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Tapestries: Interwoven voices of local and global identities
Volume 4
Issue 1 Threats to the American Dream
Article 12
2015
Hepatitis B Interventions in East- and SoutheastAsian Communities in the U.S.
Alizarin Menninga
Macalester College, [email protected]
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Menninga, Alizarin (2015) "Hepatitis B Interventions in East- and Southeast-Asian Communities in the U.S.," Tapestries: Interwoven
voices of local and global identities: Vol. 4: Iss. 1, Article 12.
Available at: http://digitalcommons.macalester.edu/tapestries/vol4/iss1/12
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Hepatitis B Interventions in East- and Southeast-Asian Communities
in the U.S.
Alizarin Menninga
Preface
After reading scholar Alondra Nelson’s Body
and Soul: The Black Panther Party and the Fight Against
Medical Discrimination, a book that focuses on the
link between sickle cell anemia and the political
resistance to community-based health initiatives, I
became interested in other diseases that are culturally, racially, and ethnically specific. I realized within my own community that hepatitis B is common.
Both my mother and grandmother have had hepatitis B. As a Biology major and an American Studies major, I have sought ways to challenge racial
injustices in health and medicine in the U.S. I present
that Asian American and Pacific-Asian communities
in the U.S. have specific needs to be addressed in
the prevention and treatment of hepatitis B. In this
paper I encourage an openness to the question: Can
there be a disciplinary focus on this intersection
from elementary education to med school?
As noted, this paper seeks to delve into
the study of Asian Americans’ relationship with
hepatitis B. I reference medical vulnerability in
relation to white males because the health field is
largely comprised of and bases their information
on this group. However, “Asian American” is an
incredibly broad term that encompasses people from
Pakistan to Korea, and from recent migrants to
people whose families have been in the U.S. since
the 1800s. In the introduction to The Very Inside:
An Anthology of Writing by Asian and Pacific Islander
Lesbian and Bixesual Women, Sharon Lim-Hing
describes how the term “Asian” signifies groups
of people from South Asia or East Asia, two very
different cultures, depending on context [1]. In
essence, it is important to name where specifically and regionally these people have their origins.
She says, “In Canada, “Asian” has come to mean
East Asian, and South Asians must struggle against
invisibility” [1]. By not specifically naming origins,
some feel marginalized and their culture is seen as
invisible. In my research on hepatitis B, I encountered resources for “Asian American and Pacific
Islanders” or “API” with hepatitis B [2]. However, I
did not encounter any research on hepatitis B that
included “indigenous Samoans, Fijians, Hawaiians,
Guamanians, or Polynesians” [1]. Though “Asians”
and “Pacific Islanders” have been grouped together since 1990 for political simplicity, it is important
not to essentialize vastly different groups of people.
In the research I conducted for this paper, authors
universally used the term “Asian American” to refer
to foreign-born Asian people who have migrated to
the U.S. I, however, will be adopting Nilda Rimonte’s term “Pacific-Asian” to refer to people who
speak an Asian language, carry epistemologies of
Asian cultures, and are often foreign-born. I will use
“Asian-American” to refer to Asian-heritage people
who have grown up “American” [3]. In cases where
the source from which I retrieved the information
renders the distinction indistinguishable, I leave the
term “Asian.”
Acronym Glossary:
HBV
Hepatitis B virus
CHB
Chronic hepatitis B
HCC
Hepatocellular carcinoma
SFHBFC
San Francisco Hep B Free Campaign
Introduction
Over 350 million people are infected with
CHB worldwide [9], and over seventy-five percent
of these hepatitis B virus (HBV)-infected people are
Pacific-Asian [10]. Over 2 million people in the U.S.
Figure 1. Worldwide CHB prevalence from
2005. From the CDC [49]: “Prevalence of chronic
hepatitis B virus infection among adults in 2005”.
