No Time to Lose: A Life in Pursuit of Deadly Viruses (43 page)

EPILOGUE

O
N DECEMBER 26,
2008, I closed the door of my now empty office and walked for a last time between the huge Mary Fisher sculptures in the nine-meter-high glass lobby of the Zen UNAIDS building, with its hanging and floating rocks. I would miss greeting the guards in the morning, having a quick word with the devoted women and men in my office who kept me sane during all these years—Marie-Odile, Sylvie, Karen, Caroline, Anja, Julia, Julian, Ben, Roger, and Tim—and rushing by the thought-provoking contemporary African art in the corridors. My successor Michel Sidibé would take over in a few days, leading UNAIDS and the global AIDS effort to the next stage. Just as he would arrange the furniture in his office differently, he would manage the organization differently and communicate differently, reflecting the rich heritage of Mali, France, and UNICEF under Jim Grant. I was proud that sometimes succession planning works in the UN.

I was not down nor relieved to abandon the influential pulpit of the UN, nor the snake pit of multilateral politics, and I had no withdrawal symptoms from the relative power and comfortable support that went with the job (except when once again those hopeless IT breakdowns hit me), because I had mentally and practically prepared my departure for a year. I must admit though that it was a great feeling to no longer be held responsible for anything that goes wrong on AIDS anywhere in the world. The moment I walked through the door it was all over, and my mind was set on the future. Just before the end of the year I would fly from Geneva to Harlem, New York, to start a new chapter of my life.

At a farewell dinner in December in Geneva, I asked Kofi Annan for advice on what to do in January. His answer was prompt and brief: “Sleep! Sleep as much as you can. When the responsibility falls off your shoulders, only then you will feel how tired you are.” As so often, he was right. Every cell in my body had accumulated a decade of lack of sleep and constant jet lag—not to mention the never-ending stresses fueled by what were mostly pseudo crises. I often woke up in the morning and wondered which government would complain, which angry e-mail some activist would fire at me, which donor would announce the
n
th evaluation of UNAIDS, which UN agency would complain that UNAIDS behaved like an independent agency, which confusing or nasty newspaper article I would have to face that day. Just as in political positions, these are demanding jobs. Others may handle this better than I did, but I rarely could relax, even on vacation, when the US Government Accounting Office or a reporter would decide it was the best moment to launch another investigation. Work dominated life far too much, and my family paid a high price, which I deeply regret. Without their tolerance and support I probably would not have made it.

These are also lonely jobs, and there were very few people I could confide in and who understood what was at stake in terms of AIDS, how complex the environment was in which I had to operate, and how bizarre the behavior was of people I had to interact with. It was not easy to explain to friends and family how exactly I spent my days, as I was so often a victim of the 80/20 law, and it sounded like all I did was attend meetings, give three speeches a day, and sleep in planes. What I enjoyed the most was trying to convince people to act on AIDS and to strategize on how to move the AIDS agenda, globally and in each country. This required in the first place thorough preparation of each important encounter, a solid knowledge of the culture and political environment, and the background of the individuals I would meet, much more than the AIDS situation. Bearing in mind what my mentor Stanley Falkow told me about understanding how bacteria cause disease when I was working in his laboratory in Seattle, I tried to put myself in the position of the person I was going to meet. Trying to understand people’s needs was also a guiding principle when developing policies—something insufficiently done in health policy.

Working in the United Nations system (it was an extended family with many very diverse members) was often not easy. Together with humanitarian aid, and very recently women’s issues, UNAIDS was the most advanced attempt to “deliver as one” in the UN. Over the years I became increasingly skeptical as to whether the current UN coordination governance could ever be effective operationally, despite the goodwill of many, if not most, staff. The two main obstacles for delivering as one UN were the institutional interests of individual agencies—careers, political influence, budgets—and the incoherence and volatility of its member states, which not only had different, sometimes mutually exclusive, interests, but which also lacked internal coherence, as they promoted different agendas in different UN agencies depending upon which national department they represented. My conclusion on UN coordination was that it was a collective failure, and that the international community either goes for some bold mergers and acquisitions as the current plethora of institutions is too expensive, or that it accepts that pluralism is a strength, as long as only effective and well-managed institutions are supported and others closed down. The creation of new institutions outside the UN system to fix problems of the UN is not a solution, as much as I worked to make the Global Fund to Fight AIDS, Tuberculosis and Malaria a success.

