81st Presidential Advisory Council on HIV/AIDS (PACHA) Full Council Meeting | June 6, 2024 | Part 3

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Jun 19, 2024
81st Presidential Advisory Council on HIV/AIDS (PACHA) Full Council Meeting | June 6, 2024 | Part 3
• PACHA-to-the-People Community Engagement Session
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>> Marlene McNeese: Good afternoon and welcome back to Day 2 of the 81st PACHA Full Convening
Council Meeting. I really want to say it has been an extraordinary day-and-a-half so far, but we are
really gearing up now to enter into what I believe is the most important part of our PACHA meeting.
Part of what I am most proud of since becoming a member on PACHA and before becoming a member
on PACHA and watching the wonderful work of my colleagues is how well we have been able
to encapsulate and summarize some of the voices of the community, those facilitators and enablers for
good work and what others are experiencing in terms of challenges and disablers to the work.
So, I really just have to say, your voice, those of you who have joined us
and signed up with us to give us your voice online, we take that extremely seriously.
Just a note of information, immediately following this session, PACHA leadership
will go into a working bit of deliberation. And we are going to be considering and reflecting and
sort of summarizing what we've heard, not only from your voices here in this session today,
but over the last day-and-a-half. And we'll come back and report back out
to this full body in terms of how we're going to incorporate what we've heard,
either into our own current strategic plan and priorities that we have lined up or if
you've heard or shifted something in us that may make us want to reprioritize.
I just wanted to say I was really energized by the last panel and close to the last comment
that talked about what we need to do. As a PACHA table, as leaders around the country,
the idea that our whole mission and charter for being is to help improve the delivery
of services and programs around HIV. And we do that in a number of critical ways. So, who PACHA
is, is an important advice and an important voice in ensuring that our federal implementation of
policies and programs are aligned in the way that meets community needs.
And we take your voice. We do that through letters, sometimes resolutions,
sometimes specialized work groups. We've even formed whole new PACHA subcommittees if we feel
as though the issue is so dire and important that it needs immediate and urgent address. And so,
we've done that repeatedly and will continue to do so. I just wanted to
remind the public and the community about the ways in which PACHA works.
But most importantly, we have heard today and again yesterday, PACHA members that we need to
push. So, we are listening intently, and we are going to take what we hear and hopefully
prioritize that in what we do in the short term, not the long term. So, short term, to me,
we'll talk about it some more today, but what are some urgent actions that we can take in the next
six months? So, with that said, I actually am the queen of recruitment. So, I have pulled another
one of our fabulous, new, young, energetic, PACHA future lead, future co-chair, Mister Marvell Terry
II, to join me and help facilitate the dialogue and conversation. Because we do like to be rich.
We are capturing notes. So, whether you're lending your voice online, or you're lending
your voice here in the room with us, we are capturing the highlights of what it is that
you would like PACHA to hear and what you would like PACHA to consider. And with that said, I'll
turn it over to Marvell to see if he has any other additional notes to make before we get started.
>> Marvell Terry: No additional notes. I would say, please speak
your mind. That is my philosophy. And we encourage you to speak so
people can hear you virtually as well as in the room. So, that is my comment.
>> Marlene McNeese: Thank you, Marvell. So, I will lean on whose hands I see raised,
virtually, in queue. I know we have a number of you who are signed up online, and I hope that
you are not just signed up to listen, but you are here to actually share. And then,
of course, we will bounce back and forth with those who would like to share in the room. So,
do we have anyone online who would like to provide and offer comment to this body, to PACHA?
And in usual fashion, you know that I know many of you, and I will and can and do often call you by
name. Okay. I will queue up some individual then, that I know in the room. Let's start with a friend
and colleague. I actually was trying to have a sidebar with her on one of the breaks, but I am
extremely excited from the panel this morning. You all know that we heard about the sort of
state level approaches, systems level approaches that could be had in some of the important work
happening in certain state health departments and health commissioners around the country.
And just recently, I was in D.C. a week and a half ago. Has it even been that long? Just
here for the annual NASTAD meeting. And it was such an important convening. And for the last
couple of years, there's been a real push and movement around addressing clear inequities and
disparities that exist within some of these systems and what are some ways in which we can
challenge these institutions, if you will, these public health institutions to behave
and do things differently. And that takes a lot of heart. And it takes a lot of courage.
Clover Barnes was recently named as the incoming board chair of NASTAD. And I am excited that we
were able to have her in the room with us today. And Clover gave a very moving charge
and challenge to all of us who work in these institutional systems and literally had me in
tears and really gave me a charge to go back home and begin initiating some new steps. So,
I do want to pick on Clover a little bit, if you can share with us some of
your perspective and approach about what could happen differently in these public health systems.
