Hepatitis C: The Hidden Epidemic
Why have so
many baby boomers developed hepatitis C? For some, the answer
goes back to youthful experimentation during the hippie era.
In 1968 Haight-Ashbury, in the
afterglow of the Summer of Love, Steve Cochran* shot up heroin
for the first time. He was 16, one of thousands of teens who
poured into the symbolic center of the '60s to search for utopia
and to sample free love and drugs. "I was hanging out in the
most intense place in the most intense of times," he says. "I
thought of myself as a drug adventurer. I experimented with
Today Cochran is respectably
middle class, a preppy-looking 45-year-old husband and father
living in small-town America. "I never had a drug problem. I was
never addicted," he says of his hippie past. "And I always
thought I was being careful."
Not careful enough. Twenty-one
years after he first put a needle in his arm, Cochran learned
during a routine physical exam that he was infected with
hepatitis C, a lethargic, sometimes deadly blood-borne virus
that attacks the liver. Unfortunately for Cochran, the
highest-risk group is composed of people who have shared needles
to use drugs.
Cochran's is not a singular case:
Nearly 4 million Americans -- an estimated 1.8 percent of the
population -- and perhaps hundreds of millions more worldwide
have hepatitis C. (By comparison, fewer than 1 million Americans
are infected with HIV.) The hepatitis C virus, or HCV, ranks
just below alcoholism as the leading cause of liver disease.
It's also the leading reason for liver transplants. Typically it
induces no symptoms at the time of infection and takes decades
to do its damage. But between 75 and 85 percent of people with
HCV develop chronic hepatitis, according to the Centers for
Disease Control and Prevention. Up to 20 percent develop
cirrhosis, an incurable disease, within two to three decades,
and perhaps half of those progress to end-stage liver disease or
liver cancer. Some patients outlive the virus, enjoying full
lives and dying of causes other than hepatitis C.
But there's no sure cure and no
vaccine, and most people who get HCV remain carriers. Moreover,
there's no way to predict whose infection will flare into a
life-threatening liver disease and whose will simmer for
decades. This year an estimated 10,000 to 12,000 people will die
of hepatitis C. In June 2002 a National Institutes of Health
panel predicted that this annual figure will triple in the next
two decades unless a way is found to effectively treat or
prevent the insidious disease, which has already created a
health care burden of hundreds of millions of dollars a year.
Fallout from the Summer of Love
No wonder experts are calling
hepatitis C -- a virus not even identified until 1989 -- the
surprise infectious disease of the decade as well as an epidemic
in the making. Experts base their prediction of this scourge
partly on demographics and the past behavior of people like
Steve Cochran. While fewer people are becoming infected today,
the number of newly diagnosed cases is rising as the virus,
contracted years ago, surfaces. A 1994 Centers for Disease
Control and Prevention study suggested that white Americans in
their 40s had an infection rate of about 3 percent -- nearly
double the national rate. At 6.3 percent, African Americans in
the same age group have triple the national rate.
What accounts for these high
rates? Baby boomers' youthful experimentation with drugs appears
to be the leading factor. The virus is not only spread by using
intravenous drugs but also, some experts believe, by sharing the
straws used to snort cocaine -- a drug that many Americans in
their 40s and 50s have tried.
More than 30 years have passed
since the Summer of Love. But given the prevalence of
recreational drug use in the '60s and '70s, and the two- to
three-decade progress of the virus, the CDC anticipates a major
spike in liver disease, with "an overwhelming number of persons
needing medical care," including transplants, over the next two
'Now Jane and Joe Middle-Class'
Hepatitis C is already an
inner-city and drug-user epidemic: Infection among IV drug users
is estimated at 60 percent and in the prison population at about
50 percent. A 2000 study in the American Journal of Medical
Science found that of 400 randomly selected hospital admissions
at a Veterans Hospital in Georgia, nearly 12 percent or more
than one in 10 -- tested positive for HCV. Hepatologists have
long known about these high-risk categories. But the results of
the CDC survey surprised even those most familiar with HCV. The
virus has infected not only people who live on the margins or at
the lower end of the social and economic scale, but also plenty
of those in the middle class. From 1988 to 1994 the researchers
went house to house collecting blood samples from 21,267
participants nationwide. The survey did not include anyone
typically considered at high risk -- in prison,
institutionalized, or living on the street.
