one's HIV status prevents an infected
person from avoiding high-risk behavior, informing partners,
or receiving early medical intervention.

Policy enacted relating to HIV/AIDS must continue to
ensure the protection of the identity those infected in order
to encourage those who believe themselves at risk to come
forward to be tested. Without knowing their HIV status,
individuals cannot take the necessary precautions to prevent
further spread of the virus. At the same time, policy issues
must also address the protection of the community as a whole.
In this regard, steps must be taken to discourage infected
individuals from partaking in high risk behavior such as
unprotected sex and needle sharing. This would not amount to
a quarantine, unless knowingly passing the virus (or
potentially passing) was regarded as a felony (possibly as
attempted murder?) and the guilty person sentenced to jail.10

HIV/AIDS is an exceptional problem which must be

addressed with exceptional policies to control its spread and

 

10A trial is currently in process in Michigan for a man accused
of breaking Act 490 ( 1988) . There is also precedent in the
military for this type of case.

36
protect the rights of both those at risk of becoming infected
and those with little risk.. Returning to the public health
policy of the early part of this century would not yield a

fair or effective response to the current epidemic.

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