>> Clover Barnes: So, good afternoon. I am Clover Barnes, as Marlene just
so eloquently introduced me. And I thank you for allowing me to address you today.
As the NASTAD board chair, we have a chair's challenge, and my challenge to
all my health department colleagues and other AIDS directors around the nation is to center
Black women. And our syndemic approach is to end the HIV epidemic. And that is
anybody who identifies as a woman, to center them, Black women of color,
Black women who may be of Latino descent as well, center them in your syndemic approaches.
If we look at the data of new HIV diagnosis, we see that the number of Black women who are
newly diagnosed with HIV is on the rise. And we know that Black women do not see themselves
in the HIV epidemic. There are very few Black women on PrEP. There are very few Black women
who see themselves as a person who needs to do something to prevent them from catching HIV,
from acquiring HIV. And so, that is my challenge.
The second part of that challenge is to increase the number of Black and Indigenous people, other
people of color, in Health Department leadership. We know that as leaders reflect the epidemic,
the programs, and the policies that come from the Health Department are more inclusive,
they are better received, and people see themselves in what is coming from their
state or local health departments. And so, I am happy to introduce you all to my challenge and ask
for your support as we work to center Black women in all things that we do to end the HIV epidemic.
>> Marlene McNeese: Thank you. And that was such a good and important validation about some of what
we heard yesterday in our conversations around what do the data say, both quantitatively and
qualitatively -- thank you, Tori, for reminding us -- in our own experiences and what we're hearing
directly from people and patients about what is simply not working. And I think we spent
far too many years talking about those that just be the things that are not working. And
if we don't intentionally push differently, I loved -- I think it was Dr. Cheever's slide,
the pillars of EHE and what are we going to do to implement these differently? We are going to come
back to this conversation, year over year. And quite frankly, I'm not interested in doing that.
So, I do want to continue with my picking on people because I do think it's related
exactly to what you were talking about, Clover. But on yesterday,
we actually had two public comments, one from Shelby County in Tennessee,
related to some critical things happening there. But we also heard from Bernice de Russo. And so,
I see, Bernice, that you've logged in. Don't know if you are ready or queued up at all to
go. But I did think some of your commentary was really, really critical, especially as it
relates to women of color. And I wanted to just offer sort of a follow up and a segue to you if
you wanted to expound more on your comment or say more about what you see the role of PACHA.
And I can't tell if Bernice is on mute or not [laughs]. Okay. We'll move on and come back.
And you all, just let me know if you see folks or hands in cue that I do not see. But go ahead.
And I see our former PACHA extraordinaire, soon to be Dr. Doctor. That's what I will call him,
Dr. Doctor. Justin Smith, if you would be so kind as to offer up -- and thank you
for your time again. You spent the last two days, back in and around this table.
And so, we really appreciate you being here. So, yes, welcome.
>> Justin Smith: Thank you, everyone. And it's great to be back around with
my PACHA family. My name is Justin Smith, use he/him pronouns. I am the
director of the Campaign to End AIDS at Positive Impact Health Center in
Atlanta. I'm also a Doctor of Public Health student at Harvard University in Boston.
One of the things I was really pleased to hear throughout the comments yesterday and today was
the conversation around braided funding. I know that Director Rees is also very interested in
this as a concept. And so, I'm wondering, given that we're in a reality where we're
probably not going to get more resources from the Congress to do the important work that we do,
braided funding is going to be something that's going to be very important as we try to innovate.
What -- and I guess for our feds around the table, are there things that PACHA could do to
help encourage and promote that and make it easier to do? Because I feel like that's an
area that certainly feels that it's in the direct purview of PAHA to give advice to the
Secretary about how to promote that. So, if you have thoughts around things that would help make
that work easier, we'd love to kind of hear a little bit more about that. So, thank you.
>> Marlene McNeese: Thank you, Justin. Thank you. And I can't see a name online,
but I do see your camera on. I think your mic is on as well. If you would
like to offer up a comment? I think it's Francisco Valdes.
>> Francisco Valdes: Oh, yes. Thank you. Hi, good morning, everyone. My name is Francisco
Valdes from UCLA Los Angeles Family AIDS Network. I'm a coordinator to this program,
and we have a program for women of color with HIV to keep them in treatment and
engage in medical care. My comment is to expand funding for -- especially for pregnant women,
for housing. Here in Los Angeles especially, there is a big problem with housing and a few services,
especially for women. I have not been in the prior sessions,
but that's one of my comments. So, thank you for allowing me to speak my opinion.