"This is Joe and Jane Middle-Class
Citizen. To be in the study, you had to have a home," says Emmet
Keeffe, hepatologist and medical director of the liver
transplant program at Stanford University Medical Center.
Bruce Bacon, chief of the division
of gastroenterology and hepatology at Saint Louis University
School of Medicine, sees eight to ten new hepatitis C patients a
week. The disease now makes up 70 percent of his practice. While
up to 30 percent of his patients claim to have no risk factors,
Bacon believes many are suffering the consequences of what he
rather poetically calls "the transient indiscretions of youth."
A baby boomer himself, Bacon has a
midwestern matter-of-factness about the Age of Aquarius. "The
middle-aged Americans who are running the country today were
teenagers 30 years ago," he says. "And like most teenagers, they
weren't always careful. When you're young, you do some stupid
things sometimes. People experimented with injectable drugs, and
they shared needles."
Some can scarcely recall today
what they were doing when "Purple Haze," "White Rabbit," or
"Lucy in the Sky With Diamonds" was a hit song. If pressed, they
may admit to having shared a cocaine straw, or a needle, once.
Unfortunately, that's enough: Most experts agree people need
only a single exposure to contract hepatitis C. While IV drug
use, past and present, is the leading cause of HCV infection,
other sources of infection include:
* Blood transfusion or blood
therapy or solid organ transplant performed before 1992, when
highly sensitive test to screen blood for hepatitis C was
* Kidney dialysis.
* Blood products used to treat
clotting problems made before 1987.
* Health care workers who have
been exposed to HCV-contaminated blood through a needle stick or
splashes to the eye.
* Infants born to infected
Anyone in these high-risk groups,
as well as people with undiagnosed liver problems, should be
screened for hepatitis C, according to the National Institutes
of Health. In addition, it's possible that people can contract
the hepatitis C virus in other ways. Experts advise, for
example, against sharing razor blades or tooth brushes with an
Unsterilized equipment used in
tattoos, body piercing and acupuncture could also pose a risk
for this disease, according to the National Institutes of
Health. If you have shared straws for snorting cocaine, it's
possible you may have been exposed to HCV. Having sex in a
long-term relationship with an infected person is considered low
risk for this virus, but it's still a potential one, according
to the NIH's most recent statement on managing the virus. Anyone
with a history of multiple sex partners may also be at risk for
exposure to HCV.
While researchers understand
better who is at risk for HCV, no one knows how many people are
infected. And because C takes so long to cause serious illness,
no one knows how many will become gravely ill or die. Leonard B.
Seeff, senior scientist for hepatitis C research at the National
Institute of Diabetes and Digestive and Kidney Diseases at the
National Institutes of Health, is one of the original pioneers
of hepatitis C research. He's been studying hepatitis since
1969, and in the early seventies he noticed a mysterious new
infection among his patients that was later labeled hepatitis C.
In fact, scientists used blood from one of Seeff's patients to
infect a laboratory chimpanzee in 1976, helping to prove the new
disease was transmittable by blood.
"This is an iceberg problem,"
Seeff says in a clipped accent that's a holdover from his youth
in South Africa. "We see only a small part of the problem now --
the tip, those ill or needing liver transplants -- and that's
very frightening. But probably 10 times that number have an
underlying, smoldering disease and are asymptomatic. And most of
these people are walking around without a clue they're
These names have been
Hepatitis C Part II: Evading Discovery
uses guerrilla tactics. Typically it slips into the bloodstream
without provoking noticeable illness and lurks for decades. Its
sneakiness is frustrating for clinicians and patients alike.
Hepatitis C has been called a
silent epidemic for its stealthy progress and -- until recently
-- incognito status. Though it's the most common cause of
chronic hepatitis in the United States, many people -- including
some health care professionals -- still connect hepatitis with
type A, the treatable virus contracted by ingesting
feces-tainted food or water. Some Americans first heard of
hepatitis C when it was reported that baseball great Mickey
Mantle, and later beat poet Allen Ginsberg, died from
complications wrought by the virus. Others may have heard that
guitarist David Crosby of Crosby, Stills, Nash, and Young,
diagnosed with hepatitis C in the 1990s, is still flourishing
after receiving a liver transplant.
