Behind the numbers

Needle-exchange activists cite the increasing number of hepatitis cases in their push to override City Hall. And the stats for IV-drug users make their point.

by Kristen Lombardi

It could easily be the most devastating moment in Mike's life. Eight years ago, the 40-ish father of four went to his doctor for what he believed would be a routine examination -- only to find he'd been infected for almost two decades with the gravest of liver diseases, hepatitis C. "I really thought that was the ballgame," Mike recalls, "that I was living on borrowed time."

But while he's managed to remain active and upbeat, hepatitis C has slowly taken hold of him. There are the promising treatments that end in letdowns, and the nagging side effects -- hair loss, interrupted sleep, unrelenting fatigue. There is the dreaded news of fellow patients needing liver transplants, even dying.

And for Mike (not his real name), there are the taxing "thoughts that come with this. Not knowing if the virus is going to strike me good today," he says. "Living with the disease is a constant struggle."

His battle is hardly unusual. For Mike is one of what appears to be a growing number of Worcester residents infected with hepatitis -- a host of classified viruses that attack the liver and are spread through contaminated blood, sex, and dirty needles. A recent city report shows local hepatitis C cases have jumped from 51 in 1994 to 89 in 1998, with 524 total in those years. Meanwhile, local hepatitis B cases have grown from 35 in '94 to 106 in '98, with 359 in all. At first glance, at least, the city's hepatitis statistics, which peaked in the '80s, look to be skyrocketing once again.

For months now, HIV/AIDS activists in Worcester have invoked these same statistics, citing them as an ominous sign of an ongoing public-health threat. The majority of drug-related HIV cases, in fact, are patients co-infected with hepatitis C, which is a fast-growing, yet largely hidden epidemic. "There isn't a patient of mine who stuck a needle in his arm and doesn't have hepatitis C," claims Erik Garcia, medical director of the Worcester-based Homeless Outreach and Advocacy Project and a vocal HIV/AIDS activist.

Which is why this Tuesday, November 30, on the eve of World AIDS Day 1999, Garcia and colleagues joined advocates from across the state -- many of them health-care providers -- calling for Massachusetts Gov. Paul Cellucci to declare a public-health emergency. The 50 or so activists then hand-delivered a petition signed by 570 doctors, nurses, and health-care providers to Cellucci's office. If Cellucci were to make such a declaration, it would allow for expanded access to sterile syringes through the creation of needle-exchange programs in cities, like Worcester, hardest hit by drug-related HIV and hepatitis B and C. It would, in effect, override the city council's continued opposition to establishing needle exchange here.

"Local politics and local public opinion have overwhelmed a public-health issue," Garcia told supporters at the press conference in front of the Statehouse. "I see my patients needlessly infected with deadly diseases simply because of [political rhetoric]."

Though Worcester health officials have long supported needle exchange, and they agree that such a program would greatly reduce the spread of HIV and hepatitis B and C, they don't see hepatitis as an outbreak mandating an urgent, swift response. If anything, they say the increase in local hepatitis cases reflects improved screening of high-risk groups for the blood-borne viruses.

As Arnold Gurwitz, the city's public-health commissioner, explains, "We in the health department aren't overly concerned [about] new epidemics of hepatitis B and C in the community."

Worcester has a long, familiar history with hepatitis -- a history dating back to 1969, when the city's health officials detected an outbreak among Holy Cross football players. At the time, hepatitis A, spread through contaminated water, devastated the 97-strong squad, including players and coaches. Members became so sick with jaundice, nausea, and fever the team canceled its season.

Years later, in 1983, the blood-borne virus hepatitis B ravaged the city at an unusual, alarming pace, sparking a three-year epidemic of 1300 cases. Eleven residents died, contributing to a death rate that raged 6.5 times greater than the national rate. The outbreak not only earned Worcester the distinction of being dubbed the hepatitis B capital of the US, but also prompted doctors from the federal Centers for Disease Control and Prevention (CDC) to investigate. Scientists ultimately discovered the rash of cases stemmed from a deadly, mysterious strain, caused by an interaction of hepatitis B and a sister virus, hepatitis D.

