Alzheimer's Disease and Dementia Advisory Council
Video
Transcript
5 documents
Bills discussed (3)
| Bill | Title | Sponsor | Status |
|---|---|---|---|
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HB1164
· 1 mention in transcript
Matched: “to this issue. We also filed legislation, House Bill 1164,”
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TO ALLOW A PHYSICIAN OR HEALTHCARE PROVIDER TO OFFER COGNITIVE ASSESSMENTS FOR CERTAIN PATIENTS; AND … | J. Mayberry | Died in Senate Committee at Sine Die adjournment. |
|
HB1523
Act 951
· 1 mention in transcript
Matched: “…uced legislation that passed from Representative DeAnvault. House Bill 1523 became Act 951. It made some changes to”
|
CONCERNING MISSING PERSONS ALERTS; TO CODIFY THE ARKANSAS AMBER ALERT SYSTEM; TO CODIFY THE ARKANSAS … | Vaught | Notification that HB1523 is now Act 951 |
|
HB1592
· 1 mention in transcript
Matched: “…did introduce several pieces of legislation. We introduced House Bill 1592 that was consistent with our section of the state plan that…”
|
TO CREATE THE ARKANSAS ALZHEIMER'S AND DEMENTIA PUBLIC HEALTH ACT. | J. Mayberry | Died in House Committee at Sine Die adjournment. |
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- October 6, 2026
Representative Julie Mayberry
Unverified
0:00
We're so excited to be back with the Alzheimer's Disease and Dementia Advisory Council. I'm State Rep. Julie Mayberry, and this is my last time being here as chair. Representative Les Warren has been appointed by our House Speaker to bring us into this new, well, next legislative session, I guess I should say, because I won't be here. This is going to be my last term in office, and I'm excited about Les Warren being here.
We're going to actually start it off by just kind of reintroducing everybody who's here. This is all new to Les Warren, and so that way he can put a face to some of the names.
And I'm going to start it off by letting Senator Penzo say a few words of why you're
Senator Clint Penzo
Unverified
0:53
here and what we look forward
to. Yeah, well, I'm Senator Clint Penzo from Springdale. I represent District 31. My father had dementia, so this is a very important committee to me.
And I appreciate all the people that are members of the committee and all the work they're doing to help patients out in this arena. So, and was going to finish with it, but I just want to thank Julie for all the years of service. She's got a real passion for children, elderly, disabled communities. So, that's something that's very important to me, and I appreciate your leadership in this committee and other things, and you're going to be missed.
Representative Les Warren
Unverified
1:44
Thank you. We'll let you. I'm Representative Les Warren from Hot Springs. I had my mother with Alzheimer's for eight years. I moved her to Hot Springs and saw all the different phases of Alzheimer's. And not so pretty, but it gave me a real appreciation, not only for those who have the disease, but also for families and
caregivers, and I want to do everything I can to hopefully put an end to Alzheimer's one day. It seems to be affecting more and more people, so glad to
Representative Denise Jones Ennett
Unverified
2:30
be here. Stephanie Cook, I'm the Executive Director at Alzheimer's Arkansas, and we provide free resources
Speaker 14
2:36
to family caregivers across the state. Personally, my mom just participated in one of the newer blood tests for biomarkers for the tall protein. We got her results. She has Alzheimer's.
Her mother lived with Alzheimer's and my great-granddad, and so it runs deep in my family, and I'm doing all I can
Speaker 15
2:56
for my switch not to turn on, so I'm glad to
Speaker 17
3:04
be here. I'm Jodi Ann Tritt. I'm the executive vice president of the Arkansas Hospital Association, And like everyone else here, I also have a personal story. My grandmother definitely had dementia, and we all suffered through those phases, the sweet ones and the ones that were not so easy to handle on the way out.
But I'm glad to be here, glad to provide open, honest dialogue about difficulties within the hospital space and clinical trials and those kinds of things, and
Speaker 16
3:34
also stand ready to work with you all to try to come up with constructive solutions that make sense
Speaker 19
3:45
for patients. I'm Amy Lee Overton-McCoy, and this is personal and professional for myself, as I have also lost a parent with dementia.
And professionally, I'm the director of the UMS Centers on Aging, And we have a center representing every county in the state of Arkansas, your master tobacco settlement funds at work, as we are there to advocate not only for the community, but for health care professional students and health care professionals in ensuring that everybody, even in the rural areas, are receiving the best practices across the board.
Speaker 22
4:25
I'm Tony Baylor. I'm the branch manager for chronic disease at the Arkansas Department of Health, so I'm their representative. Of course, Alzheimer does touch my family as well, and I'm really
Speaker 24
4:34
interested, well, continue to be interested in what this panel has to discuss. We have members
Representative Julie Mayberry
Unverified
4:46
of the House and Senate who have joined us, and I love when they show
up to these meetings, and I definitely want people to know that you're here, so please introduce yourself
and a little bit of why this issue is important to you as
Representative Jessie McGruder
Unverified
5:04
we continue to go around. Good afternoon, everyone. Thank you, Madam Chair. My name is Jesse Magruder. I'm the state representative from District 35, Crittenden County. I'm here because I lost an aunt to Alzheimer's and an uncle to dementia, So I think it's important being in this position that we understand all aspects of everything that happens and that's why I'm here today.
Senator Fredrick J. Love
Unverified
5:29
- Good afternoon, everyone. Senator Fred Love, District 15 here
in Little Rock. I had a grandfather who suffered with Alzheimer's. - Good afternoon.
Representative Denise Jones Ennett
Unverified
5:43
I'm State Representative Denise Ennett, District 80. I'm here to learn. Thank you. David Cook, the Director
David Cook
Unverified
5:52
of Government Affairs for the Alzheimer's Association. We cover all 75 counties, offer care and support services to all the families who are impacted.
In addition to my professional capacity, I also feel this disease personally. I lost my grandmother to Alzheimer's disease in the 90s, and my dad is currently living with
frontal temporal dementia. Thank you and this committee for all you guys are
Brad Hall
Unverified
6:20
doing and all your support. Thank you, good afternoon. My name is Brad Hall, State Representative District 24. And I've
Representative Brad Hall
Unverified
6:26
also lost family members to this disease. And it will affect everybody at some point in their time in your life.
