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Hepatitis B: The Breakdown of the Science What is hepatitis?
-H.H

April 24-30, 2003

cover story

Silent Killer

HEALTHY CRY: Dr. Philip Siu is working to keep his 

patients -- like these -- free of hepatitis B.
HEALTHY CRY: Dr. Philip Siu is working to keep his patients -- like these -- free of hepatitis B. Photo By: Michael T. Regan

While SARS is getting all the attention, hepatitis B Is the real health scourge in Chinatown.

The waiting room in the Chinatown Pediatrics office on Ninth Street between Vine and Arch is always crowded. Children play in the middle of the room because there are not enough seats for all the parents and kids. The receptionist and nurses, who staff the check-in desk, are harried and stand over each other with telephone lines crisscrossing. Various dialects of Chinese -- Cantonese, Mandarin, Hakka -- as well as English are being shouted out as patients check in, check out and check for results over the telephone.

Dr. Philip Siu, wearing a white coat and a stethoscope flung around his neck, personally walks with his patients from the examination room to the reception area as he explains to the parents what ails their child. He takes his time with each of the kids as if he has all the time in the world, in spite of the fact there is a whole bunch of other kids waiting for him.

Siu started his practice in Chinatown about eight years ago. Born and raised in Hong Kong, he came to the United States to attend Columbia University. He moved to Philadelphia for medical school at the University of Pennsylvania and stayed on to do a residency at Children’s Hospital. After practicing pediatrics in suburbs like Abington and Norristown, he made a deliberate change to start a private practice, but not in the wealthy suburbs.

An active member of the Chinese Christian Church in Chinatown, Siu wanted to help fellow Chinese Americans in the poorer, urban neighborhoods, where residents need a doctor who speaks their language. Chinese families see Chinatown as a central hub where it’s easy to get around without needing to know a word of English. Chinese doctors, groceries, tax accountants and lawyers can all be found in Chinatown.It was two years ago that Siu received an alarming call, alerting him that one of his patients -- a 15-year-old boy we will call Jay (his parents won’t let City Paper use his real name) -- had been rushed to the emergency room for acute hepatitis B. Siu didn’t know his patient was infected with the virus. Cases like that one prompted Siu to wonder just how many of his clients actually had hepatitis B, the so-called silent Asian epidemic.

   

blumberg news: In his book, The Hunt for a Killer Dr. Baruch Blumberg says the media never developed an interest in the disease.

Photo By Michael T. Regan
 

Obtaining a $5,000 grant from the National Hepatitis B Task Force, Siu conducted a study to see how endemic hepatitis B is among local Chinese-American adolescents, the first study of its kind in Philadelphia. From spring to fall last year, 97 Chinese-American teenagers, between 14 and 18 years old, were screened for hepatitis B and educated about the virus. The results were alarming for the Chinese-American community in Philadelphia: 18 percent of the children in that study were infected with hepatitis B.

This is a much higher percentage than other studies focused on the Asian-American population.

While the SARS pandemic is receiving media coverage around the world, hepatitis B will kill more than one million people this year. Twenty-five percent of chronic hepatitis B carriers will suffer acute hepatitis, cirrhosis of the liver and liver cancer by the time they reach middle age.

Jay has been Siu’s patient since late 1998, but he and his mother failed to tell the physician that Jay found out he had hepatitis B in China, before he moved to America nearly six years ago.

It was an oversight that nearly cost Jay his life. Without proper monitoring, Jay’s liver enzymes can shoot up to dangerous levels. Jay incorrectly believed his hepatitis B would just go away. But that rarely happens. After the first six months of infection, hepatitis B is often there to stay.

Now each time Jay visits Siu, he gets an educational lecture about hepatitis B. "Because it’s a silent disease, [patients] don’t see [hepatitis B] as part of the [ongoing medical] problem," says Siu.

Jay’s pain was so acute when his hepatitis B flared up that he can hardly recall that period at all. He underwent an emergency skinny-needle liver biopsy, a very painful procedure. All he remembers is the anesthesia smelled like strawberry, a flavor he loves in ice cream and candy.

At an age when Jay should be carefree and energetic, he is often fatigued, exhausted from his achy joints and muscle pain. He is the sickest patient of all the kids in the study, with his liver already under attack by the virus.

