Alzheimer's Disease and Dementia Advisory Council
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9 documents
Bills discussed (1)
| Bill | Title | Sponsor | Status |
|---|---|---|---|
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HB1166
Act 102
· 1 mention in transcript
Matched: “…cess during the 2023 session. Our first bill was Act 102 or House Bill 1166 which was an attempt to strengthen the Alzheimer's Dementia…”
|
TO ADD AN ADDITIONAL MEMBER TO THE ALZHEIMER'S DISEASE AND DEMENTIA ADVISORY COUNCIL. | Duke | Notification that HB1166 is now Act 102 |
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Representative Julie Mayberry
Unverified
0:00
My co-chair, Senator Ricky Hill, unfortunately cannot be here today. Something has come up, but you all know that he's very dedicated to this and will be here at future meetings. The very first thing I'd like to do, because we have a new member, which we'll hear from her in just a minute, but if we could just go around the table real quick, just say your name and who you're with. Just so we are reminded it's been not quite a year. It's been months since
we've been together. So Carolyn, you go first. And make sure you turn on your microphone if you don't mind so that everybody can hear you. Yes. See,
Speaker 3
0:42
I have to get back accustomed. So I'm Carolyn Berry with Alzheimer's, Arkansas. And then turn it
Representative Julie Mayberry
Unverified
0:47
off when you're done. Absolutely. Good job. And you can also pull that microphone maybe a little bit closer to you if that helps so we can here because sometimes
Speaker 4
0:58
it's just kind of hard. Hello, I'm Dr. Gahar Elser from UAMS Reynolds Institute on Aging.
Speaker 7
1:04
I'm Jean Wei. I'm from the UAMS Reynolds Institute on Aging and Department of Geriatrics. Thank you. Carrie
Speaker 12
1:13
Jordan. I'm a professor of nursing at UCA and run the Interprofessional Therapeutic Activity Program there. Jay Hill.
Speaker 15
1:21
I'm the director for Aging Adult Behavioral Health Services with Department
Speaker 17
1:28
of Human Services. I'm Harlan Brough, state representative here in District 6.
Speaker 18
1:35
Tony Baylor with the Arkansas Department of Health chronic disease
Speaker 21
1:40
branch. And I'm Phyllis Bell, the newbie. I'm with Arkansas Residential Assisted Living Association and I'm looking forward to working with all of you as we
Speaker 22
1:49
help our fellow Arkansans. And Phyllis actually attended a lot of the meetings. She just sat in the chairs
Representative Julie Mayberry
Unverified
1:55
on the other side. So she's been around. She just wasn't officially
Speaker 24
2:01
a part of this. Hi, I'm Tatum Omby. I'm the chairman of the board for Home Helpers Home Care, also representing Arkansas Home-Based Services Association.
Speaker 25
2:12
Good afternoon. I'm Jodi Entritt. I'm the executive vice president of the Arkansas Hospital Association. David Cook. I'm
Speaker 28
2:19
the director of government affairs at the Alzheimer's Association. We missed you. I'm Rachel Bunch.
Speaker 31
2:27
I'm the Executive Director of the Arkansas Health Care Association and Arkansas Assisted Living Association. Okay. And then in the back. Good
Speaker 36
2:34
afternoon. I'm Kenya Eddings with the Arkansas Minority Health Commission. Okay. Did we have
Speaker 38
2:43
a seat for you? Oh. I think we do. I'm sorry.
Representative Julie Mayberry
Unverified
2:52
We got a name up here for you. I was trying to play show, so I'm glad we said that. Okay. Well, the very first thing we need to do, because we're starting our next round, is consideration to adopt Alzheimer's disease and dementia advisory council rules of procedure. And can I have a motion? You should have a piece of paper here, Exhibit C, that says that if I can have a motion and then a second on that. Dr. Wei?