The hepatitis C virus first showed
up in the 1970s post-transfusion population. It was named for
what it was not: NANB (non-A, non-B) hepatitis. Over the years
about 10 percent of those who received transfusions acquired
NANB. In 1989 the virus was isolated and dubbed hepatitis C. But
HCV has actually been around for at least 50 years. Seeff,
looking at blood samples taken from 10,000 U.S. Air Force
recruits in 1948, has found about the same level of HCV
infection as in the blood donor population today.
Hepatitis C uses guerrilla
tactics. Typically it slips into the bloodstream without
provoking noticeable illness and lurks for decades. A
single-stranded RNA virus, it doesn't integrate into the host
genome (the complete set of genes in the chromosomes of each
cell), a process that would give it a biochemical "address."
Instead, it continuously mutates into different forms of
hepatitis C, which can coexist in the body, evading discovery
and attack by the immune system.
Researchers have identified at
least six genetically distinct types (called genotypes) and more
than 50 subtypes of the virus. An HCV infection can involve
several genotypes, so antibodies to one don't appear to protect
How hepatitis C works
Focusing on the liver, the largest
internal organ, the virus causes an inflammation (hepatitis)
that sets off a slow cascade of damage. Hard strands of scar
tissue (fibrosis) replace healthy liver cells. As the scarring
laces through the liver and thickens, it envelops healthy
tissue, forming nodules and killing liver cells. At this stage
it's called cirrhosis, a disease that interrupts the vital
functions of the liver. The crucial organ loses its ability to
effectively filter toxins, such as alcohol, drugs, and hormones,
and to make the proteins the body needs to repair itself. The
blood flow from the portal vein is partially blocked. With blood
building up, veins in the esophagus and the upper stomach swell
and may hemorrhage.
Eventually the damage may lead to
cancer or liver failure. But it usually takes many decades to
reach this point: HCV likes its host to stay alive. Harvey J.
Alter, chief of NIH's infectious diseases division, has called
it "a survival machine rather than a killing machine," perhaps
the most efficient in the viral kingdom.
With few exceptions, hepatitis C
moves at glacial speed. Many infected people will die of other
causes before HCV becomes a problem, especially those who
acquire the virus late in life. In most, symptoms don't appear
until the second or third decade after infection. But here's the
rub: The majority of those who do get sick have liver damage,
cancer, or even end-stage liver disease by the time they show
In 1958 Wendy Corpening* was an
18-year-old University of California at Berkeley freshman with a
severe case of acne. The drug she was prescribed for the
condition caused aplastic anemia, and it took numerous
transfusions to save her life. The blood also gave her hepatitis
C. Nearly 30 years later, when she was a grandmother, an
onslaught of flu-like symptoms led to tests that revealed HCV
A tall athletic-looking
environmental consultant from rural Angels Camp, California,
Corpening held her own against hepatitis C for more than a
decade. She takes medication to control portal hypertension and
swelling. While she is sometimes overwhelmed by fatigue, she
says most of the time she feels well enough to "push past" the
tiredness and go on with her life.
Peter Vaccaro, a 52-year-old
artist from California recently on sojourn in Hawaii, didn't
learn he had HCV until 90 percent of his liver was destroyed. He
had wondered why he was losing weight and suffering from
insomnia, weakness, severe headaches, and body aches. These
mysterious symptoms came to a head one night, when he began to
throw up blood.
Rushed to a hospital and speedily
diagnosed, Vaccaro was informed he would die without a liver
transplant. "They gave me about a year," he says. Eight months
later, in March 1994, he received a new liver. Immune
suppressant drugs have allowed him to gain back his lost weight,
but headaches and other symptoms have so far prevented him from
going back to work.
Hepatitis C's sneakiness is
frustrating for clinicians and epidemiologists alike. "What
plagues everyone is that we can't predict who will end up with
end-stage cirrhosis or who will do well and outlive it," says
Seeff, who has seen many different outcomes in his years of
research. "Some may well die of something else and never even
know they had it." He suspects the virus may do its worst damage
in combination with other factors. But he doesn't know whose
hepatitis will do minor damage and whose will explode into liver
failure. "I probably have more information on the natural
history of this disease than anyone," he says, "and I can't
predict the outcome for an individual."
Hepatitis C Part III: Living With Uncertainty -- But Living
65-year-old antiques dealer traces her case of hepatitis C to IV
drug use in the '70s, but has made her peace with the past. Her
liver, moreover, only shows slight damage. Here's how she and
other hepatitis C patients are getting on with their lives.
While outcomes with hepatitis C
are uncertain, there's no doubt about transmission. Direct blood
exposure is the most efficient mode.
