Hepatitis in Communities of Color: Strategies and Best Practices

Hepatitis in Communities of Color: Strategies and Best Practices


LUIS: Good afternoon,
and welcome, everyone. My name is Luis
Delancey of the National
Health [cross talk]. MICHELLE: Luis, just one moment. We are about to begin recording. So if we can
start recording now. Go ahead, Luis. LUIS: Thanks, Michelle. Good afternoon,
and welcome, everyone. My name is Luis Delancey of the National Health IT Collaborative
for the Underserved, also known as the
NHIT Collaborative. I’m delighted that
you could join us for the “Hepatitis in
Communities of Color: Strategies and Best
Practices to Engage Consumers in Underserved Communities”
webinar, co-hosted with the HHS Office of Minority
Health Resource Center, the Georgetown Lombardi
Comprehensive Cancer Center, and the NHIT Collaborative. I also would like to
acknowledge that this week is National Health IT Week. We want to encourage you
to tweet about this webinar using the handle
#HepatitisAwarenessInitiative. Just a quick background
about our organization: The National
Health IT Collaborative is a private/public partnership
that was launched in 2008 [inaudible] the Office
of Minority Health at HHS and the National
Institute of Minority Health and Health Disparities and over 100
organizations and individuals. We collaborate with
national, regional and local organizations to focus on
[inaudible] health disparities through the use
of new technology. We work to amplify and
foster partnerships across all facets of
health and healthcare where there is a need
for underserved populations’ adoption, utilization,
education, outreach, workforce
development and training, and even policy
development and implementation. We have demonstrated
that when we bring together stakeholders
across sectors to attack the challenges
underserved communities face, we can have a positive
effect [inaudible] change. It is now an honor to introduce
Michelle Loosely. Michelle leads the Office of
Minority Health Resource Center, and she works tirelessly
to improve the health of racial and ethnic
minority populations through the development of
health policies and programs that will help
eliminate health disparities. Michelle? MICHELLE: Thank you, Luis. I, too, would like to
offer welcoming remarks. Everyone, we’re glad
that you could join us today to talk about
hepatitis in our communities. It’s so important
that we discuss hepatitis within all minority communities. And as you know, we’ve been
having a series of webinars to specifically
talk on various topics. This month’s
topic is, of course, working within your
communities itself. Our next webinar
will be later in October discussing hepatitis
within the Latino community. We are appreciative
of all the speakers who are with us today and for their great experience
in working with this disease in our communities. And I’ll turn the time back
over to Luis and our speakers to share their
information with you today. LUIS: Thank you, Michelle. Next slide, please. We should be on
the second slide. Today, we have a wide
range of experts on our panel. We will be talking about
how underserved communities are affected by hepatitis and the strategies and best
practices to engage consumers in underserved communities. It is now my honor
and a pleasure to welcome our first speaker,
Dr. Claudia Martorell. Dr. Martorell is an
infectious disease surgeon and clinical
investigator/researcher. She presently serves as the directing
principal investigator of the Research Institute in
Springfield, Massachusetts. Dr. Martorell, welcome. DR. MARTORELL: Okay, thank you. Good afternoon to
everyone and all the panelists. I’m going to do
the initial overview, identifying barriers to
engagement among people of color [inaudible] hepatitis B
in this hepatitis webinar, and then, after me, the
next panelist will be doing some presentations addressing
how to overcome barriers, Project ECHO. There will be some
information on best practices to engage consumers of color, and then some further
recommendations to build current trends and successes
in hepatitis evaluation and management, followed by an open discussion
and a basic final conclusion. So with that in
mind, the next slide — I will start giving all of
you an overview of hepatitis and what are the main
barriers in terms of engagement among people of color. And the initial slide — I do not see the
slide on the monitor, but the slide —
the next slide, please. Next slide. In terms of
hepatitis and barriers, I am in infectious disease,
and I do treat all infections, but what I treat the
most is HIV, hepatitis B and comorbid conditions
related to these infections. I have been a
clinical investigator in many of the medicines
that are available right now for both HIV and
hepatitis C in particular, and some of the hepatitis
B medications as well. And one of the important
things is to understand that people in
the United States — about 3.2 million of
those, really more than that — five to seven
million people are infected with hepatitis C, for example, and that is always higher than the 3.2 million
that it’s reported because many of the patients
that are underrepresented and minorities are not
being taken into account in terms of determining the
real incidence or prevalence of hepatitis C. And part of that is because
the underserved populations, for example, Hispanics and
blacks or African Americans — there are gaps in care
from access to care itself, insurance barriers, problems
with access to treatment and then problems with
the healthcare system, education barriers, provider
barriers and many others, which I will go over, and I think that one of the
important things to remember about hepatitis C is
that it is a curable disease. So when people get rid