and david cook thank you um all approved say aye aye any nay no okay passes thank you um and then the next is consideration to approve the minutes from the september 23rd uh meeting nearly a year ago wow we've done a lot since then though okay is there a motion to approve that. David Cook, thank you. And a second. I was going to say, tell me the name one
more time. Tatum. Thank you. Okay. All approve. Say aye. Anyone against? Nay. Thank you. Okay. We will move on to, we got to get all this business out of the way. Consideration of a motion to authorize the co-chairs to approve special expenses incurred by the Alzheimer's Disease and Dementia Advisory Council, which really we've had very little, so I don't expect that to be used a whole lot, but you never know what may come up, so can I have a motion on that? Okay, Dr. Way in a
second. David Cook, thank you. All approved, say aye. Aye. Any nays? Nope. Okay, motion passes. Thank you. We will move on to the very first thing, the exciting stuff is our 2023 legislative session review and new developments in research and that's David Cook that's going to do a presentation for us. He's the director of government affairs from the Alzheimer's Association and we had a marvelous legislative session. We accomplished a lot, you know, little steps and I
hope that the next legislative session we can do even more. But it all starts with little steps first. So
Speaker 47
5:06
David, I'm going to let you take it away. thank
Speaker 49
5:17
you representative mayberry um so i wanted to try to uh the first couple slides just
David Cook
Unverified
5:21
level set for you to give a picture of the impact of alzheimer's here in the state um and then also just do a brief review of where we've come as a state uh and then do some vision casting on where
we need to go uh towards the end of the presentation um just for your reference um we do know that here in Arkansas we have over 58,000 Arkansans over the age of 65 currently living with Alzheimer's and those numbers are expected to increase over the next few years in a very short time to over 67,000. We do have some county level data that I'm going to go over today that adjusts these numbers just a little bit so we'll talk about that in a few moments. I also wanted you to get a good handle on just the number of caregivers that impacts
When someone receives a diagnosis of Alzheimer's, typically family members are the first ones who provide that care. So in Arkansas, that represents over 154,000 caregivers. And just kind of just a snapshot of the impact of the care they provide in 2022, 268 million hours of unpaid care, and the value of the care that they provide is $4.4 billion in cost savings to the state. one of the things we learned from the behavioral risk factor surveillance system we we ran a
module in connection with the health department two years ago and the 2021 numbers revealed that in arkansas 11 and a half percent of those age 45 and over reporting that they're starting to experience confusion or memory loss and what what is most concerning on this slide is that the percentage of people who have experienced these memory concerns they have not had this these conversations with their physicians and that's over 50 percent so 54 percent of those who experience memory loss have not initiated that conversation with a physician or provider
what we also know is providers are not initiating the conversation either and so more movement needs to be to encourage people to have these conversations with their physicians when they begin noticing cognitive decline. And in terms of level setting, as we go through these next couple slides, I wanted to kind of paint a picture of Arkansas's engagement on this issue, and as we do that, you will also notice that over the last, really the last five years,
four and a half, five years, the state's accelerated its movement in terms of engagement on Alzheimer's and dementia issues, and part of that is because of the work of the initial working group that we pulled together, but also the work of the council in updating our Alzheimer's state plan. So I'll work through this really quick. In 2009, that's when the state first established a task force specific to our issue, and out of that task force, of course, the Silver Alert came as one of the recommendations. In 2011, we published our first state plan,
And then in 2012, on the federal level, the National Alzheimer's Project Act was signed into federal law, which kind of created a national plan to address Alzheimer's disease, which further motivated states across the country to engage on the issue in a deeper way. And then in 2018, an independent working group was convened to begin the process of updating the Alzheimer's state plan. In 2019, through unanimous support, both chambers recognized February 26th as Alzheimer's Awareness Day at the Capitol.
And then we established the Alzheimer's Dementia Advisory Council, which you all are a part, in 2021. And then November of 21, because of the work of the council and having this organized group, the state was awarded a core capacity grant under the bold act which it's nearing its end it was a three-year awarded grant that they had two years to work on just because of the funding cycle and then in 2022 Arkansas for the first time allocated funding for a dementia specific
respite grant program which you'll hear more about today and then in October of last year we updated the Alzheimer's and Dementia State Plan for the first time since 2011. Again, some level setting. You guys have that in front of you, but just Act 391 of 2021 established the council, but it also required the state's disease plan to be updated every four years, and then also reporting every other year on the progress of implementation of the state plan
so that our state plan does not just become a book on a shelf it actually is a living document that is actively being implemented. As Representative Mayberry mentioned we did have quite a few pieces of legislation that made its way through the process during the 2023 session. Our first bill was Act 102 or House Bill 1166 which was an attempt to strengthen the Alzheimer's Dementia Advisory Council by adding someone from the assisted living space and also our home care providers so happy to have Tatum and Phyllis around the table in an official capacity to help
us work on these provider types. We did file a number of dementia training bills per the direction of the council that's one of the areas that we looked at closely both in the independent working group space and as a council as well to try to identify some of the gaps that we saw in dementia training standards impacting various providers and so three pieces of legislation made its way across the finish line act 70 requires two hours of dementia training for home care providers the previous statute that governed these providers had alzheimer's listed as one of the issues they
were to cover so what we did in this piece of legislation is just clarify a certain number of hours and also clarified the content that we would like covered and then act 202 which was our second our third attempt I think at this law enforcement bill but we we required two hours of dementia training for our municipal law enforcement officers we do know the state police is doing some of that in their training academy but nothing on the municipal side and so we are beginning the process of working with the leader to try to shore up that curriculum and make sure
they're prepared that bill is not going to affect until January 1 because we wanted to get the agency enough time to get the curriculum in place. And then Act 335, which was a coordinated effort from Orala, the Arkansas Healthcare Association, and the Department of Human Services, requires four hours of dementia training, initial dementia training for individuals involved in direct care and assisted living facilities, but it also requires two hours of continuing ed for the
same staff that are covered in the statute. And the third piece of activity, I think this legislation identifies, it requires the agency, Department of Human Services, to update the rules that govern assisted living facilities. And that is an effort that is beginning shortly. And so we'll keep you posted on the developments with that. And thankful for Director Smith from DPSQA to DPSQA. I never can say that right, but thankful, Director Smith,
for engaging in the way that you have as well and your support. And also, Director Hill. And then one of the last pieces of legislation that we were able to pass was Act 682, which established an Alzheimer's and Demension Services coordinator within the Division of Aging at the Department of Human Services. and our understanding is that they are preparing to post that job so they're actively working to get that job posted and get that position hired. Happy to take any questions on the legislation
before we move on to the next piece.
