The AIDS Pandemic. Impact on Science and Society

548 Pages·2004·6.769 MB·English

by  Kenneth H Mayer and H.F. Pizer (Eds.)

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Contributors
Frederick L Altice
Associate Professor and Director of Clinical Research, AIDS Program, Section of
Infectious Diseases, Yale University School of Medicine, New Haven, USA
Deborah Anderson
Professor, Obstetrics and Gynaecology, Boston University School of Medicine,
Boston, USA
John-Manuel Andriote
Washington, DC, USA
Priya Bery
Director of Policy & Research, Global Business Coalition on HIV/AIDS,
New York, USA
Chris Beyrer
Director, Fogarty AIDS International Training & Research Program, Johns
Hopkins University, Bloomberg School of Public Health, Baltimore, USA
Samuel A Bozzette
Department of Medicine, University of California San Diego, La Jolla, USA
Susan Buchbinder
Director, HIV Research Section, San Francisco Department of Health,
San Francisco, USA
Patricia Case
Program in Urban Health, Department of Social Medicine, Harvard Medical
School, Boston, USA
Sreekanth K Chaguturu
Resident in Internal Medicine, Massachusetts General Hospital/Harvard
Medical School, Boston, USA
Myron S Cohen
Professor of Medicine, Microbiology and Immunology, University of
North Carolina-Chapel Hill, Bioinformatics Building, Chapel Hill, USA
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Contributors
Myron E Essex
AIDS Prevention Initiative in Nigeria, Harvard School of Public Health,
Boston, USA
Paul Farmer
Brigham and Women’s Hospital, Division of Social Medicine & Health
Inequalities, Boston, USA
Jennifer Furin
Brigham and Women’s Hospital, Division of Social Medicine & Health
Inequalities, Boston, USA
Polly F Harrison
Director, Alliance for Microbicide Development, Silver Spring, Maryland, USA
Mina C Hosseinipour
Assistant Professor, Division of Infectious Diseases, School of Medicine,
University of North Carolina, Chapel Hill, North Carolina, USA
Phyllis J Kanki
Director, AIDS Prevention Initiative in Nigeria, Harvard School of Public Health,
Boston, USA
Salim S Abdool Karim
Deputy Vice Chancellor, University of Natal, South Africa
Mitchell H Katz
Director, San Francisco Public Health Department, Epidemiology and
Biostatistics, University of California, San Francisco, USA
Jeffrey D Klausner
San Francisco Department of Health, San Francisco, USA
N Kumarasamy
Chief Medical Officer, YRG Centre for AIDS Research and Education, Principal
Investigator-ACTU/HPTN052-Chennai site, Voluntary Health Services,
Tharamani, India
Trisha L Lamphear
The Alliance for Microbicide Development, Silver Spring, Maryland, USA
Zita Lazzarini
Director, Division of Medical Humanities, University of Connecticut Health
Center, Farmington, USA
Kenneth H Mayer
Professor of Medicine and Community Health, Brown University/Miriam
Hospital, Providence, USA; Fenway Community Health
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Contributors
James D Neaton
Professor of Biostatistics, School of Public Health, University of Minnesota,
Minneapolis, USA
Laurence Peiperl
Department of Medicine, University of California, San Francisco, USA
Willo Pequegnat
Associate Director, Structural and International HIV/STD Prevention Programs,
Center for Mental Health Research on AIDS, National Institute of Mental
Health, Bethesda, USA
H F Pizer
Founder and Principal, Health Care Strategies, Harvard Street, Cambridge,
MA, USA
Michael R Reich
Harvard University Center for Population and Development Studies, Cambridge,
USA
Sandra A Springer
Clinical Instructor, AIDS Program, Section of Infectious Diseases,
Yale University School of Medicine, New Haven, USA
Steffanie A Strathdee
Division of International Health and Cross-Cultural Medicine, Department of
Family Health Sciences, University of California San Diego School of
Medicine, USA
Jonathan E Von Kohorn
Halloran & Sage LLP, Westport, USA
David Walton
Partners In Health, Boston, USA
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Preface
Dr. Rieux resolved to compile this chronicle ... to state quite simply what we learned
in a time of pestilence: That there are more things to admire in men than to despise.
