By Patricia Jiayi Ho Staff Writer
As an Asian-American politician, Chi Mui was part of an elite new group of leaders. He became San Gabriel's first Asian mayor in March 2006.
As an Asian, Mui belonged to a larger, more disturbing health care demographic. He died of liver cancer after about a month in the position, at 53.
Mui had hepatitis B, a disease that can be prevented and that is dubbed a "silent killer" that affects a disproportionate number of Asians. The virus puts them at greater risk of developing liver cancer and cirrhosis.
The HBV-related death rate among Asian Americans is seven times greater than the rate among American whites, according to the Centers for Disease Control and Prevention.
Race-specific attention to the virus consists so far of patchwork efforts by nonprofits, some of which piece together funding sources for workshops, screening fairs and vaccinations.
Health care workers say a more comprehensive approach is needed.
"Hepatitis B and liver cancer is the greatest health care disparity," said the center's director, Dr. Sammy So. "Almost every Asian knows of someone who died from liver cancer."
Chronic hepatitis B infection affects 0.3 percent of the U.S. population, but Asians make up more than half, or roughly 700,000, of the known hepatitis B carriers, according to the Asian Liver Center at Stanford University. Most contract the virus overseas, and many are unaware they have it.
Of the HBV-positive women who gave birth in Los Angeles County in 2005, 81 percent were Asian, according to the Los Angeles County Department of Public Health. Nearly 50 percent were from the San Gabriel Valley.
While the virus can be spread through unprotected sex and shared needles, experts say most Asians become infected through their mothers during birth or in childhood.
A vaccine can actually knock down the disease after it is contracted if administered at young enough an age.
The Herald Cancer Association in San Gabriel relies on funding from foundations, medical centers and drug companies to sponsor outreach programs, which are held in Mandarin and English.
"Without the help of the government, we're just a nonprofit at the mercy of pharmaceuticals, whether they will give us the grant or not," said Rev. David Lee, director of the Christian-based association.
At a screening event in October, more than one out of 10 participants tested positive for the virus.
Follow-up is crucial for carriers, said Lee, who was diagnosed as a carrier in his late teens.
To compare Chi Mui and Lee, the difference early detection makes is life or death.
Like Mui, Lee, 47, said he realized he was infected when he first tried to donate blood as a young man. Based on the science back then, he was told not to worry about it. But Lee had half his liver removed at 34, after doctors discovered a tumor.
Mui was less fortunate. He was caught up with campaigning for City Council, said Mui's widow, Betty Mui. After two years without tests, doctors found an 8cm liver tumor. The cancer later spread to his pelvic bone.
"It developed so fast," said Betty Mui, who is now a key volunteer at Herald Cancer Association. She also contracted the virus at a young age and gets regular blood tests and ultrasound screenings. "People have to be very careful about it."
Hepatitis B can go undiagnosed. Carriers usually have no symptoms and appear healthy. It may not show up on tests for liver function, and doctors don't always think to order specific blood work to test for it, Lee said.
By the time patients notice the yellow eyes and swollen bellies associated with cirrhosis, or the vague upper abdominal pain that may indicate liver cancer, their problems are at an advanced stage. Treatment of liver disease is complicated and risky; transplants are hard to come by.
"We feel that in the Chinese community, knowledge is spreading," said Lucy Young, Herald's cancer projects director. "We receive quite a few phone calls about when we will do blood tests again, vaccinate again."
The programs are on hiatus while funding is sought. Three shots costing as much as $60 each are required for vaccination. The association also works with a hodgepodge of community groups in San Diego and Orange counties.
"We still have a lot of work to do, not only in San Gabriel Valley," Young said. "Those carriers, most of them are in the underserved population. Either they don't have insurance coverage or they don't know where to go for follow-up."
The hepatitis B vaccine was introduced in the early 1980s. Since the early '90s, it has been administered to most infants born in the United States. In California, vaccination is required for entry to kindergarten and the seventh grade, said Laurene Mascola, who heads Los Angeles County's Acute Communicable Disease Control Program.
The county's hepatitis B efforts center on vaccinating infants and tracking pregnant women who have HBV, and high-risk behavior groups such as jail populations and gay men.
"Eventually we'll burn out the disease as more and more people are vaccinated," Mascola said.
Nonetheless, some health care professionals are eagerly awaiting the outcome of a bill currently making its way through the state Assembly.
"This is something near and dear to my heart," said the bill's author, Assemblywoman Fiona Ma, D-San Francisco. She contracted the virus from her mother.
Without screening and management, one in four with the virus will die from liver cancer or cirrhosis, according to the Asian Liver Center.
San Francisco launched a campaign in April to test and vaccinate all its Asian residents for hepatitis B, a combined effort by the city government, private healthcare and community organizations.
AB 158 was passed in the Assembly Health Committee in April, the first of several hurdles it must clear before it can land on the governor's desk in the fall.
"It is a public health concern; it deserves funds from legislative avenues," said Jeff Goad, an associate professor of clinical pharmacy at USC and a member of a hepatitis B taskforce. "There is not a lot of action to fund treatment and management. The government ... allows the private system to handle treatment, but that doesn't always happen."
One of the organizations that stands to benefit from the bill is St. Vincent Medical Center in Los Angeles. The hospital is opening a center in July that will deal specifically with hepatitis in Asians and could receive some of the $4 million the bill proposes.
"I don't think there is a recognition even among physicians of the magnitude of the problem among Asians," said Tse-Ling Fong, a liver specialist who will direct the Asian Pacific Liver Center.
Fong said the center will target Asians 18 and older, particularly those born overseas. In keeping with the hospital's charitable care policy, the center will accept both insured and uninsured patients.
"My hope is that three or four generations from now, hepatitis B will be something like smallpox that we no longer talk about," Fong said.