Johns Hopkins Center for AIDS Research: Bridging the Gap 2015 Symposium

We’re gonna start the morning
with Dr. Marisela Gomez. But first, I wanted to let Dr.
Susan Sherman and the chair of the community, which is advisory
board, greet us for a moment. >> Well, good morning everyone,
and thank you so much for joining us today as we explore
the roots of HIV disparity, poverty, race, social injustice. This is a subject, these
are subjects that are near and dear to my heart. In the City of Baltimore, where
we live, where we work, and where we play,
1 in 42 people are HIV positive. And in this zip code, where all
of these wonderful researches sit in the midst of this
absolutely fantastic medical facility, 1 in 20 people
are HIV positive. And we wonder how could this be. Could it be that stress and
poverty are indicators of how well somebody will
do with viral suppression? Could it be that in
high poverty areas, the epidemic is double that
of the generalized epidemic? Could it be that
our brothers and sisters face educational issues,
transportation issues, employment issues that keep
them from living well? And that is why we
are here today, at Hopkins to talk about
some of these issues. So, we look forward to
exploring with you today, as we look at race, at social
justice, at inequalities. We look forward to talking with
you about moving from areas of transaction between each other
to areas of transformation and working together. So, we’re excited to have
Rashod Robinson with us. We’re excited to have Dr.
Gomez, Dr. Chuck. And we are excited that
you are here to do your part in the eradication
of HIV and AIDS. So, we thank you for
joining us this morning. >> [APPLAUSE]
>> I’m just here to welcome you to Hopkins. My name is Susan Sherman, and
I work with David Holtgrave, and we lead
the Baltimore Collaboratory, and have the honor of
working with Jordan. I always say one of the best
things I’ve done in the past 17 years here was
hire Jordan White. >> [APPLAUSE]
>> Because we are very blessed to have Jordan. I’m really impressed that
the CPAB decided this would be the theme. It’s really sad, 30 years later, we’re still
having these conversations. I just was thinking back to the
roots of my work when I started AIDS work in San Francisco and
Oakland, California, and these were conversations that
needed to happen, and since we didn’t have them for so long,
it’s kind of now entrenched. Because if we had been
addressing issues of poverty around HIV, maybe we actually would have
done something about poverty and discrimination, and lack of
access to jobs and whatnot. But it’s really great that
we’re taking this on today and I welcome you. Thank you. >> [APPLAUSE]
>> So, as we make our transition to
our first speaker Dr. Gomez. Dr. Gomez as many of you know
is the author of Race, Class, Power and
Organizing in East Baltimore. A book that really looks at and dissects many of the issues that
we are talking about today. She’s a well-known
speaker in the community, she’s a staunch public
health advocate. I was excited that we were
able to get her here today to set the tone and give us a dose
of some of the conversations that we don’t get to always
have in the academy. And she’ll be talking to us
about structural inequity this morning. And if we have time,
we’ll address a few questions. I did get a few emails about
that, but without further ado, Dr. Marisela Gomez. >> [APPLAUSE] >> Good morning everyone. >> Good morning. >> It’s great to see
you all here, and it’s great to see all
the black and brown faces. >> [LAUGH]
>> I think I make a point of saying that because
wherever I go and I participate in a city
that’s majority black, many of the audience seem
to be majority white. And it’s a reflection, I think,
of the status that we’re dealing with today in every
kind of illness. Because really,
illness is simply a symptom of the structural
inequalities that exist. And when we get to the symptom,
we’ve been doing it wrong for a long time because the symptoms
show the effect of the systems. And so, when we’re dealing now
with the symptoms, it means that we’ve been neglecting
the structures, the systems. And that’s what I want
to talk about today. I’m thrilled to be here. Hopkins is my Alma mater. As much as I write
about them and give them hell,
it’s like family, right? If you don’t do the work
inside the house, how can you really do any work
outside the house, right? And so, it’s a call to justice I
think, when we look inside and try to figure out how to
transform the inside. It’s interesting,
I first came to Hopkins in 1990, to do a PhD, and
my work was in HIV. I had been told my brother
was HIV positive, so that was a big deal for me. I decided to not do
research on what I had intentionally decided
to do research on. And I switched to doing
HIV work, that was 24, 25, actually 26 years ago. I know, I don’t look it,
right, yeah. And what I found though was that looking at HIV in the lab and
trying to figure out how to make molecules to
target the penetration of the virus into the cell,
that was not sufficient. We needed to get out there and
look at systems and structures that created
the difficulties where people would even
be exposed to the virus. And then, when they were
exposed, how they were treated. And so,
I certainly left bench work, and I haven’t visit the bench for
probably, I don’t know, 18 years or so, and I’ve been
more involved in public health and advocacy around race and
class, particularly around how racism and classism affects
everything else in society, particularly our health. So, I’m going to contextualize, HIV and equity, because I think
that’s how we really need to start thinking about it. That HIV infection
is inequitable distribution of disease. And I probably won’t do justice
like our first speaker would have, but I’ll try to add
a drop to that stream. You’ll see some slides that you
think have absolutely nothing to do with what I’m presenting, and it’s an invitation to stop and
just breathe. Something we don’t do enough of in
the process of doing the work. So, what is
structural inequality? So, we have structures and systems that are created
by policy, right? People make policy,
politicians make policy. But politicians are also
effected by private interests. We live in a society where
money speaks volumes. And it speaks volumes into
the public sector as well. So really, public policy in the
systems that we have and that we work in, it’s really created by
people who have resources and the people that we
elect to represent us. So, these policy
in effect is what, they create the systems that
will provide access to health, will provide access to housing. Will provide access
to education, so the policy in effect is what
starts out the whole process. And so we have to start thinking
all these upstream ways that results in how we access
care and why we have health and equities. Public policy in effect
is a social determiner of health, right? It’s a determinant of health
because depending on the policy is gonna depend on how structure
is framed and therefore, who has access to what. When someone gets infected,
how do they get resources? Who are they, the color of
your skin, their gender, their sexual orientation,
whether they’re rich or poor determines really how
they access healthcare. It’s as simple as that. But it’s not even that
superficial because it also determines in effect, whether or not they’re going to be
exposed to illnesses. Whether or not they’re
going to be exposed to the chronic stress that was
mentioned this morning. And we’ll talk a little
bit about that. So, public policy really
is not only itself a determinant of health but
it also determines, The other factors that will
allow us or determine whether or not we’ll have access to care,
right? And so when those distribute
systems and structures inequitably, then it’s going to
have an effect on who does that. So I’m really planting
that seed, right. I’m really establishing and I’m hoping that you’re buying it
that public policy, in effect, is a determinant of health,
directly and indirectly, in the way that it affects all
the structures and the systems in the way we access healthcare
and healthcare resources. So just sort of tapping into the
existing way that we talk about social determinants of health
because we’re yet to really talk about public policy and
political economy as much. Some people do,
Navarro here does, but it’s not as much a big
thing in public health yet. We still don’t touch the whole
political economy part as a determinant of health,
but we’re getting there. I mean 10 or 15 years ago, we wouldn’t talk about racism
as a determinant of health. We’re only now, in the last eight years,
jumping on board at that. Health disparities only
became vogue 10 years ago. I remember 20 years ago,
when I was first here, trying to talk to someone about that,
there was no reception for it. So we’re still not there yet
as far as looking at the bigger structures
as determinants of health. But we talk about race as
a determinant of health, we talk about class as
a determinant of gender. And more recently, we’ve been focusing on place
as a determinant of health, that is, where you live,
work, study, play, pray. These places,
they congregate factors that determine our access to
care, our exposure to stress. As you know, especially in
Baltimore, we’ve also been talking about, in a place-based
manner, that the zip code you live in determines how long
you’re going to live, all right? So you can live
five miles apart, and you can have a difference
in life expectancy of 20 years. So if you are born in
Madison-Eastend or Middle East Baltimore,
which isn’t as much now in Middle East because it’s
becoming very gentrified, it is a different race and class of
people that are inhabiting it. So it’s place, but it’s also
place determined by who’s occupying the place and
the space, right? So if it’s a zip code that
has high poverty indicators, low education status, not that
many people graduating from high school, low income earners,
all these factors determine and make up the place. And, therefore, now we talk
about a place-based determinant of health, especially now
that we’re seeing across all our cities the discrepancy
between where people live and their life expectancy,
that there is this correlation. And I think that was tapping
into that when just this morning you said 1 in
20 people in this area, in this zip code,
are HIV positive. Whereas 1 in 44? >> 42.
>> 1 in 42 across the city. So, again,
we have to think about that. That’s a real great, clear example of a place-based
determinate there. The zip code is determining
the difference in the HIV, probably exposure,
access to care, and all the other factors around it
when someone becomes infected. What are the steps that allows
them to get that care they need? There are many steps involved,
and mapping out those steps is part,
I think, of how we’re going to go about
addressing this illness. This is a slide from Nunn et al,
who was one of the first people to talk about place-based
HIV infection. This is, I think,
this is her New York work. But this is just to, I don’t
know if there’s a pointer. Is there a pointer? No pointer, okay. This is to give you an idea,
just if we look at the bottom, the blue map, you see that if you look at the darker blue
areas, these are percentage of higher African-American
populations, okay. And then if you go up to the
green map, if we’re trying to just look at the correlation
between race, socioeconomic status, so you kinda see
where the darker shades are. And then if you now look at
where you’re seeing the highest prevalence of AIDS death, and of
HIV, or people living with HIV, you’re seeing that
there’s a correlation. Oh. >> Great. You see the correlation
here around these areas where you’re having high High numbers of
African-Americans, high levels of social economic
depravity, AIDS, HIV, right? So she was one of the first
people who started talking about, as a population basis,
that HIV is correlating with places where people
of color are living and where there’s poverty. She’s not the first person to
talk about place-based illness. But she’s one of the first
people to put it out there and then to also say, in the way we
address HIV and strategies and treatment, we have to start
thinking of a place-based model, meaning we have to go out to
those areas differently than we do with the rest of
the populations. So I’m not gonna spend a lot
of time on their EPI because Doctor Chalk here
will do that for us. But I wanted to just
show here in Maryland, so this is from the HMH data,
the number of cases here, and
this is percent numbers here, and how it differs according
to where you live. So this is statewide level data,
right. But if you look at
Baltimore City, and if you look at some of
the other counties, and then you come on down here
to Prince George’s County, right, you see
Montgomery County. Look at where the greatest
percentages is showing up, right? So this is just to kinda give
you a correlation around what Dr. Nunn is talking about. I think we’ll hear more about
the Baltimore City level information. Racial-wise, if we look at the breakout from
within our race and ethnicity, you see our rates, how our rates break out here. Again. It’s really important just to
notice who’s becoming infected. I mean, I think everybody in
this group knows that already, but we always try to wait for
the data. And usually science catches up
with people, unfortunately. But once we have the data,
we have to use it, we have to use it to look for
how we get our resources and direct our resources. Okay. Now, this is some of the same,
but we’re just looking here at,
what is this one? This is time for
care from diagnosis. So this is just a little
snapshot of the difference in who’s getting access to care
after becoming diagnosed, right. So if you look at,
again, who’s getting the quickest access to care and
who’s not? >> Right. Now, this is some of
the city-level data, and again I’m going to run through
these slides because I think those will be presented
in much more detail. But this is a slide of the
Baltimore City HIV diagnosis. This is 2009 to 2011 data, and
this is for diagnosis of HIV. And the arrows up there
are showing you the areas of highest prevalence,
right, for diagnosis. And the slide on the right,
or the graph on the right, is showing you it’s kind of
a snapshot of socioeconomic status. Right, unemployment,
people looking for work. To kind of again,
trying to bring home this place space understanding
right here in our city. So places where we have
the highest rates of folks looking for work,
they’re correlating, right, with places where we’re having
our highest HIV diagnosis. So, and I do that with
the next few slides. It’s the same graph on the left, it’s just different indicators
of who’s occupying those spaces. All right, so
this is by race now. Previous one was SES,
this is by race. So you see where African
Americans are populating or living and where we’re getting
our highest prevalence. And I just point out two places. I didn’t go through but just to
give you a sense, a snapshot. Another SES, this is less
than a high school diploma. And you see a snapshot too,
right. Where the same places
are the places we’re seeing folks without work, folks
without high school degrees. Which are, if you don’t have
a high school degree, you don’t get to access the spaces that
will allow you to continue up that economic ladder to success
as we say in this country. This one,
this is life expectancy. So the lowest life expectancy
is the lighter shade, so we’re also seeing some
correlation, right here. The same places, the arrows
are the same and over here, Madison-Eastend, which is
really right next door to us. It’s like what,
five blocks away? Greenmount East,
that’s right next door. This is where we’re seeing
the lowest life expectancy. Just take a look at
where the least HIV is. I always pick on Roland Park
area because it’s easy. But because it’s a really huge
disparity in this community where there is majority white. If you look at
the socioeconomic status and now you look at rates of HIV,
you see here, and then you look at
the life expectancy there. So we’re seeing correlation, now
I know correlation is not cause, and we can be clear on that, but we’re seeing enough correlation
on these population level data, not just in Baltimore city,
but in many cities. And so
I think it’s an indication for us that we need to get
the data more clearer, so we can say yes,
there is cause and effect here. And we know sufficiently that
there is cause and effect, but we need to connect
the dots more, I think. This is mortality by age. So this is a very typical one,
right, infant mortality. We always use this
as our indication of what’s the health
of a population. So what we see what percentage,
less than a year old. So it’s the same picture. I think you get it now. The places are telling
us information. What do we do with
that information? And this is just
a quick breakdown. Again, I didn’t want to spend
much time on this because I know this will be
revealed in more detail. But who is getting HIV? Men having sex with men, 31%. And IV drug users, 33%. So how did we create these
places of poor health? So the only way that you can fix something is to figure
out how it got to that state. And so we have to be really
clear in why we’re living in the statuses that
we’re living in today. And that is part of
the structure of how we created America. So we have a whole
system of separation and segregation based on race in
America, started with slavery, then there was Jim Crow. And there was massive housing
segregation, urban renewal, just jumped on board of that,
gentrification, which continues into today
right here in our backyard, this very institution and
its participation in that. And serial forced displacement,
which is something that Dr. Mindy Fullilove and the Wallaces
write and do research on how the systematic displacement
of people over the years, through these different
processes of movement. Housing segregation,
people move, urban renewal, people move, gentrification, people move, mass incarceration,
people move. People are moving out of their
homes and their communities. So they talk a lot about how
this affects the ability of someone to be resilient and
bounce back, so when they’re faced with some illness, how
do they bounce back from that? How has their immune
system been weatherized to be able to respond to
every challenge they face? Especially when you compare it
to a group of people who haven’t had the same kind of challenges
as people who have been serially displaced over and
over again. So these are real
things that we have to start thinking about
when we think about HIV. Because it’s unfortunately the
same group of people who keep getting displaced. African-American people
of color, poor and low income folks. Which results in the communities
becoming fragmented and being at risk for
diminished health. This is some of Dr.
Mindy Fullilove’s work, which she was generous to let
me have a few of her slides. Just showing this on a timeline
from slavery, through Jim Crow, through urban renewal, to
the industrialization, through gentrification which continues
on if we continue this. And the processes that have
been occurring, which she calls Black Upheaval, resulting in
serial forced displacement and the effect of that
on our health. And that’s some of the work she
is engaged in in doing more on looking at all the chronic ways, chronic illnesses that come from
this whole pattern of movement. Now this is just to give us
a picture of how this might have been happening, so just kind of
trying to keep it place-space, kind of drop that really
into the consciousness. So this is a redline map
of Baltimore city, so everybody’s aware of redlining,
that was one of the processes that resulted in
such segregation. So redline was the area that
was considered not worthy of investment by the banks. And not just by the banks, but by Federal Housing
Administration said no, we won’t approve loans, and
we won’t give you the funds to distribute funding for housing
in these neighborhoods they claimed were not
sufficiently intact. Those neighborhoods happen to
be black, a majority black. So these are the areas that
were deemed not worthy of development. And I use those words
really intentionally, because we struggle as
a country to face racism, and that is what we have been
building this country on. And I’m not Ta-Nehisi Coates,
but I certainly understand when
the brother talks about why we need to start dealing
with racism in a very real way. Because slavery didn’t just
kill people back then, the legacy of slavery continues
to kill people today. And that’s what we in
public health study. And so to try to separate the
history of what we’re dealing with today in our public
health work will never address fully the cure, will never
stop and prevent these things. The only way we’re going to
do it is to dig the root up. And the root comes
from way back here, before this root
comes from slavery. And so we have to understand
how that process, this is not to cause shame and guilt, cuz
shame and guilt is ineffective. It doesn’t allow us
to move forward. But what knowing our history
does is allow us to use those facts, so we use it in the way
we design treatment and care today, taking into consideration how
we got to be where we are today. If we don’t start doing that,
we’re just playing. Getting nice research grants,
establishing centers for this and that. But until we do things like
y’all are doing today, which I’m very impressed with, that you’re
actually focusing a whole symposium on disparities on
the social causes on inequities. The parts that dissecting under
microscope will never get at. This is the part we have get at, the structures how we
got to where we are. So when you look at this,
and you look at say, today, where African-Americans
are living in Baltimore. So, it’s interesting, right? Because the process of
gentrification and urban renewal has resulted in the group of
people who are living in these core areas that were
considered bad have moved out. But most of them didn’t move
out on their own, some did. Those who could leave at
the times when it was the worst, especially the industrialization
process, did. But the majority of black people
who were moved out from this inner core were
moved out because of serial force displacement, some
kind of gentrification process, some kind of urban
renewal process. So, the process of how we
move people around and how we see this in effect is really
important in how we look at how we’re going to target treatment,
build programs, do outreach. How do we talk to people? Who talks to people? I’ve seen in my own research
that when a black person knocks on a door in
a black community and a white person knocks on a door
in a black community there are two different stories that
come out of that interaction, two different stories, right? And there’s research on this. Scott, an anthropologist talks
about the hidden transcripts, meaning that there’re
transcripts that are spoken, when it’s a group of people
who are disempowered, or historically have
been disempowered. It’s a very different
transcript than the transcript, the public transcript he
describes is a transcript that happens when we talk with
the people who are in power. So it’s two different
conversations. So he speaks of it after doing
research in other countries, but he shows it links from the times
of slavery, and really how the Seoul revival lasted was
the way that the transcript, the discourse occurred in
people who were enslaved, and the discourse that
occurred when those who were enslaved spoke to the masters. So one occurs because
one has to survive. That’s the one that
we have when we speak to people who
have power over us. We say what we need to say. We have different kinds
of conversations. And then there’s a different
conversation that occurs with people who we feel are more
like us, who understand us, and who we feel have empathy for us. And so until we can bridge that
gap, which is what this is about, bridging that gap,
where we feel like we can have the same discourses no matter
what the color of the skin is or the person who
we’re sharing with, we’re never gonna really get
full access to what is it that’s really gonna be effective in
taking care of ourselves. And so because a majority of
the people who do research and do outreach, do healthcare, because of the historic ways
that people have had access to education, we have
to look at that. So I challenge a lot of
the research that has been collected by non people
of color from people of color. I think we really need
to do a good looking at what would happen if we went
back and did some of those same studies with people of color,
matched by race. Would there be
a different discourse? That’s what I’m finding
in my research. I imagine everyone
else would find it, no matter what
the topic area is. This is another one of Dr.
sides, showing what she also, and Rob Wallis,
calls the synergy of plagues. Basically, it’s the same thing
as what starts to happen when these processes that
result in fragmentation of community occurs this
continuous serial displacement that we talked about. The War on Drugs and the whole mass incarceration
that’s certainly a huge way that community
fragmentation is occurring. When half the black men in
the community are locked up, who’s building community? Who’s there left to continue
what the ancestors brought? And gentrification and the
process of what kind of plagues we have been seeing as this
has been occurring, right? And here we are with
AIDS in the early 80s. Okay, so here back in Baltimore,
as far as displacement, we have our history, we have public policy that
funded uneven development. That’s what we talk about
in political economy. Public policy on the west side. We had the Highway
to Nowhere where we had displacement of sev-
>> [INAUDIBLE] >> Oh, yeah, people know about it, huh? >> [LAUGH]
>> I hope you all laugh on the next two bullets. >> [LAUGH]
>> On the west side of Highway to Nowhere,
700 families displaced. And this is just the data, this is the data that says we do
have serial forced displacement. This is it, right? I mean this is
the connecting the dot part. And then we have public,
private partnerships. Again, remember the beginning
slide about government and private interests are really
the folks who are making public policy? And so right here we
have in our own backyard. Well, we have Hopkins’
expansion in the 1950s. That was 59 acres, this project. >> It’s still there standing. >> And then.
[LAUGH] >> [LAUGH] >> And the East Baltimore Development Project in the 2000. Which collectively these two
projects, these two expansions, displaced over 2,000 families,
right. So what I would love to do
if someone would fund me. >> [LAUGH]
>> [LAUGH] Is to trace these 2,000 people, okay. Because this is how we would
really start to get the stories, the narratives that
would inform us, right? Because people will
always say well, you don’t really know the right
cause, you can just say, right? I mean that’s what we do when we
don’t want to look at what we’re seeing. And then the Greater Baltimore
Committee which is a committee in the city which has
since the Inner Harbor and downtown development. This is a great example. These are great examples of
public private partnership that make policy. When people say, well private
people don’t make policy. Not so. Not so. They do.
They influence policy because of relationships from
very powerful funding in ways we don’t even
know that occurs. People who decide what gets
developed, who benefits, what amenities and resource
goes into which community, how do our taxes
get redistributed? These are very
important questions. These are public health
questions, okay? These aren’t just
political questions. This is the Highway to Nowhere. Folks were living here, okay? Those 700 families,
they all got displaced for this highway and
fragmented communities, right? Fragmented communities,
people had to go. There’s a play now going on,
actually, might have just happened
on the Highway to Nowhere. This is a compound. This was after Hopkins’
1950s expansion. There was a public housing here,
okay, Broadway Public Housing, people had to leave, because we
won’t be able to look at poverty cuz we don’t want to
do anything about it. And instead there was
a building for staff. Named the compound by residents
because now they weren’t allowed to walk through it. So there’s all kinds
of fragmentation that happens when we do these
kinds of policy decisions. We don’t think about
the health of that. We don’t think about
what’s the health of that. This is the current project. I’m sure you all know this. This is the new student dorm on
Wolf, the fabulous 929, right? But people were living there,
right? I worked with people and
organized and struggled with people who
challenged this project. And when people say, I don’t
feel good about having to move so they can put a seven-acre
park or a building for Hopkins students,
that has effect. I mean what’s the self worth
of a population of people who continually get displaced based
on what they look like and the amount of money that
they have in their pocket or whether they went to college or
not. Those have traumatic effects
on the body’s ability to weather adverse, everything that
comes against them, or to them. This is some work by Dr.
from school public health. Racial segregation creates
different exposures to economic opportunity and to other community resources
that enhance health. Enhance health produces
differential exposures to health risk. So these ways that we segregate
people into communities of less resource impacts our
health directly and indirectly. But this is an interesting
quote, this is Dr. King in 1960. Depressed living standards for
Negroes are not simply a consequence of neglect nor can
they be explained by the myth of the Negroes and their
incapacities, or by the more sophisticated rationalization
of these acquired infirmatives. They are a structural part
of the economic system in the United States. Okay. This is not new, folks. We might be renewing ourselves
to the reality of it in public health, more recently,
but this is not new. So, basically, I think, I’ve been saying this over and
over again. So what we have to do: policy in
housing, economic development, education, transportation, recreating, criminal justice,
health. Everything has to
have heath in it. We have to think of
health in every policy. APHA’s meeting this year, it’s theme was health
in all policies. This is some work by a nun,
where she puts the call out to say, if this kind
of process of infection was happening In
the white community, it would be a very
different outcome. There would be a different
way we’d think about it. And she really advocates
that the approach then, is to go door-to-door and
to the places where people are congregating with HIV,
meaning basically she’s talking about place space modality of
treatment and access to care. Right. Where you live and the color
of your skin should not impact your risk for
contracting HIV, but it does. But it does. This is Housing Works
in New York City, which I’m a little
bit familiar with. But they’re interested
in the sense, that they look at housing
specifically, and other resources specifically,
for folks with HIV. So it’s not just like, we’ll look at social
service if you need it. One of its main focuses
is housing people. That’s why it’s
called Housing Works. And so they’ve, you see this? They’ve offered housing for
20,000 homeless. And I think this is the kind
of thing we have to start thinking about. The social determince, housing,
people are on the street. The war on drugs’ policies
is also another place-based strategy. Remember in the line of
displacement and fragmentation. So Cooper, in some recent
work that I just did, we showed that increased
police violence, occurs out of these kinds of policies,
these war on drug policies. Increased community
fragmentation through stress occurs, and
Cooper has shown, and others have shown, that police
violence directly effects a person’s ability to use
a needle exchange program, because they get beat
up by the police. They did this work
in New York City. So people aren’t going to use
a needle exchange program, they’re not going to
clean their needles, because they don’t
want to be seen. Because they become targeted,
they’re seen as a druggie. So, there is all these
ways that being poor, living in poor places that
are stigmatized, that the police targets these communities and
everyone who lives there. And that’s some of the work
I’ve shown is that, people are afraid to
congregate on the corner. People say,
right here in East Baltimore, even if you just
stand on the corner, whether you’re involved
in a drug trade or not, you’ll get pulled
over by the police. And so this is one of
the ways that a policy, such as the war on drugs, results in
community not coming together. Community fragmentation is not
a good protective factor for any health benefit. When people don’t
talk to each other, it fragments the community and
people won’t share information. If you don’t share information,
that’s the social network, the social cohesion, the social
capital of communities, affects the health outcome. So I think I’ve been saying
all along our policies need changing, employment,
we need living wages. People don’t have money
to buy a house and live stable in a community, they’re gonna be pushed into
communities that are very poor. We know in those
poor communities, people don’t have
the money to invest. So it´s a cycle of determination
living wage, right. Housing, we have to have
affordable housing. Especially because of the
gentrification that the city´s going through. We´re seeing more and
more unaffordable housing and people becoming homeless. People have to have
healthcare access, we have to have parks and
recreations for the kids. If there is nothing for the kids to do, they’re gonna
do what’s available to them. So how do we think about that,
when we think about how they get exposed, or the potential to
become infected with HIV. So we have to be smart in the way we think about
eradicating this disease. Education has to
culturally competent, and I think that comes with some
of the things I’m saying about the hidden discourse, and
the public discourse. And so how does a white person
become culturally competent in the way to talk to
a black person about HIV? I’m just putting it out there. That’s a whole day symposium,
right? Because that’s about undoing
racism, that’s about white privilege, that’s about
how we hold our privilege, and how we bring our privilege
into interactions with others. And if we don’t even know
how we carry privilege, we’re spilling it all over
the place left and right. And I work with enough
researchers to see how that privilege get spilled over, poured over, all in
the process of doing good. So it’s a huge thing how we
bring ourselves into spaces. Community economic development. Tax incentives. Who’s getting
pulled into cities? Who’s getting encouraged
to come into cities? Is it people who are just
going to treat low income or black folks terribly? Because they think that’s what’s needed to
make a community better? Transportation, we have to
address transportation. People can’t get work. They can’t get to work if they
have to take three buses, and then they’re late, and
then they get fired. Or we move a bus stop, because
we’re gentrifying an area. It doesn’t serve the new
people that are coming into the community. They don’t need the bus. But we have a circulator
bus that’s free, that runs around in circles
into certain communities. We have to rethink our policies. Where are we spending our money? So we change government,
cuz I’m a big activist. We’ve looked politicians
up who are not effective, and not listening to
the people who vote them in. We need to change the city
mayoral government. The mayor decides everything, you have to have a really huge
consensus for the city council, to veto anything that
she says or signs. We increase transparency and
accountability, and we set term limits. We’ve got people in office that
have been there way too long. Don’t we?