"It makes me feel it’s unfair," Jay says. "I feel like the sickest boy in the world."Today, there are about 1.25 million chronic hepatitis B carriers in America, resulting in 5,000 deaths a year. The Asian Liver Center estimates that over half of those chronically infected are Asian Americans, many of whom contracted it at birth via infected mothers. While the Asian Liver Center estimates that the hepatitis B infection rate among Asian Americans is 7 percent, the average percentage of hepatitis B carriers of all Americans is only 0.5 percent.

Most people can fight off the hepatitis B infection with natural antibodies. However, 11 percent of those infected will retain the virus in their bodies and become chronic hepatitis B carriers.

For children, the chance of fighting off the viral infection is much more of an uphill battle. The younger they are when they catch it, the more likely they will become chronic hepatitis B carriers.

Globally, hepatitis B is a whole different story. There are 400 million chronic carriers worldwide. Even if the majority of them experience no serious symptoms throughout their lifetimes, 100 million will. In comparison, HIV or AIDS affects 40 million people in the world today.

So why isn’t hepatitis B more publicized?

According to Dr. Baruch Blumberg’s book, The Hunt for a Killer Virus: Hepatitis B, the virus is just not as sexy. "The media never developed much of an interest in hepatitis. ’Popular’ infectious agents (in particular, HIV) were often front-page news and the subject of the evening newscasts, generating opinions, comments and talk-show phone-ins. HBV had a much more modest lifestyle …," observes Blumberg.

Chronic hepatitis B carriers often don’t find out they are ill until they are middle-aged. Their lifestyles don’t necessarily include risky behaviors, such as having multiple sex partners or using drugs.

Another reason for the lack of attention is that Asians "don’t scream loud enough so there is no advocacy for them," explains Siu. This is why places like Jefferson’s CHIC (Chinese Health Information Center) and the Chinatown Pediatrics office are so important for the Philadelphia community.

When Asian Americans United was called to comment on this story, the community activism organization said they did not deal with health advocacy. Ellen Somekawa, the executive director, went on to add that The Philadelphia Inquirer published a story on tuberculosis among the Chinese and people started suspiciously eyeing Asians sitting next to them at restaurants and wondering whether they might have tuberculosis.

While hepatitis B is a virus that afflicts primarily Asian Americans, some are reluctant to speak about the topic due to the fear that hepatitis B will incite discrimination and backlash. The SARS pandemic, just like the fears of tuberculosis, kindles the paranoid racist assumptions people have about Asian Americans. The flip side is that the impact of hepatitis B on the Philadelphia community could be devastating if it isn’t addressed.

Yet another reason hepatitis B does not get the same attention as HIV is that, unlike HIV, there is already a vaccine for hepatitis B, invented right here in Philadelphia. The biggest initiative right now in HIV/AIDS research is developing a vaccine.

The first step in understanding hepatitis B in Philadelphia is screening for the virus. For many of the teenagers in Dr. Siu’s study, it was a shock to find out they had hepatitis B.

Recently, CHIC was awarded a $1.5-million federal grant to continue its services to low-income Chinese-speaking Philadelphia residents. Part of the money is being used to screen 500 Chinese Americans for hepatitis B by holding free community health clinics. Of the first 90 clients who have been screened, 10 percent have hepatitis B.

Jay vividly recalls the day he first got tested for hepatitis B, though many other memories about China are now fuzzy. He was 7, in first grade in a Guangdong elementary school. The school said everyone needed to get a blood test for everything. Families were told to go to their doctors on their own and bring the results to school.

Seeing that needle for the blood work the first time is etched into his mind forever. "I remember ’cause I was scared of needles and ran away. My mom had to chase me and bring me back to the doctor," he remembers, with a laugh at what a baby he was then. "Because I’ve gotten all these shots and blood work … oh well, just a little pinch for me now." No one in Jay’s immediate family has the disease. He has no idea how he contracted it.

Before his family moved from China six years ago, he was even taking medication to deal with the hepatitis. He stopped when he moved to America. His family doctor and medical records were left behind. "I was fine when I came here [to Philadelphia]," he says.

At times like today, he feels all right. He is not on any medication for his hepatitis B. He sleeps about 10 to 12 hours each night and sometimes he has to stay home from school for several days if he doesn’t feel well. Normally, he plays softball and basketball after school and Yu-Gi-Oh card games with his best friend.