Albert Camus, The Plague, Part V
The premise of this book, The AIDS Pandemic: Impact on Science and Society, is
that the AIDS epidemic has transformed the multiple disciplines it has touched
from molecular virology to the conduct of clinical trials to bioethics and macro-
economics. I developed this perspective because I have been fortunate to work
over the last two decades with remarkable people, who have taught me many
unique lessons about the ways in which health care professionals, academic
researchers, and community activists can mobilize to understand, and to address,
a newly emerging public health crisis.
I initially became aware that there was going to be a burgeoning public health
problem with what came to be known as AIDS while doing an Infectious Disease
fellowship at Brigham and Women’s Hospital and Harvard Medical School in
Boston, while also working at Fenway Community Health in Boston. My affilia-
tion with Fenway is ongoing, sustained, and ever changing because of the superb
working environment and colleagues that I have been fortunate to know over
more than two decades. The executive directors of Fenway have been a talented
group of individuals, particularly Sally Deane, Dale Orlando, Michael Savage
and most notably Dr Stephen Boswell, who has led the agency to develop pro-
grams of international renown in developing a paradigm for community-based
responses to the AIDS epidemic. I am fortunate to have several stellar intellectual
colleagues at Fenway, including Dr Steven Safran, Dr Judy Bradford, as well as
administrative directors including, Louise Rice and Rodney VanDerwarker. It has
been edifying to watch successive generations of Fenway research team members
go on and develop their careers, going back to school to become physicians,
clinical psychologists, and public health researchers, or making other contributions
to community health defined as broadly as possible. It is a unique environment,
given its roots in the gay and lesbian communities, while at the same time creating
a new model of community-based research.
When I first came to Brown University in 1983, there was virtually no organ-
ized community-based response to dealing with the rapidly emerging AIDS
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Preface
epidemic in Providence and south-eastern New England. My academic chief, the
Director of the Division of Infectious Diseases, Dr Stephen Zinner (whose own
research did not focus on AIDS), created a very supportive environment which
allowed me to develop my clinical work, as well as a program of community-based
research in Rhode Island. Within two years of my arrival at Brown, Dr Charles
Carpenter assumed the position of Physician-in-Chief at The Miriam Hospital, and
was committed to creating a center of excellence for HIV care and clinical research.
Chuck was one of the first people to recognize that the emerging epidemic would
severely impact America’s underclass, particularly the most vulnerable populations,
e.g. women of color; and he set about to create a program that was culturally sensi-
tive and distinctive in its ability to address the manifold concerns of people living
with HIV and, at the same time, to do excellent clinical research. Chuck soon was
joined by Dr Timothy Flanigan, now the Director of the Division of Infectious
Disease at Brown. Tim’s dynamism expanded the programs at The Miriam Hospital
Immunology Center and led to the attraction of whole cadre of talented, younger
clinical investigators who have made an impact on developing community-based
programs that address the real world needs of people living with HIV, while devel-
oping important clinical and laboratory information. Dr Susan Cu-Uvin, who
oversees the clinic, has contributed enormously to our understanding of the
gynecological manifestations of HIV disease and the effects of antiretroviral ther-
apy on HIV acquisition and transmission. Dr Jody Rich has reframed the model of
harm reduction for injecting drug users in creative ways that range from creating a
drop-in center which deals with the panoply of needs that drug users may have,
ranging from de-addiction services, to access to sterile syringes, to vaccination
against hepatitis A and B and screening for sexually transmitted infections.
I am also fortunate to have interacted with a number of outstanding junior
colleagues, including Drs Michelle Lally, Jennifer Mitty, Karen Tashima, Herb
Harwell, David Pugatch, Mark Lurie, Kate Morrow, and Grace Macalino. Our
Chief of Medicine, Dr Edward Wing, has integrated the clinical and research
environments through his unqualified support of best practices.
