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Posted on 12/28/2003 12:46:27 AM PST by Askel5
| Posted on Sun, Nov. 09, 2003 HEPATITIS C: SILENT ALARM Michael Douglas, a Kansas City truckdriver, got it during an operation. South Carolina technician Dale Muir got it while inspecting used catheters. Teresa Cox, who works for a Kansas City radio station, got it from a transfusion while giving birth. These Americans, and at least 4 million more, have been infected with the hepatitis C virus. Ten thousand or more of them will die from it this year -- about 35 times the toll from last year's much-publicized outbreak of the West Nile virus. In fact, the annual number of hepatitis C deaths in the United States now approaches those from AIDS. And although the Centers for Disease Control and Prevention have launched aggressive battles against AIDS and West Nile, they give hepatitis C much less money and attention. Despite warnings from two U.S. surgeons general, the federal government has failed to follow through almost every time it has announced massive campaigns to educate citizens about hepatitis C, The Kansas City Star has found. Even today, a 3-year-old information kit still sits at the CDC waiting to be produced and distributed to 250,000 doctors and their patients. CDC officials say they're doing the best they can with little money. But the CDC collects only limited information about Americans with hepatitis C. It relies partly on states to report infections, a process that has been woefully unreliable. Kansas, for example, reported more cases of leprosy -- one -- than hepatitis C in 1999. Hepatitis C is the most common chronic blood-borne virus in this country. Yet the CDC keeps better figures about people crushed to death by hay bales. Without an alarm from the government, many people who don't know they're infected with hepatitis C won't get treated and will unknowingly spread it. "They (federal officials) basically failed to do what they needed to do to stay on top of the challenge of hepatitis," said Arthur Caplan, one of the nation's most prominent bioethicists and former chairman of a federal blood safety committee. "They've not really come to grips with the fact that this is a serious disease." The head of the CDC said in a statement that the government has tried to address HCV, as hepatitis C is called. "CDC has been working with numerous partners to better understand the extent of the infection in the United States as well as educating the public about how HCV is transmitted, what they can do to protect themselves, and the need for testing and counseling for those at risk," said Julie Gerberding, CDC director. But most Americans with hepatitis C still do not know they have it, CDC officials believe. Indeed, many hepatitis C myths persist. An estimated 60 percent of infected people got the virus from injection drug use. That has led many to believe that hepatitis C affects only drug addicts and prisoners. But almost a half million people are living with hepatitis C because of blood transfusions before 1992, according to a CDC estimate, including many women who had Caesarean sections. Despite calls from Congress, the government never followed through on a plan to notify thousands of them. (See related story on page A-1.) The disease also has emerged as a potentially devastating occupational hazard for veterans, health-care workers, firefighters and others who are exposed to blood in the workplace. Last year's disclosure by actress Pamela Anderson that she carried the disease prompted numerous stories, but interest in the former "Baywatch" star hasn't yet carried over to widespread understanding, or acceptance, of the virus. As a result, some hepatitis C patients are reluctant to admit having the disease. There's too much of a stigma, says a seventh-grade teacher in Kansas City who asked not to be named. She said she got the disease from a medical procedure. "I worry that my students would have the wrong idea," she said. "Their basic knowledge is that crackheads and prostitutes and inmates get hep C. Not their favorite teacher." A bill filed in May in the U.S. Senate could finally help educate the public about hepatitis C. The legislation, introduced by Sens. Kay Bailey Hutchison and Edward M. Kennedy, would spend up to $90 million a year on fighting the disease. The bill "takes a new approach to fighting this virus by establishing a nationwide plan to provide the most effective ways of prevention, control and medical management of Hepatitis C," Kennedy, a Massachusetts Democrat, said in a written statement. The Hepatitis C Epidemic Control and Prevention Act is still far from passage and funding, however. Dormant danger Hepatitis C came to light in the early 1970s when scientists determined that a virus different from hepatitis A and B was infecting hundreds of thousands of Americans each year. Scientists estimate that millions of people were infected in the 1960s and 1970s through blood transfusions and injection drug use. Some said up to 10 percent of transfusion patients still were being infected in the early 1980s, or up to 300,000 a year. Improved blood screening