Guest guest Posted December 31, 2004 Report Share Posted December 31, 2004 Hepatitis C PART ONE OF TWO SILENT ALARMMillions of Americans have hepatitis C. Most don't know it. And the government, despite many pledges, hasn't warned the nation. KEITH MYERS/The Kansas City Star Wohlert had her swollen feet and legs massaged by her mother, Friedel Elliott. The living room of their Raytown home has been converted into a care center for Wohlert, who is dying of hepatitis C. DAVID EULITT/The Kansas City Star learned he had the virus after he had a transfusion 20 years ago but did not consider treatment until recently. , with daughter Marisha, 7, and son Adam, 2, worries about his family.Large-scale patient search founders while FDA delaysIn 1999, federal health officials pledged to pursue a nationwide hunt for at least 188,000 people who had received transfusions of blood infected with hepatitis C. But the search for patients stalled, and it turns out that the officials never ordered it.By KAREN DILLON / The Star Education campaigns fall short , a Kansas City truckdriver, got it during an operation. South Carolina technician Dale Muir got it while inspecting used catheters. , who works for a Kansas City radio station, got it from a transfusion while giving birth.By KAREN DILLONand MIKE MCGRAW©The Kansas City Star » Hepatitis C: What you need to know (.pdf) » Take our Hepatitis C interactive quiz » About the series, staff » Ask Your Question Blood-testing efforts in Texas met resistanceAfter the AIDS crisis, Norwood Hill's blood bank in Dallas had been sued and denounced for failing to protect the blood supply from the HIV virus. In 1990, Hill had a chance to cleanse donated blood of another virus, hepatitis C. To do that, he had to fly the blood 1,300 miles to Canada each day for testing.By KAREN DILLON/ The Kansas City Star » Many people have no idea about hepatitis C, poll shows » Risk from tattooing uncertain » Celebrities with hepatitis C PART TWO OF TWO Disease spread as test delayedHundreds of thousands of people got hepatitis C because of tainted transfusions in the 1980s.By KAREN DILLON / The Kansas City Star » Treatment has limited success » Surge of patients worsens liver crisis » Job-related infections hard to prove » Researchers struggle to scrape up funding » ALT testing: How many were infected? HEPATITIS C UPDATE Patent agreement draws federal reviewA California company's discovery of hepatitis C in 1987 opened the door to vital research on the potentially fatal virus.By MIKE McGRAW / ©2004 The Kansas City Star » More on Hepatitis C: Silent Alarm THE DISEASEHepatitis C is a liver disease caused by a blood-borne virus. The virus can stay in the body for decades before damage becomes apparent. Although many never suffer any ill effects, others have symptoms such as fatigue and nausea. Thousands die each year.Hepatitis C help» The Centers for Disease Control's automated help line is 1-(888) 443-7232.» The Kansas City Health Department can answer questions about the disease from 8 a.m. till 5 p.m. weekdays. Call (816) 513-6152.» Download the The Star's full-page hepatitis C primer in .pdf form.» The VA Medical Center in Kansas City has a monthly support group. Call (816) 861-4700, ext. 6579 or 7046.» A group at Kansas City Free Health Clinic, 3515 Broadway, meets Tuesday nights. Call (816) 753-5144. U.S. GOVERNMENT SITES Centers for Disease Control and PreventionExtensive medical information on all forms of viral hepatitisNational Institute of Allergy and Infectious DiseasesMedical information about hepatitis C from the institute (NIAID), part of the National Institutes of Health''What I need to know about Hepatitis C''Easy-to-read information about hepatitis C from the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK)Chronic Hepatitis C Current Disease ManagementExtensive medical and patient-oriented information about hepatitis C from the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK)MEDLINEplus and the National Library of MedicineAuthoritative medical information about hepatitis CNIH Consensus Development Conference on hepatitis CReport from the conference, June 10-12, 2002, in Bethesda, Md.Veterans Administration Hepatitis C Resource CentersThe VA ''leads the country in hepatitis C screening, testing, treatment, research and prevention. VA is the largest single provider of medical care to people with hepatitis C infection in the United States.'' SUPPORT