And we have to organize community. This is a huge, huge issue. Our communities are fragmented
because of this whole process of dislocation and displacement. We have to make an effort,
if our communities were more organized, our communities
wouldn’t be so ill. Look at the communities
that are healthy. They’re organized,
they have processes in place. If they want something,
they know who to go to. They go and they talk to their
city council people, and their city council people
actually listen to them. That’s because they have power, that’s because
they’re organized. Our communities of color and
low income we’re not organized. We can have ten community
organizations in a block, and if you all do work here or
live here, you know that. That is a fragmented process,
that does not allow power to take and do what it needs
to do for that community. And once communities
are organized, they have to have
decision making power. We have a lot of processes, this whole community based
participatory research. It’s a great thing in words. But if people aren’t
actually making decision and directing what gets done, it’s really just another
superficial level of engagement. People have to make decisions. We cannot just put community
faces, and black faces on boards, and then show them to
funders so they can get funding. It’s not right. It’s an injustice. And people have to start
thinking about the morality and the ethic of public heath,
that’s part of it. Doesn’t justify it,
because you get funding. If you’re gonna engage
community on the board, they have to have
decision making power. And if they don’t understand
the information that’s there, that is being discussed. Then there needs to be an
educational process, so they can become fully informed so they
can make informed decisions. It’s not enough to say to
quickly get a decision shake your head. These things don’t work,
we’ve been doing that for years. How do we do this? We organize. Right? This is an example of the Hopkins employees working or
challenging Hopkins for a living wage. So like I was saying
at the beginning, we start right in our house. If Hopkins isn’t paying their
employees a living wage, how could we ever expect the
social determinants of health are being addressed in our
own health institution? It’s incredibly ironic and
we’re okay with that. So, every single person
here who works or has some engagement with Hopkins
should participate in making sure that the institution pays
its employees a living wage. Because a living wage is
a determinant of health. So, how can you advocate for
living for health if you’re not willing To challenge your own
institution to walk the talk. It doesn’t make sense, right? It’s not personal. It doesn’t make sense. Why are we having this symposium
today if we’re not willing to look at those hard issues? If not,
I’m just wasting my time. You’re just wasting my time,
and I’m wasting your time, and we can have this symposium
every single year, and I won’t come back anymore. Not that that matters, right? But really we have to organize,
right. And,I like this because this is
doctors and students rallying with community, with low income
workers, saying that it’s right, it’s time,
we gotta do the right thing. And this is not new. Civil injustice in
our institutions have always been there. It’s just wether or not we’re
willing to take it out. This is hard to see,
but it’s a schematic sort of finally saying that it’s
really the economic capitol, the political capitol,
the social capitol. All these things within here,
really determines a presence and access to what we normally think
of health access and healthcare. Whether or not we have equitable
employment, whether we have safe places for our elderly
to be able to exercise. These are all determined by this
whole process, this structure, these systems. In effect it
determines our health, our lifespan in our
neighborhoods and whether or not we’re going to be exposed,
or feel pressured to do the things that might
expose us to acquiring HIV. Thank you. [APPLAUSE]
>> Does anyone have any questions for
Dr. Gomez? Reverend Hickman. >> So Dr. Gomez, I really, truly
enjoyed your presentation and it’s very, very real. But, I don’t know if
this is a question or a statement because as you were
talking about having power and not being oppressed, is there
such a thing as self suppression today and is there a study that
actually is showing how to balance out the inequalities
with the opportunities that our communities have had and
still not have taken them. In the span of three short
years that our organization has existed here in East Baltimore,
what I have witnessed is, is that there are communities
that have leaders that have been in place for so long that
they are the problem and not so much the power. And, I’ve witnessed the fact
that there are political leaders that have responsibilities. And we could go back and
count the millions of dollars, probably the billions
of dollars, that have been infused
into our communities. But people that look
like me that had power, have not utilized that
power to its people or its communities, and I think if
we’re going to have power today, we need to understand the
inequalities from the white man as well as the inequalities
from our man, and how it has suppressed its own people, and
how our people have become sleepy in the process and they
almost are living without hope. And so they don’t strive
to actually do the best that they can. Instead they play some game
that’s self-destructive. >> Thank you for that. I think that’s part of
the internal journey. The part where we
look at our stuff. And I think there’s a roll, one of the reasons I mentioned
voting everybody out. If you look at our city council,
there’s a lot of black folk on that council who’ve
been there a long time. What have they been doing for
our community? How did they sell
out our community? And so how to individuals
participate in that? But I also think
that we have to, and the reason I talk
about the structure, is that, the structures create
the systems that we play in. And so why do people,
why is there so many fragmented communities? Why is there a block that has
two community associations? Why is it that
people feel the need to hold on to power like that,
and claim power like that. It comes out of a history. And I would put forth that, that history has a lot
to do with trauma. And there is a whole
research literature on the effect of trauma
from racism, from slavery, from a history of oppression
that people haven’t healed. And I think there at least needs
to be whole lot of healing in our communities,
within ourselves. And I think the same
healing needs to occur for white people as well. Because racism doesn’t have
an effect on black folks, or folks of color. Racism is so inhumane that there’s also
literature out there that speaks to how the ability to
segregate and make decisions that discriminate has an effect
on the psyche of an individual. And being part of a white system
that consistently discriminate, that has an effect on
the humanity of people as well. So not only
are the perpetrators effected, it has a health effect, but
also the people that receive or the other end of that
discrimination, that racism, that classicism, whatever it is,
are having an effect as well. So I think it’s a very
relevant question. I think it’s one that we in
our communities of black and brown need to
challenge ourselves. We can’t be afraid. We’ve been this space where
well we haven’t had any, so we’ll, it’s okay for
us to do. Now you’re bringing up. I always get on about misogyny. The way in black and
brown communities, we treat women of color. I have a real issue with that. How we don’t step up and
say, no, we can’t do that because we’re
still living that past of how we feel the black man was enslaved. So, I completely understand
what you’re saying. I do think, though, that the structure of the system that
is in place holds everything, it’s like a glue that
holds everything in place. And until we start to
opening up that system, and looking at the causes, and dismantling it, it’s going to be
really difficult for the people embedded in that system, that
have acquired some of the ways, the personality, the traits,
that they have today because of the way that
system was structured. Right. And that doesn’t remove just
kind of the inherent lackadaisical way
some of us are. Because that’s that. We are humans and
we are not enlightened yet. So we still have our
own personal stuff. But the structure that puts in
place on top of our own personal foibles or insecurities, those
are the pieces I think that as a professional who’s doing
this work, we have to get into. >> Thank you
>> You’re welcome. >> Any other questions? Curry and I came late, so if you already addressed
this then were talk after. >> Okay.
>> I’m curious about, I’m kind of thinking about
the non profit industrial complex and
how it’s motivated by similar structures that we need
to deconstruct right? So. I wanted to hear your thoughts
about who are the actors and initiators and the people who have sustained
this level of change? Is it possible that it will
be our non-profit agencies, even though they are deeply
dependent on money resources, political capital, power,
and all of those things. Or is that going to have to
take place with another group of people, a more
grass-roots kind of people? >> You don’t really want
me to call names, right? [LAUGH] I mean I have
the names but, I think. Well first of all, I feel we are the change
that we’re waiting to see. I inherently believe that, and that speaks of what
you’re saying is, as we are part of the problem,
we are part of the solution. That said, again getting back
into the structures, no, I don’t feel that the non-profit sector
is going to be the one that take us out of this, because
that’s again this reliant and this white savior mentality, and it could be a black head
of that organization. Whatever, it’s still set within
a structural system of white privilege and white supremacy. So that whole system
needs to be eradicated, you know putting faces of color. And, here I can drop some names,
but I will not do that. Into places of position of
power doesn’t alleviate the problem, right? We have to get at it
at the structures. The non-profit sector, the
non-profit industrial complexes, as you say, data shows what
they do with that funding. Cuz we gotta think about
the philanthrophies. Where have their
monies come from? It usually comes out of some
kind of capitalist exploitive system. Now there’s more who say
the kind of capitalist work and ventures they’re doing, that
they’re investing more wisely, more humanely,
green this, all that. But when you still look at it, there’s some process of
exploitation occurring. Capitalism says we
have to exploit people. We need dispensable
pool of workers. That pool of workers happen
to be the people who are most vulnerable in our society. That happens to be black and
brown and poor people. So we have a system
in place that will always perpetuate that. Philanthropy money comes out
of a system of exploitation. So first we just
gotta get that right, we just have to understand that. And then once we understand
it then I think we have to look individually at
some of our non-profits. I mean the non-profits
in Baltimore, Annie Cayce Foundation, I mean
they’ve participated in this whole gentrification process,
right. They use their name and their
good status as a family and childrens program and
process to bring status to Hopkins even though
Hopkins had a reputation for doing gentrification
in the past. People thought oh, the Cayce
Institution is involved so this must be a good thing. I think that’s a great example
how the non-profit sector gets used and allows itself to be
used in order to continue it’s role in this capital framework. Because, you know, they have
board members who are very rich people who donate money. We gotta look at where they’re
getting their money from. So the short answer is no,
I don’t think that they will be. The longer answer is, I think they’re as much a
political animal as any sector, they just happen to have
the non-profit status. They need to start paying
some property tax and they need to start paying
some money into the city. >> Yeah
>> Because if we actually assess the amount of money
the city would get from all the tax benefits and loopholes
that non-profits get, and there has been some data
to show how much that is, we would actually be
a little further ahead. But that’s my short answer. >> [LAUGH]
>> Thank you so much. What a powerful talk. As we started off this morning
talking from moving from a series of transactions
between community members and researchers. To talking about transformation
within the context of full community by looking
at things like housing, unemployment, education,
transportation, race, we need to talk
about these things. And that’s why we are here
today on Hopkins campus. I read, last night,
I was reading the DC Blade and reading a little bit about
the trans community in DC. And I know we could
say the same thing for the trans community here in
Baltimore, 51% unemployed. A third engaged in sex work. We know that if somebody’s
engaged in sex work, they’re 48% more likely
to become HIV positive. We know, and this is where I
think my heart was breaking as I was reading this, that our trans friends have high
rates of assault and harassment. 74% verbally assaulted,
42% physically assaulted, 35% sexually assaulted, and as I was thinking the context
of walking in today, we are here as a part of this
community to do our something. And, to figure out what
our somethings are and do it well in collaboration
with each other. We cannot go at this alone. And so as we talk about those
social determinants this morning, we’re gonna talk and
transition this afternoon, talk about real models and real
people that are doing things about addressing inequality,
racism, models of addressing poverty. And it goes on
here in Baltimore, people that are choosing to make
a difference and choosing to do their something because they
have been placed here for such a time as this. You are not here by accident. So as I introduce our
next speaker, Dr. Patrick Chaulk,
the assistant commissioner of the bureau of HIV and
STDs for the city of Baltimore. He co-chairs the HIV commission,
the planning group. He’s a member of the Greater
Baltimore HIV Health Planning Services, a pediatrician and the
list could go on and on and on. But I believe, more importantly,
is that we talk about different politicians or elected
people here in Baltimore. We have a man that is
here that serves us, that wants to see all people
restored back to community. And I am so grateful that not
only can I call him a colleague, the assistant commissioner,
but more importantly a friend. And so with that I would
like to introduce Dr. Patrick Chaulk as he talks about
contextualizing this work in the city of Baltimore. And how we can, and we are here
to talk about these things and brainstorm together about
ways to move forward. So with that, I’d like to have
Dr. Chaulk come up and join us. >> [APPLAUSE]
>> Like this one. >> Yep. Well, good morning and
thank you very much. Where is Jordan? I’m gonna kill him. >> [LAUGH]
>> He makes me follow her, an old white guy. That’s just not
gonna work folks. I’ll try my best though. I’m supposed to provide
contextualizing view of the city but I’m probably going to stray
a couple times with how I put this together because I
really want to build on Dr. Gomez’s points. It’s a very provocative
presentation, so thank you very much for
what you did. Give you some numbers, the 2013
census shows that the city of Baltimore has a population
of a little over 620,000. African Americans
account about 65 or 64 percent of that population,
but the sad note is that 85 percent of the HIV infection
in this city that’s diagnosed, is among the African American
population. And most people don’t know that
49% of the people infected and living with HIV
are over the age of 50. So, we’re seeing a real change
in the demographics of the city. Both in terms of the effect
of good treatment, which is allowing
people to live longer. But we’re still seeing people,
new infections, in their 60s and 70s every
year in the health department. So we have to think about when
we wanna work on prevention and messaging, that we don’t think
about a limited population, but we talk about everybody. Actually, this says 13 4, but
it’s probably more like 14,400 people living with a diagnosis
of HIV in the city. And probably 15% of
the people who have HIV really don’t know it. So they’re poised to
be a real source of infection among other
people in the city. The state estimates that
that’s about 8,000 people so we really have a lot of people
that we need to reach by testing and linkage to care. Ryan White which is the federal
program that provides coverage for those who are uninsured or
underinsured. About 9,000 people in the city
of Baltimore receive those services. So that’s a really important
program in terms of serving them. Their needs are diverse,
as was mentioned. Temporary housing, because they have unstable
housing quite frequently. Mental health needs, substance
abuse needs, emergency financial assistance, food assistance and
copays for their insurance. Even though we think we’ve got
the insurance thing figured out, we really haven’t. So a lot of those tend
to be really strong and tough issues for us. This is a trend I think
everybody’s seen, that the really important trend
has been a decline in the number of new infections among the
injection drug using population, and that’s largely because of
our syringe exchange program, which this year is
in its 21st year. We work in 14 different
neighborhoods around the city. It’s a mobile program,
it’s in vans, we make 23 visits
to those cities. Our staff has really developed
relationships with each of those communities which are among the
poorest in the city, the most underserved, blighted areas that
we continue to support somehow. But at least our syringe
exchange is out there meeting their needs. We also try and provide
things such as wound care. We provide family planning, and
reproductive health services, and immunizations
during the flu season, particularly on the block
where the commercial dancers really don’t have access
to a lot of other services. So the other trend of course
is the new increase in HIV infections among
the the gay men, or men who have sex with men,
primarily among young black men. So that’s a really important
issue for us in the city. You’ve seen the cascade, we have
about a third of the people in the city who are HIV infected
with suppressed viral loads. Meaning, they’re
where they should be, they’re gonna be healthier. We have to do a much
better job at that. With the Ryan White population
it’s mostly around 60%. So Ryan White seems to be
doing a pretty good job about getting people to
suppressed viral loads. I give these numbers with
some reluctance because we forget what these numbers
are really all about. We tend to say, well we want
to see those numbers improve. We don’t want to see
the numbers improve, we want to see
the people improve. A British statistician once when
asked what a statistic is said, it’s a human being with
a teardrop removed. That’s really what it’s about,
so when we run through
these numbers and get focused on our calculations
and our regression analysis and all that kind of stuff,
this is really about people, and we’re talking about
the poorest people and the most marginalized
people in the city. So that’s why this conversation
is really important. I’m not gonna go
over these goals. I wanna talk about two testing
strategies to lower the number of people who are undiagnosed
but have HIV infection. There’s two main strategies for
testing. One is targeted, for high risk
populations, and one is routine. Routine hasn’t really become
quite routine yet and we’re trying to make that
possible in Baltimore. Targeted testing, we realized
through focus groups with our outreach teams and with our
partner service interviews, partner service workers are the
people who go out and interview newly infected folks to try and
find out who their recent partners are so that they can
be screened and served as well. The information was that many
gay and transgender youth were unaware of how to access
testing in the city, despite the fact that we think
we’re providing testing all over the city with our vans. HIV positive clients did not
seek care for fear of stigma. That should come as no surprise. HIV still has stigmatizing
issues with it. Sexual and social networks
were frequently linked to what is called the House and
Ball Community. And the House and
Ball Community is basically, who were a group of folks who were
disparagingly in the 1920s and 30s called drag
queens in New York. It’s been around for
a long time. It’s primarily East Coast,
New York, New Jersey, Philly, Baltimore, and DC. There is some on the West Coast. It’s comprised of, basically, gay men of all ages who compete
in balls for prizes and status. And they compete for costumes. They compete for look. They compete for
a number of things. But they belong to
different houses, which are usually named
after cosmetic or other sort of, like Dior and
places like that. And so they tend to be people,
the houses are virtual, they’re not real. And they are a group that we
really wanted to engage in the city. I first became aware of the
House community back in 94, 93. We had an outbreak of TB in one
of the local clubs, Club Buns. And in doing the investigation
we found out the dancers were in Baltimore, then they moved
up to Philly quite soon, then up to Jersey, and
then up to New York City. So from a public health
standpoint it was an absolute nightmare to figure out how
do you work across these jurisdictions to identify
people that were exposed, should be tested and treated? Well, we did and things
came to a good conclusion. But it was largely because of
the staff that we have who know how to interact with just about
anybody and are very trusted in the community, so it worked
out actually very well. But that’s when I first
got exposed to them and then I didn’t realize it again
until I came to the health department and now we’re
really working with a large House coalition in the city. So we created what was called
Know Your Status Mini Ball. And the ball was designed to
get people to get tested and know their status. And it started in 2010, we’ll have our sixth ball
next Saturday the 21st. The ball has a competition part
but we provide testing for HIV and STDs. We provide linkage to care. We provide certain social services such as
housing assistance, healthcare. Access Maryland does enrollment
for insurance, college info. And then surprisingly, this last year we actually had
the police department there. Not to be police, but
they actually had a table. And they revealed their
latest LGBT outreach team, which was created in response
to the three murders we had in the transgender
community last year. And we’re also offering
opportunities for people to find out about jobs
at the police department. So that’s pretty amazing,
I think. So this whole ball has been
really a great opportunity for us to reach into this community. You’ve referred about doing
community engagement and community outreach, this is one
of the opportunities where we’re really trying to do this. This is also important
from a testing standpoint. If you look at our testing
at the STD clinics, in the emergency departments,
in CBOs, the positive rate’s about 1% or
1.1%. You can see here that the new
infection rate is between 4% and 7% each of the years
that we’ve had this. These people were then
immediately linked to care. We provide same-day
transportation for newly infected folks once
they get their diagnosis. So it was important for us to provide the proof that we
really felt was important for you to be in care, and that we
were gonna help you do that. Also out of this came
the status update campaign, which they created themselves. They worked with Mika to do
the advertisement on this. They had their own
focus groups and research conversations about
how they wanted to do this. The overall themes were really
to connect with the ballroom community and promote, again,
knowing your HIV status. So there were nine
models who posed for these different posters and they
were placed around the city. We wanted to put them on
the city bus and originally they said yes, but then when they
saw the poster they said no. And then we did the cabs,
and they said yes and then when they saw
the posters they said no. The person at the stadium
TA said well have balls, get tested,
that’s a terrible phrase. >> [LAUGH]
>> Well, actually it was their choice,
okay? That’s what they wanted to use. So not too long after
this rolled out, then Commissioner Barbo gets
this call from a local priest. Couple of you have heard
me tell this before, but I’m going to tell you again. And so they gave it to me,
gave it to he’s the HIV guy. And so I said hello, and he said
this is Father so-and-so and I just wanted to comment that
I’m really not very pleased with what you’re doing with this, I’m really trying to get
our youth not to have sex. Good luck, and so we talked
a little bit longer and he said this is just encouraging
people to go out and be more promiscuous. And I said well,
here’s my offer to you. I’ll take these down if you’ll
do something for me, and he said, well what’s that? And I said if you’ll go
through the poorest inner city neighborhoods in the city
of Baltimore and remove all the liquor ads that
are up on those billboards that have women barely clothed
and men drinking snifters, and the obvious messages is
get liquored, get laid. And those billboards
aren’t in my neighborhood. But you know where they’re at,
and I think it’s, again, this place matters comment
that you’re trying to get at. So he said, okay, no thanks, and that was kinda the end
of that conversation. But I think it talks again about
how we look at this stuff. This is a prevention message. That other one was not
a prevention message. This is one created
by the community it’s intended to reach. That other one was created by
the community it’s intended to reach as well, but they’re
different messages completely. So here’s Status Update. We have a website for this. You can go to it. It’s called And it has all
the upcoming balls. Information on HIV
prevention and testing, STD prevention and
testing. And there’s a Facebook on there
which I don’t know what that is cuze I don’t have Facebook. And then, routine testing is
a new project that we started about four years ago. It’s called Protect Baltimore. We do that with
the Hopkins Center for Child and Community Health Research. And it’s an innovation
grant from CDC. It involves a couple
of components. HIV mapping throughout the city,
and identifying what we call
high-transmission areas. And that calculation’s
essentially based on prevalence, incidents and viral load. The overlay of that is we
mapped physician practices, and created testing kits to take
out to the private physicians in those high
transmission areas. The testing kits have everything
you want to know about HIV, what the tests do, what the tests
mean, how do you counsel people? It had a map of their community
that showed what HIV looked like in their community. And that was a kind
of an eye opener for them because most people thought
HIV is some place else but no it’s right in our back yard. It also had a component for
billing. So the outtake has been that
we’ve used public health detailers, which are like
pharmaceutical detailers except we’re actually bringing
a good bill of goods and not just drugs to
the physician’s office, and visited all the physicians,
family practice docs, and internists in those high
transmission neighborhoods, which is about close to 200
physicians that we reached. And this is a map of the high
transmission areas and very high transmission areas. And so what you see is essentially that
50% of the census tracks in Baltimore are either high or
very high transmission areas. It speaks a lot about
what we have left to do. And I’m glad you presented the
data because I didn’t want to have be the one to
present that [LAUGH] which we always do all the time. So thank you very much. I also had a map that looked
at poverty and HIV and I couldn’t find it cuz I actually
put these together last night. But as you might guess HIV laid
right over on top of poverty. And if you look at
those zip codes, it’s all the stuff that you
talked about, poor housing, low employment,
low educational status. So we’re talking about, it’s
place that we’re concerned with that we wanna turn the needle on
any of this stuff including HIV. We have two new grants I wanna
talk about just briefly. We have a PrEP expansion
grant that is allowing us to focus on PrEP among young,
gay black men. Right now if we look and
see who’s using PrEP, not very many people are,
it’s almost all white, gay men. And when we interview the young, gay black men they
don’t know about it. They don’t know their
HIV status cuz they haven’t had access to testing. If they get tested and they’re positive, they’re less
likely to be linked to care. If they’re in care, they’re
less likely to stay in care. So there’s a lot of reasons for
that, most of which relate to the mistrust of the healthcare
system and how it’s perceived that they will be received
when they go into services. Is it gonna be a welcoming
environment for them or is it not? Odds are that it’s not
gonna be that way. So this is intended to
really begin to create a much more PrEP friendly
environment for gay and transgender people in
the city of Baltimore. This is what this looks like for
this grant. It’s a collaborative. It’s really, we think, the first
time that we’ve actually seen a city-wide collaborative of the
major players involved in HIV in this city, both the providers
and the non-profits. We have a social
marketing strategy. We brought on
a social innovator, who’s already doing a lot
of really creative stuff. Comes from the private
sector before, but a lot of public health work. He just finished training at
MICA, and its helping us begin to think about how do we address
stigma in the community. How do we create messages that
can resonate with the community? Who’s the messenger? We can create great messages,
but depending upon who
the messenger is, not going to make
any difference. So we’re trying to think
through all of that. There’s another one
that’s a PrEP wraparound. That’s the same thing, focused
on young, gay, black men and transgenders. But it brings much more in
the way of social services, thinking about housing,
mental health, substance abuse, other needs that these
people might have. So the outcome of this over a
four-year period is a hope that we’ll actually reduce
transmission in this population. We hope to hire, not we, but
the partners will hire about 65 people from the community
to be part of this. Peer navigators,
linkage to care people who will come from the target
community and be part of this. We realize that a lot of these
folks probably are not gonna have a very strong or
solid work background. We’re gonna provide work skills
training and job training to make sure that they stay in
the job that they get into. So that the leave behind will be
that these guys will be ready to take on some other job
after this is over with. And that they don’t just
fall off the chart again and become lost in the system. We’ve also identified
a number of ethical issues that are involved in this. So we’ve brought on an emphasis
from the bioethics division at Hopkins. She’s a pediatrician. She’s looked at some of these
issues, we’ve had some great conversations with her and we’re
beginning to talk about things that we’re going to have to
address as part of this work. We’ve brought on an attorney
from the Maryland School of Law to help us with some
legal issues that we think are gonna come up. So we are looking at
this very broadly. This is not what we would
consider a standard grant going into the community and
doing stuff. We’re trying to
engage the community, bring the community into
the decision making. We have to create
a community advisory board. So we’ve got an awful
lot of work ahead of us. But I think it’s been thrilling
so far, from the standpoint that everybody that’s in this really
seems to be in it for the right reason, and seem to be committed
to strong outcomes for the work. So, there’s another Baltimore
that we should talk about. We’ve already heard a little
bit about it from Dr. Gomez, but I wanna make sure
that I talk about this. So the census again,
same people, 621,000 people. But if you look at the Baltimore
city health preparedness report card that was produced in 2013 the all cause mortality
was significantly higher for the city wide than it was for
Maryland average. All conditions specific
mortality for 11 conditions were significantly higher than
for the Maryland average. Racial disparity, and you lay
that over this shows significant obviously outcomes
on that as well. And we unfortunately are the
number two city in homicides this year right
behind Saint Louis. So again, place does matter. It matters an awful lot. Life expectancy varies
significantly by neighborhood. You have some neighborhoods
that have life expectancy of a third world country. Others by Eastern European
industrialized company, countries. And in 19, excuse me 2013, six
zip codes alone accounted for 50% of the new infections
in the city of Baltimore. So, if we’re gonna get real
about doing something with HIV, we’ve really got to follow what
Dr. Gomez says and walk out of here, and actually continue
the discussion and do something. Cuz this isn’t gonna get solved
by sitting in this room and hearing some conversations and
presentations by people. And then we walk out and
go by Starbucks, and get our coffee, and go home. This is really important stuff. And I think if we
take HIV as the tip of the iceberg, we’ll see that
