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Lethal Decisions

The Unnecessary Deaths of Women and Children from HIV/AIDS

Arthur J. Ammann

Publication Year: 2017

This first-person account by one of the pioneers of HIV/AIDS research chronicles the interaction among the pediatric HIV/AIDS community, regulatory bodies, governments, and activists over more than three decades. After the discovery of AIDS in a handful of infants in 1981, the next fifteen years showed remarkable scientific progress in prevention and treatment, although blood banks, drug companies, and bureaucrats were often slow to act. 1996 was a watershed year when scientific and clinical HIV experts called for treating all HIV-infected individuals with potent triple combinations of antiretroviral drugs that had been proven effective. Aggressive implementation of prevention and treatment in the United States led to marked declines in the number of HIV-related deaths, fewer new infections and hospital visits, and fewer than one hundred infants born infected each year.

Inexplicably, the World Health Organization recommended withholding treatment for the majority of HIV-infected individuals in poor countries, and clinical researchers embarked on studies to evaluate inferior treatment approaches even while the pandemic continued to claim the lives of millions of women and children. Why did it take an additional twenty years for international health organizations to recommend the treatment and prevention measures that had had such a profound impact on the pandemic in wealthy countries? The surprising answers are likely to be debated by medical historians and ethicists.

At last, in 2015, came a universal call for treating all HIV-infected individuals with triple-combination antiretroviral drugs. But this can only be accomplished if the mistakes of the past are rectified. The book ends with recommendations on how the pediatric HIV/AIDS epidemic can finally be brought to an end.

Published by: Vanderbilt University Press

Cover

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Half Title, Title Page, Copyright, Dedication

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Contents

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pp. vii-viii

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Foreword

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pp. ix-x

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. ...

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Acknowledgments

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pp. xi-xiv

It would be a dishonor if I did not first acknowledge the women and children of the epidemic who suffered so greatly from a disease that they too often did not understand. They volunteered for research that often benefited others more than it benefited them. In spite of their suffering, they continued to care for their families while embracing the hope that a means to end the HIV/AIDS epidemic would be found. ...

I. The Beginning

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pp. 1-2

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1. Pediatric HIV/AIDS

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pp. 3-12

It was June of 1981 when the scientific and medical communities first read about a mysterious new immunodeficiency disorder seen in young gay men (Gottlieb et al. 1981). The disease was first reported by Dr. Michael Gottlieb, a physician and immunologist at UCLA, who had identified a number of previously healthy young men who had suddenly developed a variety of opportunistic fungal, viral, and protozoal infections. ...

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2. AIDS and Blood

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pp. 13-16

In 1982, CDC investigations provided additional support for the hypothesis that AIDS was transmitted through blood products. The CDC reported that hemophiliac patients who had received commercial plasma concentrated from multiple donors were developing AIDS (1982d). This caused some suspicion, but as commercial plasma was being administered in multiple doses to thousands of hemophiliacs each year, ...

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3. The Blood Banking Industry in Denial

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pp. 17-22

Even before I published the groundbreaking report in Lancet, linking blood transfusions and AIDS and hinting that transfusion of blood products was potentially unsafe, resistance from the blood banking industry was emerging. Within a year of the 1982 report, the CDC had received hundreds of reports of conditions resembling AIDS in patients who had undergone blood transfusions for elective surgeries ...

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4. A Personal Tragedy

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pp. 23-28

Late on the night of October 12, 1983, I received a desperate phone call from a couple named Helen and Jerry Kushnick. The Kushnicks had been referred to me by their cousin, who had been my professor at the New Jersey College of Medicine. The Kushnicks emotionally explained that their three-year-old son Sam was critically ill in the Intensive Care Unit at Cedars-Sinai Hospital in Los Angeles. ...