In addition to excellent medical research colleagues, I have been privileged to
work with some outstanding public health researchers and practitioners, includ-
ing Drs Sally Zierler, Vincent Mor, Stephen McGarvey, and Terri Wetle. The
deans at Brown’s Medical School have been uniformly supportive, starting with
Dr David Greer, succeeded by Dr Donald Marsh, and most recently, Dr Richard
Besdine. In summary, the environment at Brown has been extremely conducive to
trans-disciplinary thinking, resulting in unique research studies and the genera-
tion of new data that has direct impact on the lives of people living with HIV and
those at most risk for AIDS. One of the most wonderful parts of being a faculty
member at Brown University is the access to stellar students, whose intellectual
capabilities are astounding, and whose idealism and commitment to international
public health continue to inspire the faculty to redouble our efforts and think cre-
atively about our research endeavors.
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Preface
Although my initial work in the AIDS epidemic focused on the burgeoning epi-
demic in New England among men who have sex with men and women at risk for
HIV, it became clear very early on that the largest impact of the epidemic would
be outside the United States. About 10 years ago I took over responsibility for a
program set up at Brown, in conjunction with Tufts University, to coordinate a
training program to develop international research infrastructure for clinical, lab-
oratory, and behavioral investigators from five countries in Southern and Eastern
Asia. I have been particularly fortunate to develop an on-going and every-grow-
ing relationship with several remarkable Asian organizations, most notably YRG
Care, a community-based organization in Chennai (Madras), Southern India. My
colleagues there, Drs Suniti Solomon, and Balakrishnan, N Kumarasamy, as well
as the administrative leadership, Mr AK Ganesh and Mr AK Srikrishnan have
taught me an immeasurable amount about how a community-based organization
can scale-up, one program at a time, to develop multifaceted responses to a bur-
geoning local epidemic, and in the process, create a model of community-based
research that offers lessons for colleagues in other parts of Asia, as well as Africa
and other developing nations, in addition to clinical researchers and students in
resource-rich environments.
The AIDS epidemic has led to some distinctive relationships and partnerships.
One of my other full-time jobs has been to serve as a member of the Board of
Directors of the American Foundation for AIDS Research, an organization that
helped to jumpstart many important AIDS-related research and public policy
issues. I continue to be in awe of the dynamic moral leadership of Dr Mathilde
Krim, the founder of amFAR, as well as her talented staff, including the CEO,
Jerry Radwin, the Vice Presidents for Public Policy, Jane Silver and now Judith
Auerbach, and the Vice President for Clinical Research, Kevin Frost. The impres-
sive volunteerism of the Board, ranging from successful people in the world of
business and the media to distinguished research scientists and public health offi-
cials, also serves to remind me of the unique civil society response to AIDS that
has helped us accomplish so much in the fact of this daunting epidemic.
Because of the many domains that the epidemic touches, and the need for large
commitments of public resources to support AIDS-related initiatives, the role of
public officials needs to be acknowledged. I have been fortunate to work in two
states in New England that have had enlightened responses to the AIDS epidemic,
and have learned a great deal from some very dedicated public health officials,
including Jean McGuire, John Auerbach, Kevin Cranston, Dr Al DeMaria, Dr
Patricia Nolan, Paul Loberti, and Tom Bertrand. Without the insight and coopera-
tion of these officials, none of our community-based research and care programs
could have moved forward. In addition, the local environment that began
with Fenway Community Health has been augmented by several wonderful
community-based organizations, ranging from the AIDS Action Committee of
Massachusetts, to the Community Research Initiative of New England, to AIDS
Project Rhode Island and AIDS Care Ocean State, to the Multi-cultural AIDS
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Preface
Coalition and Latino-American Health Institute. The partnerships of these organ-
izations with Fenway Community Health and Brown University researchers have
served as a reality check for the development of community-focused research and
clinical programs that are addressing the needs of the populations most affected
by the epidemic.
