Below is the letter that was presented to the writers of the NIH HCV Consensus Statement, which was drafted in Bethesda, MD at the 2002 National Institutes of Health Consensus Development Conference on Management of Hepatitis C. Thanks to all of you who signed on to endorse the sentiments of the letter.
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Dear 2002 NIH HCV Guidelines Writing Committee: We, the undersigned community advocates, researchers, public health specialists and clinicians, are writing to recommend a revision of the current NIH HCV Guidelines. The 1997 NIH HCV Guidelines generated by the Management of Hepatitis C National Institutes Of Health Consensus Development Conference stated that "Treatment of patients who are drinking significant amounts of alcohol or who are actively using illicit drugs should be delayed until these habits are discontinued for at least 6 months." We feel that all-encompassing restrictions of HCV antiviral treatment in this patient population are unsupported by scientific data and are unethical. We recommend that the guidelines be revised to state: "Treatment of patients who are drinking significant amounts of alcohol or who are actively using illicit drugs should be left to the discretion of the provider and patient and decided on a case-by-case basis." Injection-related HCV has become the dominant route for HCV infection in the United States and drug users will become the primary population seeking medical care for this condition in the near future. Drug users are a stigmatized population whose lives are frequently adversely affected by society’s moral views about their drug use. Nevertheless, morality cannot dictate healthcare as there are many individuals with a history of drug use who are capable of assessing the pros and cons of treatment and with whom a comprehensive treatment plan can be devised. Epidemologic, natural history and behavioral research data in past and present HCV-infected drug users are scant. We recommend that the NIH, with its multi-million dollar hepatitis research budget spread over numerous institutes, including NIDDK, NIAID, NCI, NIDA and NIAAA, dedicate funds to support innovative and quality research in this patient population. Moreover, the NIH should support research on comprehensive, multidisciplinary treatment approaches that incorporate hepatologists, infectious disease specialists, mental health practitioners and substance use counselors. The Veterans Administration is to be applauded for taking the lead in funding pilot sites engaged in multidisciplinary HCV models of care. The NIH must follow suit. As we search for truly viable medical treatments, individuals with a history of drug use cannot be categorically excluded from clinical trials or any part of the research agenda. On-going research must reflect the urgent needs of those drug-using individuals who are multiply diagnosed with HCV, HIV, and mental health issues. True partnerships between health officials, clinicians, researchers, primary care physicians, drug users and their advocates are urgently needed. Sincerely, | ||||||||
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| Sara Amber Hepatitis Education Project Seattle, WA Janet Adams, Ph.D. Family Health Council, Inc. Lois Ahrens, Director The Real Cost of Prisons Project An Activity of the Sentencing Project Washington, DC AIDS Action Washington, DC E.Russell Alexander MD Professor Emeritus of Epidemiology University of Washington Vice President Hepatitis Education Project Seattle WA Bruce Anderson New York, NY Stephen Arrendell New York, NY Sameena Azhar Young Men's Study, Center for AIDS Prevention Studies, UCSF, San Francisco, CA Dan Babuscio Prevention Point Pittsburgh Pittsburgh, PA Markus Backmund, MD Hospital Munich Schwabing Addiction Medicine München, Germany David Bangsberg, MD, MPH Assistant Professor in Residence Director of the Epidemiology and Prevention Interventions Center San Francisco General Hospital, UCSF San Francisco, CA Paola Barahona Executive Director PreventionWorks Washington, DC Steven L. Batki, M.D. Professor and Director of Research Department of Psychiatry SUNY Upstate Medical University Syracuse, NY Phyllis Beck National Hepatitis C Prison Coalition & Hepatitis C Awareness Project Eugene, OR Christopher Brown Assistant Commissioner Chicago Department of Public Health Chicago, Illinois Alice Bell, LSW Coordinator