The Ghost Virus
Thirty folding chairs. Thirty stories. There is the one being told by a young man, a retail manager in a worn leather jacket who looks as if he'd rather be nursing a beer at Champps. Another by a middle-aged truck driver whose wiry beard snags on the collar of his plaid pullover, and who appears to be running on empty after three days on the road. The story being told by a college student who arrived tonight with her backpack bursting with books, her frizzy ponytail jutting from the back of a baseball cap. And by a Vietnam vet bouncing his aluminum cane. By a retired nurse massaging her swollen ankles. Stories by recovering alcoholics, business executives, a heroin addict, a single mom, a widower--all of whom have gathered in the basement of the Shepherd of the Hills Lutheran Church in Shoreview on this snowy Tuesday evening in January. And here they'll sit for the next two hours, pressed together in their metal chairs in four makeshift rows, trying to make sense of their stories.
Helen Clark still remembers walking into this room for the first time. It was spring 1998 and she had recently been diagnosed with hepatitis C. All she knew about the liver disease then was that it could kill her--sometime, somehow. Even her own doctors couldn't explain exactly whether or why the virus would attack her immune system. It wasn't like cancer, or back pain, or AIDS. It was a clandestine disease that could easily disguise itself, fade away without warning, and then return unannounced, even after being diagnosed and treated. "I felt so isolated," Clark, who is now 59 years old, recalls of those early months. "I had reached the point where I wanted to talk to someone so badly that when I was out shopping I had this urge to go up to everyone walking around the mall, shake them, and say, 'Do you have hepatitis C? Do you know anyone who does?"
Clark got the answers she was hoping for when she walked into a LiverHope support-group meeting. In the church basement that night, she gathered up a small paper storm at an information table stacked with articles from niche publications and medical journals. She learned that her disease didn't even have a name until 1989, that it could play possum for decades before being discovered, and that many doctors were still slow (and sometimes unwilling) to test those most at risk of carrying the virus. She listened to guest speakers from pharmaceutical companies that were working to find a cure; they were hopeful but cautious, Clark learned, in that even the most promising drug therapies were accompanied by intensely negative side effects and had a 75 percent failure rate. She met dozens of other people who had also been stigmatized in ways Clark knew all too well: the awkward silence of her neighbors, the friend who'd stopped calling. (Hepatitis C can be contracted in a number of ways, but because the virus is commonly spread by contaminated needles during intravenous drug use, it has often been portrayed in the media as a "junkie's disease.")
After that first meeting, Clark, who has been rendered so thin by her illness that it seems she might suddenly blow away, turned into a crusader of sorts. When the founder of LiverHope moved away, Clark and her friend Patricia Buchanan, who was diagnosed in 1995, took charge of the group. In short order the 30 folding chairs became their obsession. Most days the two women spend hours online, tracking medical trials being conducted by pharmaceutical firms, keeping tabs on the health-insurance industry, and doling out advice on subjects ranging from liver biopsies to massage therapies. They work the phones, encouraging reporters, public officials, and members of the medical community to invest the time and money necessary to educate the public and their doctors about the disease.
The federal Centers for Disease Control and Prevention (CDC) in Atlanta, Georgia, estimate that a minimum of 4.5 million Americans are infected with hepatitis C. The disease is already the leading cause of liver cancer and liver failure in the United States, as well as the number one reason for liver transplants. If current trends hold, in ten years 30,000 Americans will die as a result of hepatitis C annually--the same number as those who died of AIDS in 1996.
Beyond U.S. borders the figures are even more daunting. A year ago Egypt reported that 15 percent of its population was infected. In Europe there are 9 million people carrying the virus. Worldwide the number is approaching 200 million. "This is the most significant infectious disease of the 21st Century, in terms of total mortality," Alan Brownstein, president and CEO of the American Liver Foundation, observes from his office in New York City. "The problem is, hepatitis C is silent. The liver is a noncomplaining organ. So most of the time when people do finally get symptoms there has been so much damage that they're beyond the reaches of treatment."
