Calling Out the Silent Epidemic
JACL passes an emergency resolution to support legislation and education on hepatitis B.
CHANDLER, Ariz.—It was a disease that rested in the shadows of their lives until its awakening ravaged them. Gilbert Lee lost his father Tommy to hepatitis B in 2003, and since then it has become a personal mission to raise awareness about the silent epidemic in the Asian Pacific American community.
On grassy fields where loved ones gather to bid farewells, he realized the impact of the disease on his personal life — a friend’s father also succumbed, his grandmother carried the disease and another friend’s father was fortunate enough to get a transplant before the disease took him too.
That was three funerals in three-plus years, said Gilbert, 30.
So he decided to do something about it.
He launched a Web site and a video with sobering statistics:
• 1 in 10 APAs are carriers
• More than half of the hepatitis B carriers in the U.S. are APAs
• Over 1 million people die from hepatitis B related diseases in the world each year
And perhaps most frightening of all, there is a vaccine for hepatitis B.
“It affects our community in ways unrealized by people in our community and the general public. Asians don’t really know,” he said. “It’s there and it festers and it devastates you.”
Hepatitis B is a disease caused by infection with the virus HBV, which can be transmitted by blood transfusions, sharing or reusing needles and unprotected sex. It is more common among APAs than any other racial or ethnic group and many APAs become infected when unknowing mothers pass it on to their children, according to the Asian Liver Center (ALC) at Stanford University, the only non-profit organization in the U.S. with a mission to address the higher rate of hepatitis B and liver cancer among APAs.
HBV can lead to cirrhosis of the liver, liver failure, and liver cancer. But the ALC says many APAs remain untested so the disease, which doesn’t have many detectable symptoms, continues to lurk.
Gilbert’s personal mission is just one of many grassroots and national efforts to help raise awareness about hepatitis B as well as issues of health disparities and access to health care programs in the APA community.
The first ever National Hepatitis B Act (HR 4550) was introduced to Congress Dec. 15, 2005, by Rep. Mike Honda, D-San Jose, and Rep. Charlie Dent, R-PA, to focus government funding and advocacy for hepatitis B education, research and treatment. In San Francisco, awareness is raised through various activities during May’s “Hepatitis B Awareness Week."
At the June 21-24 national JACL convention, the national council unanimously passed an emergency resolution to support legislation like the National Hepatitis B Act as well as encourage members towards “development and/or support educational and outreach programs that promote the health and wellness of JACL members and other Asian Americans.”
“This is the direction which JACL should move in,” said MDC Gov. Ron Katsuyama, who introduced the emergency resolution for consideration. “Not to become a health care provider, but to join in the coalition and help in organizing and raising awareness for screenings.”
Katsuyama is active in the Dayton, Ohio Asian American Council and a coalition which counts JACL as a component. With his involvement in health conferences, he saw how important it was to help the underserved APA communities.
“One might ask, why should JACL be involved in such an initiative? We are basically a civil rights organization. My answer is that civil rights has many facets,” said Katsuyama in a statement to the national council. “We continue to be vigilant in our anti-defamation efforts, and this must continue. However, we have not entered other arenas. As we move toward universal health care, it is said that health disparities in status, access to care, and provision of quality and appropriate types of care will become among the salient civil rights issues of the 21st century.”
The importance of the emergency resolution was underscored by the June 8 Food and Drug Administration approval of a vaccine that blocks two strains of viruses that cause cervical cancer.
“What they say about [the disease] striking quickly … we had him for 3 and one-half months,” said Gilbert, 30.
Looking back, he attributes his father’s passing to lack of awareness even on his doctor’s part. But he’s encouraged by the national movement to push for more education.
“It comes a situation where our community can embrace it as a cause,” said Gilbert.
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