beginning in 1987 helped cut the number of all new HCV infections. Some people clear the hepatitis C virus completely from their bodies, and many others never get sick. Of those who do, most survive and eventually die of another cause. But many who contracted hepatitis C in earlier decades are now beginning to show symptoms. That's why it's called the Silent Epidemic. The virus, which attacks the liver, can lie dormant for 10, 20 or 30 years before a person even notices any health problems. During those quiet decades, the virus can slowly corrode the liver. Eventually, some patients begin noticing fatigue, nausea and joint pain. Some endure a lifetime of suffering from cirrhosis and other ailments. Dale Muir contracted HCV at his job while inspecting defective catheters contaminated with infected blood. The virus led to a bone marrow disorder, which required him to get transfusions more than 300 times. "For seven years I lived on blood transfusions," said Muir, who cried as he recalled the ordeal. Other patients go on to liver cancer, and some to a lingering death. In May, after spending three weeks in a coma in a hospital, Susan Wohlert went home to Raytown to die. The 40-year-old woman, who says she never drank or did drugs, believes she was infected by a needle stick when she was 13 and volunteering to help clean a medical facility. Two decades later, she was diagnosed. Now she spends her days in bed or slumped in a chair unable to hold up her head. "It's painful everywhere," Wohlert said. Treatment sometimes can head off the disease if it is discovered early enough. But treatments, which are improving, remain long and sometimes torturous. They still have only a 50-50 success rate or worse -- especially for African-Americans and Hispanics. There is no vaccine. When treatments don't work, the last chance usually is a liver transplant -- if one is available. Teri Gilliland didn't discover she had hepatitis C until 20 years after a transfusion she believes was tainted. The Maryland nurse nearly died before she received a new liver in 2001. A diary kept by her mother, also a nurse, described her condition a few days before the transplant: "more intense oozing of dark blood from mouth and nose." And Gilliland was lucky. More than 1,800 people -- a third of them hepatitis C patients -- died in 2002 while waiting for a liver transplant. The shortage of donated livers is expected to increase as the disease blossoms in patients who contracted the virus years ago. In the next two decades, hundreds of thousands will die from hepatitis C, researchers say. One study projects the number of deaths will top 19,000 a year by 2011. By comparison, AIDS trends are difficult to predict, researchers say, but deaths fell nearly 70 percent from 1995 to 2002, a year when 16,371 died. "HIV/AIDS had a constituency, an advocacy group," said former Surgeon General David Satcher. Such a group "had trouble developing around hepatitis C." When the call went out again this year for a national hepatitis C march in Washington, D.C., 200 persons showed up. In cascading rain, the marchers, some in wheelchairs, made their way singing and chanting up Pennsylvania Avenue. Each marcher got a bright yellow T-shirt, but the shirts bore no slogan. "We couldn't afford that part," said Tricia Lupole of Hepatitis C's Movement for Awareness. By the time the group reached Freedom Plaza, the shirts were soaked. Low estimates The national cost of medical care for hepatitis C -- not counting lost work time -- already has reached at least $10 billion each year, according to Milliman & Robertson Inc., an actuarial firm, in a 2000 report about future health costs. The CDC's public and much-quoted estimate of costs, including work loss: $600 million or more. In fact, many CDC estimates seem low. For example, the CDC estimates the total number of HCV infections at 3.1 million to 4.8 million, based on decade-old data. As an official figure, the CDC has settled on a number in the middle: 3.9 million. "Obviously, it's a much bigger problem than that," said Bruce R. Bacon, a leading HCV researcher and head of the gastroenterology and hepatology division at St. Louis University. "It wouldn't surprise me if it were 5 million." Others suspect the number is higher still. "There might be in excess of 5 or 6 million," said Willis Maddrey, a professor at the University of Texas Southwestern Medical Center who has written extensively about hepatitis. CDC officials concede their estimate is conservative -- it doesn't include the homeless, military or hundreds of thousands of infected prison inmates, for instance -- but they continue to use 3.9 million. Of those people, 2.7 million have chronic infections. As for new infections each year, the CDC last year put the number at 25,000, or perhaps 40,000. Actual numbers are important because they would tell health officials how many people might become ill from hepatitis C in coming years. They're also important if hepatitis C is ever to get enough funding, said Sharon Phillips, president of Hep C Advocate Network Inc., a Texas organization that fights for HCV awareness. "We get frustrated every