Jay, his younger brother and mother left China to join his father, who had already been living and working around Philadelphia for 15 years. The boys never lived with their father; he had been working hard in restaurants and a blanket factory throughout their lives. Their father used to occasionally visit them in their village in the Guangdong province.

There, his father had been a builder; he even constructed the house Jay grew up in. All the houses in the village were like that, built by the families who lived in them. There were no apartment buildings and hardly any cars. Fewer than 500 people lived there and Jay knew everyone.

His biggest adjustment to America has been getting around. "In China, I can go anywhere I want. But here, you have to take a bus. Cars around everywhere. …" It takes Jay and his mother about an hour to get to Chinatown from Northeast Philadelphia, where they live, via public transportation, a trip made more tiring by his condition. His mother doesn’t drive and his father, who does, works 10-hour days, six days a week, as a cook in a Chinese restaurant near the Franklin Mills Mall.

His parents speak no English, just Cantonese and a smattering of Mandarin, so the teenager must translate and help maneuver himself and his parents through the intricacies of the American health insurance system. Jay has AmeriChoice, which helps provide Medicare and Medicaid to low-income families. The first time he went to see a doctor in the United States was because of another emergency: He had a skin lesion in November 1998. His mother looked for a doctor in Chinatown so she could speak directly to him about her son. She found Dr. Siu in the heart of Chinatown.

Asian Americans are the third largest minority group in Philadelphia, and the fastest growing ethnic group in the United States, according to the U.S. Census Bureau. In Philadelphia alone, the Asian community has increased 55 percent from 1990 to 2000. Officially, Asian Americans comprise 4.5 percent of the city’s population, and the Chinese are the largest ethnicity of the Asian populations.

"One of the goals of the CDC is to reduce health disparities between racial and ethnic groups in the United States. One of the larger disparities is that caused by hepatitis B virus infection [and] liver cancer," writes Dr. Gary Euler, an epidemiologist at the Centers for Disease Control (CDC), in an e-mail exchange.

The results of Siu’s study demonstrate the striking imbalance between the health of the Asian-American and Caucasian-American communities. The infection rate in the Philadelphia study is much higher than the national average, but comparable to similar studies done in China. All of the participants were born outside the United States. Half of the kids felt more comfortable filling out the pre- and post-lesson surveys in Chinese rather than English.

A few years ago, a similar study was done in New York City, Euler recalls, adding that 17 percent of those students tested positive. "Most of them were born in China," he says in a telephone interview.

"Local small studies are helpful for the effect they have on the local community. … When small local projects are evaluated with data such as this, it helps in obtaining greater amounts of funding for even larger interventions. Many local small studies can provide a snapshot of the national health status as well," Euler explains.

National health organizations see Siu and CHIC as vital players in reaching out to the Asian-American communities in Philadelphia.

Five years ago, Siu was approached by Thomas Jefferson University Hospital to become director of the Chinese Health Information Center. In spite of his heavy work demands, serving more than 3,000 clients in his practice, along with spending time with his wife and two children, Siu felt he had to accept because CHIC was so "meaningful to the Chinese community."

CHIC was started in fall 1997 as a collaborative project between New York University’s Downtown Hospital and Thomas Jefferson University Hospital in Philadelphia. The original mission was to provide Chinese-language healthcare education about pregnancy, delivery and postpartum care, according to Lih-Yuh Chen, CHIC’s nurse specialist, who has been at CHIC since its genesis.

The idea of having Chinese-language healthcare education quickly caught on in the Philadelphia community and at Thomas Jefferson University Hospital. Hence, CHIC became a permanent presence in Philadelphia, with its own center at the corner of 10th and Chestnut streets occupying a prominent corner of the hospital, and located only three blocks from the recognizable ornate arch with Chinese characters. "Chinatown is part of Jefferson’s community so it’s very natural to make a connection and start it [here]," says Chen.

Last month, Siu and Kin Lam, CHIC’s program manager, met with Jim Lutz, program manager for the immunization program in the Philadelphia Department of Public Health, to persuade the city to provide free hepatitis B vaccines to their adult clients who don’t have the virus. The vaccine is only effective if a person is not infected with the virus.

Previously, the city provided free hepatitis B vaccines to children younger than 18 under a federal entitlement program if their health insurance didn’t cover the vaccines. Now, the vaccine will be available to Asian-American adults as well as children. The city recognizes that, with hepatitis B, "the prevalence is so high in the Asian communities," says Lutz. "Hopefully, this is a disease that will be eradicated through that vaccine program because humans are the only known host for hepatitis B." Euler predicts it will take another 60 years or so to be rid of the virus.

