82nd Presidential Advisory Council on HIV/AIDS (PACHA) Full Council Meeting | August 29, 2024 | Pt 2

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Sep 7, 2024
82nd Presidential Advisory Council on HIV/AIDS (PACHA) Full Council Meeting | August 29, 2024| Part 2
• Affordable Care Act Risk Adjustment Model and Potential Solutions for Expanding Access & Implementation of PrEP presentation and public comment
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>> Guillermo Chacón: Thank you, everyone. What a wonderful second day in the session that we
just closed, obviously. We'll bring several follow up in the discussion,
not only wait until next batch, but I'm sure that during USCHA -- and don't forget to mark
the calendar. Deondre invited us to that important meeting on Friday morning, if I'm not mistaken.
Fantastic. We're going to start the second part after the break, of a very important presentation.
I describe it as the other wheel, a wheel to help us to move the vehicle of ending the HIV epidemic.
We're very, very -- as Ending the HIV Epidemic subcommittee, Tory, co-facilitator -- co-chair
by Tori Cooper and yours truly, we are very proud as a committee to present this important
presentation focused on the Affordable Care Act Risk Adjustment Model. And we truly believe that
will produce some potential solutions to move in expanding access and implementation to PrEP.
We have a description and the bio of our next speaker. I'd like to just take this moment to
introduce Dr. Nelson. He's an associate dean for Global Affairs and a Planetary
Health Independence Foundation professor at Yale School of Nursing. And we are so proud
to have you and to open this space at this 82nd PACHA meeting to get your presentation
that will also help us to, again, identify key issues to remove any barriers to truly,
truly increase accessibility to PrEP. The floor is yours, Dr. Nelson.
>> LaRon Nelson: Thank you, Guillermo. I appreciate the introduction. It is an honor
to be here with you today, both as a nurse and as a scientist working to help end the
HIV epidemic in the United States. Thank you, Guillermo. Did you hear the first part of that?
>> Caroline Piselli: No.
>> LaRon Nelson: Okay. All right. Great. Okay. It's an honor, again,
to be here with you today as a nurse and as a scientist working to help in the HIV
epidemic in the United States. I am joined by two colleagues, Dr. Jirair Ratevosian and
Dr. Caroline Piselli, who I'll invite to introduce themselves right now. Caroline.
>> Caroline Piselli: I'm Caroline Piselli, and I'm also very honored to be here. I'm a Global Value
Based Care Healthcare consultant, as well as have many other roles that I've had previously. But I
think the most important is now to work with LaRon and the team on the whole PrEP implementation.
>> Jirair Ratevosian: Hi, everybody. I'm Jirair Ratevosian, associate research scientist at Yale
University, coming to you today from Atlanta, and good to be with you all. Thank you.
>> LaRon Nelson: Thank you both. Next slide.
Okay. Today, our comments to you will cover four points. First, to reinforce that PrEP is a key
strategy for accomplishing our nation's goal of ending the HV epidemic; that HPTN 096 is a study,
testing the strategy to increase PrEP prescribing practices among healthcare
providers and to increase PrEP use among Black men who have sex with men in the South,
a group and region of the country that are both overrepresented at the number of new HIV
infections; that the lack of health insurance or insufficient insurance coverages are major
structural impediments to PrEP uptake in the United States, including among Black MSM; and that
the Affordable Care Act Risk Adjustment offers a policy solution that can incentivize the insurance
marketplace to enroll more people into their plans who will benefit from PrEP. Next slide.
There are many barriers to PrEP access in the United States. We know many of these.
There's limited awareness among clinicians and the general public about what it is,
the various available options for PrEP, or the various strategies for how it can be used,
such as on-demand PrEP use. Clinicians are also hesitant to prescribe PrEP due to various
concerns, including whether they're qualified to medically manage PrEP -- manage patients on PrEP
or prescribing PrEP somehow expresses their approval of behaviors that they don't like.
Stigma against sex, sexual diversity and HIV are still very powerful social forces that
can thwart people's willingness to seek PrEP medication and services. And then the costs
associated with PrEP care are still a main barrier to people being able to access it.