day," Phillips said. In another official figure, which hasn't changed in a decade, the CDC says 8,000 to 10,000 people die from hepatitis C a year. A National Institutes of Health conference in 2002 put the death toll at 10,000 to 12,000 but said that may be an underestimate. But Miriam Alter, the government's leading HCV epidemiologist, defends the CDC's numbers. "People, they like to complain and they like to cast doubt, and they particularly like to cast doubt on the government," said Alter, acting associate director for science in the CDC's viral hepatitis division. "Why people don't have confidence in the hepatitis group specifically, and the CDC in general, is really something I don't understand." Limited monitoring The heart of the confusion: the way the CDC monitors the virus. "I don't think CDC has any kind of active program to control this problem," said Robert Haley, chief of epidemiology at the University of Texas Southwestern Medical Center, whose studies found evidence that the virus may be commonly transmitted through tattooing. (The CDC says that still has not been proved.) Counting hepatitis C infections is not easy because most people never have symptoms. The CDC tracks hepatitis C using state reporting and its own surveys. But some of those surveys are more limited than the CDC has portrayed. For years, the CDC conducted surveys at several sites, but they recorded only new cases of the virus. The surveys ignored the much more numerous chronic cases -- the people who have had the virus for years. In 1998, the CDC finally drew up a plan for surveys to locate chronic cases. The plan proposed five or six survey sites where investigators would go into the community to monitor patients and review death certificates, hospital records and patient logs at clinics. But five years later The Star found that only three of those sites existed. Two of those said they weren't going outside their offices to find patients the way the CDC plan had outlined. The third site declined to comment. Alter acknowledged that the CDC had backed off its plan. The way the surveys were set up was too complex and expensive to use broadly, and the CDC is now rethinking its approach, she said. "We've learned a lot," Alter said. "We have done an incredible job given the resources we have to work with." Beyond its surveys, the CDC has asked the states for 20 years to count cases of hepatitis C -- but only new cases. Not until last year did it ask states to report chronic cases, too, a delay that critics say has impaired efforts to track the disease. And the CDC still won't accept the detailed reports that some states complete about the chronic cases. In fact, at least two states had just been stashing those reports in shoe boxes. That doesn't mean the CDC is ignoring the problem of collecting data from the states, federal officials contend. "It's trying to figure out a system for something we just don't have a system for," said Hal Margolis, director of the CDC's viral hepatitis division. Besides monitoring, the CDC has left much of the responsibility for educating, testing and counseling the public up to the states -- but states have done little. Most don't even have an HCV strategy. The CDC aims to fund a hepatitis C coordinator in each state, and indeed Missouri has a full-time position. But coordinators in some states are far from full-time. Kansas had to try several times for federal funding before a grant finally came through, and then it only allows Kathleen Waters to spend a little over a third of her time on hepatitis C. And instead of educating the public and monitoring the virus, Waters has had to use her hepatitis C time working to find money so the state can continue testing adults for HCV. Money problems were a universal complaint in January at a national hepatitis conference in San Antonio. Coordinators from almost all the states were reduced to sharing computer disks that would allow them to print free hepatitis C posters. "The unmet need on HCV is staggering, and the public awareness is hugely unmet," said Tom Liberti of the Florida Department of Health. "CDC is underfunded, the states are underfunded." Education problem Jean Schmidt has watched hepatitis C balloon in Ohio, where a friend had to resign his job because he became so sick from the virus. And yet so few people know about the disease that Schmidt, a Republican state representative, pushed for state money to fund public forums. "Hepatitis C is going to be the number one infectious disease of the 21st century, and there has been very little public education about it," Schmidt said. Ignorance keeps patients from being tested and treated in time to head off liver damage. Michael Douglas, the Kansas City truckdriver, learned that he had the virus soon after a car hit him 20 years ago as he crossed a street on the way to work, sending him to a hospital where he got a transfusion. But he didn't know he should seek treatment until three years ago, when he began tiring quickly on the job. By then the virus had damaged his liver. "The public is ignorant about this disease, and so was I," said Douglas, a father of five who worries whether