by Piot, Peter
NO TIME TO LOSE
A Life in Pursuit of Deadly Viruses
PETER PIOT
WITH RUTH MARSHALL
W. W. NORTON & COMPANY
NEW YORK • LONDON
©
Map by Jay Dowle
Our responsibility is historic, for when the history of AIDS and the global response is written, our most precious contribution may well be that at the time of plague we did not flee; we did not hide; and we did not separate.
—JONATHAN MANN
Rust roest.
—FLEMISH PROVERB
In the course of human history, there has never been a greater threat than the HIV/AIDS epidemic. Our attention to this issue cannot be distracted or diverted by problems that are apparently more pressing. History will surely judge us harshly if we do not respond with all the energy and resources that we can bring to bear in the fight against HIV/AIDS.
—NELSON MANDELA, closing ceremony of the
XV International AIDS Conference,
Bangkok, Thailand, July 16, 2004
CONTENTS
Preface
• PART ONE •
CHAPTER 1: A Blue Flask of Virus
CHAPTER 2: Adventure at Last
CHAPTER 3: The Mission in Yambuku
CHAPTER 4: Ebola
CHAPTER 5: A Pseudo Outbreak and a Helicopter
CHAPTER 6: The Big Team
• PART TWO •
CHAPTER 7: From Ebola to Sex and the Transmission of Infection
CHAPTER 8: America and Back
CHAPTER 9: Nairobi
• PART THREE •
CHAPTER 10: A New Epidemic
CHAPTER 11: Projet SIDA
CHAPTER 12: Yambuku One More Time
CHAPTER 13: The Unfolding of an Epidemic
CHAPTER 14: Changing of the Guard
• PART FOUR •
CHAPTER 15: An International Bureaucrat
CHAPTER 16: Sharks in the Water
CHAPTER 17: Getting the Basics Right
CHAPTER 18: The Lesson of the Chameleon/Bringing Together the Brilliant Coalition
CHAPTER 19: The Tipping Point
CHAPTER 20: The Price of Life
CHAPTER 21: A War Chest for AIDS
CHAPTER 22: An Unfinished Agenda
Epilogue
Acknowledgments
Index
Photo Insert
PREFACE
SIXTY-TWO MAY BE a bit young for writing a memoir. However, I felt that the distance between events and writing was long enough, but yet not too hazy, to tell my story of two of the most extraordinary adventures of our time: the discovery of Ebola hemorrhagic fever and AIDS and the world’s response to them. I was a privileged witness and actor in the history of two previously unknown viruses—enough material for two different books. Whereas the unraveling of the first known epidemic of Ebola hemorrhagic fever in Africa was my initiation into scientific discovery, even life-threatening adventure, and into the world of what is now called global health, the AIDS epidemic forced me to confront the extreme complexity of health and disease, and to learn the hard way the realities of big and small politics. Already as a child I wanted to discover the world beyond my village, and combined with a deep curiosity for all kinds of scientific inquiry, this led to paths that I could not have imagined at the beginning of my adult life, which at times was a whirlwind.
Both epidemics show the enormous potential and real limitations of science to solve today’s health problems, such as through the discovery of life-saving antiretroviral drugs, but also the failure to produce a vaccine over twenty-five years after the discovery of the human immunodeficiency virus—not to forget the major role that societal determinants and lifestyle play in emerging diseases, be they infectious in origin such as Ebola and HIV or the current tsunami of obesity, diabetes, and cardiovascular disease. Who would have predicted that the end of the last millennium would see the emergence of new pathogens and epidemics, when the medical world thought it had it all under control—at least in the wealthier part of the world? Both Ebola and HIV infection continue to exist, probably for generations to come, and in contrast to some overoptimistic scenarios, I don’t believe the end of AIDS is in sight. The story of new viruses is also not over, and it is safe to predict that more pathogens will emerge and affect us in always faster and more global ways.
