Federal government fails to warn public about Hepatitis C

KANSAS CITY, Mo. -- Despite repeated promises, the federal government has failed to warn Americans about the potential dangers of hepatitis C, a virus that infects millions and kills thousands every year.

The Kansas City Star reported Sunday that nearly every public education campaign about the virus has sputtered, with the government often citing a lack of money as the reason.

The government also did not follow through on a plan to notify tens of thousands of patients that they might have been infected by hepatitis C from blood transfusions before 1992.

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 Centers for Disease Control and Prevention, in an estimate that has not changed in a decade, says 8,000 to 10,000 people die each year of hepatitis C. A National Institutes of Health conference in 2002 put the death toll at 10,000 to 12,000 but said that might be a low estimate.

The CDC estimates the total number of HCV infections at 3.9 million, although some researchers think it is higher.

CDC Director Julie Gerberding said in a statement that the government had 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," Gerberding said.

Susan Wohlert, 40, of Raytown, believes she was infected when she was 13, while she was volunteering to help clean a medical facility. She wasn't diagnosed until two decades later, and now she believes she is dying from the disease.

In May, after spending three weeks in a coma in a hospital, Wohlert went home, where she spends her days in bed or slumped in a chair, unable to hold up her head.

"It's painful everywhere," Wohlert said.

But most Americans with hepatitis C still do not know they have it, CDC officials believe.

The virus, which attacks the liver, can lie dormant for 10, 20 or 30 years while it slowly corrodes the liver.

The virus leaves some people's bodies completely and many others never get sick. Most of those carrying the virus survive.

But many who contracted hepatitis C decades ago are now beginning to notice fatigue, nausea and joint pain. Some of them will endure a lifetime of suffering from cirrhosis and other ailments.

The CDC has left much of the responsibility for tracking the disease and educating the public to the states -- but states say they have done little because of money shortages.

"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. He also blames lack of money.

"We're putting out as much as we can," he said.

In 2000, Surgeon General David Satcher announced he would send a letter to every household in America warning about the epidemic. Satcher's office didn't have the $30 million to $40 million for postage, but he said Congress would help mail the letter.

But Congress had legal problems mailing a letter from another branch of government. Apparently no letter was ever mailed.

A search for patients transfused with infected blood also has stalled, The Star reported.

In 1999, U.S. Food and Drug Administration officials pledged to hunt for at least 188,000 people who may have had the bad transfusions. A delay in notifying them that they might be carrying the virus "would increase each recipient's risk of serious disease complications and speed the spread of infection."

But the search was never ordered, according to the newspaper.

Although some hospitals say they have made attempts to find patients, many continue to wait for the government to act.

Patient groups and even some federal advisers were stunned to learn 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 simply takes time to organize, said Jay Epstein, director of the FDA's Office of Blood Research and Review.