When Dr. Douglas Dieterich was completing his residency in internal medicine at Bellevue, in 1981, something happened that would portend the future of his own career: One of his co-workers, a nurse on his floor, died of complications of hepatitis after she accidentally stuck herself with a contaminated needle. For Dieterich, the death was a tragedy, but an anomalous one. He had no idea then that within a decade, hepatitis C would become a personal crusade, one that would place him at odds with many of his colleagues.
When Dieterich started his practice, hepatitis C was still an unidentified “street disease” largely confined to heroin addicts who shared intravenous needles. But in the early eighties, Dieterich, who treated a large number of aids patients, began to see hepatitis C – one of the more virulent opportunistic diseases that targeted immune-compromised people – crop up more frequently. Eventually, Dieterich says, more of his HIV-positive patients were dying from hepatitis-related liver disease than were dying of aids.
Even then, almost all of Dieterich’s hepatitis C patients were intravenous drug users, many of them from racial and sexual minorities. By 1989, however, his caseload began to include a significant number of upper-middle-class professionals, many of whom insisted they had no obvious risk factors for the disease. “I was suddenly seeing a lot of little old ladies who had undergone transfusions, people who had done drugs just once or twice decades ago and had no idea they were infected. Now, after years of slowly, often silently, progressive disease, their livers were failing.”
Even more disturbing, he says, he began to see a small but growing number of men and women who almost certainly contracted the disease sexually, since they had no other risk factors. “That’s when I decided to pull the alarm.”
A mild-mannered 48-year-old family man who commutes to his East 37th Street office from Long Island, Dieterich is an unlikely medical rabble-rouser; the walls of his office are lined with impressive Establishment credentials: chief of gastroenterology/hepatology at Cabrini, chairman of the HIV Independent Physicians Association, chief of the New York chapter of the scientific-advisory committee of the American Liver Foundation.
But Dieterich says he became increasingly angered at his colleagues’ lackluster response to the rising incidence of hepatitis C cases, and especially by their failure to endorse more-widespread testing for the virus. “It’s apparent to me that we have the makings of a crisis here that is in some ways like the aids crisis in its early days,” he says. “The fact is, the magnitude of this disease is a lot larger than the medical Establishment is letting on.”
Not surprisingly, the early medical and media response to HIV – or the lack of it – haunts the current debate over hepatitis C. Like aids in the eighties, “hepatitis C is … almost a stealth disease for many medical practitioners,” reported the British medical journal The Lancet in a recent issue. “Tracking the incidence of HCV is nearly impossible… . Symptoms are lacking or nonspecific in at least 80 percent of newly infected patients, chronic liver disease develops insidiously and takes decades to present.” In the U.S., the conservative estimates are that there are now 4 million people infected with the virus. “Two percent of the adult population here is infected,” says Dieterich. “Worldwide, the numbers infected are probably more than four times that of HIV.”
While hepatitis C has been on the radar screen since the early eighties, the medical community is still deeply divided over how much public money and effort should be marshaled for ambitious testing and education programs. The central issue is whether hepatitis C should be considered a sexually transmitted disease. While it’s agreed that it is transmitted at a lower rate than viruses like HIV or even hepatitis B, there is growing sentiment that it can be passed between sexual partners, especially among gay men.
Not everyone agrees. In recent months, a string of articles has downplayed the magnitude of the threat posed by hepatitis, pointing out that the number of new cases in the U.S. has plummeted and that, Dieterich’s experience to the contrary, most new cases are still primarily confined to traditional risk groups.
Reported new cases of hepatitis C in this country have dropped annually, from a high of 230,000 in the eighties to 36,000 in 1996. But the decline, which reflects a reduction in transfusion-related cases that came about after blood banks began routinely screening for hepatitis C in 1992, masks the existing large number of chronic cases, Dieterich argues. Moreover, he charges, CDC statistics widely underestimate the impact of the epidemic in urban centers like New York City.
Dieterich believes that the long gestation period of the hepatitis C virus has helped obscure a new epidemic among people who experimented with drugs and sex during the sixties and seventies. Typically, hepatitis C may cause so low-grade an infection that it remains undetected for years, even decades, before it is finally diagnosed. Nearly 85 percent of those who contract the disease develop chronic infection, and up to 60 percent of those in turn develop chronic liver disease. Many patients have already incurred major, often end-stage, liver disease, such as cancer or cirrhosis, before they even realize they have been infected.
