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COMMENTARY
Eradication of Hepatitis B: A Nationwide Community CoalitionApproach to Improving Vaccination, Screening, and Linkageto Care
Chari Cohen • Jeffrey Caballero • Melinda Martin •
Isha Weerasinghe • Michelle Ninde •
Joan Block
� Springer Science+Business Media New York 2013
Abstract Infection with the hepatitis B virus (HBV) is a
significant public health concern in the US, disproportionately
affecting Americans of Asian, Native Hawaiian and Pacific
Islander descent, despite the availability of a simple blood test,
approved treatments, and an effective vaccine. Hep B United,
a national campaign to support and leverage the success of
community-based HBV coalitions, convened a partner sum-
mit in 2012 to develop a strategic response to the HHS Action
Plan for the Prevention, Care, and Treatment of Viral Hep-
atitis. The resulting community action plan focuses on
advancing three areas of the HHS plan: educating providers
and communities to reduce health disparities; improving
testing and linkage to care to prevent HBV-related liver dis-
ease and cancer; and eliminating perinatal HBV transmission.
Keywords Hepatitis B virus � Asian Americans �Healthcare disparities � Hepatitis B vaccine � Community
health
Introduction
Infection with the hepatitis B virus (HBV) can lead to life-
long, chronic infection and serious liver damage. Without
appropriate treatment and monitoring, 15–25 % people with
chronic HBV infection will die prematurely from cirrhosis,
liver failure, or primary liver cancer (hepatocellular
carcinoma, HCC) [1, 2]. In fact, chronic HBV infection is the
leading cause of HCC worldwide. Fortunately, a simple
blood test for HBV is readily available, there is an effective
vaccine to prevent infection, and seven medications are
currently approved in the US for the treatment of chronic
HBV infection [3–6]. And yet:
• An estimated two million Americans are chronically
infected with HBV, with up to 40,000 new infections
each year [7–9].
• Almost two-thirds of those chronically infected are
unaware they have the virus because the infection can
persist without symptoms for decades [10].
• 1 in 12 Americans of Asian, Native Hawaiian and
Pacific Islander descent are chronically infected with
HBV and are disproportionately impacted by higher
rates of related liver cancer [11, 12].
• Screening for HBV in high-risk communities is not
routine, and many health care providers have limited
understanding of HBV prevention, testing, and treat-
ment [10, 12].
• Less than 10 % of patients who need treatment are
estimated to receive medication [13].
• Every year, up to 1,000 newborns in the US acquire
chronic HBV infection from their mothers at birth [10].
• The economic burden of HBV in the US is estimated to be
as high as $1 billion (total direct and indirect annual cost)
[14].
Increasing National Focus on Hepatitis B Infection
and Health Disparities
A landmark report published by the Institute of Medicine
(IOM) in 2010, highlighted viral hepatitis as an urgent
C. Cohen (&) � J. Block
Hepatitis B Foundation, 3805 Old Easton Road, Doylestown,
PA 18902, USA
e-mail: [email protected]
J. Caballero � M. Martin � I. Weerasinghe � M. Ninde
Association of Asian Pacific Community Health Organizations
(AAPCHO), Oakland, CA, USA
123
J Community Health
DOI 10.1007/s10900-013-9699-4
unmet medical need and recommended new policy, legis-
lative, community, and medical efforts to control HBV
infection [10]. In 2011, in response to the IOM report and
building upon the 2010 Patient Protection and Affordable
Care Act, the US Department of Health and Human Ser-
vices (HHS) released its Action Plan for the Prevention,
Care, and Treatment of Viral Hepatitis. As noted in the
plan, ‘‘HHS is committed to ensuring that new cases of
viral hepatitis are prevented and that persons who are
already infected are tested; informed about their infection;
and provided with counseling, care, and treatment.’’ [12
(p7)]. In addition, HHS Assistant Secretary for Health, Dr.