underneath it are all these things that you’ve
heard this morning and we’ll hear in the next
presentation as well. So I really wanna thank you for giving me a chance to speak
with you today, and I’m looking forward to another presentation
from the next speaker. And thank you Dr. Gomez. [APPLAUSE] Thank you, Dr. Charles. Does anyone have any questions? Easy questions. [LAUGH] I just had a question
about those zip codes. Yep. How it accounts for 50.4% of the new infections. I don’t know if you know
those zip codes, or where I can find
that information. Well, I don’t have it in my
head, but I can get it to you. Okay. Yeah. [CROSSTALK] Well, you can get. Yeah. Yeah. And it’s actually of course,
a focus for our work as well doing a lot of
follow up in there and I think the theme of this conference
really should be place matters, because all of this stuff is
geared to where people live. And unless we think about that,
we can create a unique service to reach somebody, but
that unique service will not get to the bottom of the real
topics that are involved. I would just add this, medical
mistrust is a huge, huge issue. I had the opportunity in a
previous life to work with some immigrant and minority neighborhoods
around the country. And that issue came up a lot. I was doing a TV project in
Seattle that involved Ukrainian, Bosnian and Somali communities. And we did a lot of work
to enter those communities, working with community
associations. And we were trying to sell the
message that they needed to be screened and skin tested for TB,
because that’s where most of the TB was coming from in
the city, the active TB. And we did some focus groups,
and these were people that came
from refugee camps in Somalia. And one of the guys said,
because they felt fine, why are you testing us? They told us in Somalia after
we took our chest x-ray that you don’t have TB. Well, that was the wrong thing. They should have said you don’t
appear to have active TB. But his comment was, now we understand what people
meant when people told us that doctors in America like
to experiment on people. So that came from
somebody in Somalia. So think about when it comes
from somebody in East and West Baltimore. So those issues on how
healthcare systems is perceived, and I worked with Haitians,
Caribbean folks, African Americans, Mexicans, East Africans,
it was all the same thing. Everybody had raised questions
about how much trust do we have and how we’re gonna be perceived and
treated when we go in for care. So we need to be thinking about
that with the project that we’re talking about now. Just having PrEP available and giving a message out doesn’t
mean these folks are gonna say, oh, I guess I gotta go on PrEP. We have to figure out what
the mistrusts are that have been there for decades that
we need to address and talk about openly. So you didn’t ask that, but I thought I’d use
the opportunity to say that. I see another question. My name is John, and I was going to ask you the same
question you just answered. So, sorry. You can ask a different one. So if you want to take another
bite of the apple, let me phrase the question a little
differently on the same subject. You’re a physician, I presume, if you would give a prescription
today to the folks in this room about improving trust
levels in our services, what would you tell us what
are the top three things? Well, for me, the first one is you have
to be very open and honest. People could sniff
that out in seconds. And so that’s the way I was with
the communities I worked, and it worked very well. And I always would say if this
old white guy can come in here and do this,
it’s gotta be pretty obvious. So I think that’s
really important. And it’s like relationships and
other things. It’s your job. I mean you’ve gotta be able to
be open to a certain extent and be honest. And if you can’t do that
then anything else you do is going to be
jeopardized by doing that. And if you promise something
you better deliver. In the neighborhoods I worked
in if I said we’re gonna do something I made
damn well sure that I did it because I’d only get one
shot at it and that would be it. And I think you need to be
willing to work with people where they are. My work was more about trying to
help them solve their problems, and not tell them how to do it,
and not throw money on the table,
and be responsive to what they
thought they really needed. Lots of times the issues
are on building capacity in these organizations and
communities. They’ve been disinvested for
years and grant makers wanna come in and
throw a grant on the ground, and everybody’s scurrying around to
figure out how to get the money. And then they make it
grants-competitive, and so it goes against building
partnerships and building trust in the community. We’ve had that for so
long in Baltimore, you can’t get people in a room who wanna
say we’re willing to kinda work together on this issue because
they’ve been forced to compete in the past and
that’s something new. So, I don’t know how
well that answers, but that’s the way I would see it. Any other questions? Carmen? Sure, I have some questions. I’m one of those people that
put the first presentation with the second presentation, and
sit back here and question, and don’t, I’m not putting
anybody on the spot. First I want to just
applaud both Dr. Charles and Dr. Gomez for
incredible presentations. And the way they lined up
together the question comes, so where are the programs for
women? And let me back it up to Dr. Gomez’s presentation where
the slide was put up. And it said, 31% transmission
rates among men and MSM, 33% amongst IBU, it wasn’t
mentioned, the 31% amongst heterosexual transmission, and
then Dr. Charles put up that having PrEP that’s targeting
MSM and transgender. Dr. Gomez said though, said
though that 50% of the men in the black community
are locked up. So why are we targeting people,
and I’m looking around this room? So even at the makeup in the
room, where are the programs for women who are bearing burden,
who are bearing the burden of people being
locked up, of being out of jobs, of having children where
there’s no child support, of finding homes when
you can’t get loans, of doing double jobs and
not being able to pay daycare? Where are the programs with all
of the money that’s coming in that’s targeting women? [APPLAUSE] I guess I should
let the women answer first. [LAUGH] Even though these grants
don’t support directly PrEP for women, that’s clearly part
of what we want to do, because with discordance
couples and their Both sexes. We want to make sure
that’s an option for a woman to protect herself. So we’ve been talking
with family planning for example which is not funded for
this but we’re gonna talk about at least
providing training on prep there so that the young women who
come in can be aware there is the opportunity for them
to be prep recipient as well. Certainly we’ve worked
with senior centers on HIV testing and that’s
included lots of women and my story on risk in Baltimore
involves we had a sex and seniors conference like three
years ago at The Waxter Center. We had about 300 people show
up which was surprising. It was about 50/50 40/60
something like that. And during the break an older
African American woman came up and was talking with me
and saying it was really good that we were reaching out to the
seniors and to the older women. She said I was married for
many years. My husband was struggling with
an illness and finally died. And like after a year and a half I just wanted
some companionship. So she started dating
this guy from her church. And they didn’t use protection
and she got infected with HIV. So I think the issue of
raising the women’s issue is extremely important because
they may be among the most vulnerable because their male
sex partner may not just be their only partner, or you
might not be his only partner. So I think that’s why we’ve been
talking with family planning and also department of
social services. About a third of the people in
Baltimore actually go through the Department of
Social Services each year. We’ve been having
a hard time getting in there to provide
training though. I think there’s a new director
and so we’re going to try and revisit that again. But I think that what we don’t
want to do is by emphasizing what I said that we’re going to
drive a wedge between groups. That’s the worse thing
that can come out of this. This is a community issue, it’s
a city issue, it’s tied to all the things that were said this
morning, well beyond healthcare so I think you should be
continue to push that issue so that we don’t forget it, so it
doesn’t fall on the back-burner. But we’re gonna get there I
think, I’m really hoping that through conversations like
this that we can generate some action, not just a response,
that something good will happen. That’s the guy’s answer. >> I think we have one more
question in the back and then we’ll have to transition. >> I’d like to just reiterate
what you said because we don’t want to drive wedges between- >> [COUGH]
>> [INAUDIBLE]. That support from all
of affected areas, particularly in the city. I hope we’re basing that
support based on the data and the numbers, speaking from
the MSM community and from the number of young black
men, particularly in this city who died over years and decades
and we’re finally focusing our efforts and support on
trying to reduce those numbers. But also recognizing that
other effected areas, particularly with young and
older African-American women and how they’re effected, and how we
can address that cooperatively as we move forward
in addressing this. For all of us and hopefully
programs like and others as we continue to research, it will
help us to do that [INAUDIBLE]. >> Yeah, and I think that
the political experience of this country is, when the government
doesn’t want to support what you’re doing, they try and
break you up into groups. And that happens all the time. It’s every year,
it doesn’t change. So I think we need to
stay united on this and not leave anybody behind. [APPLAUSE]
>> Thank you so much. I see your questions, I think
you can grab him at lunch time if that’s okay,
we need to move on. Thank you so much Dr.
Shock for your presentation. And Carmine, you need to meet
the woman right in front of you who is running
an outstanding program for single moms with kids
between the ages of 18 and 24 addressing homelessness and
housing. So Hillary, Carmine you guys can
get together afterwards too. So I would like to introduce. A dear friend of mine,
Carlton Smith, who will introduce
our next speaker. Carlton is the vice-chair for
the Johns Hopkins Center for AIDS Research Community
Participatory Advisory Board. And the chair and
executive director for the Center of Black Equity. And more importantly, my friend. So come on up Carlton. >> Thank you. [APPLAUSE] Thank you, Mayor. I was gonna use that. >> Okay. >> Thank you.
That’s okay. I’d like to introduce
the next speaker. He’s a good friend
of mine as well. We’ve know each other for
quite some years. Matter of fact,
I met him as a program director of when he
was working for GLAAD. And now he is the executive
director of Color of Change. I’d like to introduce
Rashard Robertson. Y’all can put your
hands together for him. [APPLAUSE] He is
also the only black gay man that’s running
a civil rights organization. I’d like to put that together. [APPLAUSE] Mr. Rashard. >> [APPLAUSE]
Thank you for that Carlton, and
it’s a national, the only openly gay leader of a national civil
rights organization, just in case there’s like anyone here
that’s like I know a person! But thank you to that,
thank you to Jordan for the invitation and his
leadership and to all of you. It’s great to be here in
a room with people who are dedicated towards action and
new discoveries. And just as much dedicated
to promotion and stewardship of what
we already know. People dedicated to delivering
the best quality and smartest healthcare solutions
from what we already know. And what we should be providing,
fighting for those solutions, and fighting for what works for
who needs it the most. So I believe in a color of
change, we are a community of over 1.3 million black folks and
their allies of every race. We take on major actions around
the country, bringing people’s voices to make our democracy and
our economy work. And we believe that one of our
greatest challenges of today is that we have not realized a true
culture of care in this country. And so therefore so
many of our solutions and recommendations and arguments
don’t have nearly enough momentum behind them to get
us to where we want to go. It is why we concentrate so much
on momentum in our campaigns. Especially being clear and
uncompromising about our failures on race and gender and
what we need to do about it. Having enough momentum. For us, that’s a question
of cultural power. In system wide
social change work, the scale of our impact is
greatly influenced by the degree of the shifts in our
overall culture. We cannot solve problems
absent of larger cultural problem solving,
which motivates the symptoms, everyone participating
in forging solutions. You cannot truly deliver
healthcare to all those in need, let alone prevent the need for
acute care in the first place. Absent a larger culture of
care in which everyone is always looking for opportunities
to challenge inequity and solve for it. Always looking to make
all people healthier. The culture of care must be
prismatic, both expansive and inclusive. Seeing LGBT concerns and
black concerns as connected, because in so many instances
they are the same people. Seeing people of color concerns
and women concerns is connected because black women and brown
women have concerns on both accounts, just like immigrants
are also disabled people and their families have
needs on both accounts. All of us have so
many colors running through us. It’s amazing how many needs our
system can fail all at once. Bold actions on the part of
some can pave the way and help set new standards and new
roles for how to move forward. To show what the future
should look like, to illuminate
an end goal vision. But incentives are truly
what motivate people to move in
the direction at scale. Everyone here is
an agent of change. A force providing health
care related to HIV and AIDS without the type of
delays and red tape and restricted resources and
racial and gender bias. That is factored so greatly
into keeping HIV alive for so long, while millions
of people die. But there are big historical,
cultural and very profitable forces
that are in our way. I would ask you plainly, as you look at conditions today,
what incentivizes a public official with budgetary power
to not care about black people? And therefore not to invest
in black people’s health because that is
what’s happening. What incentivizes a drug company
with the power to cure not to care about black people and therefore not invest in
black people’s health. What incentivizes some hospitals
with the power to care, not to care about black people
and therefore not to invest in our health,
because that is also happening. We know that money is
an incentive that And enforced laws are incentive,
reputation is an incentive. But social pressure
is also an incentive. We have to influence what people
in authority value and devalue. And they have all
points of influence. The cues we all send about
what’s okay and not okay, how we react to things and how
comfortable we are ourselves in talking about race publicly
versus how much we avoid it. How much we own our own power, how often people stand up, and
what we do at Color of Change is we help people stand
up at the right time. When their voices can have
the most influence and serve as a power incentive. Our members at Color of Change are constantly
demonstrating their power. There’s this organization
called ALEC. It’s a right wing shady organization called the American
Legislative Organization. It’s a secret political
organization with corporate controls. A group that introduces
extremely dangerous corporate and anti-progressive legislation
through its members, and state legislatures
around the country. Laws like the discriminatory
immigration law, voter ID laws, stand your ground laws,
all of those come from ALEC. ALEC was so successful that
their state legislatures would introduce bills
in the states and forget to take ALEC’s logo
off the top of the page. We fought, and we won with ALEC. Getting over 100 corporations to
withdraw their membership, and lessening ALEC’s influence,
leaving them with a $1.5 million budget shortfall,
and forcing them to have to end their work on voter ID and
stand your grounds. But we did that by making ALEC
a liability for corporations and changing the incentive
structure. We changed the political
culture in a way. The corporate funders of ALEC,
the Fortune 500s, they weren’t sure who
we even were at first. Some of the people who worked at
corporations, who would end up leaving ALEC, told me afterwards
that our campaign really worked to build trust, but
it also worked to build fear. Our pressure gave sympathizers
on the inside the power to move things. They kept saying how
much more savvy, how much more prepared and
organized our campaign was compared to the ALEC
campaign on the other side. We would get on the phone with
corporations, and go back and forth, and they would say, we give a little
money to the right, and we give a little
money to the left. And we’d say, that’s great, but there’s not really two
sides to black people voting. So, you’re gonna have to think about a different
way to handle this. An organization that was 40
years old, and had been so successful, but that speaks to the power
of organized constituency. The power of everyday people
making their voices heard and collectively holding
those in power. Pushing back at the right time,
in the right way, is the way that we win the David
and Goliath battles of our time, and change the incentive
structures of those in power to force them to have to care about
the people that they should be caring about. In addition to our
official work roles here, all of us here probably think
every day, well, how do I know, how well do I know the inside
of organizations I want to move? Is there an incentive
that I myself have control over manipulating for good, something that would shift
bad practices to good practice. Something even in my own daily
context which I may be missing, an opportunity to gain leverage. I would also love to hear maybe
during the question time, what kind of power do you
think outside groups have which we may not be using yet. Or not using well enough, that
could reorient the incentive structures in healthcare and
create a more equitable system. I was talking to a black medical
student this weekend and she reminded me that while doctors
take the Hippocratic Oath, hospital administrators don’t
drug manufacturers do not. Health insurance
executives do not. All sorts of people who make
decisions about our health, and determine who’s health
is important and who’s health isn’t
don’t take it. The oath might not seem very powerful as
an accountability mechanism. And I’d agree. But not having even this
very simple ritual to infuse this very core value across
the healthcare landscape certainly says something. And it signals the incentive
structure we have today. We can all talk about
fighting for justice, but we must remember that justice
is an outcome, not a strategy. Our strategy has to work
at the level of culture. To do this work means making
black people more powerful. Powerful enough to effectively
tell our own stories. Fight our own fights. And yes,
ultimately tell our own stories. In order to influence the way
people think about us. The level of investment they
feel in their gut for us. And all of us must feel
invested in black people. Invested in women, invested
in immigrants and all others. We know what opens up
when that happens. And how hard it is to get
anything done when it doesn’t. Right now on race, we’re not
even moving, we’re moving backwards, we’re not even
moving forward in that regard. So I applaud you all for
taking racial inequity head on. For understanding the connection
between the systemic disinvestment in black
welfare across the board, and how it feeds on itself. From housing to healthcare, from
policing to employment, from Hurricane Katrina to what I call
Hurricane SCOTUS, the decision by the Supreme Court to block
access to the voting booth. One solution is clearly
greater investment, through shared empathy,
shared leadership, shared resources I believe
in our shared fate. When we talk about race or
don’t. And through all of our actions
and decisions big and small, we’re either forging the sense
of a shared faith and investment or letting our differences, our
different faiths, seem separate. Where this investment by
those in power makes sense. When I say investment I’m
talking about in terms of real material investment
that is outcomes based. Not investment of time in
the conversation of a loan. Not investment in the form
of resources towards actions we don’t know will work. Remember how the right wing used
to hate talking about AIDS? Yep, until they fell in
love with it, because then, by taking up AIDS as their
favorite topic, they realized they could get tons of money for
abstinence-only education. For religious based outreach, money to talk about
anti-choice agenda. They turn cultural
presence of the issue into their cultural power,
into their agenda. Just because we talk about race
does it mean the right people will benefit from
that conversation. It depends on how we
talk about it, and what direction it’s heading in. And that’s why who’s leading
the conversation is critical when black people, when people
of color are not leading. We get this wrong, we get
the wrong kind of attention and misdirected action,
it makes people more vulnerable, not less. The act of disinvestment
in black communities we’ve seen over decades has
made us less safe, not more. We saw it right here in
this City of Baltimore as my organization worked
with organizations around the city to mobilize
their voices in the aftermath of the Freddie Gray tragedy. And so we cannot be fooled by
the attention racism is getting today, and think that we’re
on our way to a new culture. To change the pattern
of disinvestment to real investment,
shared fate and shared humanity. This is the difference
between cultural presence and cultural power. Black people are very
present in the media. Even in positions of authority
the President of the United States and you turn on your TV,
you listen to our music. Race and so called racial issues
are very present in society. You see Jon Stewart and
Bill O’Reilly debating race. It’s on the news,
it’s on cultural reference, hot topics over dinner, but that
presence that our issues have, or that we have as a people, does not translate into
our powers as people. It does not translate into
the leverage we need to tackle structural racism effectively
in all its forms. It does not translate
into the power. We need to make life fairer and
better for black people, or any people of color. It does not translate automatically into the power
to create justice. If a black girl cannot sit in
a classroom, or if a black woman cannot sit in her car without
potential of police violence potentially ending her life,
how could her everyday health possibilities be secure, or
valued, or even a priority. For a black girl, or a woman, can be abused or
killed in those situations. But on top of that malign and
blame for her own harm or death. How? How can we have possibly expect
to create a culture of care with respect to her health or even
truly value her health at all. Since according to these warped
values we’re seeing in our political debates, she doesn’t
even deserve to be healthy. Not only do we all
deserve to be healthy, deep down we all
want to be healthy. And I even think that we all
want everyone else to be healthy as well. Unless we come across
the unchecked value system perpetuated by self interested
parties with a lot of profit to make. Who incentivize many of us to
turn on ourselves to see others as unworthy of care. That is the only reason we
wouldn’t want equitable care. It’s dehumanizing and
we must change this environment. Culturally speaking we are to
used to black pain in this country, too used to grieving
black mothers, too used to failing black people, too used
to unrealized black dreams. We have learned to expect
these things will happen as if it is natural. We may think others sounding
an alarm, one that is motivating for action, but others hear that
same sound as somber church bells, merely resigning them to
a sense of the inevitability. We are not only expecting
the worst for black people, we expect the worst
from black people. And we have to challenge
that in all of us. We do see black people as
the problem in this country, or can we see black
people as the solution? Do we believe, truly, that we are all vulnerable
people that we care about? Be the solution, we can be
the solution rather than merely standing to
symbolize the problem. We can believe in the history
of black people and other people as a history of leadership,
innovation, collaboration, and peace only when black leadership
and power make sense. Only with black leadership
in power activated and strategic will it be able
to change how things work. Our role is to build
the power that can change the incentive structure. And to break the cycle of
reinforcing practices that lead to racial disparities along
all the metrics we care about. Which we see growing
out of control today. But again,
each of us is responsible and capable of disruption. Not just in our policy
recommendations, but in our every day lives. In the support we drum up for
protests and strategic campaigns and at
the tables where we negotiate, all of which we need
more of to win. The demand at the end of the
racial inequity are louder today than they have been
in a long time. The analysis of the life and death consequences of racism in
policing and mass incarceration in health in many domains of
life in the United States today. In 2015 we shouldn’t even
be debating these issues, but we are. That analysis needs to be well
researched, well articulated, highly sharable, and
incredibly persuasive. But it’s not enough, it’s not
enough to know what’s wrong if we are not powerful enough to
put in place what is right. And so our challenge is to
understand at Color of Change, our members needs and passions. Use culture and technology
savvy to create the spark that fires up their
participation. And then for
all of us to aggregate and amplify their voices in
targeted, strategic ways. To create real leverage over
corporations, government, and other decision makers
who impact our lives. To make everyone,
including organizations and leaders within our own movement,
have more human, real, and compassion and understanding
of the black experience, and of the progressive power
of black leadership. So it’s a pleasure to join you
today in your efforts to create new knowledge, and embed that knowledge in an
outcome-based practice at scale. I invite you into our efforts, to take on our work as your own
mission, and ours is yours. To create greater power
among black people and all people of color. So that we can sustain
a system of care in which knowledge matters. Your discoveries reach
all people who need them. And we can create the radical
shift to translate the presence we have in this world, into the power to actually
get something done. Thank you. [APPLAUSE] So
I’d like to take a little bit of time for some questions. We are in a huge moment of
cultural change where media, technology, the economy, are disrupting things in
really interesting ways. And at Color of Change
we are trying to sit at the intersection of that and
give everyday people the power, the ability to be more
powerful to those who have the ability and opportunity
to change how we live. And so I am not an expert on HIV
and AIDS, and so, but I like to see myself as an expert on
organizing and building power. And so
that is the space in which I will be able to
answer questions and sit inside this
conversation with you all. [LAUGH]
>> So my question is this. I’ve worked in similar,
in the past in both criminal justice work and
stuff and also in HIV. And I think one of my
frustrations to be frank, is just not seeing. So even amongst
the kind of more black, progressive national
organizations, there’s a way in which HIV is still completely
silent and off the radar. >> Uh-huh, uh-huh. >> In ways sometimes, even when
it is the most obvious, right? So we’re in a situation where
just here in Baltimore, I don’t know if CDC
will soon release data that the death rates
from HIV are highest in Baltimore than any other
city in the nation right? That’s Atlanta, Baton Rouge and
Miami being closed at times. So my question is, and I’ll ask
sometimes people, sometimes say academics or progressive black
folks or national organizations, if I’m in spaces or
on panels with them. Who’ll come up to me
on the low and say, I’m glad you brought up
HIV because my cousin. Or sometimes they even call me
personally when they have family members in crisis around an HIV
diagnosis or housing, a range of things, but will not make it
a part of their political work. So my question is, at what from
your vantage point would it take to make organizations actually
engage HIV as part of the social justice issue for black people
in the same way that they do criminal justice and other
kinds of like state violence. >> Yeah that’s
a great question and my colleagues might not like my
answer to this, but I actually think that folks have to cause
disruptions at organizations and force people to do it. And this is my whole point
around all of this work is that disruption is important. The reason why I
am here is because I believe that this has to be
part of our long term work. And in order to get there, we have to create disruptions
in government, disruptions in corporate places to force to
change the incentive structures. But just like we have to
change incentive structures, inside of government,
corporations, we have to change incentive structures
inside of our movement. And Color of Change has had a
history of sometimes disrupting inside of more legacy and
traditional civil rights bases and pushing back when we felt
the incentive structure was off. And I don’t think that, folks. Folks may come around eventually
and start doing the right thing, but I do think that
behaviors have to change and I don’t think they change
without disruption. And so, my advice is for folks who believe that we have
to change some of the ways in which our institutions
look at these issues. I think, pushing at these
institutions and changing the incentive structures
are gonna be necessary. And I know my colleagues who
run all our other organizations probably will be really
mad at me for saying that. But I think that even inside
of my own organization, when we’ve moved or
changed on things, sometimes it has been because
something has been disrupted. >> What role do you
think social media and the Internet has played in
both the cultural crises of race lately and
how that can be translated into. >> Yeah,
that’s a great question. So I think that social media
trending these platforms of our time is exactly how we’ve
mistaken presence for power. That we have seen things
being talked about. We see people more aware. We see folks sharing. We see people clicking on things
and we mistake that for sort of changing something systemic or
the presence that actually, or the power that actually
changes anything long term. And so I think social media and
so much of the awareness can sometimes work to the detriment,
particularly of black people. Black people, who are seen so
often as symbols, symbols for what’s wrong with our
education system, symbols for what’s wrong with our culture,
and are used that way
oftentimes by the right. To symbolically make a case for
something larger, a case for disinvestment,
a case for how we change how money
flows in this country. And black people are used that
way and social media platforms can in many ways, they are not
good or bad in of themselves and anyone who says like Twitter
is going to get us free. Remember that Twitter
is a platform that is in Silicon Valley that
refuses to hire black people. Color Of Change has been
campaigning against them for the last year, just forcing
them each time to release their diversity data, and we think
it’s gonna get better, and then it’s still at 1%. And in the 1%,
they count security guards, cafeteria workers, and a bunch
of staff who are fighting for a living wage on their campuses, they include in the numbers to
make us think that it’s like 1% of people who are being paid are
part of the Silicon Valley boom. And it’s not even 1%. Of that, and they say
it’s because of STEM and most of the jobs at Twitter
are marketing and HR and you tell me you can’t find black
folks in Oakland to come and work at Twitter in HR? I say it to say that so much of what’s happening in
social media space can trick us into thinking that we’ve done
something that we haven’t done. And so technology is a tool. I think we have to think
about it that way. In the 60s the Student
Non-Violent Coordinating Committee installed something
called the WATTS line at their
Shore University office. And they installed
the WATTS line, it was a precursor to
the 1-800 number and the WATTS line allowed for folks
to bypass the Ma Bell operators. When you made a long
distance call at the time, you called, they transferred
you to the next person and the next person until they got
you where you needed to go. And the operators were
largely controlled by the White Citizens Council. And so calls that SNCC was
making were getting intercepted, and information was not moving. And so they installed this WATTS
line because it was cheaper and they could move
calls much quicker. Did not change their
theory of change, it did not replace the fact that
