MY FRIEND DOUG BEDELL, a reporter for the Dallas Morning News, called me the other day to catch up after a few years spent in separate orbits. We made some small talk, which at middle age seems to consist primarily of personal health updates. I told him I’d finally quit smoking. He told me he’d been diagnosed with hepatitis C, America’s current celebrity virus. “I really don’t feel that bad,” he said. “Most people don’t. But mine’s a fast-moving disease. I already have some minor liver damage.”
Doug found out he had hep C the way most people do. In the course of a routine physical last year, his liver enzymes showed up “elevated,” which can mean anything from one too many cocktails the night before to impending death. Further, more precise testing revealed the presence in his blood of antibodies to hepatitis C and bits of live virus. Just like that, Doug says, he went from being a 46-year-old in good health to someone with a potentially fatal chronic disease with no cure. Though it hasn’t exactly turned his world upside down yet, it has caused a little disequilibrium. Even if he doesn’t always feel like a sick person, he is one now, and that fact can’t be left out of any decision. He has cut out alcohol. He has started to watch his diet. He is paying more attention to how he feels and changing his work routine to make sure he doesn’t stress himself out.
And he has spent countless hours trying to figure out how he picked up this silent killer. Hep C is blood-borne: About half of all infections result from sharing needles, and the remainder are from unprotected sex with an infected person, blood transfusions, kidney dialysis, and other contact with blood that can be as incidental as a shared razor or toothbrush or cocaine straw. In other words, it could have been almost anything or anyone, anywhere. “It must have been the transfusion from the knee operation I had back in eighty-one,” Doug surmises. “And now I may be looking at a liver transplant someday, but then again maybe not. It’s weird. With this disease, you just don’t know.”
Even though stories like Doug’s are regrettably common these days and have been for the past decade, the public health establishment still knows precious little about this late-blooming member of the hepatitis family that infects and destroys liver cells. Even the guesstimates are scary: It is believed that some 4 million Americans are now infected with hep C, four times the number infected with the AIDS virus. And some fear that given hep C’s incubation period and asymptomatic personality—the virus may be undetectable in the blood for three to twelve months after infection, and ten to twenty years may pass before symptoms show—even that number may be low: For every Doug Bedell who discovers he’s sick, how many people won’t find out—until they’re dying of liver disease?
Not everyone with hep C dies, of course. Fifteen percent of those infected will eventually “clear” the virus naturally and suffer no long-term effects. But the other 85 percent will become chronically infected—meaning, at a minimum, they’ll be lifetime carriers of the virus. Some will suffer symptoms like fatigue, abdominal pain, insomnia, and nausea; others will not even realize they’re sick. Twenty percent of those carrying the chronic infection will be diagnosed with either cirrhosis (pervasive degeneration and death of liver cells and disruption of proper liver function) or liver cancer. Since there is no completely effective treatment, many will require liver transplants; in fact, more liver transplants are necessitated by hep C than by anything else. Each year, eight to ten thousand hep C sufferers—or “heppers,” as some call themselves—who don’t respond to treatment or don’t find a donor will die, many without knowing how they contracted the virus in the first place.
“People called HIV the silent epidemic,” says Steve Harris, the medical director of communicable disease and prevention services for the Austin—Travis County Health and Human Services Department. “But it was loud compared to this. With hep C, the largest group infected are people who may not know they have it.” Adds hepatologist Joseph Galati of the University of Texas Health Science Center—Houston, “The patient whose liver is slowly dying may feel no more sick than the one whose virus is dormant.”
Frequent testing is the only way to keep tabs on the bug—but basic blood tests won’t necessarily reveal whether the hepatitis has provoked pathology of the liver in the form of cirrhosis or liver cancer or, if so, how far the degeneration has progressed. A liver biopsy is the only sure way to see if the tissue has started to degenerate. Interferon—a naturally occurring substance that literally interferes with viral reproduction—has been the treatment of choice for those victims whose livers have begun to deteriorate. But the drug arrests the virus in only about half of the patients who take it, and half of them in turn suffer a relapse if the medication is stopped. Interferon is also notorious for unpleasant side effects, including flulike symptoms and depression.
