July 9-14, 2000
Michael Marco is Director of Treatment Action Group's (TAG) Infections and Oncology Project, the author of TAG's The OI Report, The KS Project Report, The Lymphoma Project Report, and editor of TAG's The Wasting Report. He is a member of the NIH Office Of AIDS Research's Therapeutics Research Working Group, the National Cancer Institute's AIDS Malignancies Working Group and AIDS Malignancies Consortium, the USPHS/IDSA Prevention of Opportunistic Infections Working Group and a consultant to the FDA's Oncologic Drug Advisory Committee. email@example.com
Jeffrey Schouten, M.D., Attorney at Law, Clinical Assistant Professor of Surgery, University of Washington (UW) is an HIV primary care provider at UW's Harborview Medical Center and Vice-Chair of Washington's Governor's Advisory Council on HIV/AIDS. He is also a member of the Adult AIDS Clinical Trials Group's (AACTG) Community Constituency Group, Executive Committee and Scientific Agenda Steering Committee. Additionally, he is a member of the NCI's AIDS Malignancy Consortium, the Conference on Retroviruses and Opportunistic Infections Planning Committee, and Publications Editor for the Seattle Treatment Education Project (STEP).
The Treatment Action Group (TAG) fights to find a cure for AIDS and to ensure that all people living with HIV receive the necessary treatment, care, and information they need to save their lives. TAG focuses on the AIDS research effort, both public and private, the drug development process, and our nation's health care delivery systems. We meet with researchers, industry, and government officials, and resort when necessary to acts of civil disobedience, or to acts of Congress. We strive to develop the scientific and political expertise needed to transform policy. TAG is committed to working for and with all communities affected by HIV.
First thanks go to the board, staff, consultants, volunteers, and donors of TAG. Special thanks go out to Robert Huff for line-editing of the report, to Andrea Dailey for her forceful and exacting copy-edits, and to board member Lynda Dee of AIDS Action Baltimore, whose generous gift enabled us to print this report. Tremendous thanks goes out to my chief clinical editor, Marion Peters, for her many hours of editing, mentoring, laughter and writing the Foreword. Likewise, thanks to Thierry Poynard for his keen insight and generosity in writing The Clinician's View. Thanks to Jay Hoofnagle, Leonard Seeff, Teresa Wright and Douglas Dieterich for helpful instruction and going out of their way to assist me in my research. I must thank the many others who allowed me to interview them or made contributions to this project, including: Yves Benhamou, Clifford Brass, Megan Briggs, Massimo Colombo, Lawrence "Bopper" Deyton, Lorna Dove, Juan Esteban, Judith Fradkin, Jaime Guardia, Roy "Trip" Gulick, Bart Henderson, Joseph Hoffmann, Leslye Johnson, Michael Joyner, Christine Katlama, Brian Klein, David Kleiner, Thomas Kresina, Jay Lalezari, James Learned, Alexandra Levine, Karen Lindsay, Anna Lok, Jules Levin, Patrick Marcellin, Henry Masur, Cindy Mays, Donny Moss, Alison Murray, Chris Papas, Billy Pick, Robert Purcell, Stephen Rossi, Mark Sulkowski, Norah Terrault, David Thomas, Richard Whitley, and Kevin Young. Finally, thanks go out to David Berry, Todd Goodale, Kurt Fulton, Mark Harrington, Rick Leeds, Donna Masini, and Jeffrey Rindler for their support, guidance and fellowship.
If you would like more information about TAG, contact us at:
Treatment Action Group
350 Seventh Ave., Ste. #1603
New York, New York 10036
( T) 212.972.9022 / (F) 212.971.9019
First distribution: XIII International AIDS Conference, Durban, South Africa, 9-14 July 2000.
|This report is dedicated to the memory of|
(1953 - 1992)
(1963 - 1999)
"The disease generally progresses at a snail's pace, requiring the passage of 3 to 4 decades, in most instances, to reach recognizable serious endpoints. It therefore represents a daunting task for the clinical investigator, few of whom are willing to devote their research careers to this exhaustive form of investigation."
-- LB Seeff, Hepatology 1997; 26:21S-28S.
"Because of the ageing phenomena, all [natural history] studies which do not take into account both the age at infection and the duration of infection are meaningless."
-- T Poynard, e-mail correspondence, 23 June 2000.
"The patient who has a liver disease wants (or needs) to know about the natural history of the disorder so as to plan for the future. The patient should be informed regarding the likely consequences, important milestones, major complications, and available therapies, all given with a large measure of compassion and sensitivity."
-- WC Maddrey, AASLD, Postgraduate Course, 1999.
"Physicians and patients must carefully weigh the risks (which are clinically significant in the case of treatment with interferon alfa-2b and ribavirin), the benefits (moderate in this instance), and the cost (substantial in this instance) of any treatment option for a disease that has emerged as an important public health problem."
-- TJ Liang, N Engl J Med 1999; 340:1207.