they needed to have a healthy, strong, and
robust organizing strategy. They needed to be connected
to the issues and the people. The technology allowed them to
do it quicker and cheaper and it allowed them to
move information. So, in so many ways,
I believe, I look at Twitter, I look at Facebook as
modern day WATTS lines. They allow us to move
information better. But make no mistake, they in of
themselves are not going to get us free and
if we solely rely on them, we are in this situation
of presence, not power. Oh. >> Oh. [INAUDIBLE]
>> I think that, it’s about being really concentrated on
changing incentive structures. Developing campaigns that
actually do that and bring people to the table, creating
problems for the real targets. Whether they be corporations or
those in power. And forcing them to have to make
a different set of decisions. I think about this
just in terms of our criminal justice work right now. And I often times get really
frustrated when people say to the Black Lives Matter
movement, where are your policy demands,
where’s your policies? And I’m like it’s already
illegal to kill black people. I’m like yeah, and do we need
another set of policies that still won’t be enforced? We actually need to change
the incentive structure so this year Color of Change is
launching a campaign to go after district attorneys. And creating a new set of,
because in many ways district attorneys are making these
decisions about what to do and what not to do in
these situations. There are 2400 district
district attorney seats around the country. They come up,
some will coming in 16, 17, 18. We don’t know much about these
races except that about 75% of them are uncontested. That most of the time when
a district attorney seat changes over is because someone retired
or ran for higher office. And so in some ways, if we’re simply trying to put
more policies in place and not concentrating on
the enforcement, it’s like we’re operating on the kidney when
the liver is the problem. And so from my perspective if
we are working to build power to multiply voices in
moments of outrage and translate that to
real things to do, we have to think very
clearly about the folks that we’re holding accountable, how
we’re holding them accountable. So that we’re not just creating
more awareness about our issues, we’re not just sharing and reposting articles in social
media, but we’re creating real consequences for those in
power and moving that energy so that over time,
folks that hold onto levers of power feel like they have to be
accountable to black people. They feel like that something
will be different if they’re not accountable to black people. And I believe that we are in
this moment now where as much as we are inside this moment of
deep presence, we haven’t yet translated to
the power where folks feel like they have to do
something for black people. We’re getting closer,
President Obama doing what really was an executive
order, but an executive rule, around ban the box is
getting us closer right? We’ve seen all these executive
orders for other communities, for the LGBT and
immigrant rights and black people are part of
those communities as well. But him having to
do something for black people as black people. Something that was clearly seen
as a black issue, not an issue for another community,
is moving along the way. And how we are building
that power and forcing a different set of rules is one of the ways I believe
that we translate presence. People knowing about something
versus people feeling like they have to do something as a result
of knowing about it because there will be consequences
if they don’t. >> Are faith communities
playing a positive role, negative role or no role at all
in this in this change, and how could they play
a positive role? >> Faith communities, like so
many communities, play a role, and sometimes it’s positive and
helpful and sometimes it’s not. And I will say that we’re
talking about presence and power, but the word above
each of these is culture. And how we are situated
inside of our culture, in our beliefs,
in our systems is so important to how I think
about presence and power. And faith plays such a critical
role, not just in terms of what we believe but then who we
interact with as a result. How we are socialized and
then how we act on that. Those that hold leadership with
inside of faith traditions have a tremendous role to play. And always had a tremendous
role to play in creating a new future for us. And so there are times when,
it being on the ground in so many of the uprisings that
have happened over the last couple of years,
I have witnessed and experienced the just tremendous
leadership of so many in the faith community who have
been there and have stood up. And then at times I see
a mega church industry that is giving black people in other
communities as well an idea of money and wealth and materialism
that does nothing but incentivize corporations
to gain more and more power over our lives and
our politics. >> Thank you. >> Just as an example as far as
what the faith based community is doing to talk about
presence and power. For instance,
my church that I attend, my pastor is very pro black
in a sense of creating, helping us as people that
attend church to have power. And one way that he’s doing
that is with our buying power, and having us to kind of boycott
things like Black Friday. And instead of spending our
dollars in these big corporation companies like Walmart, we are
to, he has kind of mandated us to now spend our black dollars
on black-owned businesses. So that our black dollars can
circulate within the black community. So that’s an example of how-
>> That’s a great example. >> We put presence into power
with regards to how our dollars are circulating. Within our own community,
the black community. >> Great, that’s great. >> Well we thank everyone for
all your questions and answers. >> [APPLAUSE]
>> And as we are getting ready to move on to our next, thank
you Rashad we appreciate you. We are getting ready
to go into our next, the first time
Red Ribbon presentation. Doc, you ready? So I’d like to introduce Dr.
David Hargrave. He is the co-director of
the Baltimore HIV Collaboratory, and chair, and professor,
Department of Health and Behavior and Society,
so Dr. Hargrave. >> [APPLAUSE]
>> Thank you very much. I’ll only say two things
quickly this morning. The first thing I wanted
to say very briefly was, something that’s weighing
heavy on me today and I just wanted to
share this with you. It’s striking to me today
that about 129 people in Paris have been killed
by homicide and the world has been an outpouring
of support and attention. And recently the Russian
airliner with 224 people were killed by homicide. And if you add those
two numbers together, which the world is
very focused on, that’s 353 people
killed by homicide. But so far this year in
Baltimore we’ve had 304 people killed by homicide and barely
a peep in media and attention. And I just wanted to say that
I hope we all join together today in thinking about how if
we can somehow change the global society. Where 304 homicides
in Baltimore, largely in African American communities
matters as much as 300 homicides across the world, I think on
that day we will have cured HIV. So I wanted to share
that this morning. >> [APPLAUSE]
>> And I also just wanted to take a second to very much thank
Aaron and thank Carlton and thank Mr. Smith. For the tremendous leadership
that they’ve shown in the Community Participatory
Advisory Board, we’re extremely privileged that
the Center for AIDS Research at Hopkins to have their leadership
and all the leadership of everyone who’s joined the CPAB,
or Participatory Advisory Board. And these bridging the gap
conferences wouldn’t be possible without their leadership and without their passion
in this area. And so it was with really great
enthusiasm that we heard that the CPAB was very interested
in presenting these two very important red ribbon
campaigns and I’m delighted to turn the podium
back over to Mr Carlton Smith, to present
the Red Ribbon Campaign. >> Sure. >> [APPLAUSE]
>> Thank you, Don. >> [APPLAUSE]
>> Well, I have very nice, very, very, nice remarks for
this young lady. She’s been a friend for
so long for 20 years. We first met at City Hall
when we were forming the Ron White planning council
and I took hold to her. Because it was like, wow, getting ready to get
into something new. Something that engages, something more than
outside of yourself. You’re helping
a community in such a way. Just as when Ron White
legislation was just coming into Baltimore and
along with herself and so many other are founding members. And now, the planning council
is into its 25th year. So we wanna give her and others
a round of applause for them. >> [APPLAUSE]
>> I also know her for her strength,
I know her being a woman of God. And I like to say that, because that’s very important
doing the work that we’re doing. Because if you don’t
have the God in you, you surely can’t be about
the God about people. And I always wanted to say to
her, I see the God in you and I appreciate you so
much and so many others. She’s also the Executive
Director of Sisters Together and Reaching. Wow, how many years now? 25 years. You all give her a round
of applause, it’s not easy. >> [APPLAUSE]
>> I also wanna thank her for being an ally to
the LGBT community. It was her son who helped
us with marriage equality. It is her who still preach about
equality that God’s love is for everyone. And that takes courage,
even out of your own church. And sometimes you get
a little cross-eyed, but we appreciate that. Sometimes people don’t even say
thank you, we say thank you. So I had an ah-hah moment,
so I was like, woo. If I only knew. >> [LAUGH]
>> So I wanted to share something from
my ancestor, Maya Angelo and it reads like this. I think of a hero as any
person really intent on making a better place for
all people. Ladies and gentlemen, I’d like to introduce
to you the Reverend. Put your hands together. >> [APPLAUSE] >> [LAUGH] That must be Donald Birth. >> That must be
Donald Birth somewhere in. Hi, Donald, we recognize you. [LAUGH]
>> Good afternoon, everyone. So this is the most
challenging session, because it’s right after lunch,
your bellies are full. So if you need to stand up and
stretch and wave a little bit to keep to yourself going,
we totally understand. But didn’t we have a great
morning this morning? >> Yeah
>> Fantastic. So it’s time for
us to transition over to talking about people that are doing
things in Baltimore, people that are on the ground,
people that have a heart for community and seeing
the full community restored. And so as we think about what
we’re gonna be talking about this afternoon, we’re gonna be looking at
a couple of different panels. This first panel is on poverty
and HIV in Baltimore City. Our second panel is
on healthcare access, linkage to care and progress and
our third panel is on community perspectives on HIV healthcare
and healthcare access. And so we invite you to join
us in this discussion and we are so thankful that you have
stayed through the afternoon. I am going to take
just a few minutes and introduce you to some
of my colleagues and friends doing absolutely
fantastic work as we talk about poverty and
HIV here in Baltimore City. I want to remind the panelists
that we need you to speak into the microphones,
as well. And I’m gonna briefly
introduce them, all of them have resumes
that are very, very long. So what I felt like would be a
productive use of our time is if I gave them a very quick
introduction and then I gave them each two minutes to talk
about their own organizations. And then we’re gonna move into
a series of questions and comments as we look at some of
the holistic need that our HIV positive friends have
here in Baltimore. So I’d first like to
introduce Tom Bonderenko, the executive director and
CEO of Movable Feast. Tom has over 30 years experience
in the social service field including a diverse public and
nonprofit experience in developing housing and
supportive service programs for individuals who are homeless and
those with low incomes. Since February, 2008, Tom has served as the executive
director of Movable Feast. He’s also the cofounder
of the greater Baltimore Washington Residents
Services Council and the founder of the Coalition of
Service Providers, a member of the Food is Medicine coalition
and the Maryland Food Access and Nutrition Network and
the Care Coalition. In 2014, Tom was appointed
by the mayor as a member of the Baltimore City Commission
on HIV and AIDS planing group. And so thank you for
joining us, Tom. John Katov on the right. John is the founder of
Open Table after colliding with a homeless man on his church
outreach mission in 2005. John’s efforts to build a board
of directors around his brother and develop a business plan for
the next year of his life resulted in
the founding of an organization called Open Table John serves
as the CEO of that organization. Prior to leaving
the business sector and developing the open table model,
John has worked 20 years in the business management and
marketing experiences and worked with people
from all over the US. He serves as a member of the Bishop’s
Strategic Advisory Committee for the Southwest conference of
the United Methodist Church and lives in Phoenix,
we’re happy to have him here. Hillary Sigismondi is
Program Manager of the Geraldine Young Family
Life Center located in West Baltimore. Throughout her career, she has
written used curriculum for youth developed and
presented teacher, parent and volunteer trainings and
workshops. Organized hundreds of volunteers
at an intensive tutoring program for children experiencing
homelessness living in shelters and hotels. She is also a trained
facilitator of the circle of security parenting model and
has brought that to families of the Geraldine Young
Family Life Center. And last but certainly not
least is Clair Watson, the Director of Programs for
Maryland New Directions. Clair has been working at
Maryland New Directions for over four years and
is responsible for the day to day management
of the organization and oversees all training
activities for their clients. Clair was instrumental in
developing the organization’s first industry specific program which now enrolls
75 people a year. She has presented various topics
on workforce development at conferences throughout
the region. So thank you team for
being here. This is a conference that
looks at HIV and poverty, social determinants of health
and how they interact with HIV. Many times, we think about HIV
as just a medical condition without thinking about the
holistic needs, the spiritual, the social, the physical, the emotional needs of
our brothers and sisters. One reason, these wonderful
members have been selected as a part of this panel is because
they see the whole picture. So my dear panel members,
would you please take a moment to describe your
organization and what you do before we hop into a
series of questions and answers? Tom, would you tell us a little
bit about Movable Feast? >> Hi, everyone. Thank you for
the opportunity to be here. Movable Feast is a 26
year old nonprofit. We serve Baltimore City,
five surrounding counties, and the Eastern shore of Maryland. In 2014, serving nearly
800,000 meals to about 5,400 households
across the state. We are a home delivery food and nutrition program for
most of those individuals. Some though, take part in our
medical transportation program. We run and
operate a medical transport for people with HIV and
AIDS in Baltimore city. We also operate a food
service training program, a work force development
program, where we train people in food services with the
specific focus or interest in medical institutional
preparation of foods and then help them find
employment in the community. Last year, 95% of the clients
we served of the 5,400 households lived on incomes
of less than $11,000. Most of the people we serve
are poor, critically ill and sick people or very,
very low income. >> Thank you, Tom. Hillary, would you tell
us a little bit about the Geraldine Young Center
as it’s a part of AIRS. >> I would love to. I´m Hillary Sigsamondi,
and I work for AIRS, AIRS is our
umbrella organization and stands for Aids Interfaith
Residential Services. AIRS has permanent and transitional housing programs,
for both adults and youth. The Geraldine Young Center is
part of the youth programming, which is under the City Steps. We are located on
1621 Druid Hill Ave, right next door to the Druid
Hill YMCA in West Baltimore. We are a transitional
housing program. Our women can stay with us for
up to two years. We do serve women between
the ages of 18 and 24 who are experiencing
homelessness. What I think is very special
about our program is what we say is we’re not just about
surviving, we’re about thriving. Many of our residents or
applicants that come to us, that’s what their world is
about, and we’ll work with them, whatever it takes to actually
save money, pay rent on time, so that they can have
the experience of thriving. We do have the privilege to be
able to offer them a housing choice voucher, 18 months,
which is pretty amazing, which has them move into
their own permanent housing. I also want to say that we
are trauma informed, and I think that is a lot of
what I’m hearing today. I haven’t heard that but
I think that it so important. We’re recognizing that A, just being homeless is
a trauma in itself, and many of them have experienced
trauma all their lives, and we’re out to recognize that, and
honor that as we work with them. >> Clair,
would you tell us a little bit about
Maryland New Directions? >> Sure, Maryland New Directions
has been around for 42 years. We started in the 70s as New
Directions [INAUDIBLE] serving displaced homemakers, helping
them get back into the workforce or into the workforce for
the first time. In the 80s, we started
working with both men and women and providing primarily
career counseling services, job readiness training,
job placement assistance. Today, we have two
training tracks. One is a two-week job readiness
training program where we’re equipping any Baltimore
city resident, primarily adults 21
to 60 years of age, with the skills they need to
have an effective job search. Everyone is matched with a job
coach that works with them for up to two years or as long as
they stay engaged, it could be longer, to really help them
identify their career path. Sometimes in that
career path journey, people need to be connected with
a survival job, or something in the meantime, while their
making the steps they need, or the preparation they
need to find that job or career path they’re
passionate about. The second training track
is in industry specific. Maritime training program,
specifically training individuals for
the maritime industry. A lot of us are wearing clothing
that’s coming from somewhere else in the world, and so we’re really giving
people the knowledge for a growing industry. Primarily, we’re really helping
people get back to work, and I think one of the things that
separate us from a lot of other workforce organizations is that
we identify that counseling is a really large component. When people lose their job,
they forget who they are, we tie our identities to our
job, and so we incorporate a lot of mental health counseling
into the training that we’re doing to make sure that
individuals are really equipped to get back into the
workforce and to stay employed. >> Thank you, Claire. John, can you tell us a little
bit about Open Table? >> Hi, everybody. My name is John, and I think
that as somebody, a person of faith in a movement that the
first and most important thing for me to tell you is that, I’ll
speak for my own beliefs and I will respect the beliefs
of all others gathered here. I am somebody who
drove by poverty and people in poverty for the first
40 years of my life and I think the story of many people
of Open Table is quite similar. I collided with a homeless
man and I realized that I was in much greater poverty
than he because I was not in a relationship with my brothers
and sisters, and sharing my intellectual and social capital,
my community networks, and I was not allowing them to
share a relationship with me. Open Table has really become
a way to build new communities. We work in faith communities and
we provide a model that faith communities can use to
develop these boards, we call them tables, after the communion
table, where all are welcome. They partner,
a group of six to ten people, with somebody
experiencing poverty. They share a relationship. The person they are serving
is in charge of the table. They make all the decisions
about the table, all the decisions
about their lives. And the people around the table,
through relationship, through mutual relationship
learn that no matter who you were in a relationship with,
they can help heal you. This is a call back to
the core of our communities to be connected to each other and
to share what is most hoarded in our society, which is
intellectual and social capital. How to give to people,
who we are, what we’ve learned, to help them build
[INAUDIBLE] human potential. >> Thank you very much. I’m gonna run this session by
asking a series of questions and then we’ll open it up to
anybody on the floor. If you hear something
that sparks your mind, feel free to write it down
on a piece of paper and then during the question and
answer time, we’ll go ahead and reach out to
everybody for their questions. As you’ve heard, throughout
this morning, the theme of the social determinants that
affect how somebody may or may not live well
with their HIV. One of the things that Tom
is bringing to the table is this concept of food as
medicine and food and how that interacts with poverty. Tom, could you talk to us
a little bit about that? >> This concept of
food as medicine, Movable Feast has promoted this
as part of our philosophy for more than 26 years. A very simple understanding,
in some ways, that despite your illness or
how gravely sick you may be, if you eat well while you’re
sick, you’ll still be healthier during your illness
than you would be otherwise. For years, we have reported
food as medicine and I would say in the last two or
three years, especially with the induction of
the Affordable Health Care Act, this has become
a popular concept now. Even here at Johns Hopkins,
we have a partnership with Bloomberg School
of Public Health, did a white paper study
in the past year. It should be released
at the end of January. Which will have
looked at the lives of close to 60 HIV positive
individuals who are on service compared to the lives of those
who are not being serviced. It’s a study to look at what was
their overall quality of life? What was some of the soft
scale qualities of life, such as did you have more energy
in the morning when you woke up? Were you able to go out for
a walk today? Did you exercise at all? Do you feel like you have
better mental acuity? And other much more
solid outcomes, such as how often did you
access the emergency room, were you hospitalized, and
if so, for how many days? Did you have a better
relationship with your primary care provider because you were
able to make appointments rather than miss appointments
when you are feeling ill? The study looks at that and
I think so far, Hopkins has been so impressed with it that they
assigned a preceptor to this paper as well as a research team
to further analyze the data. We’re hoping in
the spring to have a Food is Medicine conference for
the city here just to share that awareness enlightenment
with the community. But our premise is that if you
eat well, you stay healthy and so making sure that people
have healthy choices in food. Making sure that Food
as Medicine is not only about the physical tangible
food but in our program, our food is always personally
delivered to an individual. Because our philosophy is also
that if we get to your door, we can check on you in a sense, even if it’s just saying
nobody’s touched you in a month. We’ve had a clients
who called and say your driver gave me a hug
today and I’ve been positive for six months and nobody has
touched me in six months. Sometimes Food As Medicine for
us is about doing advocacy and education and outreach,
especially about continued stigma even in the gay community
at times around HIV and the stigmas that happen there. So for us Food As Medicine
takes a very broad approach. There are about 60 other
similar programs to move nationwide that have
come together recently in the past few years to inform
the Food as Medicine Coalition. We’re an active advocacy body
built on the federal and on the states to educate and
make people aware of the importance need and benefits
of seeing food as medicine. Not only for
building a healthier community, for keeping individuals healthy,
but also helping to contain healthcare costs for
those individuals. One last thing I’ll say about
that is that there are three studies already done. One with Harvard University, with Qualitative Community
Services in Boston. One with Olympia University
in New York, we thought we delivered and one with University of
Pennsylvania in Manna. All demonstrating that for
people who are HIV positive, if they keep laundering
their illness, they have fewer hospitalizations,
fewer opportunistic infections, if they are hospitalized they
are hospitalized for fewer days. That they use the emergency room
much less frequently than those who are not malnourished, and that overall their healthcare
costs are reduced by 33%. We’re hopeful, we’re optimistic
that our paper will show and demonstrate the same thing
in the Baltimore area. >> Thank you, Tom. I’m just thinking a little bit
about how this concept of food as medicine can be addressed, if
we have access to food issues. And before we move on,
I think we need to talk about, just can you address those
access to food issues for me, because we know that
many of our brothers and sisters in many sections of
Baltimore have a hard time finding food in the first place,
healthy food. >> Sure, so certainly finding
healthy food, even in a food desert, or in an area where
movable piece is located here in East Baltimore, to get to the
closest grocery store you have to take two buses and the local
corner stores do not have food. So, actually just recently, the
good news is that we met with the Maryland Hunger solution and we had the opportunity to
have what we provide healthy, nutritious food in
grocery stores. Even it means that that grocery
store gets 15 bananas this week, and 20 oranges, and
some leafy greens. We know that if that’s
available, people will use that, but right now, that is still
a serious issue that impacts people eating healthy
in the community. Money to purchase
the right foods, what is the cost of
healthy foods for individuals in the community,
and do folks have access to that
if SNAP benefits are reduced. And people have to make choices
between doing their laundry and buying laundry
detergent this week, or perhaps paying their
electric bills or whatever. Those issues play in. Just the basic of what I
said when I started out, that of our 5,400
clients last year, 95% of them lived on
less than $11,000 a year. What do you do with
$11,000 a year? That’s a challenge in itself. I think other simple challenges
that we deal with, and we see all the time, we’re
a home-delivered meal program. You find out, you get to somebody’s home they
say, my stove doesn’t work. Well look,
our meals are delivered frozen, how are you gonna
cook your food? Or I don’t have a microwave
to cook this in. Or the refrigerator’s been
broken for two years. Things like that that we take
for granted that people have, have access to it, or working,
that really impact that. The other thing I think
that impacts it is in our healthcare system, being sure
that when people are going home, whether it’s after a surgery
in a hospital, being diagnosed with HIV positive, starting
Medicare, that the healthcare professionals are asking,
how will you eat? Where is your food coming from? How will you afford this? What are you eating? I think all those things
impact people who are poor and need access. >> Thank you so much,
Tom, for sharing. I think about your statement
around a stove not working, refrigerator might be
broken, the microwave might be inoperable and Hillary,
you talked about what some of the work that you
do through Geraldine Young. Access to housing, access to
thing like refrigerators, microwaves, all of those
pieces are just so important. Can you talk to us
a little bit about some of the creative things that you
are doing within the housing sector at Geraldine Young
to address some of, maybe these issues that
Tom was talking about. >> The first thing I wanted to
point out that our grocery store is the Dollar General
on Pennsylvania Avenue. And I actually understand
that that’s one of the most lucrative Dollar Generals
in the state. [LAUGH] I don’t know how I
knew that, but I knew that. So that speaks to that then. So as I said earlier, we have
the conversation at our center. It’s not just about surviving,
it’s about thriving. That’s a huge
conversation to have. That’s a whole like,
paradigm shift. Many of our residents
when they come in, they kind of look at me
like I’m a little crazy. Then they’ll say,
no offense Mrs. Hilary, but you really do know
what you’re talking about. They say those things to me, and
I love that they say that to me, and we have that conversation. But we work at being
in partnership. We’re in partnerships
with Hope Springs. We have a Let’s Thrive Financial
Literacy class that we have. It’s not just your same old,
same old. We get them in there,
we have mentors that they work one-on-one with someone who’s
really a stand for them. We also have our circle of
security parity program, which we feel is making
a huge difference in the future of the children. That’s what I’m all about, the
children having whole different lives because their parents
are gonna have whole new futures because they’re gonna begin to
reflect on what their upbringing was like, what kind of
care-giving they received. And that makes
a huge difference. But the biggest piece that I’ve
connected with the food is all about making these choices. We have something we
do at our center where we reward residents who
actually come in and make good choices and
make sacrifices. They’ll come in and say,
instead of buying soda, I bought fruit or
something like that. So we actually give them,
we have, we celebrate it. It’s not just them,
it’s the whole staff, we’re all in this together. It’s not just we’re the staff
and we’re teaching you, we’re all in this
journey to eat better. Live better, save money so
that we can actually not necessarily be robbing
Peter to pay Paul. So the plan is when our
residents leave in 18 months, we can refer them to their
own Section 8 voucher which I think most of you know,
is like gold. Gold. And we want them, we had
a resident who left recently, she was receiving SSI but
she had $3,000 saved, she had paid her
security deposit, and she had a little chunk of
change, in case something came up, right, in case of
a life situation had come up. So, those are just a few of
the things that we’re doing. >> I do want to bring up
the issue of SSI and SSDI and I want to direct this at Clair. Piggybacking once again off
of what Tom said with 95% of the clients living on
less than $11,000 a year, knowing what an issue
it can be for our brothers and sisters to
find employment of some kind. And what happens when
people make just a little bit too much where they would
start losing benefits, but not enough to get by. Claire, can you address how
Maryland New Directions through it’s job training program is
looking at things like that. And then what you’re
seeing in the field of workforce development. >> Sure, so we at Social
Security have a program called Continue to Work and
we are an employment network. So we work with individuals
that have SSI or SSDI and they’re ready to move, as they call it from dependency
to self-sufficiency. And so we provide the same
job readiness training, but with these individuals, we really have to take a look
at the whole picture, and for some of them qualify for
a 9 month trial run period. So some of them do get called
individually, it’s an individual processes, everybody’s
benefits are different. And we find out exactly how
working will impact their benefits, whether that’s
medical benefits. And then you sit down and you
have a conversation with that individual and their job coach
to find out if they’re willing to, if they make over $750
a month, then they’re benefits would be impacted, and
how will that impact your life. And then our responsibility
is ultimately employment. So how can we help them secure
employment, full time employment that, making that decision to
let go of their benefits is easier than difficult, but
it really is a difficult choice. And it’s not for me, it’s for
the individual as long as they have as much
information they can. They have the training
needed to secure employment. And they have the support
system, like our agency, to help them while
transitioning into employment. Then they’re able to make that
decision to really move to full time, move to self sufficiency,
so to speak. And really let go
of the benefits. But It is a really
difficult choice. And I think sometimes we, in
the workforce world, are caught between a rock and a hard place
because we receive funding to provide direct services,
not always supportive services. So sometimes there’s funding to
help the transportation, and sometimes there’s not. Sometimes there’s funding to
help with or to refer for housing, and
sometimes there’s not. And so there really has to be
more done to address some of the social support
services that are really, really needed so that some
other client doesn’t have to make the decision between
coming to training today or because they need that
$4 to get on the bus, or they need to find something