In the two years since Clark and Buchanan teamed up, hepatitis C has made an appearance on the popular media's radar screen, if only briefly. At LiverHope meetings Clark always has copies of articles that were published in the New Yorker and Penthouse in 1998 (the latter "without the pictures," she notes with a grin). Both pieces, and a smattering of others written since, read like the public-health alert LiverHope is so hoping for. The stories also include passages that lead the reader to believe federal health officials are on the verge of making hepatitis C a priority. In the New Yorker piece, for instance, writer Jerome Groopman, a professor of medicine at Harvard, concludes that the surgeon general of the United States, Dr. David Satcher, is committed to fighting the "looming epidemic" and cites Satcher's intention to lobby for a public-education campaign. So far, though, that promise has gone unfulfilled.
The federal government has yet to launch a comprehensive public-information effort, and while the CDC is spending millions on research, advocates such as the Liver Foundation's Brownstein believe they should be spending hundreds of millions. Sure, there is some media coverage now and then, Brownstein allows, but the kind of followup needed to drive the message home to those most at risk will probably happen only when a full-blown public education drive is in place. "We need an outcry," he says. "Because without it we won't be able to drum up the political movement needed to fund research and inform the public."
Information. Stories. At LiverHope tonight, every scrap of data, each personal anecdote, any news of progress in figuring out how to stop the deadly virus is savored. Until that happens--or at least until its rampage slows down dramatically--Patricia Buchanan and Helen Clark believe hepatitis C will continue to live up to its nickname: The Silent Killer. "In ten years hepatitis C will be a pandemic," Buchanan exclaims. "And no one is talking about it."
When Dr. Coleman Smith came to the Twin Cities in 1985, so little was known about hepatitis C that, in the rare cases that were diagnosed, he and his colleagues referred to the disease as non-A, non-B hepatitis. Those with the hepatitis A virus usually contract it by consuming food or water contaminated by human waste and, after suffering from nausea for a few days, beat it off as they might the flu. Hepatitis B, which is passed through sexual contact or exposure to infected blood, is more serious and widespread. The CDC reports that 1.2 million people in the U.S. carry the virus at any given time. Still, the immune system prevails in all but five percent of cases. Vaccines for both hepatitis A and B are available, meaning that people in high-risk groups can, once inoculated, stave off infection. No such vaccine exists for hepatitis C.
Smith, a native Australian who works as a hepatologist for Minnesota Gastroenterology, an organization comprising 41 physicians, guesses that in the past ten years he has treated at least 3,000 patients suffering from hepatitis C, which is spread primarily by infected blood. Nowadays he sees at least ten patients with the disease every week. All of them have heard the stories about what could happen: liver failure, liver cancer, internal hemorrhaging, delirium, death. All of them are terrified, wanting to know their chances, what can be done, how bad it could get. Smith has only so many answers. Those things he can say with a degree of certainty are often not comforting.
Of the 4.5 million Americans thought to have hepatitis C, only one-quarter know they're infected. Sometimes the body will send warning signals by way of symptoms that include muscle aches, fatigue, or stomach pain. More often, though, the disease announces itself only after the liver has been severely damaged. "It's subclinical," Smith explains. "Sometimes there are symptoms, but it's unclear whether this discomfort is directly related to the disease. Most of the time you don't feel anything."
While the body stays silent, however, it is being ravaged. When people contract hepatitis A or B, they usually manage to subdue the disease after a spell, and then develop immunity to future exposure, much like one would with mumps. Hepatitis C, on the other hand, is an escape artist. When the body comes up with a weapon to fight the virus--an antibody or a T cell--the virus shifts its shape and its traits, allowing it to steal away.
Eventually the virus takes refuge in the liver. There it might stay dormant for decades, sometimes even a lifetime. ("In some people it progresses so slowly that they'll die of old age before they die of the disease," the Liver Foundation's Brownstein notes.) At other times it will attack. It hardly ever leaves on its own; 85 percent of people who contract the virus carry it their whole lives.