of it, when they get cured, there is a
reduction of liver morbidity and overall mortality. The next slide
goes into barriers. And I think this is
an important slide, because you have the
health system barriers, the
socioeconomic factor barriers, therapy-related barriers,
condition-related factors and then
patient-related factors. And I think one of the important
ones is lack of access to diagnosis and to treatment. In many cases, due to
lack of insurance coverage, people that are uninsured — but also, insurance
does not necessarily approve current medications for
treatment of hepatitis B, and one that I
would like to mention is mistrust of the
healthcare professionals. A lot of the
minority populations, because of different
historic experiences — there is a mistrust in
the healthcare system, in the government, in
providers, in pharmaceuticals that does have an
impact on access to care and adequate treatment. In terms of hepatitis,
not everyone has symptoms of hepatitis, so that may be a reason
why patients may not think that they should get treated. And one of the things that
is important to always mention is that it is a curable disease and that it may cause
liver and non-liver morbidity and mortality. In terms of other
patient-related factors, substance abuse
disorder, which is very common in minority populations, lack of belief in treatment, patients’ perception or
fear of adverse events — people still think
that the main treatment includes interferon, where now medications
do not include interferon. It’s oral-based regimens
with fewer side effects, higher cure rates and
less length of treatment. So education is a big issue. Fear of adverse events — people still
perceive that the medications cause significant side
effects, and that has changed. And then some other
things like unstable housing and homelessness, in the Hispanic
community, language barriers, and some of the
cultural barriers like religion and male-to-female interactions
in terms of the culture itself. The next slide — I
will just briefly mention that the black population with
chronic hepatitis C, for example — the prevalence of
hepatitis C is the highest in the black or
African American population, and the black
males have a higher risk of developing
hepatocellular carcinoma. The next slide goes more into the Hispanic and
Latino population, and it is always
important to remember that Latino and Hispanic
is a diverse group. Not everyone can be categorized
into one particular group. You may have
Puerto Ricans, Mexicans, people from Central America, and, depending on what
part of the United States, the demographics in terms
of incidence and prevalence may be different. So for example, more
men than women are affected by hepatitis C, but if you see the Bronx, you may see a higher
rate of women infected compared to women that
are infected in Chicago. And if you look
at the Bronx again, you will see that there is a
higher rate of Puerto Ricans with hepatitis C in that region compared to people
from South America in the Chicago region. And that is always
important to realize, because risks of infection
and how people get infection and perceptions and
education is different. So in terms of public health
prevention and treatment, it’s always important to
know what’s the population of the Hispanic community
we may have to work with. And Hispanics
have the highest risk of hepatitis
C-related mortality. So this is a disease that
can be treated and cured, and a lot of our
minority populations are not being treated or
evaluated for different reasons. The next slide goes
into some of those reasons. In terms of gap of care,
Hispanics, for example — historically, low
treatment completion rate, for many reasons. There is higher mortality
rates from hepatitis C, related cirrhosis, and the Hispanic ethnicity
is an independent risk factor for hepatocellular
cancer mortality. In terms of the
African Americans, historically, less likely
to be screened for hepatitis C in the presence of risk factors. And then also, historically,
less likely to be referred to a specialist for
consideration of treatment. So I’m not even
talking about treatment. I’m talking to be
considered for treatment. And everyone who has the
hepatitis C antibody test that has been
confirmed by an antibody, RNA or [inaudible] detection should be
referred for evaluation regardless of what is
going on with the person, understanding that
there may be some barriers that we may need to include
a multidisciplinary team to then increase the
probability that the person will successfully be able
to be evaluated and treated and cured. The next slide. Some other
additional health factors that I think are
important to mention, because they are related to
more rapid disease progression and they are more
frequently seen in some of the minority population, include, for
example, HIV coinfection. For example, in my
practice, 60% of patients have both HIV and hepatitis C, because there is a
lot of substance abuse. For example, heroine use. So addressing substance abuse is a very important
component of addressing the hepatitis C epidemic. Also, coinfection with
hepatitis C — alcohol use. In some of our populations, there is a cultural
element of alcohol. In particular, the
Hispanic, where alcohol is promoted, in a sense. Also, obesity and
diabetes is very commonly seen in Hispanic; insulin resistance
and fatty liver as well. So these are comorbidities
that do need to be addressed in order to decrease
progression and also be able to treat patients effectively. And then we have
two more slides. The next slide, we’re
going into other gaps of care, and I think that our
particular minority populations are disproportionately affected
by people who do inject drugs and other types of drugs, and historically these patients