to eat that’s healthy. >> John, as you’re listening to
Claire maybe talk about social support services, and thinking
about that in the context of the community or in the context
of the faith community, can you talk a little bit
about how the community can be effective in addressing and
transforming some of these poverty-related issues
that people face? >> Well, I speak to what
I’ve experienced in the faith community and
what’s missing is we in the faith community
living into our purpose. Public programs have
an expiration date, grants have an expiration date, foundations
have an expiration date. All of the majority of the
services provided to our sisters and brothers in poverty
have an expiration date. There’s a certain time
that they must exit and meet us in the community, but we
are not there to receive them. Coming into the community
requires a connection to intellectual and social capital. How will I navigate it? What relationships do I have? Suppose I fall back,
how will I be resilient? Who will catch me? [COUGH] When people enter into
the community as an isolated individual, they will not stick,
they will not sink roots. Our society has lifted up
a transactional response to poverty. We look like Safeway,
transacting and pushing people down that conveyor belt when we
know what we’re called to in our faith community is what is
preached, what is our purpose, what we were baptized
into is relationship. And we’ve got to stop defining
poverty only in the terms of economics and start looking at it from
a relational point of view. I probably won’t fall into
poverty, even if I lose my job next week, because I have
relationships in my church, with people in my community,
people that I know. I will know how
to tap into that. When I go to my church and
say I’ve lost my position, help me transform, they will
be there as a community. But when somebody in poverty
comes to our church and they ask for transformation,
we give them our old blue jeans. We have created the largest
system in the world for the distribution of used stuff,
of things that create the greatest society of poverty
maintenance that has ever been known to the people who are on
the other side of the wall. We are now in a place of fear in
many faith communities that we are truly called to
walk to the margins. We will UPS to the margins,
but we won’t send ourselves. And we are the missing
God piece in this. >> [APPLAUSE]
>> One thing that each of you has
touched on a tad is the stigma and discrimination that so
many of our brothers and sisters face. Claire, in your work with
Maryland New Directions, with training, with placing
people in positions, or looking for employment, how have
you been able to work with those that you serve to overcome some
of the stigma and discrimination pieces that they may face
walking into an employer? >> I think a large part of
stigma, individual stigma for ourselves is belief
in ourselves, so I am not my situation. This is just a part of my
life journey at the moment. And so a lot of the training, we
help our clients really identify their personal strengths, their
skill set, and rebuilding their confidence so that they remember
they are not their situation. This is just a part of
the journey that they’re going through. And I think that has a lot to
do with really just reinforcing their values, what’s important
to them and letting them know they are on equal playing
fields as the employer. The employer is looking
to hire someone, and they are looking to bring
value to that employer, so really helping them
remember who they are. And that they are not, like I
keep reiterating over and over, they are not their situation. That’s not what they
are attached to. That’s just a part
of the process, a part of the journey that
they’re going through right now. I think that, more than
anything, which is very difficult to measure, but very,
very important to helping ensure that someone really overcomes
their own individual feelings, because the world
will do what it will. They will think what it will,
but really, building the individual
self-esteem, I think is most important. >> Building the individual,
focusing on relationships, some of the words
that we have heard. As Tom and I were preparing for
this, he read a little statement here and said, healthcare
professionals don’t ask, how will you eat
when you get home? How will you take your
medicine when you get home? Those I think speak to the
relational aspects that are so important, so, so important. I wanna open this time up for
questions, as you have heard different
snippets from our panelists. Does anybody have any questions
for them around their work? Yes, go ahead. >> [INAUDIBLE] Year
of transition is for 18, is it for
mothers and babies? >> I’m sorry,
it’s 18 to 24-year-old women, mothers, who are experiencing
homelessness. >> Okay, so
they can have children. >> Absolutely, they have to have
custody of their children to participate in the program
>> Okay. >> And I just wanna add, we have 12 apartments they
can stay in for two years. It’s not enough. I get ten calls a day,
and I have a waiting list. It’s about a year long. >> A waiting list. >> So and I didn’t say this
before, but would it effect them if placed them from
the relationship piece. We made sure from the minute
I get that phone call, we’ll spend an hour
with a woman. If she’s not eligible for
our program, we’ll do everything we can
to find one that she is. But again, there’s not many. So that to me is a really more,
there’s actually from what I’m hearing, a push to eliminate
transitional housing programs. That’s not the way to go, but. >> Hilary, are you hearing
any innovative ideas or breakthrough ideas in
the housing sector? >> Well,
I saw that question, Erin. [LAUGH] I was kind of like,
nope. I know our organization
has Restoration Gardens. I don’t know if you’re familiar
with Restoration Gardens. It’s for
youth experiencing homelessness, a permanent housing program. But I really don’t know. I don’t think there is enough
of the transitional housing programs, especially for
women, young women. They’re there. And the other piece I wanted to
mention is I may have someone call, a youth call me,
who is going house to house. That’s actually a form of
homelessness is category two. I’m category one, so
you need to be in a shelter or on the street. So many times, I actually will coach
someone to go to a shelter. And that’s kinda messed up, that
it’s like you’re actually gonna have more services if you’re
homeless or in a shelter. I do try to work with them. This actually could be a first
step to getting back on track and not, so. >> I think this is good for us
to hear as professionals as we sit in a research institution
where sometimes we forget about the needs and the real life
situations that the people that we work with,
that our friends face. Do we have any other, yes,
go ahead, Anna, and then. >> At this time I’m
aware of a program, and blame it on my age,
I can’t remember the name of it. But it’s a program that
actually offers incentives and trains people to go
into a community and teach people how to
shop intelligently. And I’m wondering has Moveable
Feast considered using that with some of their consumers, because teaching someone to
fish instead of giving them a fish will help them sustain
themselves a lot longer. And this program was excellent
in that it taught them how to read a label,
to distinguish whether it was better to buy a fresh or
frozen or a canned something. And once they were trained, they
gave them $10 to go shopping so that they could learn
to shop better and to eat better in
our food desert. So are you aware
of that program? >> I am aware of that. Actually we did a private
project around that, in Howard County actually,
three years ago. It was as challenged
there as it actually has been here in the city,
for a number of reasons. Everything from transportation, to people So
I’ll tell you what we found. So we take people out
to go grocery shopping. They’re gonna meet us at the
Safeway or wherever we’re going, to that particular grocery store
on that day, and we’re gonna say now, let’s look at the labels
here and understand the labels. The first thing we found
is that people can’t read. So some of the individuals
we’re dealing with, well, first we need to go back and
do some reading skills. So for us, it became a much
more complicated program. So we weren’t able to continue
it after the six months. I don’t know if it still
exists in the city. >> Yeah.
>> Does anybody know that now? >> Yeah, okay.
>> The reason I brought it up, I do know. >> Yeah. >> They did a presentation. >> Yeah.
>> I can’t think of the name of it, at Chase Brexton, and they
offered us the opportunity to have a in-house training without
taking them to the market. >> Yeah.
>> So that we could spend more time
showing them what to look for on the labels and
how to choose appropriate food. >> Yeah.
>> But we could do it at
Chase Brexton and have so many consumers
come in at a time. >> Sure.
>> And have certain people trained to do this. >> So
we do that with our clients, we will do that our clients now,
and we have three registered dietitians on staff who
do take time to do that. We do home visits
with our clients, and that’s part of what we do is
train them how to eat well or to understand what
they’re eating. So for our own clients, we do
that but as a community program we have [INAUDIBLE] to
something like that. >> John, do you want to talk
about how the model that you use is able to address
some of these issues? You, as in volunteers. >> Sure, all the wealth
is on the community. It’s not coming from
anywhere else, and so I’ll give you
a couple of examples. So, one of our tables or
Board of Directors, was serving [COUGH] excuse me, a working,
poor woman with two children. And they met around the table,
and they had their weekly meetings, tables meet for
a year, or every week, but they socialize together and
build a relationship. [COUGH] And it turned out that
the woman said that she was taking her family to
Wendy’s every night. And, of course, the people on
the table were thinking, well, this isn’t healthy, or
this is a bad decision. And so somebody from the table
had coffee with the sister, and they learned that she had
not learned how to cook. Her parents were not at home, she was left alone
as a latchkey kid. It was food desert
where she lived. And so this woman who had coffee
with her offered to take her to the supermarket, and she taught her what she
knew about preparing meals. How to prepare large meals and
freeze them and make them twice a week and
be able to feed your family. So in this process, the lady
that she was serving learned how to do this for her family. Her children were
around the table, her shame turned into pride. But the lady who met with her
and had coffee with her and got into the habit of this, they
prepared meals together, and this relationship continued. And this is the power
of the community, healing both of those people, no
funding needed, no expiration. And in the case of housing,
it’s a housing desert too, I think we all know that. But faith communities know
how to raise capital. We know how to come around
an idea, we can understand how to run a profitable
bake sale or cookie walk. >> [LAUGH]
>> And so many of our congregations in
that first year at the table, they will raise money to
buy down the rent, so a family can live in
a safe neighborhood. They might ask the family
to pay a little bit more, which goes into
a savings account. But the community has the power
to rearrange the economic strata, the social strata. We can rearrange everything
because we’re coming around the shared purpose of one
individual who is gonna change us radically. >> Felice. >> I don’t have a question, but more of a comment regarding
Hilary’s presentation. So you mention that you
all have 12 apartments for the young ladies, and
obviously it’s not enough, you have wait lists and
things like that. And so, as cold as I am in this
room, but when I heard you say only 12 apartments,
and they need warmth. I started thinking about the
really dumb idea that everybody keeps talking about doing
a dirt bike arena for kids that are stealing bikes,
where you’ll have places for the young ladies that
are trying to make it. And we’re just so
screwed up in this city. I mean, all you have in I
just don’t understand, and I know nobody in here could have
an answer, or maybe they do, nobody want to get in trouble,
but anyway. >> [LAUGH]
>> I just, I honestly think it’s
ridiculous, and I don’t live too far from where our work location
is, but it’s just ridiculous. I mean, first we do the race car
thing and tear up the street, and then we can’t even find
an apartment for some kid, and that’s so ridiculous. [CROSSTALK]
>> Everybody’s aware that there is no place in the country
where a person can have a two bedroom apartment and be making
minimum wage at 40 hours. It doesn’t exist. These are the options
of my residence, it’s the way they see it. Section 8 so
they’re on the waiting list, you all know people who might
be on the waiting list, that’s years and years,
you’re on the waiting list. Now our program we are gonna
actually give you a voucher at 18 months, otherwise what
are the other options? My daughter right out of college
can’t afford to live on her own without roommates, many of us. One that I didn’t mention
that I wanted to is, are you familiar with St.
Ambrose housing? They have a wonderful program
called their homesharing program. I mention this to
all my residents, and I haven’t had one yet
be interested. So if you don’t know about it,
it’s a great program. You can get a beautiful
apartment or a home and share a home with somebody for
about 300 to $400, in speaking of unique ideas,
St. Ambrose. >> So Hilary, it’s been over 15
years ago that Carroll County had a program called the Brewery
that was just for women. It was a former brewery, and it was an old warehouse building
that they made into five floors. The fifth floor was to house
the women and their children. On the fourth floor,
if I’m remembering correctly, there was the Department
of Social Services and the Department of Education. On the third floor was job
development, skills development, and on the first floor,
there was a Goodwill shop. I thought it was one of the most
phenomenal programs that our state has ever had, because
women could stay there for upwards, I believe,
of 18 months. In those 18 months, they had to
make certain that within a week of coming to the shelter, that
their children were in nursery or in school in the community,
and that they had to obtain a job in the community
where they got paid. They got to keep 10%
of their income, but the rest of their
income got banked. And they also were taught,
Tom, how to cook, and how to read the labels,
and all those things. And several commissioners ago,
I brought that concept back here to Baltimore to say, we got
enough warehouses vacant in Baltimore City that
we could do the same. Because I believe, and
I’m not sure of the outcome or why they’re not open today,
but I thought that it was a phenomenal concept because
the women not only got in touch with each other and
were able to network, but they got in touch with social
services that were able to help them work out all of their isms
and schisms that they had. They got to work in a job,
and they got to shop for the apartment that they
got assistance to locate. So that when their 18 months was
over, they had an apartment, they had it fully furnished,
and their kids could maintain themselves in a community that
they had become familiar with. And I think that that’s
something that’s worth considering, and I think
that that’s something that the Abell Foundations and
others might be interested in. Because we do really
need some housing, and people should not have to quote, unquote house share with someone
that they’re unfamiliar with. And you got two different
dynamics going on. I know somebody would not
want to live with me. >> [LAUGH]
>> Therefore, you would take me. So Patrick wants
a old black woman. I’ll take a old white man. >> [LAUGH]
>> But the bottom line is that-
>> And a husband be across the street. >> And the husband will
be across the street. >> [LAUGH]
>> [LAUGH] And Tom says, I wanna drink Martinis on
an [INAUDIBLE] budget, so I’m thinking that there’s
somebody out there that will listen to this concept and
help to develop it. >> Thank you. >> Innovative ideas. As we’re all sitting
here listening to this, what we need to be thinking
about is innovative ideas. Because our discussions
together can bring them about. We are here talking about some
of the issues that we all face. And it is time to bring these
bright ideas together and think outside of the box, cuz I think
that’s what it’s gonna take. I wanna, yeah, go ahead. >> I have a question for Claire. >> Mm-hm. >> So I learned from some of my
clients who are dealing with HIV that they can find jobs,
but oftentimes, they’ve lost their jobs
because of substance use or chronic pain or
other health situations. And this can be really
frustrating for them, so I was wondering if you
have any support or services to help people
in these situations? >> Once a client,
always a client. So we work with individuals,
as long as they stay connected to the program, they are able
to work with their job coach. Everyone has a Assigned a job
coach because sometimes life happens. When you have a disability or you have a life
threatening illness, there could be a possibility
that something could happen to prevent you from going to work. So the coaches and the
counselors on staff work with every individual to help
them kind of manage whatever barrier or challenge that
they’re facing at the moment and then get them prepared for
employment. Really connecting with them,
following up every month. We follow up every month, every
three months, and every year up until whenever, just to make
sure that they’re still stable. And if they’re not, that they
could be engaged with us and make sure that there is
a maintained connection to them. Because life happens,
people lose jobs. And so our goal is to get them
employment and help them to maintain employment, but we know
that some people may lose it so they can come back to us for
those services. >> Okay, thank you. Does somebody else wanna
address that piece? >> I’d just like to address
that from the point of view of the faith community, is that even in 100 person
faith community, there is a network to more than 1,000
potential jobs opportunities. People who we work with,
our connections with service providers,
even to my own family. And often we’re able to network
and help create a job or go with the brother or sister that we’re
helping and help the employer to understand that the faith
community is walking with them. And maybe that employer
could co-invest with the faith community. And maybe we can let our
little consumer market and our faith community know
that that employer has made this contribution,
leveraging the intellectual and social capital in the community
to create change. Not hoarding that stuff,
but letting it flow out and using it and leveraging it. And I didn’t get to see
this was up there, but this is what an open
table looks like. You’ll see a brother and
sister at the head of the table. They’re the boss and then
people from the congregation occupy these chairs. They don’t have to
have any expertise in the title of
their department. They just have to have no
call reluctance, to pick up the phone and say, hey we’ve
got a business plan for one of our friends who was
helping on this table. The church is involved,
would you like to co-invest? Would you like to provide legal
services, dental services, medical services? These tables network and achieve thousands of dollars
of contributed service from community members
namely because they ask. >> Yes, in the back? >> Yeah, I just wanted to add to
that last question in regards to that because a lot of times
when it comes to contributions, you do have quite a bit of
preconceived notions in regards to the community in
which we work with. And recently I’ve led
a lot of discussions and talks in getting the new
face of homelessness, particularly as we reflect
around the HIV AIDS epidemic. And because of the economy and the way which our economic
system is, that kinda has, at least within the past
10 to 15 years, we’re now experiencing a lot of
people who have lost incomes, lost their jobs due to
the economy, who are quite well-educated, who had
very successful careers. Who just happened to be HIV
positive, who were well managing their disease and due to the
circumstances of the economy, are now having to
seek social services. And are running into quite
a few barriers based on their knowledge base prior to coming
into the service areas. And they’re now having
to seek these services. So I just kind of wanted to, many of us who are sitting in
here are services providers, to keep that in mind as we
work with these people and how we can effectively work
against some of those barriers. >> Anybody, comments? >> I would just respond to that. And Karen, I know that you’re
not a panel member, but since Hope Springs has
really pioneered this table movement out here and
in Baltimore nationally, with people who are HIV
positive and in poverty, I wonder if you could talk
a little about the flow of intellectual and social
capital into the people that Hope Springs people are serving
just to provide a local example. >> Sure. Two years ago, my husband and
I joined the table, to serve on the table. Our brother had been
trained as a hairdresser, he came out of
the foster care system. He was a twin. He was in the faith community. He came out as a gay man, was booted from his faith
community, his family. The amount of stigma and
isolation that he faced, decided to go back to
California away from Baltimore. Became positive,
came back to Baltimore and was isolated and alone. I met with his case manager
at the Jacques Initiative, the local HIV clinic on
the other side side of town. And I went to them and said,
I’m willing to take a risk, because I’m isolated,
I’m by myself. I have a job, and
I make about $11,000 a year, but it’s just barely enough for
me to live, to get by. And as we began to meet with
our brother, we discovered some fantastic things that were
going on in his life plan. He decided that he wanted
to go back to school and get a degree in Human Services
so he could serve other youth just like him who had gone
through similar experiences. And we know from working with
youth, that many have had similar circumstances
bouncing from house to house, not a great support system,
and the foster care system. So my brother was making
less than 11,000. In order to go to school, and he
was eligible for a Pell Grant. Unfortunately, he had
never paid his taxes, because he really
didn’t need to, right? I mean, make barely
enough to get by, and the Pell Grant system and
the IRS are tied together. Since we’re looking at our
table, we’re saying, well, we have tax guys that we use. Who can we utilize
in our network? And our tax man agreed
to do his taxes, all of his back taxes, for $1. He started meeting
with the finance chair. The finance chair was
just a retired guy, had no expertise in finance. They started budgeting,
looking at some of his payments, to work at paying off his taxes,
right? Each month we all looked at our
social network combined and said you know he’s a hairdresser,
and we increased his clientele. Well, really easy social marketing,
>> [LAUGH] >> Facebook. All right, yours is great. As a matter of fact, some of
you have been commenting, if you’ve known me for a while,
my hair was really short. >> LAUGH]
>> Even was my professor, and my husband who is the one in
the long hair, but fantastic. So we were able to increase
his clientele through that. Now he gets back into school,
right, cuz he gets through
that FAFSA stuff. It just so happens that our
transportation and insurance person just happened to have
a wife who was a math teacher, and my brother was really
struggling to get by with that, as he was back in school for
the first time in a long time. And so they’re starting to meet
about doing math work, right. And as we discovered throughout
the course of this year, it wasn’t about serving,
it was about being in relationship with each other and
in mutuality. I think it’s these type of
innovative models about seeing what our assets are, what our gifts are and
how we can utilize them. As you all sit in here, many of you are professional
people, right? You have a skill set
that maybe some of you are looking to volunteer or
maybe to use. And here we are with a plethora
of fantastic organizations that are working on health care,
job development, food access, housing,
teams with life plans. And as you’re sitting
here saying, well, maybe I’m doing my something. Well, what is your something
outside of the work? Can you use that work life
experience to serve somebody who might be facing these
different challenges? Anyways, all this to say my
brother did get his human services degree and
moved out to California. And the key to all of
this spells relationship. You know, as Thomas said, at the
end of the day when you go home, do you have anything to eat,
right? By being in relationship with
others and looking at what we have to offer, I think there’s
so much more that we could be doing by connecting with great
organizations like this. I don’t know that I really
addressed the question or response, but
it’s a little bit of a story. Any other questions? We’re getting close to our end,
so if each of you take 30 seconds to say your final word
as we move on to our next panel. >> I just wanna share an
experience I had this weekend. We had a resident
who graduated from. We had a graduation. She’s living in her own housing, she doesn’t have
a job right now. She’s very active with
the Freddie Gray situation. She knew Freddie,
she’d taken video. It’s become her passion to be
an advocate in her community. She’s so inspiring. So she came to the office Friday
night, it was six, I was tired, I was ready to go home. She’s like can you
get me some flyers, this newsletter that
I’m sending out? And I’m like, sure, and then
I’ll look at it, in my mind, I’m like, there’s spelling
errors, stuff like that, but I’m like, who cares? She invited me to this forum
on Saturday that she organized with a bunch of people. I didn’t wanna go. I went on Saturday,
it was from 11 to 4. I was never so moved and
inspired in all my life, the people that she
brought together. Gentleman had just gotten out,
he was incarcerated for 42 years, was there speaking. I mean, it was amazing, and
I share that just cuz I want to make sure you’re effluent of
how inspired I am everyday by the work that I do working with
the women that I work with. And I still learned a lesson
this weekend like who am I to think that that wasn’t
gonna be a meaningful day? It was absolutely amazing. So I just wanted to tell
you about that day. >> Could you show this
picture that I have there? That’s me and Ernie, he’s the
first brother that I collided with about ten years ago. This is our first selfie
in a Walmart Supercenter. >> [LAUGH]
>> What we like to do best is go to the Supercenter and
spend about three hours there. And we just walk around and
talk about where our lives are, what’s hurting us,
what’s making us joyful, what we’re each trying
to do in our lives. And we’re in the shoe department
cuz the only place in a Walmart Supercenter that you
can sit down is in the shoe department. >> [LAUGH]
>> So it’s important to look like
you’re trying on a lot of shoes, so you can maintain
your position. But every morning,
Ernie texts me HAGD. Took me a couple of years to
figure out that meant have a good day. And so I text him back HAGD. In the evening, I text him HAGN,
have a good night, and he returns that. But this connection is so
important because we’re saying to each other I exist, I know
you, I’m in relationship with you, and we will never lose
this connection together. We will heal and save and
keep each other moving forward. And this opportunity is
available to all of us. It is our purpose, I believe
it’s why we’re created. Not for
our own human potential, but to ignite the human
potential in another. So if you’re thinking that maybe
you’re missing three hours a month in Walmart Supercenter,
come and talk to me. >> I think for us, people don’t
see jobs as a cause so to speak. It’s something like we
all have to go to work. We’re all raised,
we go to school, you have to go to work someday. We don’t ever think that we need
other people to help us get to work. And I think it’s really,
really important, we never think about it. That’s what makes it so
difficult sometimes to fundraise, because I really
wanna feed someone with HIV, or I wanna help someone find
housing, or I wanna serve homeless people, but I really
wanna help someone get to work? Do I really need to do that? And I think we really
need to think about, yes, we have a responsibility as
part of our relationship to help people, that’s
the whole picture. We don’t have a job,
you don’t have food, you don’t have housing,
you don’t- >> And people wanna work. >> Exactly, people want to work. So I just want to leave you with
a thought that it is something. It is a cause, it is something to really help
your brothers and sisters. It really makes a difference
in the lives of all of us. I mean we all, most of us
work that are here, so really think about how can
you help someone get to work? That’s what I’ll leave you with. >> When I work at Moveable
Feast, I always think that food or nutritional services or
transportation or culinary training is just the excuse we
use to get into people’s lives. Because really, the healing,
the wellness, the health of the individual, I’ve see is
transformed more once we have that embrace with them, not even
from the food or anything else. We have a client who’s been on
service with us for 18 years. Who was just diagnosed with
stage IV esophageal cancer, which is not a good
cancer to have, and she can no longer take
services or anything like that. But she left me
a message this week, and it really brought home to me and reminded me about what is
the core of what we really do. And she said Mr. Bonderenko, I woke up at 4 o’clock this
morning, I couldn’t sleep, and I was so scared cuz I’m
starting my radiation tomorrow. And I just listened to your
voice telling me how much you were concerned about me and if there was anything you could
do for you to let us know. And we have volunteers
from Hope Springs, actually, who go and
bring her to radiation now and brought her to all her
doctor’s appointments. But through her tears, she said,
there’s nothing more important to me right now than
knowing that I’m loved. And on one level, I thought, how
sad that this woman is calling someone in a program
like Moveable Feast, saying thank you for loving me. And on the other part,
I thought how grateful that I was that we can be there for
her in this moment. That’s what it’s about. The food is the excuse to get in
to give that person a hug that day, let them know
that they’re loved. >> We are called to be in
a restorative relationship. And for all the research,
for everything that we do in our daily lives,
it is about restoration and seeing people as
truly who they are. So let me end there. Thank you so much. >> [APPLAUSE]
>> Can we give everyone here a round of applause for giving us the opportunity to
discuss and meet with us today? >> How’s it going? Feeling all right? All right, good. So my name is not Jamal Hailey. That’s the name that’s in here,
pretty sure. My name is Michael Franklin, I’m actually a close
colleague of Jamal’s. He’s my boss at STAR TRACK and
one of my mentors. He is actually spending time
today in his pursuit of getting his PhD in counseling psychology
at Howard which is fantastic. Black man doing the work
to be a PhD person and indeed our research and
access for our community. So we excuse him from not
being here today, and I hope you understand. So we’re gonna be talking
about healthcare access and the in progress. And I’m gonna give you a brief
description about who I am, just really quickly, so you have a sense about
who I am and what I do. And then we’ll have our
panelists all introduce themselves as well and
then get into some discussion. We’re going to follow the same
format as the previous panel. Any questions that you have,
please hold until the end, and we’ll definitely address
those as they come. So my name is Michael Franklin,
and I’m here on behalf
of STAR TRACK. STAR TRACK stands for Special Teens at-Risk Together
Reaching Access, Care, and Knowledge. It’s a very long acronym,
there’s no test for that acronym. So what we do is we do injury
prevention, treatment, support, and advocacy for young populations in Baltimore
between the ages of 12 and 26. Really focusing on four
specific populations. Focusing on young men of color. Focusing on homeless and
transient youth. Focusing on commercial
sex workers. And then also focusing
on LGBTQ communities. And we choose those communities cuz they are
some of the hardest to reach. They’re the hardest to access,
the hardest to gain trust. Some of the most vulnerable and
marginalized, especially when it comes
to structural oppression. And just where you’re looking
at the HIV epidemic and where it’s falling. We really do a pretty good job,
I think, about hiring folks from our communities to
serve our communities, to make sure that we’re doing
the best work we can to get folks access to their health,
and just access to in general. We’ve been around since 1989,
and adjust that. And so today we’re gonna be
talking about really is thinking more about healthcare
access around racism, around racial justice,
around systemic oppression. Cuz really, if we really think
about it, HIV work and health work in general, especially in
the context of Baltimore City, the place where we
are currently doing our work. You can’t really be doing
HIV work unless you’re also doing racial justice work and