This is due to high out-of-pocket expenses, insufficient financial assistance programs,
and in many cases, lack of insurance. So, addressing these key barriers are crucial
to increasing PrEP use and reducing new HIV infections in the United States. Next slide.
So, this chart shows number of new infections among MSM in the U.S. over roughly an 11-year
period. The purple line represents the number of new HIV infections in Black MSM, and the yellow
line represents the number of new infections among White MSM. You will see that around the time that
oral PrEP was approved by the FDA, the number of new infections among White MSM began to drop and
has continued to decrease dramatically. It even appears to be approaching zero.
However, for Black men who have sex with men, that number has remained relatively stable,
decreasing at an average rate of less than 2 percent a year. In fact, it is now only
beginning to reach the levels where White men were -- White MSM were 14 years ago. In fact,
the racial gap in HIV infections among MSM has widened, not narrowed. This is
not because the medications for PrEP respond differently to Black MSM compared to White MSM,
but it is because the systems, structures, and social processes that affect PrEP access and
adherence respond differently to Black people, and especially to Black LGBTQ people. Next slide.
So, HPTN 096: Building Equity Through Advocacy is a research trial supported by
the National Institutes of Health, principally through funding for the National Institute of
Allergy and Infectious Diseases. This is the trial of an HIV status-neutral, multi-level,
integrated strategy that operates at the community level, healthcare system level,
and individual level, that we hypothesize will alter the ways in which systems, structures,
and social processes respond to Black MSM. And that these -- this altered response will lead to
more Black MSM getting into the healthcare system, a system that wants them there,
and that those living with HIV will get into treatment, retained, and virally suppressed,
and those without HIV will receive preexposure prophylaxis. Next slide.
PrEP is one of the biomedical tools at the core of the HPTN 096 HIV status-neutral integrated
strategy. The integrated interventions in this strategy are designed to act synergistically
to improve the uptake of PrEP. But I'll tell you -- that's how we got here -- as we began
the work in local communities to prepare for the launch of this trial, we learned that the
policies and practices of healthcare payers, insurance companies, that those practices and
policies that were limiting PrEP access also had the potential to be altered and altered in ways
that could expand insurance coverage and access to PrEP if we pull the right levers. Next slide.
So, one of those Levers is ACA Risk Adjustment. This program is managed by the Center for
Medicaid -- Medicare and Medicaid Services' Center for Consumer Information and Insurance
Oversight. ACA is a great tool. It reduces the incentive for insurers to attract only healthy
enrollees. These are people considered low financial risk, presumably because they will
use less of their health insurance benefits. ACA does -- Risk Adjustment -- does this by
redistributing those financial risk across different health insurers in the market.
Reducing financial risk to insurers helps to stabilize premiums, and by
reducing financial risk, helps to ensure that companies are competing on quality and cost,
not on the health status of their potential enrollees. And finally, it encourages insurers
to enroll individuals who are perceived to be high-benefit users, including individuals who
will want to use PrEP as a strategy to prevent HIV. So, in summary, risk adjustment under ACA
is a critical program that promotes equitable access to healthcare by discouraging insurers
from avoiding high-risk enrollees and stabilizing premiums in competitive markets. Next slide.
Caroline is muted. She'll start just in a moment.
>> Caroline Piselli: Apologies. At this point, I really just wanted to
talk about some of the unmet goals of PrEP as it relates to ACA. So, in terms of ACA,
what we wanted to do is make sure that you have access for all, you spread the financial risk,
and then stabilize the market. And what I'll do in -- is to just talk through what some
of those baseline processes are, as well as the potential solutions. Next slide.
This is an overview, oversimplified, for sure, in terms of the ACA Risk Adjustment payment model.
So, on the provider side, they are the ability to code the ICD-10 codes. But the important
part here is that PrEP is a preventive measure versus a diagnosis or an active measure. So,
as you can see, is that PrEP cannot follow through into the ACA health risk adjustment process. So,
once it starts -- so, insurers may take on the PrEP risk and deliver PrEP, but within
this system, cannot be justified, cannot show what they delivered for that care. Next slide.
