Local Hepatitis B Advocates Debunk Virus Myths and Say We Need More Education to Overcome Stigma

While Asian and Pacific Islanders (APIs) account for less than 5 percent of the U.S. population, they comprise half of the estimated 1.2 million people living in the United States with the chronic hepatitis B virus (HBV), according to the U.S. Centers for Disease Control and Prevention (CDC).

It’s a statistic that hits close to home for APIs living in Washington state. The Washington State Department of Health determined that there were 15,664 reported cases of chronic HBV from December 2000 through December 2011 statewide. Half of all those cases happened in King County — home to 353,702 of the 674,573 Asian and Pacific Islander Americans in Washington state, according to the 2010 Census.

Awareness, education and action are key for the API community to effectively address its ties to hepatitis B, explained Japanese American Citizens League Seattle Chapter members Nadine Shiroma and James Arima. Shiroma and Arima have been working for the last three years to present and bring to light accurate information on chronic HBV.

Hepatitis B is the world’s most common liver infection, affecting 2 billion people, which is nearly one-third of the world’s population. Most live in poor nations where vaccination and treatment is not readily available. Hepatitis B is a treatable disease that is well-hidden and often misunderstood by the general public, even in the United States, said Shiroma. A person can be infected for years — perhaps even decades — without having symptoms, as the virus silently causes damage to the liver, according to the Hepatitis B Foundation. While there is currently no cure for hepatitis B, there are medications that can slow down the virus and help prevent liver damage.

The CDC describes hepatitis B as a contagious liver disease that ranges in severity from a mild illness lasting a few weeks to a serious, lifelong illness. It results from infection with HBV. The infection is either “acute” or “chronic.” Acute HBV infection is a short-term illness that occurs within the first six months after someone comes in contact with the virus. Acute infection can, but does not always, lead to chronic infection. Chronic HBV infection is a long-term illness that occurs when the virus remains in a person’s body. Hepatitis B is spread when blood, semen or other body fluid infected with HBV enters the body of a person who is not infected, according to the CDC. People can become infected from sex with an infected partner; sharing needles, syringes or other drug-injection equipment; sharing razors or toothbrushes with an infected person; direct contact with the blood or open sores of an infected person; and exposure to blood from needle sticks or other sharp instruments. People can also become infected with HBV at birth, when the virus is spread from an infected mother to her baby. This is the primary way that APIs living with chronic HBV in the United States became infected, Shiroma said. They are often children of immigrants infected with the virus who came from countries that did not have access to vaccination.

“After the hepatitis B virus was discovered in 1969, a vaccine was developed for it in the 1970s,” Shiroma said. “You can imagine that, for our country [the United States], that made a huge difference for people being able to be vaccinated. But in countries like Vietnam that were in turmoil, wrought in war, and Cambodia, Laos — those areas — they didn’t have the time to begin to use those drugs. And so this has been an intergenerational type thing.”

Another obstace for people living with chronic HBV within the API community has been the stigma attached to the disease due to fears of transmission based on misinformation. It is not widely known, for example, that HBV is not spread by sharing eating utensils, breastfeeding, hugging, kissing, holding hands, coughing or sneezing, Shiroma explained.

“I think that part of the problem is the perception of hepatitis B,” Arima added. “Out of ignorance, people don’t realize how people get hepatitis B. So [people living with hepatitis B] get that stigma that they got it because of their behavior choices. Rather, they were just born with it because those were just the conditions that their parents came from. Education needs to be out there.”

Oftentimes what’s standing in the way of people getting help is a lack of understanding of the disease itself and the treatment process, said Michael McKee, director of health services and community partnerships at International Community Health Services (ICHS). ICHS is a nonprofit community health center that offers affordable health care services to Seattle and King County’s API communities, as well as other underserved immigrant communities. That lack of understanding is what leads to stigma.

“Probably the biggest barrier in reaching community members with information about hepatitis B is the confusion that is associated with it,” McKee said. “For example, it is difficult for some to understand the subtle differences between hepatitis A, B and C.”

Hepatitis A is an acute disease contracted from food and water. People with hepatitis A usually get better on their own. There is a safe vaccine available for the hepatitis A virus. Hepatitis C is usually a chronic disease and infects people through blood and needles. There is no vaccine for hepatitis C.

McKee said there is also confusion about the different conditions involving hepatitis B itself. A person who has hepatitis B can have a chronic condition and should be getting medical treatment. Another person may have had a past infection and developed immunity to the virus. And yet another person may not have a chronic infection or history of past infection, and thus, would need a vaccine to prevent future infection.

“For community members who are not previously infected and not immunized, they should get the three shots to develop immunity,” McKee said.

Approximately one in 10 Asian and Pacific Islanders are at risk of chronic infection with hepatitis B, McKee said, which greatly increases risk of developing liver disease, including liver cancer.

In order to address the stigma in API communities associated with hepatitis B, McKee said that ICHS regularly informs people about the cancer risk. Cancer and cancer treatments are more familiar to people and do not carry the same stigma.

“Stigma about hepatitis B is also a barrier to patient education and access to care,” McKee said. “We try to normalize this discussion by encouraging people to ask for a blood test for chronic hepatitis B as a screening test for liver cancer risk. It’s a lot like getting a mammogram for breast cancer, a pap smear for cervical cancer or doing a FOBT or colonoscopy of colon cancer.”

Another strategy ICHS applies with the API communities is talking about chronic hepatitis B as a family health issue, which also helps to move past the stigma.

“What we have learned at ICHS is that there is not a one-size-fits-all approach when it comes to meeting the diversity within the API communities,” McKee said. “Still, we find that one-on-one outreach and education is effective, as many people do not feel comfortable sharing personal health information or asking questions in groups.”

Shiroma said members of the API community need to raise their understanding of hepatitis B to the level that people living with the disease have.

“We need to get people to understand the relationship between knowing about HBV and being proactive about it,” Shiroma said. “Many people in our community are not touched by HBV. Our families weren’t — James [Arima’s] and mine. We didn’t even know what hepatitis B was [until 2010], whereas when you ask somebody whose family has it, they know immediately.”

Shiroma said people need to get tested for hepatitis B and vaccinated if they are not infected.

“The reality is you don’t have to be so fearful about HBV,” Shiroma said. “[People] should know about it and should take care of themselves.”

For more information and resources on hepatitis B, please visit www.hepb.org.

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