social justice work. Those two are intimately linked,
and that’s part of the reason why we’re saying HIV epidemics
are where they are is because of structural oppression and
systemic violence. And so really thinking about how
we can each individual agency to attack that, and get folks
better access to healthcare, because based on structural
pressures and systemic violence. We’ll be addressing that and
then also talking little bit about some valid historical and
current concerns in black and POC communities around medical
mistreatment and medical mistrust and how we can tackle
that in our own practices. So I’d love each panelist to
introduce themselves briefly and just your name, a little
bit of your background, and the current work that
you’re doing in Baltimore. >> Okay, so I’ll start. My name is Jill Crank, and I’m a family nurse practitioner
at Chase Brexton Health Care. I’ve been working there for
about eight years now, and I was asked to come on the panel
to speak about free exposure prophylaxis for HIV prevention. At Chase Brexton,
we’ve been around since 1979, providing care to HIV positive
individuals for a long time. Now also serving, for several
years, HIV negative individuals. And we’ve been doing PrEP for
about two years. And we’re about to explode on
that front with some Some recent grants that have come in and maybe I’ll be able to give
some information on that. But I’ve been pretty central
in creating the program at Chase Braxton and trying to
educate others on how to do so as well. >> Thank you,
good afternoon everybody, my name is Danielle Skye. I’m a registered nurse with
The Star Trek program which is a adolescent program that
Michael [LAUGH] works for. He just talked about the program
and everything that it does. But more specifically, part of why I was hired is
because we are focusing on the health care of transgender
adolescent young adults. And we know that transgender
adolescents are part of the more likely group and are more likely
to experience discrimination and homelessness, joblessness. And also have higher rates
of HIV prevalence within the transgender community, too. So a part of my work is to
help reduce barriers to healthcare access
within that population. >> Hi, I’m Reesha Irvin, and
I’m an Assistant Professor in the Division of
Infectious Diseases. I see patients clinically
at our specialty clinic in the Blalock and there we
treat Hepatitis C patients with strong focus on
co-infected patients. My research interest is really
around looking at kind of barriers for care for
both HIV and hepatitis Cs and building interventions
to address those. I also direct Generation
Tomorrow for seat bar and work with many of you here. And in that program,
we train both students and community members in HIV and
Hep C education testing and counseling. >> Good afternoon my
name is Emeril Fields. I want to apologize in advance,
I have to leave at 2:50, so if I can get everything I have
to say out in 40 minutes or so. But I am an assistant professor
at Johns Hopkins also. I’m in the department
of pediatrics. And I work as an analyst
of medicine provider and HIV provider in the pediatric,
adolescent, and young adult program in
the department of pediatrics in the Arab Lane clinic. So, I see patients who
are HIV infected and affected, from 13
to 25 years of age. We also provide prep services
in our clinic as well so we do some of that. In addition to my clinical
I’m also an HIV researcher. I focus specifically on young
black gay bisexual and other men having sex with men and HIV
prevention in that population. And really, a large part of my
work is really focused on health disparities and the fact
that the disproportionate rate of HIV that’s carried
by these young men really does represent a social
justice issue. If you look at just
a map of Baltimore City, where you see poverty, where
you see other health problems, we see drugs, we see crimes,
we see violence, you see structural inequality,
you also see HIV in those areas. So that really speaks to the, to
the fact that this is not equal opportunity disease,
unfortunately, in our society. >> Thank you, and so
a number of things came up and barriers was one. So I’d love each of you to just
take a moment and talk about some barriers that some folks
have to accessing health care. We’re gonna hear a lot
from Doctor Shaw, and Doctor Gomez earlier talking
about sort of over arching barriers that our
communities might face. We’re gonna just talk more about
specifically what each of your practices and fields, do you
sort of see are the biggest barriers to folks
accessing healthcare? >> So Chase Preston
focuses also on LGBT care. So I think that that alone
is a big barrier for trust and discrimination
among healthcare providers against people in
the LGBT community. So I think that keeps people out
of the healthcare sector for fear of discrimination,
not being able to be open and honest about their
sexual practices. So I think that’s a huge barrier
that ties directly into HIV prevention and infection. So we pride ourselves on
taking very good sexual health histories and promoting sexual
health in a positive manner to make a safe space for people. >> So in speaking about
the transgender population, I just wanna talk and
just focus on that. Because a lot of the talk today
was focusing on men who have sex with men. But I wanna talk more
specifically about the transgender population and
what that looks like for that group of individuals that have
barriers and access of care. So something that I came up with
this is just about the beliefs and attitudes that we have
about transgender and gender nonconforming
individuals, which is the major barrier
in my perspective. Most of society basically only
thinks of things in black and white and
we see things as either male or female, we don’t see. I’m sorry, so we see things as
black and white or male and female and providers or people
who are servicing populations who encounter a transgender
person are faced with internal and external discrimination
of that individual which may happen thereby creating
a barrier in accessing care. So for instance a transgender
person walks in and their telling you that
they identify as female. But then you might make
a mistake and call them male. That may create a barrier right
there because they may not feel safe and confident that you will
provide them adequate care for them. And so we need to look at
beliefs and attitudes. And where we are internally and externally about the barriers
that we present to our transgender clients when they’re
coming to us to access care. >> So I’ll talk about it a
little bit from the perspective of hepatitis C. So what we know from research
studies that many of our HIV infected patients are
co-infected with hepatitis C, and the rates for
research say about 10 to 30%. We had some recent emergency
department data and their HIV screening programs
that suggest maybe about 50% of the patients that we see here
that are HIV positive are also co-infected with Hepatitis C. >> And since we’ve had great
advancement in treatment for HIV, Hepatitis C has become
a major contributor to mortality and morbidity amongst
HIV patients. So when we think about kind of
access to care to hepatitis C kinda treatment,
we’ve had a lot of changes, in this last few years or so. And so one of the barriers
that we’ve encountered on both a patient and provider side is
just the legacy of interferon. There’s a lot of information out
in the community about how awful interferon was and the fact that
it didn’t cure many people. And so patients still had
that perspective, but also many providers. And they don’t
necessarily even refer for people to get
hepatitis C treatment. The other issue we have in
terms of access to care is that some folks do need a referral
from a primary care provider and there’s this whole
issue of substance use. So if people are still actively
using, whether that be injection drug use or alcohol, there are
some providers that won’t refer. And we’ve heard that from
patients who have either called our clinic or patients who have come in saying
they’ve had to change doctors to actually get a referral
to be seen in our clinic. Our clinic has been very
aggressive with working with people around
substance abuse issues. But more so that we know, for instance, that alcohol and
hepatitis C together can contribute to your liver
progressing even more faster, so we feel that those are the
people we should actually be aggressively treating. So our clinic has
taken that stance, to aggressively treat
substance abuse. There’s other issues we’ve had
in terms of workforce shortages for hepatitis C in that there’s
actually not enough providers in Baltimore to treat the burden
of hepatitis C we have. So, we’re working on
kinda issues around that. And then the final thing, I think this is a point that we
need a lot of advocacy around, is about who can get treatment. So the current Medicaid
guidelines are based around staging your Hepatitis C
and covers people, it ranges from f0 to f4 right now covers
people who are f2 and above. So if I have a patient that has
low level disease by staging and they have Medicaid
it’s very hard for me to access treatment for
that patient. There are some patient
assistance programs, but some of those have been
based on staging as well, so it’s still very hard for
us to access treatment. CMS has issued guidelines
telling states that they should not be using this in their
Medicaid guidelines, but those were just issued
the other week so we’ll see how that
changes the landscape. But those are some of the
barriers that exist right now for hepatitis C. >> Dr. Urban, do you mind
talking about interferon a little bit, cuz I just
thought that maybe that went a little over my head
>> Oh, sure, so, interferon is the old way that
we used to treat hepatitis C. And, it was an injection, and
made people really sick, and you had to take it for
a long time. And, so there’s a lot of information out there in
the community about that. And, even a lot of my
patients bring it up. Now some of that is
starting to change. So last year in 2014 we
got all oral regiments, so pills that people can
just take by mouth. Most people have to take
them about three months, some longer and
with very few side effects. But that information
is not necessarily out in the community. So part of us is just kind
of educating people on kind of what their treatment
options are now and that it’s very different
from how it used to be. >> Thank you. >> So I’ll focus a little bit
on youth and young adults, so there’s generally speaking, most of the youth are of
the age of 18 and before they turn 25 are going
to be treated in adult settings. And the research are starting
to show that adolescents and adult settings don’t do very
well in those settings, they tend to require a lot more. Almost a fourth of adults do in
terms of making sure they get to their appointments, making sure they’re able to
save for their medications, making sure that other aspects
of their lives are attended to. So they tend to do poorly
in those settings, even they were doing well
in a pediatric setting, when they get transitioned to
an adult setting they tend to do more poorly in
those settings. So that’s a huge barrier for
youth in the city. We fortunately have
several programs. Our program’s in Star Track
that focuses specifically on youth and young adults and
HIV treatment. In our, point we have
a number of different, we have Ryan White funding,
we have Title X funding, both of which sort of lower
a lot of the financial barriers here that many youth and
adolescents may face as well. But they also have some of the
things I’ve already mentioned. So they have a lot of competing
priorities in their lives. Many of them may have
housing instabilities so they’re worried about where
they’re gonna sleep at night and not necessarily worried
about taking medication. Many of them have children,
and so they have to take care of
those children as well. They don’t have jobs, they may
not have finished high school, so there are a number of things
that are more important to them in the immediate future. And that’s also very
typical of adolescence, and not very long-term in their
thought processes, so they’re very focused on
what’s in front of them, what they have to
handle at the moment. So that can be a huge barrier as
well, but I think a barrier that really is cross-cutting
beyond adolescence. It’s still the significant
stigma when it comes to HIV. So oftentimes I have
patients that either, they don’t want to think about
the fact that they have HIV. They don’t wanna talk about
the fact they have HIV, they don’t want a pill as a reminder
that they have HIV, they don’t want to see the doctor as
a reminder they have HIV. I have a patient that was in our
clinic as an adolescent, just a healthy adolescent and was
screened positive in our clinic, and have been coming to that
clinic her entire life and now it just feels uncomfortable
being in that setting, cuz she’s reminded of her
status when she comes in. So those are fairly
significant barriers. I think that the reason why
people don’t want to think about having HIV is because
HIV is a bad thing and people still think
very badly of it. And they think badly of people
who have HIV, unfortunately, so that’s a big barrier for
youth to overcome. >> That really triggered a lot
for me, so thinking about, you talked about sort of the base
line needs that folks have and just really trying to make sure
that their basic needs are met before you can actually attain
some higher level needs right. It just brings me back to
Maslow’s hierarchy of needs, right, and that making sure that
you actually have food, water, and shelter. So it’s making sure
you have other things, your basic needs met. If you’re not able to have
those basic needs met, then how are you able to actually
think about your health care, how you actually have think
about your HIV status? That’s gonna be something much
more further down the road to be thinking about,
worried about being discriminated against
meanwhile into a facility where you don’t have any really
awesome access to employment. And so those are really key
things to be thinking about, and thinking about holistic services
around HIV prevention and healthcare, and making sure
that folks get access to what we want them to be,
which is healthy and well, but can’t be there if they’re
facing these alone, right? And a lot of those basic needs
not being met is actually intricately tied to things
like structural racism and systemic violence. So black folks have been
systemically mistreated by the government in
a number of ways. Looking at sort of redlining
in housing, which Dr. Gomez talked about earlier. Looking at actual sentient
neighborhoods, where white folks were given the money to move
into wealthier neighborhoods and get access to loans and then other neighborhoods were
left to be impoverished. Drugs, and then crack and
cocaine epidemic, and specifically looking at
sorta sentencing around criminal justice and the difference
between those two. The higher sentencing for black
folks when it comes to crack use versus white folks and
cocaine use. Looking at education systems,
looking at our medical systems. It’s all sort of really
intricately linked. And so as we consider
the socio-political climate in the US around race, do we think
that health care providers in Baltimore are actually able
to address medical mistrust as it relates to health care for
people of color? And that’s a question for
the panel. >> Okay, I’ll talk about it. So I had these questions
the other day so I had a moment to think
about these questions and then answer them accordingly, so
that I wouldn’t be sitting here stumbling over the questions
because I wanted to sound smart. So first of all,
I feel that we need more advanced level practitioners
who will provide high-quality cost-effective
care in our communities. So I kind of have these
biases against managed-care organizations that pop up
in our communities and I’m not going to name names, but
I’m all about even if we still have to provide
care on a budget. Let’s do it in such a way
that it provides high-quality outcomes because these are still
people’s lives that we’re dealing with, and as healthcare
providers we ought to be seeking the best quality outcomes
from our clients. If not, then we’re doing
them a disservice and we’re further doing
the community a disservice. Also we need to remove barriers
so that there are more providers of color and
also provide and apply cultural competence to all providers
who services people of color, to ensure that we are meeting
the needs that are respective to the culture in which
the providers are practicing in. So if you are a provider and you’re coming in from Ohio
because there’s a big push to bring primary care
providers into the inner cities. Well then you need to take a
moment and figure out where you are culturally about people
who live in the inner city and how we talk about each other and
even how people in the inner city view health and
how health is important to them. And so these things are all
important as we talk about this question
that you just provoked. >> Great, I completely
agree with Danielle. I also, in terms of pre-exposure
prophylaxis, one of the main things is actually finding
the people who are at-risk, finding the high-risk
negatives in the community and educating them on what PrEP is
and how we can provide it, and I think that the link to that
is our community navigators. And so the new, there are these
grants that have been funneled down through the CDC to
Baltimore Health Department and then to 13 partners of the city. And we are going to have 26 PrEP
navigators that can be pushed out to the communities and
the cities, and find people and educate them and bring them back
into the clinics to access PrEP. And so I think that there
is a lot of room for improvement, Danielle’s
completely correct. So one way to hopefully fix that
is to really put the trust and responsibility in our navigators
to bridge that gap between finding the people at risk and
then us as providers. >> I want to echo Danielle’s
comments about health care competency. I think that it’s
super important, not only in terms of racial and
ethnic, cultural differences, but also things with
LGBT populations. Medical writers are not trained
in cultural competency period, specifically not for
LGBT populations. And that’s actually why we want
to put the medical students on that, because that’s really
what they’re asking for. I think now compared to
an earlier decade or so ago, healthcare providers are really
interested in being able to take care of patients from
different perspectives but they don’t have
the training to do so. So I think that’s
an interesting area, but getting back to more
sort of your question. I think Hopkins has a complex
relationship with the community that’s changed over time and
hopefully is improving, but there certainly is still a lot
of medical mistrusts from many patients that we take
care of, and I’m certainly encountering it in the patients
that I take care of. And I think looking like
my patients has helped but also having a relationship
with the patients and not simply seeing them as
the next folder in the door. And the fact that if they
are able to see that and feel that and see that you
actually care about them as a people, then
the institutional stuff that’s happened in the past
is no longer relevant. What’s really relevant is your
relationship with your doctor and the doctor’s relationship
with the patient. >> So I just agree. I think the issue of medical
mistrust is huge and, as Errol said, I think we have
to acknowledge the relationship that our institution has had
with the community before and all kind of strive
to make that better. I think in our specialty
clinic we’ve kind of worked around that area in terms
of cultural competence, but also trying to make sure that
we’re very transparent with patients about their
treatment plan. Making sure people want access
to the medical record that they can get that, so they can
see what we’re writing about patients in their
medical record. We also have a great RN
who was just hired to really work with patients
on treatment adherence and kind of walk them though
that whole process. And I think what people really
want to know is that we care and that we’re being very
transparent about everything. In terms of Generation Tomorrow,
which I direct, I think for our students we have lectures
on cultural competency and how you engage in the community. But I think the biggest thing
that they get is actually working with organizations
like Star, and working alongside them and
kind of learning from them kind of first hand about
the community. So I think that’s really
important as we think about our kind of training for both doctors and kind of public
health professionals kind of moving forward. >> Yeah, makes that training
really happens across the board, right? So, doctors looking at nurses
looking at front deks folks looking at editorial staff
looking at just everyone in the healthcare setting, right? Cuz that one moment,
that one piece of prejudice and discrimination can actually
make that person walk out of that door and never come. And that’s just
a really huge reality. I see that hand and I’m totally,
you’re going to be the first person I grab during
the questions. And also, thinking about some
of the internal organizing inefficacy we can deal with in
our own institutions, right, so like making sure that we have
the community navigators, making sure that we have
the culture competency, but also making sure that
there’s hopefully access to employment opportunities,
not only that are entry level, but higher level for the folks
that we’re serving every singe day to make sure that folks have
access to the incomes to be able to be building [COUGH] and
living healthy, secure lives. So, as we’re talking access and
healthcare access, healthcare expansion happened,
right, the Affordable Care Act. How has that improved or not changed or
what does that look like for you as far as your service
you provide to your clients? Looking at healthcare
expansion and how it’s impacted your practice. Any thoughts and
questions on that? >> Do you want to go
before you leave? >> [LAUGH]
>> So I think that we’ve certainly seen, we’ve seen
an improvement in patients’ access to healthcare insurance
since ACS implemented. We again, have the benefit of
having Ryan White funding. So, if patients are uninsured or don’t have access
to their insurance, something I’m gonna talk about
in a second, then we’re able to provide them with care
through our Ryan White funding. The problem that I’ve seen, one, is that many of the patients who
are on Medicaid have to, for some reason, and
I’m unclear on the timing. But it seems like every few
months they get kicked off their insurance and have to start
the whole process over again. And so, that’s been a huge
barrier in terms of, even though, we have funding to
pay for labs and visits and even medicine, sometimes that’s still
is a barrier if patients think they’re uninsured they may
not come in to be seen. We also have again, kind of
getting back to the stigma, patients who can stay on their
parents’ insurance until they’re 26, but they don’t want to use
their parents’ insurance because they haven’t disclosed their HIV
status to their parents, and they’re worried about bills
going home to their parents or HIV viral load or what have you. So, that’s been a huge
barrier that we haven’t quite figured out how to get
around yet at this point. Some patients have sort of left
their parents insurance and gone on Medicaid, but
that’s not ideal for a number of reasons,
some of which I just mentioned. So that’s sort of the conundrum
that we’re in in our study. >> So, in Hep C, it’s been huge
for us because we don’t have a medical safety net
kind of built-in. So, health care expansion has
really provided a lot of people with kind of access
to our treatment. Again, our major issue is just
in terms of being able to actually provide treatment once
people are there in terms of what’s covered in terms
of their medication, for Medicaid right now. And even some of the private
insurance companies have limited who can have access
to treatment as well. >> So, at Star Trek A&B Treasure
To Help program, we are seeing more adults being able to
provide wraparound services, which is essentially how I
was hired as a nurse care coordinator for someone to
specifically focus on a patient population which is the care
of transgender individuals. And we know that this group
of individuals is more likely to experience homelessness,
joblessness, harassment. They’re the group of more
likely, they experience it all. And so we are able, through Ryan
White funding, which is through a dual diagnosis program because
people who are transgender, have a diagnosis of
Gender Identity Disorder and, or dysphoria, along
with their HIV ems. That’s how we’re able to
get SS Healthcare Dialers, to be able to provide
wrap around service, which will ultimately enable
them to be engaged in care and to ultimately be better
managers of their care. >> So, Chase Preston has always
had a sliding scale fee program where you don’t have to have
health insurance to come to us. That being said, when you’re
uninsured as a provider there’s little that I can do when I
don’t have the support to provide certain medicines or
refer you to a specialist. So, it was very exciting
when about, I think, 35% of our uninsured went down to 15 or
18%, so that’s really great. In terms of prep, Medicaid,
we had no one be declined approval of Travota to use for
prep, so in terms of Medicaid. So, that’s been fantastic and
has really helped out a lot. But there are three
other programs that are available to cover the cost
of the medication, Travota for prophylaxis. I think,
I wrote down the same thing. It’s great when you
have insurance. It goes off and on. I don’t know why, and
my patients miss visits or come to the door and they don’t stay cuz they
can’t pay if they get a bill. But also just the simple,
actually, signing up for the insurance is not very easy. And I’ve had a lot of people
with low health literacy. They have no computers,
they don’t have a phone. And they’re on hold forever. And they talk to someone,
and they tell them to, hey, go download something. And they don’t even know
what download means. I mean,
there’s the whole gamut of it. So, I think it’s fantastic, but
really the sort of nitty gritty of rolling out the access
to the insurance is still a very real thing that my
patients face every day. Luckily, we have a fantastic
strong case management department with lots of
navigators that are excellent, and you can walk in at any
time and talk to one of them. They can sit there and
walk you through it. >> We’re currently in open
enrollment for the ACA now. So, you should access one of
these folks up front to make sure that your folks are getting
access to health care. So, the topic of this
symposium right, is called Exploring the Roots
of HIV Disparity, Poverty, Race, and
Healthcare Access in Baltimore. And so, that title alone
acknowledges intersectionality and that we’re more than
just a race, a gender, a sexuality, or all these
things all at the same time. We’ll always be thinking
about all of the people, who we are,
who we bring into the room. So, what do we need to know
about the intersections of the clients that we serve? Especially among poverty and race to improve
health care access. >> Okay. >> [LAUGH]
>> Yeah, so, it’s interesting. Lisa Bowlig who’s a researcher
out of Philly wrote a paper based on the quality of patients
and the title of it was, once you’ve, I’m going to get it wrong, but
it’s once you’ve made the cake, you’re unable to individualize
the ingredients of how it was. So, basically, they wrote the
ideas that people have multiple components of themselves. And it’s not an additive thing,
it’s really complex. So, for instance a patient, a young black gay male
who’s under the age of 25, who comes into a clinic has
on each individual level, so you mentioned the barriers that
you’ve had to health care. I’ve mentioned in terms of their
gender, males are much less likely to seek out health
care than females are. African Americans have a sorted,
complicated history with health care, we’ve had recently,
within the past decade, the IOM Report is still the best
report, has said that they’re still getting unequal treatment
in healthcare settings. And then, you put work
poverty into that and that’s a huge barrier to
take care of as well. So, an individual who has all of
those characteristics is gonna have much more barriers than
anyone who has those individual characteristics, in terms of
their ability to access care. So, really that intersection of
those multiple oppressed [COUGH] identities really complicate the
picture and it’s something that you have to be cognizant of in
taking care of those patients and really understand how those
different barriers exist and how they interact in their
authentistic terms of limiting access. >> So, I think for
this question, we have to look to
public health, and also really look to
the history of this country. It always amazes me,
the whole dialog about the masses kind of pulling
themselves up by the bootstraps. When we’re really
one generation, post de jour legal segregation
in discrimination in this country, so my parents were
raised under Jim Crow. And so, it always amazes me that
we kind of forget the history of our country. After that, then we essentially
had de facto segregation, which kind of permeated every
part of American society, educational school systems,
whether or not you got loans, where you could live, so
there’s this kind of legacy and history in our country. And then, you lay on top
of that what we had, the decline of industry which
used to offer jobs to people who didn’t have as much education,
but a good paying job. You’ve had the drug
epidemic hit. You have poor educational
school systems. So, the whole notion of pulling
yourself up by the bootstraps if you don’t even have
the educational foundation is just a little
bit preposterous. And so, when we kind of
take a step back and think about how we can
improve healthcare, all of these factors kind of are
directly related to healthcare. As Doctor Phil said, when we look at the map of
kind of where poverty is, those are the same places
you see HIV and hepatitis C. And all of that impacts kind of
healthcare and so, I think this day has really been about
looking in different areas. And it’s going to take really
a multi-component approach. It’s gonna take clinical
providers to do their part, but it’s gonna take public health
and community agencies, and really all of us to
work together and think about some of
these other areas. In terms of housing, in terms
of transportation as well, to really kind of
attack this issue. >> My answer is a little
short and sweet, Basically I feel that,
we need to know that race and poverty go hand and hand,
is what we need to know. And, with regards to who is more
likely to experience it, and that health is not merely
the absence of disease. And that it includes a person’s
mental environmental, spiritual, social, and
emotional standpoints. So when we are caring for
people, we need to be more applying of a holistic approach
to the needs of people. Because people are showing
up with various parts of themselves that are
broken, that need to be fixed. And that health is not nearly
the essence of them having high blood pressure, or simply them having a chronic
condition such as HIV. It could be the fact that
they have homelessness, or that they have joblessness. And so we need to show up as
providers with a holistic mind frame, to be able to provide
care for these people, so that we can make sure that
we´re meeting their needs. >> Wow, [LAUGH] you guys,
I feel everything you just said. I think that the only
thing that I can add is that there’s young
African American MSM. There’s stigma in their
community, not wanting to tell family or friends, or
their church members that they are gay, or questioning, or
questioning their gender. And I hope that we can
reach out and improve that, and somehow help these young
men to feel empowered. Or to find someone to trust and to feel that their sexual health
is actually also part of health. And that there are things they
can do to protect themselves. And it doesn’t become
just an act they do, when they’re frustrated or they,
you know, or are leading home. And so I just, I really, in
terms of prep, I just hope that in addition to granting HIV,
we can just empower people who are vulnerable to
be responsible for his actual health, and also know
that we’re not judging you. [LAUGH] For having sex. We want to tell you how
to protect yourself. Awesome. I just want to add to that
really quickly as far as intertionality is concerned. Just acknowledging
the strengths and assets that our
communities have, right? We’ve been talking about
deficits for quite a minute now, but just acknowledging
the power to exist is huge, and the bravery to exist. The fact that we’re not only
talking about focusing on race, gender, sexuality. We’re talking about mothers,
we’re talking about sons, we’re talking about folks
who may love sports, we’re talking about all these
multi-dynamic people, right. Just really acknowledging
that resilience and strength, that people bring to
the table as well. So with that, we want to open
up maybe to some questions, and then we’ll get some final
statements after our questions from the group. So any questions
from the audience about what they’ve shared so
far? Yeah. >> Okay. Thank you Ray. So, I’m Danielle Doreen. Many of you know that
I run a HIV behavioral surveillance study in Baltimore. And what I, sort of, think of it as is a way to
collect information that is hopefully helpful to people who
are looking for information to advocate [COUGH] and the
>> You want to speak up just a little bit. >> What’s that?
