The AIDS Pandemic: Complacency, Injustice, and Unfulfilled Expectations

438 Pages·2006·8.88 MB·English

by  Larry Gostin

Contents
Foreword by Michael Kirby xi
Preface xix
Abbreviations xxxix
Part1. aidsin the Courtroom
1 Policy,Politics,and Law in Context 3
2 The Litigation Project:The Social Impact of  27
3 The Litigation Project:Privacy,Discrimination,and
Vulnerable Persons 41
Part2. Rights and Dignity
4 Human Rights and Public Health in the ⁄Pandemic 61
5 Health Informational Privacy in the ⁄Epidemic 89
6 Stigma,Social Risk,and Discrimination 109
Foreword
Something New
It is only twenty years since ⁄burst upon the world.Hard now for us to
imagine a world free of it.It crept up on us.Soon its awful reality was everywhere.
I first heard about it in a gay newspaper in Sydney early in the 1980s.Stories
began to appear about a strange new condition among gay men in the United
States,especially San Francisco.The weird symptoms seemed exotic and there-
fore not too troubling.Early comments from the Centers for Disease Control
and Prevention suggested that the phenomenon might be linked with the use
of the recreational drug amyl nitrite.
From such small beginnings and tiny news stories the problem soon ex-
panded.By 1982,the acronym had been adopted.By 1984,Luc Montag-
nier and Robert Gallo had isolated the virus.By 1985,a test was available to de-
termine the presence of the virus in human blood. Soon friends began to
manifest the symptoms.The quiet confidence that had been carried along by
the post-Kinsey sexual revolution, the belief that with knowledge of social
We live in a world threatened byunlimited destructive force,yetwe share a vision ofcre-
ative potential. . . . aidsshows us once again thatsilence,exclusion,and isolation ofindivid-
uals,groups,or nations,creates a danger for us all.—Jonathan M. Mann,former director,
whoGlobal Programme on aids(1988)
Preface
The ⁄ pandemic is probably the defining historical event of the late
twentieth century and threatens to further define our future (see Figure -1).
The first cases of gay men with pneumocystis pneumonia,an unusual oppor-
tunistic infection,were reported in the United States in June 1981.1By 1982 the
Centers for Disease Control and Prevention () established the term “Ac-
quired Immune Deficiency Syndrome”(),2and within two years Luc Mon-
tagnier and Robert Gallo isolated the human retrovirus that causes ;3the
retrovirus would later be named the Human Immunodeficiency Virus ().
The following year the Food and Drug Administration () licensed the first
test to identify antibodies to ,and blood banks began screening the nation’s
blood supply.4
In the United States,more than 800,000 cases of have been reported
since the beginning of the epidemic and a half a million people have died of
.5consistently has been one of the leading causes of death for per-
sons aged twenty-five to forty-four.An estimated 900,000 Americans are living
with ⁄,6 and one-fourth of these people do not know they are in-
Abbreviations
 American Bar Association
 American Civil Liberties Union
 Clinical Trials Group
 Americans with Disabilities Act
 Age Discrimination and Employment Act
 Acquired Immune Deficiency Syndrome
 Litigation Project
 azidothymidine or zidovudine
 Bureau of Citizenship and Immigration Services (formerly the ),
Department of Homeland Security
 Ryan White Comprehensive Resources Emergency Act of
1990
 Centers for Disease Control and Prevention
 United Nations Committee on Economic,Social,and Cultural
Rights
 Council of International Organisations of Medical Sciences
 Department of Defense
 Department of State
aids
in the Courtroom
Part 1
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We can win. We can stop the spread ofaids. We can preventnewinfections. We can [better]
treatthose who suFer. In time,we can hope to find a cure. I propose to confidentlyhold up
the prospectofa world free ofaids.—James D. Wolfensohn,president,World Bank (2001)
Chapter 1
aids
Policy,Politics,and Lawin Context
This introductory chapter places the principal themes of the book in context.
It frames the major policy debates retrospectively and outlines their cur-
rent and ongoing implications.This discussion will put the epidemic in
historical perspective,examine the positions of the major players,assess con-
temporary policies,and predict future directions.policies are covered in
greater depth,and with more detailed support,in the following series of es-
says.This chapter follows the book’s five-part organization:in the Court-
room;Rights and Dignity;Policy,Politics,and Ethics;Special Populations;and
in the World.
aidsin the Courtroom
The first essay (Chapter 2) examines in the courtroom and presents data
from the U.S.Litigation Project ().The is a historically important
Originating from the United States,the red ribbon has become an international sym-
bol for the fight against .In 2000 Michael Ransom carved the Ribbon Chair
as a symbol of support in this indiscriminate pandemic.
event because it systematically tracked all significant court cases involving
⁄for more than a decade.Twentieth-century America is well known
for being a highly litigious society.Even so,there had never been a disease that
provoked as much litigation as ⁄. The  tracked several thousand
court and human rights cases on almost every imaginable topic.Just to give a
few illustrations,civil litigation was brought in the fields of torts,family law,
and constitutional law.Litigation penetrated most social institutions,ranging
from prisons to the blood supply system.Even judges found themselves as de-
4 : aids in the courtroom
fendants.The fact patterns in these cases vividly illustrate the social upheaval
wrought by this modern pandemic.
Torts
Contracting an infectious disease used to be perceived as a matter of chance or
inadvertent misfortune.But in the first decade of the ⁄epidemic,it was
not uncommon for an exposed person to search for fault and,with it,liability.
Claims of lack of due care,even bad faith,by those who were exposed to 
found their way to the courtroom.The depth of mistrust spanned many rela-
tionships:patients against physicians,health care professionals against hospi-
tals,and sex partners against their lovers.Tort litigation was instigated,for ex-
ample,concerning false diagnoses of infection,failure to diagnose,and
fear of exposure.The judiciary wrestled with the issue of whether to provide
a remedy for those who were not actually harmed but exhibited fear and anx-
iety resulting from a perceived exposure to infection.For the most part,the
courts required some actual harm before awarding damages to ensure that the
plaintiff’s case was genuine.1
FamilyLaw
The potential for ⁄to stir conflict within the family is apparent.Infec-
tion can be transmitted sexually and perinatally,affecting the spouse and future
offspring. The attachment of blame to persons living with ⁄ can be
used as a weapon in divorce,custody,and visitation disputes.Finally,the per-
son’s health,including his or her mental health,can be used to imply incapac-
ity to care for, or supervise, a child. Cases on all of these issues, and more,
found their way to the courts.cases did not have a significant effect on the
development of family law.However,the fact patterns demonstrate that ,
because it could be transmitted sexually and perinatally, caused serious up-
heaval in many marriages and families.
Constitutional Law
The ⁄epidemic forced the courts to grapple with some of the most
fascinating constitutional issues in the field of public health.The judiciary is-
sued important rulings in relation to cherished freedoms—association, ex-
pression,and liberty.Bitter disputes over the freedom to associate occurred
aidsPolicy,Politics,and Law : 5