Hepatitis C Growing chorus of concern over the ‘silent’ epidemic

Carl T. Hall, Chronicle Science Writer

Friday, August 7, 1998

Nearly 25 years have passed since Paul McVetty, now 44, roamed the streets of San Francisco, shooting drugs, sharing needles, embracing havoc with fellow runaways.

McVetty hit bottom, got clean, got married, launched a career in the gourmet coffee business and moved to Marin County. The wild times, it seemed, had left no scars.

Until now.

McVetty is in the final stages of liver disease, a victim of the quiet rampage of hepatitis C: a devilish blood-borne virus that infects an estimated 4 million people nationwide—four times the number of Americans infected with the AIDS virus.

Although hepatitis C is hardly as fearsome a killer as HIV, it cuts a much broader swath. Intravenous drug users are its primary victims, but it has also hit such celebrities as singer Naomi Judd and actor Larry Hagman. Baseball great Mickey Mantle died of cancer after liver failure attributed to both alcohol and Hepatitis C Virus, as it is known.

So quietly does the virus take its toll, it has long been called "the silent epidemic." But the number of deaths from Hepatitis C Virus is expected to triple within the next 10 years. And as the death count rises, so have the voices of people like McVetty, one among thousands of recent recruits in a swelling grassroots movement. The volume can only increase:

• One in every 65 Americans harbors Hepatitis C Virus, which is spread through contact with infected blood. Hepatitis C is the No. 1 cause of liver failure leading to transplant; it is also a significant factor in liver cancer and big trouble for those also infected with HIV or the other hepatitis viruses, A and B.
• Officials in charge of the nation’s blood supply have been sending alerts this year to some of the 300,000 Americans who may have received Hepatitis C Virus-tainted blood transfusions before 1992, when the first effective screens against the virus were implemented.
• At least one class action lawsuit is in the works amid complaints that the blood supply warnings should have been sounded years ago.
• Hepatitis C Virus-related legislation has been introduced everywhere from Washington, D.C., to state capitols and city halls—including Sacramento and San Francisco. Measures typically call for more government-led research and public education, but big money has not been forthcoming.
• Although Hepatitis C Virus infections can be treated, drugs are expensive, difficult to take and help fewer than half of all patients.
• There’s no cure in sight.

"It’s a very dangerous virus," said state Senator Richard Polanco, D-Los Angeles, sponsor of a California measure, SB 694, that would direct state health officials to set up Hepatitis C Virus-education programs. Against this backdrop, doctors are reeling from an onslaught of public concern, which they say has been veering dangerously close to panic in recent months.

"It’s unbelievable," said Dr. Teresa Wright, chief of gastroenterology at the San Francisco Veterans Affairs Medical Center, where a large number of patients test positive for Hepatitis C Virus. "I feel as if there’s a tsunami wave about to land on my head."

One expert, Dr. Leonard Seeff, senior scientist at the National Institutes of Health in Bethesda, Md., is calling for a step back from "mass hysteria."

"I don’t believe for one moment that this is a benign disease," Seeff said. "But my concern is, we are going to provoke an enormous amount of potentially unwarranted anxiety."

Many organizers in the hepatitis C movement agree. "We don’t need hype," said Ron Duffy, 46, a substance-abuse counselor in Oakland who contracted Hepatitis C Virus from a 1972 transfusion while serving in Vietnam, and who now needs a liver transplant.

What activists say they do need, however, is troop strength. And they’re getting it.

"People are finally waking up," said Brian D. Klein, 40, an Hepatitis C Virus carrier helping to organize the fledgling Hepatitis C Action and Advocacy Coalition, a group based in San Francisco and inspired by the success of AIDS organizations such as ACT UP. The group plans to protest what members call price-gouging by the pharmaceutical industry.

In California alone, at least 40 patient-advocacy and support groups have sprung up in recent years; group leaders hope to forge a statewide coalition. Duffy, who in 1995 founded the Hepatitis C Virus Global Foundation in Oakland, expects to draw about 1,000 people to a hepatitis C conference August 23-25 at the Oakland Marriott City Center.

By all accounts, the state, with about half a million Hepatitis C Virus carriers, is at the forefront of the grassroots response to the disease. "It’s the next big epidemic," said Bill Remak, a recent liver- transplant recipient and coordinator of a Marin County support group sponsored by the American Liver Foundation. "Every month, it seems a new support group is starting up somewhere."

For years, hepatitis C did not even have a name. It was known only as "non-A, non-B" hepatitis until the late 1980s, when scientists at Chiron Corp., in Emeryville, and the Centers for Disease Control and Prevention in Atlanta managed to clone the virus.

Detectable only through antibody and genetic tests, "hepC" was discovered to be a fast-changing "survival machine," as one researcher called it. Some people’s immune systems kill the virus. But an estimated 85 percent of those exposed to Hepatitis C Virus become chronically infected—almost invariably from a contaminated needle or long ago blood transfusion. Over a 20-year period, about 20 percent of the chronically infected develop cirrhosis, scarring of the liver that can lead to liver failure. A smaller number, perhaps 1 to 2 percent of those infected, develop liver cancer. The rest die of something unrelated.