One of the potential future solutions that we've talked about with some experts -- and
we're certainly not CMS type of experts -- is that since PrEP cannot be coded on the provider side,
that we reconsider including an RxC for PrEP. And what that would do is that would allow it
to follow through this entire process, which in turn, would provide scores, as well as include
the insurers in that actuarial risk so that they can be compensated properly. Next slide.
So, in terms of the ACA Risk Adjustment for PrEP and the NHAS goals. It's promoting very
comprehensive coverage so that we can ensure that the PrEP and the additional services
are delivered, reduce the discrimination that continues, once we've seen some of those results,
and emphasize preventive healthcare. Reducing the HIV transmission rates are paramount,
and that's what this is all about doing and easing the healthcare
resources and that strain associated with the PrEP coverage. Next slide.
>> Jirair Ratevosian: Thanks so much, Caroline. And for here, I'll just try to bring
it home for everybody. You know, I think this administration has taken unprecedented steps in
committing towards PrEP expansion, right? Whether it's through the National HIV/AIDS Strategy,
EHE implementation, the amount of resources that
have been either already appropriated or proposed by the President's budget.
We see that adequate PrEP inclusion in ACA Risk Adjustment is actually seen as
central to every single one of these goals and every single one of these things that
this administration has done that PACHA has supported. So, really the timing is now. ACA
Risk Adjustment is a revenue-neutral policy fix that can incentivize PrEP utilization,
and it can advance all of the goals that are part of the National HIV/AIDS Strategy
and health equity goals that we all, you know, want to achieve. Next slide, please.
We have also been very pleased to see the growing support for adequate PrEP in risk adjustment
after several years of public comments that we've seen from manufacturers as well as from insurers,
really, over the last six to eight years. And these usually take place around November time
when the NBPP rule is out for public commenting. But after several years of public commenting,
we're now seeing for the first time, HIV providers, healthcare organizations,
HIV organizations, civil rights organizations, on board to endorse for adequate PrEP inclusion
and risk adjustment. We were pleased to see over 45 national organizations sign
on to a letter calling for CMS to make this policy shift. Next slide.
And so, we want to leave PACHA with some ideas. And we've already had some good discussions with
the subcommittee around what can PACHA do. And you know, we think really there's three easy
steps. We want PACHA to consider adopting PrEP inclusion and risk adjustment as an important
policy imperative. We want PACHA to join the 45 national organizations that have signed
on to encourage CMS to fix this through the Notice of Benefit and Payment Parameters rule.
We understand that that rule right now is undergoing interagency pass back,
and we'll see it become public -- for public commenting sometime in late fall. And we ask
PACHA to track this as it goes through the process and to monitor the progress and continue to give
it feedback. We believe that by taking these strategic steps, we can actually truly overcome
some of the major, major barriers that we've seen in terms of PrEP access over the last
10 years and expand coverage through the ACA Risk Adjustment mechanism. So, I think that's
our last slide. And we're very, very happy to answer questions. Thank you for the time today.
>> LaRon Nelson: Thank you.
>> Guillermo Chacón: Thank you, the three of you. Apologies. I only received one name, this section,
but you know the three of you are obviously much better. Our love to this presentation. And maybe
you can bring us back as a full participation that we can open up for Q&A. Hold on, because I'm not
able to see every -- oh, right there. Thank you so much, Control. Again, on behalf of the Ending
the HIV Epidemic subcommittee but, you know, the entire PACHA, we're grateful for the three of you.
Let's open up for questions, and let's try to ask direct questions. And our panelists
will entertain for a few minutes, Q&A. The floor is open. Caroline -- Carol. Sorry.
>> Carole Treston: All right. Thank you. Thank you for this presentation and for this work,
which really, you know, this 10-minute presentation, 15-minute,
really is a culmination of a lot of work. And I was privileged to be part of the original
subcommittee that heard this presentation in much more detail. So, I'm going to ask
some questions that I asked then. Because I want the whole group to hear them, right?
But I do -- before -- I want to use that term “lever.” Like there's lots of things that we
can all do to advance ending the HIV epidemic. We just heard -- I'm sorry you guys did -- you folks
missed it -- we just heard a great hour and a half on U=U and how we need to get behind and
really expand the U=U message. And there's many levers and having PrEP access be -- you know,
it's an and not an or, right -- having PrEP access more accessible.