Last, but not least, this book could not have happened without the support of
administrative colleagues, particularly Lola Wright who enables me to spend so
much time on the road and still be able to maintain my focus on ongoing respon-
sibilities and commitments. In addition, my efforts at Fenway have been greatly
supported by Susan Johnson, and our Fogarty International Training Grant has
been wonderfully supported by Eileen Caffrey and Jennifer Hyde. I would like
to acknowledge Irma Rodriguez, my colleague of 11 years, who has helped us
develop new laboratory techniques to better assess the spread of HIV in New
England, and throughout the world.
While thinking about this book, I have been extremely fortunate to have the
loyal support and enthusiasm of my family, including my mother, Betty Mayer, as
well as my sister and brother-in-law, Arlene and Stuart Shainker, and a large
coterie of devoted friends. Watching my niece Haley and my nephew Danny
growing, and marking birthdays and other celebrations with close friends over the
past two decades has put many of my AIDS-related activities in perspective; i.e.
there is an urgency to do as much as we can, as quickly as we can, to ameliorate
the ravages of AIDS. But at the same time, knowing that we are all finite, it’s
important to step back and to celebrate the happy times that we are privileged to
enjoy. I was fortunate to have two superlative role models from infancy through
middle age: my father, Paul Mayer, a mechanical and civil engineer, who taught
me the need to undertake any new venture with thorough planning and meticu-
lous commitment to doing the best job possible, particularly if others were
depending on the effort, and my uncle, Dr Norbert Freinkel, who taught me mul-
tiple lessons about the art and science of medical research.
This book would not be possible without the seamless collaboration with Hank
Pizer, a talented medical writer, health care consultant, and dear friend of more
than two decades. In the earliest days of the AIDS epidemic, because of my role
as a community-based researcher and clinician, the Boston Mayor’s Office asked
me to help draft educational materials for at-risk individuals. I could think of no
better colleague to develop these fact sheets than Hank, who had already written
several excellent books about health care issues for the lay audience. Our initial
collaboration led us to write the first book on AIDS for the general public, The
AIDS Fact Book (Bantam Press, 1983) and more recently we edited The
Emergence of AIDS: The Impact on Immunology, Microbiology and Public
Health(APHA Press, 2000). The current volume builds on its predecessor, since
the AIDS epidemic continues to evolve, further affecting a wider range of clinical
and public health concerns, with new and more profound effects on research, care
and humanity.
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Preface
We hope that this book, with its remarkable cast of talented authors, will help
synthesize the lessons of AIDS in ways that will inspire readers to think of new
ideas to end this scourge, which already has had such a catastrophic and personal
toll on tens of millions of people. We would be remiss at this juncture not to step
back and remember the many friends and colleagues no longer with us because of
AIDS, to celebrate their lives, to reflect on how their loss has diminished our
experiences, and to resolve to do whatever we can to mitigate the further depre-
dations of this global pandemic.
May 2004 Kenneth H Mayer
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About the Editors
Kenneth H Mayer, MD, is Professor of Medicine and Community Health at
Brown University, Director of the Brown University AIDS Program, and
Attending Physician in the Infectious Disease Division of the Miriam Hospital in
Providence, Rhode Island. In addition, he is Adjunct Professor at Harvard
University’s School of Public Health and Medical Research Director at Boston’s
Fenway Community Health Center, where since 1983 he has conducted studies of
HIV’s natural history and transmission. In the early 1980s, as a research fellow
studying infectious diseases at Brigham and Women’s Hospital, Dr. Mayer was
one of the first clinical researchers in New England to care for patients living with
AIDS.