are not really referred for antiviral therapy, and if they are, they are
not always started or treated, and they don’t
always complete treatment. And in part this could
be related to provider bias or other preconceived notions. And we know
patients may believe — you know, exaggerated
worries about side effects or low perceived
need for treatment. Incarceration — also prevalent. Ranges from 9 to 41%,
depending on the data set. And again, there are things
like unregulated tattoo use in the incarcerated setting. Not everyone will
perform hepatitis C screening, and in not every
setting people get treated. In some settings, people do
get treated for hepatitis C because they
will be there enough to be able to successfully
complete the two or three months of treatment that is needed, but not every
system has the access, and people will not
be there enough time to be successfully
completed — treated. And then individuals
without stable housing — you know, these social
barriers that do have an impact on access to care
because they become priorities for patients or clients, and not necessarily hepatitis
C will be their priority. They may not even feel
that they have any symptoms. So that has also been shown, that it may lead to
other behavioral risk factors that may increase even
more the chances of developing hepatitis C or other infections. And then the next
slide will be covered more by the other panelists, but I think it’s
important to remember that multidisciplinary
teams are sometimes and in many situations needed with our particular population. It has been shown that
it does improve outcomes in terms of treatment,
evaluation and success, and even potentially
decreasing the chances of new infection or reinfection. So before I
introduce the next panelist, the last slide
really goes into a quote from a former surgeon general. Essentially, “Drugs
don’t work in patients who do not take them.” So if we are not
able to improve access to the basic screening
test or to have people even think about it and
understand hepatitis C diagnosis and treatment, the
fact that it can be cured, the fact that the
treatments are easier to do and the side effects of
the medications are minimal compared to what
was available before, people will not even
be able to get access to those curative treatments and potentially
decrease a lot of the liver and non-related liver
morbidity and mortality. So with that introduction, I would like to
introduce the next panelist, who is Dr. Sherrie Wallington from Georgetown University, and she will be addressing
the strategies and options to overcome barriers, and she will be talking a little
bit about the fact sheets. Thank you. DR. WALLINGTON: Thank
you so much, Claudia. I want to thank everyone — there’s a little
bit of echo here, so I hope that’s
not too disturbing. But I wanted to
briefly talk about some of the
strategies that communities can engage in as
part of breaking down some of the barriers. First, we could categorize these
into three overall categories. Next slide, please. First, we have
system-level barriers, and Claudia
captured a lot of these, but I think it’s important
to highlight some of these as well. As far as system-level barriers, some of the focus should be
that we should gain consensus about treatment and
screening guidelines, address issues around
limited infrastructure for providing
assessment and treatment, increase patient knowledge
about hepatitis treatment, increase accessibility
of testing locations, reduce long waiting
lists for accessing care in some locations, reduce high cost
of some treatments and increase
reimbursement to providers who care for hepatitis patients. Some of the
practitioner-level barriers relate to addressing
practitioner perceptions about poor adherence, ongoing substance abuse,
relapse of substance abuse — and some physicians, as
Claudia mentioned earlier, are unwilling to treat patients who are actively abusing drugs. Address suboptimal knowledge
that some providers have regarding how to care for
and treat hepatitis patients and increase provider training. And then some of the
patient-level barriers that are well-documented
in the literature include increasing
patient knowledge, change inadequate perceptions
about hepatitis care and treatment and then address some of
the other social determinants related to poverty, unemployment,
stigma, incarceration, uninsured and underinsured. Okay, next slide. And so community
engagement has to be a part of breaking down these barriers. One of the things
that’s important to remember is to ask yourself, “Who is
missing from this conversation about hepatitis
care or treatment?” Make a target outreach
plan to reach key stakeholders, and go where people are. Sometimes we make assumptions on where we need to go
to identify persons who need
education and treatment, but we have to identify
and work with our stakeholders to identify who’s
missing from the conversation. And some of the benefits
to community engagement — you gain legitimacy
and increased support for planned projects, and you also give the community
ownership of the project and you are able to
mobilize these resources. And some strategies
to engage the community is to seek out
relationships with leaders from
non-represented communities, work with them to identify
the barriers to engagement and ways to bridge the
divide to the community. On a ongoing basis, engage different
types of organizations. For example, I know
Luis is going to be meeting and working very
closely with Project ECHO, with which [inaudible]. And then create many
entry points for engagement. And recognize the different
levels of power [inaudible] impact and opportunities
within the community. When and if you