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5. Finding the Cause of AIDS

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pp. 29-33

The most crucial piece in the puzzle of the AIDS epidemic was identifying the cause of AIDS, which would allow scientists to make an accurate diagnosis of the disease, understand how the disease was spread, and develop methods for prevention and treatment. The symptoms and physical findings that the scientific and medical community had observed strongly suggested that AIDS was caused by a virus that attacked the patient’s immune system, ...

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6. Saving Lives: Preventing HIV Infection of Infants

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pp. 34-39

Within weeks of my 1982 report of the first child who had acquired AIDS via blood transfusion, the CDC’s MMWR reported four cases of children with immunologic features and clinical histories consistent with the acquired immune deficiency syndrome (1982a, b). Included was one of the four female siblings I had studied in 1982. ...

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7. The Denialist Movement

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pp. 40-50

Denialism took many forms, from scientists denying that HIV was the cause of AIDS, to governments denying that their countries had an HIV/AIDS epidemic, to individuals denying how they contracted HIV. The denialist movement was important to the pediatric AIDS epidemic, primarily because it had a profoundly disproportionate negative impact on HIV-infected pregnant women and their infants worldwide. ...

II. Pediatric AIDS Becomes a Reality

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pp. 51-52

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8. Born of Necessity: The Pediatric AIDS Foundation

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pp. 53-62

On September 21, 1988, I received an unexpected and urgent phone call from Dr.  Michael Gottlieb, the physician who had originally discovered AIDS in 1981 (Gottlieb et al. 1981). I knew Gottlieb from his position on the Scientific Review Board of the American Foundation for AIDS Research (amfAR), where I was responsible for reviewing pediatric research grants. ...

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9. A Priority at Last: Pediatric HIV/AIDS

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pp. 63-78

The HIV/AIDS epidemic revolutionized how international public health crises were approached, including prioritizing areas of research and then finding the funds to conduct that research. Previously, many foundations had been formed in response to a public health crisis or to find answers to the prevention and treatment of specific diseases. ...

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10. A Living Legacy: Elizabeth Glaser Scientist Awards

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pp. 79-83

In 1994, despite her initial hesitation and discomfort, Elizabeth finally agreed to my repeated suggestion that her legacy take the form of an award named after her to assist young and promising researchers studying HIV/AIDS. It had also taken great effort to convince the foundation’s board of directors to commit to funding a scientist as well as laboratory support for a full five years, ...

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11. The Ariel Project: The Best, the Brightest, and the Committed

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pp. 84-89

It would be difficult to decide which of the thirty-two Think Tanks, conducted from 1990 to 1998, had the greatest impact on the pediatric AIDS epidemic. The Think Tanks brought together the world’s most accomplished scientists and provided them with an opportunity to express their ideas and identify needed areas of research as well as obstacles that prevented progress in halting the pediatric AIDS epidemic. ...

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12. Too Urgent to Wait: The American Foundation for AIDS Research

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pp. 90-98

Even though HIV had been discovered as the cause of AIDS only two years after AIDS was first described in 1981, and a test to diagnose HIV infection was approved in 1985, there was still not much known about how HIV entered the human body and caused destruction of the immune system. In addition, much more needed to be known about HIV’s molecular virology if new, safe, and effective treatment was to be discovered. ...

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13. What about the Rest of the World?: The First Conference on Global Strategies for the Prevention of HIV Transmission from Mothers to Infants

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pp. 99-104

The 1994 discovery from the ACTG 076 clinical study that ZDV, when administered to HIV-infected pregnant women and their infants, could reduce HIV transmission by 60 percent precipitated an urgent call for quickly implementing the discovery (Connor et al. 1994). Recognizing that ZDV had the potential to eradicate perinatal HIV transmission in the United States drove the urgency ...

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14. Ensuring That Voices from Low-Income Countries Are Heard

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pp. 105-109

I had attended many international conferences dealing with global health problems that failed to provide adequate representation from the most affected people, so for the 1997 Global Strategies for the Prevention of HIV Transmission from Mothers to Infants conference, I deliberately invited more than half of the participants from low-income countries to be certain that they were well-represented and had an opportunity to present their views. ...