You know, I -- we -- I know of a young man who was an HIV advocate, actually directed a PrEP program
at one of the organizations and had some insurance problems as he moved from another state and became
HIV positive during that. He was on PrEP, lost his insurance -- he had some insurance issues
and was struggling with getting authorization and became HIV positive during that struggle.
So, this is real. This is real. And every little bit that we can do to open up some
of those restrictions is important. So, ANAC was one of the organizations that signed on to the
letter and -- but I do have the question that helps people understand more. The challenge is,
this is a preventative measure, and this pathway is typically for treatment. Are
there other preventative measures such as immunizations or other prevention treatments
that also have -- that are eligible for this risk adjustment category?
>> LaRon Nelson: Thank you, Carole. And thank you for the support of ANAC
signing on. We appreciate it. So, right now, as Caroline presented,
that is not part -- preventive measures are not part of the ACA Risk Adjustment model. None of
those things are included. It's only for things that are diagnosed. And so, preventive treatments
are not -- preventive techniques are not diagnoses. So, the answer to that is no.
We did have a chance to meet with CMS CCIIO. That is the division who -- that is responsible for ACA
to make our case for why -- even though their policy does not include preventative measures,
that this is different, that this -- the cost of PrEP is not evenly
distributed across the insurance market the way flu shots might be. Everybody,
presumably, in an insurance program, should be getting a flu shot. So,
those risks aren't born, more or less, by any particular insurance program.
That's not the same for PrEP. It's not for everybody. And so, insurers make -- may make
decisions about who they enroll, based on who might be eligible for PrEP. And so,
those costs might be -- maybe not concentrated, but certainly not evenly distributed. So,
we made the case that this is expensive for providers. And the reason why they introduced
risk adjustment was to ensure that insurers did not take strategies to minimize their
financial risk by not including --enrolling people who might be high-benefit users.
We made a case that this is exactly what's happening in the case of PrEP,
that PrEP is different from all the other things. Also, because PrEP is responding -- is a tool
to help us respond to an active epidemic that's happening right now in the U.S.,
that we could -- that is -- we could slow down, if not stop, that this is something that we levered
as not unleashing, that they could have a role in doing that if they allow PrEP to be a part of it.
They seemed receptive. Jirair was -- and Caroline were -- they might know
better about it. But they -- I think the comment was that it seemed reasonable,
the argument that we made. But it is an admission that they don't do this for anything else.
So, we acknowledge that but also make the case why they should do it for this. And we
hope that that'll make traction and that you can help us help it make traction.
>> Caroline Piselli: And maybe just one additional point is we've looked at the data and research
and articles and all that kind of thing, but we spoke to a number of the payers and the providers.
And I think the biggest takeaway is that they might have patients right there ready for PrEP,
and they can't administer them because of these roadblocks that occur, so that those insurers
that are doing the best they can to implement and provide access to as much PrEP as possible,
what happens to -- what ends up happening is, financially, they're hurt. Because those costs are
spread across their entire market. So, those who have healthy, really great patients are enrollees
versus those who may choose to take care of the PrEP population or PrEP access and implementation
do not have financial incentives built in and, in fact, could be hurt financially for doing this.
>> Guillermo Chacón: Thank you, Caroline. Carole, thank you so much. Any other questions,
dear PACHA members? And by the way, the three recommendations,
we will do a deliberation when we are just meeting as a PACHA body. It will not be
debated in this space. Just, you know, in case you want to ask questions regarding that.
But I just want to echo what Carole just asked or mentioned in her remarks, the Ending the HIV,
this -- had the opportunity to hear this presentation with more details. And truly,
we really want to bring it to the entire PACHA, but it's a major barrier. And we don't incentivize
-- one slide that I want to remind to all of you is, unfortunately, two of the populations most
impacted, Black and Latino, Latina or Latine, are crucial for us to increase people accessing PrEP.
We truly believe those structural barriers will allow more payers to be incentivized to add it and
put a part of the adjustment model and be able to incentivize more people to understand that PrEP
is an amazing new development, a tremendous tool that will overall enhance the ending
the HIV epidemic, as one of the presenters outlined. Any other questions? Oh, Jesse.