can, appoint patients; appoint members of the
community to advise the board, to work with you, to plan, and invite them to
be on a task force so that our [inaudible] voices can be a part of
the conversation. Okay. Now, one way to do
that is, include members in the dissemination process. And I want to
highlight some fact sheets that we have worked on
with Luis and his team, and we’re going to show first
the African American fact sheet. Okay, next slide. The next fact sheet is
for the Latino population. Okay. And the next slide is for
the African descent population. And myself, along with
our Georgetown colleagues Kristen Laredo, Areej Nelson, Dr. Judy Wayneand
Dr. Bruce Korba– we worked to
develop these fact sheets, and some of the things
we were interested in doing were to make sure that
these were culturally, linguistically and
health literacy-appropriate, and we used [inaudible] to
guide the scientific content and the messaging
of these fact sheets. And with the many
forms and tools that you use for dissemination, such as media, social
media, Facebook, websites and, again, printed materials,
like these fact sheets, again, it’s important
to engage the community throughout the process so that you can make sure
the messaging is appropriate and also that we’re
using the preferred channels of communication
across different populations. So I’ll stop there, and
now I’ll turn it over to our next speaker
that’s going to discuss Project ECHO,
which is Dr. Kistin. DR. KISTIN: My
name is Marty Kistin. I’m a gastroenterologist at
the University of New Mexico in Albuquerque. And I would like to
thank Luis and the organizers for giving us this opportunity
to spend a few minutes talking about Project ECHO. Could I have the
next slide, please? Next slide. So Project ECHO was
conceived and developed at the University of New
Mexico by one of my partners, Dr. Sanjeev Arora, in 2003 to provide hepatitis
C treatment to patients in rural, medically underserved
areas of New Mexico. At that time, we had a
specialty hepatitis C clinic at the University of New Mexico. No one else in the state
was treating hepatitis C. And there was an
eight-to-ten-month wait for patients to be
seen in our clinic. Project ECHO was an
attempt by Dr. Arora to figure out a way to
get hepatitis C treatment to patients in
these underserved areas. At that time, the
treatment for hepatitis C was extremely difficult. It was
interferon and ribavirin, which is akin to chemotherapy. Patients, even if they
could get into clinic, needed to come once a
month for 12 to 18 months, and some of them would have
to drive 300 miles each way to be seen in our clinic. Could I have the
next slide, please. Project ECHO uses
videoconferencing technology to train and support
healthcare providers who already live
in underserved areas in New Mexico
and around the world so that those providers
could care for patients with complex chronic diseases that otherwise
would require special — Sorry. Just keep it on
that other slide for a second. Back one, please. … That otherwise would
require specialty referral, which for these patients
was not generally available. Even in the United States, where there are more
specialists than anyplace else in the world, there is an extreme shortage
or at least a disconnect between patients having
access to that specialty care, and the situation is even worse throughout the
rest of the world. Next slide, please. So the Project ECHO model
uses four different principles. We use technology to
try to move the knowledge of how to treat these conditions to where the patients are rather than trying to
physically move the patients to where the knowledge is, such as the
subspecialty hepatitis C clinic at the university. We share best
practices for disease treatment with those providers in
the rural underserved areas so that, using this model, we think we can get the
same quality and level of care in rural
underserved areas of New Mexico or Africa or
Ireland that we can get in Albuquerque or Boston
or San Francisco or Chicago. We use case-based
learning in our model, like most providers do
in their medical school or in their residency, and then we monitor outcomes
to see if we’re really doing what we think we’re doing. Using this model,
we know that providers in these
underserved areas are happier. They are more likely
to stay in those areas because they have a mentoring
relationship with the experts, and they also develop a
networking relationship with each other. Next slide, please. So what happens in ECHO is that we have what
we call hubs and spokes. Back one, please. The ECHO links
specialist teams at the hub, and it’s important in light
of Dr. Martorell’s comments that, for
hepatitis C, for example, we can put not only
hepatologists at the hub but a mental health provider,
a behavioral health provider, a nutritionist — actually,
anyone we think would be helpful to the spoke provider. The hubs and
spokes participate in weekly online teleECHO
clinics called learning loops. This is not a one-time seminar
or a teaching opportunity. But these
basically are weekly clinics so that the providers are
supported in an ongoing fashion. The clinics combine
case presentations, which may take up an hour and 40
minutes of a two-hour session, and maybe a 15-to-20-minute
didactic learning session for the spokes. Next slide, please. So the spoke sees a
patient at their clinic, and they present the
case via video to the expert. The patient is not present. The spoke and the
hub discuss the case, and the provider — please keep it back on
the previous slide, please — the provider will
actually treat the patient. So a single provider may
log in to an ECHO clinic and present one case a week, but they’ll have the
opportunity to observe other spoke providers