The '80s hepatitis scare, however severe, was largely confined to injection-drug users and their sex partners; and so, officials set up immunization clinics at drug-treatment facilities, shelters, and halfway houses. They even administered what was then a rare vaccine to relatives of newly infected residents. Some 1000 doses of hepatitis B vaccine were distributed -- enough to control the infection. "By creating a large number of immune people," explains Leonard Morse, the city's former public-health commissioner and a key figure in the outbreak, "we decreased chance of the virus spreading."

Today, though, a closer look at the city's hepatitis B and C statistics doesn't reveal a new epidemic, per se. For local officials track two types of hepatitis cases: "acute" and "chronic." Acute is defined as those patients who develop symptoms right after being exposed to either hepatitis B or C, whereas chronic is those who contract the infection and become disease carriers, rather than become sick. Although carriers can spread hepatitis and are of concern, officials monitor annual numbers of acute infections, or the incidence rate, for possible outbreaks. And what officials say they're seeing are more carriers, not more new infections.

Separate the city's acute from chronic cases, and local hepatitis B statistics look in line with state and national trends. The Massachusetts Department of Public Health (DPH) shows that Worcester had 23 total acute cases from 1994 to 1998, with 18 in '94 and only one last year. Simultaneously, the city's seen a considerable rise in chronic cases, from 38 in '94 to 76 in '98, with 228 total. Likewise, acute hepatitis B has decreased across the state from 192 cases in '94 to 80 in '98, while chronic hepatitis B has increased from 1295 to 1326 cases. Nationwide, there's been a steady, 55 percent drop in new hepatitis B infections (140,000 to 320,000 acute cases each year) since '85, yet an estimated 1.25 million people are chronic carriers.

The same might be said of local hepatitis C statistics. Ever since testing for hepatitis C was introduced in 1991, the state DPH has registered thousands of reported cases. But since the current test -- an antibody test -- isn't sophisticated enough to distinguish between acute and chronic, officials cannot determine the annual hepatitis C incidence rate. "Without better surveillance the numbers are suspect," says Bela Matyas, medical director of the state DPH epidemiology division. (The state DPH doesn't release hepatitis C statistics.) Still, he adds, "We suspect not a lot of these reported cases are new infections."

That's because nationally there is a virtual explosion of reported hepatitis C cases; the CDC estimates as many as 3.9 million people have been infected with the virus. At the same time, though, annual occurrence of hepatitis C has decreased across the country since '86, from 160,000 to 80,000 cases per year -- much like hepatitis B.

What health officials attribute the spike in local hepatitis B and C numbers to is what they call "reporting artifact." In other words, the rise reflects more testing and documenting among health-care providers. Heightened awareness in the medical community, for instance, has prompted providers to alter medical practice so high-risk patients like intravenous-drug users are regularly screened. Now that people often switch physicians, city statistics even include duplicates.

Considering this, Gurwitz says, "We are not concerned, though it looks like statistics are going up." Especially, he adds, since the city's HIV/Hepatitis B Program, which grew out of the '80s outbreak, hasn't shown a growth in new infections.

That acute cases of hepatitis B, in particular, have declined while chronic ones have climbed makes sense. Gurwitz and his state counterparts expect the new-infections rate to keep decreasing because, as required, newborns and school children up to age 18 are now immunized. The hepatitis B vaccine is considered highly safe and effective by doctors; in theory, it could wipe out the virus altogether. Indeed, most new cases occur among adults who've never been vaccinated.

But hepatitis B remains a disease of serious proportions worldwide, specially in such areas as China, Southeast Asia, and Japan, where up to 15 percent of the population carries the virus. Which is why DPH officials across the state now routinely screen immigrants for communicable diseases. As elsewhere, the city's mounting chronic hepatitis B cases -- almost half -- tend to reflect migration patterns.

Tam Le, coordinator of the Southeast Asian Health Program at the Worcester-based Family Health Center, says the decade-long influx of some 7000 Vietnamese, Cambodian, and Laotian immigrants here has brought with it a high rate of hepatitis B. "Clearly," he recognizes, "hepatitis B is a major issue for the Southeast Asian population." His program provides outreach and health education to new immigrants, and thus has screened over 1100 clients for hepatitis B. Of those, nine percent turned out to be infected, typically chronic carriers.

It's a high figure, no doubt, since merely four percent of Americans, in general, are infected. Such a disparity stems from the fact that hepatitis B is endemic to Southeast Asia. Scores of people are exposed to the virus because they're less likely to discuss safe-sex methods, for example, and are more likely to share food and drink. In addition, infants can catch the infection from their mothers at birth; 90 percent of kids, as opposed to five percent of adults, end up carriers for life.