And I have a constituent in my district that has just recently lost his wife to this at an early age. And he really wants to maybe try to pass some kind of legislation maybe coming up in the next session. And so I'd be willing to work with you all, you know, getting some of y'all knowledge about what we might be able to do for folks and families that are dealing with this issue. Thank you. Good
Representative Joy Springer
Unverified
6:58
afternoon, and thank you, Madam Chair. Greetings to all of you that are here today. I've been in this committee before.
I'm not a member. However, I did have a parent, my mother, who suffered with Alzheimer's for 16 years, and I was her caregiver during that entire time. So this is near and dear to my heart. Thank you.
Brad Nye
Unverified
7:21
- Good afternoon. My name is Brad Nye, I'm the Deputy Chief of Staff for the Arkansas Department of Human Services, our Medicaid state agency. I'm actually filling in for Jay Hill today who couldn't be here.
Jay is the director over all of our aging programs at the department and really is a subject matter expert for us. Very excited for him to be here in committee hope to be here as often
Speaker 44
7:51
as I can be as well. I'm Carrie Jordan. I'm a professor of nursing at the University of Central Arkansas and I run a program out of UCA called the Interprofessional Therapeutic Activity Program where we are trying to engage health profession students to meet some
of the service needs in the community for people with dementia. I'm also an informal caregiver of a person
Speaker 45
8:16
with dementia. My mother has been living with me for eight years,
Speaker 46
8:26
and my dad also had dementia, and he passed about a year ago. Hi, my name is Jean Way. Hi, Representative Mayberry and Senator Benzo and Mr. Smith. I'm
Speaker 49
8:38
grateful to be here. And I have a long-term history and interest, both personally and professionally, in aging.
And, of course, one of the main conditions associated with aging is cognitive impairment, in particular dementia, in particular Alzheimer's. So it's a major interest of many of us who are here and who are also in the Institute on Aging at UAMS. Good afternoon. I'm
Speaker 51
9:10
Gohar Esher. I'm a physician scientist. I work at UAMS in the Department of Geriatrics with Dr. Jean Wei.
I'm director of the memory clinic over there. And personally, my mother had dementia. I was her caregiver, and my sisters have been her caregiver for a very, very long time. So personally affected with that. And I see patients as young as in their 40s with this disease in the clinic every single day. We are successfully treating now with monoclonal antibodies. One, lecanumab, and the second one is soon to be approved at UMS, donanumab.
We are very, very successful, and our patients are very grateful. Most of them are doing well. So I'm excited to be part of this committee because we are making inroads in this terrible disease. Thank you so much for those
Representative Julie Mayberry
Unverified
10:08
introductions. I see some other members have not joined us at the table, but they're here in the room, and I just want to acknowledge their presence because we appreciate you all being here. Representative Keith Brooks, Jeff Wardlaw, and Aaron Pilkington, thank you also for being in attendance.
The more eyes and ears we have on the subject matter is greatly appreciated, so thank you. I also want to acknowledge that we can't do our job without our staff, and we have Jessica Beal, one of our staff attorneys. Amazing all that she knows and how quickly she can put stuff together. I'm always amazed at her efforts. Constant Volts is new. Say hello, Constance, and also Katie Hickam. Thank you so much, both of you. And Brandon, do you want to say anything?
No, Brandon Smith kind of holds us together. If I don't respond or Clint doesn't respond in some way, he keeps messaging us, you know. Hey, we got to do this. We got to do this. So they keep us in line. So we really appreciate all their help and their work. Okay,
the very first thing that we need to do is consider the adoption of our Alzheimer's Disease and Dementia Advisory Council rules of procedure. Is there a motion to do that? - So
moved. - So moved, is there a second? And Stephanie Cook second, thank you.
All in favor say aye. - Aye. - Anyone
opposed? Okay, thank you, motion passes. Next is the consideration to approve the minutes from September 24th. It's been almost a year since we've had a meeting. We had a little legislative session slip in there, so that took up a lot of time. Is there a consideration or a motion to approve the
minutes? Stephanie Cook, thank you. Is there a second? Thank you. And all in favor, say aye. Aye.
Anyone opposed? Thank you. Okay. The second is to consider a motion to authorize the co-chairs to approve
special expenses incurred by the Alzheimer's disease and Dementia Advisory Council. I will tell you that in the past, we've never had to make use of that. So
it is there, but we haven't used any extra funds for this committee. Is there a motion for that? So moved. Is there a second? Okay. All in favor, say aye. Aye. Anyone opposed? Okay.
So now we will move on to our 2025 annual report. Every year we have to have a report that we send on to the Speaker of the House, also on to the Senate, and also to the governor's desk. Just kind of summarizing what has taken place. And David Cook is ready to do a presentation. All of you should have a packet in your hands to go ahead and take a look at that as he walks us through it. David, it's all yours. Thank you, Madam Chair.
David Cook
Unverified
13:04
And just on the onset, I just wanted to thank you for your leadership
and Senator Penzo and for your support during the past legislative session. This group has grown since our first efforts in 2018, 2019. We met in a little room next to the Healthcare Association. And over the last seven years, it's been amazing to see just the legislative attention to this issue grow and the state make some great strides in implementing the state plan. So I really appreciate all those who have been a part of that effort, who supported our work at the association,
but also the nonprofit representatives here who have helped move this work forward in a programmatic way. And so I certainly want to acknowledge all the programmatic work that's happened to help us implement sections of this plan. I also apologize. I don't know how long my voice is going to hold out, but I did keep this brief for you guys, but also my sake as well. So what I wanted to do is start out with just the latest facts and figures. This is how we typically start these meetings.
I do want to keep you also mindful of the fact that this is our last implementation report, and the state plan is due for an update in 2026. So of all the priority recommendations that we will submit today, that is, of course, paramount. we'll need to restructure to update the Alzheimer's State Plan, which will be due a year from October 1st. So for today's time, I just want to go through some of the prevalence, the latest updates and prevalence,
then we'll do a quick recap of the legislative session, and then I'll give an overview of some of the highlights from the state plan, and then I'll close it with some priority recommendations based on what I present today. These
were released in March of this year. Of course, we know there's over 7 million Americans who are currently living
with Alzheimer's disease. If we do not get ahead of the curve, that number will look like closer to 14 million, 13.7 million by 2050.
So we are seeing prevalence continue to increase. We did this past annual report, we did a special section really trying to understand Americans' perception on some of the latest treatments. And what we found out, 92% of Americans would want a medication that could help slow the progression of Alzheimer's following a diagnosis. And so a lot of public support for the treatments.