In 1983, Dr. Mayer co-authored (with H.F. Pizer) The AIDS Fact Book the first
book about AIDS written for the general public. In 1984, he began one of the first
studies of the natural history of HIV infection, and was subsequently funded by
the federal government to study biological and behavioral factors associated with
male-to-male HIV transmission. Starting in 1987, he and his colleagues have
been supported by the NIH and CDC to study the dynamics of heterosexual HIV
transmission and the natural history of HIV in women, and to study HIV preven-
tion interventions, ranging from vaccines (HIVNET, HVTN) to microbicides,
behavioral and other strategies (HPTN). He has collaborated with basic virolo-
gists and immunologists to more accurately characterize the natural history of
HIV disease. In the late 1980’s, he initiated the first community-based clinical
trials for people living with HIV/AIDS in New England, and helped amFAR
develop its national Community-Based Clinical Trials Network (CBCTN). He
subsequently was named to the Board of Directors of amFAR and is co-chair of
its Clinical Research and Education Committee and a member of the Executive
Committee.
Dr. Mayer is the Director of the Brown and Tufts Universities’Fogarty (NIH)
AIDS International Research and Training Program, which has trained more than
50 laboratory and clinical investigators from East Asia. Dr. Mayer has worked
increasingly in India and participated in many regional conferences on biological
and behavioral approaches to prevention research, and the development of
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About the Editors
community-based clinical research activities in Asia. Dr. Mayer also co-edited
(with H.F. Pizer) The Emergence of AIDS: Impact on Immunology,
Microbiology, and Public Health, published in November 2000 by the American
Public Health Association Press.
Dr. Mayer has served on the Data Safety and Monitoring Board of the NIH’s
AIDS Clinical Trials Group and sits on several editorial boards of scientific pub-
lications, including Clinical Infectious Diseases. He has co-authored more than
300 articles, chapters and other publications on AIDS and related infectious dis-
ease topics, and is a frequent lecturer and presenter at national and international
conferences and symposia. He is currently on the national board of the HIV
Medicine Association and is a former board member of the Gay and Lesbian
Medical Association. He has received awards of recognition from the Governor of
Massachusetts, the Rhode Island Department of Health and the Greater Boston
Business Council. In 2001, he and Dr. Judith Bradford were named Co-Directors
of The Fenway Institute, which is designed to conduct population-based research,
develop professional and community educational programs and disseminate
information related to best practices and model clinical programs relevant to the
global health needs of lesbian, gay, bisexual and transgendered individuals and
communities.
Dr. Mayer received his B.A. in Psychology from the University of Pennsylvania
and his M.D. from Northwestern University Medical School. He completed his
residency and internship in Internal Medicine at Boston's Beth Israel Hospital,
while also holding clinical fellowships in medicine at Harvard Medical School.
From 1980 to 1983 he completed an Infectious Diseases Fellowship at Brigham
and Women's Hospital and Harvard Medical School.
H F Pizer,BA,PAis a medical writer, health care consultant and physician assis-
tant. He has written and edited 13 books and numerous articles about health and
medicine. With Kenneth Mayer he coauthored the first book about AIDS for the
general public, The AIDS Fact Book (Bantam Books, 1983) and co-edited The
Emergence of AIDS: Impact on Immunology, Microbiology, and Public Health
(American Public Health Association Press, 2000). His other works cover a vari-
ety of subjects in health and medicine including the first books for the general
public on organ transplants (Organ Transplants: A Patient’s Guide with the
Massachusetts General Organ Transplant Teams, Harvard University Press, 1991)
and stroke (The Stroke Fact Book, with Conn Foley, Bantam Books, 1985, and
the American Heart Association), and in women’s health on family planning (The
New Birth Control Program, with Christine Garfink, RN, Bolder Books, New
York, 1977, Bantam Books, New York, 1979), parenting (The Post Partum Book,
with Christine Garfink, RN, Grove Press, New York, 1979), miscarriage (Coping
With A Miscarriage, with Christine O’Brien Palinski, The Dial Press, 1980), and
artificial insemination (Having a Baby Without A Man with Susan Robinson,
MD, Simon & Schuster, 1985). He also coauthored Confronting Breast Cancer
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