>> Speaking up just a little bit. >> Oh, sorry, yeah. So, essentially in the spirit of
attempting to continue to ensure that we’re collecting
information that is useful and relevant for people who
are doing work related to HIV. That what a couple of you
mentioned about insurance and the sort of bouncing in and out
was really strengthening to me. As currently, I know that we
justice, actually ask people if they have insurance, and
what type of insurance, and then we’re able to report
public/private and we’re able to look
at that over time. It sounds like that’s not
quite precise enough, and that maybe we should
be thinking about something about the longevity or
that bouncing. Is that something you
would recommend, or are there things that would
be more helpful to have information around in
regards to people’s insurance coverage that
would be worthwhile? >> Yeah, I just want to point
out that with insurance, it just depends on if you’re working,
then you have private insurance. And most of the folks that we’re
servicing are unemployed and so they’re going to fall in
the Mecaid category, right? And so a part of my job,
with regards to the transgender community, is to remove
barriers, and help to find those organizations who are out
doing the work, enrolling folks in healthcare, insurance,
and in medical insurance. Because you need it in order to
even see a provider, or see even Excel services at the University
of Maryland School of Medicine. So, I would say that it’s
a two-fold situation, but more importantly, it’s just finding the organizations who
are already doing the work. With regards to pointing people
in the right direction, so that they won’t have any
barriers when it does come time for
them to have to get insurance. Whether if it’s
through Obamacare or through private insurance. Yes. Sorry. >> Response to the question. >> I was just gonna
say Danielle, one thing that might be
interesting just in terms of how stable their insurance
situation was over the year. Because I know we run
into the same situation, like a lot of times we’re
prescribing the three month course of treatment, but somebody’s insurance Medicaid
is gonna lapse during it. And making sure that they’re
not going to have a gap, and we’re going to run out
of medication, and not be able to get them approval
for a whole treatment course. And we do have a case manager
that works with folks on that, but I’ve kind of run
into the same thing. That it does seem that several
people have to kind of renew, or submit additional
paperwork or kind of things. And so it depends on if, also
how you’re accessing it too. If you’re accessing it
through the Department of Social Services, I think that
those are the cases where, if that case is being handled
by a case manager, for instance, through the Department
of Social Services. And for instance, the individual
has not gone back to the Department of
Social Services and turned in work forms,
or bank statements, or whatever it is that they
are requiring to reinstate them in the health insurance, that
that could be a barrier too. So it just depends on, in what
capacity the individual is accessing systems to
gain health insurance, either if it’s through
the marketplace, which is the Maryland
Healthcare Access, or through the Department
of Social Services. And typically, the Department of
Social Services has a little bit more constraints on how
they re-enroll people and how they check in. It could be once every six
months, once every three months. And so that’s just
something to figure out. You had a question to that? >> So I know that there’s been
a lot of turbulence as far as emphasis has gone
on with Obamacare. And basically,
I think my understanding is, they’re telling people not to go
to social services anymore for insurance. >> No.
>> They’re telling them to do it on the Marketplace,
like you said, is a challenge, if they don’t have a computer. And quite often
a person may tell you, I have medical assistance, not
knowing that it’s been turned off until they go to get
their prescriptions. Also my understanding is there
was some kind of big drop, because we had quite a few people that
had lost their insurance. Like we said, for
no apparent reason. Or people that have applied for insurance through
the marketplace, and for three months were not insured,
until we called and called and got a supervisor that found
some glitch in the system. So there’s a lot there. >> Okay, I appreciate that. >> There’s a major need for health literacy
with the insurance. You can’t just sign
people up for insurance. They need to actually know how
to use the card once they get the card, and they have
to understand that their re-determination dates
set in place for the time period from whence you
got your insurance, until you allow me to re-determine if
your’e eligible to maintain it. And you can’t wait until
the last minute, otherwise you guys experience writing
a three month prescription, and their insurance
terminates within a month of your prescription
being written. And so, all of our agencies
need to make certain that we have someone in place
that can actually begin to instruct them and teach them. And if your agency can’t afford
to have someone in place, the Maryland Womens’ Coalition
for Healthcare Reform, you can go online. It is a free organization
to sign onto. There is literacy there for
you to watch the webinars and to actually begin to really
understand your insurance and where to file a complaint. There is a consumer
complaint board in place for our consumers, and they need to
actually be on that board so that they can be a part of it. And especially, there’s great
advocacy for the HIV Community. >> So I wanna repeat, at the
Maryland Women’s Coalition for Health Care Reform. >> Yes.
>> Okay. Thank you. Great, other questions? Yeah? >> Thanks for a good panel discussion there. My question comes [COUGH] to
when it comes to high risk negatives. So if we have a lot of
resources from hospices. But when it comes to
high risk negatives, we find that there are no So
can you talk about, can you discuss about the access
to them cuz sometimes a person has to be positive to access
housing, to access insurance or different things that
they get going through. But how can provide resources so
people who are negative, stay negative and still access
things like case management, they have access to whatever
needs that they have in life? >> So that’s exactly what
this big grant is gonna do in Baltimore city and
it speaks exactly to that. And the PrEP navigators
are going to function to connect them with resources, and
they’re well-trained. If you’re a social worker in
a HIV department, you know how to resource, get everything
resourced in the community. So housing,
transportation, food. So I think they’re going to
benefit when we find them and bring them into our safety net. They’re going to benefit
from all the already established lifelines
that we have. And then, really,
the number one thing is sexual health counseling, like I said,
health education, building up their self esteem that they can
make choices about how they have sex and who they have sex with
and how to protect themselves. And then if they’re eligible for PrEP, then starting PrEP and
keeping them engaged and they’re gonna need every three
month appointments and so, we’re going to be in
constant contact with them. At Chase Brexton,
we have different grants and funds that can give you bus
tokens for transportation. We have funds that can be for medication if you
can’t afford it. We have sexual health clinic for
community members that does cost something, but
the health department, has free STD testing, and
that’s a great service as well. So I think that’s what
I would say to that. A lot of work to do. >> Can I just say a couple
questions to that? So I’m with [INAUDIBLE] and I thank you all other
things that we have. This concern of folks who
are not accessing care, like who are not health seeking. So how do we reach out to kids
who are not thinking that, I don’t need to be
seeing a doctor? So how are we gonna reach the
people who are most vulnerable, and not for the right and
disregard they really exists? >> So we’re trying to expand
our marketing campaign and we’re actually looking at apps,
dating apps and on websites. We’re gonna go into clubs
in DC and Baltimore. We’re going to partner with
other community members, Aids Action Baltimore, and tag
to just non-healthcare related venues, to go out and see the
people that we’re speaking of. We’re going to have a mobile
HIV testing van soon, and we’re gonna,
maybe 8 months away, but we’re gonna literally go out
into the community to find them. Cuz that is the number one
problem, is you’re right, they’re not gonna come to us. They don’t even,
you’re completely correct. So it’s a big challenge. But I do think that the grant
dollars are gonna support this effort. >> Usually, to add to that,
in the youth and young adult population,
it’s a word of mouth. >> Yeah.
>> So it’s very much of a buddy system. And so at the STAR TRACK health
program, it’s an adolescent clinic, essentially is where
it’s housed out of, and so it’s already a free clinic
with Title Ten funding. And so we’re already doing
free STD screenings, free HIV screenings,
we do family planning, we have tons of condoms, we
have tons of health literature. We’re very youth and young adult
friendly, especially with our approach to the way that we
provide care to this population. So I wanna say it’s usually
an Each One Teach One situation, when it comes to youth and
young adults. And when they find out
that there is this cool, hip place that they can go and
get care that is non-biased and non-judgemental, then they’ll
tell their homeboys or they’ll tell their homegirls and they’ll be all coming to
access those services. >> One more thing. I do believe there’s a study
coming up, or it’s already going underway, where the word of
mouth is actually sort of is being studied and
there’s going to be like a, what’s the technical word for
that, the snowball? >> Snowball. >> Yeah, so
the snowballing effect. And so we’re looking at exactly
that because she’s correct, that’s how it happens. >> I would say, so my work is
a little bit different, but I focus on one part testing and
linkage, and so on that side, we’re trying to focus on kind
of non-traditional settings. But one place where
a lot of people, even if they aren’t
engaged in medical care, continuous medical care,
that are seen in the emergency department at some point for
something. And so our emergency
department’s actively been screening for both HIV and
hepatitis C, and we’re working on kind of
linkage secure mechanism there. On the clinical side, in terms of treating hep C, now
that we have potential for cure, there’s also this risk of
reinfection risk with people who have ongoing kind of risk
factors that may be high risk. And so I think in that aspect,
then we’ve got to work to build ways to keep people kind
of engaged, even post-cure. If they don’t necessarily
need clinical follow-up, but how do we follow up with them
in other ways to make sure that they don’t have this
ongoing reinfection risk? >> All right,
let’s get in one more question. >> Yeah.
>> I wanted to ask, as far as like HBCU campuses
with the youth, is that going to be weaved in as well
as far as PrEP is concerned? What do they have on campus and how we’re involved in
the process of PrEP? >> So I know that STAR TRACK
has a huge HBC presence. And I’m not here today to
speak on our PrEP roll-out, but Michael can chat about that. >> Yeah, okay.
>> [LAUGH] >> Yeah, so STAR TRACK has had some presence
on Coppin and Morgan’s campus with the Rise
program that we’ve been doing. So they’ve been writing
inter scripts for our Every Day program which
is about sort of racism, homophobia, and trans-phobia and how that can create uncertain
risk for young black MSM. And so actually one of
our colleagues, Cody, is in the back too, he’s gonna
be on your next panel, he’s actually doing some work closely
with Morgan State around issues. And so he’ll be really intrical
to that on Morgan State’s Campus and some folks doing
the same with that. >> Is it Bowie? >> Bowie?
So they’re out, they’re not in our space,
so actually, no. But Bowie is a place we need
to be doing more, 100%. You’re absolutely right, yeah. Yep. All right, last, last one
cuz I saw your hand before. Yeah? >> Can you talk a little bit
about what it means to be PrEP eligible in the context
of refraining risk and what it means to be at risk for
HIV? How all folks can have access to PrEP regardless of risk? >> I know by even just saying,
high risk negative, that there’s sort of judgment
implied in that term, but it’s just sort of the words that
are used in the research world. So meaning,
who says someone’s high risk? It’s a very personal
term to use for yourself. So we, by no means, do not give PrEP to people
who come and ask for it. So anyone who comes in, whether
you’re a serious courting couple, your partner’s positive,
you’re negative, a negative woman who wants to get pregnant
and their partner’s positive, heterosexual woman who just
had multiple partners. We are very much aware of the
need to expand to anyone who is having condomless sex, not
using needles for IV drug use, that’s pretty much it. But what you’re finding from
the CDC and the top down is of course gonna be targeting
the most vulnerable populations. And so that’s why
there’s the guidelines from the CDC have focused on
the IDU and MSM transwomen. It was a good question but I do
think when you’re in the PrEP community, you do realize that
it’s really up to the patient to define what their high-risk is. >> There’s no eligibility
elements that we need to be concerned with? >> No, if you’re safe enough
to take the medication. >> [COUGH]
>> You can come for the appointments. And you eventually do
take the medication, you don’t not take it, then
it’s a risk benefit discussion. I just had a heterosexual
woman who actually has one male partner, but
she’s suspicious of something. And that’s all I need to know. >> And
correct me if I am wrong, but there is like a checklist also
that providers use to see if you’re someone who is qualified
to be on PrEP or not, and that’s someone who has multiple STDs or
multiple sex partners, so. You don’t have to be in the LGBT
community to access PrEP. You can be from the heterosexual
community to access PrEP as well. So say for instance, if you did sex work
and you are heterosexual, you’ll be someone who’ll be perfectly
eligible to be put on PrEP. Just based upon your
sexual risk factors. It’s really based upon
sexual risk factors. And how much of a risk
you are of acquiring HIV. >> Luckily, we don’t have
Medicaid telling us to eligibility requirements for
prescribing Harvonis. So it’s a really a per patient
and provider decision. >> Great, any last statements
from the panelists just about any last things you wanna share
about the work you’re doing and anything, or? I just want to say, it still
happens and it breaks my heart that I have new HIV 23 year old
African-American MSNs coming in with a new HIV diagnosis and
they see a pamphlet for PrEP on the wall, and they say that they
wish they had known about it. And so, that’s what keeps me
motivated to spread this word as much as possible, because it
works up to 99% of the time, if you follow the program and
take the medication. So I’m very passionate about it,
and I’m so glad that finally Baltimore City is getting the
attention of the government, and that we are really gonna be
able to make a difference. >> As someone who is passionate
about vulnerable populations, more specifically,
youth and young adults and the transgender population,
I just want to implore and encourage each and every one of
you to see where you stand with regards to people’s
gender identities and how your level of
comfort is with it. And how you can then go back
to your own organizations and do better work around
the acceptability of people who are transgender and or gender
non-conforming individuals. >> I have to say either we
have a lot of work to do and a lot of education around Hep-C,
that needs to happen, we’re trying to do a lot here,
and I just ask you you to
help us get the word out. One of the things we’re doing
is we’re training primary care providers across the city
that treat Hep-C. So Chase is a part
of that program, the Baltimore City
Health Department, some of the Johns Hopkins
Community Physicians, and a couple other, Total Healthcare
is also part of that. So hopefully that will help
increase our workforce. Here, we’ve also expanded our
practice to have more providers. We’re opening walk-in hours at
our specialty clinic in 2016, because I think we also have to
make it patient-friendly and make it a place that kind of
fits patients’ lives as well. >> Okay, I thank you each for
being on our panel. Can you give them
a round of applause? >> [APPLAUSE]
>> Good afternoon, everybody. >> Good afternoon. >> Let me try it again. Good afternoon, everybody. >> Good afternoon. >> It is first a pleasure to be
here with you this afternoon. I want to thank Carlton, Aaron,
Jordan, David Holtgrave for putting together this wonderful
opportunity to talk about the challenges in access to
care, access to services, based on various inequalities
that are out there, and being very up front
in talking about it. My name is Cyd Lacanienta,
and I’m the president and CEO of InterGroup Services. We provide an awful lot
of project management and research support for
a number of agencies and government agencies and
universities. In my other hats, I’ve
provided technical support as Maryland AIDSWatch Coordinator
for the National AIDSWatch to train advocates on talking to
your legislators on Capitol Hill about what the needs are for
people living with HIV, what the needs are for research,
what the needs are for additional resources to
communities hardest hit. So it is my pleasure
to facilitate and moderate this next panel,
because what we have here are talented
individuals who wear so many different hats as part of
just what they do every day. But what they do so
well is they clearly articulate strong perspectives based
on what they have seen has been the impact of HIV
in their part of the world. So it is my pleasure to
ask each one of them to introduce themselves. I will start with Bill Palmer. And most of these
panelists I have known, and Cody, I have tracked you. >> [LAUGH]
>> Based on what Cody is saying. >> [LAUGH]
>> [LAUGH] >> [LAUGH] So I’m really, very excited. Bill, would you like
to introduce yourself? >> Yeah,
I suppose I should use this. My name is Bill Reddenpalmer. I’ve been in Baltimore for
about 20 years now and working in the HIV community,
LGBT community, and I do a lot of work in the faith
community, interfaith work. And I have done a lot of
work in prevention education as well as HIV-AIDS research
in a number of areas. So I have many,
many hats on as Cyd says, trying to keep them all sorted
gets a little complicated but it’s important and
it’s meaningful work. >> Carlton? >> Hi, my name is Carlton Smith. I will start off saying that I’ve been very much
active in the community. Almost as long as Bill or
even longer. >> Longer.