Prevention Point Pittsburgh Pittsburgh, PA Mona Bennett Program Director Atlanta Harm Reduction Center Dan Bigg, CRADC Chicago Recovery Alliance Chicago, IL James Bolas Empire State Coalition of Youth & Family Services New York, NY Joseph Bostic NYC AIDS Housing Network Brooklyn, NY Ronald Bosch Chair Franklin County Hepatitis C Project Great Falls, MA Mary Brett, MSW Social Work Case Manager Peter Claver Community San Francisco, CA Sabira Bushra, Director Partnership for Minority HIV/AIDS Prevention Pittsburgh, PA Jude Byrne Australian IV League Corrine Carey Urban Justice Center, New York, NY Mark Casanova Homeless Health Care Los Angeles Los Angeles, CA Lei Chou The Access Project AIDS Treatment Data Network New York, NY Luciano Colonna Harm Reduction Project Salt Lake City, UT Denise Connally PHN Vermont Dept. of Health Barre, VT Amy Cortney Advocates for Recovery through Medicine New Jersey Chapter Director Addiction Treatment Watchdog-Opinions Editor Critical Path AIDS Project Prof Nick Crofts Deputy Director The Macfarlane Burnet Institute for Medical Research and Public Health Victoria, Australia James W. Curran, MD, MPH The Rollins School of Public Health Emory University Atlanta, GA Sue Currie, MA Hepatitis C in the California Prisons Project Department of Medicine, UCSF San Francisco, CA Ric Curtis, Chair Department of Anthropology John Jay College of Criminal Justice New York, NY Julie Davids Philadelphia, PA Annet Davis-Vogel, RN, MSW Philadelphia, PA Dawn Day, Ph.D. Director, Dogwood Center Princeton, NJ Don Des Jarlais, Ph.D. Director of Research Baron Edmond de Rothschild Chemical Dependency Institute Beth Israel Medical Center New York, NY Charlotte Dick HIV Prevention Project San Francisco AIDS Foundation San Francisco, CA Andrew Epstein Students for Sensible Drug Policy New York, NY Martha A. Epstein Project Director Bronx Treatment Court Bronx, NY David Ewell Executive Director San Antonio AIDS Foundation San Antonio, TX Annie Fahy BSN, CACII Recovery Café Athens, GA Judith Farrer Justice Resource Institute's Assisted Living Programme Boston, MA Robert J. Feikema Executive Director Pittsburgh AIDS Task Force Pittsburgh, PA Sara Jane Firth HIV/STD Counselor St. James Infirmary Occupational Health and Safety Clinic San Francisco, CA Tracy Fischman, Director of Policy and Legislative Affairs Chicago Department of Public Health Division of STD/HIV/AIDS Public Policy and Programs Chicago, IL Peter Fisher, BS (Public Health) Co-chair: Franklin County (MA) Hepatitis C Action Project Great Falls, MA Heather Fitch Redwood City, CA Tiffany Fitzpatrick Prevention Point Pittsburgh Pittsburgh, PA Patsy Fleming President, Prevention Works: Needle Exchange in the Nation's Capitol Washington, DC Ken Fornataro Executive Director AIDS Treatment Data Network New York, NY Susan Forrest HIV Resource Specialist BHS-CASC Los Angeles, CA Leslie Franz Hepatitis Education Project Seattle, WA Gerald Friedland MD AIDS Program Yale School of Medicine Yale New Haven Hospital New Haven, CT Sam Friedman National Development and Research Institutes New York, NY John Fung, MD, PhD Thomas Starzl Professor of Surgery Chief, Division of Transplant Surgery University of Pittsburgh, PA |
Elana Galante Harm Reduction Counselor/Agency Trainer Central City Hospitality House San Francisco, CA Deborah Jane Gausmann, RN Presbyterian AIDS Network Pittsburgh, PA Anthony Gichemi Outreach Coordinator HIV/AIDS Services Inc. Grand Rapids, MI James J. Goedert, M.D. Viral Epidemiology Branch National Cancer Institute, NIH Lorna Gottesman Harlem Director's Group New York, NY Jenna Grant Hepatitis Testing, Education and Vaccination Project Berkeley Free Clinic Berkeley, CA Howard Grossman, M.D. New York, NY Donald Grove Moving Equipment New York, NY Mauro Guarinieri EATG vice-chair Milan, Italy Frank Guzman, Director Harm Reduction Cultural Resources Minneapolis, MN Laura C. Guzman Director, Mission Neighborhood Resource Center San Francisco, CA Christopher Hall, MD University of California San Francisco San Francisco, CA Judy Hahn, Ph.D. UCSF San Francisco, CA Jon Paul Hammond Reasearch Associate Urban Health Study, UCSF San Francisco, CA Kim Hardin Prevention Point Pittsburgh Pittsburgh, PA Robert Heimer Dept. Epidemiology and Public Health Yale School of Medicine New Haven, CT Daliah Heller CitiWide Harm Reduction Bronx, NY Martin S. Hirsch, MD Harvard Medical School Boston, MA