presenting 12 to 15 other cases that same week. This process will be
repeated over and over until the provider
becomes expert at treating that particular disease. Initially what
happens is that the provider becomes comfortable
treating their own patients for that condition. With a little more exposure,
they may become comfortable being a local consultant
within their own clinic, and ultimately we’ve
found that that provider becomes a
mini-expert and a consultant in that geographic area. Next slide, please. In 2011, we
published an article in The New England
Journal of Medicine. We took 407
patients with hepatitis C, previously untreated. Remember, these were in the days of interferon
and ribavirin. A hundred and forty-six of
the patients, the controls, were treated at the
hepatitis C specialty clinic at the University of New Mexico. The other 261 patients
were treated at 21 ECHO sites around New Mexico. These were 15 federally
qualified health centers and six prison
sites within the state. Next slide, please. And for this
presentation, this is probably the most important slide. These are our results. In the second and
third lines there, you can see
that the SVR — that is basically a
cure rate for hepatitis C — was identical whether the patients
came to the hepatitis C subspecialty clinic or whether they were
treated in the ECHO model. But the most
important number here is that there was a statistically
significant difference in minority
patients in the ECHO group. This certainly was
not surprising to us. But what it means is
that at least in the days of interferon/ribavirin
treatment for hepatitis C and a number of
other conditions, these patients
weren’t just going to get their hepatitis C treatment
if they waited long enough. They were never going to
be treated for hepatitis C under the current
situation in those days. And this, to us, is the
most important indication that using this model, we
provide increased levels of care and increased availability
of care to minorities and underserved populations. Remember, all of the
patients in the ECHO model were poor and underserved, but a statistically
significant difference in minority
populations in that group. Next slide, please. So our
conclusions at that time were that you could get
comparable medical results, comparable safety — in fact, the safety
was actually better in the ECHO-treated patients. That was a little
embarrassing, initially, for the subspecialty clinic, but our feelings are
that patients do better if they can be treated at
home with their own providers surrounded by their family,
without having to travel 300 miles each way
to get their care. We also felt that this showed
that you had increased access to treatment for this complex
condition for minority patients. Next slide, please. Since that study’s been done, we’ve identified factors
that make a condition amenable to the ECHO model. We had 50 partners in the U.S. Most of these are
academic medical centers, although we also
partner with a number of government
agencies like the CDC, the Department of
Defense and the VA. We have over 30
partners globally. These are mostly governments
and national health services in various
countries around the world, and there are now more
than 50 complex conditions being treated. Next slide, please. Next slide, please. So now I would like to welcome
Dr. Jeffrey Caballero from the Association of Asian Pacific
Community Health Organizations. DR. CABALLERO: Thank
you very much, Dr. Kistin. I first want to thank the
Office of Minority Health for sponsoring
this important webinar and inviting me to participate. Hello, everybody. My
name is Jeff Caballero, and I am the
executive director at the Association of Asian Pacific
Community Health Organizations. The topic that I
was asked to talk about was recommendations to build on
current trends and successes. And before I get
started, I just feel like I need to add a little context before my
recommendations are presented. My experience in my area
of expertise is primarily around hepatitis B, and that’s
really where I’d be coming from in terms of my presentation
and my recommendations to you today. Just in case it did
not come out clearly in the previous
presenter’s talk, I just wanted to note that
liver cancer in particular is the third leading cause
of death in the United States. Asian Americans have the highest
incidence of liver cancer, and the primary
contributor to liver cancer is hepatitis B and hepatitis C. But in
particular for hepatitis B, one in 20 in the
U.S. have hepatitis B. That is, 2 million
Americans have a chronic hepatitis B
virus, 50% of which are Asian American or of
Pacific Islander descent. So to that point,
next slide, please. I wanted to be able to
share with you a little bit about Hep B United. In 2012, with the help of
the Office of Minority Health, AAPCHO and the
Hepatitis B Foundation cofounded Hep B United. This is a national
coalition of local coalitions. As you can see in the
slide, where the dots are, at its founding, Hep B
United brought together more than a dozen local
coalitions at that time that were acting to
address hepatitis B challenges in Asian American and
Pacific Islander communities in their local area. Since 2012, Hep B
United has now grown to a coalition representing more
than 30 plus local coalitions and national organizations that
have aligned in this effort. We’ve come together to
support and leverage successes of our local coalitions. Members of the
coalitions include CBOs, medical students, physicians, state and local
health departments and many community
health centers or FQHCs. Next slide, please. Through Hep B United,
we have been able to align many national and
local goals and efforts on behalf of
underserved communities served. We’ve worked to, as