he can support his family during treatment. Margolis of the CDC acknowledges much more public education needs to be done but blames lack of money. "Hepatitis C hasn't brought the same flow of resources that HIV has," Margolis said. "We're putting out as much as we can." For example, in 1999 CDC officials publicized the launch of a nationwide poster program that would begin with a $70,000 pilot project in Washington, D.C., and Chicago. But the pilot program never went national. "We just didn't have the money," Margolis said. The CDC's spending for HCV has increased in recent years, growing from $13 million in 2000 to $23 million in 2003. But it still lags far behind domestic spending for AIDS, which grew $142 million during the same period to reach $794 million. The problem is not that AIDS receives too much money but that hepatitis C receives too little, said Brian Klein, founding member of the Hepatitis C Action and Advocacy Coalition in San Francisco. "It is not a battle between AIDS and hepatitis C," said Klein, who is co-infected with both diseases. Margolis agreed. "I don't know how to express my frustration," Margolis said. "We need more resources." But some lawmakers have questioned how the CDC has spent its HCV money. Indeed, Caplan, the former blood safety committee chairman, said that hepatitis C funding is a matter of priorities. The CDC didn't need a lot more money than it already had to implement an education campaign, he said. "They could have pulled it off inside their budget without strain," Caplan said. Congressional committees have tried to push for more aggressive warnings to the public, but with little success. A 1998 congressional investigation led by Rep. Christopher Shays, a Connecticut Republican, came to this conclusion: "Unless confronted more boldly, more directly, and more loudly by the Department of Health and Human Services, the threat posed by hepatitis C will only grow more ominous." Health and Human Services Secretary Donna Shalala and Surgeon General Satcher pledged to undertake public education campaigns. In fact, the CDC was already putting together a 27-page strategy to detect and prevent HCV. But much of the plan never happened, critics say. The CDC said it had found almost $4 million to pay for the plan but would need $48 million the next year. Health and Human Services never allocated the funds, though, and never asked Congress for that additional money, according to congressional staff members and others. "No moneys were requested for the broad public education campaign by Secretary Shalala," said Anne Marie Finley, who authored the 1998 congressional report and now is a health policy consultant and lobbyist. Shalala, now president of the University of Miami, said she could not remember whether she made the request. In 1999, Shalala still was reassuring a worried former Surgeon General C. Everett Koop that Health and Human Services indeed was alerting the public. The department had "initiated an extensive educational effort," she wrote Koop in a letter obtained by The Star. But the next year a department advisory committee still was pleading with Shalala to seek funding for a "widespread means of informing the American public." Shalala and department officials didn't, committee members said later. Shalala said recently she had no budget records to remind her what the department requested. But, she said, "None of us has ever done enough on this issue." In fact, the lack of public education sparked a House Commerce Committee investigation into whether the CDC was diverting money from hepatitis C education programs. Rep. Tom Bliley, a Virginia Republican, dropped that investigation in July 2000. At about the same time, as Bliley looked on at a press conference, Satcher announced he would send a "Dear Citizen" letter to every household in America warning about the epidemic. Satcher's office didn't have the $30 million to $40 million for postage, so he said Congress would help mail the letter. "It's a win for the American people," Satcher said. But it turned out Congress had legal problems mailing a letter from another branch of government. Apparently no lawmaker ever mailed the letter. That surprises Satcher, who in an interview said he assumed the letter had been sent. He thinks it still should be. Margolis said other HCV information has gotten out. For example, the CDC has set up a Web site about hepatitis and sent public service announcements to media outlets, although Margolis doesn't know how effective they were. Indeed, the CDC has never evaluated the success of its public education program because there wasn't much to evaluate. "Until recently, we thought so little had been done," Margolis said. It's no wonder last year's National Institutes of Health nationwide conference for doctors on hepatitis C made this its first recommendation: "Educate the American public." Satcher said it isn't too late to conduct the kind of public education campaign the 1998 plan envisioned. "I think it is sad that it hasn't been more aggressive and implemented, but I believe that it still can be implemented," Satcher said. "We can still save a lot of lives."
