Dr. Karen Kim is the board president of the Asian Health Coalition where she creates awareness about hepatitis B in the Asian-American community.
More than half of the people infected with hepatitis B in the U.S. are Asian-Americans, yet many don’t know they have the ailment and they don’t know how to prevent it.
An estimated 1.2 million people in the U.S. have hepatitis B, according to the Centers for Disease Control and Prevention.
Approximately 1 in 12 Asian-Americans are living with chronic hepatitis B and many don’t know it.
Dr. Karen Kim, a gastroenterologist at the University of Chicago Medicine, said her mother died in 1996 from complications of hepatitis B. Dr. Kim, who was born and raised in Hyde Park, said her parents immigrated from South Korea in the 1950s. Her mother first realized she had the disease in 1991 after the doctor did a liver biopsy after her bloodwork came back abnormal.
The doctors found that she had chronic hepatitis B-related liver cancer and cirrhosis.
“At that time, my mother was asymptomatic, as are most people with chronic liver disease,” Dr. Kim said. “She probably had hepatitis B since birth, but was never diagnosed even though she came to the country since the age of 22.”
Hepatitis B can be transferred by the mother to her baby at birth, through unsafe blood transfusions or sexual intercourse. Nearly 70 percent of Asian-Americans and Pacific Islanders living in the U.S. were born or have parents who were born in countries where hepatitis B is common, according to the Centers for Disease Control and Prevention.
Twenty-five percent of adults who were not vaccinated early and become chronically infected with hepatitis B as a child will die from liver cancer and cirrhosis, according to the World Health Organization.
After her mother’s death, Dr. Kim was determined to spread awareness of the disease in the Asian-American communities. Five years ago she became the board president of the Asian Health Coalition – an agency focused on promotion programs in Asian communities throughout the metropolitan area.
“The most disturbing thing about all of this,” Dr. Kim said. “I had gone through medical school, residency and fellowship, and I have never been told that there was a disparity of hepatitis B among Asian-Americans.”
According to the Asian Health Coalition, 5 to 15 percent of Asian-Americans in Chicago are infected with chronic hepatitis B.
In May organizations in Chicago like the Asian American Institute and Pan Asian Voter Empowerment group rallied to support the hepatitis B bill (HB5193) in Illinois that would create an organization focused on health advocacy in the Asian-American community, guide screening and immunization and include a strategy to screen a targeted sample of high-risk individuals. The bill passed the Illinois House, but has stalled in the Senate.
The Asian-American groups that rallied in May will be meeting with state legislators Dec. 13 about the hepatitis B issue and possible solutions, according to Asian American Institute’s senior staff attorney Andrew Kang.
"We are hoping that we will get an agreed upon next steps,” Kang said. "As we start prioritizing our budget, we need to see if our legislators will prioritize a health issue as critical as this one."
The disease is considered a silent killer since most people don’t experience symptoms in the beginning stages. As the infection gets worse, symptoms like yellowing of the skin and eyes, dark urine, extreme fatigue, nausea, vomiting and abdominal pain occur.
Most Asian-Americans and Pacific Islanders don’t get screened for hepatitis B because they lack awareness, there is a cultural stigma to finding out they have it, language barriers can cause them to avoid see health care providers or many lack health insurance.
Though there have been strides in better treatment and medicine that are suppressing the virus, Dr. Kim said there still needs to be more public awareness about the disease.
“I think the tragedy about hepatitis B is that at all levels we still don’t educate ourselves and others about this disease,” Dr. Kim said. “I don’t understand how our policies don’t close this disparity gap. I think we need to spread the word at all levels."