Hepatitis B Interventions in East- and Southeast-Asian Communities in the U.S.
are living with chronic hepatitis B, with Pacific-Asians
accounting for half of these cases [16] [17]. Though
less than 1% of the general U.S. population is
positive for the hepatitis B antigen (testing antigen-positive indicates HBV infection), 7-14% of
Vietnamese Americans, 9-14% of Chinese American
immigrants, and up to 28% of Laotian and Hmong
American young adults are HBV antigen-positive
[10]. Particularly, Vietnamese American males have
eleven times the risk of developing hepatocellular carcinoma--the cancer associated with untreated chronic hepatitis B infection--than that of white
American males [9]. A study of Chicago’s Chinatown
found that 11.1% of Chinese Americans were HBV
carriers [18].
Untreated actively replicating HBV can
develop into liver cancer. In the U.S., cancer is responsible for 1 in 4 deaths [11]. Liver cancer ranks
among the top fourth of lethal cancers for Asian/Pacific Islander males, and the top seventh for Black,
American Indian/Alaska Native, and Hispanic males
[12]. Fifteen to twenty percent of people with actively replicating HBV will develop cirrhosis within
five years, increasing chances of the disease evolving into hepatocellular carcinoma (HCC) given that
70-90% of HCC patients have cirrhosis (scarring of
the liver in late stage liver disease) [13]. People with
CHB have a risk of 15-25% throughout their lives of
death from HCC [14]. About 500,000 people worldwide die from cirrhosis and HCC annually due to
chronic infection; about 40,000 more people die annually of acute hepatitis B [15].
HCC is one of the fastest growing cancers
in the U.S., and is the second most deadly cancer
determined by survival time [14]. While non-Latino
white males had an incidence of 3.3 per 100,000 for
liver cancer by 1992, Korean American males experienced rates of 24.8 per 100,000, and Vietnamese
Americans at 41.8 per 100,000 [10]. Forty percent
of Asian males with CHB die of cirrhosis complications or HCC [13]. However, up to two thirds of
people with CHB may not know that they are HBV
positive [9]. This discrepancy is further exacerbated
as 60% of CHB patients report being asymptomatic [14]. These statistics alone show that there is a
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need to understand the disease and its effects on
the Asian-American and Pacific-Asian communities.
Hepatitis B can be differentiated from other
types of hepatitis by its prevalence, modes of transmission, late-stage manifestation, prevention, and
treatment (Table 1). There are five different hepatitis viruses from different taxonomic families, which
primarily replicate in the liver [4]. Three of these viruses--hepatitis B, C, and delta viruses--are primarily
transmitted through blood and other bodily fluids
[4]. Hepatitis A and E viruses are often fecally transmitted [4]. In 2012, there were an estimated 3,050
cases of acute hepatitis A virus infection, 18,760
acute hepatitis B cases, and an estimated 21,870
acute cases of hepatitis C in the United States [5].
Hepatitis B stands out as the leading cause worldwide of liver failure and liver cancer [6]. Hepatitis
A is also a contagious liver infection, but does not
cause chronic infection like HBV.
The outcome of an HBV infection is determined by an individual’s immune response. In most
cases of adult exposure to hepatitis B, the immune
system will eradicate the virus without treatment
and result in immunity to the virus [7]. However, a
small portion—about 2%—of infected people become virus carriers [8]. If the immune system response is not sufficient and the virus resides in the
infected individual for over six months, the person
is considered to have chronic hepatitis B (CHB).
Nature of Viral Infection
The hepatitis B virus enacts its pathology
when it infects liver cells [19]. Its genomic DNA enters the liver cell’s nucleus through pores, where it
is converted into covalently closed circular DNA
(cccDNA). In the nucleus, this cccDNA is transcribed
into many viral mRNAs. Upon leaving the nucleus for
the cytoplasm, these mRNAs are either translated
into viral proteins or packed into nucleocapsids to
be converted back into viral DNA. This new capsule
of HBV then is released out of the cell, along with
hepatitis B surface protein (Figure 2). This protein is
detectable as HBsAg in the serum in acute or chronic infection; its detection is used as a diagnostic tool.
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Hepatitis B Interventions in East- and Southeast-Asian Communities in the U.S.