And as Dr. Azar had mentioned, amongst other things in the scientific landscape, a lot has changed since 2022. We authorize this report. A lot has changed in the health care space. A lot has changed in Arkansas. A lot of great things have happened in research as well that's helped us move some of these things
forward. You do have the Arkansas figures in the annual report. You have the Arkansas
State Fact Sheet. I'll just draw your attention to a few highlights.
Over 60,000 Arkansans over the age of 65 are currently living with Alzheimer's disease. That number does not include those individuals who are living under the age of 65 who may be living with a younger onset diagnosis or, as you all know, dementia is kind of an umbrella term. There's many different types of dementia and that number is not included of individuals like my father who's living with a frontal temporal dementia. But 11.3% of adults over 65 are living with Alzheimer's. As you know, when someone receives a diagnosis, caregiving duties typically fall first to
the family. And in Arkansas, more than 173,000 Arkansans provided 265 million hours of unpaid care for a family member, and that's a contribution of $5.4 billion in cost savings to the state of Arkansas. more we can do to support our family caregivers. We have identified that as a committee as a priority of ours. I didn't put the Medicaid spend on the screen, but just so you know, the impact on state Medicaid, Alzheimer's, of course, is the most expensive disease to treat
and to care for, and the Medicaid impact estimate for 2025 will be close to $492 million just here
in Arkansas. I did not include the legislative recap in the annual reports, and
the reason for that is I highlighted in this last annual report that things were very specific to the
status of implementation, so we really focused on the recommendations that were included in the report. But I did want to give you a legislative summary of what happened during the 2025 legislative session. So if we could real quickly just walk through this section. We did introduce several pieces of legislation. We introduced House Bill 1592 that was consistent with our section of the state plan that dealt with public health, education, and awareness. We had conversations with the
Department of Human Services, as well as the Arkansas Department of Health. Each state agency expressed fiscal concerns. Because of that, we ultimately pulled the bill down. But we also had a very constructive meeting with the leadership of both Department of Human Services and the Health Department about further implementation in the public health section and some things that the agencies could do together in collaboration to help us move some of this work forward. So we ultimately decided to pull that down.
Access and quality of care, of course, was a really big issue we tried to work on during the session. We did have, as we've mentioned already, advancements in scientific research that gave us our first FDA-approved treatments for Alzheimer's disease. Those treatments are only effective for people in the very early stages of this disease. So early detection and diagnosis is so critical. And there's certainly some challenges around access that we have here in the state of Arkansas.
So what we looked at during the 25 session is a piece of legislation that would have required the Employee Benefits Division to authorize coverage for FDA-approved treatments for state employees. So the scope was really small. We were able to pull some claims data from Illinois and some other states to combat a very exaggerated fiscal impact number. Again, I mentioned that this is a very, very specific patient, and our estimate was maybe 10 state employees across the
board would qualify for something like this. So it was a very insignificant number of patients who actually qualify for these treatments. This legislation did advance out of the House with strong bipartisan support, but it did fail in the Senate Committee. There were some concerns about the fiscal impact, but also some concerns about us enacting legislation that would have removed some authority from the Employee Benefits Division. So that's an issue that several legislators have expressed support of us bringing back, and so that's something that we would love
to work with the Council on us rethinking our approach
to this issue. We also filed legislation, House Bill 1164,
passed with an overall majority in the House, again 72 to 10. This piece of legislation would have required all private insurers across the the state of Arkansas to implement coverage for diagnostic and screening services.
It would have also had a fiscal impact on the state because it would have required the state Medicaid department to establish a reimbursement code for a CMS code that existed. It's CMS code 9943. And under that code, Medicare beneficiaries can receive cognitive screening and care planning services during an annual wellness visit. We have been trying for the last three or four years to make that benefit available to our Medicaid population. During the course of this discussion, there was concerns, there was exaggerated fiscal impact numbers.
And so we had presented real claims data from the state of Kentucky, which I'm happy to share with you. This was just given to me last week. But over six and a half years, they've had this coverage in place in Kentucky. And over that six-and-a-half time period, they've only paid out 488 claims. And so the exaggerated fiscal impact number that we saw by comparison, it would have required us to provide Medicaid coverage for everybody in the state at least three times. And then that three-time population also qualify for this benefit.
And so it was way out of scope. And based on what we're seeing in claims data, the fiscal impact would have been minimal. So in the course of the meeting we had with the Secretary of Health and the then Secretary of Department of Human Services, there was an agreement made that they could cover this with their existing appropriation. But late in the session when we tried to run it in the Senate, concerns over the fiscal impact resurfaced, and so we
Speaker 75
22:59
ultimately decided not to run it in the Senate
Representative Julie Mayberry
Unverified
23:02
side. Can I ask a question about that? Yes, ma'am. Okay. I'm sorry. You're recognized to ask a question and make sure your microphone is on.
Speaker 43
23:11
Sorry about that. So what was involved with the cognitive screening in that? What was
Speaker 44
23:16
going to be involved? Was it just like when they go to their healthcare professional, they do like a MMSC or an easy cognitive screen? Is
David Cook
Unverified
23:25
that what was being mandated? Yeah, this would deploy cognitive assessments, a mini-cog like the SSE or the MOCA that could be done in a PCP office. So by default, you would expand access to that initial diagnostic tool. And again, it's a very inexpensive test to run.
Representative Julie Mayberry
Unverified
23:44
You may continue. We'll have a greater discussion after
all of this is presented as well. So if you want to hold your questions you can but if it's more appropriate to ask
David Cook
Unverified
23:56
at the same time that's fine too. Go ahead David. Thank you. We also filed a piece of legislation that was consistent with the quality of care recommendations that we have in the state plan. We noticed here in the state of Arkansas only home care providers so that's providers who are providing that in-home care across the state. How do you say home care? Two different ways. Well I guess that's it but
But what we did notice that only here in Arkansas, only providers who accept Medicaid in terms of payment are required to receive a license. And so if you want to take private pay, you do not have to have a license here in Arkansas. You can put a bumper sticker on your car and be in business. That concerns us for several reasons. First, the vulnerability of patients with dementia, but it was also concerning because the work that we did to establish training requirements for home care providers, that dementia training component we passed, it does not apply to providers who just take private pay.
