Merrily Anderson was an actuary's dream when her life-insurance policy came up for renewal three years ago. At 50 years old, she had enjoyed good health and a happy marriage all her adult life. There was no illness in her family. Her job was stable, and her lovely twin daughters had just turned 21. When the insurance agent suggested applying for a discounted rate, she supplied urine and blood samples and figured she was a shoo-in. She wasn't. When the agent called back, he said the whole application had been nixed, and suggested she write the company to ask why. Anderson dashed off a note before leaving on a brief vacation with her husband, and the answer was lodged in a stack of mail when they got home. It said, policy denied: hepatitis C.
Hepatitis what? Few of us would know HCV from KFC. Yet this potentially lethal virus is now four times as widespread as HIV, and few of the nation's 3 million to 4 million carriers have any idea they're infected. HCV, or hepatitis C virus, was not even discovered until 1988. And by the time scientists developed tests that could spot the pathogen, it had spread silently for decades. IV drug users were infected by the hundreds of thousands. So were people like Anderson, who received two pints of blood while giving birth in 1977. "Hepatitis C mirrors America," says Alan Brownstein of the American Liver Foundation. "It affects bus drivers, construction workers, even soccer moms."
It's no longer spreading in all those groups. Though IV drug users still infect each other through shared syringes, few of us stand much chance of contracting HCV today, even if we live or sleep with carriers. The blood supply has been safe for the past decade. And unlike the AIDS virus, HCV isn't easily passed from mother to child during delivery or breast-feeding. Yet the epidemic's impact is growing daily, as more and more Americans receive postcards from the past, announcing that their lives are in danger. "I can't go to a social event without meeting someone with hepatitis C," says epidemiologist Miriam Alter of the U.S. Centers for Disease Control and Prevention in Atlanta. People are surely saying the same thing in Los Angeles, where "Baywatch" star Pam Anderson recently announced she is infected, and in Nashville, where country singer Naomi Judd has given hep C a public face. At least a third of the nation's HIV patients carry HCV as well, and either infection can exacerbate the other.
Hepatitis C is not a death sentence. Some 15 percent of infected people mount a strong enough immune response to throw off the virus completely. And though HCV stays active in most infected people, causing chronic liver inflammation, many suffer nothing worse than fatigue and mild depression. Yet roughly one patient in five develops cirrhosis, which can lead to liver failure. The need for transplants is rising as a result, and 10,000 Americans are dying each year. By the end of the decade, that annual toll could reach 30,000--twice the toll that AIDS takes in America each year.
Despite its name, HCV is not related to the viruses that cause hepatitis A and hepatitis B. Though all three microbes cause inflammation (itis) of the liver (hepar), they're genetically distinct and spread by different means. Why has the C virus come to light so recently, and traveled the world so fast? Consider its habitat. Unlike the A virus (which spreads via fecal matter) or the B virus (which passes easily between sex partners), the C virus can't spread unless a carrier's blood enters another person's veins. Until recently, the opportunities for such commingling were limited. But as reusable syringes caught on in the 1940s and '50s, and hospitals began using blood as medicine, the once obscure parasite had a heyday. By the late 1960s, physicians were seeing liver disease in people who didn't have either of the known hepatitis viruses. Lacking a better name for the syndrome, they dubbed it "non-A, non-B" hepatitis.
Roger Dillan remembers hearing the phrase in the 1970s. He had fallen through a glass door as a high-school kid in the 1950s while working at a gas station in San Mateo, Calif., slashing his arm badly enough to require two operations and 13 pints of blood. Two decades later, his own blood was exhibiting high concentrations of an enzyme called ALT, which the liver produces during inflammation. Dillan was thriving in a job at IBM. He felt fine and his doctor didn't seem overly worried, so he got on with his life, marrying three times and fathering five kids over the years. He still felt fine in 1991 when the first HCV tests came out, so he waited until 1996 to check his own status. An antibody test confirmed that he'd been exposed, and a separate test showed that the hep C virus was actively replicating in his blood. But when doctors ran a needle between his ribs to extract and analyze a sample of liver tissue, they found that the infection had caused only minimal scarring. Dillan is now a 63-year-old retiree, living with his dog, cat and third wife in Petaluma, Calif. He suffers occasional bouts of fatigue, indigestion and brain fog, but he is grateful to have fared so well for 46 years. "My doctors tell me I won't die of liver problems," he says. "I'm one of the lucky ones."
Because HCV goes unnoticed for such long periods, the source of a person's infection is often hard to know. But there are several well-known risk factors. Anyone who received a blood transfusion before 1992 could easily have been exposed. The danger was especially high in the 1960s, when blood banks paid donors and screening was lax. HCV infected a third of all transfusion recipients between 1960 and '65, according to Dr. Adrian Di Bisceglie of St. Louis University, and the infection rate is close to 100 percent among hemophiliacs who received clotting factors before the mid-1980s.