Virus
Hepatitis A
Single-stranded RNA
Transmission causes
• Fecal-oral
• Contact more intimate than
“casual” with infectious
person
Hepatitis B
Partially doublestranded DNA
•
Hepatitis C
Single-stranded RNA
•
•
•
•
•
•
Hepatitis D
(delta hepatitis)
Single-stranded
circular RNA
Hepatitis E
Single-stranded RNA
Bodily fluid contact Vertical
transmission
Household and sexual contact
Subcutaneous needle use
Unsafe drug injection
Inadequate sterilization of
medical equipment
Unscreened blood
Less common: Sexual and
vertical transmission
•
Occurs among people already
infected with HBV
Blood contact
•
•
•
Fecal-oral (drinking water)
Infected blood transfusion
Vertical transmission
•
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Symptoms
• Fever
• Malaise
• Appetite loss
• Diarrhea
• Nausea
• Abdominal discomfort
• Dark-colored urine
• Jaundice
• Jaundice
• Dark-colored urine
• Fatigue
• Nausea
• Vomiting
• Abdominal pain
• Chronic liver infection resulting in cirrhosis
or cancer
• Fever
• Fatigue
• Appetite loss
• Nausea
• Vomiting
• Abdominal pain
• Dark-colored urine
• Grey-colored feces
• Joint pain
• Jaundice
• Chronic liver infection leading to cirrhosis
or cancer
• Greater risk of liver failure
• Quicker progression to cirrhosis
• Increased chances of liver cancer
•
•
•
•
•
•
•
•
•
Jaundice
Appetite loss
Hepatomegaly
Abdominal pain
Nausea
Vomiting
Fever
Risk of obstetrical complications
Occasionally leads to liver failure
Table 1. Comparative transmissions and symptoms of the five types of hepatitis. Information from
the WHO [50].
Basis for Diagnosis
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Hepatitis B Interventions in East- and Southeast-Asian Communities in the U.S.
Alizarin Menninga
Figure 2. HBV life-cycle. Figure taken from Urban et al. [19]: “The replication cycle of hepatitis B virus”.
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Hepatitis B Interventions in East- and Southeast-Asian Communities in the U.S.
Positive hepatitis B status is determined by
the presence of HBsAg in the serum of an infected
person, which can be detected in high levels [20].
The hepatitis B e Antigen (HBeAg) is secreted by
the nucleocapsid HBV gene, and is a marker of viral replication that indicates high levels of HBV. Patients are determined to have chronic hepatitis B
when they test positive for the HBsAg virus antigen for over six consecutive months. In HBV cases,
seroconversion refers to when a patient yields an
HBeAg-positive response to testing, and responds
to HBeAg-positive CHB treatment [21]. The median age of seroconversion in Pacific-Asian patients—
who are primarily infected at birth—is about 35 years
old [21]. Seroconversion happens spontaneously at
about 5-10% per year once a person is infected with
the virus [21].
Among other viral markers, serum levels of
both HBV DNA and HBsAg rise in cases of CHB [19].
The HBsAg level is an important diagnostic parameter of HBV positivity. Persistent HBsAg levels are
associated with increased risk of HCC.
The increase of serum alanine aminotransferase (ALT) after HBeAg seroconversion increases the risk of cirrhosis and HCC [13]. Ninety percent of neonatal HBV infections and 25-50% of
infections in young children who were infected
when they were infants develop into chronic hep-
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atitis B [9]. People with acute hepatitis B can present with nausea, abdominal pain, and jaundice.
However, they may also be asymptomatic—especially when they are infants and children [10].
Transmission
HBV is transmitted through contact with tissues deeper than the skin of an uninfected person
with infectious blood or body fluids. Examples of
contagious events include sexual intercourse with
infected persons, intravenous use with an infected
needle, and childbirth from an HBV-positive mother. HBV can also be transmitted through sharing
semi-invasive utensils such as over-filing at nail salons [22].
HBV is transmitted horizontally through sexual contact, blood transfusion, medical utensils, and
personal-use objects like razors and toothbrushes
[10]. For Pacific-Asian people, transmission most commonly occurs vertically from a mother to their baby
at childbirth or is acquired at a young age [10] [16].
Vertical transmission can occur both through the placenta and during the act of childbirth [23]. Overall, the
risk for transmission to family members is high [24].