On the offensive, unchecked, hepatitis C tramples the liver, first causing inflammation, then scarring, and ultimately cirrhosis, which is irreversible. In the virus's final stages, blood won't flow through the organ, so it backs up, causing what have been described as a kind of hemorrhoids in the stomach, esophagus, and throat. The platelet level in the blood also starts to drop, so the patient begins to bleed and bruise easily, creating the need for numerous blood transfusions. Because the liver stops eliminating toxins from the blood, it becomes rich in ammonia, which in turn can damage the brain. In extreme cases, the only way to fend off death--which is usually preceded by a coma--is to receive a transplanted liver. But healthy livers are scarce and the waiting list is long.
If hepatitis C is detected before too much damage has occurred, and it has been determined the disease is on the move, it can sometimes be held at bay with drug therapy. The most effective treatment, a combination of drugs not unlike an AIDS cocktail, works about 40 percent of the time. Some, like Helen Clark, also believe using alternative medicine--traditional Chinese herbs, acupuncture, massage--assists the immune system in finding ways to halt the virus's advance. While there is plenty of anecdotal evidence (but no clear scientific data yet) available to prove this assertion, even pragmatists like Smith tend to agree that alternative approaches can at least help patients with their pain.
Sometimes hepatitis C will show up in a routine lab test as a slight elevation in a person's liver enzymes. When a patient appears otherwise healthy, though, this elevation is all too often ignored; the elevated levels can also be caused by nothing more than a glass of beer or a poor night's sleep. There is a special test to screen for hepatitis, but it is not used routinely. It's only given when a doctor thinks a patient might have been exposed to the virus. In either case doctors must know enough about a patient's history to determine whether they're at risk for the disease. So far--in part because the general public is ignorant, in part because primary care physicians aren't paying close enough attention--a discussion of risk factors rarely comes up during the course of a regular exam.
About 20 percent of those infected with hepatitis C got the disease from blood transfusions received before 1992. Although the nation's blood banks have been screened for the virus since 1990, the original tests were ineffective some 30 percent of the time. A better test, available for the last eight years, has all but eliminated the chance of contracting the disease through a transfusion. Still, it has been estimated that as recently as 1990 up to 80,000 people a year in the U.S. were being given tainted blood. At least a third of them don't know it yet. Clark, for instance, guesses she was infected back in 1970, when she contracted shigella shigellosis--a virulent form of dysentery--and in the period of a few days received 18 blood transfusions at a Miami hospital.
Many of those with hepatitis C (between 50 and 75 percent, depending on whom you talk to) likely used intravenous drugs and came into contact with infected blood through a shared needle. Even though the AIDS epidemic has caused greater public awareness around the need for clean needles, many men and women who experimented with drugs in the 1960s and 1970s are just now testing positive for hepatitis C. "This isn't a new epidemic," Dr. Smith stresses. "It's just that we're finally seeing the results of an old epidemic."
Hepatitis C can also be spread sexually, but scientists can't agree on what kind of contact or what population is most at risk. Kissing or heavy petting alone don't directly lead to infection, but blood can be present in both semen and vaginal secretions. Those with multiple sex partners are at a higher risk statistically, but Smith guesses that's partly due to other factors; IV drug users, for instance, tend to be more promiscuous. Researchers at the CDC have also determined that the virus can be passed through shared razors and toothbrushes, and by way of a straw or rolled-up dollar bill being used to snort cocaine. Smith says it's a good guess that tattoos and piercings done under unsanitary conditions may one day be blamed for a whole new generation of infections.
Tracing the virus back to its genesis is one thing; diagnosing it is another. "Here's the problem," says Dr. Kenneth Sherman, director of hepatology and liver transplant medicine at the University of Cincinnati Medical Center, "Primary care physicians wait for signs of late-stage liver disease. Then those patients are untreatable with the therapies available. If we could begin to identify people at risk, then we could treat many of them early enough to have some success. But we aren't doing that."
When John Hale (who asked that his real name not be used) was in sixth grade, he started smoking marijuana with his brother at the school bus stop. He was an alcoholic before he reached puberty. By the time he graduated from high school, he was shooting up. The next ten years played like a Tarantino film: weeklong drug binges, stints in prison, one-night stands. Finally, at age 35, Hale is living a sober, suburban life. Two years running. One meeting at a time.