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15. A Call to Action: The Second Conference on Global Strategies for the Prevention of HIV Transmission from Mothers to Infants

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pp. 110-120

Thanks to the success of the first international conference on perinatal HIV transmission in 1997, there were unanimous pleas from clinicians around the world for a second conference that would present up-to-date information on progress being made in prevention of mother-to-child HIV transmission, as well as a call for workshops that would extend HIV-prevention education to health-care workers throughout the world. ...

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16. Now Just Go and Do It: The Third Conference on Global Strategies for the Prevention of HIV Transmission from Mothers to Infants

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pp. 121-134

Selecting the site for the third international conference was difficult. Although there were many cities in developing countries that were eager to host the conference for prestige purposes, the conference organizers and I wanted the chosen location to make a clear statement about why it was important to move forward rapidly with the treatment and prevention agenda. ...

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17. From a Small Beginning to Major Prevention and Care Programs

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pp. 135-151

The immediate outcome of the Faith Alive workshop in Nigeria was encouraging, but it was even more encouraging to observe what happened over the next several years. The model Global Strategies had employed to identify indigenous leaders was confirmed, and providing training and the tools to begin HIV prevention and care could be multiplied with additional resources beyond what Global Strategies had initially established. ...

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18. Why Wait? Start Now

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pp. 152-159

One of Global Strategies’ many strengths was its ability to identify issues that slowed progress in expanding HIV prevention and treatment in neglected geographic regions and populations. Unencumbered by conflicts of interest or control by institutions or governments and armed with an ability to make rapid adjustments and changes to meet urgent needs, ...

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19. Going the Last Mile: The Obscure, the Neglected, and the Desperately Needy

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pp. 160-162

It was one the most remote sites to get to. Reaching Kaziba, which lay about forty miles outside the city of Bukavu in the province of South Kivu, DRC, required leaving the paved streets of Bukavu and winding up the mountains on potholed dirt roads in two four-wheel-drive vehicles of dubious reliability. ...

III. Unexpected Obstacles: Institutions, Therapeutic Denialism, and Treatment Guidelines

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pp. 163-164

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20. Pediatric AIDS and Drug Development

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pp. 165-175

The impact of AIDS activism on drug development and approval was revolutionary. For decades the FDA enforced a complex drug regulatory process that had evolved for over one hundred years to protect individuals from unsafe and ineffective drugs. But some felt that it had gone too far. As AIDS activists, many of them HIV-infected, learned about the drug approval process, they were appalled at the delays. ...

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21. Acronyms and Legislative Redundancy

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pp. 176-180

The year 1997 would prove to be one of intense activity and focus on the legislative process of speeding up drug development for life-threatening diseases for children, or at least it was meant to be. When proposed changes to existing rules were published by the FDA in the Federal Register, they seemed encouraging. On closer examination, they were worrisome. ...

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22. Facts Speak Louder Than Words: Examining Efforts That Failed

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pp. 181-190

In 1996, Science writer Jon Cohen, referring to Clinton’s Presidential AIDS Drug Task Force, concluded, “AIDS Task Force Fizzles Out” (Cohen 1996). When the task force first convened in 1994, it seemed that it would work. The invitation to join came directly from President Clinton and was extended to major decision-makers from the US government, ...

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23. Guidelines Can Become Rules

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pp. 191-199

WHO is viewed as the major international organization dealing with global health and responsible for developing guidelines for the prevention and treatment of disease worldwide. The organizational structure is complex and its interaction with other UN organizations confusing. Their headquarters are based in Geneva, Switzerland, with six regional offices throughout the world and 147 individual country offices. ...

