Wake-Up Call Is Sounded on Hepatitis C

Hepatitis C, a potentially deadly disease that has become the nation’s leading cause of liver transplants, silently stalks more than 3 million Americans but remains largely off the radar screen of public health.

Although the disease is believed to infect more than four times as many Americans as the human immunodeficiency virus, it has only recently been targeted by the U.S. Centers for Disease Control and Prevention in a national battle plan. And as yet, no new funds have been allocated to support the effort.

In California, the number of infected people may exceed 600,000, state officials say.

“It is a very big problem and we are doing almost nothing because we have no resources,” said Dr. Jay Rosenberg, public health medical officer for the California Department of Health Services. “We have zero--not a penny of state or federal money--zero.”

Many health officials hope that recent advances in treatment and increased attention at the federal and state levels will infuse energy--and at some point money--into the fight against this blood-borne disease.

“We need to educate people-- physicians, patients, health care workers. We need to make the point that there is . . . hope for more effective [drug] combinations,” said Dr. William G. Hardison, president of the San Diego chapter of the American Liver Foundation.

Many Unaware of Infection

Spread primarily through injection drug use, hepatitis C is a stealthy foe, nearly impossible to track. Some doctors say that up to 90% of the estimated 4 million Americans with the virus don’t know they have it. The risk is not limited to addicts--the virus can be acquired through a onetime experience with injection drugs. It also infected many thousands of transfusion recipients before July 1992, when accurate testing began.

Symptoms can appear 20 years or more after infection; the diagnosis often comes when victims learn they have chronic liver disease, cirrhosis or cancer. Treatment, though getting much better, still fails more often than not. It is also expensive, with potentially severe side-effects. And there is no vaccine.

Some infected people are able to clear hepatitis C from their systems without ill effects, but up to 85% of those who are infected go on to develop chronic infections and can transmit the disease to others. Though most people will not die or become debilitated, about a fifth of those with chronic infections develop cirrhosis within 20 or 30 years. People who are older when infected, or those who drink alcohol, tend to develop more severe liver disease.

Though it accounts for up to 10,000 deaths a year, hepatitis C is less dramatic and deadly than HIV. Hepatitis C is not as readily spread through sex. The blood supply now is relatively safe, and the infection rate has dropped dramatically in the last decade.

Still, hepatitis C is the nation’s most common cause of chronic liver disease. According to one estimate, it will boost the need for liver transplants more than fivefold in the next decade and cause liver-related deaths to double. The CDC estimates the virus’ tab in medical and lost work expenses at $600 million annually.

“It’s a silent killer,” said Betty Perkins, 55, a retired Sacramento school psychologist who contracted the virus 25 years ago from a transfusion. “You don’t have sores all over your face. Most of us look like we’re normal. . . . [But] it’s so hard to get something done. . . . That’s the struggle I have now, trying not to compare myself to who I used to be.”

Although the number of Americans believed to have the disease vastly outnumbers those infected with HIV (estimated at 750,000), some doctors believe that hepatitis C has been overshadowed by AIDS, a scourge that has led to battle fatigue among disease fighters. But other health experts say that without effective prevention or treatment tools--the mainstays of public health--there has been little reason to mobilize.

“If you are going to do something for [patients], then have a rationale for looking for them, but if you are going to say, ‘So long,’ or ‘Go look it up on Internet,’ that’s not very good public health practice,” said Shirley Fannin, disease control director for Los Angeles County.

“Screening should be tied to cure or prevention. Screening just to find out ‘the prevalence is x’ is probably not going to be worthwhile.”

Dispute About Danger

Although acknowledging that hepatitis C is a serious matter for those infected, Fannin and others worry that the threat to the public will be overblown, perhaps draining precious disease-control resources.

An Oct. 7 editorial in the medical journal Lancet lamented the dearth of federal funding for the fight against hepatitis C--but also chastised a drug maker for a U.S. newspaper advertising campaign “designed more to create . . . hysteria than public understanding.”

The Lancet piece accused the Schering Corp., which makes alpha interferon (until recently the only drug approved to treat the disease), of breaching the public trust by implying that anyone who had ever received a tattoo or had a body part pierced should be tested. In reality, the CDC considers tattoos and body piercing an area of “uncertain risk”--a classification that may make millions of people very nervous.

A spokesman for Schering said his company has acted responsibly. “Until these risk factors can be definitely ruled out, we believe it is in the public’s best interest to provide as much information about potential risk factors as possible so that individuals can take the appropriate steps to protect themselves,” said spokesman Bob Consalvo.