So this legislation passed out of the Senate with 33 votes, but it did fail in the House committee. And
the health department did express concerns late in the session around how they would, some of the challenges to implement a new training requirement, or regulation, sorry. There is some additional legislation that we did support. We, and when I say we, I mean the Alzheimer's
Association, but it did impact the populations that we serve.
There was a caregiver tax credit that was introduced, but it did not advance out of the Reverend Tax Committee on the House side. But we liked that because it gave an enhanced caregiver tax credit for families who are providing care for an individual living with a dementia diagnosis. We also thought that that was very consistent with federal legislation called the caregiver tax credit that's moving through the federal legislative process. And it will create that $5,000 federal tax credit, so we'd love to see that happen here in the state.
There was also introduced legislation that passed from Representative DeAnvault. House Bill 1523 became Act 951. It made some changes to
the silver alert system. Most notably, it created the missing and endangered adults alert, And that was specific for people who are living with dementia but may not qualify. Their case may not qualify for a silver alert. So it's good to have this other alert out there for the dementia population.
And that will only go to reinforce some of the law enforcement and first responder training that we have in place. So that's very critical. And then there was some
clarifying language introduced by Representative Lee Johnson. House Bill 1169
became Act 383, and this added dementia as a qualifying condition for involuntary commitment in a hospital, especially if there's, like, a behavioral concern. Dementia
wasn't a qualifying condition, and so this kind of made that a qualifying condition.
Representative Julie Mayberry
Unverified
27:12
And before we go to this next section, I just wanted to address some of the
legislation. And I'm going to keep it very brief and very simplistic. It was a very frustrating session to me personally. And so that's why I'm enthused in seeing as many legislators as we have here. We spend a great amount of time talking in here on these issues and really discussing them and saying these are the things that we need to do. And ultimately it ends up being in the hands of legislators.
and we had a lot of legislators who I probably did not do a very good job explaining the needs beforehand and so moving forward that's my advice to the new chairs that will be leading this is to make sure that we're doing all that we can to get legislators to attend these meetings whether they're physically here or they watch online to see that these are topics that we've talked about And we've had the experts in the area of Alzheimer's disease and dementia sitting at this table and really talking about these issues in depth because it's really hard in a legislative session to have all of you come up here and share all that you've already shared over and over again.
and meetings occur at various times and sometimes you might be sitting here for two hours and that bill never even got heard and you all have lives outside of here. So that would be my one piece of advice moving forward is just we really try hard to engage more legislators over the next year before the next session on what those bills might be. Any other comments on anything you've heard from David Cook on legislation.
From anybody? Questions? Yes, Dr. Way. Oh, I'm
Speaker 50
29:02
sorry, Dr. Agar. Okay, you go ahead first. Okay. David, one question
Speaker 51
29:08
about HB 1164, about the cognitive screening. I didn't quite understand that very well. You said it is part of annual wellness visit. We have in our built-in record in EPIC slums which can be done, but that takes time.
And you said that it needs to be mandated. And what code will be, will we just apply the annual wellness visit code to it? And if it is not done, will the code not be applicable? So thank you for that question. I'm
David Cook
Unverified
29:49
sorry I'll clarify that. So CMS has authorized the code, and so your Medicare population already qualifies for that code. This would just expend that benefit to the Medicaid population, so those individuals under the age of 65, and the state would have to set a reimbursement for that code for it to be active for people under the age of 65.
Speaker 89
30:14
So as for the Medicaid population, that's all.
Speaker 49
30:24
I would just like to thank everybody for all your hard work, all your efforts. And what I would like to say is Winston Churchill told us, never, ever, ever give up. So I want to say that to us too. It's like if people don't quite understand what it is we're trying to convince them of
or explain to them, it is okay. We're going to do it again. We're going to do it again. We're going to do it again. And we're just not going to give up because this is so important that I want to encourage all of us to just,
Speaker 46
31:04
it takes a while. It takes a while to convince people sometimes, and it also takes a while for them
Speaker 49
31:11
to understand some of the things 'cause it's complicated. So I just want us to remember Winston Churchill and never, ever, ever give up.
Representative Julie Mayberry
Unverified
31:20
Thank you. - All right, we're ready to go. Representative Springer. - Thank you, Madam
Representative Joy Springer
Unverified
31:33
Chair. I just wanna give a shout out to the Reynolds Institute on Aging. They took care of my mom. They did a fantastic job. And I'm not sure if I said it the last time that I was here. UAMS is just wonderful, in my opinion. Thank you so very much.
Speaker 49
31:50
You are most kind, and we are deeply grateful. And any time you would like any questions answered or any advice or any help, please let us know. We would be deeply grateful and very privileged to be able to help. your friends or anybody that you know that needs help. Thank you. Okay, you
Speaker 78
32:14
can continue David. Thank you. You have
David Cook
Unverified
32:18
the implementation report in front of you.
It is very text heavy inside the implementation report.
I provided notes for each of the recommendations. We will not go through all of them today day unless the chair thinks otherwise we should read them all. I'm seeing a no. So I did want to just highlight some of the things that are happening in the space and I will go off script a little bit here just to kind of emphasize some of the the programmatic work that we were seeing.
So you know in the public awareness and education piece I think some of the key accomplishments is just expanded government infrastructure. Because of that, we're getting more, again, more legislators engaged and interested in this issue. We've certainly seen legislative support. But it's because most of our members of our assembly feel this issue personally, or at the least they know someone who has lived as a caregiver or a patient.
So I think having a permanent Alzheimer's Dementia Advisory Council and then statutory requirements to update the state plan has been very critical for us that keeps this issue in front of the General Assembly, House and Senate leadership, and the Governor's office. I think another key piece of infrastructure we did establish is authorizing the Dementia Services Coordinator. That legislation passed in 2023, but
as of today, September 15th, that position still remains vacant at the Department of Human Services,
And so that is an area of concern that I'll touch on in just a minute. Also, we've seen improved data collection. We have a policy change at the Department of Health that will ensure that the caregiver modules and the cognitive decline modules are included in an annual rotation so that they'll each be ran at least once in a six-year period. That will give us some real-time data about what's happening in terms of cognitive decline in the state and also what the Arkansas caregiver experience is like.