In the Belgian surrealist tradition of painter Rene Magritte naming his painting of a pipe Ceci n’est pas une pipe, “ceci n’est pas une autobiographie,” this is not an autobiography—as my journey is hopefully not finished yet—nor is this a doctoral thesis about the history or the politics of the two epidemics with hundreds of bibliographic references. This is a memoir of discovery, selected moments, people, and developments, seen through one lens—my own experiences—with no ambition to give a complete picture. Scholars not as involved as I are better placed to write those books.
At times I was an outbreak detective in the heart of Africa, a scientist studying antimicrobial resistance in bacteria or the genetic diversity of HIV, a desperate clinician caring for patients when there was no antiretroviral treatment, a researcher and public health practitioner designing prevention and treatment programs, a UN official leading a complex multilateral organization in eighty countries and spearheading UN reform, a patient diplomat negotiating political resolutions and price reductions of antiretroviral drugs, a stubborn campaigner reaching out to the powerful of this world and bringing AIDS awareness to unexpected places, a frustrated fighter of bureaucrats, an activist from the beginning . . . and so often all of the above simultaneously, always in connection with numerous other actors. My memoir reflects on all these incarnations.
This book is also a personal chronicle of the still unfolding AIDS pandemic—the most devastating epidemic in modern times. It narrates how the face of AIDS has changed dramatically thanks to science, politics, and the efforts of thousands of people, putting in perspective the suffering of more than 60 million who are living with HIV or lost their lives from AIDS. It gives an inside view of the daily life and struggles in the United Nations system, where as head of UNAIDS I served under three very different secretaries-general. I saw how the UN can be at its best and be effective when it convenes multiple countries and players around a very concrete project such as confronting AIDS, but also how the UN can be synonym of inefficiency when its more than 190 member states or its organization or civil servants do not want action or let process dominate.
Perhaps most important, I have seen over and over again how a catastrophe like AIDS brings out the best and the worst in the human species—regardless of whether a person is well educated or illiterate. I had to deal with physicians refusing to care for AIDS patients; clergy rejecting them from churches or campaigning against condoms; homophobic politicians and public health officials; drug control authorities declaring war on drug users, not on drugs; and midlevel UN system bureaucrats who were only interested in their own turf. However, above all, I met incredibly passionate and compassionate men and women trying to save lives, fighting for justice, and searching for scientific solutions. I had the privilege to work with so many unsung heroes of the AIDS struggle: groups of people living with HIV, visionary politicians, generous philanthropists, pharmaceutical innovators, caring clergy, and my tireless fellow scientists, activists, clinicians, and program managers across the world—my global community for the last thirty years. These experiences largely compensated for the numerous brain-killing meetings I had to endure during my tenure at UNAIDS, where I learned not to be guided by that modern plague—the quarterly result, the short-term view—but to fo
cus on the ultimate goal of saving as many lives as possible. And along the way I got this big bonus, as I continued to discover myself a bit. That is why this memoir is in the first instance about people and their institutions and movements, not just about viruses.
• PART ONE •
CHAPTER 1
A Blue Flask of Virus
ON THE LAST Tuesday in September 1976 my boss at the microbiology lab was alerted that a special package was on its way to us from Zaire. It was flying in from Kinshasa: samples of blood from an unusual epidemic that seemed to be stirring in the distant Équateur region, along the river Congo.
Nothing quite like this had happened in the two years I had so far been working in a junior position at the lab in Antwerp, Belgium. But I knew it was part of the job. We sometimes took in strange samples of bodily fluids and tried to work out what they were. Our lab was certified to diagnose all kinds of diseases, including arbovirus infections like yellow fever, and the working hypothesis for this epidemic was reported to be “yellow fever with hemorrhagic manifestations.”
I never actually worked with any suspected yellow fever. It wasn’t every day we received samples from as far away as equatorial Zaire. And it was clear this was an unusual sample, and that something pretty curious had occurred, because several Belgian nuns apparently died of the disease even though their vaccinations were completely up to date.