Screening
HBV screening is recommended for people
of all walks of life, particularly all pregnant people
Table 2. Additional
Uses of HBV Antivirals. From University
of Washington [51]:
“Antiviral Agents with
Activity Against HBV
and HIV”.
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Hepatitis B Interventions in East- and Southeast-Asian Communities in the U.S.
and foreign-born people from areas endemic with
hepatitis B [10]. Hepatitis B screening and diagnosis can lead HBV+ people to receive antiviral therapies and decrease their chances of developing HCC
[9]. However, physicians who serve Pacific-Asian
communities have reported reluctance to conduct
HBV screening because their patients may be culturally or financially prevented from seeking treatment [11]. A survey of Chinese females in Seattle
found that only 35% had been screened for HBV,
though they are part of a high-risk population [6].
Ma et al. completed a study in which they surveyed
over 2,000 Pacific-Asians from the East Coast. They
found that those who believed they had agency to
prevent cancer and those who used the internet
are more likely to get screened for hepatitis B [25].
This study demonstrates that prevention awareness
leads people to seek HBV screening. Furthermore,
a study of Asian versus white American patients in
San Francisco demonstrated that in most instances,
Asian ethnic groups are significantly more likely to
be screened for HBV. The figures show that 65%
of Chinese-speaking Chinese patients are screened,
while only 21% of white Americans are screened [6].
Though it seems as if this discrepancy is a positive
indicator with at-risk communities being screened
more than others, it still follows that this is not a rate
of 100% and that Chinese-speaking patients for the
most part are not screened enough.
HBV can be prevented with a vaccination.
HBV vaccination is universally recommended in the
U.S. for children zero to eighteen-years-old, health
care workers, dialysis patients, people with multiple
sex partners, injection drug users, men who have sex
with men, and sexual/household partners of people
with hepatitis B. Interestingly, it is the only vaccination administered to newborns (compared with the
hepatitis A vaccine which can only be administered
to children when they are older than 12 months old)
since the virus can linger in newborns and manifest
in lifelong chronic illness [26]. The vaccine has a 95%
prevention efficacy rate [27].
The low rate of Asian American vaccination
is due to particular barriers. One study gathered information from a diverse group of Asian Americans
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Alizarin Menninga
that showed that few family members encouraged
one another to get vaccinated or tested [28]. Another
study proposed that barriers to vaccination among
Chinese in New York City included not having the
time to seek vaccinations, not knowing where to
get screened, not having a primary care provider,
and not speaking the same language as their physician [29]. However, a study of Chinese Americans
in Chicago found that nearly all respondents understood that HBV is preventable by vaccination, and
having a primary care physician led Chinese patients to have higher rates of vaccination [18] [29].
Treatment
Ninety-five percent of infected adults and
older children can become hepatitis B-immune after clearing the infection from their system without
treatment [9]. Those who do not clear the virus after six or more months of acute hepatitis B develop
chronic hepatitis B, an incurable condition. However,
there are pharmaceutical treatments that slow viral
replication and thus disease progression, including
Interferon-alpha, Lamivudine, and Adefovir dipivoxil. Antiviral treatments suppress HBV and reduce
hepatic inflammatory response in HCC as well as
necroinflammatory activity in CHB. Lowering the
quantity of virus in an infected person’s system can
prevent cirrhosis, liver failure, and HCC [35] [13].
Clearing detectable HBsAg and/or seroconversion is the closest to a cure that currently exists
in the treatment of hepatitis B [30]. Currently, there
are seven different FDA-approved antivirals to treat
CHB [31]. These antivirals are interferon-alpha, pegylated interferon-alpha, lamivudine, adefovir (dipivoxil), entecavir, telbivudine and tenofovir (disoproxil
fumarate) (Table 2) [47]. These antiviral treatments,
however, are prescribed to fewer than 50,000 people per year, or less than 2.5% of estimated cases
in the U.S. [14]. Long-term entecavir treatment has
shown improved liver histology in Asian American
patients [32]. Both entecavir and tenofovir could be
effective medications for “Asians” because of their
low reported side effects—including liver disease
development—and high safety ratings, but due to
their underutilized nature, they are not supplied as
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Hepatitis B Interventions in East- and Southeast-Asian Communities in the U.S.
often as they should be [33].