>> Marlene McNeese: No, thank you, Francisco. And,
yes, you may not have been able to log in on yesterday, but there was a really good
conversation about the importance and priority around housing needs, particularly for those
at risk or vulnerable for HIV acquisition and those actually living with HIV. So,
it is important and on our radar. And thank you for adding your comment to it.
>> Francisco Valdes: Thank you.
>> Andrea Callow: Hi. Oh, of course. Is this on? Good.
>> Marvell Terry: Yes.
>> Andrea Callow: Hi. Andrea Callow. I'm with the Administration for Community Living. And this is
actually in response to the last two comments posed about housing and braiding and blending
funding. The housing accelerator project that we are involved in with CMS and HUD
does exactly that. So, you have eight states and the District of Columbia that are part
of a learning collaborative trying to figure out how to leverage each other's resources,
you know, streamline and braid and blend funding to ensure people are housed, people coming out of
institutions or at risk of institutionalization, and those with housing insecurity. So,
I think that really hits the nail on the head, and I'm glad this was brought up. So, thanks.
>> Marlene McNeese: And really, if I can add a little bit to
what you shared, and Justin as well, I meant to chime in with a comment and a little bit of a
question about funding. And that's what I really enjoyed from that first panel, just looking at
alternative approaches to funding. I won't spend a lot of time talking about our experience in Texas
because you all were just there, and you heard firsthand what a number of those challenges are.
But we were able to take advantage of an 11-15 waiver demonstration project for several years,
I think about five years, until that particular waiver came to a close. And
it allowed us as a public health department to take advantage of about $122 million over the
course of those five years, new funds to support the delivery of created programs.
The Texas Medicaid expansion piece has been a stalemate for many years.
But the health care transformation waiver -- that's what it was called, by the way,
the Texas Healthcare Transformation project -- really focused on two funding pools, one that
included uncompensated care, of course, but the other focused on these sort of incentive payments
for innovative delivery of services. And so, we were able to take advantage of some of those.
And what I really liked about Commissioner Kinsley's comments -- because it's a fine line
between -- and I am never going to debate -- do supportive services assist? Yes,
they do. But to say that those individual projects, that they're really a replication
or substitute for real expansion of healthcare coverage, the answer is no.
So, while we were able to, as an organization, as a system, as an institution, take advantage
and add more resources and did expand coverage and services to a select few,
there's nothing that compares to a system-level intervention like Medicaid expansion and adopting
that that has broad, wide coverage for a great deal of people. And we've seen
examples of what happens when states do that more recently. That was shared with us today,
but also in Louisiana, et cetera. When states have moved to do that, we've seen tremendous strides
for people living with HIV. Just wanted to add that piece in. So, thank you. Clover, go ahead.
>> Clover Barnes: So, just as an example of innovation in housing for people at risk for HIV,
we have a PrEP and housing program here in the district where young men of color,
ages 25 to 35, who are PrEP naive and homeless or unstably housed,
are able to receive housing for up to two years, free of charge.
We give them employment and education services through a partnership with the Department of
Employment Services here in the district. And we also give them PrEP for free. We take them to the
clinic and make sure they get back. And that has been very successful for us. We use CDC and the
HIV epidemic funds for that. We are looking to write it up, so maybe we can expand it.
But so far, we've had three graduates. They are all HIV negative. They are all stably housed,
and they are all working full time. So, I think that is an example that it works.
>> Marlene McNeese: Yes.
>> Clover Barnes: And just a push to be creative and have more flexibility and funding so that
things like this can happen. We are looking to create a trans housing program for our next one,
for people who are PrEP naive and unstably housed. And so, there are ways that you can
help populations who are at highest risk for HIV by addressing their social determinants
of health and keeping them HIV negative if we have good funding and flexibility.
>> Marlene McNeese: That's right. Thank you. Thank you,
Clover. Excellent example. And I really do have to say that around funding flexibilities to our
federal colleagues who are around the table, many of you have done and made great strides
and efforts in ensuring that those kinds of flexibilities are built into what is
received locally in terms of funding and support for some of these innovations.
And I think some of the gap that may still exist are institutions,
organizations who may not yet realize and/or believe that those flexibilities are real. So,
the idea that folks like Clover and the program she just described,
being able to really create and think and blend some funding together that has tremendous outcomes
is extraordinary. But I think that might be where we may need more help is how do we get the word
out? How do we promote the flexibility that currently even exists in some of the funding?
