Millions Infected With
Ruthless Hepatitis-C
By Robert Davis
The hepatitis-C virus probably has been inside Mary Johnson for 30 years.
After the birth of her daughter, she had an emergency hysterectomy and received 7 pints of blood from strangers. That was in 1969, long before donated blood was screened for hepatitis C, known as HCV, a cousin to the better-known hepatitis-A and -B viruses.
Johnson, 61, who works for a Dallas retail store, is among nearly 4 million Americans believed to be infected with HCV. The virus is perhaps the most insidious of the hepatitis family: It destroys the liver over decades without the victim knowing it's there.
By the time HCV is detected, usually through symptoms such as a sense of weakness, a mild rash or swelling ankles, the liver can be badly damaged or precancerous. Scientists are struggling to improve treatments and find a cure, but their success has been limited.
As many as 10,000 people die from complications from HCV infection each year. But that number is about to soar as the millions who are infected but don't know it begin to get sick.
It takes decades for symptoms of disease to appear. Experts say the silent epidemic of the '70s and '80s, when the then-unrecognized virus was passed undetected through blood transfusions, is just beginning to show itself.
Blood transfusions before 1992 are thought to be the most common way hepatitis C has been spread. But a single injection of an illegal drug, a shared straw to snort cocaine, unprotected sex or a tattoo puts a person at risk.
Today's blood supply is considered safe, and the spread of HCV is waning, but the human price is yet to be paid.
The liver, the body's blood filter, is known as the "silent organ" because it suffers silently with disease. Johnson says her liver "didn't talk to me. It never said, 'I have a headache.' " Now it must be replaced with a transplant if she is to survive. And she will not be alone.
"You've got 4 million people who have hepatitis C," says Johnson's doctor, Robert Goldstein of Baylor University Medical Center in Dallas. "It's going to make the AIDS epidemic look pale." About 900,000 people in the USA are infected with the AIDS virus.
Only 15% of those with HCV develop liver cirrhosis as Johnson did. But 70% develop chronic liver disease. Many will end up with liver cancer.
"It's frustrating knowing what the future might hold for these people," says Charlie Rice, an HCV researcher at Washington University School of Medicine in St. Louis.
Some of the world's leading scientists are in Bethesda, Md., today at the final day of a National Institutes of Health symposium on the disease. The disease is a high priority at NIH, where HCV funding has soared in recent years.
Private drug companies and other research labs are following, in part because they can shift some of their AIDS researchers to a slightly different focus to prepare for hepatitis C.
"This has all the elements for scientific opportunity," says Jay Hoofnagle, director of the Division of Digestive Disease and Nutrition at NIH. "You've got the morbidity and mortality that make it an important issue. Something can happen and will happen."
Unlike the AIDS virus, HIV, which takes root in the nucleus of the cell of its victim, HCV multiplies in the cell's cytoplasm - an area researchers can get to more easily with drugs.
"It's out there waving in the breeze," Hoofnagle says. "With HIV, you have to kill the cell to get rid of it. With HCV, if you interfere with the cycle of replication, you can get rid of the virus. The possibility of a cure is a lot greater."
Awkward age
But for all its promise, the current excitement about HCV research is of little help to people who, like Johnson, are dying of the disease.
Johnson went to a liver specialist when her feet became swollen in 1995. Blood tests revealed HCV, and "he told me there really wasn't anything to be concerned about."
His reaction is typical because doctors are divided over whether people who feel healthy should even be tested for the virus until better treatments are available. While public health officials encourage widespread screening, many doctors hesitate. Why should their patients worry about something they can't do much about?
The health-care industry sometimes takes that line of thinking further, questioning who should pay for unproven treatments. But to prove a treatment effective takes time and a detailed study of thousands of cases. Today's patients will be studied for the answers that are years away.
Meanwhile, doctors such as Goldstein must wait and perform their own studies.
Goldstein would like to screen HCV livers more frequently, for example, looking for precancerous nodes caused by the virus the way other doctors hunt for polyps in colons. If colon polyps removed early prevent cancer, he says, why not go after similar nodes in the HCV liver?
"It's the dilemma that went on for years with mammography and breast cancer," he says. "It's the issue of cost. The sooner you find abnormal lesions, the better off you are."
But the science is not yet there. No proof exists that finding and removing such nodes from the liver would prolong the life of the hepatitis-C patient.
Hoofnagle describes this place where science is trying to answer new medical questions as an "awkward age."
"There is still active debate among clinicians about who should be treated and how they should be treated," Rice says. "I can imagine that for the patient this can be confusing."
'Go about your life'
Johnson says it sometimes is a struggle deciding which treatments to try. Even waiting for a liver transplant makes her uneasy. More than half the patients who get new livers have the hepatitis-C virus return after the transplant.
"I am having some afterthoughts about having a transplant," she says. "A lot of the medications that you take afterward cause some debilitating effects. If I am to receive a liver, then it will happen. If not, I will go on with life as best I can. There are things in life you've got to accomplish, so you've got to go about your life and do those things."
There are thousands of women like Johnson. Studies have shown that during the 1970s and early '80s, 20% of the women who had Caesarean sections were given whole-blood transfusions either during the procedure or afterward to replace blood loss and speed recovery. An NIH study in the mid-'80s found that up to 10% of surgical patients who received a transfusion developed hepatitis C after surgery. As many as 250,000 women contracted the virus that way.
Others at risk for the disease include anybody who received a blood transfusion or organ transplant before 1992. The Centers for Disease Control and Prevention says those people should be tested for the virus, along with anyone who has ever injected an illegal drug and health-care workers who have been exposed to blood on the job.
Fortunately, the number of new infections is dropping, experts say. In 1996 there were 36,000 new infections, compared with 240,000 each year in the 1980s.
Still, the current risk is real. Some doctors say anybody who has had a tattoo should be tested. Even clean instruments can pass infected ink through a tattoo, they say. And about 20% of the hepatitis-C cases have been spread by sex, the CDC says.
Most troubling is that 10% of the cases have been spread by some unknown means. Those people have an extra burden when trying to explain how they got the disease.
"That stigma is difficult" to deal with, says Rolf Benirschke, a former kicker for the National Football League's San Diego Chargers who got HCV from a blood transfusion. He meets others with the virus when he speaks publicly to raise awareness of the disease.
"Many don't have the easy answer that I do, having mine from a blood transfusion," he says. Not knowing where the disease came from can create "issues that are hard to address."
Hoofnagle says it's up to researchers to find scientific solutions fast.
"We can get jaded," he says. "We have to think that we might be able to do something about it."