The next day—September 29—the package arrived: a cheap plastic thermos flask, shiny and blue. I settled down with Guido Van Der Groen—a shy, funny, fellow Belgian aged about thirty, a few years older than I—and René Delgadillo, a Bolivian postdoc student, to open it up on the lab bench. Nowadays it makes me wince just to think of it. Sure, we were wearing latex gloves—our boss insisted on gloves in the lab but we used no other precautions, no suits or masks of any kind.
We didn’t even imagine the risk we were taking. Indeed, shipping those blood samples in a simple thermos, without any kind of precautions, was an incredibly perilous act. Maybe the world was a simpler, more innocent place in those days, or maybe it was just a lot more reckless.
Unscrewing the thermos, we found a soup of half-melted ice: it was clear that subzero temperatures had not been constantly maintained. And the thermos itself had taken a few knocks, too. One of the test tubes was intact, but there were pieces of a broken tube—its lethal content now mixed up with the ice water—as well as a handwritten note, whose ink had partially bled away into the icy wet.
It was from Dr. Jacques Courteille, a Belgian physician who worked at the Clinique Ngaliema in Kinshasa. He described the thermos’s contents as two vials, each containing 5 milliliters of clotted blood from a Flemish nun who was too ill to be evacuated out of Zaire.* She was suffering from a mysterious epidemic that had so far evaded identification, possibly yellow fever.
I was still trying to find my way in the labyrinth of infectious diseases research, and this kind of thing made my heart beat faster. As a kid, growing up in the flat countryside of Flanders—the coastal plain between Holland and France—I was always drawn to tales of exotic adventures far away. I read the comic-strip explorations of Tintin, a Belgian boy with a quiff and a little dog made world famous by Steven Spielberg. There were also the Karl May books—great florid escapades set in the American Far West—and the swashbuckling scientific fantasies of Jules Verne. I devoured biographies of the great nineteenth-century explorers: Henry Morton Stanley, who explored Africa, and Robert Burke, who led an expedition of camels across Australia in 1860, and Richard Burton and John Speke, who went to the Great Lakes of Africa to search for the source of the Nile.
I was a bit of a loner as a kid. Although we lived in a then small farming village first mentioned in 1036, Keerbergen, where everyone spoke the local Flemish dialect, my parents insisted that we speak standard Dutch at home—what is known, in Flanders, as “general civilized Dutch.” My father was a staunch supporter of Flemish nationalism, and he felt that indulging in separate dialects would divide the Flemish people and prevent us from rising from the mud. We needed to unite and become as smart as the French-speaking Belgians, who had dominated the country since its independence in 1830. But very few Flemish kids ever grew up speaking standard Dutch; that was a literary, formal language, used only for school. So sure, it gave me an advantage with matters academic, but it also meant that my siblings and I grew up rather separate from our peers.
I often cycled, alone, the three miles from Keerbergen to the village of Tremelo, where a white, L-shaped farmhouse with green shutters had been transformed into a small museum. This was the birthplace of Father Damien, a Catholic missionary who was the local claim to fame, because of his heroic work with lepers in the islands of Hawaii in the nineteenth century. In those days leprosy was thought to be highly contagious, and it was incurable. Thousands of Hawaiians who contracted the disease were removed to an isolated peninsula on Molokai where they eked out a brief existence in squalor and pain. Father Damien volunteered to serve them, though this potentially was a death sentence; and he sent back hundreds of artifacts and images before dying from leprosy himself. On those cold afternoons, with the rain lashing down on the fields outside, I stared mesmerized at pictures of leprosy patients with horribly deformed faces, feet, and hands. I was enraged by the stories of their rejection and discrimination, and full of romantic admiration for the heroism of Father Damien, who braved the prejudices of society and risked his life to serve. Despite my Catholic upbringing, I had no urge to become a missionary, but this solitary, repeated exposure to a forgotten disease, social injustice, and the mesmerizing trinkets of faraway cultures quickened in me a desire to help the poor and to explore the world.