I even have a hard time with local colleagues when I say, "No, no, no,
we're allowed to do that already." Well, where does it say that? I'll have to take you to it. It
exists already. They've given lots of guidance. So, there is a little bit of disconnect. So,
just for our federal colleagues around the table, may take more promotion of getting that message
out. I'll go to one more tent in the room, and then we'll go online. I see you, Amelia. We are
coming to you next. So, Dr. Harrison, you are up first in the room, and then we'll move to online.
>> Timothy Harrison: Can you hear me?
>> Marlene McNeese: Yeah.
>> Timothy Harrison: Yes. I just want to pick up on the whole flexibility issue.
I think one of the things that we also need to do, we understand that money is so siloed,
and that is sort of driving the difficulties or any attempt around bridge funding. And as we move
towards the syndemic conversations, our funders need to also move, meaning Congress. And so,
we need to be able to educate and apprise Congress, our funders,
that we are operating in this syndemic space so that when funding is coming our way,
that it is really taking into consideration how we really believe we want to solve this epidemic.
And the siloed funding, I think, is just a road to nowhere ultimately.
Because you're only going to get so far with the abilities to do
the kind of braiding with the siloed funding that we have. So, I think we need to do a much better
job of bringing other members of this process up to speed on our approach around syndemics.
>> Marlene McNeese: Thank you. Important point around that. Because we are all
recipients in some way, shape, or form of those kinds of congressional allocations
and the idea that those are the beginning places where we are now pushed and boxed
into specific line items and funding items and allocations that are very restricted. And so,
I do thank and appreciate your comment about ways in which we can also educate our communities about
that's how we can begin taking steps to ensure greater flexibility. It has to come with educating
our communities, who can then educate all of their important stakeholders as well. Thank you.
We are coming to you now online. My Texas colleague, it is good to see you
again. Thank you for always being a Pacha supporter and lending your experience and
expertise. You all do important work on the ground, so I'll turn the floor over to you?
>> Evelio Escamilla: Thank you. Can you hear me?
>> Marlene McNeese: Yes, hear you perfectly.
>> Evelio Escamilla: Wonderful. So, I want to tell you guys that I really
appreciate your meeting. It's been very enlightening, especially the demographic and
also the presentations on the new surveillance report. As you can tell,
maybe some of you have seen, we've been releasing some graphics on LinkedIn and
other social media about what we see among Latinos and Hispanic populations.
I just recently did a training with our Ryan White Planning Council and did an introduction
on the data that compares the Ryan White Compass dashboard versus the AHEAD dashboard for those
that participate in the EHE. There are huge gaps in the continuum of care in those two
different systems. And so, that's one of the things that we are working on here,
and I hope maybe you can look at it, too, is looking at those two dashboards and see the
big difference in how we are achieving some of those health outcomes. I think you would
really appreciate really looking at that data and comparing both. Of course, Ryan White is an
excellent program, very integrated, but we don't see that integration outside of Ryan White. So,
when we have to address those issues that are people that are out of care or people that are
getting insurance and getting care from private insurers or private doctors, we have to figure
out ways of reaching out and expanding the bubble so that way we don't leave them out.
You know, we have to address some of their needs, whether it's on the prevention side and
also on the care side. I feel that sometimes we need to be a little bit more innovative,
both on the prevention side and also on the care side, to address those people that are
in the periphery of Ryan White care. We have to figure out ways of reaching out to those people,
you know, expanding eligibility, making more services available to those people outside,
not being afraid that some clients might be poached by a private insurance or private
doctor. Those things are things that we have to address. As you see, I think looking at
those two dashboards, it'll give you some way of being -- trying to figure out ways of being
more innovative with that EHE fund, both on the care and the prevention side. Thank you.
>> Marlene McNeese: Thank you. Thank you. Very important observation about how and we need to
assess and analyze and what we need to look at. I saw another camera pop on the screen,
and I can't see your name. But you are certainly welcome to contribute. The floor is yours.
>> DeMarsh Tarver: Hi. My name is DeMarsh Tarver, and I work for a community-based
organization in the Chicagoland area. And one of the things that I see in my work is that
community-based organizations seem to be sort of downplayed. And oftentimes,
I'm in the street, and I'm sort of right at -- I build trusting relationships with
the people that we serve. And I'd like to see in this conversation the inclusion of
community-based organizations because they play a critical role in our communities. And oftentimes,
community-based organizations are overlooked in their importance of having personal relationships
with people as they are getting reengaged in care, as they are looking for housing.