>> Marlene McNeese: Jesse, if you could just pause, I just wanted to say a quick
comment to Dr. Nelson for bringing this to PACHA's attention so urgently. Because you
reached out, we were able to have that conversation in subcommittee, and again
to Caroline and Jirair for joining him today and really pushing this issue again. We're
at a crucial place in our country around uptake and access and the idea that we
see real challenges here with implementing that across clinical spaces and settings.
I just thought it was so timely. And it's that way in which we can move the needle in this country,
is by folks that are on the ground, implementing the work, reaching out,
and informing, you know, our federal colleagues and including some of us,
advocates and workers in the field around this council table is really critical and
really important. So, I just have to say thank you. Thank you for lifting this up and for,
you know, having a clarion call for this issue. Thank you. Go ahead. Sorry, Jesse [laughs].
>> Jesse Milan: Oh, no, thank you, Marlene. The chair always has the privilege to help explain
what we're doing. I think my question is, since the medication that is used for PrEP is already
a medication that's within -- I believe, for treatment -- within the risk assessment,
this is a -- this is not a big exception. It's like the drug is already approved for
one thing. It's not a big deal to approve it for one more thing that could actually save lives.
So -- and I don't know that there are any other drugs that are similarly situated,
other than the drug you -- that is PrEP. That's also already recognized by CMS,
under risk assessment for ACA, for treatment. So, maybe it's a unique exception in the entire
world. But I just want your thoughts and your feedback on, is that the case?
>> LaRon Nelson: Caroline, do you want to take that?
>> Caroline Piselli: Oh, sure. So, yeah, I would say yes and no. There's a lot of variances,
particularly since what we presented in 10 minutes probably could take 10 hours in another,
you know, forum. But in terms of, I think, what's happening or what I did -- because
some of my previous work was with CMS on other things -- is it strictly needs to
follow the ACA process to be included. And the very first piece is based on a diagnosis which
is in the ICD-10 system. And then that's mapped to the payer system. And then it
goes through all of the risk adjustment and other kinds of cohorts within that.
But in the absence of that first step, having the code to be able to bring into the whole payer ACA
process, it can't happen. It's just not possible. I think that's really the issue. And that's why,
on our slide, I glossed over it. We're asking for an RxC. Because that piece of information
can directly address PrEP and then enable it to go through that process. I don't know
if I explained it well enough. But I was trying to make something complex, simple.
>> Guillermo Chacón: Yes. No, thank you, Caroline. Leo, and then we're
going to close it up unfortunately. Because we're running out of time.
>> Jirair Ratevosian: Guillermo, can I just add one -- I just wanted to add one more.
>> Guillermo Chacón: Oh, go ahead, Jirair.
>> Jirair Ratevosian: Well, before Leo. Leo, give me a second, will you? I just also wanted to add
just context. CMS has acknowledged exactly what Jesse has said in their response to
public comments. So, I think what Jesse is highlighting is important. They've actually
acknowledged it as a complication, Jesse, in their response to public comments. And
they've pleaded with the public to help them figure out how to solve it. And over time,
since 2016, when they first received public comments about this from insurers and from
manufacturers -- but that's changed a lot because the menu of options for PrEP have now expanded.
We talked to them this week about the promise of long acting. And all that's changing in the
future. And now, they're feeling the urgency to want to figure out how to actually make
an exception. They've asked us for some modeling. They've asked us for some cost estimates. And so,
these are all good signals. And I think the public pressure that advocates have created,
that providers have created, that Dr. Nelson has created,
that PACHA is helping to create, is being heard loud and clear.
>> Guillermo Chacón: Excellent. Leo.
>> Leo Moore: Thank you. Thank you for raising this issue. One question I had
is regarding diagnosis codes that we're already using for PrEP. So,
one that we use pretty often is high-risk sexual behavior. I don't think it's the best, you know,
wording, of course, for that diagnosis code, but it is a diagnosis code that
we're currently using. So, has there been any conversation about those diagnosis
codes that are existing that we're using to prescribe PrEP regularly for this process?