More promising is a new drug cocktail developed by the pharmaceutical company Schering-Plough that pairs interferon and another antiviral drug called ribavirin. Approved by the FDA just this past summer, the cocktail, known as Rebetron, still packs disagreeable side effects but has proved to have more staying power after a patient stops taking it than interferon alone.
The cost of treating hep C, currently estimated at $600 million a year, is expected to increase as more patients discover their disease and seek treatment. As with HIV, there are particular populations in which hep C has reached epidemic proportions: In the nation’s prisons, for example, infection rates run from 40 to 80 percent.
It may seem as if hep C only recently slithered out of the primal sludge, into our blood supply and onto the front page, but scientists believe it first spread during World War II, when blood transfusions became widespread—and blood-borne infections found a whole new mode of transmission. Given the infection’s long asymptomatic phase, however, the disease didn’t begin to show up in these transfusion patients until the sixties, and it took scientists until the mid-seventies to discover that this particular liver infection was a third strain of hepatitis, or a non-A, non-B hepatitis. (There are now six kinds of hepatitis: hep A, the most common strain, a fast-acting, food-borne or waterborne germ that can cause fatigue, jaundice, and nausea but that clears the system in a few weeks; hep B, a more virulent, blood-borne bug that it can take up to six months to recover from; hep C; and heps D, E, and G—D and G are blood-borne and cause chronic liver damage, E is waterborne, with minor, flulike symptoms—all of which are rare in the U.S. The first two types have vaccines; the other four do not.)
One might think that the lessons of the ongoing AIDS epidemic would have prompted public health officials to seriously monitor this other doomsday virus, but precisely because the public health establishment was so preoccupied with AIDS, hep C quietly gathered dust in the “in” box. It wasn’t until the late eighties that a reliable blood-screening test for hep C was perfected and not until 1992 that it was implemented to purify the nation’s blood supply. And though the test proved marvelously effective, practically eliminating hep C infections caused by transfusions, for some reason public health officials couldn’t decide what to do about the thousands of blood recipients like Doug Bedell who had had transfusions before the blood supply was screened. A Food and Drug Administration advisory panel confabbed on the matter, as did the American Association of Blood Banks, but neither could decide whether or how to track down and inform members of this unfortunate populace. The “look back” process—identifying which blood and blood-product recipients were likely to have received hep C—tainted blood during hospital stays before 1992—would be expensive, time-consuming, and inexact. Donors who subsequently tested positive for hep C would have to be matched with earlier recipients of their blood, but blood banks and hospitals tend to have reliable records only back to 1988. Besides, since only an estimated 7 percent of the infections came from transfusions, and this particular strain of hepatitis had no cure, why unnecessarily alarm people who probably weren’t suffering anyway?
The problem was, while the screening test had helped to reduce the overall rate of new infections, more and more previously infected people like Doug were turning up sick with the disease. So last year the Department of Health and Human Services ordered blood banks to proceed with a look-back process. This past summer letters started going out to some 60,000 individuals who might have received hep C—tainted blood via transfusions during operations performed between 1988 and 1992 (more than 200,000 such blood recipients had died in the intervening years for reasons unrelated to hep C). But that mailing is going to snag only some of the transfusion victims (it won’t get Doug, for example), and none of those who contracted hep C via so-called lifestyle choices, otherwise known as drugs and sex.
“If you were simply alive during the seventies, you could be at risk,” quips Austin entertainment manager-promoter T. J. McFarland, who has known of his chronic hep C infection since 1993. McFarland, 51, has traced his infection to a tattoo he got when he was 22 years old. “I remembered that the guy who gave it to me had bright yellow eyes,” he says.