Another antiviral treatment is lamivudine.
This is an oral antiviral treatment that suppresses
the virus, reduces necroinflammatory activity, and
improves liver fibrosis histology and liver function
[13]. Side effects such as viral resistance can develop from lamivudine use. Hepatitis flares can arise
resulting in liver failure and death, and decrease in
liver function leading to decompensation or cirrhosis [13].
Like most viruses, there are practice guidelines that determine a subset of patients who can
receive treatment for CHB. This group of people
generally includes those with biochemical and histological markers of moderate to severe liver disease
[34]. However, official guidelines are changing as
people with higher potential risk factors become increasingly illuminated through research. Additionally, people whose infections progress rapidly can be
eligible for treatment [14]. Even given the changes
to the scope of those treated, Pacific-Asian people
who are not fluent in English have a lower chance
of receiving adequate treatment [6]. Pacific-Asian
patients have barriers beyond language, including
financial cost and reported side effects (liver and
bone-density damage) when given the treatment
[16]. Consequently, HBV+ Asian Americans who are
English speakers and thus can better communicate
with their physicians to learn about effective antiviral treatment often do not utilize the service because of their fears of the treatments’ side effects
[16]. Although both of these groups have similar
concerns, there are also discrepancies in treatment
of foreign-born and U.S.-born Asian people in the
U.S. Carabez et al. performed a study showing that
70% of U.S.-born HBV+ respondents were receiving
treatment, with 90% having received prior treatment.
Less than 40% of foreign-born HBV-infected Pacific-Asians of the same study were receiving treatment
at the time of survey, and only 50% had received past
treatment [28]. Additionally, health care providers reported immunizing and screening people who could
afford the cost of care, at the risk of missing HBV+
people who could not afford all screening tests [22].
Alizarin Menninga
Cultural Responses
There are no studies that look at disparities
in initiation of antiviral therapy and therapy completion in HBV+ Pacific-Asians or Asian Americans [28].
However, surveyed health practitioners reported a
list of cultural reasonings that affect treatment for
Pacific-Asian and Asian Americans. First, a Hwang
et al. study of Chinese, Korean, and Vietnamese
communities in Houston noted doubts about Pacific-Asians following through with their prescribed
HBV treatments [22]. Some Pacific-Asian patients
have been reported to not return to a clinic after
being diagnosed with HBV, as they do not always
understand what the doctor is telling them about
hepatitis [22]. However, their choice not to return
to their physicians may stem from their reluctance
to disagree or argue with a physician. This can result in them not taking medications as prescribed
[25]. Secondly, in a study of Vietnamese people in
Seattle to identify Vietnamese cultural, historical,
and sociopolitical contexts for knowledge of HBV,
Burke et al. situated Vietnamese communities’ understandings in histories of arriving in the U.S. as
refugees and receiving much poorer health-care
than white Americans [48]. Participants stated beliefs linking energy balance to good health, and thus
imbalance to susceptibility to liver illness. Many respondents also associated diet, strength, blood and
energy circulation, and peace of mind with internal
disorder-prevention including liver disease.
Finally, complementary and alternative
medicine (CAM) is an important cultural factor
that determines treatment adherence and efficacy. These practices include acupuncture, vitamins,
energy medicine, and herbs. Medical practitioners
that serve Pacific-Asian communities observed
that their patients are not able to afford antiviral
treatment for HBV, but that CAM is inexpensive,
available, and culturally sanctioned [22]. Though
physicians have been known to be wary of CAM,
believing that some may interfere with allopathic
treatments, some feel they must show respect for
CAM to validate their patients’ cultural backgrounds
and beliefs. Even when CAM was not prescribed,
Tokes et al. found that Chinese, Korean, and Viet-
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Hepatitis B Interventions in East- and Southeast-Asian Communities in the U.S.
namese communities of New York metropolitan,
San Francisco/Bay, and Los Angeles/Orange County areas reported treating their CHB with lifestyle
and diet changes because of the fear of possible
side effects from pharmaceutical treatments [16].