Francois Houyez European Aids Treatment Group Paris, France Emalie Huriaux Street Outreach Worker MPH Student Women's Community Clinic San Jose State University San Jose, CA Ron Jackson, MSW Evergreen Treatment Services Seattle, WA Hermione Jefferis Co-ordinator, Hepatitis C Project Street Outreach Services, AIDS Vancouver Island Victoria, BC, Canada Nancy E. Jones, President, Nancy Jones Enterprises New York, NY Howard Josepher, CSW Executive Director Exponents New York, NY Marie Keem Senior Research Associate National Development and Research Institutes, Inc New York, NY Mark Kinzly Yale School of Public Health New Haven, CT Michael Kluger, MPH Project Director, The Hepatitis Project New York University School of Medicine New York, NY Ana Kosok, Program Director Moderation Management Network Inc. New York, NY Drew D. Kramer Executive Director Lower East Side Harm Reduction Center New York, NY Joey Kue community activist Lynne LaFontaine Austin Harm Reduction Coalition Austin, Texas Carl A. Latkin, Ph.D. Associate Professor Faculty of Social and Behavioral Sciences Department of Health Policy and Management Johns Hopkins School of Public Health Baltimore, MD Carin V. Layne-Lomon HIV/AIDS/HCV Advocate-Educator Boston, MA James Learned Hepatitis C Action & Advocacy Coalition (HAAC) New York, NY Danni Lentine, M.P.H. Acting Executive Director Atlanta Harm Reduction Center Jules Levin, Executive Director National AIDS Treatment Advocacy Project New York, NY Logan Lewis Phoenix Housex New York, NY Sage Loats Oakland, CA Mollie Lowery Lamp Community Los Angeles, CA Paula J. Lum, MD MPH Assistant Adjunct Professor Positive Health Program, Department of Medicine San Francisco General Hospital University of California San Francisco, CA Kathie Lustig Executive Director "Back to Life"-Santa Barbara Hepatitis C Support Project Santa Barbara, CA Bob Madison American Liver Foundation New York, NY Rosylen M. Mangohig, Esq. Berkeley, CA G. Alan Marlatt, Ph.D. Professor and Director Addictive Behaviors Research Center University of Washington Dept. of Psychology Seattle, WA Terri Martinez, Director Addiction Treatment Watchdog William D. McColl Director of National Affairs, Drug Policy Alliance Washington, DC Kate McCoy, Ph.D. Project Coordinator Montefiore Medical Center Department of Family Medicine and Community Health Bronx, NY Rachel McLean The DOPE (Drug Overdose Prevention & Education) Project San Francisco, CA Andrea Miller Research Associate Hampden County Correctional Center Dept. of Epidemiology and Biostatistics University of Massachusetts - Amherst Maureen Miller, PhD Columbia University New York, NY Ellen Miller-Mack Brightwood Health Center Springfield, MA Randy Milne (Co-Chair) Consumer Advisory Board of the Southwestern PA AIDS Planning Coalition Pittsburgh, PA Lisa Moore Assistant Professor, Department of Health Education San Francisco State University San Francisco, CA Brian Murphy Highlands Community Development Corporation West Milford, New Jersey Bill Nelles General Secretary Dr. Chris Ford Chair The Methadone Alliance London, UK Anna Nelson, Executive Director Interior AIDS Association Fairbanks, AK Michael Ninburg Executive Director Hepatitis Education Project Seattle, WA Bob Norman Program Manager Access Works Minneapolis, MN Kris Nyrop Street Outreach Services Seattle, WA Kevin P. Nuttall North Catolina AIDS Policy Center Alyshia Ogdie Oakland, CA Heidi Olson, Prevention Specialist AIDS Network/Networks Madison, WI Katie O'Neill Sr. VP for Law and HIV/AIDS Projects Director Legal Action Center New York, NY |
Ane Kunga Palmo DOC Religious Advisory Committee Hepatitis C Advocate Seattle, WA Denise Paone Ed D New York, NY Larry David Pasco Founder & Executive Director Harm Reduction Institute ( The Aids Brigade ) Max Pepper, MD, MPH Adjunct Professor of Public Health University of Massachusetts School of Public Health at Amherst, MA Philadelphia FIGHT Tom Price St. Louis, MO Divine Pryor ADAPT Brooklyn, NY Dave Purchase North American Syringe Exchange Network Tacoma, WA James Reinke LifePoint Program AIDS Resource Center of Wisconsin Madison, WI Josiah D. Rich, M.D., M.P.H. Associate Professor of Medicine and Community Health Brown University School of Medicine Attending Physician, The Miriam Hospital Providence, RI Jill Rips Assistant Director San Antonio AIDS Foundation San Antonio, TX Helen Redmond MSW LCSW University of Illinois at