Since hepatitis B cannot be casually transmitted, Le and colleagues concur that high rates among the city's Southeast Asians don't pose a public-health threat to the community-at-large. First, the Southeast Asian Health Program has found no hepatitis C cases, indicating a low rate of IV-drug use among these immigrants. Second, the community has remained rather isolated from the general public.

"The image of United States as a melting pot isn't so accurate," Le says. "These immigrants are very tight-knit and hepatitis B has stayed in their community."

If officials expect higher chronic hepatitis B statistics, they practically guarantee rising hepatitis C numbers. For the existing test alone has fueled such a trend, as well as greater screening. Take a Red Cross program that contacts people who had blood transfusions before '92 (when the supply wasn't clean) and reminds them to get tested. And statewide HIV/Hepatitis B programs, which target high-risk groups in prisons and in drug rehabilitation. "This is an outbreak of recognition," Matyas clarifies, "not of newly infected people."

Medical experts like Herbert Bonkovsky agree. Bonkovsky treats many of the 500 hepatitis C patients at UMass Medical Center's liver clinic -- patients who are considered carriers and who probably caught the virus during outbreaks in the '60s and '70s through blood transfusions, IV-drug use, and, for a minority, through sexual contact. "These people didn't show symptoms so they didn't know they had the disease," he says. Instead, most, like Mike, discovered decades later, when an abnormally high level of liver enzymes was detected during check-ups. "This is why," Bonkovsky adds, "we call hepatitis C the silent epidemic."

But all this isn't to say that ongoing transmission of hepatitis C, along with hepatitis B, doesn't happen. Right now, in fact, the main reason for contracting either virus is shared, dirty needles. Not only are IV-drug users hard to immunize (three shots must be administered in six months), but inexperienced, young addicts -- the very ones most at-risk -- continue to enter the drug world.

Perhaps this explains why Worcester rivals other Massachusetts cities with significant IV-drug using populations in acute hepatitis B cases. Remember that Worcester had 23 total new infections from '94 to '98, as compared to 36 acute cases in New Bedford, 30 in Lowell, and 25 in Springfield. For officials like Matyas, the data proves "we need to put more effort into prevention for this high-risk group."

Especially, it seems, when it comes to hepatitis C. More and more medical experts now view the virus as the chief public-health concern. After all, it's considered most severe, leaving 85 percent with an incurable infection that leads to cirrhosis and liver cancer. Unlike hepatitis B, there is no vaccine and largely ineffective treatment; indeed, only one in four patients have long-term success with available drug therapies. Then, of course, today's cases are sure to progress, thereby boosting future demand for costly medical intervention.

"It's clear that the major liver disease of the next century will be hepatitis C," Bonkovsky predicts. "It's already the number-one reason for liver transplants."

The disease is of such concern that the state DPH just set up a hepatitis C advisory task force, consisting of 24 epidemiologists, health-care providers, and HIV/AIDS workers from across the state. The fledgling group, which has met twice, intends to raise awareness, revamp the current surveillance system, and improve testing methods for high-risk groups -- namely, IV-drug users.

HIV/AIDS activists have taken matters into their own hands as well. Because statistics show 90 percent of IV-drug users are "chronically infected" with hepatitis C, and because most hepatitis B/C patients also have HIV, activists included the viruses in their November 30 appeal. After handing over the petition, activists are now waiting for Cellucci's response. Many anticipate the governor will pass the issue on to state DPH Commissioner Howard Koh, who, in turn, would decide where to establish needle-exchange programs. And if that happens, it may prove to be activists' most fruitful attempt to bring needle exchange to Worcester, where councilors have twice vetoed proposals. Such a program, of course, would greatly curb transmission of hepatitis here, too.

"Hepatitis B and C are huge, huge problems and we need to do everything we can to stop the spread," says Garcia, a key advocate behind the petition. To say otherwise, he adds, "downplays significance of [the diseases] and makes them non-issues."

If Worcester's health officials seem to minimize the state of hepatitis B and C among the general public, they cannot disagree with activists over needle-users. Even Gurwitz admits "the [hepatitis] problem hasn't waned much among IV-drug users. . . . There is probably some increase among that population [as well]."

Kristen Lombardi can be reached at

klombardi[a]phx.com..