Fortunately, the advent of highly
sensitive blood-screening tests in 1992 has pretty much
eliminated the risk involved in blood transfusion. Health care
workers still face some risk, but actual transmission of HCV is
small. About 1 percent of health care workers exposed on the job
"HCV is the single most important
occupational risk at San Francisco General Hospital," says Rita
Fahrner, coordinator of the occupational infectious disease
program for the San Francisco Department of Public Health. "It's
an underappreciated risk." Some 40 percent of the patients seen
at the hospital are infected with hepatitis C, according to
Fahrner. But out of 1,000 exposures over a decade, she explains,
there's only been one case where a health care worker became
infected with the virus. The virus is seldom transmitted through
casual human contact, in fact, and most studies show no
hepatitis C in body fluids other than blood. Moreover,
investigations of sexual transmission have conflicting findings.
Most studies of longtime spouses of HCV-positive individuals in
the United States show on average that only about 1 percent are
For this reason, neither the
American Liver Foundation nor the Centers for Disease Control
and Prevention encourages people with HCV or their mates to
change sexual habits or to use condoms in long-term monogamous
relationships. Studies indicate that a partner who hasn't
acquired the virus by the time the infection is diagnosed
probably won't get it, says ALF president Alan P. Brownstein.
"But nobody can say it's absolutely not going to happen. And
because the risk is not clear cut, people who are infected
should discuss whether to take precautions with their partners."
Taking precautions may be particularly important for anyone
whose immune system is depressed. Viral levels of hepatitis C
generally rise in response to immunosuppressive drugs (a
particular problem for transplant patients), for example, or in
response to steroids. Some experts theorize that such increases
make it more contagious by upping the likelihood that it will
turn up in semen or saliva.
As with HIV, the mode of
transmission may carry a stigma. A transfusion is okay, but
there's a shame factor with drug use. Doctors may thus find it
difficult to get straight answers from patients who have used
drugs in the past, especially if the physician's tone suggests
even a hint of judgment or criticism. "You don't know what the
patient doesn't tell you," says Bacon. He advises health care
workers to take a complete patient history and to be open and
accepting about past activities.
Many patients suffer psychological
anguish over what seemed -- 30 years ago -- to be a harmless
good time. After discovering through blood tests for another
illness that she has hepatitis C, Suzette Rooney,* a 65-year-old
antiques dealer, is struggling with her emotional response to
how she became infected. She used IV drugs in the early '70s and
now believes that was the source of her illness.
"I had hoped that I belonged to
the you-don't-know-where-you-got-it group," she says. "Only
today I realize I may have put myself at risk, that I may not
have been honest with myself."
Making a Diagnosis
whether brought on by alcohol abuse or hepatitis C, can cause
the proteins known as liver enzymes to leak into the blood. For
this reason, elevated liver enzymes that show up in a blood test
are a signal of liver damage. So when such proteins show up in a
blood chemistry series, or when a screening test detects HCV
following an attempt to donate blood, selective amnesia like
Rooney's may add to the shock. One patient tested positive when
he went to stockpile his own blood as a safe supply for elective
surgery. Others discover they are carriers when they donate
While treatments are
limited, clinicians agree that early diagnosis can help patients
avoid compounding the problem with alcohol use. Christine
Morosky, 42, a nurse who probably acquired HCV on the job, says
her infection went undiagnosed for years as she became
increasingly exhausted. Some physicians made her feel "it was
all in my mind," she says. Even when a test showed elevated
liver enzymes and she asked for a full range of hepatitis tests,
her doctor requested only the tests for A and B. The diagnosis
of chronic active hepatitis C five years ago was a relief, she
says. "It gave my illness a name, and it gave me an opportunity
to assess my life and my values," she says. She's since tried to
eliminate unnecessary stress from her life and to foster
acceptance of the disease.
"The biggest problem
is not that it kills people," says Teresa Wright, chief of
gastroenterology at the San Francisco Veterans Affairs Medical
Center. "It's the morbidity of this virus. It's how it harms
their lives. The fatigue it causes, the worry about transmitting
it. That's what's difficult to measure: the impact on people."
torment may be the conflicting or incorrect advice patients get
from their doctors. A few years ago Stanford hepatologist Keeffe
saw a patient whose physician had limited knowledge of HCV. "He
had told her it was highly infectious and that she was likely to
infect her husband and children. She stopped making love to her
husband and started to cook all of their meals wearing gloves,"
says Keeffe. "Well, the focus of my consult was to say, 'Take
off your gloves, and get back into bed with your husband.' " Or,
instead of false information, patients may receive virtually no
information. "If they know they have cirrhosis, they know that's
a bad thing," Bacon says. Sometimes, he adds, they've been told
the illness is a death sentence.