>> Caroline Piselli: So, I think that's a really great point. Because there's the whole thing
about risky behavior, and there's other kind of descriptors that are below that. I know exactly
which menu. I can almost picture it while you're talking. But those are a little bit different. So,
they don't necessarily fit their criteria as the entrance into the system. So, yes,
they're within the ICD-10 system and diagnosis and so on and so forth, but they can't be
mapped into the payer system that -- the risk adjustment system that we're talking about.
>> Leo Moore: That's helpful. Thank you.
>> Caroline Piselli: Great point. Yes, and I want to reiterate what Jirair
was saying is -- in discussion with CMS. They're very open. They're acknowledging
this. And they're really taking that information to work together with us.
>> Guillermo Chacón: Yes. And I want to echo that, that across the board,
our federal partners are truly committed. And on behalf of PACHA, we applaud, you know, the CMS to
be engaged. And we want to also recognize your amazing work. Because, again, I really want to
recognize that this is a very short, compressed presentation, but it's urgent, important, and
the timing is everything. Let me ask for a round of applause to our speakers. And we will -- our
commitment is to continue working on this important issue. Thank you. Thank you so much.
>> LaRon Nelson: Thank you.
>> Guillermo Chacón: Back to you, Madam Chair.
>> Marlene McNeese: I can't come off mute here. Thank you again, Guillermo,
and again to the presenters for bringing this, again, very critical issue for us to consider
and help push some advocacy for. We will move on in our agenda. Thank you to all of the members
who are being flexible with our schedule today. I think every conversation was absolutely necessary.
And so, bear with us as we go through the remainder of the afternoon.
We will move now into public comment. I will turn it over to our Executive Director,
Caroline Talev, who will facilitate our public comment period. Thank you, Caroline.
>> Caroline Talev: Thank you, Marlene. For public comment, we have three minutes to
make a statement. Damon will have a timer on the screen. And if you didn't register for
public comment and would like to submit one, please email it to PACHA email by next week,
by September 5th. Joseph. Terri Wilder, HIV/aging policy advocate at SAGE.
>> Terri Wilder: Hi. I'm here. Good afternoon. I'm Terri Wilder
and work on HIV and Aging Policy at SAGE. For those who don't know,
SAGE is the largest and oldest organization dedicated to improving the lives of LGBTQ+
older people and those aging with HIV. We were founded in 1978, and we're based in New
York City. And we provide crucial services and resources to folks across the nation.
Recently, there's been a growing focus on the care and prevention needs of
older people living with or vulnerable to HIV through a policy lens. An example of this is
NASTAD and the Georgetown O'Neill Institute convened stakeholders nationwide to discuss
these issues. The Center for HIV Law and Policy also released a primer on the legal
challenges faced by aging individuals with HIV. Additionally, a group of us organized
a full-day HIV and aging preconference at the International Conference on AIDS in Munich.
An issue recognized in the Georgetown O'Neill Institute report, which highlights one essential
policy priorities, is the significant stigma and discrimination faced by our community members in
long-term care settings. A study found that 43 percent of older LGBTQ+ adults reported
mistreatment, including verbal and physical abuse, denial of admission or readmission,
and other forms of discrimination. Those aging with HIV encountered similar challenges.
An example of this is from a story featured in POZ Magazine a few years ago, detailing a
family's struggle to secure long-term care for their father, who was living with HIV. Despite
their efforts, the father was repeatedly denied admission to local long-term care facilities.
And although he was eventually accepted, the story highlights the harsh reality of HIV-related stigma
and how our community is frequently denied the care they deserve for simply living with HIV.
More recently, an assisted living facility in a Midwestern state had a resident living with
HIV in which the staff refused to touch. Given that caregiving often requires physical touch,
the situation reflects that such discriminatory practices
are not relics of the past but are an ongoing challenge. As our community continues to age,
these issues are likely to persist and potentially worsen, if not addressed.
To address these challenges, it's crucial to advocate for LGBTQ+ and HIV long-term care
bill of rights at both the state local and federal level. States like California, New Jersey, Oregon,
and New York, along with cities like San Francisco and Montgomery County and Maryland, have passed
such bills. Efforts are going on in Minnesota, and discussions are starting in other states.