Though 88% of their respondents understood that
CHB could cause liver damage, over a third stated reluctance to being on long-term pharmaceutical therapy due to concerned over side effects.
Stigma
There is a stigma associated with HBV that
stems from white supremacy, xenophobia, and
essentialization. Stigma has been defined as “an
adverse social judgment resulting in exclusion, rejection, blame or devaluation. Stigma can damage
self-esteem, adversely affect family members and
social and economic status, and can lead to discrimination and self-discrimination” [36]. People who are
stigmatized in any way are generally disempowered
from defending themselves. Power structures that
dictate norms in our society use stigmatized differences to render people with these differences lesser in value [37]. Thus, any resistance against stigma
is a form of resistance against the power structures
that create hierarchies of worth.
Lai et al.’s study found that medical health
professionals incorrectly associated HBV with
HIV+ people, men who have sex with men, and intravenous drug users—even when they knew that
people from China are at greater risk than white
Americans for contracting HBV [6]. These different
assumptions that are related only because they are
elevated risk statuses for HBV inherently associate
Chinese people with traits that are stigmatized in
both U.S. and Chinese society, and further essentialize Chinese (and other East Asian peoples who are
often confused with Chinese) people with societally-deemed deviant behavior. Specifically concerning
higher-risk communities of color, like Pacific-Asians
in the United States, breaking the stigma is a step
against racial oppression and xenophobia. There is a
high mental stress burden for individuals with HBV,
no doubt contributable in part to community stigma
[38].
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Within the Asian American community, stigma surrounding HBV has been generated by fear of
contagion. Over 60% of surveyed Chinese Americans in Chicago believed that HBV carriers put others at risk and should subsequently avoid contact
with others [18]. Over a third of Chinese American
respondents stated that HBV carriers perceive that
they bring trouble to their families, and a fifth of respondents believed HBV carriers may bring harm to
others [18]. Additionally, over 20% of respondents in
the same study indicated that HBV carriers may be
discriminated against in professional and academic
settings both in China and in the U.S. [18]. A study of
HBV+ university students in Taiwan demonstrated
that 70% of survey respondents were afraid to tell
their friends that they were carriers [39]. About 70%
were also afraid of contracting HBV from a friend
carrier [18]. A survey of HBV+ Chinese immigrants
in Canada found that about a third were ashamed
about having HBV, and over half would not discuss
their infection with family and friends [40].
Stigma is lowered by increased knowledge
of HBV, and being more familiar with HBV [18].
Researchers have found that people with a family
member who is HBV-positive have fewer negative
perceptions and fears of HBV contagion [18]. Understanding of stigma and fears can help determine
appropriate interventions and educational tools to
alleviate HBV-related stigma [18]. Furthermore, stigma on the end of doctors and on the side of Asian
American patients themselves needs to combatted.
By disclosing HBV statuses, fear of spreading HBV
could be erased and the stigma could be overcome
[18].
Misinterpretation of HBV is attached to this
stigma. Many researchers have studied the myths
surrounding HBV in Pacific-Asian communities in
the U.S. to point toward potential knowledge interventions in these high-prevalence groups. One of
the studies led by Ma et al. found that only 23% of
Vietnamese people in Philadelphia and New Jersey
understood HBV could be spread through sexual intercourse. Meanwhile, another study by Lee et al.
found that only 19% of their sample of Korean immigrants in the Rocky Mountain area understood
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Hepatitis B Interventions in East- and Southeast-Asian Communities in the U.S.
this mode of transmissibility [44] [45]. On the contrast, Coronado et al. conducted a study with Chinese people in Seattle which found that 65% of their
respondees knew that HBV was preventable by vaccination, while a full 95% of the Chinese in Chicago
that Cotler et al. surveyed understood this means of
prevention [46] [18]. Similarly, only 38% of Chinese
respondents in Seattle knew that HBV is a lifelong
affliction, while 75% of surveyed Chinese in Chicago understood that HBV is a chronic infection.