"I'll never forget one
lady who said, 'Am I going to die?' And I said, 'Yeah,
eventually. We're all going to die of something.'" Focusing on
the positive, Bacon lays out the lifestyle changes patients can
make to raise the probability of living full healthy lives.
Treating the Condition
Treatments are more
effective at suppressing hepatitis C than they were even five
years ago, but researchers still have a long way to go. The
standard drugs used to battle the virus is a combination therapy
involving pegylated interferon and ribivarin. But it, like its
predecessors, can cause depression, anxiety, and irritability,
and sometimes makes patients feel sicker than the viral
infection does. Interferon, which interrupts viral reproduction
and boosts the immune system, is usually given together with
ribivarin for 12 to 48 weeks. Recent studies show that pegylated
interferon together with ribavirin clear the virus in up to 50
percent of patients who had treatment for the first time. For
people who don't respond to treatment, a liver transplant is a
lifesaving option, but donor organs are in short supply. The
procedure is also the most complex of single-organ transplants
and one of the most expensive.
Frank Vanoli, who is
on his second replacement liver, calls himself a lucky man.
Vanoli, 63, acquired C
from a blood transfusion in 1970 and got his first transplant in
February 1989. The surgery, he says, was "a piece of cake." He
was back to full-time work as a forklift driver within seven
months. Six years later a dental hygienist who was cleaning his
teeth noticed jaundice. Within a month Vanoli had another liver
transplant -- and a new kidney. (Doctors discovered that the
drugs he'd been taking to protect his first transplant had
destroyed his kidneys.) This liver surgery wasn't so easy. When
he came to, Vanoli says, he felt so wretched he thought a light
reflector on the ceiling was the light at the end of his life.
And then he got lucky.
Since that surgery, in 1995, no sign of the virus has been
detected in his blood. His liver enzyme counts are normal. He
feels great. He looks great. He continues to work full-time, and
he's started a support group for transplant recipients in
Monterey County, California. So far his group has counseled 30
people through transplants. "I say, 'Don't be afraid. They can
fix you up. Look at me. I feel so lucky to be alive.' "
Until science has more answers,
people with HCV have to master the challenges of living with
uncertainty. Cochran, who has no symptoms, hasn't been to a
hepatologist for treatment or retesting since 1989. His wife and
son have tested negative for the virus. Cochran likes to think
that as a carrier of the virus, he may be among the lucky ones.
"I even had a margarita the other night," he says. He is
nonetheless careful with his blood and body fluids: He has his
own bathroom, and he and his wife use condoms. Suzette Rooney is
also optimistic; her first biopsy showed slight liver damage but
no cirrhosis or cancer. Christine Morosky is working part-time
in a hospital, where, she says, "It's been an opportunity to
educate my peers."
Sadly, Wendy Corpening, who was
waiting for liver transplant, died in March 2001. According to
her friends, she remained active and forward-looking until the
end. Meanwhile, Leonard Seeff is following up on those
50-year-old blood samples from Air Force recruits by collecting
new samples from those who are still living. Medical records of
the deceased recruits could show whether liver disease was a
factor in death, and Seeff plans to sequence the HCV he gets in
current blood samples to see how it has mutated over the last 50
years. In another study he's looking at medical records and
tracking about 6,000 people who contracted HCV through
transfusions. His enthusiasm, however, may be overwhelmed in the
end by time.
"This is such a long-lived
infection that it outlasts most of us investigators. And, like
HIV, it outsmarts us. One human lifetime is not enough to study
it," says Seeff, who is 61 and sees himself approaching
retirement age with many of his questions about HCV unanswered.
He has, however, an ace up his sleeve: Laura Seeff, MD "I've
produced a daughter who's interested in hepatitis C," he says.
"And she may carry on this work after I'm gone."
--Judith Horstman is a health and
medical writer who has contributed to Hippocrates, Time Inc.
Health, and many other publications.
This special report was adapated
from an article Horstman wrote for Hippocrates, a national
magazine for physicians.
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