That’s really why I ultimately chose medicine—though my initial choice for university studies was engineering because I loved mathematics and solving practical problems, which I did for a few months in Ghent. Those were my two main desires: to work for greater social justice and to travel. Medicine dovetailed with my childhood passion for science; a medical degree was a passport to work anywhere in the world; and ill-health was surely the worst kind of injustice, so as a doctor, you could really be useful. But when, after seven years’ study at the medical faculty in Ghent, I broached the idea of specializing in infectious diseases, the unanimous verdict of my professors was that I would be a fool to do it. There were still a few infectious illnesses around, of course, plus the occasional outbreak of a nasty new contagious disease in some distant, benighted place. (Although I had certainly never heard of them, Congo-Crimea fever was first identified in 1956, for example, and Lassa fever first appeared in 1969.) But in general, infectious diseases weren’t considered interesting or cutting-edge in 1974. They had just about all been conquered by advances in antibiotics and vaccines.
My professor of social medicine grabbed my shoulder firmly, to make sure I was paying attention. “There’s no future in infectious diseases,” he stated flatly, in a tone that bore no argument. “They’ve all been solved.”
But I wanted to go to Africa. I wanted to save lives. And it seemed to me that infectious disease might be just the ticket and full of unresolved scientific questions. So I ignored him.
I don’t really know why I had developed this fascination for Africa. My parents were hardworking people. My father was an economist, a senior civil servant promoting export of Belgian agriculture in the nascent European Union, and my mother worked in her father’s construction business. They came from village people, bloody-minded peasants, not the bankers or silversmiths and weavers of the Flemish guilds that made our region famous in the Middle Ages. In a region that has been churned up and snarled over by greater nations since time immemorial, we inhabited a tiny world of small, dim, villages and fields under a leaden sky. Just about every Sunday of my childhood, my parents took us to our grandparents’ houses; until I was eight, we had all lived within four miles of each other. The women of our family were all great cooks, and on my father’s side the men were all serious drinkers.
/> Nobody from my family had ever traveled to the Belgian Congo, the private kingdom of King Leopold II that was to become independent as Zaire. My parents and grandparents saw colonial settlers as lazy good-for-nothings who lived off other people’s labor. “Rest is rust” was the motto of my great-grandpa’s workers’ bicycling team, the Downhill Riders of Wijgmaal, and its stiff old blazon, embroidered in 1905, hangs even now in my study at home.
GUIDO AND RENÉ picked out the one remaining test tube of blood from the thermos and set to work. We needed to look for antibodies against the yellow fever virus, and other causes of hemorrhagic or epidemic fever such as typhoid. To isolate any virus material, we injected small amounts of the blood samples into VERO cells, an easily replicable cell lineage that is used a lot in labs. We also injected some into the brains of adult mice and newborn baby mice. (I never liked this aspect of the work. Sometimes we needed to inject patient tissue into the testicles of rats, to isolate Mycobacterium ulcerans, the cause of Buruli ulcers, and it made me cringe.)
All this work was done with no more precautions than if we had been handling a routine case of salmonella or tuberculosis. It never occurred to us that something far more rare and much more powerful might have just entered our lives.
In the next few days, the antibody tests for yellow fever, Lassa fever, and several other candidates all came up negative, and it seemed likely that the samples had been fatally damaged by their transportation at a semithawed temperature. We bustled nervously around the mice and checked our cell cultures four times a day instead of two. On the weekend, each of us popped in to check the samples. All of us, I think, were hoping something would grow.
Then it happened. On Monday morning, October 4, we found that several adult mice had died. Three days later all the baby mice had also died—a sign that a pathogenic virus was probably present in the blood samples that we had used to inoculate them.