I can't say enough about bullet number three. I think we've seen increased collaboration. I think one of the things that spurred this group to come together is that a lot of people were doing work in silos, but the left hand didn't know what the right hand was doing, and there certainly wasn't collaboration. But what I've seen, the nonprofit community, Alzheimer's Arkansas, our association, the Reynolds Centers on Aging, the Institutes on Aging that are across the state, each have stepped up to ramp up their offerings.
We've seen partnerships with state agencies, the Department of Human Services, providing training to some of their key staff, such as the long-term care investigators, APS workers. We've seen increased collaboration with the Department of Health, working through the Minority Health Commission. Thank you. I was trying to say condition. The Minority Health Commission, Kenny has been an amazing partner. Being able to provide resources through the mobile health unit has been key.
And I think I want to mention just Dr. Jordan's STAP program at
UCA. That has expanded over to UAMS, and there's more places, opportunities looking to expand that program. So that's just
been amazing work that we've seen a groundswell happen. A lot of increased, again, programmatic work that you don't often see in policy, but it is still happening, driving these awareness pieces forward. But I think what we are most excited about, the Alzheimer's Association, again, is the deeper collaboration among entities and the opportunities that it's created.
On the access to care and quality of care, again, I'll focus on the partnerships between nonprofits and the public using our existing infrastructure, which is something that we've always talked about here in this council, whether it's working through the AAAs, the mobile health units, or, you know, of course, the Minority Health Commission's health unit or the Centers on Aging, but using our existing infrastructure, not having to go create new spaces,
but finding ways to enhance the programming and the services that are offered in those locations. And so we've seen an increase in the number of support groups, caregiver education, and just access to those critical support services for caregivers. Of course, I'll touch on this briefly here, but more on the family caregiver section, just
having that pilot program, the respite program has, of course, increased access to respite services
in parts of the state that were unable to access that, especially in rural areas.
But also seeing, because of having that payment model in place, facilities come on board to offer weekend respite.
Maybe it's in assisted living or long-term care. We've seen some facility-based respite escalate because of
the grant program. And then, though it's not a part of our report, science has certainly changed the landscape in terms of, There's quite a few recommendations on the access to care section that focused on using virtual education offerings, telehealth.
The way we use telehealth is drastically different than it was before the pandemic. Isn't that right, Jodi-Ann? So as those technologies have increased, we've, at the association, expanded our services through Project ECHO to get into more health systems. Where the struggle is, is getting that education and that training to the rural providers who may not be closely connected to a health system. So that's one of the challenges we're trying to address. There's also been advancements not only in treatments we've talked about today, but in our ability to diagnose.
You know, the last couple years, one of the areas that has grown here in the state is the availability of amyloid PET. Because that PET scan is critical, is a critical step in the diagnostic process. Prior to having treatments and that payment model in place, physicians relied on lumbar puncture or they referred their patients out of state to receive an amyloid PET scan.
But now, because amyloid PET is critical in the diagnostic process to make sure a patient qualifies for treatments, What we're seeing here in Arkansas is that oncology clinics are filling that gap, and so now we do have access to amyloid PET, which is encouraging. But as the science evolves in the biomarker space and being able to rely on a blood test becomes something that we can use as a standalone test or a more critical part of the diagnostic process, that will change the game for states like Arkansas who have limited access,
especially in rural parts of the state. So we're excited to see what's happening in the research space and biomarkers because if the blood test continues to improve, that will be another tool that we can put in the hands of primary care that would be huge for patients
Speaker 46
39:58
across the state of Arkansas. Dr. Way? Yes, I want to follow up on David's comments with regards to diagnosing. Soon we will also have beta amyloid available
for the amyloid PET test in Little Rock, but even more important than that, we now have the blood test, and the blood test is equally, absolutely equally, as critical and as valid as the amyloid PET. So you really don't need amyloid PET anymore anyway. The blood test for the phospho-tau protein, Phosphol-217, to be specific, is good enough.
Speaker 49
40:41
It is accepted by insurance, accepted by everybody else for diagnosis. So I think this is all important. We are making major headway that way. So I'm just real pleased to share that progress with you. We are fully, fully equipped and resourced with diagnosis as well as treatment. We now give the intravenous infusion of lecanumab or lekembi under Dr. Azar's direction at UAMS,
but also at other sites around the state. And many, many of our patients who have received it, I am so grateful to report. Their MOCA scores, which is, you know, the Montreal Cognitive Assessment Test, they have demonstrated significant improvement. really serious and some of these people have returned to work I mean how good is that that's fantastic I
Representative Julie Mayberry
Unverified
41:41
I'm just going to add that I think that we need to dedicate an entire future session
of course I won't be in charge we'll discuss this in a minute some future agenda items but two we we had a fabulous gentleman present information to the house committee insurance committee who was receiving that drug, and it was remarkable. It was fabulous testimony, very touching, and I think we need other people to hear that testimony, and so that would be, I know I'm getting ahead and we need to get back into what we're discussing, but
just a future discussion of actually seeing people now receiving that medicine, because before when we were talking about it it was the medicine is going to be available well now it is being available it is available and it's making a difference and we need to make sure it's available to as many people as possible so um future item um the other thing i i'm sorry david before we get back um because we are kind of talking about the um uh respite grants and before we began the
meeting Stephanie Cook kind of shared some information with me and do you mind telling everybody what you told
Speaker 14
43:02
me when when I walked in? So we we received just 60 percent of the total amount that we thought we were going to get when the fiscal year July 1 began. We received $167,000 and we have already approved and granted over 142 of that since July 1. So the grant is needed.
We've fully demonstrated that across the board. The rural numbers are improving, so more and more rural Arkansans are hearing about this grant. We could use double or triple the amount in addition to some matching funds from other sources. And our organization, quite honestly, and thank you for the opportunity, we need to include in that administrative fees because it is a burden on our small nonprofit organization
to administer this grant free of charge. And so that's something I've been concerned about with our budget process. So it's, but it's needed. And we're honored to be able to be a part of the process. And I want to specifically thank David for all the legislative work you've done in addition to other members of this council. We couldn't have done it without you. But our caregiver stories are remarkable.
And we have hundreds of those. Each person receiving a grant has to give us feedback on how their funding was used. So we have all of that data. If anyone is interested in these stories and their feedback, you're welcome to contact me or I'd be happy to discuss that further, you know, later down the road. Okay,
Representative Julie Mayberry
Unverified
44:48
thank you for sharing. So just kind of to repeat and reiterate, you know, by November 1st, without a doubt, you will no longer have money that was supposed to last all year long. So legislators, as we begin talking budget, that might be something that, you know, needs to be discussed and looked at as well.