Carabez et al. backed up previous studies by
showing that gaps in information about contracting,
transmitting, chronic infection, and prevention of
HBV were high for foreign-born Pacific-Asians. For
example, many do not know the difference between
HCV and HBV [28]. In a survey of low-income Chinese Americans in New York City, the majority of respondents did not know that HBV could be transmitted through sexual intercourse [18]. In a survey of
Chinese Americans in Chicago, researchers found
that the majority believed hepatitis B could be spread
through food or eating utensils, which is untrue [18]
(Table 1). In the same study, however, nearly all participants understood that HBV could be spread by
blood and in the process of childbirth. This discrepancy demonstrates that some modes of transmission
are more commonly known than others, and that
many do not understand HBV transmission routes
well [18]. Though these misconceptions may be exemplary of white Americans as well as Asians, the U.S.
Figure 3. San Francisco Hep B Free 2008-2009
outreach campaign billboard. Taken from Yoo
et al. [42]: A demonstration of the effectiveness of
campaigns in non-English languages.
Alizarin Menninga
as a whole suffers only 0.1% HBV prevalence. Asians
in the U.S. on the other hand embody much higher
rates, like Vietnamese American adults who suffer
up to 14% prevalence of chronic hepatitis B [48].
Education and Resources for HBV+ Individuals
There is not enough awareness on HBV as
it specifically affects Asian Americans, giving rise
to a need to educate on the virus. The Hepatitis B
Foundation exemplifies this need through publishing
personal narratives of experiences with HBV. In one
of their examples, a young “Asian American” doctor knew he was hepatitis B positive though asymptomatic [41]. When tested, medical professionals assessed, due to lack of knowledge, that their patient
would not have to be screened for liver cancer until
he reached middle aged. “Asians,” the author broadly states, have a much greater risk of developing liver cancer because they are often infected early on
in life. People infected early in life will manifest the
cancer when the person is about 30 years of age.
The medical practitioners based their knowledge on
statistical experiences of white Americans, but people whose parents are Asian immigrants are at disproportionately greater risk than people of European descent. This doctor died from liver disease in his
early 30s because of his own and others’ unawareness of differences in the manifestation of hepatitis
B and its development into cancer for white people
and Asian-descended people.
One way to strengthen the knowledge
around this disease is through education. As demonstrated in Cotler’s survey, Chinese Americans with
higher education levels (i.e. high school graduates)
and who spoke better English had a better understanding of HBV [18]. Younger respondents also
were positively associated with having a greater
understanding of HBV [18]. Information, education,
and support could come from health care providers in a unique position to inform patients of follow-up steps once they test positive for HBV [28].
Furthermore, educational campaigns launched
through Asian-targeted community and media venues such as Asian-language newspapers, churches
and temples, and TV and radio stations are crit-
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Hepatitis B Interventions in East- and Southeast-Asian Communities in the U.S.
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ical to developing culturally appropriate education and community buy-in to HBV education [22].
Physicians
The role of a physician is important in teaching about HBV. Health care providers who have a
better understanding of HBV generally have higher
rates of screening their Chinese patients for HBV
[6]. However, some physicians are unclear about disease transmission among higher risk groups, HBV’s
natural history, its risk factors, and interpreting test
results. Hwang et al. recommend continuing medical education to address these informational gaps
[22]. For example, in a study of medical health practitioners in San Francisco, a full 30% of survey respondents did not report conducting the correct
test to screen for HBV (HBsAg blood test for this
antigen to the virus) [6].
Liver specialists, acupuncturists, gastroenterology physicians, hepatology internal medicine,
family practice, and OB/GYNs all play a similar role
in HBV-related diagnosis, treatment, and care for Pacific-Asians and Asian Americans [22]. Pacific-Asian
physicians are essential to providing HBV-outreach,
education, and advocacy to communities of Asians
in the U.S. [22]. Providers who speak an Asian language also have higher rates of screening their
Asian patients for HBV. Their shared background
contributes to their understanding of the greater
risk for HBV [6].
Language barriers between physicians and
their Pacific-Asian patients must be broken down
in order to educate about screening for the virus
and treating/living with the virus. Without this step
there could be an increase HBV prevalence [22].
Primary care physicians that serve Pacific-Asian
and Asian American communities must also take
patients’ concerns about side effects into account
when counseling them on HBV treatment, comparing the medications’ side effects with the possibly life-threatening long-term risks of CHB [16].