For the minority of victims who develop severe complications, the disease--and its treatment--can be miserable and frightening.

Perkins, who started a hepatitis C support group in Sacramento that has grown to 200 members, tried the standard alpha-interferon treatment for six months.

“It was like torture,” she said. Though her liver biopsy showed considerable improvement, the treatment destroyed her thyroid function and brought on depression, fatigue and flu-like symptoms. At some point, Perkins will have to decide whether to try a much more promising combination of drugs with potentially worse side-effects.

Many victims are relatively young people who, years ago, experimented with injection drugs.

One 29-year-old mother of three, who asked not to be identified for fear of jeopardizing her job, believes she was infected 13 years ago when she occasionally used methamphetamine.

“I wish there would be billboards out on the highway about it because no one knows” about this disease, said the woman, who lives in Sacramento.

Many doctors don’t know much either, the woman said. She began seeking medical advice for her fatigue and body aches about four years ago. She learned that her liver enzymes were slightly elevated, but no one suggested a hepatitis C test until this year. Instead, she said, she was told to take iron supplements and ibuprofen, both of which worsened her health.

What haunts her is that she was a blood donor in the early 1990s. She worries that she inadvertently infected someone.

Health authorities in the public and private sectors are trying to educate people at risk without alarming the general population. They don’t want to start an unnecessary and costly screening stampede but do want potentially infected people to get tested, and if appropriate, treated.

Treatment is rapidly improving. A study published this month in the New England Journal of Medicine found that after 48 weeks of treatment with a two-drug combination therapy, 38% of patients had sustained undetectable levels of the virus, compared with 13% of patients who used the standard treatment of alpha-interferon alone.

The combination therapy, which uses alpha-interferon and ribavirin, is approved by the FDA for those who respond to interferon, then relapse. It is expected to be approved soon for first-time treatment.

“It’s important that treatments are becoming available and are offering hope,” said Dr. Karen Lindsay, an associate professor of clinical medicine at USC. “This is a disease that people really can take control of.”

Even without treatment, doctors say, patients benefit from knowing they are infected so they can make appropriate lifestyle changes--especially curbing alcohol intake, which worsens liver damage.

Both the federal and state governments have taken steps toward identifying and reaching risk groups.

* The U.S. Food and Drug Administration is overseeing an effort over the next two years to notify people who received blood transfusions before July 1992 from donors who are now known to be infected with hepatitis C. Of some 300,000 people who fall into that category, between 60,000 and 90,000 are believed to be alive and reachable.

* U.S. Health and Human Services Secretary Donna Shalala has called for a general education campaign about hepatitis C aimed at people who may be at risk and their doctors.

* The California Legislature last session passed a bill launching a hepatitis C education campaign, although Rosenberg says no money was attached.

* The CDC issued a battle plan for hepatitis C last month, recommending that “prevention messages” be targeted at injection drug users, those who engage in high-risk sex and health care workers.

The agency also recommended routine testing for anyone who has ever injected illegal drugs. Other candidates are people who received blood transfusions or organ transplants before July 1992; health care workers subjected to needle-sticks; and children born to women who test positive for hepatitis C.

The trouble is that there are millions of people in the “uncertain need” category. These include patients who received transplanted tissue (such as corneal transplants) or sperm; snorted cocaine with shared paraphernalia; obtained body tattoos or body piercing; had multiple sex partners or sex with someone who had a sexually transmitted disease; and long-term sex partners of people with hepatitis C.

In its editorial last month, the Lancet raised a multimillion-dollar question.

“Given these uncertainties, who would want to be a local health official charged with planning a [hepatitis C] public education campaign and carrying out a comprehensive testing program?” the editorial asked. “Dealing with the ‘worried well’ would alone be enough to break the budget.”

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Facts About Hepatitis C

* Infects about 4 million people in the United States, or 1.8% of the population, most of whom don’t know it.

* Is involved in 40%-60% of chronic liver disease cases, resulting in up to 10,000 deaths a year.

* Often has no symptoms during the first two decades after infection.

* Disproportionately affects people ages 30 to 49.

* Is blood-borne and primarily spread through injection drug use (60% of cases), but is also spread through sexual contact (up to 20%), and through occupational exposure, through hemodialysis or from mother to newborn.

* Is not spread by sneezing, hugging, coughing, breast feeding, through food or water, sharing eating utensils or drinking glasses, or through casual contact.

* Has no vaccine.

Source: U.S. Centers for Disease Control and Prevention