Housing is, as we know, is critical across this country, especially when we're dealing with
different social determinants of health that surround that. So, as a person who works for
a community-based organization, I'd love to see the inclusion of community-based organizations
and their importance in ending this -- can't talk today -- ending HIV and expanding into
other wraparound services that go with that as well. So, I'm just going to leave that there.
>> Marlene McNeese: Well, thank you, Mr. Tarver. We heard you loud and clear.
>> DeMarsh Tarver: [laughs]
>> Marlene McNeese: And I think there are many who were excited to hear your comment
in and around the table in this room. Because we know and have long since understood one of the
evidence-based strategies that has fueled our progress in this response in this country has
been the use and the movement forward of the work through community organizations. And the
idea that we're now talking about who persists with these inequities, we were startled by the
data presented yesterday around the Latino community. We were startled and continue to
be startled about what we see happening with trans, cis, as well as all women of color.
We know that to get to this last sort of hurdle, this last stretch in this marathon
of ending the HIV epidemic, we've got to have a different approach and a different response.
And I think community organizations play a vital key. And if we don't figure out a way to increase,
expand, undergird all the things for community organizations, even a lot of the work that you
may hear myself, Clover, or any of the other sort of institutional public health colleagues say,
is that we can't do what we do without going and relying and depending upon your touch,
your reach in these important populations. So, thank you for bringing that -- lifting
that comment to us, and we take that very seriously. I appreciate that. Anyone else?
>> Marvell Terry: Madam Chair, if I could speak?
>> Marlene McNeese: Yes, please.
>> Marvell Terry: Thank you. I know there's been a
lot of conversation -- let me stand where you can -- can they see me?
>> Marlene McNeese: Now they can. Come on. Come on over here. There you go [laughs].
>> Marvell Terry: There's been many conversations about my hometown of Shelby County, Memphis. And
what I want to contribute to this space is to acknowledge that there's only one organization
doing HIV testing as an outreach component. And so, that's not to say that HIV testing is not
available. There's only one organization that is going out into the community and doing HIV
testing, and this is not an HIV organization. It is a reproductive justice organization
funded by AIDS United to do some HIV work, and they're using that money to buy the HIV test.
And so, I wanted to put that into context as we look at our grant making, addressing syndemics,
addressing intersectionality, that this is an organization that is doing reproductive
justice work, harm reduction work, and doing HIV testing. And there are many other organizations
in the city that get HIV funding. But because this organization is not an HIV organization in name,
they are getting declined from grants. And so, just wanted to also contribute that to the space.
>> Marlene McNeese: Absolutely. Thank you. Anyone else struck by this new concept around syndemic
policies? Like Jesse, we live it, we breathe it. I mean, this is the work that we do day in and
day out. But when presented in that same light the way it was today, it really gave me a charge
to really relook at how I might be engaging stakeholders, locally, at the state level,
at the federal level, et cetera, about explaining why we are stalled in this country.
We certainly have all of the tools, right, of ending the HIV epidemic. And I get asked this
question all the time, locally. Well, why aren't we there? And the idea that we need
to begin describing some of these challenges through that lens of these are a combination
of policy disablers that continue to hurt and harm in ways that makes this virus persist,
these syndemics persist. So, it did give me charge. I don't know if anyone else feels so
inclined to talk about what you may have heard or how that may have resonated with you around the
concept of syndemic policies, but it certainly struck me. Go ahead, Carole. Yes, please. Yes.
>> Carole Treston: Dafina and I have talked about this, that concept of policy syndemics and seeing
all those maps and how they're all interconnected. And, of course, it's much larger than HIV,
right? What maps I don't think he showed was poverty rates and other factors. And there's
another map that I use in my talks that is also maps the same way, and that is full
practice authority for nurse practitioners. And that really has to do with access.
I know I bring up nurses all the time, but I bring up nurses because that is a way to improve health
access across the board, whether it's about HIV, whether it's about transgender care,
whether it's about primary care. It's expanding nurse practitioner practice authority so that a
nurse practitioner can practice to the full extent of their education and licensure.
And when you look at the map, which if you look at the Association of Nurse Practitioners, they have
a map, and it shows -- this is determined at the state house, at the state level. It's across the
South that has the most restrictive licensure authorities for nurses outside of Louisiana.
Louisiana does have full practice authority. But all the others map the same way.
And so, when we -- that concept of policy syndemics, yes, we honed down on HIV
criminalization. We honed down on HIV rates. But it's much more than that, right? It's about access
to healthcare across the board. It's about poverty rates, et cetera. And that was really
eye-opening today. And then I have to, of course, put my piece in about practice authority. Right.
[laughter] >> Marlene McNeese: Thank you, Carole. Thank
you. I'll go to Kaye. And then we'll come back to Guillermo.