noted in this slide, raise the profile of
hepatitis B and liver cancer in the communities to
increase hepatitis B testing and vaccination throughout our
different community efforts and improve access
to care and treatment for many
individuals with hepatitis B. Hep B United in particular
provides webinars and trainings and shares best practices; provides many grants and
mentorship to new coalitions around the
country that are aligned with these specific goals. Next slide, please. With that in mind, some of the recommendations
we wanted to focus on — there are many, but
these are some of the areas we’ve just wanted to focus on, given the limitations
of the presentation: to continue to
seek opportunities for federal and
community collaborations to reduce
disparities in hepatitis. Hep B United in
particular has done this through the use of the
HHS National Action Plan to Eliminate Viral Hepatitis. Hep B United has actually
utilized their HHS action plan and developed a
strategic plan on behalf of all of our local coalitions. That is, it directly aligns
with the HHS action plans so that all of
our local coalitions are working in concert with
the HHS action plan activities. Having said that, there
are two particular areas that we [inaudible] are
recommending greater attention and focus to in
the years to come, and they are to
improve collaboration that will improve surveillance
data and completeness and quality of the information so that we can make
better policy decisions regarding resources and
communities to be targeted, and then secondly, one
of the winnable battles that many of our
local providers and groups are focusing on is improving
HBV screening practices of expectant moms and prompt administration
of the birth dose. AAPCHO, ourselves —
AAPCHO’s been working on our data warehouse to implement
the hep B patient registry to strengthen our
members’ care and services related to hepatitis B and
the needs in their communities. But the last area that I
wanted to be able to highlight in particular is that
AAPCHO is also partners with the Hep B Foundation to collaborate
with Story Center on hepatitis B
storytelling projects. The intention is to make
real voices of everyday people living with hepatitis B
or affected by hepatitis B a key ingredient of our
prevention and advocacy efforts. In particular, the plan is
to provide training and support to create storytellers
from our community, then to build on that
capacity and support them as spokespersons in their
local community and nationally. Then this will help provide
us the type of leadership to challenge much of the stigma and efforts that are needed to
promote hepatitis B screening and care at the local
and at the national levels. Next slide, please. One of the other important
strategies that hepatitis B has been utilizing
in the last few years is working with our
various national partners. This slide across
the top lists for you some of the national
organizations or partnerships that Hep B United
has been working with to coordinate not just our
policy and education efforts in the country, but we’ve also made a
very intentional effort in terms of
promoting partnerships between our local coalitions and
the hepatitis B coordinators at the local level, hepatitis coordinators at
the state or local level. We’ve partnered with the Hepatitis
Coordinator Association so that we can encourage
and identify new opportunities for the
coordinators and the coalitions to develop meaningful
goals and objectives together. So this is an area that
can continue to grow as the communities that are trying
to address viral hepatitis in the country are
trying to establish themselves. Next slide. Another critical
resource and recommendation, particularly for Asian
American/Pacific Islanders, given the diversity of
cultures and languages that exist among
their high-risk populations for viral hepatitis, is a centralized and effective
communications effort. Know Hepatitis B is a
very important campaign built on a very strong model. It is recognized as
the first multilingual viral hepatitis
campaign sponsored by the CDC. Through this
campaign, we have CDC’s scientifically valid messages
that have been developed in language in partnership
with our communities and then distributed
through our community partners. It’s been a very effective way of helping our
community partners with much of their
education and outreach efforts to ensure that the
consistency of our messaging and effectiveness
of these materials are of highest quality to draw many of the
patients that are at risk and communities that are at risk to actually see the
messages as opposed to just another poster to walk by. Currently, their campaign is
available in seven languages, and we’re excited —
in this upcoming year, we’re anticipating more
languages being available. So with that, my
last slide, please. With that said, I
just wanted to draw — for more information,
please go to our website, Hep B United, to
get more information about the campaigns and the
resources that are available. That concludes my presentation, and I now turn it back
to Dr. Claudia Martorell to moderate the discussion. LUIS: Hi, this is Luis. It seems like Claudia
might have dropped off. If you have any
questions for our panelists, please put them in the chat box, and we will try to field them and have the
panelists answer your question. Marty, if you can hear me, can you elaborate a
little bit more about not just the
founding of Project ECHO and the amazing work that
you have done in New Mexico, but what have been some of
the barriers that Project ECHO and its partners have
faced when it comes to engaging consumers in
underserved communities, and what would be some
of the recommendations that you have? DR. KISTIN: There we go.