Despite all imperfections, working as a senior UN official was a great privilege and allowed me to influence the global agenda in a way that very few positions offer—certainly when coming from a small country like Belgium. I also met an extraordinary group of smart and caring people at all levels of the system, and occasionally we even had fun during the otherwise dead-serious retreats of the chief executive board of the UN secretary-general. UNAIDS also provided a unique platform where the various AIDS actors came together globally, as well as in individual countries, and therefore could drive the agenda. So, our achievements were not so much inside the UN system but in the world at large, which is what ultimately counted. I always thought that I was paid to make a difference against AIDS, and if along the way I could contribute to a better UN, all the better, not the other way around—otherwise it would have been “operation successful, patient dead.”

The contrast between my formative years as a scientist-adventurer and leading a UN agency could not have been greater, but I thoroughly enjoyed the different lives I had. The transformation was gradual and took years, and rather than shedding the approach of a researcher, I worked hard to complement it with diplomatic, managerial, and political skills. My scientific background also gave me some credibility, but was most useful for analyzing the potential implications of new scientific information for policy. I had a double mantra: keeping AIDS as a global issue, not one of poor Africa, and keeping science, politics, and programs on the ground in sync. Science without politics has no impact, politics without science can be dangerous, and without programs people don’t benefit. However, when I was appointed as head of UNAIDS, I had to learn everything the job required, except AIDS. My years as an activist in medical school were probably at least as useful as my actual medical training. When writing these memoirs, it struck me how many of the same people played a role at different moments in my life. Without their advice and support I would not have been able to function properly.

How unique was the historic context that shaped the AIDS response and how applicable is the AIDS experience to other health or societal problems? Around the millennium the economy was flourishing, official development assistance was rising, a generation “WE” of young people was connected globally through social media, and a relative optimism prevailed, despite September 11, the wars in Iraq, Afghanistan, Côte d’Ivoire, Somalia, Chechnya, and more.

In addition, AIDS was exceptional in that it was global, affected young adults who normally don’t die, devastated entire countries, and often was associated with behaviors that are not approved of in society. This was not the flu or cholera that you can catch on a bus or from drinking contaminated water. Hallmarks of the response were the transformational role of people living with HIV and other activists, and a response that went far beyond the classic medical community. The combination of the unique features of AIDS and the global engagement of a wide spectrum of actors made AIDS the first
postmodern
epidemic, as Lars O. Kallings, the Swedish founding president of the International AIDS Society, once said. So it may be that the AIDS experience was historically unique, and there certainly was hardly a comparison between a short deadly epidemic such as Ebola hemorrhagic fever and the prolonged and equally deadly AIDS pandemic—even if the former makes better movies.

However, while AIDS was exceptional, it had broader impacts on how we perceive sexuality, on the doctor-patient relationship, on health as a global political issue, on the role of communities in health policies and programs, on the pricing of medicines, and on international development assistance. It was a catalyst for the emergence of “global health” as a major multidisciplinary field of study and practice, and generated major resources beyond AIDS to confront two old infectious diseases that were killing millions of people—malaria and tuberculosis—a major collateral benefit of the AIDS movement.

“Noncommunicable diseases”—cardiovascular disease, diabetes, cancer, mental health—are the pandemic of the twenty-first century, driven to a large extent by smoking, unhealthy food, lack of exercise, and environmental factors. This is an area that probably would benefit from the AIDS experience. For the first time in history a health threat to our survival as a species is not an infectious agent, but is due to the way we organize our lives and societies. Bringing noncommunicable diseases under control requires a coalition and resources even more formidable than what created the current achievements against AIDS.

We made good progress, but the end of AIDS is not in sight, and to this day, I remain haunted by the question of what I could have done earlier and faster. As for the future, I am greatly concerned about the sustainability of the response for the AIDS epidemic and for people living with HIV. HIV may be with us for generations and maintaining a high level of political engagement and commensurate funding will require a rethinking of political strategies, while making the new products of science available for HIV prevention among those who need it most, but are often those who are the least able to pay.