Community-Based Approach
Targeted campaigns to screen and vaccinate Pacific-Asians and Asian Americans against
10
Figure 4. Effective strategies for health
intervention. Lower-class, non-white communities
need health interventions carried out in distinct ways
from higher-class white communities. Addressing
these differences in needs will alter future health
interventions and assumptions about hepatitis B.
HBV, in partnership with local health departments,
hospitals, and community organizations, could decrease the HBV burden in Pacific-Asian and Asian
American communities. Community-based screening reaches low-income and not formally- or classroom-educated communities, people without health
insurance, people who otherwise must surpass barriers to health care providers and health systems,
and non-English speaking communities (Figure 3)
[9]. Community-based screening implemented in
communities with prevalent disease stigma bypasses the usual inaccessibility of health care systems’
preventative measures [9]. The community-based
screening measures followed in a study conducted
by Robotin et al. included effective community engagement, targeted cultural values, and low-cost or
free follow-up and antiviral treatment for diagnosed
HBV+ people. An example of such is the San Francisco Hep B Free (SFHBF) campaign.
The goals of SFHBF included generating
awareness among health professionals of importance about testing and vaccinating Pacific-Asians
and -descended people against HBV, encouraging
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Hepatitis B Interventions in East- and Southeast-Asian Communities in the U.S.
primary care providers to conduct regular testing
and vaccination for HBV, and guaranteeing treatment for people with CHB [42]. This campaign included media strategies which encouraged Pacific-Asians and Asian Americans to screen, vaccinate,
and treat hep B as well as to teach and garner support from mainstream society and institutions on
HBV [42]. The SFHBF campaign ran on volunteer
contributions, narrative communication about HBV,
and culturally relevant outreach to Asian communities in the U.S. [42]. In this way, the SFHBF campaign
successfully transformed HBV from stigmatized
and taboo to a community-wide health and wellness cause [42]. Through work in the media, SFHBF
helped to alter HBV associations from misconduct
(sexual or including drug use) and “bad people” to
focus on medical discourse and social empowerment to affect change [42]. The campaign achieved
its aims through collecting personal narratives of
HBV from public figures like California Assemblywoman Fiona Ma and news anchor Alan Wang [42].
Importantly, SFHBF focused on prevention, encouraged collective action, and respected the diversity
of Asian American community and cultures [42].
Alizarin Menninga
HBV based on the protection of only one class of
people, immigrants and non-native English speakers—though they most need the interventions—are
marginalized and do not achieve the proper interventions for hepatitis B.
Writing on disease exclusivity and stigma,
Parker et al. state that “the individual framework with
which [intervention research focusing on HIV and
AIDS-related stigmatization] operates is simply alien
to perhaps the majority of the world’s cultures” [37].
This prescription of middle-class white American
norms on all research subjects undoubtedly distorts
and skews the goals and possible interventions that
medicine could take towards community healing.
Parker et al.’s critique is calling out white supremacy
without naming it. By naming it here, I hope to begin an intersectional dialogue on how to best treat
non-upper-middle class, white, cis-gendered, English-speaking, able-bodied, heterosexual men (the
dominant group in our society and world) as well as
inspire truly community-based surveys that include
narratives and testimony from affected communities on how they can be best treated.
Conclusion
Throughout this paper I assert that routine
screening of all Pacific-Asians and Asian Americans
for HBV is an indispensable measure toward fighting CHB and HCC [43]. In doing so, Asian-descended
people in the U.S. must be assessed on their health
history on an individual national origin basis. Groups
must be treated as hailing from different places and
distinct cultures. Additionally, conducting a national
study of how financial barriers affect screening and
treatment of HBV of Pacific-Asian and Asian American patients could affect health policy changes to
devote more resources to meeting the guidelines
ascribed to these high-risk groups [22] [10]. To complement screening with teaching, physicians’ treating HBV+ patients must become more educated on
the nuances of this virus.
It is a problem that treatment and vaccination are presented and created for white Americans with class-privileged backgrounds. Addressing
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Alizarin Menninga
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