Howard Koh, has been working to raise awareness of the
disproportionate impact of HBV infection in Asian
American, and Native Hawaiian and Other Pacific Islander
(AA&NHOPI) communities [11]. Ongoing healthcare
system reforms (e.g., expanded insurance coverage) and
investments in health promotion, disease prevention, and
elimination of health disparities make this the ideal time to
focus on prevention and control of HBV infection, and to
work toward eradication.
The HHS Action Plan for the Prevention, Care,
and Treatment of Viral Hepatitis
The HHS National Viral Hepatitis Action Plan, or VHAP,
‘‘presents robust and dynamic steps for improving the
prevention of viral hepatitis and the care and treatment
provided to infected persons and for moving the nation
towards achieving Healthy People 2020 goals.’’ [12 (p57)].
The VHAP is organized into six topic areas:‘‘(1) educating
providers and communities to reduce health disparities; (2)
improving testing, care, and treatment to prevent liver
disease and cancer; (3) strengthening surveillance to detect
viral hepatitis transmission and disease; (4) eliminating
transmission of vaccine-preventable viral hepatitis; (5)
reducing viral hepatitis caused by drug-use behaviors; and
(6) protecting patients and workers from health-care asso-
ciated viral hepatitis.’’ [12 (p8)]. For hepatitis B specifi-
cally, HHS suggests that full implementation of the VHAP
could result in doubling the number of individuals who
know their HBV status (from 33 to 66 %, VHAP Goal 1.2),
and elimination of perinatal transmission of HBV (VHAP
Goal 4.1) [12].
Hep B United: Community Coalitions Working
Together for National Impact
In May of 2012, the Hepatitis B Foundation and the
Association of Asian Pacific Community Health Organi-
zations (AAPCHO), with the support of the HHS Office of
Minority Health (OMH), launched a new national cam-
paign, Hep B United. This campaign is comprised of a
national network of community-based coalitions across the
country that seek to raise awareness about hepatitis B,
promote screening, vaccination, and follow-up care, and
ultimately eliminate HBV, especially among high-risk
AA&NHOPI populations in the U.S.
The first Hep B United National Summit was held August
7–8, 2012 at the Hepatitis B Foundation’s headquarters in
Doylestown, PA. The goal of the summit was to develop a
national community-based response for addressing and
advancing the VHAP at the local level. Under the umbrella of
the Hep B United campaign, leaders from community-based
coalitions from across the country gathered to identify pri-
ority activities and share promising best practices for
addressing the public health challenge of HBV infection in
AA&NHOPI populations. To develop the national commu-
nity-based action plan, summit participants broke into
working groups to define objectives, activities, and progress
measures to help communities achieve goals in three of the
priority areas of the VHAP that are particularly relevant to
AA&NHOPI populations: educating providers and com-
munities to reduce health disparities (VHAP Goals 1.1 and
1.2); improving testing and linkage to care to prevent hepa-
titis-B-related liver disease and cancer (VHAP Goals 2.1 and
2.2); and eliminating perinatal transmission of hepatitis B
(VHAP Goal 4.1).
The following sections provide highlights of the Hep B
United Summit discussions on these three areas of the
VHAP, especially as they relate to AA&NHOPI popula-
tions, and the community action plan goals and objectives
developed by summit participants.
At Risk and Unaware: Educating Providers
and Communities
Very simply, the first step toward receiving care and treat-
ment is knowing that you have a condition that needs
attention [12]. Community-based coalitions and campaigns
can play an important role in educating people about the
vital importance of knowing their HBV status. Summit
participants discussed the challenges of reaching out to
AA&NHOPI communities, including the need for culturally
competent educational materials developed in the language
of the target audience. It was noted that many relevant
campaign materials and free viral hepatitis education
resources are already available through the CDC Division of
Viral Hepatitis and National Prevention Information Net-
work (NPIN, see http://www.cdcnpin.org/scripts/hepatitis/
index.asp); however, more evidence-based and community-
tested materials are needed, particularly in AA&NHOPI
primary languages.
