- 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
- 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
- "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."