Genocide by Denial How Profi teering from HIV/AIDS Killed Millions Peter Mugyenyi FOUNTAIN PUBLISHERS Kampala Fountain Publishers P. O. Box 488 Kampala - Uganda E-mail: [email protected] publishing@ fountainpublishers.co.ug Website: www.fountainpublishers.co.ug Distributed in Europe and Commonwealth countries outside Africa by: African Books Collective Ltd, P. O. Box 721, Oxford OX1 9EN, UK. Tel/Fax: +44(0) 1869 349110 E-mail: [email protected] Website: www.africanbookscollective.com Distributed in North America by: Michigan State University Press 1405 South Harrison Road 25 Manly Miles Building East Lansing, MI 48823-5245 E-mail: [email protected] Website: www.msupress.msu.edu © Peter Mugyenyi 2008 First published 2008 All rights reserved. No part of this publication may be reproduced, stored in a retrieval system or transmitted in any form or by any means electronic, mechanical, photocopying, recording or otherwise without the prior written permission of the publisher. ISBN 978-9970-02-753-8 Cover photograph: Ugandan school children hold candles in memory of thousands of people who have died of HIV/AIDS. Privacy Policy Careful consideration has been given to safeguard individual privacy. Accordingly, unless the information was already in public domain or voluntary consent was fi rst obtained, no real names or specifi c identities of patients alive or dead have been used. Also, some details of events that may apparently lead to public exposure of individuals have been changed without altering the essential facts of the story. Dedication This book is dedicated to the memory of all people who died of AIDS. Singled out for special remembrance are millions of men, women and children who would have lived, but died simply because they were too poor to pay the price of the life-saving drugs. Over 40 million infected with HIV virus; The vast majority are African in their prime, Of which 25 million are dead and still counting….. 8000 deaths per day. Yet these deaths are not inevitable! “Obu niburwaireki oburikwita omushaija, bukataho omukazi n’abaana enju bakagisiba? Pe! Translation: “What kind of a monster disease is this that kills a man, his wife and all their children, thus closing the entire homestead?” Yudesi Ndimbirwe, Author’s mother, 1989 Contents Acknowledgements vii Introduction ix 1 Ingredients of a Disaster 1 The Gathering Storm 1 The Rude Welcome Home 6 The Baptism of Fire 8 Facing up to the new threat 20 Chaos and melodrama 25 The Birth of AIDS 38 The AIDS Time Bomb 42 2 Times of Despair 55 Non-stop Funerals 55 The Opium of the Terrified 63 The Face of Despair 68 Heartbreak Orphans 76 Voodoo Cures 85 When the Vultures Come Flying In 91 The Turning Point 94 3 AIDS Dilemmas 101 AIDS and Prejudice 101 The Death Sentence 113 Rich Orphan, Poor Orphan 133 Survival is for the Rich 149 Africa Pays with Blood 155 Tragic Denial 163 The Moral Imperative 167 4 Dubious Schemes 176 Do Patents Really Kill? 176 Giving a Rope to the Poor 186 v vi Genocide by Denial The Poor Man’s AIDS Drug 199 UNAIDS ART drugs Access Initiative 204 Accelerated Access Initiative 210 Saving the Little Ones. 215 The Nevirapine Crisis 228 5 Gunning for a Solution 236 Taking the Bull by the Horns 236 Survival of the Most Competitive 248 Call to Washington 255 Hitting the Ground Running 268 Epilogue 275 The Next Inferno 275 References 288 Index 293 Acknowledgements I can’t possibly thank all the people who helped me in my work in the area of AIDS, which is the basis of this book. However, I would like to first of all thank my family, especially my children: Jimmy, Fred, Michelle, Denise, and Martin. I sincerely thank Ernest Rusita, for his mentorship and good advice. I am indebted to Liz Paren, for taking time to review the first draft and making useful suggestions. I thank Mark Harrington for his encouragement, and David Blumenkrantz, for his advice. I am also grateful to Lera Munati for urging me to pick up the pen, and Anthony Canavan for his help in shaping the book. For a variety of reasons I acknowledge with thanks and gratitude the following people: Ben Mbonye, Jesse Kagimba, Gregg Gonsalves, Amy Cunningham, Rob Cunane, Sam Rwakojo, Fred Makoha, Mohamed Kibirige, and Ceppie Merry. I am also greatly appreciative of Tony Fauci, and Mark Dybul for their role in changing the AIDS situation in Africa from one of gloominess and desperation to one of hope and optimism. I am greatly indebted to all my colleagues at the Joint Clinical Research Centre, (JORC) Kampala, especially Samson Kibende, Cissy Kityo, Francis Ssali, Stefano Tugume, John Oloror, Rose Byaruhanga, Mary Mulindwa, Santrina Batto, to mention but a few for standing shoulder to shoulder with me during the most difficult times, when we jointly tried to find ways and means of finding a solution to the AIDS scourge in Uganda. Whatever I may have achieved would never have been possible