Currently, routine screening at the primary care level
remains low, due to a number of provider-related barriers
J Community Health
123
(e.g. knowledge, financial, language, cultural competency)
[15–18]. Providers need to be educated that failing to
routinely screen for HBV among high-risk populations is a
missed opportunity for prevention of serious liver disease
and cancer (i.e., diagnosis of HBV infection when the
patient presents with cirrhosis or liver cancer is often too
late) [14]. As many high-risk communities do not have
access to liver specialists, primary care providers need to
be able to address HBV prevention and screening, as well
as monitoring for disease progression, and management of
treatment if needed. Multiple studies indicate that active
screening and early treatment and management reduces
morbidity and mortality and is also cost-effective [19–21].
Summit participants developed the following national
community action plan goals and objectives to help com-
munity-based coalitions achieve VHAP Goals 1.1 and 1.2
on educating providers and communities to reduce health
disparities.
Community Education Goal Increase the number of
people in AA&NHOPI communities who know their HBV
status.
Community Objectives
• Increase community knowledge about HBV; the ben-
efits of testing and treatment; HBV and liver cancer;
and vaccination as a key prevention strategy.
• Increase consumer demand for HBV testing.
• Decrease community stigma and discrimination asso-
ciated with hepatitis B.
Provider Education Goal Increase the proportion of
providers who routinely screen their AA&NHOPI patients
for HBV.
Community Objectives
• Increase basic knowledge about HBV among providers;
enhance awareness of available HBV provider-focused
education materials.
• Develop and advocate for national quality measures;
advocate for the Bureau of Primary Health Care at the
Health Resources and Services Administration (HRSA)
to include screening requirements for providers.
• Identify and promote use of Electronic Medical Record
Tools and Meaningful Use requirements, and other
office-based strategies and systems (e.g., standing
orders for HBV screening, front desk inquiries about
screening status).
Knowing is Not Enough: Testing and Linkage to Care
Even when there is consumer demand for screening, and
providers who are willing to screen, barriers persist.
Summit participants identified transportation to and from
the screening site as a significant barrier for many people in
AA&NHOPI communities. Even if transportation is pro-
vided, it was noted that many people are hesitant to travel
beyond their community borders. Those who are screened
and test positive for HBV may not have insurance to cover
follow-up care. In some places, the issue is not lack of
insurance, but a lack of providers willing or able to manage
patients with hepatitis B infection. Summit participants
shared case examples where county health officials and
clinics had the resources available to conduct HBV
screening, but did not do so because they had no place to
refer people to if they tested positive. Community-based
coalitions can serve as a trusted coordinator of services and
resources to help people gain access to screening, vacci-
nation, and care (e.g., develop patient navigation tools or
transportation programs, catalog local resources and recruit
new partners).
Summit participants developed the following national
community action goals and objectives to help community-
based coalitions achieve VHAP Goals 2.1 and 2.2 on
improving testing and linkage to care to prevent HBV-
related liver disease and cancer.
HBV Screening Goal Increase the number of individ-
uals in high-risk AA&NHOPI communities who know
their HBV status.
Community Objectives
• Double the number of community-based screenings
and/or the number of sustainable screening sites (e.g.,
clinics, community based organizations, provider offi-
ces, health systems).
• Share promising best practices among local coalitions
across the U.S.
• Develop peer-to-peer technical assistance and mentor-
ing programs for local coalitions.
• Increase activities related to Hep B United’s national
priorities at the local level.
Linkage to Care Goal Provide opportunities for all
HBV-infected and susceptible individuals to access clinical
care, management, and vaccinations.
Community Objectives
• Increase by 20 % the number of HBV-infected indi-
viduals who are able to access sustainable and appro-
priate care.
• Decrease barriers to care.
• Educate people living with chronic HBV infection
about the importance of regular monitoring and care.
• Increase the number of HBV-susceptible individuals
who complete the HBV vaccine series.
• Advocate for broader allocation of funding for adult
HBV vaccination under Section 317 of the Public
Health Services Act.
J Community Health
123
• Share promising best practices for improving vaccine
series completion rates.
At Risk from Day One: Eliminating Perinatal HBV
Transmission
Despite long-standing recommendations for HBV screen-
ing of pregnant women and HBV vaccination of infants at
birth, nearly 1,000 babies born in the U.S. every year
acquire HBV infection at birth from an infected mother
(perinatal transmission) [10, 22]. These infants are the
most vulnerable to developing chronic HBV infection,
and up to 25 % of those infected at birth will die pre-
maturely from HBV-related disease later in life [23].
