Wade Gong's sister was 28 when she first felt a deep pain near the side of her stomach. Then she noticed the lump.
The Chinese immigrant was uninsured, so she didn't go to the hospital right away. When she finally did, it was too late. She was in the late stages of liver cancer caused by hepatitis B, a silent virus that had been assaulting her liver since she was born.
An Amherst graduate and math whiz who lived with her brother and parents in Rosemead, she died six months after being diagnosed.
During his sister's illness, Gong, 27, learned he also was infected. "It was scary," he said.
Hepatitis B, a deadly, infectious virus that can be transmitted through childbirth or an exchange of blood or semen with a contagious carrier, affects Asians like Gong far more frequently than the U.S. population overall.
Most infected Asians contract the virus from their mothers at birth, according to the Centers for Disease Control and Prevention. Many were never vaccinated as infants, and infected adults often don't realize they carry the virus until they become ill.
Although they make up less than 5% of the nation's population, Asians and Pacific Islanders account for more than half of the confirmed 1.2 million cases of hepatitis B infections in the U.S., according to the CDC. The disproportionate infection rate is a special concern in Southern California and particularly Los Angeles County, where Asians constitute 14% of the population and are the fastest-growing immigrant group.
Exposure to the virus early in life increases the chances that it will travel to the liver, scarring, inflaming and causing disease or malignancy in the organ that cleanses the body's waste.
Testing is the only way to determine the presence of the hepatitis B virus, but the lack of symptoms means that infections can be overlooked. "It's a very sneaky virus," said John W. Ward, the director of the CDC's division of viral hepatitis.
One in 12 Asians in the U.S. is estimated to have the hepatitis B virus, and if they are not tested, 25% will die of liver diseases such as cirrhosis, fibrosis or cancer, CDC research shows.
In an effort to curb the disparity in Asian immigrant communities, the CDC has developed its first nationwide multilingual campaign. Dubbed Know Hepatitis B, the campaign will enlist the help of Asian community groups and promote testing, vaccinations and treatment through a series of commercials, billboards and online and print ads in English, Korean, Chinese and Vietnamese.
Ward said the goal is to alert those who are at a high risk of contracting hepatitis B, in part due to gaps in international and U.S. health policies.
Since the 1990s, California has required hepatitis B vaccinations for children before they are allowed to enter middle school. At-risk pregnant women also are automatically screened, protecting children born after 1990 in the U.S. from contracting the virus.
But Koy Parada, the co-chair of Hep B Free-Los Angeles, part of a national coalition working to bring down infection rates in Asian and Pacific Islander communities, said the law did not cover people older than 13 or require testing of children who had been vaccinated. The vaccine does not protect children who were already infected, many of them in Asian immigrant families.
"We recommend that anyone from Asia and other countries of high prevalence get tested," Parada said.
Asian health advocates like Parada have been working for decades to address hepatitis B. Since 2007, more than 18,000 people have been screened for hepatitis B at the Asian Pacific Liver Center in Los Angeles.
Senior nurse practitioner Mimi Chang opened the center and co-chairs Hep B Free-Los Angeles with Parada. Both women applaud the CDC's new education and testing initiative. "It's multilingual, so it will reach people who are most vulnerable in a language they are most comfortable speaking," Parada said.
Without health coverage, a hepatitis B test can cost $50 and treatment can cost $300 or more a year. "For those people who don't have access to health insurance, they have nothing to follow up or manage their care," Parada said.
While in college, Danny, now 27, learned that he had hepatitis B after getting a free screening at a health fair outside his church. He asked that his full name not be used because of the stigma associated with the virus.
That is a significant concern and has hindered efforts to get people tested, diagnosed and treated early, Chang said. Some people erroneously believe that eating or living together can transmit hepatitis B, she said. "So if a grandma has hepatitis B, her kids do not want to have their kids baby-sat by her," she said. That fear of being ostracized by family members creates an " 'I don't know so I'm fine' type of mentality," Chang said, "so they're not testing it because of that."
After initially testing positive, Danny went to the Asian Pacific Liver Center for additional blood work, which confirmed that he was infected. A nurse told him regular blood tests and ultrasounds were needed to monitor his liver. But two years passed before he followed up. "I didn't have insurance," he said. Now insured through a new job, he is receiving regular care and has had no symptoms.
Experts note that many Asians see friends and relatives die of liver problems, but don't associate it with hepatitis B, a leading cause of cancer in their communities.
Gong's family emigrated to California from China 24 years ago, when he was 3. "Me and [my sister] were born with it," he said. His mother is infected with the virus. His father is the only member of the immediate family who has not tested positive. Now about the age his sister was when she died, Gong is vigilant about monitoring his health and ensuring that he knows if and when he may need to start treatment.
"Had it been more publicized … I think my sister might have been tested earlier," he said. "She might still be alive."
titania.kumeh@latimes.com
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