In my short life, numerous new pathogens have been identified in humans and animals, and new epidemics will undoubtedly continue to emerge, probably through the food chain as well as from animals. Can we anticipate these future outbreaks of new and unknown pathogens? To a certain extent we can, as for influenza, but surprises do happen, as with the emergence of H1N1 in Mexico, rather than in East Asia as was expected. Investing in a laboratory infrastructure, surveillance, and the training of relevant scientists across the world is a minimal requirement for early alert and action, but will not be sufficient, as difficult societal decisions will need to be made in times of great uncertainty around the potential spread of a newly identified virus. We must invest in improving such political decision making in uncertain times. Or did Louis Pasteur have it right when he said, “Messieurs, c’est les microbes qui auront le dernier mot” (Gentlemen, it is the microbes who will have the last word), even in our era of unparalleled science and technology?

Above all, the history of AIDS is one of refusing the inevitability of death because of lack of treatment, defeat, prejudice, and institutional obstacles, and moving mountains beyond familiar territory. It was—and is—the collective result of big and small heroes everywhere, a few villains, but also many who did not take up their responsibility. It brought out the best and the worst in human behavior. It helped me discover myself, and made me aware of my vitality as well as my vulnerability.

The global response to AIDS was a rare exception to the iron rule that international aid is fundamentally an extension of foreign policy and foreign trade, as illustrated by the long-term commitment to lifelong treatment in poor countries. The response was driven by a broad movement of people across the world and a sense of great moral outrage. As Philippe Kourilsky, the former director of the Institut Pasteur in Paris, wrote. It is perhaps the strongest example of global altruism out of a rational necessity in our ever-more interconnected world.

ACKNOWLEDGMENTS

Ruth Marshall has worked closely and patiently with me throughout the writing, including long hours of interviewing. In addition her research corrected the inaccuracies of my notes and the failings of my memory. Thanks to Charlotte Sheedy, Angela von der Lippe, and Laura Romain for believing in me and guiding me through the meanders of publishing.

I could not have written this book without the unfailing love, support, and encouragement of Heidi.  

My thoughts and gratitude go to Greet for her love, care, and understanding during many years, and to Bram and Sara for being such wonderful children in often difficult times. Exciting developments in my life meant sometimes great turbulence in their lives.

Getting older also meant that I realized how much I owe my parents for a renaissance education, for offering the space to explore the world, and for supporting me even when I walked paths the sense of which they did not understand or approve. My siblings—Wim, Pol, and Lieve—were always there when I was in trouble and, of course, to celebrate life.

I have been influenced by wonderful and inspiring people who collectively made history, and who are the actors of this memoir. My profound thanks go in the first place to colleagues and friends at the Institute of Tropical Medicine in Antwerp; the International Commission for Hemorrhagic Fever in Zaire; Projet Sida in Kinshasa; the University of Nairobi; the University of Washington; the University of Manitoba; the International AIDS Society; the Society on AIDS in Africa; the Global Programme on AIDS of WHO; UNAIDS, the Joint UN Programme on HIV/AIDS; the Bill & Melinda Gates Foundation; the King Baudouin Foundation; and the London School of Hygiene & Tropical Medicine.

King Holmes, Stanley Falkow, Paul Janssen, Michel Carael, Jerry Friedland, Marie Laga, Mark Dybul, and Michel Sidibé were my mentors at various stages in my life, and without Marie-Odile Emond I would not have survived.