>> Kaye Hayes: Great. As you're talking about the intentional work that we do,
and I've heard about the maps, there's another map that really
anchors when we think about the work that we do, and it's the lynching map. It is the same map.
>> Marlene McNeese: Yes.
>> Kaye Hayes: So, we need to intentionally think about the work that we're doing and how we do it
and where we do it. I've heard that discussion in many different ways today. But as we start
talking about maps, I'm like, let me add another map to this process, and really amplifies for me
that urgency and that fire in my belly for us to that urgency of the work that we do and being very
intentional about it, whether it's braiding, whatever my background, we talk about rhetoric
and communication, whatever we want to call it [laughs], that is the communities -- those
are the communities that we need to serve and be very intentional in the work that we do.
>> Marlene McNeese: Thank you. Thank you. Guillermo. And we'll go back to Justin.
>> Guillermo Chacon: Thank you. I just want to underline the several issues that were mentioned
today on PACHA to the People. I truly believe that we need to remember -- and also the previous panel
about how important is housing, food -- those key elements will secure that people will stay
in care. And I think another remark was how we need to revise our strategies to engage
those that are not in care or the indicators to reach viral suppression are not there.
And even though we celebrate and recognize the amazing accomplishments of the Ryan White program,
from leadership to, you know, the engagement throughout the nation in Puerto Rico,
we want also to remind ourselves that we need to go deeper and address the issue of homophobia and
transphobia. Stigma is still a major barrier for a lot of people to connect with those most impacted.
And as we closed last month, May, and the CDC released the data, we also need to
pause and need to analyze that data and again, beginning to create that type of
balance between access to treatment and care with prevention, and right in the middle,
those social determinants of health that define if people will be able to stay in care and reach the
goals toward 2030. And I want to also personally congratulate Clover on your new role. NASTAD is
in good hands. You're a fine leader, and we celebrate your accomplishment. Thank you.
>> Marlene McNeese: Hear, hear. Justin.
>> Justin Smith: So, just, this is a call out for some of my researchers around the
table and also for Jen at KFF. So, one of the things that I've been curious about -- and I
was really pleased to have folks from CMS. And we've sort of seen the importance of Medicaid
to making sure that folks have access to care. And being from a state, Georgia,
that has not fully expanded Medicaid, but which has an 1115 waiver that requires work for access
to Medicaid, I want to know if there's any data that specifically looks at the impact of states
that have enacted 1115 waivers and what that means for access to care for people living with HIV.
Where I'm going with this is that understanding that data,
given that PACHA's purview is really to advise the Secretary,
that might give us some information to opine to the Secretary about whether or not he,
in conjunction with the CMS administrator, should be approving the 1115 waivers from states that are
pushing work requirements, specifically thinking about the impact this has on the HIV population.
So, I'm not a Medicaid expert, but Jen, your shop may have done an analysis like
this that looks at kind of the impact. So, this is a free dissertation idea,
if that's something that hasn't already been done [laughs].
>> Marlene McNeese: Thank you, Justin. And I certainly see Tori in queue. And Jen,
I'll come to you next if you have a need to respond. Go ahead, Tori.
>> Tori Cooper: Thank you again. So, I wanted to bring up perhaps a future talking point for
later on today, once we finish with this discussion. It's really about volunteers,
peers, and community health workers, I think -- and it ties into the comment earlier about
community-based organizations as well. We all know, everybody who's on this call knows the
importance of those -- the folks who do that work. Because quite often, as Carole knows,
I'm sure, these are folks who serve as nurses, sometimes provide as fill-in doctors,
medical doctors, and fill-in parents and every other level and capacity.
So, I'm always interested in hearing how we can provide more support for the people who
are doing this work as volunteers, as peers, which I believe is one of the most unutilized
and untapped resources that we have in the fight against HIV. Say that again? Without question,
because -- she said, "Pay them," for those who didn't hear. And that's how they become community
health workers sometimes. That's the difference. They go from volunteering to being an employee.
So, I'd love for us to have more conversations about that in the future and even have folks who
serve in those positions currently. Because some of us have. Thank you,
Yolanda. I see your comment. Some of us have served in those positions previously,
and I'd love to hear more from folks who are currently in those positions,
talking about the relevance of their work and how we can greatly support that.
>> Marlene McNeese: Absolutely. And some of you may not know my entire history,
but that was my foray and entry into the HIV space, was as an outreach community
worker on the street trying to educate and inform minority women. And it was a small,
small operation from the state Department of Health Services in Texas. However,
that work really laid the foundation in many communities to have any level of access into
some of these services. So, thank you, Tori, for adding that important comment.
