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“The only thing necessary for these diseases to the triumph is for good people and governments to do nothing.”

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.


By Judith Horstman


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 everything."

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 decades.

'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 developed.

* 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 mothers.

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 infected person.

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 infected."

These names have been changed.



Hepatitis C Part II: Evading Discovery

Hepatitis C 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.


By Judith Horstman


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 against others.

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 symptoms.

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 and cirrhosis.

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

A 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.


By Judith Horstman


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 become infected.

"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 infected.

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

Liver inflammation, 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 semen.

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."

Compounding this 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.' "

Looking Ahead

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.

Hepatitis C: The Hidden EpidemicHepatitis C Part II: Evading Discovery



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