Even a medical student should've had the sense to administer a blood workup for hepatitis C. Hale's history of IV drug use and multiple sex partners alone justified a test. That the rate of infection in our nation's prisons ranges from 25 to 60 percent at any given time should have made it automatic. But Hale's doctor never mentioned hepatitis. A little more than a year ago, he did run a blood check for AIDS, wrote a referral for psychiatric treatment, and gave Hale a clean bill of health.
"I met this guy at an AA meeting a few months later and he started talking about hepatitis," Hale remembers. "When he told me it's easier to get than AIDS, I went back to my doctor and told him to check me out." Now, every month or two, Hale stops by LiverHope to keep abreast of scientific developments and meet others who share the virus he was diagnosed with that day. "My doctor tells me not to worry about it," he says with a quick chuckle. "And that makes me worry."
According to Dr. Sherman, stories like this are all too common. "My impression, with some notable exceptions, is that the level of knowledge and expertise about hepatitis C among general practitioners is abhorrent," he remarks with a sigh. "The key is to find patients when they're relatively asymptomatic. Physicians are simply failing to spot at-risk patients."
There are a number of theories as to why family physicians are unlikely to test for hepatitis C, even when a patient's history establishes good cause to. "The first reason is that the disease is silent," the Liver Foundation's Brownstein explains. "With other diseases there are symptoms involved: shortness of breath, something. Another reason is that it wasn't really discovered until 1989. It's a relatively new phenomenon. Finally, in most cases the disease takes decades to progress. A lot of people who got it in the Sixties are just getting sick today. That was so long ago they don't even remember they were part of a risk group. For the doctor, unless he does a detailed interview, there's seemingly no causal relationship."
Another hypothesis, based on the experience of many who've been diagnosed with hepatitis C, is that those who are most likely to carry it are perceived to be less worthy of concern. In a first-person account published last year in the Metro, a weekly in San Jose, California, author Kelly Luker guesses that--despite the large number of cases caused by blood transfusions and piercings and infected toothbrushes--the public at large assumes those with hepatitis either engage in reprehensible sexual conduct or are addicted to IV drugs. "I'm willing to bet my love beads that most of the public ignorance about this disease is spawned by fear and denial," Luker writes. "I have what medical sociologists term a 'sin' disease. Like AIDS in this century or leprosy in previous ones, just the phrase 'hepatitis C' can telegraph a catalog of stigmas about its host. Junkie. Sinner."
Dr. Sherman is more charitable. He supposes there are some physicians who stereotype their patients, but says that most of the time hepatitis C is simply lost in the shuffle, overshadowed by other "silent killers" like colon cancer or breast cancer: "I think there is a significant amount of pressure on primary care physicians to do a great many things. And they can't do them all very well. A primary care physician is typically allotted 15 minutes to see a patient in a follow-up visit, where they have to deal with all the issues of screening, from cancer to hypertension, and deal with a patient's immediate needs. In the midst of that, it's difficult to convince them there is another important disease they should incorporate into their routine."
No matter the reason for the medical community's slow response, Sherman and Brownstein maintain that the best approach is to make sure that at-risk patients like John Hale are armed with information. "It takes outside pressure from patients, media bombardment. It's got to be just like breast cancer screening, cholesterol, or prostate cancer--all relatively silent diseases until it's too late to treat them," Sherman says. "In those cases it's been patients going to doctors and demanding screening rather than doctors demanding that patients be screened that's led to success." In other words, teach the patient to school the doctor.
"Whenever you have a new or emerging health risk, the first step is education and awareness," says Bob Tracy, public policy director at the Minnesota AIDS Project. "People must understand enough so that they can present themselves to take advantage of any medical screenings or treatment."
Brownstein says the public information drive around AIDS is a good model for a future hepatitis C campaign. In the early years of the epidemic, activists forced the federal government to pay attention, in part because the disease was moving so fast and with such visible aggression. At the same time celebrities who contracted the disease (Rock Hudson and Earvin "Magic" Johnson being two of the most notable) captured the public's imagination. Cover stories were penned, special reports were aired, and bestsellers were published. "With AIDS we acted quickly. With hepatitis C we did not," Brownstein says. "Now we have to catch up."