Health workers with a history of accidental needle sticks are also at risk. No U.S. clinic would operate today without a secure receptacle for used medical implements, but plastic garbage bags were still the norm when Andi Thomas worked as a medical assistant in the late 1970s. She jabbed herself often during her two years at a multispecialty clinic in Miami Beach. Her ALT levels shot up in 1979, but when antibody tests for hepatitis A and B came back negative, her doctor guessed that social drinking was to blame. Her HCV went undiagnosed until 1996, when another doctor saw her enzyme levels and recommended testing.
Today, thanks to blood screening and other safeguards, the risk of getting hep C is negligible in Western medical settings. But IV drug abuse poses an overwhelming risk. HCV replicates rapidly, reaching high concentrations in the blood of infected people. And because a small amount of blood can harbor a large dose of virus, a nearly sterile syringe can easily spread the infection. The odds of contracting the AIDS virus from a single prick with a tainted needle are less than one in 300, notes Dr. Stuart Ray, an infectious-disease specialist at Johns Hopkins. The odds are 10 times that high if the needle harbors HCV. In Baltimore, where Hopkins researchers have followed IV drug users for the past dozen years, 20 percent are infected with HIV--80 percent with hep C. Most contract HCV within six months of their first encounter with a needle.
It's tempting to dismiss a needleborne epidemic as an underclass phenomenon, pitiable but irrelevant to middle-class life. Hepatitis C discredits that notion every day, as accomplished, upstanding baby boomers discover they've been carrying the virus since the days of the Sex Pistols, or even Jimi Hendrix. When LauRose Felicity got her diagnosis 10 years ago, she was 41 years old and working as an administrator at the University of Louisville Law School. She was also raising two adopted kids and practicing law on the side. Like countless children of the '60s, Felicity had toyed briefly with macrame and IV drugs on her way into adulthood ("I skipped the part where you arrive at heroin through a slow progression," she recalls). Now the unexpected bill was due. Lacking the energy to sustain a lawyer's life, she moved her family to San Francisco. She now teaches third grade and uses herbs and acupuncture to stay on top of her game.
In hindsight, the hazards of shared needles and unscreened blood are obvious. But a substantial proportion of HCV carriers--up to 40 percent by some estimates--don't fall neatly into known risk categories. Are there other dangers that we have yet to fully recognize? Did inoculation programs spread the virus among soldiers in Vietnam? Are tattoo pens spreading it today? Both are reasonable suspicions, but neither has been validated--and despite years of controversy, neither has been disproved.
Military recruits encountered the same hazards as civilians during the 1960s and '70s, and many contracted HCV. A 1999 study found an HCV rate of 6 percent to 8 percent among Vietnam vets at San Francisco's VA hospital--roughly four times the rate in the general population. The numbers are no great surprise; VA patients almost always have more health problems than civilians (or other veterans). But some infected vets deny having any known risk factor. "People falsely assume that hepatitis C is due to poor personal conduct," says Bill Schwartz, a West Point graduate who served two tours in Vietnam and retired as a lieutenant colonel before joining Litton Industries as a marketing executive. Like many infected veterans, Schwartz believes the air guns used to vaccinate GIs in long queues may have spread droplets of blood from one person to another. Dr. Lawrence Deyton, the VA's chief public-health officer, is wary of jumping to such conclusions. "Was it combat wounds? Medical procedures? Use of the inoculation guns?" he asks. "We don't have the data yet. We simply don't know." The hazards of military service should become clearer this summer, when the VA releases a survey comparing HCV rates among veterans of various wars.
Meanwhile health officials and university scientists are pursuing the tattoo question, and drawing opposite conclusions. No one denies that contaminated tattoo needles could spread HCV, or that clean needles could infect people if used with contaminated tubing or ink wells. When Pam Anderson of "Baywatch" fame disclosed her own infection last month, she blamed it on a tattoo she received several years ago in Tahiti. By Anderson's account, she and her husband at that time, Motley Crue drummer Tommy Lee, got branded with the same needle during a seaside vacation, and she got a virus she didn't know he had. Lee denies that he's even a carrier and says he has 1998 jail records to prove it. A fascinating quarrel, to be sure, but the real question in this tattoo-mad age is whether the needles imperil teenagers as well as celebrities.
Dr. Robert Haley, an internist and epidemiologist at the University of Texas Southwestern Medical Center, believes the risk is substantial. In a study published last year, he and a colleague tested 626 people for hepatitis C, then questioned them about different possible risk factors. Drug use was the strongest predictor, but tattoos were in the same league, causing a sixfold increase in risk. And because tattooing was more prevalent than drug use, the researchers concluded that it actually accounts for more cases.