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Includes prodigious linkage (including a link to the Krever Report!) as well as the documents uncovered.
Let me know when you do, and I will add them to the mass email I am composing now, and likewise, if you can't find them, let me know and I'll try running a search of my own-- most of the Blood Trail links I have are rather elderly and I could use some newer ones.
EDITORIAL, KC Star, Posted on Tue, Nov. 11, 2003Abysmal warnings about hepatitis C
The failure of federal health officials to alert the public about the risks of hepatitis C is a shameful story of inattention, incompetence and dereliction of duty.
As a series of articles by Kansas City Star reporters Karen Dillon and Mike McGraw disclosed this week, millions of Americans carry this damaging disease but don't even know it. A big reason is that time after time, the government fell down on its job of educating the public so that persons with hepatitis C could seek treatment. Government officials must do better.
When Congress looks into this outrage, one result should be more funding to allow the Centers for Disease Control and Prevention, the U.S. Food and Drug Administration and other federal agencies to inform the public and do what they can to make sure Americans have treatments available to them in a timely way. Legislation introduced by Sens. Kay Bailey Hutchison and Edward M. Kennedy calls for spending $90 million to alert the public to this silent killer. Congress should pass this quickly so the government finally can meet its long-neglected responsibilities.
Hepatitis C is a liver disease caused by a blood-borne virus, which can stay in the body for decades before damage is detected. Estimates of the number of Americans who have been infected run as high as 5 or 6 million, though the official estimate is closer to 4 million. Nearly half a million Americans carry the disease because they received transfusions of impure blood before 1992. There was a government plan to notify thousands of them so they could be treated, but the plan was never implemented. This failure was unconscionable.
Hepatitis C has had a reputation of being a disease contracted mostly by drug abusers, prostitutes and prisoners. But it hit other populations, partly because of the governmental failure to confront the ailment and educate people about getting checked and about their treatment alternatives.
Because the hepatitis C virus is spread through blood, it also has become a dangerous workplace hazard, especially for health-care employees.
Treatment, if started early enough, sometimes can stop the disease. But treatments can be difficult and painful, with a success rate of only about 50 percent. Some persons seem to be able to flush the virus that causes hepatitis C from their systems without treatment. Once the virus begins damaging the liver, however, medical intervention often is needed.
Other diseases have attracted much more federal research money than has hepatitis C. This year, for instance, the Centers for Disease Control are spending $23 million on hepatitis C work. By contrast, they are spending $794 million on AIDS.
AIDS research and treatment is not overfunded. Rather, hepatitis C work is badly underfunded, and many Americans are suffering as a result. The National Institutes of Health are spending more than $100 million this year on hepatitis C research, but that represents much less than what experts say is needed to understand and combat the disease effectively.
An important role for government is to do for citizens what they cannot do on their own. Monitoring diseases, warning Americans about them and funding research and treatment are classic examples. But as hepatitis C has spread, government has failed to do its job.
That would be tremendous. I'm sure I have a bunch of the early posts copied somewhere, but finding them is another matter! I'll search when I'm able.
One of my Aunts died of liver cancer, a direct result of Hep C, which she contracted during surgery many years before.
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