So, okay, continue, David. Thank you.
David Cook
Unverified
45:09
You read most of my notes, Stephanie, so in its three years, the pilot program has done a couple things that are, I think, really significant that would be important for members to understand. First of all, we set a rural threshold of 30%. It's averaged 36% in three years, so that means 36% of the funds are going to underserved communities.
And second, when you look at the application of the typical caregiver who applies for funds under this grant,
their household income, usually it's around $60,000 to $80,000 annually. And one of the things we promised the legislature when we asked for this appropriation was that we were trying to hit those family members who made too much for Medicaid, so they didn't qualify for respite under the waiver services, but they did not quite make enough to be able to afford in-home care. And I'm happy to report that like 80% of our participants, I think it was 81.4% of our participants fall into that income category.
So we are serving the people that we promised we would serve. And that's because of the work of a nonprofit stepping up and doing more with less. And again, absorbing those admin costs, because the way the state has funded this, We've been able to do this work with zero impact on state GSR, by the way, because this is funded through a federal block grant that we received for the administration of community living. In the first two years, it was $200,000 this year because of budget cuts that went down to $160,000.
And so the need has continued to grow. And the numbers speak for themselves, just who the grant served. And the need is, again, great. In addition to
that, I mentioned the increased number of support groups. Always put your phone on
David Cook
Unverified
47:15
And then on the dementia training side, this will be the last section of the state report. I think the state's made significant progress in enhancing dementia training standards across the space. care settings. Of course, law enforcement, first responder training, just enhanced training standards where there was none in assisted living. So we've got that for entry direct care workers and also that continuing ed requirement that wasn't there before. Also, in the course
of that process, we were also able to strengthen the dementia training standards for facilities who may have a memory care or an Alzheimer's special care unit. We enhanced that specific pieces of dementia training in the rule process. And then, again, we were the first state to require home care providers to complete dementia training, so that was a huge, significant step. And I wanted to give one more shout-out to the innovative spaces
that have grown to, again, try to recruit more health care workers. Most recently, there's the Arkansas Healthcare Association's nursing school. I think that's a great innovative approach to help us recruit more to fill this gap that
we all know that we are
Speaker 110
48:36
experiencing in the healthcare workforce. Real
David Cook
Unverified
48:39
quick, as I transition to the recommendations, I do want to start by just emphasizing the fact is that we are learning more and more around risk reduction.
The Alzheimer's Association just completed a two-year study. It took us a little bit longer because of COVID delays, but it included over 2,000 participants at five different sites across the country. And what we really modeled this study after was a study that happened in European countries called the Fingers Study. There's still
a worldwide fingers network that we're a part of. And really
specifically, we looked at physical activity, nutrition, engaging the neurological space with neurological exercises, health coaching.
And the cohorts were separated into two different groups. One had a more of a self-guided clinical trial, and so they got the parameters and they were supposed to, you know, work on their own. And the other cohort was guided, very intense coaching. And what we found was cognition scores actually improved in both cohorts with only a slight difference in the guided program.
And so every participant experienced incredible increased cognition scores. Several participants, I don't have a number, but it's a pretty good handful of participants, They also lost a lot during this two-year intervention. They lost their reason to take diabetic medication. They don't need that anymore. They lost their prescription to blood pressure medicine. They don't take that anymore. Many of them experience weight loss.
We are learning more and more around risk reduction. We have made the statement before, and the evidence supports it, that 40% of dementia cases could be reversed by introducing lifestyle interventions. So risk reduction is going to be a critical part of our work. Our work at the association is about people and science. Our hypothesis was that this test would, or this study would actually mirror the results that we saw in Europe, and that was the case.
And so, you know, it was a very strong representation of the American experience. I think there was a representation for just about every demographic across racial, social, economic lines. So a very inclusive study. We were able to test it on multiple populations. And what we found is by introducing these simple lifestyle changes, you can improve cognition, protect your brain health. And it's the same things your doctor tells you to do that are good for your heart.
What's good for your heart is good for your brain. Cardiovascular health is key. And that being said, that segues into our conversation around developing a very robust public health strategy. Everything that we've been able to advance as a council in this state plan has been done without any state appropriations. We had some limited federal funding from the BOLD Act, but to really move this work forward,
especially in public awareness and education, I will say that the state is going to spend money. You're either going to spend money on the front end by driving risk reduction, early detection diagnosis where care is cheaper, or you're going to continue to drive up the Medicaid spend by paying for more costly care settings. I mean, that's the choice that the legislature has, in our opinion. You know, one of the things that we would like to see, I guess, as a paramount is the Dementia Services Coordinator be filled. We think that piece of infrastructure is critical to ensure collaboration among the state agencies.
And each state agency has said
Speaker 110
52:40
as much. And, David, I'm going to stop
Representative Julie Mayberry
Unverified
52:44
you right there because Brad and I kind of caught my eye because he knew I was probably going to bring this up. I'm filling in for Jay Hill today from DHS, and, you know, we passed legislation in 2023 to create this position, Dementia Services Coordinator
with DHS, and we have yet to hire someone to fill that position. So do you have any update on that?
Brad Nye
Unverified
53:09
I do, Madam Chair, and I appreciate the opportunity to address the committee. I'm pleased to announce that that position had been posted, is now closed. We have what looks to be a very excellent applicant pool. Jay Hill and his team reported before today's meeting that they're going through those applicants and they hope to start the interview process early next week. So we apologize for the delay. There was some conversation about moving that position over to UAMS. We ran into some, I think, statutory barriers in being authorized to do that.
So it did put us a little behind schedule, but happy that we're back on schedule now.
Representative Julie Mayberry
Unverified
53:47
So possibly by the time we meet again,
there would be a person who we could introduce in this new role. Is that correct? I certainly hope that
David Cook
Unverified
54:03
is the case. Okay, let's hope so. Thanks for the update. We hope that's the case. There is a Dementia Services Coordinator Conference that happens annually in November. And if that new person is in place, they would certainly be invited to attend that conference at no cost to the state.
One of the other pieces, again, just really securing a state appropriation to help us build and develop and implement a public health strategy. The nonprofits are doing all that they can. We've continued to try to do more with less. And so a state investment to help us drive public health work would be critical. And we're seeing other states have successes. South Carolina has been doing this for, I don't know, 10 years.
