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Hepatitis C: The disease no one's talking about http://www.statesmanjournal.com ALAN GUSTAFSON The Statesman Journal The disease is a 'silent epidemic' that is getting little public attention, state official says Ann Shindo takes to task the federal government for failing to confront hepatitis C in Oregon and across the country. "Remember when Reagan didn't say AIDS? That's where we are with hep C," said Shindo, the coordinator of viral hepatitis prevention for the Oregon Department of Human Services. "It's (like) 1988, pal, and no one's talking about hep C. "We have four times as many people nationwide living with hep C as HIV (the virus that causes AIDS) and we have no federal funds and state funds to address this epidemic." The national Centers for Disease Control and Prevention estimates that nearly 2 percent of all Americans, more than 4 million people, are infected with hepatitis C. It kills about 10,000 people per year. Each year, there are anywhere from 20,000 to 30,000 new infections, according to the federal agency. Often called the "silent epidemic," hepatitis C can hibernate in the liver for decades, often taking 20 to 30 years before symptoms surface. Shindo said an estimated 65,000 Oregonians have hepatitis C, and most of them do not know they are carrying it. For some, it's a devastating, potentially lethal time bomb. "The reality is, someone may be clean and sober for 25 years, then find out they have hep C, and it dramatically changes their life," Shindo said. "That's a very common story. It can detrimentally impact peoples' lives to the point of losing their jobs, losing their homes, and becoming homeless." Hepatitis C is spread mainly by exposure to infected blood. The most common way it's transmitted is by the sharing of needles by drug users, which accounts for nearly 70 percent of new infections. There is no vaccine for hepatitis C. The virus wasn't identified until 1989, and testing wasn't available until 1992. For unknown reasons, the majority of people with hepatitis C won't develop severe symptoms or need treatment. But about one in five among the chronically infected will develop life-threatening complications, such as cancer, cirrhosis and liver failure. Hepatitis C is the leading cause of liver transplants in the U.S. Of the 18,000 Americans waiting for a transplant, an estimated 40 percent to 60 percent have hepatitis C. Further complicating matters is the "tricky business" of treatment, Shindo said. Antiviral medication for hepatitis C is expensive, often causes severe side effects, and fails to eradicate the virus in about half of all patients. Treatment generally is not recommended for those without liver damage. But regular monitoring is seen as crucial for everyone with hepatitis C. Educating a poorly informed public about the harsh realities of hepatitis C poses an uphill fight, Shindo and other activists say. "It's a highly stigmatized disease," Shindo said. "People believe, 'Oh, it's just drug injection drug users who get it.' " In Oregon City, a nonprofit advocacy organization called the Hepatitis C Caring Ambassadors Program is trying to pump up the volume about the "silent epidemic." As it stands now, Lorren Sandt, the program director, said "most people don't know what hepatitis C is because there's a lack of education and awareness. Also, there's a shortage of testing that is available within the public health departments." Shindo holds the news media partly to blame for widespread lack of know-ledge about hepatitis C. "I think there's a lot of mythology and just cluelessness around this epidemic nationwide," she said, "and part of the reason for that is there's been a lack of media coverage and a lack of funding for folks like me to get out there and address all the high-risk folks that need to be addressed." Shindo's job is funded by the CDC, which pays for hepatitis C coordinators in nearly all 50 states. However, states only get enough funding to cover the cost of the coordinator's salary, leaving most coordinators with little or no budget for programs and services, such as testing and education. "I'm the program," Shindo said. "We have no federal or state funding for hepatitis C screening or education. We can't even afford billboards to put up the information regarding who should be screened." agustafs@StatesmanJournal.com or (503) 399-6709
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