Lethal Decisions: The Unnecessary Deaths of Women and Children from HIV/AIDS

393 Pages·2017·1.916 MB·English

by  Arthur J. Ammann

decisions
LETHAL
The Unnecessary Deaths of
Women and Children from
HIV/AIDS
ARTHUR J. AMMANN, MD
LETHAL DECISIONS

ecisions
LETHAL
D
The Unnecessary Deaths of
Women and Children from
HIV/AIDS
ARTHUR J. AMMANN, MD
Vanderbilt University Press
Nashville
© 2017 by Vanderbilt University Press
Nashville, Tennessee 37235
All rights reserved
First printing 2017
This book is printed on acid- free paper.
Manufactured in the United States of America
Library of Congress Cataloging- in- Publication Data on file
LC control number 2016007503
LC classification number RC606.5
Dewey class number 362.19697/92— dc23
LC record available at lccn.loc.gov/2016007503
ISBN 978– 0-8265–2124–8 (hardcover)
ISBN 978– 0-8265–2125–5 (paperback)
ISBN 978– 0-8265–2126–2 (ebook)
TO MY WIFE who throughout the thirty- five years of the HIV/AIDS epidemic stood
by me, encouraging, listening, and understanding the human toll of a new epidemic
that unfolded before us. She partnered with me to establish Global Strategies for HIV
Prevention, addressing issues of injustice and inequity among vulnerable women and
children in poor countries. She shared in the compassion to help those whose voices could
not be heard yet suffered so much. To my children, Kimberly and Scott, who grew up
listening to conversations about the HIV/AIDS epidemic and who balanced patience with
encouragement for a father who often traveled away from home. To my grandchildren,
Sophia, Caleb, Leland, and Avery, who listened to stories about the HIV/AIDS orphaned
children and did what they as children could do to help. They were constant reminders of
how precious the life of each child must be.
TO THE MOTHERS who always held out hope that the prevention and treatments that
were transforming the lives of those in wealthy countries would reach them to save their
lives and the lives of their infants. To the thousands who participated in clinical research
studies, always giving of themselves and hoping that their participation would help those in
their communities and around the world. This book is to honor their disappointments, their
lives, their courage, and their sacrifices.