Wisconsin, over 20. Other states around us that have had really strong successes. And, of course, just implementing a simple strategy to protect people's brain health. We do it in every other disease space, just not in the cognitive decline space.
That is essential to help us drive not only risk reduction but early detection and diagnosis and also making sure that families aren't, you know, traveling
this journey on their own because no one should have to do that.
Access and quality of care, again, an emphasis on early detection
and diagnosis. It's way past time for our state to establish a reimbursement for
this billing code. for our Medicaid population, especially since our Medicaid population qualifies for treatment and you have to catch this disease early in order, you know, to qualify for the treatments
or those treatments to be viable. Family caregiver support, I think Stephanie's
already emphasized the need, but it's past
time for us to transition this program from a pilot to a permanent program. States like Kansas just established a state appropriation of close to $800,000, I think it was $750,000 last session for their program. Mississippi state appropriation is $350,000. Arkansas does not have a state appropriation. We are relying on the ACL block grant, but that has been cut. And our concern is if we don't permanently authorize this through statute is that once that federal block goes away, so does the program.
And then these families are back where they were before we started this. And that
Representative Julie Mayberry
Unverified
56:48
gave the best quote, and you just said it probably two minutes ago. You said, we're going to do more with less. There you go.
You're going to do even more with less up here.
when you said that i went that's his campaign slogan see it was just meant to be it was just meant to be so anyway i read it like he wrote it and that wasn't even planned but see they're just
preparing you okay let's warn uh dr way yes yes thank you so much representative may
Speaker 49
57:24
mary i would just like to share with everybody here uh and whoever you want to share this with and i should have sent a notice to Mr. Smith, which I will send right after we get back.
We here at UAMS are offering a three-day continuing education course starting October 9th through 11th. So that's 9 to 11 in October at UAMS. It is free. It's three days to talk about cognitive changes with aging, to talk about the common conditions that predispose to cognitive impairment, to talk about what to do about it, how to diagnose it, how to treat it.
And then our third day is devoted to caregivers and the support of caregivers and the patient. So we want to welcome everybody, if you can come, even if you can only come for a little bit, it won't hurt. And if you can tell all your friends and colleagues to come, it's free for everybody. The only people we're going to charge are people who are going to ask for continuing medical education credits, which you know is us. And nobody else needs to ask for that, and so it's free for everybody.
Speaker 49
58:42
November. And the last two days, thank you, Dr. Azar. The last two days, which is Friday and Saturday, October 10th and October 11th, are dedicated to cognitive impairment, cognitive deterioration, the diagnosis, the treatment, and then on the 11th, it's all for supporting the caregiver and the patient. So I think it's going to be very helpful for everybody who can possibly come,
even for a little bit. Is there going to be an online option? Yes. We actually do have a thank you for asking, Dr. Jordan. We do, and it is available as well. You just have to register beforehand, but it's free, you know, so I think it's all good. And the idea is the more we get people to talk about it, to share information about it, the more we're going to get support for funding, the more we're going to get support from the legislature.
Representative Julie Mayberry
Unverified
59:45
Okay? Well, at this time, we need to approve this report, I guess,
so we can be able to meet our deadline of October 1st and send it on to the House and send it into the governor's office. Is there a motion to approve this report? Dr. Way and Stephanie Cook, second. Thank you. David, it looks like you're getting ready to say something. Did you have one? Okay. All in favor, say aye. Aye. Anyone opposed?
Okay. Thank you. We know that's a lot of work. That is a lot of work to put all that together, so we appreciate your efforts there. We'll get this letter off. The next thing that we need to do is discuss future agenda items, and as mentioned, Dr. Way was talking about the new medications, Dr. Azar, and do you think you would be able to help us with a presentation? And this is such a huge thing.
I can't think of anything bigger in the world of Alzheimer's disease right now than this medication, in my opinion. And there's so much to know. And I think we really need to hear from people who are experiencing the changes and the benefits of it. And I would make a suggestion, again, this would be up to the two chairs to decide and figure out a date, but it would be great if we involved maybe even like a subcommittee
of the health committee and reach out and see if that could be coordinated. So we are bringing in more legislators to hear that because I think they needed to hear that testimony from them well before another legislative session. Is that, anyone have thoughts on that? It's a great idea. Okay. Yes. Great idea. Senator Penzo, you can help coordinate that. I think Senator Love, who just left, might also sit on that health committee over in the Senate and can kind of coordinate that.
So, obviously, that's one. And is there, are there other topics? I think,
Carrie Jordan, you said you mentioned to me that you had a topic you'd like discussed in
Speaker 45
1:02:08
the near future. Yes, this is a little bit out of
Speaker 44
1:02:13
the mainstream, but it's a topic that's come up with one of my caregivers, an experience she had in a geriatric psych facility in which she was restricted from being able to see her husband who had dementia.
The restrictions, and this is pretty common in gerry psych facilities. Visitation is usually restricted to 30 minutes a day in some places. And there may be rationales for that, but in this instance, it was very detrimental for both the caregiver and the person with dementia. He ended up coming out comatose and then died a week later. So I've been interested in looking at that topic.
And I have done some background review of it, of, you know, why are there, what are the legal requirements, you know, what's the legal rationale for restricting visits, and what are the medical rationale as well. What is the, what's the reasoning and what are the current standards in Jerry's site facilities in the state? So I personally would be happy to get some information on that topic, look at it and see if it's, I know in a lot of other facilities, you know, we used to restrict ICUs, we used to restrict visitation.
And a lot of those have been being removed because there's been a movement in person-centered care and they've been thought to be not person-centered. And I'm just wondering why are they still doing this to someone with dementia who's in a jury psych unit, can't have his family come and visit and advocate for them if need be. Do you agree, Dr. Isargood? So anyway, I'd just like to look at the issue. And I know if we put it on the agenda, it'll force me to actually get into the literature that I've looked up so far and I could present some things.