At the risk of unfairly not mentioning many, I would like to thank friends and colleagues for their support (+ indicates that the person is deceased): Zackie Achmat, Michel Alary, Ashok Alexander, George Alleyne, Larry Altman, Roy Anderson, Kofi Annan, Louise Arbour, Dirk Avonts, Yvette Baeten, Bai Bagasao, Madhu Balla Nath, Ron Ballard, Stephen Becker, Frieda Behets, Paul Benkimoun, Seth Berkley, Stefano Bertozzi, Agnes Binagwaho, Bono, Tina Bonto, Ngali Bosenge (+), Caroline Bournique, Joel Breman, Mario Bronfmann, Richard Bruczinsky, Gro Harlem Brundtland, Françoise Brun-Vézinet, Jean-Baptiste Brunet, Bob Brunham, Piers Campbell, Lisa Carty, Andrew Cassel, Joe Cerrell, Suma Chakrabarti, James Chau, Julia Cleves (+), Hillary Rodham Clinton, Nathan Clumeck, Myron Cohen, Bob Colebunders, Awa Coll-Seck, Larry Corey, David Corkery, Sally Cowal, Alex Coutinho, Kathleen Cravero, Jim Curran, Achmat Dangor, Kevin De Cock, Paul DeLaey, Chris Elias, Brian Elliott, Hiro Endo, Gunilla Ernberg, Jose Esparza, Marika Fahlen, Anthony Fauci, Eric Favereau, Oscar Fernandes, Mary Fielder, Julian Fleet, Mark Foster, Skip Francis, Lieve Fransen, Louise Frechette, Geoff Garnett, Laurie Garrett, Bill Gates, Helene Gayle, Jacob Gayle, Tedros Adhanom Ghebreyesus, Geno Gysebrechts, Eric Goosby, Robin Gorna, Anand Grover, Meskerem Grunitzky-Bekele, Geeta Rao Gupta, Yusuf Hamied, Robert Hecht, Rajat Gupta, Robert Hemmer, Sylvie Herda, David Heymann, Mark Heywood, Lennarth Hjelmaker, Richard Holbrooke (+), Susan Holck, Karen Horton, Richard Horton, Chieko Ikeda, Michael Iskowitz, Aikichi Iwamoto, Carol Jacobs, P. J. Janssens (+), Francoise Jenskens, Karl M. Johnson, Noerine Kaleeba, Lars Olof Kallings, Joseph Bila Kapita, Nils-Arne Kastberg, Elly Katabira, Michel Kazatchkine, Jim Kim, Michael Kirby, David Klatzmann, Philippe Kourilsky, Richard Krause, Mathilde Krim, Ulf Kristoffersson, Cristian Kroll, Jean-Louis Lamboray, Peter Lamptey, Debbie Landey, Joep Lange, Geert Laleman, Michel Lechat, Stephen Lewis, David Mabey, Kambala Magazani, Marina Mahathir, Adel Mahmoud, Mark Malloch Brown, Purnima Mane, Elisabeth Manipoud, Jonathan Mann (+), Tim Martineau, Arnaud Marty-Lavauzel (+), Marta Mauras, HRH Mathilde van Belgie, Souleyman M’boup, Frances McCaul, HRH Mette-Marit of Norway, Joe McCormick, Andre Meheus, Michael Merson, Ren Minghui, Sheila Mitchell, Hans Moerkerk, Sigrun Mogedal, Rob Moody, Stephen Morrison, Pol Moyaert (+), Pierre Mpele, Peter Mugyinye, Luwy Museyi, Warren Naamara, David Nabarro, Jeckoniah O. Ndinya-Achola, Ibrahim Ndoye, Peter Ndumbe, Elisabeth Ngugi, Anja Nietzsche, Herbert Nsanze, Nzila Nzilambi, Thoraya Obaid, Olusegun Obasanjo, Sam Okware, Mead Over, Stefaan Pattyn (+), Martine Peeters, Jean Pegozzi, Greta Peits, Jos Perriens, Joy Phumaphi, Ben Plumley, Frank Plummer, Carole Presern, Y. S. Quarashi, Tom Quinn, Mamphela Ramphele, Prasada Rao, Sujata Rao, Olivier Raynaud, Helen Rees, Mary Robinson, Carlos Rommel, Alan Ronald, Christine Rouzioux, Jean-François Ruppol, Robin Ryder, Nafis Sadik, Roger Salla-N’tounga, Jorge Sampaio, Eric Sawyer, Jean-Louis Schiltz, Bernhard Schwartlander, Jim Sherry, Frika Iskander Shia, Werasit Sittitrai, Martina Smedberg, Papa Salif Sow, Paul Stoffels, Patty Stonesifer, Jonas Store, Jeff Sturchio, Tod Summers, Elhadj As Sy, Sandy Thurman, Yuki Takemoto, Daniel Tarantola, Masayoshi Tarui, Luc Tayard de Borms, Henri Taelman (+), Marleen Temmerman, Lucy Thompkins, Randy Tobias, Luis Ubinas, Guido Van der Groen, Eddy Van Dyck, Simon Van Nieuwenhove, Jens Van Roey, Stefano Vella, Jan Vielfont, Mechai Viravaidya, Paul Volberding, Jean-Paul Warmoes, Judith Wasserheit, Jonathan Weber, Alice Welbourne, Jack Whitescarver, Alan Whiteside, Ross Widy-Wirsky (+), Marijke Wijnroks, David Wilson, Per Wold-Olson, Jim Wolfonsohn, Tachi Yamada, Elias Zerhouni, Debrework Zewdie, and Winston Zulu (+).

This book was initiated thanks to a grant from the Ford Foundation, where I was a scholar in residence in New York in 2009.