The catch is that other studies support the opposite conclusion. In one CDC survey, researchers questioned patients with acute (newly acquired) hepatitis C and found they were no more likely than other people to sport fresh tattoos. In another study, researchers surveyed 8,000 Texas college kids and found no link between dyed skin and HCV-positive blood tests. "There is no reason for every 25-year-old woman with a butterfly on her shoulder to get tested," says Alter, the CDC epidemiologist. "But people thinking of having their bodies pierced or tattooed should look for the highest standard of infection control. Anything that pierces your skin can transmit a bloodborne infection."
For people who discover they have HCV, the most pressing question is not where it came from but what to do about it. When the virus came to light in 1988 there was no treatment at all. Today there are several drugs on the market, but they're all variations on the same regimen: interferon (a naturally occurring protein used to boost the body's attack on the virus) plus ribavirin (a compound that helps slow viral replication). The combination is curative in some patients and useless in others, depending partly on which strain of the virus they have. But roughly half of all patients respond at least temporarily to the latest versions of the drugs. A 12-month course of treatment can cost $26,000, and the common side effects are so awful that one patient in seven abandons the regimen before finishing it.
Bill Schwartz, the West Point graduate, is among the lucky ones. When he got his diagnosis in 1997, interferon was still being used by itself. The yearlong regimen was "as bad as West Point plebe year and Vietnam combat," he says--and it didn't control his infection. But Schwartz tried again when doctors offered him the new two-drug regimen, and the second treatment took. He now has a virus-free blood test to show for his persistence. Others don't get that far. Consider Ted Huffman, a strapping, 46-year-old firefighter from Euclid, Ohio. When he learned of his HCV infection in 1997, he had spent his career hauling people out of burning buildings. "I was always beat and scratched up and covered with somebody's blood," he says. "The stuff showered off. I never thought it was a big deal. I thought I was tough." But as Huffman puts it, "Interferon kicked my a--."
Huffman was suffering only mild fatigue when he got his diagnosis, and his liver was still in good shape. But tests showed that the virus was replicating wildly in his blood, so his doctor prescribed interferon. Huffman soon found himself flat on his back, too weak to get out of bed and yet incapable of sleeping for days at a time. When he had the strength to get around, he lacked the will. In short, he says, "I was a freakin' psychotic, suicidal mess." He contemplated shooting himself or driving his car into a bridge abutment but managed to stay the course for six months--only to find that it had failed. Today he works as a fire-academy administrator. He may try treatment again if his liver starts to falter, but he swears he'll take his interferon with Prozac.
If Huffman is lucky, interferon will be optional by the time he needs treatment. The market for hep C treatment is now exploding, and drugmakers have several new compounds in the works. At least three companies are developing protease inhibitors that could help suppress HCV just as similar drugs have helped handcuff the AIDS virus. And Schering-Plough, the current leader in hep C treatment, is developing molecules that could be combined with protease inhibitors to create the kind of multidrug cocktail that has proved so effective against HIV. "The parallels between these two [epidemics] are just phenomenal," says the VA's Deyton. "We're today in hepatitis C where we were in HIV 10 years ago, where we had only one or two drugs that were very toxic and not very effective. If a patient's liver is not in trouble, it may be perfectly appropriate to watch and wait for something better to come along."
David Marks has employed that strategy since he learned he was infected four years ago. The former Beach Boy played rhythm guitar on all the group's early classics--"Surfin' Safari," "Surfin' U.S.A.," "Surfer Girl," "Little Deuce Coup"--and later worked as a session musician, recording albums with performers from Warren Zevon to the New Christy Minstrels. He did his share of snorting and shooting during the carefree '70s, and never lost his love of booze or music. The wake-up call came in 1998, when Marks returned from a Beach Boys reunion tour with what felt like a broken rib but turned out to be an inflamed liver. "The doctor gave me six months if I didn't clean up my act," he recalls. "If I did, he said I might hang around for a while."
So Marks hunkered down with his wife in Saratoga Springs, N.Y., and gave up gin for herbal potions. He eats carefully now, and takes a lot of naps. "Yesterday I slept for 14 hours," he says. "My energy level is way low and there's a certain amount of depression. I find myself gazing into space." He worries that treatment would only rob him of the energy to keep up with his projects. He's still making music, and working to start a scholarship fund for the children of hep C patients. And despite his ill health, he still takes pleasure in the effort and in life. "This disease has finally forced me to take care of myself," he says. Millions of us could soon be saying the same thing.