by Piot, Peter
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.
INDEX
Abdool Karim, Quarraisha, 205, 229
Abdool Karim, Salim, 205
Abune Paulo, Patriarch of Ethiopian Orthodox Church, 270
Achmat, Zackie, 285
Albert the Second, King of the Belgians, 232
Albright, Madeleine, 232
Alexander, Ashok, 199, 350
Alexy II, Patriarch of Moscow, 346
Alleyne, George, 257, 287
Almedal, Kalle, 268
Altman, Larry, 247, 258
Anand, Panyarachun, 237
Anderson, Roy, 58, 165, 171
Annan, Kofi, 222, 245, 249, 271–72, 275, 281, 286, 288, 289–90, 291, 292, 308, 312, 316, 319, 320, 321, 323, 327, 329, 340, 341–42, 353, 362, 372
Arthur, Owen, 287–88
Assad, Fakhry, 150
August, Father, 31
Avonts, Dirk, 139
Bacon, Francis, 269
Ballard, Ron, 109
Ban Ki-moon, 340–41, 369–70
Barré-Sinoussi, Françoise, 160–61
Bauchau, Le Chevalier (Knight), 142
Beata, Sister, 31, 41
Behets, Frieda, 60, 143, 152, 195
Bellamy, Carol, 245, 296, 327, 366
Benn, Hilary, 333, 336
Berkley, Seth, 223
Bertozzi, Stefano, 227, 368
Binagwaho, Agnes, 260, 369
Bindert, Franz, 212
Blair, Tony, 332
Bolton, Joshua, 330
Bongo, Omar, 261
Bono, 362
Bournique, Caroline, 371
Boutmans, Eddy, 272
Boutros-Ghali, Boutros, 217
Breman, Joel, 22, 24, 26, 35, 36, 40, 47, 49, 56, 78–79, 80, 91–92, 98, 155
Brink, Brian, 317
Bruczynski, Richard, 211
Brundtland, Gro Harlem, 308, 309–10, 319, 325, 326, 332
Brunet, Jean-Baptiste, 171, 189, 223
Brunham, Bob, 104–5
Brun-Vézinet, Françoise, 137
Bumba, General, 27, 53, 82
Burke, Jean, 23
Burke, Robert, 5
Burton, Richard, 5
Bush, Barbara, 368
Bush, George H. W., 172–73
Bush, George W., 291, 314, 318, 319, 320, 328, 329–30, 331, 332, 364
Bush, Jenna, 368
Butler, Richard, 229
Byamugisha, Gideon, 267
Cameron, Edwin, 229
Carael, Michel, 187, 188–89
Cardoso, Fernando Henrique, 255
Carlos, Father, 31, 35, 43, 52, 63, 73, 75–76, 163, 165
Cassells, Andrew, 320
Castro, Fidel, 236, 255–58
Chakrabarti, Suma, 260, 338–39
Chan, Margaret, 347
Chequer, Pedro, 254
Chiluba, Frederick, 261
Chirac, Jacques, 263, 300, 305
Clements, Mary Lou, 249
Cleves, Julia, 248, 310, 320, 368, 371
Clinton, Bill, 218, 263, 272, 288–89, 290, 303, 324, 331
Close, Bill, 26–27, 70
Close, Glenn, 27
Clumeck, Nathan, 126, 127, 169, 185
Colebunders, Bob, 142, 143, 154–55
Coll-Seck, Awa, 162, 225, 282, 304
Conn, Del, 81
Coovadia, Hoosen M. “Jerry,” 285
Costa, Antonio Maria, 352
Courteille, Jacques, 4, 12, 25
Cowal, Sally, 225, 232, 248, 265, 267, 269–70
Cravero, Kathleen, 276–77, 287, 291, 293, 295
Cummins, Joseph, 298
Curran, James, 127–28, 142, 155, 176, 223
Da Costa, Dr., 112
Daigo, Master, 211
Damien, Father, 5, 118, 138, 363
Dangor, Achmat, 323, 337
Datta, Pratibha, 115, 179
De Cock, Kevin, 163, 172
Decossas, Joe, 223
de Gagné, Don, 211
Delaporte, Eric, 178
De Leys, Bob, 177
Delgadillo, René, 4, 7–8, 13
Deng Xiao Ping, 309
Desmyter, Jan, 127
Diouf, Abdou, 196, 237, 259
Dlamini, Gugu, 360
Dondo, Kengo wa, 94
Dorset, Johnny, 368
Douglas, Denzil, 287
Duesberg, Peter, 278, 281
Dumont, Serge, 353
Dybul, Mark, 331, 363
Edmunda, Sister, 31
Einstein, Albert, 141
Elders, Jocelyn, 218
Elliott, Brian, 304
Embree, Joanne, 179
Emond, Marie-Odile, 295, 371
Endo, Hiro, 211
Essex, Max, 172, 196
Falkow, Stanley, 97, 103, 139, 373
Fauci, Anthony, 142, 328
Feachem, Richard, 322, 323, 332
Fernandes, Oscar, 349
Fisher, Mary, 371
Fleet, Julian, 311, 313, 371
Foege, Bill, 101
Folb, Peter, 298–99
Foster, Mark, 309
Foster, Stan, 100
Fox, Emile, 353
Francis, Don, 242
Francis, Henri “Skip,” 142, 162–63, 196
Fransen, Lieve, 112–13, 173, 311, 319
Frechette, Louise, 272, 275, 291, 294, 319
Frenk, Julio, 326, 347
Freud, Sigmund, 188
Frist, Bill, 329
Gallo, Robert, 135, 160–61, 172
Gandhi, Sonia, 349
Gao Qiang, 356
Garnier, Jean-Pierre, 312
Garrett,
Laurie, 83
Gates, Bill, 362
Gayle, Helene, 212–13, 216, 247
Gellman, Barton, 264–65, 300
Genoveva, Sister, 37–38, 40–41, 50, 67–68, 165
Geraerts, Jef, 36–37
Germain, Father, 31
Gershey-Dammet, Guy-Michel, 188–89
Gerson, Michael, 330
Ghys, Peter, 172
Gillespie, Duff, 247, 263–64
Gilmartin, Ray, 308, 309–10
Giscard d’Estaing, Valéry, 70
Goosby, Eric, 330
Gore, Al, 275, 303
Gorna, Robin, 337
Grant, James, 210, 217, 371
Grunitzky-Bekele, Meskerem, 162
Gujral, Inder Kumar, 325
Gwaradzimba, Fadzai, 299
Hamied, Yusuf, 307, 311, 313
Hatch, Orrin, 328
Helms, Jesse, 328
Herda, Sylvie, 371
Heymann, David, 81
Holbrooke, Richard, 273–75
Holck, Susan, 223, 225
Holkeri, Harri, 291
Holmes, King, 97–98, 99, 101–4, 111, 128
Horton, Karen, 371
Houphouet-Boigny, Félix, 267
Ikeda, Chieko, 211
Innocent X, Pope, 269
Isaacson, Margaretha, 22–23, 25, 47, 56, 60–61, 81
Iskander, Frika Chia, 351
Iskowitz, Michael, 328–29, 330, 365
Iwamoto, Aikichi, 211