Table of Contents
Tracy Swan was born in West Hollywood, California. She moved to New York City in 2001. In Sept 2003, she joined TAG's full-time staff as Coinfection Project Director. She is delighted to have the opportunity to bring together her experience in direct service, advocacy, education, program development, policy and research for TAG. She started her HIV/AIDS work in 1990, and HCV work in 1998. Ms. Swan has developed policies and curricula for HIV counseling and testing programs targeted towards GLBT youth and active drug users, created an HCV education and services program, and worked in a variety of venues, including community health centers, detoxification facilities, homeless shelters, methadone clinics, residential drug treatment programs, a syringe exchange program, and transitional housing facilities. She is the author of TAG's 2003 Research and Policy Recommendations for Hepatitis C Virus (HCV)/HIV Coinfection. Ms. Swan is a former member of the Community Constituency Group of the Adult AIDS Clinical Trials Group, where she served as the Community's Representative to the Liver Disease Subcommittee and the Immunology Research Agenda Committee. She is a member of the AIDS Treatment Activists Coalition's Drug Development Committee. Contact her at: firstname.lastname@example.org.
Daniel Raymond works as the Hepatitis C Policy Analyst for the Harm Reduction Coalition in New York City. More of his writings on HCV research and drug development can be found online at the Hepatitis C Harm Reduction Project weblog www.hepcproject.org. Contact him at: email@example.com.
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.
If you would like more information about TAG, contact us at:
Treatment Action Group
611 Broadway, Suite 608
New York, NY 10012
Thanks to the board, staff and generous donors of TAG. This report would not have been possible without your support.
Special thanks go to a group of remarkable people who were extremely generous with their time and talents: Joel Beard for his meticulous website work; Lei Chou, for his impeccable graphic design; Jen Curry, for her exacting proofreading and editing; Andrea Benzacar Dailey for her precise, clear copy editing; Mark Harrington and Bob Huff for their valuable editorial contributions; Kenneth E. Sherman, medical editor, for his expert assistance and beautifully written Foreword, and Daniel Raymond, my collaborator, for his keen insight and immense support throughout this project.
Many people contributed to this project by sending me copies of their work, answering questions, and sharing their knowledge, experience and perspectives. Thanks to: Campbell Aitken, Miriam Alter, Pierre Bedossa, John Bell, George Bishopric, Carol Brosgart, Adeel Butt, Laurie Carlson, Ray Chung, Dan Church, Allan Clear, Robert Consalvo, Eddie Davis, Lawrence "Bopper" Deyton, Doug Dieterich, Gregory Dore, Brian Edlin, Peter Ferenci, Catherine A. Fleming, Alan Franciscus, Hassan J. Gibbs, James Goedert, Camilla S. Graham, Judy Greenspan, Donald Grove, Jeff Gustavson, Hideji Hanabusa, Robert Heimer, Eva Herrmann, Lisa Hirschhorn, Jay Hoofnagle, Tim Horn, Brian Klein, Richard Klein, Margaret Koziel, Thomas Kresina, James Learned, Jules Levin, Greg Lucas, Peter Lurie, Laura Mc Tighe, Shruti Mehta, Joanne Micaleff, Donny Moss, Marion Peters, Sharon Phillip, Billy Pick, Thierry Poynard, Margaret Ragni, Michael Rigsby, Michelle Roland, Dana Jane Saltzman, Jeffrey Samet, Alejandro Schijman, Leonard Seeff, Mitchell Shiffman, Norah Shire, Jeff Smith, Rod Sorge, Val Sowell, Sharon Stancliff, Peter Stock, Mark Sulkowski, Diana Sylvestre, Lillian Thiemann, Andi Thomas, David Thomas, Francesca Torriani, Annemarie Wasley, Rune Wejstal, Johnan Westin, Laura Whitehorn, Teresa Wright, and Nizar Zein.
Thanks to the staff of the New York Academy of Medicine Library's Document Delivery Department: Rochelle Castillo, Ruth Dizon, William Landers, Walter Linton, William Spivey, Anthony Taylor, and Elena Vassilkioti, with gratitude and appreciation for your help.
Thanks to the authors of The Hepatitis Report, version 1.0, Michael Marco and Jeffrey Schouten, who paved the way for this report with their work.
This report is dedicated to:
Jen Curry and Linda Viens
And in recognition of:
Carlton Hogan 1961-2003
Tony Tigno 1965-2004
Concepts of health and illness, well-being and disease are cultural constructs -- they vary with time and place, with ideology and belief. Over the course of history our views about health and illness have changed. We have moved, or so most of us would like to believe, away from a paradigm where the causes of illness being unknown, were ascribed to divine judgment or intervention, to a paradigm where we have started to understand the biological, physical and psychosocial origins of our personal and community maladies.
However, every now and again, along comes some new infection, some new threat to public and personal health, something where the origins are initially uncertain and obscure. In such circumstances it often appears that it does not take long for us to revert to a more primitive reaction to these new challenges and, in particular, for us to exhibit an irrational degree of prejudice and discrimination against those who suffer from the new infection. This is particularly manifest when the new infection is somehow linked with aspects of personal behavior which depart from the prevailing contemporary norm.
Introduction to "C-Change: Report of the enquiry into hepatitis C related discrimination"