Speaker 60
13:29
I just wanted to ask Jay Hill so that position has not been posted yet. No ma'am
Speaker 63
13:36
it has not yet. We are working on finalizing the functional functional job description. This is a
Speaker 64
13:41
new, a brand new position for us. There's really nothing like it that exists in current state government, and so we'll take a position. It just began with us under our appropriations bill
Speaker 15
13:52
starting July 1, and so our human resources was working through, and this will require justification submission to OPM as we are still under our hiring freeze,
but we anticipate that because this is a statutory requirement, we'll work with OPM to get this out time frame
Representative Julie Mayberry
Unverified
14:12
hopefully by the end of end of august okay appreciate the update thank you any
Speaker 51
14:20
other questions so far for david anybody else okay continue
David Cook
Unverified
14:24
david um and then uh the final which i forgot this was on here uh department human services included 200 000 in their appropriation request to fund the dementia respite care program that's entering its second year and we did learn
that was kind of funded by a federal block grant but it provides dementia caregivers with 500 grants to secure respite services and then of course we define the eligibility requirements that you needed to provide care be a family caregiver someone living with a primary or secondary diagnosis of dementia which is consistent language in our waivers and then you also must hire someone living outside of the home and caregivers are eligible for two awards in a calendar year but they must wait six months in between award period and you'll hear more about
that respite grant in a pending update. I'd next like to share just some of the the highlights that we learned recently, which is last week. The Alzheimer's Association's International Research Conference concluded on Thursday of last week, so this is really fresh off the presses in terms of the highlights that we heard from the research community. AAIC is, the Alzheimer's Association's International Conference, is the largest and most influential meeting of researchers from around
the globe. Each year, AAIC convenes the world's leading basic scientists, clinical researchers, and investigators, clinicians, to deliver updates on groundbreaking research discoveries that, of course, lead to methods of prevention, treatment, and improvements in diagnosis of Alzheimer's disease. And so this concluded in the Netherlands last week. We hosted an international site one year, and then we hosted domestically the next. And so this was in the
other ones. One of the exciting developments that we learned about last week is that donanumab, which is another treatment in the class of anti-amyloid treatments, which is what we are seeing in the first generation of treatments for Alzheimer's disease. Lakinumab, which you'll hear about shortly as well. Again, these are anti-amyloid, but the only way that these treatments are impactful is if you catch the disease in its early stages, so it has to be someone living with
early mild cognitive impairment. Donenumab is going through its trailblazer. It's phase three trials, and the reports from the phase three trials actually outperformed what we saw with lekinumab or lekinb. What we learned is nearly half, close to 47 percent of study participants at the earliest stage of the disease who receive donenumab had no clinical progression at one year, so that's huge. And then, of course, we also learned that the beneficial treatment effect
continued to increase relative to placebo over the course of the trial, and then there's something about the 18-month mark where they saw the greatest difference. In summary, this was really positive news. We do anticipate the FDA granting full approval of this drug later this year, perhaps in December or January, but the top-line numbers were really encouraging to know that we'll have as many as two viable treatments on the market by the end of the year. But again, it's also important to note that these are only valuable for people in the early stages of MCI.