In 2002, the city’s Division of Disease Control recorded 97 cases of acute hepatitis B, but the number of people suffering from cirrhosis or liver cancer as a result of hepatitis B is not available. The city doesn’t have statistics for how many Philadelphians are living with hepatitis B, but based on the national average, there are at least 7,500 chronic hepatitis B carriers in the city.

   

What’s Up, Doc?: Pediatrician Philip Siu’s study of Chinese children living in Philadelphia showed nearly 1 in 5 have hepatitis B.

Photo By Michael T. Regan
 

Families like Jay’s directly benefit from the hepatitis B vaccine policy. Jay’s younger brother was immunized for free by Siu a couple years ago. Now his parents, who are at risk because they live with a chronic carrier, can also receive the vaccines for free.

Today’s teenagers and adults are the ones who have fallen through the cracks in the immunization effort. The American Academy of Pediatrics began recommending infants get the vaccine in 1991. Those babies who would have received the benefit of such recommendations are now 12 years old, and this implies that the children older than that wouldn’t necessarily have received the vaccination.

Getting babies vaccinated at birth is crucial to Philadelphia’s Department of Public Health prevention strategy. Each year, there are 140 births to mothers who have chronic hepatitis B. Of those mothers, 75 percent are of Asian and Pacific Islander descent, according to Lutz.

Clearly, the vaccine is a major weapon in eradicating hepatitis B in the world. The Centers for Disease Control website lauds the hepatitis B vaccine as the "first anti-cancer vaccine," since 80 percent of all liver cancers are caused by the hepatitis B virus. And the vaccine was developed at the Fox Chase Cancer Center.

Dr. Baruch Blumberg first identified the marker for hepatitis B in blood serum in 1967, and then also invented a vaccine to combat the virus. He is still at Fox Chase Cancer Center as a Distinguished Scientist, but he is also at NASA, directing fundamental space biology research on sustaining life in space. For his work, he was awarded the Nobel Prize in medicine in 1976.

The vaccine became commercially available to the public in 1982. At that time, Lutz explains, "There wasn’t a real good uptake of the hepatitis B vaccination." Nowadays, it is actually required for children born in Philadelphia, as well as Philadelphia school kids in kindergarten through 10th grade. Next year, the requirement will extend through 11th grade.

Fox Chase plays a vital role in Siu’s adolescent Chinese hepatitis B study because the nonprofit research institution analyzed the blood samples of the 97 teenagers. Siu’s main collaborator at the partner facility is Dr. Tom London, director of the Liver Cancer Prevention Center at Fox Chase, and one of the original members of Blumberg’s research team.

Not only does London do work at the local level, he is conducting the largest liver study in the world, comparing hepatitis B populations in Senegal and China. What he has found is that the Chinese are eight to 10 times more likely to develop liver cancer than the Senegalese, even though the latter have a slightly higher infection rate.

London and his team are trying to zero in on what genetic, viral and environmental factors cause such a high incidence of cancer among the Chinese. "We don’t know which factors are truly responsible," explained London in a telephone interview.

While still relatively rare in the United States and Europe, liver cancer is the third leading cause of cancer deaths in the world. The latest figures from the World Health Organization showed that more than 616,000 people died of liver cancer in 2001.

A liver transplant is seldom a life-saving solution, since the medical criteria are so strict. Of those on the waiting list for a liver transplant, only 4 percent are Asian. In Philadelphia, a 63-year-old Chinese man with chronic hepatitis B has been waiting for a liver transplant for over a year. He holds up well but has been seeing his hepatologist at Jefferson every month to monitor his liver.

Even if he gets a liver transplant, the survival rate of Asian Americans is very low. "Our race doesn’t react well to liver transplants," as Siu puts it. The Asian Liver Center is trying to figure out why.

There are many peculiarities to hepatitis B and its deadly impact, especially on Asians and Pacific Islanders. Genetics? Environment? These are questions that today’s doctors and scientists are trying to answer, in Philadelphia and all over the world. You would think that having a highly effective vaccine would prevent anyone catching the hepatitis B virus today. But it hasn’t.

Special thanks to ASIAC and Henry Quan for providing Cantonese interpretation services.

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