Luis, can you hear me now? LUIS: Yes, we can. DR. KISTIN: Did everyone
else hear the question? DR. WALLINGTON: Yes,
I heard the question. DR. KISTIN: Great. So the question was
about some of the barriers in these underserved areas. And we have numerous partners, and all of them have different
funding and support models around the world. And so each one
of them deals with how the ECHO project
and particularly the time of the providers at
the spokes — whether it’s a family practitioner,
a nurse practitioner or a physician’s assistant
— gets paid for that. And so in this
country in particular, with the type of
healthcare system we have, we are constantly
struggling with how we are going to get
clinics and clinic providers to have the time to
participate in ECHO when most of their clinics
are on a production basis. We have numerous other
partners around the world, like in Canada or
Uruguay or Northern Ireland and the Republic of
Ireland or Vietnam and Namibia, where the national government
looks at Project ECHO and decides that
it’s a worthwhile model and builds it into
their healthcare system. There are a number of
states in this country which have done the same thing. Missouri is a perfect example, where they fund Project ECHO
directly at the state level to provide healthcare to the
people who live in Missouri. And they have found this to
be a very satisfying model. In many places, Medicaid does
in fact pay for Project ECHO, pay the providers. They don’t pay
anything to Project ECHO to support that model. And there’s currently a bill jointly
sponsored by Senator Hatch and the Democratic
senator from Hawaii called the ECHO Act to
look at embedding ECHO into federal funding sources
like Medicare and Medicaid. LUIS: Perfect. Thank
you so much for that. Jeff, going to you, you talked a lot
about your efforts in terms of the partnerships
that you have created to lead the
hepatitis initiative. Can you elaborate on, what would be some
of the federal support that we would
need in our community to continue some
of these efforts, and also, what would be
some of your recommendations in terms of
getting stakeholders, such as the ones that
are participating today and listening today but
also have spoken today, to work together, not just in silos, but across
multicultural communities and working together
to lead these efforts? And lastly — and I know this
is a multitiered question — but lastly, how would
you suggest we go about building on these efforts
from a stakeholder perspective and multicultural
and sharing information with our communities and our
providers in our communities? DR. CABALLERO: Luis, obviously, if I could answer
all your questions, I’d solve the problem
that we all have nationally, but I can at least
just share with you some of the lead
insights currently with regards to
answers or potential answers to your question. As many folks may be aware that
are involved with this issue, there are very limited national
resources that are available, particularly federal
resources that are available, to help address
hepatitis B in this country. To this end, we at AAPCHO and
Hep B United, Hep B Foundation, have been trying to work
with our federal partners to increase the availability
of national resources that would be focused to
help address viral hepatitis, not just B, but C as well. But with the existing resources that have been
nationally available, we have been working
closely with CDC to try to get better parity in terms of
distribution of resources that are available for B compared to other diseases
that they might be working with in the division to be more
relative to the prevalence around the country. But aside from
CDC, there are a number of other federal agencies
that are trying to address hepatitis B, and
AAPCHO in particular, because we’re a
national association of federal
qualified health centers, we’ve been working
some more with HRSA in trying to help focus
the resources and the efforts in that area. But there are
interagency workgroups that are working to
address the national viral hepatitis B
challenge, and HHS, and if folks are
not familiar with that, the interagency working
group has very specific goals and objectives that they can explore
potential partnerships with. Now, at the local level, the first thing that I
would really recommend is that I would ask them to
work and to collaborate with some of Hep B
United’s local partners. Some of our local
partners have been in existence for more than five or six years and have
institutionalized relationships with some local support. So if anybody as an
organization or a provider is working in isolation, please get in connection with
one of our local coalitions. All their contact
information is all listed on the Hep B United site so that they can connect with their
respective local coalitions and get into some of the concerted
efforts across the country. I hope that answers
part of your question, Luis. Was there another part
that I might not have recalled, or do you want to go
on to the next question? LUIS: Let’s go on
to the next question. And Martin, I’m going to ask
you to answer this question. And this is from a
Native American perspective. Do you, as Project ECHO, work with the Native
American community, and if so, what has
been some of the efforts or some of the findings working with the
Native American community? DR. KISTIN: Yes. Thank
you for that question. Some of our most spectacular
ECHO projects ongoing now are related to Native
American communities, and we have a collaborative
project that’s done in conjunction with
the CDC Project ECHO and a number of Pueblos
and tribes around the country called Good Health and
Wellness in Indian Country, and this project links