In the last two years, hepatitis C has gotten more attention. There are celebrities speaking out about living with the virus, such as country music star Naomi Judd (honorary spokesperson for the American Liver Foundation). Articles on "the shadow epidemic" have appeared in a few national publications. In the Twin Cities, broadcasters at KSTP-TV (Channel 5) and Minnesota Public Radio (KNOW-FM 91.1) have hosted discussions about the disease.
Still, Dr. Sherman believes the media attention has been too sporadic to cause a groundswell. "It hasn't been constant, it hasn't been repetitive like it was with AIDS," he complains. "Clearly the CDC and American Liver Foundation have made efforts to increase awareness in the population. But I don't think those programs will have a major effect until they're picked up by major media sources and the themes are played over and over again."
Brownstein agrees with Sherman's analysis, but points out that the federal government has yet to make a financial commitment to a public education campaign. "The American Liver Foundation has invested more money than the federal government and state governments combined. And we've only spent $6 million over the last five years," Brownstein protests. "The Feds have put together maybe $2 million in public awareness funds. In contrast, the government has spent literally hundreds of millions of dollars on AIDS awareness. I'm not saying that money shouldn't be spent on AIDS awareness, I'm saying the same urgency has to apply to hepatitis C."
Locally, according Dr. Kris Ehresmann, an epidemiologist with the Minnesota Department of Health, there aren't even funds available to produce a brochure about the virus. "In 1997 we started making plans for hepatitis C surveillance, so we could get a handle on what's happening in Minnesota," she says. "That's been one of our primary activities, funded by money from public foundations. We have staff who are able and willing to answer questions and we have information to hand out from the CDC. But we don't have a large public-education campaign simply because there is no money available at the state or federal level for hepatitis C activities."
The American Liver Foundation has put together a proposal asking the federal government to spend $73 million on a yearlong information drive. And while there's no timetable in place for making it happen, Brownstein is already crunching the numbers: "We would spend $10 million on a special advertising campaign. One million to educate primary-care physicians. We would put $20 million into a fund that would directly subsidize state health departments. Information and referral services, along with counseling support would cost $30 million. Evaluating the effectiveness of different strategies could be done for $10 million. The final $3 million would be used to help the CDC to do surveillance, to learn what populations we were best reaching. There's nothing worse than spending a pile of money on a poster that doesn't do jack."
Patricia Buchanan has never run a marathon, but she knows the utter exhaustion of a marathoner at the finish line. Every other Tuesday the 47-year-old mother of four spends the day preparing herself for LiverHope's two-hour meeting. She might work on her computer a bit, put out a few calls, but she avoids even taking a shower--which for her is a strenuous act--until late in the afternoon. Whatever energy she can muster is conserved for the group. The day after the get-together, she sleeps in late, spent, and her brain stays in a fog.
Without question the work of a crusader is exhausting. But Buchanan's struggle to stay "up" for LiverHope's evenings is more about her personal struggle with hepatitis C. In November she finished a year of drug therapy to keep her disease from progressing. The treatment involved an injection three times a week and six pills a day. The side effects included nausea, diarrhea, headaches--in short, a severe case of the flu, all day, every day. Three months into the treatment, she began taking an antidepressant. Even though Buchanan has been off the regimen and her virus has been in remission for almost three months, the fatigue lingers. "I'm feeling better every day," she says. "It's very slow. I certainly don't have any stamina. If I have an activity planned for one day, I don't dare have one for the next day."
This was not the first time Buchanan had undergone treatment (which her doctor, Coleman Smith, says is comparable to chemotherapy). In 1996, when she first learned she was infected, Buchanan began taking the drug interferon, a protein that's supposed to be made by the body to boost its own immune system; at the time it was the most effective way to stop liver scarring (though even then it worked in only about ten percent of the cases). The treatment, which causes extreme enervation and depression, failed. Her latest attempt, which combined another version of interferon with the antiviral drug ribavirin, seems to be working. If she can make it another three months with no signs of recurrence, the odds are very good that she will stave off cirrhosis.
