As many as 2 million Americans live with chronic hepatitis B. Without treatment, one-quarter of them will die from liver cancer or cirrhosis, but many don't even know they're infected. New research describes a public health program to help the hardest-hit ethnic groups deal with the disease.
Though the incidence of hepatitis B has declined in the U.S. since the introduction of a vaccine in 1982, it's still a leading cause of death among Asian Americans and Pacific islanders. About 1 in 10 foreign-born Asian Americans has the disease — 20 times the rate among the population as a whole and 50 times the percentage among non-Hispanic whites. Many hail from countries where the disease runs rampant; some pass it on to children at birth or via household contact.
About half of deaths linked to the hepatitis B virus (HBV) occur in the Asian-American community, which makes up just 5 percent of the U.S. population.
"It is really an alarming rate," said Johns Hopkins University public health professor Hee-Soon Juon, the paper's lead author.
In addition to considerable pain and suffering, medical and work-loss costs related to HBV total more than $300 million annually, and a recent study found that screening and vaccinating adults in this population would be cost-effective.
For researchers and activists, what makes the human and economic costs so maddening is that the disease is largely preventable. A relatively inexpensive blood test determines whether a person is at risk and needs vaccination or whether a person is infected and requires monitoring and (eventually) anti-viral medication.
The prevalence of the disease among Asian Americans has remained relatively constant, at least partly due to a lack of awareness. For example, even though experts recommend it, more than one-third of highly educated Asian Americans in San Francisco told a research team they hadn't been tested for hepatitis B. Recent immigrants often carry cultural myths, such as a belief that one might contract hepatitis B from shared chopsticks.
Even doctors sometimes don't know how to treat HBV: Nearly half of physicians surveyed by the San Francisco Department of Public Health and the University of California, San Francisco couldn't select the proper test for chronic hepatitis B. Juon, a native of Korea who lives in the Baltimore area, said her own doctor failed to recommend screening — she turned out to need vaccination.
Problems like these help make chronic hepatitis B a so-called "silent killer" — infected individuals may believe they're healthy until such symptoms as abdominal pain or jaundice show up, too late for treatment to be effective.
Juon examined a program run by the Hepatitis B Initiative (HBI), founded in 1997 by then-Harvard public health graduate student Leslie Hsu Oh after her mother and brother died from hepatitis-linked liver cancer. The group worked with Boston community centers to educate locals, offering free screenings and vaccines to the largely Chinese-American population the centers served. After Oh relocated to Washington, D.C., she created a similar program (HBI-DC) and began working with a team led by Juon to track the results.
They targeted the hard-to-reach Korean-American community, an ethnic group with a high prevalence of HBV and an uninsured rate of 34 percent — double the percentage of the general population. The District of Columbia-based initiative focused on churches, a focal point of the Korean community. As in Boston, the events emphasized cultural relevance, from the obvious (translating brochures) to the not-so-obvious (including booklet artwork appropriate for Asian-American sub-ethnic groups, such as Koreans or Chinese).
Beginning with a pilot program at a single church in Vienna, Va., in 2003, HBI-DC expanded to nine churches in the region, testing 1,775 people in a three-year period — as many as the Boston group had worked with in a decade. In some cases, pastors incorporated hepatitis B into their sermons to encourage members to participate.
HBI leaders are now advising groups in states like New York and Hawaii to replicate and adapt the program and shared the faith-based model at a national meeting of Asian-American pastors.
A range of universities, charities and government programs are tackling the issue on a variety of fronts, usually coordinating under the aegis of the 10-year-old National Task Force on Hepatitis B: Focus on Asians and Pacific Islanders. Stanford University's Asian Liver Center, for example, organizes a variety of community education, testing and vaccination events in the San Francisco Bay Area and began a "jade ribbon" public awareness campaign in 2001. The Asian Liver Center is working with the World Health Organization on more global efforts.
Yet HBV infection rates remain alarmingly high. It may be a money issue: Despite tens of millions of dollars spent by private donors and the Centers for Disease Control, hepatitis B treatment receives nowhere near the funding of high-profile diseases like AIDS. Just one example: Last year, the CDC's National Center for HIV/AIDS, Viral Hepatitis, STD, and TB Prevention spent more than 30 times as much on AIDS as on hepatitis A, B and C combined. The disparities are particularly glaring given that well over 300 million people worldwide have chronic hepatitis B.
"You look at the global burden of disease, and hepatitis B is near the top," said Dr. Stephanie Chao, a postdoctoral fellow at Stanford's center. "But there is (comparatively) no global funding — people don't pay attention, so other people keep dying."
Until the groups most affected by the disease raise their voices louder, that's unlikely to change.
"In the Asian community, this is something they're not comfortable talking about," Oh said. "It's not only a silent killer because you don't know if you have it — people are continuing to enforce that silence by not talking about it."
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