There are many potential causes of perinatal transmission
of hepatitis B [24]. Not all pregnant women receive
prenatal care or deliver in a hospital, so they may not be
tested. Some women are screened, but are not appropri-
ately monitored or treated if positive for HBV, often due
to a breakdown in reporting procedures or lack of clinical
follow-up [25]. Infants born to HBV-positive mothers
may not have received the birth dose of vaccine and
hepatitis B immune globulin within 12–24 h of birth.
Education of all HBV-infected women (and their house-
hold contacts), and those providing care to pregnant
women, is paramount. Participants discussed the need for
standing orders for HBV testing and prophylaxis at all
birth hospital and clinics, and the need for outreach
through other community organizations that serve
AA&NHOPI communities, and women in particular.
Local perinatal coordinators are essential partners in
community-based efforts to reach out to HBV-infected
pregnant women and their households.
Summit participants developed the following commu-
nity action objectives to help community-based coalitions
achieve VHAP Goal 4.1 on eliminating perinatal trans-
mission of hepatitis B.
Prevention Goal Eliminate perinatal transmission of
HBV
Community Objectives
• Build partnerships with perinatal coordinators and
educate them about perinatal HBV transmission.
• Increase the education of all HBV-infected women
about the potential for perinatal HBV transmission.
• Provide appropriate case management for HBV-
infected pregnant women, including referring them
for care during and after delivery.
• Raise awareness of perinatal HBV transmission among
women’s AA&NHOPI health organizations and med-
ical societies.
Overarching Challenges
Over the course of the Hep B United summit, participants
identified a variety of challenges to be addressed in meet-
ing the goals of the VHAP. In particular, participants
emphasized the challenges of overcoming knowledge,
language, and cultural barriers, and ensuring funding and
sustainability of programs and effort.
Knowledge, Language, and Cultural Barriers
Simply translating existing English language HBV educa-
tional materials into other languages does not convey
knowledge effectively to other cultures. Misinformation,
stigma, and discrimination associated with HBV persist
[26, 27]. Participants stressed that materials need to be
developed by native speakers familiar with the nuances of
the culture and language. Someone who tests positive for
HBV infection needs to learn not only how to live with it,
but also how to talk to their family members about HBV
and how to encourage them to be screened, and vaccinated
if needed. Although the VHAP does not specifically
address stigma, participants felt that local community
education objectives should also target stigma and dis-
crimination experienced by HBV-infected individuals.
Participants discussed the potential role of community
health workers in helping to address cultural competency
and language barriers, particularly with the implementation
of the Affordable Care Act, and the importance of imple-
menting cultural competence curricula for providers.
Despite the risk of liver cancer from HBV, there is still
much more public concern about diabetes and heart dis-
ease, and summit participants suggested that offering HBV
screening along with heart disease or diabetes screening
may help facilitate testing of those who are hesitant to
bring themselves or family members to an HBV screening
event. It was also noted that many who test positive for
HBV do not go for follow-up care, even if it is free,
because they are not ‘‘sick.’’
Funding and Sustainability
In a difficult economy, resources for training and education
are often the first to be cut. This can further increase health
disparities because community-based organizations do not
have the staff for grant writing, fundraising, and evaluation.
Summit participants stressed the need to better utilize
federal programs and resources at the local level, and to
strengthen coalition partnerships with federal agencies.
One approach to stretch limited resources is by working
with other organizations serving the same populations (e.g.,
HBV information could be provided in immigration and
J Community Health
123
naturalization classes). Another approach is cataloging
which coalition members can provide in-kind support (e.g.,
educational materials, technology) and engaging non-tra-
ditional partners that may have resources to share (e.g., a
venue for screening, distribution of materials). Sustain-
ability of effort is also an issue, and coalitions can play a
key role in building trust and maintaining momentum in
their local communities.