without their help and participation I reserve my very special thanks to all my patients, first and foremost, because they are the reason that I am a doctor. I thank especially all those that were affected or infected by HIV/AIDS for their patience and resilience despite the pain of it all, while faced with this century’s most vicious plague and denial of help. It is my sincere hope that this record will contribute to the deliverance of future patients faced with similar diseases of mass devastation. vii viii Genocide by Denial Lastly I recognize with due respect the vital role that President Yoweri Museveni played in the control and treatment of AIDS in Uganda. Most importantly I thank him for his timely intervention and leadership which helped to save numerous lives. His foresight and strategic vision in starting the JCRC created the opportunity for me to add my humble contribution. Peter Mugyenyi Kampala 2008 Introduction It was just unthinkable! Even in their wildest dreams, no resident of the sleepy rural south western Ugandan district of Rakai could have possibly imagined that this mystifying new affliction, which cropped up insidiously in their midst way back in 1980, would metamorphose into arguably the most catastrophic tragedy in the entire human history. “Was it a curse, witchcraft, or a disease?” the bamboozled villagers wondered. Nobody could figure out exactly where it came from and why it crept in to spoil the usually quiet village life of Kasensero, and neighbouring areas. The usual daily highlights were the early morning wake-up cockerel call, and the ravving engine noises of heavily-loaded long distance trucks that frequently made overnight stops in the area’s small trading centres on their way from the coastal ports to the neighbouring countries. However, in time, putting one and one together, the mystified inhabitants increasingly discerned an emerging pattern among the victims. They first noticed that the mysterious affliction seemed to be confined to only a few scattered locations in the district. Then they increasingly noticed that it appeared to choose some particular persons, who adopted certain peculiar lifestyles. The early sufferers were by and large relatively well-off by the village standards. The poor, who were the vast majority, initially escaped almost unscathed. These observations were quite reassuring for everyone else outside the perceived vulnerable group, who for a little while thought they were out of harm’s way. But alas, this ray of hope was soon dimmed, as the rude intruder turned on its head. With increasing alarm, the villagers discovered that in reality, contrary to earlier observations, the queer disease affected persons of different walks of life. But the worse was still to come. For when the initially nameless disease exploded onto the general public, leaving a trail of blood the entire community froze in terror. No one felt safe any ix x Genocide by Denial more. Then whispers started about a curse and bad omen hovering over the area. Terror stirred up the community, and inevitably there was a frantic counter-reaction that brought out the community health watchdogs in full strength. They included witchdoctors, herbalists, various religious leaders, spiritual healers and Western doctors, all fretfully trying to find a remedy. New and descriptive names for the lethal plague were coined based on the observed signs and symptoms the tortured victims suffered before they invariably succumbed. Inexorably, the death toll rose from a mere trickle to hundreds, then on to thousands, to hundreds of thousands - and still counting, as the scourge spread ruthlessly, eventually reaching all parts of the country. When the connection was confirmed between penetrative sex and the new disease, and that all victims inevitably died, then a new form of torment was added to the awful physical pain in the form of stigma fuelled by sheer terror. Stigma made the already dreadful situation of the victims worse - much worse. Sufferers hid from the prying eyes of the public but not always successfully. In some cases they could not even share their predicament with friends and family, mainly because they feared rejection. Many affected families wrapped their hands around their faces in “shame”. Holier-than-thou religious leaders preached about unrepentant sinners being responsible for the scourge. Victims sought solace and salvation of a different kind from the many new religious sects that sprang up specifically to assuage or just exploit the desperation. When the disease that started among the relatively well-to-do entered the peasant and poverty-stricken populations it found a fertile breeding-ground which, right from the beginning, guaranteed mayhem. It defied even the most ingenious scientific interventions, and relentlessly unfolded into mankind’s most catastrophic pandemic in living memory.