Twenty-one-year-old Daniel Gullahorn is sure he has had hep C since birth: Because of pregnancy and delivery problems, his blood had to be completely replaced several times shortly after he was born, and he had to have many transfusions as well. “Given that it was 1977, and long before the screening test, that pretty much had to be it,” he says.
Gullahorn was first diagnosed with the infection at age fifteen. After giving blood before undergoing a back operation, he received a letter informing him that the blood had tested positive for hep C antibodies. Follow-up testing, however, indicated that the initial test had been a false positive.
Gullahorn was relieved—until, after donating blood again at age seventeen, he got another letter: “I remember one of my coaches asked how I was doing, and I told him about the hep C, and he said, ‘Stay away from me.’ It was an awakening.”
Gullahorn continues to be amazed at how elusive hep C is. It’s hard enough to discover that you have it, he says, and often harder still to figure out how you got it. “Then you have no simple way of knowing how advanced it might be,” he says. “I had liver tests a month ago, but how do I know that the virus is not kicking in right now and my enzymes aren’t shooting through the roof?” Like a lot of hep C sufferers, Gullahorn has already had one liver biopsy and plans to have another soon. “With hep C,” he says, “you learn real fast that you’ve got to take matters into your own hands.”
Like AIDS patients, people with hep C have not been content to sit idly by until someone in a white coat says he knows something. Hep C Web sites and support groups have burgeoned almost as rapidly as the number of cases. Gullahorn and his father, Jack, a managing director of the Austin public relations firm Public Strategies, have started the Texas Hep C Connection (512-432-1787; www.hepc.org), an information clearinghouse on the disease that is part of a national network headquartered in Denver (800-522-4372; www.hepc-connection.org). T. J. McFarland has taken it upon himself to seek out herbal treatments for the disease, such as milk thistle, which is believed to promote the growth of healthy new liver cells. And Doug, a computer aficionado, has found comfort and valuable information on hep C while surfing the Internet. Some doctors, like Joseph Galati, however, worry that such patient activism will increase the amount of misinformation out there.
Maybe so, but hep C victims aren’t about to ignore the lessons of AIDS, one of which is that the squeaky wheel always gets greased. Given that government expenditures on hep C are a measly $6 per infected person—compared with $1,600 per AIDS patient—heppers realize they need to generate as much buzz as possible to get noticed. “There’s a lot of debate about who should be our front man,” Doug says, naming celebrities infected with hep C: “Evel Knievel, Naomi Judd, David Crosby?”
Doug tried interferon early this year, but it didn’t work as well as he had hoped and he has since switched to the Schering-Plough cocktail. He says his liver-enzyme activity has returned to normal, though other testing shows that the virus is still alive and well in his blood. After a similar failure with interferon back in 1994, McFarland is considering the cocktail, but in the meantime he’s sticking with large daily dosages of milk thistle, vitamins, and springwater. “I really do think a lot of this is just how well you take care of yourself,” he says. Daniel Gullahorn couldn’t agree more: “Until my testing shows I have damage to the liver or they come up with medication that doesn’t make you sicker than you already are, I’m going to stick with clean living.” He suggests that anyone who can identify a risk factor in his medical history (IV drug use, a transfusion before 1992) or has elevated liver enzymes on a standard blood test should ask his doctor to perform a hep C screening test.
Joseph Galati believes that as patients become better educated, so should primary-care physicians. “This is not like someone who walks in and you see they have elevated blood pressure and so you prescribe antihypertensives and tell them to exercise more,” he says. “When liver enzymes show up elevated, it can mean something or not much. So unless doctors begin asking patients about at-risk behavior for hep C when they see those elevated levels, someone could go on for years suffering serious liver damage and not ever know that he’s sick until it’s too late. Hep C can be easy to miss.”
Even for those who know they have it, hep C remains a disease that is too easily forgotten or ignored, despite its current high profile. As Doug Bedell says, “It’s hard sometimes to psych up for the struggle, you know, when you really don’t feel bad.”