Concerns were also raised about the allocation of funds
for adult HBV vaccination under Section 317 of the Public
Health Services Act, and limited or unreliable funding for
vaccination was linked to the lack of educational cam-
paigns focused on vaccination.
Realizing a Future Without Hepatitis B
Hepatitis B is a disease that can be eradicated in the USA
vaccine for the prevention of HBV infection has been
available in the US since 1982, and CDC recommends
HBV vaccination of all newborns at birth, all children and
adolescents who were not vaccinated at birth, and all at-
risk adults (see CDC recommendations for further discus-
sion of at risk groups) [5, 6]. Despite the broad success of
immunization in decreasing the incidence of HBV infec-
tion, millions of Americans remain unprotected. Worse, up
to 2 million Americans are chronically infected, the
majority do not know it, and many of those that do know
their HBV-positive status are not receiving appropriate
care. Surveillance systems tracking viral hepatitis
throughout the US have not been adequate, and many
national surveys do not track the level of race/ethnicity
granularity needed to generate accurate prevalence esti-
mates. Many of those at risk or chronically infected are
first-generation Americans born outside the US in countries
where HBV is endemic. In the US, AA&NHOPI commu-
nities are disproportionately impacted by chronic HBV
infection and liver cancer.
Building upon the current national focus on prevention
and treatment of viral hepatitis, the Hep B United com-
munity action plan is designed to be a national resource for
local HBV coalitions across the country as they strive to
meet the health needs of their communities and eliminate
HBV-related health disparities. Together, Hep B United
and its local coalition partners across the US will continue
working to: raise the profile of hepatitis B and liver cancer
as an urgent public health priority; increase hepatitis B
testing and vaccination, particularly among AA&NOHPI
and other at-risk communities in the US; and improve
access to care and treatment for individuals living with
hepatitis B to prevent end-stage liver disease and liver
cancer.
There is much to be done, and Hep B United coalition
partners are continuing to discuss potential tactics strate-
gies for achieving their national goals and objectives at the
local level, and defining measures of progress. Educational
resources, links to local coalitions, and information on join-
ing the national campaign can be obtained at hepbunited.
org. Through a unified, strategic approach, local hepatitis B
coalitions across the country can work together to achieve a
measurable national impact on the eradication of hepatitis
B and liver cancer.
Acknowledgments The recommendations contained in this article
stem from the first Hep B United National Summit, hosted by the
Hepatitis B Foundation and AAPCHO, and funded in part by a grant
from the HHS Office of Minority Health. The authors thank the
community coalitions, non-profit organizations, and federal partners
who participated in the summit and contributed to the development of
the action plan: Carol Brosgart, MD, Viral Hepatitis Action Coalition,
CDC; Kuan-Lung Daniel Chen, MPH, CPH, Hepatitis B Foundation;
Moon Chen, PhD, MPH, Asian American Network for Cancer
Awareness Research and Training; Shane Chen, Asian American
Health Coalition/Hope Clinic; Ryan Clary, National Viral Hepatitis
Roundtable; Molli Conti, Hepatitis B Foundation; Corinna Dan, RN,
MPH, Office of HIV/AIDS, HHS; Doan Dao, MD, Dallas-Fort Worth
Hep B Free; Karen Jiobu, Ohio Asian American Health Coalition;
Cynthia Jorgensen, DrPH, National Center for HIV, Viral Hepatitis,
STD and TB Prevention, CDC; Sophie Kwon, HHS Office of
Minority Health; Hong Liu, PhD, Midwest Asian Health Association;
Heather Lusk, The CHOW Project and Hep Free Hawaii; Kate
Moraras, MPH, White House Initiative on Asian Americans and
Pacific Islanders; Kim Nguyen, MSW, Hepatitis B Coalition of WA/
Within Reach; Jane Pan, Hepatitis B Initiative-DC; Su Wang, MD,
MPH, Charles B. Wang Community Health Center; Aurora Wong,
Las Vegas Hep B Free. Assistance with preparation of the manuscript
was provided by Theresa Wizemann, PhD, of Wizemann Scientific
Communications, LLC, under contract with the Hepatitis B
Foundation.
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