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Knight Ridder Newspapers
KANSAS CITY, Mo. - The federal government has failed repeatedly to warn the public about the dangers of hepatitis C, a potentially deadly virus that infects millions of Americans.
Each year, 10,000 or more of them will die from the disease - 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 that of AIDS deaths.
But the Centers for Disease Control and Prevention gives hepatitis C much less money and attention than AIDS and West Nile.
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.
And the government has never followed through on a plan to notify tens of thousands of Americans that they may have been infected by hepatitis C from blood transfusions before 1992.
Without an alarm from the government, many people who don't know they are infected won't get treated and will 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.
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."
A bill filed in May in the U.S. Senate could finally help educate the public about hepatitis C. But the Hepatitis C Epidemic Control and Prevention Act is still far from passage and funding.
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 through blood transfusions and injection drug use. Improved blood screening beginning in 1987 helped cut the number of new HCV infections.
But the virus, which attacks the liver, can lie dormant for 10, 20 or 30 years while it slowly corrodes the liver.
Some people can flush the hepatitis C virus completely from their bodies, and many others never get sick. Most survive and eventually die of another cause.
But many who contracted hepatitis C in earlier decades are now beginning to notice fatigue, nausea and joint pain. Some of them will endure a lifetime of suffering from cirrhosis and other ailments.
In May, after spending three weeks in a coma in a hospital, Susan Wohlert went home to Raytown, Mo., to die.
The 40-year-old woman thinks she was infected by a needle stick when she was 13, while 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. There is no vaccine.
When treatments don't work, the last chance usually is a liver transplant - if one is available.
Teri Gilliland did not discover she had hepatitis C until 20 years after a transfusion she thinks 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.
The CDC, in an estimate that has not changed in a decade, 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.
In fact, many CDC estimates seem low.
For example, the CDC estimates the total number of HCV infections at 3.9 million.
"Obviously, it's a much bigger problem than that," said Bruce R. Bacon of St. Louis University, a leading HCV researcher. "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.
As for new infections each year, the CDC put the number last year at 25,000, or perhaps 40,000.
Actual numbers are 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.
Miriam Alter, the government's leading HCV epidemiologist, defends the CDC's numbers.
"Why people don't have confidence in the hepatitis group specifically, and the CDC in general, is really something I don't understand," said Alter, acting associate director for science in the CDC's viral hepatitis division.
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.
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.
Money problems were a universal complaint in January at a national hepatitis conference in San Antonio. State hepatitis C coordinators were reduced to sharing computer disks that would allow them to print free HCV posters.
"The unmet need on HCV is staggering, and the public awareness is hugely unmet," said Tom Liberti of the Florida Department of Health.
Hal Margolis, director of the CDC's viral hepatitis division, acknowledges much more public education needs to be done but blames lack of money.
"We're putting out as much as we can," he said.
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.
In 1998, Health and Human Services Secretary Donna Shalala and Surgeon General David Satcher pledged to undertake public education campaigns. The CDC put together a 27-page strategy.
But Health and Human Services never allocated the necessary funds and never asked Congress for them, 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 was the author of a 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.
But, she said, "None of us has ever done enough on this issue."
In 2000, Satcher announced he would send a "Dear Citizen" letter to every household in America warning about the epidemic. Satcher's office did not have the $30 million to $40 million for postage, but 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.
It's no wonder last year's National Institutes of Health nationwide conference for doctors on hepatitis C made this its top recommendation: "Educate the American public."
A search for patients transfused with infected blood also has stalled.
In 1999, federal health officials pledged to pursue the hunt for at least 188,000 people. It was urgent to notify those people that they might be carrying the virus, officials explained as they prepared for the search.
A delay, according to the U.S. Food and Drug Administration, "would increase each recipient's risk of serious disease complications and speed the spread of infection."
But federal health officials never ordered the search.
Although some hospitals say they have made attempts to find patients, many continue to wait in confusion for the government to act.
Patient groups and even some federal advisers were stunned when told the effort had quietly faltered.
"It's a damn shame," said Alan Brownstein, president and chief executive officer of the American Liver Foundation. "We've lost four years."
But officials say there has been no foot-dragging. The search for patients, known as a lookback, simply takes time to organize, said Jay Epstein, director of the FDA's Office of Blood Research and Review.
Generally, a lookback works like this: A blood bank finds records of donors who have tested positive for a disease, then finds the number of times that donor gave blood. The blood bank contacts the hospital, which traces the patients who received the blood.
In the case of hepatitis C, many in the blood industry continue to be agitated by the thought of a lookback, which they say would be difficult and costly with few rewards.
Many of the patients who are found would not actually be infected, they say. Most of those infected would not be sick, and many of those who are sick would be hard to find after a number of years. Besides, most already would be dead from other causes.
But a member of a federal blood committee said a large group of infected patients still needs to be told.
"Our hospitals have patients coming in today not realizing they are dying of hepatitis C, and they don't know where they got it," said John Penner, a hematologist at the Michigan State University clinical center.
The FDA passed on a chance to order a lookback in 1989. It finally announced one in 1998, and it was largely completed by 1999.
But that lookback sought only 115,000 of the millions of patients who had received infected blood.
Under pressure, the FDA admitted it needed to try again. In 1999, it proposed a second, much bigger lookback that would seek another 188,000 patients.
But four years later, that lookback still has not gone into effect.
And until they were contacted by The Kansas City Star, at least two members of the blood safety committee did not know that.
"I think they just pushed this under the table and just left it," Penner said.
Health and Human Services officials said the lookback remains a priority.
"This administration has not forgotten hepatitis C," said William Pierce, spokesman for Tommy Thompson, Health and Human Services secretary. "It's just that it has to go through a decision-making process."
In some cases, the lookback has moved ahead. Many blood banks say they have given records of infected blood to hospitals.
But many hospitals have not notified patients because FDA rules are not final, blood industry officials say.
And it already is too late to find some patients because transfusion records have been destroyed. The blood industry requires hospital transfusion services to keep them for only 10 years.
(c) 2003, The Kansas City Star. Distributed by Knight Ridder/Tribune News Service.