But the chances that Buchanan or anyone else suffering from hepatitis C will make it to the six-month mark and stop the disease in its tracks aren't even 50-50. It is that fact, more than any other, that causes anxiety for those who've just been diagnosed with the virus. Even if doctors begin testing for the disease earlier and more frequently; even if federal, state, and local governments finally begin to spend money to spearhead a comprehensive public-information campaign; the question of what can or should be done once the disease begins to progress has no definitive answer.
Even the best treatment is effective less than half the time. The newest drug regimens are profoundly taxing to the human body. Some patients have been hospitalized because the side effects are so severe they can result in systemic shutdowns. The drugs can also cause biochemical shifts that lead to depression. In rare cases patients undergoing treatment have committed suicide.
Imagine, then, how difficult it is for hepatitis C carriers and their doctors to decide when and if they should risk a "cure." One mitigating factor is the patient's age. If a 50-year-old man has been infected for two decades and the disease has just started to progress, will he live long enough for the virus to be life-threatening?
Most often, the calculation is one part actuarial table and one part blind hope. Then again, what if the disease stays dormant? What if it speeds up? What if the treatment becomes physically unbearable? (Even representatives from Schering-Plough, the U.S. pharmaceutical company that markets ribavirin, are careful not to downplay the side effects of drug therapies.) What if you're not as lucky as Patricia Buchanan finally hopes to be? What if the treatment doesn't work? Then what?
Michael Decorsey was diagnosed with hepatitis C in 1996. A year later Dr. Coleman Smith did a biopsy to gauge any liver damage. The disease, it turned out, wasn't life-threatening, not yet. Decorsey, who lives in south Minneapolis and turned 50 last year, figured he'd try treatment in order to keep the virus from attacking his liver. Schering-Plough was sponsoring a study to test their newest combination therapy, rebetron. He decided to give it a try. Hours after getting his first injection in August 1998, he felt fine. "There I am, sitting in Dr. Smith's office, eating my scone, drinking my double latte and thinking, 'Shit, I can beat this,'" he recalls. "I've got three months of medical disability, this is going to be great."
Come nightfall he was in hell. "By the time I got home, I felt like I was standing in rush-hour traffic and everyone in the Twin Cities was running over my body," he says. "I called Helen [Clark] that day at LiverHope and left a message. I said, 'My God, I've just been shot.'" Within a month Decorsey, drained by the intense side effects caused by the rebetron, became anemic. Smith reduced his dosage. The crisis continued: joint aches, muscle spasms, recurring dreams, nausea, exhaustion.
After several months Decorsey's condition stabilized. Slowly, and on a limited schedule, he went back to work as a long-haul truck driver. But three months later, he was blindsided by a debilitating bout of depression while behind the wheel in Indiana. "All I remember is that I was driving and I saw this sign for a Meires store, which is a pharmacy down there like Wal-Mart, and I pulled in the parking lot and walked up to the pharmacist. I was shaking and crying. I gave him the number to Coleman Smith and my regular doctor."
Decorsey had his dispatcher route him home. The trip took days, and was broken up by long layovers at truck stops along the way. "I stayed put about a day and a half and just kept talking on the phone with my friends and family. My doctor put me on an antidepressant and prescribed some herbs that helped a lot. Still, I started questioning my sanity. My whole world just exploded outwards. I started to wonder why the hell I was still here. I began to entertain the idea of suicide."
Through it all, Decorsey had the presence of mind to stay in touch with Helen Clark and Pat Buchanan, whom he calls "The Liver Police." "They were my lifeline. They were that safety ring that I could actually grab onto and hold onto, even though I seemed to be living outside of my body. They were people that had gone through what I had gone through. They got me home."
Not long afterward, Decorsey learned that the rebetron hadn't worked. Instead his virus had progressed. "Let's say there are four steps to checking out. Right now I'm on the first step heading for the second. When I reach the third step, that's when I'll have to make a decision. I can't see doing a liver transplant. And I'm not going to go through treatment. I'm not going through that hell again. When the treatment is worse than the illness itself, well, that's just stupidity.
"So what would I do? At this point I'd just have to say"--and here Decorsey pauses, bearing in mind his odds--"the life I've lived is good."
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