AND ADVOCACY SITES American Liver Foundation (ALF)''A national, voluntary nonprofit organization dedicated to the prevention, treatment, and cure of hepatitis and other liver diseases through research, education and advocacy''Hepatitis Foundation InternationalA support organization based in Cedar Grove, N.J.The Hep C ConnectionA Colorado-based hepatitis C ''network and support system,'' with a good list of linksThe hepatitis C epidemic A clear, detailed description from a prominent authority, Dr. Norah Terrault of the University of California. Presented as part of a post-graduate course to the American Association for the Study of Liver Disease in October 2000.Hepatitis A-ZA British site with many articles and links. The site is part of the Hepatitis WebRing, from which you can jump to hundreds of other hepatitis-related sites.Janis and Friends Hepatitis C Support Web SiteA personal site with a hepatitis C glossary, a history of the disease and many other features.National Hepatitis C Coalition Inc.A support and educational site that includes desert auto-racing for hepatitis C and lots of information about alternative (herbal) therapies.Hepatitis C Support Project (HCSP)A San Francisco-based not-for-profit with a list of hepatitis C support groups nationwide, among other features.Hepatitis C AssociationNew Jersey-based Web site, with a focus on ''education, awareness, organ donation.Hepatitis C Outreach ProjectA national non-profit organization dedicated to prevention, education and treatment of hepatitis C, and organ donation. Offers links to liver transplant information.Frontline Hepatitis AwarnessThis not-for-profit group says its mission is to bring together hepatitis support groups, patitents and organizations for education and support. EDUCATIONAL SITES Hepatitis C: An Epidemic for AnyoneSponsored by an educational grant from the Koop Foundation, Inc. to Dartmouth College. With videos and a message from Dr. C. Everett Koop, former U.S. Surgeon General.American Association for the Study of Liver DiseasesA 2,300-member organization of hepatologists and other liver specialists. Mostly organizational info and members-only, but one public section contains articles on practice guidelines for various aspects of hepatitis.Hepatitis CentralAn educational site with medical journal articles, news and much else.Krever Commission ReportHealth Canada provides access here to download the 1,138-page Krever Commission Report, a critical look at the role of government and the blood industry in the AIDS and hepatitis C epidemics in Canada.World Health Organization WHO's Web site on hepatitis that includes a global overview of the disease.HIV and HepatitisThe site's objective is ''to create a quality online publication that provides ... information about treatment for HIV/AIDS, chronic hepatitis B and hepatitis C ... .''Hepatitis MagazineA bimonthly resource guide to assist hepatitis patients and their families in taking control of their health care by providing current, comprehensive information. HEPATITIS CDOCUMENTS » Congressional report: A committee in 1998 calls for a much more aggressive campaign to educate the public about the disease. » Surgeon General's letter: This 2000 letter was to be mailed to households nationwide to inform people about the hepatitis C epidemic. It never was mailed. » Lookback options: A 1997 HHS report that laid out the pros and cons of conducting a lookback for patients potentially infected with hepatitis C through transfusions. » A Red Cross warning: A Jan. 14, 1981, memo written to alert blood directors to prepare for ALT testing. » The Jan 9, 1981, meeting: A report on the recommendation to use the ALT test to screen donated blood for hepatitis C. » Commentary on the meeting: A letter about the meeting, sent from a participant to a Red Cross official who wasn't there. » The decision changes: A July 1981 newsletter of the American Association of Blood Banks reporting that testing was on hold. » The Canadian viewpoint: A report by two representatives of the Canadian Red Cross who monitored the progress of American blood bankers in deciding whether to use the ALT test. » The blood industry's position: A draft of a 1982 report explaining reasons for the delay in testing. » A 1970s study: A description of the foundational TTV study that in large part led to the debate over using the ALT test. 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