Chicago Family Center for Immune Defiency and Immunology Chicago, IL Christy Robb Shelter & Food for the Homeless New York, NY Andre Robertson Director of Prevention Black Coalition on AIDS San Francisco, CA J. Giselle Rogers Public Health Nurse Interior Health Authority Kootenay Boundary Community Health Services Castlegar, B. C. Canada Gary Rose Title II Community AIDS National Network Allan Rosenfield, MD Dean, Mailman School of Public Health Columbia University New York, NY (personal endorsement, name of School for identification purposes only) Leana Rosetti Volunteer Coordinator HIV Prevention Project, San Francisco AIDS Foundation San Francisco, CA Renee Ross New York AIDS Coalition New York, NY Debra Rothschild, Ph.D. Private Practice New York, NY Matt Rowe Haight Ashbury Youth Outreach Team San Francisco, CA Maureen Rule, MA, LPC Albuquerque, NM Romeo Sanchez Alliance for Inmates with AIDS New York, NY Lynne A. Sampson, MPH Doctoral Student Department of Epidemiology University of North Carolina, Chapel Hill Chapel Hill, NC Wayne Saville, M.D. Assistant Professor UCSD School of Medicine San Diego, CA Jeffrey Schouten, MD Seattle Treatment Education Project Seattle, WA Charles A. Sessoms Director of Prevention and Education AIDS Support Group of Cape Cod Provincetown, MA Kimberly Page Shafer, Ph.D., M.P.H. Assistant Professor Dept. of Medicine, Center for AIDS Prevention Studies University of California San Francisco San Francisco, CA Susan G. Sherman, PhD, MPH Johns Hopkins University Bloomberg School of Public Health Baltimore, MD Mike Shriver Advisor to the Mayor on AIDS & HIV Policy Co-director AIDS Policy Research Center AIDS Research Institute/UCSF San Francisco, CA Randy Silva, Case Manager II Episcopal Community Services- The Rose San Francisco, CA Sue Simon, New York, NY Paul Simons Executive Director Sensory Park Denver, CO Peter Simpson, Executive Director Harm Reduction Services Sacramento, CA Suzette Smetka, Executive Director Community Health Outreach Project Hawaii Honolulu, HI Bryan C. Cole Smith, M.Ed. University of Pennsylvania School of Dental Medicine Hospital of the University of Pennsylvania's Infectious Disease Clinic Adult AIDS Clinical Trials Group Community Constituency Group Jo L. Sotheran, Ph D Mailman School of Public Health, Columbia University New York, NY Freya Spielberg, MD, MPH Assistant Professor, University of Washington, Seattle, WA Sharon Stancliff, MD Medical Director Harlem East Life Plan New York, NY P. Clay Stephens School of Public Health - SUNY-Albany (Affiliation for identification purposes only) Jim Stodola, Director of Services AIDS Network/Networks Madison, WI Steffanie Strathdee Ph.D. Department of Epidemiology Johns Hopkins Bloomberg School of Public Health Baltimore, MD Dan Sundquist Harm Reduction Alliance, NH Tracy Swan AIDS Treatment Activists Coalition New York, NY Reena Szczepanski Hepatitis Prevention Program New Mexico Department of Health Albuquerque, NM Bob Thawley Urban Health Study UCSF San Francisco, CA Kevin Tillman Duke University AIDS Community Advisory Board Andi Thomas Executive Director Hep-C ALERT, Inc. North Miami, FL Rick C. Thornton Novato, CA Don Topping Drug Policy Foundation of Hawaii Honolulu, HI Kenneth A. Vail, M.P.H., M.A. Director, HIV Outreach, Prevention & Education Department AIDS Resources, Information & Services (ARIS) of Santa Clara County San Jose, CA Leatrice Wactor Harlem Director's Group New York, NY Chia Wang, MD, MS Medical Co-director, Hepatitis & Liver Clinic Harborview Medical Center Seattle, WA Judith N. Wasserheit, M.D., M.P.H. Director, HIV Vaccine Trials Network Member, Fred Hutchinson Cancer Research Center Professor of Medicine, University of Washington Seattle, WA Monique Whalen The Works Needle Exchange Boulder, Colorado John D. Whitfield III HR-SEP Coordinator Outside In Portland, OR Peter Whiticar, Branch Chief STD/HIV AIDS Prevention Hawaii Department of Health Honolulu, HI Yana Wirengard San Francisco AIDS Foundation/HIV Prevention Project San Francisco, CA Dr. Bob Wood Director, HIV/AIDS Program Public Health - Seattle & King County Assoc. Prof. of Medicine/Public Health University of Washington Seattle, WA Rebecca M. Young, Ph.D. NDRI, Inc. New York, NY Barry Zevin MD Medical Director Tom Waddell Health Center San Francisco Department of Public Health San Francisco, CA Susan Ziony Board President Atlanta Harm Reduction Center | ||||||