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24. Treatment Guidelines: Not without Risks

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pp. 200-208

Guidelines for the diagnosis and treatment of specific diseases are necessary to provide health-care professionals with information and direction on the best means of caring for their patients. All guidelines have, somewhere in their text, the statement that the guidelines are simply that—guides that are not meant to supplant individual decisions made by health-care professionals ...

IV. Stalled: Losing Sight of the Mission

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pp. 209-210

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25. Damn the Ethics, Full Speed Ahead

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pp. 211-219

Esther was a nineteen-year-old pregnant woman who lived in a rural village outside of a major city in sub-Saharan Africa. Her country ranks among the poorest in Africa. Esther became pregnant when she was coerced into having unprotected sex with an older man in exchange for food. After she told him she was pregnant, he disappeared. ...

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26. The Tyranny of Research

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pp. 220-232

Ethical principles for clinical research were codified following major ethical abuses. The National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research was formed in 1974 to address ethical abuses in research conducted in the United States. This commission issued the Belmont Report in 1979, which provided ethical guidelines for clinical research ...

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27. Misspent Dollars

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pp. 233-241

In 1983, the CDC assumed the primary responsibility for the Public Health Services Response to AIDS and began tracking the reports of new cases that were presenting primarily with opportunistic infections and Kaposi’s sarcoma (KS). But the CDC itself needed funding and was not a primary agency for funding academic researchers or institutions. ...

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28. For Better or for Worse?: The Pediatric AIDS Clinical Trial Group Expands

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pp. 242-245

The lack of an effective HIV vaccine facilitated the exploitation of infants who were born to HIV-infected women in low-income countries by providing researchers with a rationalization for inappropriately using these infants in order to evaluate vaccines of dubious efficacy and even those that had failed in adult clinical research studies. ...

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29. Turning the Corner

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pp. 246-252

Yes, there was a patient zero, but it was not really Gaëtan Dugas. The real patient zero is unknown. But Dugas, the person identified in Randy Shilts’s book And the Band Played On, and his sexual exploits beginning as a twenty-year-old Air Canada flight attendant from Toronto, remains instructive as to how HIV can spread. ...

V. Ending the Pediatric HIV/AIDS Epidemic

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pp. 253-254

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30. What Went Well

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pp. 255-264

On July 28, 2007, I was in Jinja, Uganda, standing on a grassy field surrounded by more than three hundred orphans waiting for Hope Walks to begin. Hope Walks was an event organized by Global Strategies and held in various cities to raise awareness and funds to support AIDS orphans in poor countries. The walk in Jinja was not a fundraiser but an event to call attention to the vast AIDS orphan crisis. ...

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31. PEPFAR to the Rescue

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pp. 265-271

The proposal came as a surprise to many: appropriate $15 billion over five years to combat the HIV/AIDS epidemic—the largest amount ever requested by anyone within the US government for global health. The person who made the proposal was also a surprise: President George W. Bush, who many in the activist/advocacy community presumed was unsympathetic to the global HIV/AIDS epidemic. ...

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32. Solutions

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pp. 272-292

All the scientific advances, tools, and knowledge necessary to begin the process of eradicating HIV in infants and children were in place by 1996. The pathway to ending the pediatric HIV/AIDS epidemic should have started then. Was it possible?—Yes! ...

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Conclusion

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pp. 293-296

The story told in this book is one of hope and caution. Never before in the history of modern medicine have such extraordinary advances been made so quickly in the prevention and treatment of an infectious disease as they have been in the HIV/AIDS epidemic. The epidemic taught us that remarkable progress can be made when those affected by a disease engage, support, and challenge scientists, ...

Timeline: Pediatric HIV/AIDS Milestones and Events

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pp. 297-310

Acronyms

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pp. 311-314

Notes

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pp. 315-338

References

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pp. 339-362

Index

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pp. 363-376


E-ISBN-13: 9780826521262
E-ISBN-10: 0826521266

Publication Year: 2017

OCLC Number: 940455420
MUSE Marc Record: Download for Lethal Decisions