At present, the virus is responsible for 8,000 to 10,000 deaths per year in the U.S., a figure expected to triple or even quadruple in the next ten to twenty years. Liver failure due to hepatitis C is now the No. 1 cause of liver transplants in the U.S. As tens of thousands of currently infected patients advance to cirrhosis and liver failure early in the next century, a study headed by Dr. Jay Hoofnagle, director of the Division of Digestive Diseases and Nutrition at the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), predicts a quadrupling of patients with liver disease – and nearly as many “liver-related deaths” – around the year 2018, along with a nearly eightfold increase in requests for liver transplants.
Last week, a study in The New England Journal of Medicine reported that the incidence of liver cancer in the United States almost doubled in the past decade, an increase the journal blamed primarily on hepatitis C. Dr. Mary Jeanne Kreek, a world-renowned addiction expert, calls hepatitis C “the emergent and preeminent public-health problem of the twenty-first century – surpassing HIV.”
Other doctors maintain that the risks of the epidemic are being wildly overstated. While hepatitis C progresses to chronic liver disease in up to 50 percent of cases, the majority of people infected with the virus show no symptoms for decades. Speaking at a recent symposium at Mount Sinai, Dr. Sharon Stancliffe, a consultant to the New York State Department of Health and the aids Institute, said, “Most of the scientific evidence indicates that the majority of those with hepatitis C will remain well, despite having the illness. We do not want to go around creating panic.”
Given the divergence of medical opinion, it’s not surprising that whether to test patients routinely for the virus has become a particularly divisive issue. While even Dieterich acknowledges that universal testing will be difficult and expensive, he believes that the definition of “high-risk groups” for the disease should be broadened. Everyone agrees that the vast majority of those who contract hepatitis C are heterosexuals with histories of drug abuse. Also at high risk are people who received blood transfusions prior to 1992, at least 50 percent of whom are expected to test positive.
But by most estimates, at least a third of all patients with hepatitis C have no histories of these risk factors at all. Indeed, even the CDC acknowledges that 15 to 20 percent of patients with acute hepatitis C report that their only exposure to the virus was through sexual contact. Given these statistics, some doctors believe that transmission through sexual contact or shared drug paraphernalia is much more common than is thus far believed.
CDC officials acknowledge that hepatitis C can be transmitted sexually. But they insist that the risk of such exposure is very, very low. Unlike aids, which is transmitted in semen and other bodily fluids, hepatitis C is passed solely by blood. As a result, sexual transmission is only possible during high-risk activities like anal sex. But because hepatitis C is more easily transmitted by men than by women, gay and bisexual men and sexually active females with multiple partners are probably at much higher risk of sexual transmission. One dangerous result of recent advances against HIV is a well-documented drop in safe-sex practices. Decreased vigilance puts many at risk not just for HIV but for hepatitis as well.
At the December national gathering on hepatitis C, the CDC’s own Ian Williams, an epidemiologist, presented evidence to suggest not only that sexual transmission of hepatitis C is greater than previously thought, but that men 30 to 50 years old are infected at more than twice the rate of other age groups.
Dr. Miriam Alter, chief of epidemiology of the hepatitis branch of the CDC, isn’t so sure about Dieterich’s other area of concern: people who share inhalation paraphernalia to ingest drugs like cocaine, crystal meth, and Special K, all recently on the upswing. While the risk of sharing needles is clear, explains Alter, “there is only one study to date that demonstrates a link between the snorting of drugs and HCV, and it’s not conclusive.” Further studies are needed, she says, before the CDC could urge such a diffuse cohort to be tested routinely.
Dieterich’s response is definitive. “Screening and testing for hepatitis C should be routine everywhere. Certainly for those who have been sexually active with multiple or high-risk partners, or who have engaged in high-risk activities such as unprotected anal intercourse, as well as for those who have shared nasal paraphernalia for snorting drugs.”
The reason Dieterich and his supporters believe testing is so crucial is that there are breakthroughs on the treatment front. “We’ve had more success combating this virus than we ever had before, but it’s important that exposed patients be treated as soon as possible, even if they are asymptomatic,” Dieterich says.
While 15 to 25 percent of hepatitis C patients with liver disease recover without any treatment, up to 40 percent can now be cured with combination therapies. For those infected, there used to be only interferon, an anti-viral drug with painful side effects. Now there is ribavirin, which has shown considerable success when used in tandem with interferon. Coming down the pike are protease and helicase inhibitors, which doctors hope will prove as effective against hepatitis C as they have against HIV.
Some of his colleagues dismiss Dieterich as an alarmist. But if the misguided and overcautious early response to aids taught us anything, it’s that yesterday’s alarmist may turn out to be tomorrow’s visionary.
Lawrence D. Mass, M.D., is a co-founder of the Gay Men’s Health Crisis and the first writer to cover the aids epidemic in any press.