I'll end by saying, I urge PACHA to begin or continue discussions on the long-term care needs
of people living with HIV and explore solutions, including bill of rights, to ensure that none of
our community members experience discrimination in long-term care facilities that the stories
I've shared highlight. Our community deserves care with dignity and respect, and it's our
responsibility to ensure these protections are comprehensive and effective. Thank you.
>> Caroline Talev: Thank you. Rik Kutcher from the -- HIV/aging advocate
and long-term survivor from Rainbow Health.
>> Rik Kutcher: Good afternoon. I'm Rick Kutcher. As an HIV and aging services advocate based in
Minneapolis and a long-term survivor of HIV for nearly four decades, I am dedicated to meeting
the continuing needs of the HIV and aging community. Additionally, my involvement with
NMAC's 50+ HIV Strong & Healthy cohort further underscores my commitment to those I serve.
I am grateful to be alive and for the opportunity to participate today,
contributing to the discussion and development of policy recommendations designed to improve
the health and well-being of older adults living with HIV, especially those I've
had the privilege of supporting in my state. The HIV community in Minnesota is currently
facing substantial challenges following the sudden closure of Rainbow Health,
the state's largest HIV/AIDS organization for 42 years and where I was formally employed.
The agency abruptly closed its doors last month because of financial insolvency,
leading to the loss of my job and that of 80 former colleagues, but most importantly,
while also disrupting essential services for the thousands of clients we served.
This follows an earlier closure of the African American AIDS Task Force,
further creating significant gaps in essential services. Now, I fear this
situation may worsen with the impending state funding reductions of approximately $9 million,
30 percent more than last year, coupled with a 24 percent rise in new HIV diagnosis compared
to last year. That is the highest increase in over a decade in our state. Currently,
another local agency is trying to manage services within their capacity, but they
can't do it alone. Therefore, we must focus on addressing the gaps created by these closures,
particularly regarding the support and services uniquely designed for our HIV and aging community.
While at Rainbow Health, I partnered with community members, local, and national
organizations to create a comprehensive plan for addressing the needs of our HIV and aging
population. These initiatives were focused on tackling health disparities, eliminating both
actual and perceived discrimination, reducing social isolation and stigma,
and improving the overall quality of life for our HIV and aging community. With the
majority of HIV positive individuals now over 50, immediate action is crucial.
This appeal underlines the urgent need to address the concerns of older adults living with HIV,
stressing the importance of increased statewide funding and support. It
also highlights the necessity for an extensive community-focused state plan
aimed at supporting the aging population impacted by HIV. In 1986, if someone had
told me I'd be discussing life and aging with HIV, I would have found it hard to believe. So,
I thank you for your time, attention, and continued support for the HIV and aging
community. And I suspect I may see some of you at USCHA in just a few weeks. Thank you.
>> Caroline Talev: I thank you so much. I'll try again for Joseph Amrhein. With that,
this concludes the public comment. Chair McNeese, back to you.
>> Marlene McNeese: Okay. Well, I really have to say thank you to Rik and to Terri
for signing up and providing your comments for us to officially consider and have on the record,
the idea that we at PACHA also consider those individuals with needs who are
aging with HIV equally as important and critical for our prioritization.
And appreciate you lifting up some of those issues for us to consider.
I will pivot now on the agenda. We are scheduled to have a break, but I don't think anyone will
oppose if we go right into PACHA-to-the-People, the community engagement session, which is what is
most critical to the work that we do, even when we have virtual space. So, I will look toward
Caroline and Damon to direct us to make sure. But there is a separate registration and link for the
Pacha-to-the-People session. So, we should all log in over there. Is that correct, Caroline?
>> Caroline Talev: You've got it. Actually, I put it in the chat box for those viewing online. You
should have a link or a QR code that you could scan. Damon was kind enough to register all of
our PACHA members. So, you should have it. But it was so long ago that it might be easier just to
re-register. So, if everyone can just jump off and jump right back on, and we'll see you in a minute.
>> Marlene McNeese: All right. See you. Thank you.
>> Caroline Talev: Thank you.
