The Silent Killer
Hepatitis B is severely under-diagnosed and continually pervades the AAPI community in prejudice and discrimination
Infectious diseases have long been used to justify anti-immigration sentiment. In the past 100 years, the Asian American and Pacific Islanders (AAPI) community has battled fears of bubonic plague, SARS, and, most recently, COVID-19. There is also one major health disparity among the AAPI community that is severely under-diagnosed and continues to be affected by prejudice and discrimination: hepatitis B.
The Low Down on Hepatitis B
Hepatitis B is a serious liver disease caused by the hepatitis B virus (HBV) and the leading cause of liver cancer worldwide, though many aren’t aware of this fact. HBV is also known as the silent killer, because patients who are infected typically do not display symptoms until their disease has progressed to late stage liver disease or cancer. 75% of the estimated 2,200 people living with HBV in the US are unaware of their infection.
The virus is transmitted through bodily fluids, mainly blood and semen, typically due to sexual relations, sharing of needles or other drug-injection equipment, or from mother to baby during childbirth. Another easy way to remember how HBV is transmitted is BBS: blood, birth, and sex. Hepatitis B infection occurs in two stages: acute and chronic. A patient who does not clear the virus in six months becomes chronically infected. Although chronic hepatitis B cannot be cured, current treatments are highly effective at managing the disease and even reducing viral load to a non-infectious level.
There is also hope for eradication of hepatitis B, because the disease is completely preventable through a 2 or 3-shot vaccine series. But eliminating HBV requires us to ensure that those not protected get immunized and those who have the chronic infection are monitored and treated.
The Silent and Stigmatized Killer
We have effective treatments and vaccines, but why is the disease still so prevalent worldwide? Here in the United States, AAPIs account for <6% of the total population but more than 50% of infections. This high percentage is attributed largely to foreign-born populations who were likely infected at birth and who often struggle to access culturally competent health care. These communities have many challenges and barriers, including limited English proficiency, lack of health insurance, and lack of awareness or understanding of the disease. Stigmatized rumors and perceptions about hepatitis B can reinforce fear and silence, serving as a significant barrier to early diagnosis and treatment.
‘Bad people, bad behavior’
The notion that those infected with hepatitis B “deserve their infection” has been perpetuated among AAPI communities. Misconceptions that those infected have engaged in risky behaviors and are sexually promiscuous delay or even prevent many patients from getting tested.
“Moreover, [patients] were being judged by family and friends as if they had acquired HBV in one of these ways. One young woman had been beaten by her father, ostracized by the whole family and thrown out of her home. In other cases (both men and women), marriages were under threat after receiving a diagnosis of HBV, because of perceived infidelity.” — The Lived Experience of Chronic Hepatitis B
Isolation
As previously stated, hepatitis B can be transmitted only through BBS — Blood, Birth and Sex — but many people mistakenly believe it can be transmitted through other means: sharing food/water, holding hands or other physical contact, dirty conditions. Fear of transmission not only causes external stigmatization but self-stigmatization, with some patients isolating themselves or even avoiding having children.
“I’ve had patients who self-stigmatize and fear the repercussions of disclosing their infection, so they keep it to themselves and don’t want to tell their partners or family members. When they do bottle it up, it eats away at them: they live in constant fear of discovery and they bear the burden of the disease alone.” — The Lived Experience of Chronic Hepatitis B
A Few Ways to Help
Educate Yourself
Before attempting to educate others and address existing misconceptions, you must educate yourself! This article provides key pointers about hepatitis B transmission, prevention, disparities that are essential but not sufficient.
Here are some resources to help build and reinforce your foundation:
- this hepatitis B basics fact page
- this video made by Team HBV
Start a Conversation (with Stories)
Easier said than done! I remember the first time I tried bringing up these sensitive health topics among my aunts and uncles. As soon as I mentioned “sexually-transmitted disease,” they gave me questioning stares. I usually backed down, but one time, I decided to press forward, armed with real patients’ stories. Providing a human face to the disease struck a chord in a way that scientific jargon and evidence-based statements could not. After discussing hepatitis B with a few family members, I later learned that a grand aunt sought testing and received a positive diagnosis. Creating space for open conversation allowed her to inform us and not hide her diagnosis.
Here are more great resources for hepatitis B stories that I use:
- the #justB campaign, which features patients’ stories monthly
- the Be About It documentary
- this discussion guide
Go Public!
Start advocating for and reaching out to these vulnerable communities. Start with your family and friends and the organizations in which you participate and then expand to include other local organizations. I briefly mentioned Team HBV above. It is a national organization composed of high-school and collegiate chapters spread across the globe — a fantastic way to start connecting with fellow hepatitis advocates! I have had wonderful experiences with my chapter at Stanford and have learned and grown by participating in multiple aspects of hepatitis advocacy from clinical management to political advocacy. If you don’t have a chapter near you, start one!
We have a vaccine and the means to monitor and control HBV — tools with which to eradicate this pernicious disease. But to use these tools, we must connect with our communities and break down old, deeply-rooted fears and biases. To get involved in local efforts, visit Mapping Hepatitis Elimination in Action.
Thank you to Nadine Shiroma for her edits.