So if you would like us to put that on the agenda, I would be happy to carry the weight. It would just have to be down the road because I'm not going to
Representative Julie Mayberry
Unverified
1:04:21
be able to get it ready anytime soon. I'm not going to be chair in the future,
but I'm looking at both of the future chairs, and they say that sounds great, so we'll coordinate and work on that. Any other suggested agenda
Speaker 17
1:04:34
items? Yes, Judy Ann. You know, I'm always suggesting that insurance companies be brought to the table. One of the questions that I have, and David, maybe this was for you
when we were talking about Medicaid screening. Do you know if there's a differentiation between what the qualified health plans that are technically private plans that we do premium subsidy assistance, right, with the federal-state partnership with dollars? Is there a difference in whether those Medicaid patients get screened versus fee-for-service Medicaid patients? I don't
Speaker 127
1:05:05
know. I couldn't answer that today. I'd
Speaker 17
1:05:08
like to know, though. Yes. So my suggestion for a future agenda item would be to bring in some of the predominant insurance carriers and talk about their processes for how they make determinations of coverage for screening versus coverage for treatment versus coverage for drugs and those kinds of things.
Because patients sometimes get a false expectation based on the fact that they have insurance, that everything will be covered without understanding that insurance coverage varies plan to plan, employer-based, not employer-based, et cetera, and so forth. And, you know, we don't talk about insurance enough in the care coordination for patients and what's permitted and what's not permitted. So I would recommend that be an agenda item in the future. So moved. Okay.
Speaker 51
1:05:57
Anybody else? Dr. Razaar? I have a suggestion. Actually, when David mentioned 40% of the dementia is preventable brain health, so actually Dr. Wei is leading a study at UMS called Preventable, and that is a study that is to
Speaker 49
1:06:17
prevent dementia. So Dr. Wei can talk more about it. In five seconds, it is the largest study in the world of
Speaker 46
1:06:27
people 75 years and older to see whether giving a commonly used medicine against lipid diseases can prevent dementia.
I think it is very worthwhile for everybody to think about it. It can only help. And this is based on already preliminary data. So I'll be glad to present it in two minutes or less next time. It's called preventable. Yes, we want to show that dementia can be even more preventable. Dr. Amy? Also, I
Speaker 19
1:07:04
would like for us to have on the agenda some of the national models with dementia,
such as CMS has now have some of the family caregiving, education is billable, guide models, some of these, and let's look at how that is potentially impacting our state. Okay. Brandon's taking all the notes here, right? Okay.
Representative Julie Mayberry
Unverified
1:07:24
Any other suggestions? And of course,
you know, at the end of every meeting or, you know, in the future, if there's things that come up, we just wanted to create the idea of what do we want to get started with first and all that.
Any other closing remarks from anybody? Go
Senator Clint Penzo
Unverified
1:07:49
for it. Just wanted to say thanks to David Cook. He put in a lot of hard work in during the last legislative session, and I appreciate everything you did. I wish we could have been more successful, but with what Julie mentioned, getting maybe a subcommittee of public health together, we can file some of the legislation as ISPs and have formal discussions during the interim
leading up to the next legislative session. I think that's going to be helpful. Brandon's looking in to see if that's a feasible option. And if it is, I'm not sure if we'll use which subcommittee, whichever one's appropriate, but the two I think it is, is Senator Love and Senator Payton subcommittees, and I think they'd both be willing to do that on the Senate side, and we'll look into the House side and see who that's going to be. But I think that'd be a great idea, and we can time it right before a public health meeting anyway,
and people can come early and visit our subcommittee meeting and try to get more of a robust attendance. So hopefully we can vet some bills before the legislative session that'd be more productive, I think. Anything else from
Speaker 14
1:09:09
to thank you again for your leadership of the committee.
Representative Julie Mayberry
Unverified
1:09:16
Thank you. I appreciate it. It was a difficult
decision to decide. This is why I wasn't talking. To decide not to run again. And this committee has been a lot to me. As you all know, my mom passed January 9th of 2023, the day that we were sworn into office. So it was a really difficult time in my life, and she had dementia.
And so I know it personally. So this has been an important committee for me to be a part of. And just because I won't be chairing it doesn't mean that I won't be here. So anyway, I appreciate getting to meet all of
you and the many times that I've even reached out and called and asked questions on a personal level on what do I do. Thank you for being there for me. But you are in great hands, and it's important to have someone here who will be here in the next session to be able to champion these bills and get them across both sides all the way through into the governor's desk to be signed.
And that's important. And so much of what this committee does, too, is not just passing a bill, but it's just education and communicating. And hopefully when we meet together, we are getting an opportunity to at least exchange some ideas from people who are working on similar ideas, you know, similar things at the same time and do that coordination. So anyway, it's been wonderful, wonderful working with all of you. And I don't think there's any other business. And so we don't normally have a, I'm sorry, we don't normally have outside.
You can tell me afterwards. I'm
Speaker 138
1:11:01
going to say thank you. Aw, you're so sweet. And to your families, because your
Speaker 139
1:11:07
families are sacrificing to allow you to help us. So, thank
Representative Julie Mayberry
Unverified
1:11:11
you. Thank you. Always at all of our meetings. Public input is important. So, okay, and if there's no other meeting, I say this meeting is adjourned. Thank you.
Agenda
A. Call to Order
B. Introducton of Advisory Council Members
C. Consideraton to Adopt Alzheimer's Disease and Dementa Advisory Council Rules of Procedure [Exhibit C]
D. Consideraton to Approve Minutes from September 24, 2024, Meetng [Exhibit D]
E. Consideraton of a Moton to Authorize the Co-Chairs to Approve Special Expenses Incurred by the Alzheimer's Disease and Dementa Advisory Council
F. Advisory Council 2025 Annual Report [Exhibit F] - David Cook, Director of Government Affairs, Alzheimer's Associaton, Arkansas Chapter
G. Future Discussion of Agenda Items
H. Other Business
I. Adjournment
Note: All exhibits for this meeting are available by electronic means and are accessible on the General Assembly's website at www.arkleg.state.ar.us
Notice: Silence your cell phones. Keep your personal conversations to a minimum. Observe restrictions designating areas as 'Members and Staff Only'.
Documents
Speakers
Representative Julie Mayberry
Unverified
Senator Clint Penzo
Unverified
Representative Les Warren
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Representative Denise Jones Ennett
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Speaker 14
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Speaker 17
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Speaker 19
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Representative Jessie McGruder
Unverified
Senator Fredrick J. Love
Unverified
David Cook
Unverified
Brad Hall
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Representative Brad Hall
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Representative Joy Springer
Unverified
Brad Nye
Unverified
Speaker 44
Speaker 45
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Speaker 49
Speaker 51
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Speaker 43
Speaker 50
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