And I do want to make sure I don't lose or leave anyone online who has an interest
in getting in queue. If there's anyone else who's willing or interested to make a comment,
please feel free to chime in. Otherwise, I'll go back to the table. And I do know that there
are some comments that are coming up in chat. And whether or not we've got some visibility
on what folks may be entering into the chat, but I definitely want to say to Rosalie and others,
I would love to capture that for our notes. Whether we can do that real time
or whether or not we can add them to the notes later, I want to make sure that we
capture any chat conversations or comments online. And Duvia, I see you chiming in.
>> Duvia Lozano: Thank you. I just wanted to add to the
conversation that Tory mentioned with regards to our volunteers, our peers,
and our community partners. It is important to also be inclusive of our Latino community
and people that do not have a legal status in this country. We have a lot
of immigrants in this country, Latino, and from other areas of the world, from all over the world,
that are acting already in positions of volunteers and peers and mentors and doing extraordinary
jobs. And it is very difficult to incentivize these individuals. But there must be a way that
we can pay these individuals back for their time that they're putting into these HIV efforts and
ending the epidemic. So, I just wanted to make sure that we are inclusive of that as well.
>> Marlene McNeese: Thank you, Duvia. And if some of you remember some of the conversation in Texas,
a number of organizations are being able to do that level of mobilization and inclusion
by some private partnerships. I won't call them out by name because a lot of that work is done,
quite frankly, in some creative connections and possibilities. But here's where public-private
partnerships absolutely make a difference in being able to reach, connect, and support some
communities in new ways. And to me, I don't see a way forward, especially for Latin communities
and immigrant communities without it. You may share your strategy, Tori. Yes.
>> Tori Cooper: So, I have had a lot of coffee today.
[laughter]
But I'll share a strategy that worked well. And it was something -- I won't name the pharmaceutical
company, but it was something that we worked in in conjunction with one of the pharmaceutical
companies who was funding a project that we were working on. This is when I worked at Positive
Impact Health Centers, as a matter of fact, where Justin currently works. And one of the things that
we did was we wrote into the grant that folks were able to choose how they would get paid. And so,
making sure -- obviously, making sure that it was legal. But folks could be --
>> Marlene McNeese: That's right.
>> Tori Cooper: We have to make sure that, you know --
>> Marlene McNeese: That's right.
>> Tori Cooper: -- particularly when we work for pharmacy -- that we were providing an
opportunity for them to get a gift card or work, what is it, a 999 [sic], where
they were an independent contractor, or if we would take out the taxes. And so,
Ford, what it did was it allowed people who perhaps would not be able to benefit
from a traditional economy to still get paid equitably for their work.
I encourage us to be really, really intentional and creative and also continue to have open
lines of communications with our funders so that we're able to incorporate more of that. Because
you spoke specifically about Latino folks. Most of -- yes, without question, most of the
folks that I know for whom Spanish is their first language that are doing the most impactful work,
are either currently undocumented or have been at some point. And it's a shame that many of them
are suffering so much, financially, simply because they're working, they just can't get paid to work.
And so, we have to really, again, be very strategic and innovative, communicate with our
funders about ways that we can do that equitably. But that was something that worked really, really
well and everywhere -- well, I've only worked [laughs] one other job since then. But we've
created different pathways for people to get money that they deserve for work that they're doing.
>> Marlene McNeese: And I see Miss Ramos, you had chimed in queue. And so, I definitely want
to go to you next. And my co-lead, Marvell, is back monitoring the chat. So, he's going
to read out some comments there. But we'll start with you, Ramos, and then we will go to Marvell.
>> Marilynn Ramos: Hi. Yes, good morning. I am Marilynn Ramos, and I am a peer navigator
in California, Los Angeles County. And I just was able to log in now,
and I didn't hear the rest of the comments. But I did want to bring up something that
as a peer navigator, I'm seeing a lot of struggles, and it's housing and, you know,
services and resources for the undocumented, like they had already mentioned. You know,
unfortunately, we don't have that housing resource for undocumented positive women or just in
general. But my focus is cisgender women of color. And this is something that, as a positive woman
myself, I had to learn how to navigate the housing system, the medical system, on my own.
And I really want to highlight the work of a peer navigator because given the opportunity
to be a peer navigator now has been life changing for the women that are being recently diagnosed.