CONTENTS
Foreword . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ix
Acknowledgments . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . xi
THE FIRST PERIOD: FROM DISCOVERY TO SOLUTIONS, 1981 TO 1996
Part 1: The Beginning . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1
1 . Pediatric HIV/AIDS . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3
2 . AIDS and Blood . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 13
3 . The Blood Banking Industry in Denial . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 17
4 . A Personal Tragedy . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 23
5 . Finding the Cause of AIDS . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 29
6 . Saving Lives: Preventing HIV Infection of Infants . . . . . . . . . . . . . . . . . . . . . . 34
7 . The Denialist Movement . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 40
Part 2: Pediatric AIDS Becomes a Reality . . . . . . . . . . . . . . . . . . . . . . . . . 51
8 . Born of Necessity: The Pediatric AIDS Foundation . . . . . . . . . . . . . . . . . . . . . 53
9 . A Priority at Last: Pediatric HIV/AIDS . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 63
10 . A Living Legacy: Elizabeth Glaser Scientist Awards . . . . . . . . . . . . . . . . . . . . 79
11 . The Ariel Project: The Best, the Brightest, and the Committed . . . . . . . . . . . . 84
12 . Too Urgent to Wait: The American Foundation for AIDS Research . . . . . . . . . 90
13 . What about the Rest of the World? The First Conference on Global
Strategies for the Prevention of HIV Transmission from Mothers to Infants . . . 99
14 . Ensuring That Voices from Low- Income Countries Are Heard . . . . . . . . . . . . 105
15 . A Call to Action: The Second Conference on Global Strategies for the
Prevention of HIV Transmission from Mothers to Infants . . . . . . . . . . . . . . . . . 110
16 . Now Just Go and Do It: The Third Conference on Global Strategies for the
Prevention of HIV Transmission from Mothers to Infants . . . . . . . . . . . . . . . . . 121
17 . From a Small Beginning to Major Prevention and Care Programs . . . . . . . . . . 135
18 . Why Wait? Start Now . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 152
19 . Going the Last Mile: The Obscure, the Neglected, and the
Desperately Needy . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 160
THE SECOND PERIOD: FROM ANSWERS TO INSTITUTIONAL FAILURES, 1996 TO 2016
Part 3: Unexpected Obstacles: Institutions,
Therapeutic Denialism, and Treatment Guidelines . . . . . . . . . . . . . . . . . 163
20 . Pediatric AIDS and Drug Development . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 165
21 . Acronyms and Legislative Redundancy . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 176
22 . Facts Speak Louder Than Words: Examining Efforts That Failed . . . . . . . . . . 181
23 . Guidelines Can Become Rules . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 191
24 . Treatment Guidelines: Not without Risks . . . . . . . . . . . . . . . . . . . . . . . . . . . . 200
Part 4: Stalled: Losing Sight of the Mission . . . . . . . . . . . . . . . . . . . . . . . 209
25 . Damn the Ethics, Full Speed Ahead . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 211
26 . The Tyranny of Research . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 220
27 . Misspent Dollars . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 233
28 . For Better or for Worse? The Pediatric AIDS Clinical Trial Group Expands . . . 242
29 . Turning the Corner . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 246
Part 5: Ending the Pediatric HIV/AIDS Epidemic . . . . . . . . . . . . . . . . . . . . 253
30 . What Went Well . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 255
31 . PEPFAR to the Rescue . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 265
32 . Solutions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 272
Conclusion . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 293
Timeline: Pediatric HIV/AIDS Milestones and Events . . . . . . . . . . . . . . . . . . . . . . . 297
Acronyms . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 311
Notes . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 315
References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 339
Index . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 363
viii
FOREWORD
In the aftermath of cataclysmic events a witness often comes forth to tell us how it came
about and point to pivotal opportunities that would have minimized its impact. Dr.
Arthur Ammann, the doctor who identified the first cases of AIDS in children and the
transmission of HIV by blood transfusion, is such a witness.
Lethal Decisions is his highly personal account of an ongoing disaster, the global
HIV epidemic in children and mothers, and the world’s fatally flawed response. Dr.
Ammann was uniquely positioned for this role. A medical school professor and expert
in the diagnosis of immune deficiencies, he was there at the beginning of AIDS and
stayed involved for the life of the epidemic. In my opinion he is the successor to the late
Elizabeth Glaser as the conscience of the pediatric HIV epidemic.
Before meeting him in the context of AIDS, I knew of him through his contribu-
tions to the medical literature in the area of inherited immunodeficiency diseases. Dr.
Ammann and others of his generation were my role models in choosing to become an
immunologist. Lethal Decisions chronicles his odyssey from doctor and laboratory sci-
entist to the medical and geopolitical frontlines of the HIV epidemic. His medical care
of some of the first patients and their mothers led to an intense and enduring commit-
ment. Present at every pivotal moment in the history of pediatric AIDS, his goals were
common to those of many doctors in the field: understanding the differences between
pediatric and adult AIDS, discovering how to prevent mother-to-child transmission,
and learning how to treat children who were already infected. He was instrumental in
the establishment of non-profits that addressed these questions, including the Elizabeth
Glaser Pediatric AIDS Foundation with its novel Think Tank retreats and the American
Foundation for AIDS Research (amfAR).
The 1990s were a time of milestones in HIV treatment and prevention. In the study
known as ACTG 076, published in 1994, mother-to-child transmission of HIV was
reduced by a dramatic 60 percent, and at the 1996 International AIDS Conference in
Vancouver, British Columbia, it became clear that HIV could be suppressed with pro-
tease inhibitors as part of an antiviral cocktail. This discovery led to a marked decline in
the number of deaths from AIDS in the developed world.
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