People can contract Hepatitis C Virus from microscopic flecks of blood left on a communal straw used for snorting cocaine. The virus can linger on razors and toothbrushes.

It’s been found in small quantities in semen and other body fluids besides blood, although most researchers say it’s difficult to transmit through sexual activity unless there’s blood contact: a possibility from rough sex, anal intercourse or sex during menstruation or herpes outbreaks. The only treatments available are the drug interferon, which often has debilitating side effects, and an anti-viral called ribavirin, recently approved for use in combination with interferon. The treatments are costly—at least $700 a month for interferon alone, and up to $1,440 a month for the combination. Treatments often manage to quell the virus, but it returns in the majority of patients. The overall success rate for the new state-of-the-art combination therapy, marketed by Schering-Plough Corp., under the brand name Rebetron, is only about 45 percent.

Nor is there any vaccine for hepatitis C, as there is for the other main viral culprits in liver disease, hepatitis A and B. Chiron scientists are in the early stages of testing one vaccine candidate, but Michael Houghton, the company’s top Hepatitis C Virus expert, and one of the discoverers of the virus, cautioned against getting hopes too high.

In the meantime, most carriers are not aware they harbor the virus: symptoms typically do not appear for years, even decades, while the microbe quietly destroys the liver.

It is this insidiousness—and the vast numbers of people carrying Hepatitis C Virus --that has health experts concerned.

Up to 90 percent of intravenous drug users, for example, test positive for the virus. Hepatitis C Virus infects close to half of the California state prison population. The chance of contracting it from a single accidental needle-stick is as high as 1 in 10, far worse odds than contracting HIV, making it one of the biggest occupational threats faced by health-care and emergency workers.

In San Francisco, the AIDS virus is still a worse health problem by far. It infects about twice as many people as the 13,000 estimated to carry Hepatitis C Virus. But deaths from hepatitis C are rising while AIDS deaths are in decline throughout the United States. Coinfections are increasingly common. "These are both health crises, and Hepatitis C Virus is now becoming a major public health threat," said Supervisor Gavin Newsom, sponsor of a San Francisco resolution that directs local public-health officials to devise a plan to deal with the growing crisis. "We need to be much more aggressive in reaching out to people who might be affected," Newsom said. That sentiment was also expressed by former Surgeon General C. Everett Koop, who during recent congressional testimony warned of a surge in liver disease for which the medical establishment is woefully unprepared. "We are at the edge of a very significant public health challenge," said Koop, who called for a high-profile public-education effort and coordinated federal attack. The response so far has been disappointing, activists say. Leaders of frontline organizations like the American Liver Foundation are lobbying for a $56 million increase this year in the $46 million National Institutes of Health budget for hepatitis A, B and C research. Other organizers are directing their energies at persuading more people likely to carry the virus to get tested for Hepatitis C Virus, both to limit spread of the disease and improve their chances with drug treatments, ineffective though they may be.

If they hadn’t been pressured, meanwhile, federal authorities might never have started the "lookback" study, in which local blood banks around the country are digging through donor records and attempting to notify anyone who might have received tainted blood in long-ago transfusions. The effort marks the first time authorities have gone out looking for those who may be infected.

Blood Centers of the Pacific in San Francisco, for example, which provides blood to 35 hospitals in Northern California, was able to identify about 400 possibly contaminated units of blood.

Dr. Nora Hirschler, the blood bank’s medical director, defends the seemingly long time it took health authorities to send out the notices. For one thing, she said, it was not clear that much could be done, since there are no surefire treatments for the disease.

"Before you embark on something like this, you need to be sure you can do something to help people," she said.

Such rationales do not wash with those warring in the trenches. "People should have been notified long ago that they may be a walking time bomb," said Carol Craig, an Orange County organizer who believes she became infected with Hepatitis C Virus while working as a medical assistant. She noted that virus carriers may be unwittingly infecting members of their family by such innocuous behavior as sharing razors with teenage children or having sex during menstrual periods, although statistics suggest the risk of household transmission is not very high.

"It’s hard to be urgent without being shrill, but right now we need to make a strong and urgent point about this disease," she said. For many years, Hepatitis C Virus inspired little urgency. The disease moved too slowly. It did damage too discretely. It affected too wide a populace: People who did not easily coalesce into a social movement. By comparison, contracting HIV was almost immediately seen as a virtual death sentence. Healthy young people became wasted shells. The disease devastated a politically active gay community.

Now, the Hepatitis C Virus picture is similarly finding focus. A vast group of carriers contracted the virus in the freewheeling ‘60s and early ‘70s, when it was unknown and the culture fostered high-risk behavior. "Those are the people now beginning to get ill," said Alan P. Brownstein, president of the American Liver Foundation. "Those are the people dying, and given the vast reservoir of carriers, more and more people are going to die unless something is done now."

Which is why so many people, from still-healthy carriers to those near death, are joining the Hepatitis C Virus movement. Like McVetty, who four years ago began reeling from depression and fatigue that his doctors could not explain, they now know what they have: a war on their hands. "We need to get out there and fight," said Alan Franciscus, 49, a leader of the HepC Support Project in San Francisco. "Because nothing’s going to happen if we don’t."