And given the opportunity to learn so much on my own and educate myself in regard to the housing,
I mean, it was really hard for myself. And I'm born here in California. You know,
I have legal status. And even with that, it was very, very difficult for me to
obtain housing or any services for myself. And so, I really want to just emphasize
the need for housing for undocumented and documented women living with HIV.
And this also comes -- I know it's very limited here in LA County. We only have maybe about two
transitional housings that take women that are positive. I do have five children. So,
I've kind of ran into the problem that it goes by bedroom. So, if I have -- I have
to be under three in my household to be able to qualify for a one bedroom. And if I'm any
more than that and they only have a one bedroom, they're going to go to the next person that fits
that criterion. And so, what happens is that I get left, you know, out in the street still,
trying to figure out my diagnosis, my health. It comes with substance abuse as well.
And I just really want to emphasize how important our peer program is. Because we do have a peer
program. It's called Friends Helping Friends, through the EHE initiative. And it's just life
changing to know that there is a woman out here that is positive, that is able to assist,
that probably has gone through the same things or worse, but kind of just hold the new diagnosis or
the women that are out of care or just not really mentally in the space to take care of themselves.
And so, I really want to just reiterate that -- how important it is. Peer programming is
very important. I think that my life would have been so much different if I would have had that,
you know, peer to assist me. Because I was diagnosed at 19 years old, six weeks pregnant,
and I was, you know, an addict at the time. And I didn't know what to do with myself. And so,
yes, that's kind of what I wanted to say. Thank you so much for giving me the opportunity. And
then I hope to join more of these meetings so I can, you know, put in my two cents. Thank you.
>> Marlene McNeese: [laughs] Thank you, Marissa. And we hope you join more of these meetings as
well. The room is applauding you right now. Thank you for those insights. And I do want
to go to Marvell. And I do think it echoes -- I'm glad that you shared in your example,
Marissa, one of the programs that are actually working and having real impact, supported through
these flexibility mechanisms like EHE. And so, I appreciate you lifting that up.
And so, I see Dr. Capt. John is in queue. I'm going to go to him as our final comment
after Marvell. So, we'll -- Marvell,
he'll read the chat. We'll close out with Dr. John. And then we'll go to break. Thank you.
>> Marvell Terry: Thank you so much, Marissa, for your vulnerability.
Our most recent comment is from Evelio Escamilla from Texas. The comment says,
"More R24 and R25 HIV centers and training from NIH institutes to develop Black and Hispanic
early career investigators, Hispanic-serving institutions and historically Black colleges,
working with Hispanic and Black work groups that work with the different institutes at the NIH.
>> Marlene McNeese: Outstanding. Thank you. Thank you. Yes.
>> John Oguintomilade: So, thank you. I just wanted to contribute to
the conversations regarding the community health workers and how we can continue to
strengthen this cadre of folks to be able to be reimbursed for the good work that they do
and also expand the opportunities to serve the communities towards ending
the HIV epidemic. I saw a good example in Mississippi when I had a side visit there.
I visited the Community Health Center Association, and Mr. Chris Roby, Terrence Shirley, and some of
the other staff there were involved in creating various cadre of community health workers with
sub-specializations. And by the time they ended up doing that in collaboration with the Mississippi
Department of Health, now they've been able to develop a strong cadre of these community
health workers that are not now being able to be reimbursed officially for the work that they do.
And I think this is a great practice that, to a large extent, especially in areas where we have
health professional shortage areas, that can be imbibed so that we can continue to spread
the word and also reach communities that are not easily reached in this response. Thank you.
>> Marlene McNeese: Thank you. Excellent way to close out our PACHA to the People. Thank you,
everyone, for your engagement. And really, for those of you who made comment for our records,
we do take these notes and take them very seriously in our deliberations
of the priorities that we will push on our strategic agenda. So, thank you. And also,
if you can help me give a round of applause to my OIDP mighty,
mighty support team. We cannot make this happen -- yes, now a round of applause for me. Thank you.
[laughter]
And my co-captain this afternoon, Marvell Terry II. All right. Thank you. We will
adjourn and return for the rest of our official agenda right at -- it looks like it's 2:00,
yes -- right at 2:00 p.m. So, we will adjourn. Thank you.
>> Female Speaker: I think it's 2:30 p.m.
>> Marlene McNeese: 2:30 p.m.. Sorry, 2:30 p.m. They're looking at me, panicking. 2:30 p.m.
>> Female Speaker: And we're also doing subcommittee working lunches, right?
>> Marlene McNeese: Well, we are going to give instructions for PACHA members,
so please don't leave. Just wanted to conclude this PACHA to the People session, allow folks
to log off, and we'll give instructions to PACHA members about where we're going next. Thank you.