up Native American groups who previously have not
talked to each other much about this to
brainstorm with each other and to share with
each other health policies and things that are working in their individual communities to encourage better health,
better eating, exercise, diabetes, hypertension. And this is a
project that is run now — it has evolved to
being run strictly by the Native American community and just facilitated by ECHO and by the Center
for Disease Control. LUIS: Thank you for that answer. Quick question: This question comes
from Georgetown Law Center. Are any of you
working with legal partners to develop domestic
policy recommendations related to their research? Sonia, who asked the question, is working on hepatitis
policy associated with the O’Neill Institute for
National and Global Health Law at Georgetown Law Center and would be
interested in exploring collaborative opportunities
with the presenters. And that would be
to Jeff or Martin. We lost both
Sherrie and Claudia. DR. WALLINGTON: Oh,
I’m here. This is Sherrie. LUIS: Sherrie — so
go ahead. I’m sorry. We’re not seeing you
on the list. Go ahead. DR. WALLINGTON: Oh,
yes. I thought signing out would help this echo,
which it sounds like it did. So Irene Jils and myself, Kris Lafredo
and Brent Corba, who are also
researchers here, Judy Wayne — we are looking also at the
possibility of partnerships with the law school, so I’m glad to see
that they signed on, because we did notify
them about this webinar today. And I think when I
was listening to Jeff and then also Martin, some of the other
national efforts that I’ve seen across other disease
and infectious diseases related to [inaudible] —
or one of my areas of interest is HPV, and when you
ask the question about, how do we work
outside our silos — I’m not sure it exists, and Martin and Jeff
can speak about this, but a national
hepatitis roundtable convening, Luis, like
we did with the meeting we had locally in D.C., but make it more
national and broader where we identify all
of the advocacy groups, organizations,
research organizations, and have representatives
from those advocacy groups as well as patients so that we can bring all
of these voices together, bring all the stakeholders and also make sure that
we help our policymakers with accurate,
factual information — because I know with some of
the legislative initiatives what policymakers
really say they want — they want fact sheets. Yes, they like the websites.
They like the social media. But at the end of the day, they want something that’s
simple, like infographics that gives them the facts, costs associated with
some of these initiatives, as well as, you know, statistics that they can easily understand. And I think sometimes
if we can develop ways that we can
deliver the information, ways that people
prefer it better, that might help as well. DR. CABALLERO: Hello,
Luis, this is Jeff Caballero, and I just wanted to
jump in and say that, to the letter, the National
Viral Hepatitis Roundtable, NVHR, has been a critical
partner of Hep B United. In fact, I was part of
the steering committee for several years before
settling down and helping found Hep B United. And NVHR is a
critical partner for us, and I feel that NVHR can
be an important platform for many communities of
color who have not been historically involved in
viral hepatitis advocacy and education and change to be the medium to facilitate
that ongoing communication. So NVHR.org is their website, and they do have
staff in Washington, D.C., as well as the West Coast. And I believe Ryan, who
is the director there, would be very happy to facilitate
further communications with this group. LUIS: Jeff, we have
a question for you. What are the local
agencies that are helping to educate the Asian community
about hepatitis C and B? DR. CABALLERO: As
many of you will see, if you take a look at the
list of coalition members, the coalitions are
different combinations of [inaudible] and partner
agencies at the local level. We’ve been able
to cultivate a model that welcomes any
type of organization that is interested in
addressing hepatitis B in the Asian American/Pacific
Islander community when we had
initially founded it, but many of our partners
now are starting to expand and go beyond the
Asian American/Pacific Islander communities. And you’ll see a better
representation of who those are than me trying to
describe the plethora of models that currently exist. I mean, all kinds of — they can either
be led by CBOs — some are led by
medical student associations. Some are led by clinicians
or FQHCs at their local area. It really is very diverse in terms of where the
leadership has cropped up and the kind of partners that
they’ve been able to cultivate over the years. Again, some of
these groups have existed for more than five
years and so have been developing partnerships
for a very long time and would welcome invigorating
new partners as well. LUIS: Well, thank
you, Jeff, for that. One of the questions is, where
can we find the fact sheets that were highlighted earlier? Those fact sheets will be on the NHIT
Collaborative website, so it’s NHITUnderserved.org
g/hepatitis.html. And we will upload
those in the coming week, once we get full
clearance to do so. But that said, we’re
going to go ahead and conclude today’s webinar. Once again, thank you for
attending today’s webinar focused on hepatitis
in communities of color. A special thank you to
our speakers, our cohosts and partners, the Office of
Minority Health Resource Center, the Georgetown Lombardi
Comprehensive Cancer Center. This concludes today’s webinar. Have a great afternoon, and
thank you all for participating. DR. WALLINGTON: Thank you.

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