>> [LAUGH] We’ve know each other
quite some years. We have criss-crossed
in doing some work. I’m more of a activist,
a entrepreneur, a business person, [LAUGH] and
a straight up advocate. I’ve been living with
HIV almost for 30 years. I am very greatly
passionate in the work that I do in the community. I’ve also served currently
as the Vice Chair of the Greater Baltimore HIV
Planning Council, and I wear one hat with a lot of jewels in
it, so that’s how I answer that. >> [LAUGH]
>> [LAUGH] I don’t wear too many hats. I have a lot of
jewels in my hat. So I’ve always been called
the rainbow king, so I’m grateful for that. Thank you. >> [LAUGH] Shontae? >> Good afternoon, everyone. My name is Shontae Springs. Wearing different hats is
a understatement for me. I was diagnosed with HIV
about five years ago. My day job,
[LAUGH] that’s one of the hats, is I’m
an Assistant Vice President for Credit Operations of branch and
Citibank. In addition to that,
I’m an advocate for HIV as well. I work also with
the planning council, and just have been what I consider
that magic middle and everyone here has pretty much
heard me talk about that. And the magic middle is
I’m that population that, I’m heterosexual, when I was diagnosed five
years ago, I was married. I didn’t kinda fit in all of
the categories that we kind of talked about earlier. I was just simply been a wife,
so where do I go for care? I don’t make quite enough
[LAUGH] to just pay for it outright,
even though I love Citibank. And at the same token, I don’t really qualify for
the low-income programs. So I represent
corporate America, and then those that
are living with HIV positive, but then also yet
being productive. That’s who I am. >> Thank you. >> Hello, everybody. My name is Coronado Cody Lopez
Dyer and my primary job is at the University of
Maryland STAR TRACK, where I’m a health navigator. And my second position is at
Morgan State University as a program facilitator for
the RAPP, the Real AIDS Prevention Project
and I also sit on several community advisory boards as a
youth member or youth co-chair. >> Thank you very much. Now, my first question
to all four of you has to do with research. As you know, this is bringing a
lot of researchers here to talk about the most
vulnerable communities. And you provide
a valuable perspective. You have researchers before you. As advocates, and based on what
you have seen, the communities you have served, the planners
you have talked to, what are the most pressing issues
that you would like researchers to focus their intellectual
power within the next few years? Oop, Cody’s. >> All right. >> Picking it up. [LAUGH]
>> As someone who identifies with MSM,
I think some research needs to go into MSM who
don’t identify as gay or bisexual or who don’t engage
in the ballroom community. I’m one of those individuals. I necessarily don’t engage
in the ballroom scene. So I’m missing a lot
of those messages and I know there are several men
who identify as bisexual who necessarily don’t
fit in those cases. There are men who identify as
straight who don’t fit into those spaces, but
are still having sex with men. And I think there needs to be
some targeted research in how you engage a population
that is attempting to be invisible because they
still need the messaging. And how do we convey messages
to black men in general to de-stigmatize HIV? I think as we continue to
talk about HIV as a gay man’s disease in most of these
gay identified places, we’re perpetuating stigma. So when we go out into
the community and try to talk to young black men
in general, it’s, oh, if I talk to that person now, I’m either
having sex with men or I have to bring down my masculinity or my
manhood and that’s not the case. This is men who have sex. I think that that
should be researched, not men who just
have sex with men. Because we are missing the men
who are also having sex with women. So I think that’s
where research should. Keep it going. >> I’ll just go in order. I would just like to say,
I would prefer research to go to that category I mentioned
before, that magic middle, where when necessarily
not consider gay but we’re just normal
average people. I know we talked earlier
about how it is negative but anyone in here
living with HIV and we talk about the stigmatism
that’s associated with it. I used to think that when you
can change the face of HIV because, as clearly, we’ve seen
that I have HIV, but I don’t think changing the face really
does the job at this point. Because when you change the face
we discredit those individuals that started in this race. I think what we need to do
is add more faces to it. And I think as we continue
to show the community that there could be different faces,
there could be someone that’s homosexual, heterosexual,
there could be a pastor, there can actually be
a professional, there could be a entrepreneur but
still have HIV and guess what? It’s not a bad thing. I thought my life was gonna end
when I found out I had HIV but to be honest, my life just begun and
I’m living life to the fullest. That’s what I think
we need to target. >> So, I’m in the age group,
as I call seasoned men, mature men, the men over 50. [LAUGH] I’m hoping, too, that researchers will
do more of behavioral. So now I’ve lived
in the rightful age of being 50, when I was told
in my 20s I may not see 30. Different dynamic,
different times then. Yes, kudos to treatment and
medicine getting us there but you know what? I go out and drink sometime. Why don’t you stay there. Sometime I miss my friends. Sometime I feel all alone. Oh is that battle discretion? I just answered. It’s not only myself,
but many other men. There are many other people
who are in the aging. I’ve lost my friends,
lost guilt, I don’t go out and meet people like I used to,
how do I get involved? It’s just not only men, but women are going
through this as well. Where do we talk about it? Are there certain places for us? So what are other
disparities that also haunt? You have diabetes. You have heart condition. There are so many things
as you progress in aging. Glad to make it to the top
of the hill, but now how do I continue to live life and
all the other cumulabilities and all the other things that
may be going on as you age. So that’s something for researchers to think about. >> So guys, should also to
articulated this will be my 21st year living with HIV and
AIDS so I had AIDS diagnosis. I started out with 151 T-cells
almost immediately after I was injected. So that was a challenging route. And one of the things is,
for someone like me, I’ve been on just about every
regimen there is to be on. And that is a challenge because
whenever you hear anybody, whether they do researchers,
doctors, or the media, they talk about
HIV from the perspective of someone who has been infected
in the last couple of years. And that is a very different
picture than people who’ve been infected for 10 or 20 or
30 years, who are dealing with all of the things that
these medications and disease have wrought upon
their bodies at that time. And then they started
reaching age. So then it’s like,
is it the disease? Is it AIDS? Is it both? But up until now
most of everything, the fact that I have
kidney failure, I pretty much know is related
to the Truvada I was taking. And those kind of things. Now it’s getting
a little less clear. So it’s important that we
continue to have novel classes of medication and that we have novel
treatments for those people because eventually the people
who are newly infected are gonna get down to the point where
they’re going to need those. But some of us are day to
day like I don’t have any regiments available to me. I’m praying that before
this one wipes me out or I have to stop it for
some reason because almost every regiment I’ve been on has been
because the drugs became toxic. They put me in the hospital,
they did something bad to me. So I’m hoping this regiment
holds on long enough until they come up
with some new drugs that aren’t just a little
variation or a new combination. Those are cute and nice and
having one pill a day is okay. But that’s not
the first priority. It’s having stuff that
works effectively. I think if I had to pick
something I guess that would be my first [INAUDIBLE]
>> Thank you. Now, the earlier panelist, Dr.
Gomez and Dr. Chalk, talked a lot about HIV
inequity in Baltimore City and how specific neighborhoods are
disproportionately impacted and how that overlays with race,
that overlays with poverty. What have you seen in your
travels as advocates, and what is your advice to
systems planners such as Dr. Chalk, Dr. Gomez, on how to
help those communities in need? So I live in the gay ghettos,
y’all don’t understand? Okay so let me break it down. >> [LAUGH]
>> So I live in Mount Vernon, which used to be called
the gay ghettos, but now it’s a high rent district. I’ll tell you what’s
the difference. Very very few people of
color are in that district. Used to be a mixture of white
and black men together. There isn’t as much. Many of the, Things that used to be,
the stores that used to be open in our neighborhood
are no longer open due to other frontier individuals
coming through. So I live right around just
over the highway where East Chase Street is. So that’s a whole different
neighborhood, but the addicts, the crack addicts,
the heroin addicts, are now venturing over on all
but the other sex workers. So we get a mixture
of at nighttime. You’ve got the club kids and
you’ve got the sex workers, and people out with
addictive behavior. So what can be done? More information about
how to get whatever you need to work with you. Sometime we come to these
institutions of knowledge and education and researchers
speak over our heads, hello, but I’m here. How do you reach me,
how do you talk to me and how to regain employment. Because, if I’m doing sex
work maybe I can teach somebody else to
save their life. Maybe I could teach them how to,
definitely about, not only about conduct but
I could tell them about prep. Because maybe I
institute the prep. And maybe I could have
that conversation and maybe that the young man
that come on and meat rack, we don’t throw them out. We don’t chase them away. But invite them and tell them
that somebody loves you and we gonna try to help you out and
meet where you’re at. Maybe we need to have programs
that look and talk like us. I think that’s
where we can really have a real conversation and
see the change. Once we learn how to
have the awareness and the responsibility, then I
think the change will come. >> [LAUGH] And I would just have
to piggyback on what Carlton said, who’s the best people
that can talk about this? Us, because we live it every day
and I think it’s pretty much, when I come to Baltimore cuz
I live outside of Baltimore. When I come to Baltimore, I can
pretty much count on their being a convenient store or what we
use to call a corner store and on every end of the street. I would like to see as many
places in there as a porn store. Every place that we pretty
much can see on every street, every street should have
some community based program where we can talk to all facets
of people living with HIV. Yes we have high-risk
individuals, we may have incarcerated sex workers,
we may have adolescents, but what about the people that live
in housing What about the people that live in the upscale
communities, where do they go? They may not be comfortable
enough to go in what we may consider the ghetto, even though they may have
been from the ghetto. But they may not be that
comfortable going there. We need to create a safe house
and a safe place for everyone in the community, whether you’re
a faith-based organization, or whether or not you’re just
a simple corporation. One of the things I did in my
site in Hagerstown was last year I did one of the first AIDS
conferences doing, which was it, World AIDS Day last year. Because I wanted to bring HIV
into the organizational city bank, and you will be surprised
how many vice presidents came to me afterwards. How many people sent me an email
afterwards wanting to know where can I get this information? I don’t feel comfortable going
to the health department, but I think I’m at risk. No one should feel that way. People should know that even for
instance, I was a wife at the time when
I found out I was diagnosed. Had I known PrEP was out there,
I had some questions here and there about my
husband at the time. Had I known that was even
available at that time, it’s okay for somebody married
to take that if they feel as if though that’s an option. I feel as though those
are the conversations and the places that we need to
engage those conversations, to make people of every
nature and every facet aware, then we can change
the community. >> I think mine pertains
to young people. I think two of the systems
that we need to address are the higher education
system and the housing system. The higher education system will
lock you out of that system, we are under 24 if you don’t
have your parents’ information. And we know for a fact that LGBT
young people face homelessness at a way disproportionate
rate than other young people. So they may not have access to
their parents’ tax information to fill out that FAFSA to
get that student loan. So until they’re 24, they’re out on the streets doing
what they have to do to survive. And I was reading an article in
the paper where it’s cheaper to buy in Baltimore
than it is to rent. And that is doing a huge
disservice to young people who work extremely hard to
not have a place to stay. To have to live in a one bedroom
apartment with six other people just to survive, because your
job is only gonna give you 15 hours this week cuz it’s getting
cold outside, people not coming spending money to eat, like they
usually are in the summertime. So these are things we
all should look at, we should look at the inequality
in the housing system, the private landlords and
the public who are charging astronomical prices to rent
rooms to young people in unsafe conditions because they just
had nowhere else to go. So those are the two systems
I think we should address for young people in general. To just have better
outcomes in their life, because as of right now I
believe it’s one in three gay men will have HIV in the next
few years, by 2020 or 2030. If we had someplace to live, and
didn’t have to get on Jack and Adam to have a warm
place to sleep. Cuz I know some
folks who do that, they don’t have
a place to sleep, so they will sell themselves just
to have a place to sleep, to shower, and then go right
back on the streets and do it the next day. So addressing those
two situations, the education system,
which would give you a place to live and eat while you’re
getting your degree, and just that housing
system in general. We can provide the foundation
for stability for a lot of young people
that they don’t have. >> The only other thing I had
is that thinking about how we address transportation
in the city. There are areas of the city that
really just are inaccessible. I know that just to get to
Hopkins from my house, and I live in West Baltimore,
I mean East Baltimore, sorry, it takes at least two buses to
get here, and a lot of time. So those access to
the resources that are out there is
not always good. And at some point hopefully
have an entree to access when the services
are actually available. >> It was a great segue
to my next question. The afternoon panelists talked
about poverty and HIV and health care access linkage and progress from
an advocate’s perspective. I’m sure each one of you
have your own ideas of what has worked based on
what you’ve seen, and what continues to be a challenge
for consumers accessing care, consumers trying to engage
in discussions about HIV. Challenges related to
getting tested, or whether they’re too scared because of
the stigma that they perceive. So if you don’t mind, share with
us a little bit about what you know and what you’ve seen. >> All right, so
I’m gonna address the cascade. You know that we have several
people falling out of care. But providers and advocate for
people all the time, if you don’t feel comfortable with your
provider, switch providers. But if you have insurance and go
to Hopkins you cannot just say, I don’t like this provider, I’m gonna go to
University of Maryland. They do not accept
the same insurance. You will actually be locked out
of that system for an entire year until open enrollment
becomes available again. So if you’re not liking your
doctor, you’re not liking the tone of the institution
that you’re going to, and I’m not pitting Hopkins
versus Maryland and Maryland versus Hopkins, I think that they should come
together collectively and figure a way around this insurance
mess, cuz that’s what it is. How can we get people
the care that they want and that they feel they deserve
regardless of providing how that system is treating me. I just can’t go to somewhere
else, so as a young person, they might just say f it,
I’m just not gonna go. And then you come back a year
later they are viral load, they shot up, and they become
infectious where they were suppressed, at one point, but because they don’t like how
the provider spoke to them, or they don’t like
the front desk staff, or they just don’t like the
policies that are in place here. They feel locked in that system,
and no one should be forced to go to a provider because you
can’t get out of your insurance. >> I guess I’ll take
a different spin on that. You were talking
about adolescence, I wanna talk about
from our perspective. I honestly have
private insurance, but as I mentioned before, I stand
that risk of one time going through divorce I had
two children in college. And the only way I could survive
once my little bit of alimony ran out was I had to put
myself through college so I can really depend on my refund
checks to have extra income. Everyone may not be I
guess in a place or position to even think that way,
so I can only imagine what some people end up
resorting to, because there’s been certain times that I had
to deal with whether or not I could even afford the copay
that goes with my insurance. Can I afford, now since I
had the insurance that pays my once a doctor visit, now I
have to go back to LabCorp to get blood work again
in three months. Oh my gosh,
I have a bill with them for $50. Do I pay the $50 bill
to get my lab work so I can make sure I’m still good,
or do I pay my electric bill? Oh my God, my son needs
something in school right now, so as a result, I didn’t think
it, to be honest, three times. Because I had to decide whether
or not it was my health, or do I wanna continue
with my way of living? And I think no one should
really have to deal with that. And so I think that’s somewhere
where we need to kinda, as we say this conference as
a symposium, is bridge the gap. I should not be in a position
where I have insurance and yet I can’t qualify for everything because it’s
a private insurance. And thank God,
I was at AIDS Watch one year, and these great people here
mentioned to me about MadApp. I didn’t even know what MadApp
was, but that’s something that should have been put up
to me in the forefront, that may have prevented me
from maybe getting evicted. Or may have prevented me from
sometimes my viral load not being good, because I just
stopped taking medicine or stopped going to my doctor’s
care because I had to set off with my children. These things should be at
the forefront for every one to know whenever you go to your
first initial doctor’s visit. These are the programs
that are available, so. >> Go ahead. >> So, it is my business as
being the vice chair of this great planning council to tell
you the resources that are out there. That’s what I advocate on. I advocate for everyone
living with HIV and AIDS, because I am a person
living with HIV. I go through the same thing,
it’s not pretty. I just wear a mask,
and I wear it well. Well what do you mean? There have been days when
I’ve been without food. There’s been days when I had to
choose between my medicine and my food, and if I’m going
to eat this weekend. Or scheduling, or as we said,
we put food here, you hoard food, it’s a reality. And it’s just not me, there’s many others who may not
be able to talk about that. It’s another of not being
able to say that you live in the Section 8 housing and you
are able to afford it based on what you receive once
a month at a SSI or SSDI. It is my business to get out to
other people living with HIV to tell them where
are the resources. To have a planning committee
like the PLWHA to raise your voice, to save from the streets
up to make the agenda. These are some of
the action items we need. We need providers to know this. I can’t pay my insurance,
there’s a gap, it’s a reality. I changed jobs, I’m trying to
make ends meet, it’s a reality. I have daughters, sons I got to
get to school, it’s a reality. Now I got marriage equality, my husband just got laid off,
it’s a reality. Or my significant other
has just been laid off. Or I have child care and
I have nowhere to put her, my child, man or woman. So these are some of the reasons
why it is so important. Not to hoard your resources,
but to share it. For a so-called me,
by the grace of God. >> Amen. >> And as Tom has mentioned, we’ve just now noticed the food
banks are taking an increase. Why, food deserts. People are hungry, people
are not able, let’s be real. Let’s have a real conversation. Whatever DSS is giving you,
$16 for a single person isn’t enough to
stretch you, for even a day. Now, imagine you don’t
have a grocery store, so where are you gonna
get your fresh fruit? And you know you need to eat. Because it’s a terrible thing
to have your mind wandering and your stomach growling,
or as we say, your stomach pressing
against your backbone. When you know you’re hungry and
you can’t concentrate. And, God knows,
look at the pills I’m taking. Thank God, they’re lower than
what they used to be 20, 30 years ago. But still, HIV is
a managed chronic disease, not for everyone. There are individuals who
has great side effects, who needs care, and let’s
talk about vulnerabilities. If you’re a diabetic, if you’re
not eating properly, guess what? You’re not taking care,
you start missing rents. You have high blood pressure,
you’re not thinking clearly. Your pressure’s always up,
you’re always tense. So these are the things as
a person living with HIV, not only myself, but
others also go over that, and especially when you’re aging. Because it’s not
turning back the clock, the clock is going forward. So what is it like for me at 52? What is it like for me at 62? What is it like for me 72? Am I going to have
affordable housing? Am I know I’m going to have
food, just in caring for myself, or even for my family? So these are the things
why it’s important for people like yourselves and people who are living with
HIV and AIDS to be involved. It starts with for planning
counsel, it starts with other planning bodies,
because your lives do matter. >> Sometimes after 20 years, it gets a little old having
the same conversation over and over and
over again about certain things. [LAUGH] Some of you know this. So, here’s one of the things
that really bugs the crap out of me because we’ve been saying
this for a really long time. Whether you’re a researcher, or
you’re a medical professional, I’ll give you an example. My partner is a school teacher,
and hears all the time, it’s all about the kids. You have to sacrifice your
personal time, and your stuff, and your money, and whatever you got over
to take care of those kids. Unfortunately, that does
not transfer in my opinion to the healthcare profession. It is not all about
the patients. Sorry, but it’s not. Because if it were and if it
were researches were all about the patients, there would
be doctor’s hours and times when patients who have
a real job can actually show up without taking time off of work,
okay? Let’s be real. So my spouse is a excellent
school teacher, has a Masters Degree
in Education, and works as a Junior
Administrator, practically, when there is not
a real administrator, they say where is he cuz
he knows everything. But guess what? He is not capable of ever
being rated as a highly effective teacher because
of the number of doctor’s appointments at a minimum he has
to take off for during the year. And they have told him,
I’m sorry. No matter how good you are,
you can be the best teacher in the world, you will never be
rated as highly effective, because you take
off too many days. Because you have to go to all
of those doctors appointments. And the doctors refuse to have
appointments, and the few that do, he’s got one that will
do it and will see him. The problem is, that the staff
that runs the front desk refuses to create scheduling
that allows even one person to stay late enough to check
the people in and out. So what happens is, is that he gets submitted
to have a new appointment. That appointment
never gets made. So he shows up for the
appointment the doctor told him to come to, and they say oh, you
don’t have an appointment, you have to go home and call and try
to get something rescheduled. Over and over and over. Even when the doctor went
to the front desk staff and said please tell us
what we need to do. The supervisor said, well, there’s a bin,
you leave it in that bin. So the next visit, they walked
up to the front desk and said where’s the bin,
can you please tell us? And the woman said oh no,
there’s no bin. I never told you that. So that kind of behavior where
this administrative staff treats patients with disrespect and we
could go on about that all day, those kind of
behaviors that happen. And when they refuse to
accommodate patients, even when doctors
are willing to try. How can you say that
the patient’s come first? Not one of you can do that. And that is a real problem. Because I cannot go out and
get a job. I have so
many different specialists and doctor appointments I have to do
during the year, that if I were to take off all those days from
a job, nobody’s gonna hire me. Let alone,
that I need flexible hours and I maybe need to take
a nap once in awhile and all these other things
that I got going on. >> [LAUGH]
>> Would just to keep up with my disease, so most employers
are like, hm, you want what? >> [LAUGH]
>> Sure, I can get a job at retail,
standing for hours on end, and then I end up getting sick, and
I’m worn out, and they fire me. So, nothing in this system,
and researchers. I have gone to research
facilities and I’ve said over, and over, you want to
recruit patients, go and create some hours that you
can have that bring in. Then they say,
well the lab’s not open, and this happening over, and
there’s always, always excuses. >> But it’s because the medical
systems refuse to even think about serving
the patient first. I’ll shut up for now. >> We’ve been given our
five minute warning. So I wanted an opportunity to
see whether anyone had any questions for the panel. So I saved my best question for
last. Rashad talked today about cultural presence
versus cultural power. As advocates, I have seen each
and every one of your work. And your power to change the perspective of
those who you talk to. Tell us how you can empower this
group to take cultural power so that the message can
come across effectively. And the needs of people
living with HIV and those vulnerable
to HIV can be met. >> I’m gonna share my message
and my message goes directly to young gay black men who are
positive who get in this field. When I first got
into this field, I started reading a book
of young men’s experiences. And one of the first stories I
read was, a guy who got into the field, his organization
pretty much used him. When he was 24 they kicked him
out and said he is no longer the face of their organization
because he has aged out. And my kind of way for
young gay black men to gain their cultural
power is to not be a face. No matter who wants to put
you in front to represent for an organization, know that you
still need to gain skills. And Make those skills
be transferable. Don’t just work in HIV,
don’t think that is the endgame. Think larger than that. Think larger than just
being a young person doing recruitment and
doing outreach. Because there are several other
jobs that you can evolve and grow into. >> Thank you. >> I would say as you continue
to have resources for individuals, if you first give
someone a diagnosis that they’re HIV positive, make sure you have
effective communicators and counselors available, someone that’s really
passionate about it. And I say that because
as I mentioned before, I thought it was
a death sentence for me, but actually the more and
more I go out and advocate, whether it’s someone that’s
young, I’ve had someone from 19 up until 72 years old find out
they was recently HIV positive. It’s the way you position it. And like I said, I thought
this was the worst thing that could have happened to me, but now I’m on a train that
just doesn’t stop now. My children are educated. Every year, I try to learn something
different that I didn’t know to get before. Citibank still has
me after 11 years. And I think people need to know
that there’s life after HIV, and it’s not necessarily
something bad. It’s just something different. And as with anything
else that’s different, we just have to deal
with it differently. But you still can live. And I think that if we put
that little twist on it, and let people know that, hey, one
out of every ten could have it, that’s going to be our
population one of these days if we don’t get in front of it. How do we make people aware
of it if we’re afraid of it? So I think until we start,
I guess really addressing, put a spin on it so it’s not so much stigmatism,
we can’t really empower people. And I think the only way that
we can really get to this is we empower those that
are actually positive. >> So I like to use one
of my favorite sayings. And it comes from Mahatma Gandhi
and it says, create the change you want to see or
you want to be in the world. And yes, I am my brother and
sisters’ keeper. Thank you.
God bless you. And the reason that I say that,
one of my outstanding things ever, was to be a part
of the planning council, but well better yet to create
a program that is now ongoing. And that’s Project Leap. And I couldn’t do that without the help of Cyd and. We were the first
two PLWHA Co-chairs. But now Project Leap is
going into their 19th class. It’s a beautiful thing to be
still on this earth to see your legacy still going on. >> Amen. >> And that it has enriched,
empowered and led many people who
didn’t even have a voice. Who have never thought of
themselves to be an advocate but they see what you’re doing and
say, I can be like him. Or, I can be like her. I can own that. I could be a leader, too. That’s so much empowering to be able to
go to your Congress people and say I’m a person living with
HIV AIDS and I pay taxes. And guess what, you don’t
do what I say, guess what, I have the right to
fire you by voting. Your first thing, community
mobilization, get the vote out. Isn’t that empowering? Isn’t that that you can
take charge of something that somebody had taught you. Somebody who’s embedded
that into you. So, that’ s why I say
create the change. Or you be that change, or even get back to Michael
Jackson, Man In The Mirror. Be that change. That’s what, each one of us,
have had reflections of. Because as [INAUDIBLE] said
you’ve got the power within you, you just have to expand. >> So, talk to two groups. One is if you’re living with HIV
and AIDS, you need to do what I was taught many years ago and
which worked. Is that the primary
characteristic of a long term survivor is to have
a sense of mission and purpose. And you find that
you can overcome. And you then need to
use your voice at every opportunity you have finding
the ways that people will listen because that is the most
valuable thing. What we know, for example, when people come out publicly
about being HIV positive, people around them say, oh you
know what, I know that person. It’s the same way with
people that are gay or lesbian or trans,
they come out and people say, hey, I have a real
person like that. And then I’m like,
maybe they’re not so scary. Same goes for HIV. So you have a powerful
gift to take what could be less than HIV. It’s hard to see as a blessing,
but you can make it one. And if you are a person who is
working in an organization, in medical care, in research. If you truly believe that you want quality out
of your organization, your research, or your medical
care, then you will talk. And not just talk, to mostly listen to people
living with disease. Once again, after 20 years,
we’re seeing the same old thing. Do not have them be a token at
your table, so that I can say, oh yeah,
I have that HIV consultant. That’s not what
I’m talking about. You really have to
have those people, and really listen to
what they’re saying. And take it seriously,
not immediately dismiss every, oh that’s not doable,
that’s not doable, because that happens so often. Or, oh yeah, that’s just them,
and then let’s move on. Every time I go in a room and
there’s 20 people who have all the greatest intentions
about working in HIV work and not one of them is positive but
me. It gets really challenging to
say come on people, I love this but you’re not even trying
to hear my perspective and you’re creating something
that sounds so nice and fancy, but what is it doing for
our community? And they don’t think
about that sometimes. You really have to have
that connection and listen. >> Well thank you very much for
sitting on this panel. I’d like to ask everybody to
give them a round of applause. >> [APPLAUSE]
>> I want to close this session because advocates, strong advocates are very
good with telling this story. I don’t know if you were
here at lunch time, when Congressman Cummings’
representative talked about those little handprints that
were on Congressman Cummings’ wall. I’ve been a community organizer
for over 20 years and have had the pleasure of
actually knowing the mothers and those babies from whom
the hand prints came. And was there when
those were provided to Congressman Cummings more
than 20 years ago when there used to be AIDS babies who
died by the age of two. Their life expectancy at
the time was two years of age. I was also there, more recently,
when Congressman Cummings was visited by a young lady who just
went through graduate school. Hers was one of the hand
prints that was on his wall. And I don’t think I’ve ever
seen Congressman Cummings’s eyes tear up so
much as this scene, because his previous stories were those
were the babies who died. Because of the work and the
research that has been done in this community, the baby with
a life expectancy of two years has graduated and is
working in the field with HIV. So thank you for all of
the work that you’ve done. And all of the work that
you continue to do. And I wish you the best of luck. And again, thank you Jordan for
this opportunity. >> Thank you. >> [APPLAUSE]
>> So it is about that time, everyone. I want to put a plug in for
those of you who have a moment to please stay and speak with
some of our Baltimore HIV-AIDS scholars, our young people who
are undergraduate students, ask them to keep presenting some
of their research in the room right in front of us and
we’re having a small reception. If there’s one word that I would
take from today it would have to be power. And it has been so,
I feel so fortunate to be here at Hopkins where we can
have the discussions and grow and
learn in this way together. So, thank you guys for coming. We will be posting these
videos to our website in the coming weeks and we’ll
send a blast out to you all. And we really do appreciate
all of you coming out today to be supportive
of this work. You being here allows us to
continue to do this work and it really means so much to us. And so, thank you from the
Center for AIDS Research, and also our community
participatory advisory board. Thank you all
>> [APPLAUSE] >> Thank you


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