So early detection and diagnosis is going to be a critical component, even more so as we go forward in our work. Several studies around gene therapies were reported using CRISPR gene editing technology. In one study, they were looking to reduce the impact of the strongest Alzheimer's risk gene, which is APOE4. And I want to highlight just because someone has APOE4, even though their risk for developing Alzheimer's is greater, there's no guarantee they're actually
going to develop Alzheimer's. But one study also aimed to reduce the production of the toxic protein in the brain, which is beta amyloid. Again, what the early drugs are targeting is amyloid, and I think it's also important to note that amyloid is only one part of the Alzheimer's equation, but these early developments are able to influence amyloid buildup, which is positive. One of the other developments in detection and diagnosis, diagnostics in Arkansas is severely
limited as it is across the state. I know our physicians use Spinal Tap, but also we don't have amyloid PET here, so they refer those to other states if they pursue that route. So the availability of being able to test for Alzheimer's using the blood will be a game changer in terms of early diagnosis and detection. We can continuously see traction and developments in the biomarker space which is encouraging and one study a simple finger prick similar to what they use with
diabetes was used to test detect markers for Alzheimer's with a single drop of blood which would be huge this came out of Sweden and what they noticed in this study is that the blood test was 80 percent more accurate than in cases where physicians did not have access to the blood test to detect for the biomarkers. So advancements in biomarkers is huge for our space in terms of early detection and diagnosis and also access to these tools.
They're not quite ready yet, but the research that we're hearing is promising that we are getting closer to being able to detect it in the blood, which will be huge. Another study examined the use of opioids amongst aging adults, specifically those with a dementia diagnosis And within 180 days after receiving their first opioid prescription, 33% of those participants passed away, compared to 6.4% of those without exposure to opioids.
So there is a higher risk of death and mortality in the use of opioids to treat individuals with dementia, according to this study. what we also learned is that there we also we always knew that there was a link between gut health and pretty much every part of our body but particularly dementia is an area that they have been studying as we look at lifestyle interventions that can help reduce risk what they did find out the university of massachusetts is that individuals with chronic
constipation have an elevated risk of developing dementia so again another link between possible lifestyle interventions to help modify some of these risk factors and the importance of gut health and when you kind of look at this study specifically one thing that in a conversation with the health department that came out is that we see a direct link with multiple chronic conditions so if you can reduce risk in one area you're reducing it overall this is another example of that because when you talk about diabetes or others we talk about the importance of gut health
so again another factor that we can address as we think about dementia prevention what we are most excited about is for the first time ever we actually have granular county level data and this is the first time that we actually had access to this and this was done by researchers from the russia university medical center in chicago and they kind of used U.S. Census data to build the forecast model.
And so it gave us a really granular look about what was happening here in the state. If you will bear with us at the association, this data has just become available to us, so we are still trying to find a way to get it disseminated to individuals. And so we're working through that process now, but we plan to have those out in the form of county-level fact sheets that we are working on developing. I did want to highlight for you two things. Kind of look at the state holistically.
What we learned at looking at this data, that here in Arkansas we have 563,300 individuals living in the state over the age of 65. Of that number in Arkansas, 60,400 are living with Alzheimer's over the age of 65, which is 11.3% in terms of prevalence, so over 10% of an impact to the state. And I did highlight some of the counties with the highest prevalence. Again, Lee County, those counties in the Delta, Chico, and Phillips all had numbers over 15%.
Lee with the highest prevalence number at 16.1%. And then you can also see on the screen some of the counties with the lowest prevalence. and I've just began to do some really intense work on trying to understand what what's driving prevalence one of the initial links that highlighted or can surface for me as I begin to look at this data is that when you look at these counties you also have health disparities other social determinants of health that are active but you also have high numbers of diabetes
hypertension and stroke all of those of course increase risk for dementia and so that's some granular data that's available to us that should help us inform our strategies going forward. David, I'm going to
Representative Julie Mayberry
Unverified
24:04
interrupt you for just a second because I'd like to spend just a minute talking about this and bring this subject back in another meeting and really delve more into it when you have more information. But many of you may have seen an article that was in the newspaper just a few days ago kind of referencing this study. And when the reporter called me and told
me that you had shared this information. I said, well, I want to see that map. I had just been at a meeting where CARTI did a presentation. And when you look at the map where the cancer was the greatest, it correlated also with this as well. So I think that, you know, when we start talking about resources and where we need more help and education and doctors and nurses and healthcare, you know, that that's really important to, I think it's more than just Alzheimer's. I think it's a lot of things. And I don't know if some of you who follow this matter a whole lot
more just kind of want to share some initial thoughts on some reasons why we might see the same areas having Alzheimer's disease and dementia at higher. Anyone care
Speaker 7
25:13
to share a thought? Yeah. Thank you, Representative Mayberry, and thank you, David. What I would say is
Speaker 13
25:22
this. To begin with, cancer has a number of risk factors, and we know many of them. Cardiovascular disease does too, and cardiovascular disease is the number one risk factor for cognitive impairment in dementia, all by itself.
So wherever we're going to see chronic conditions, cancer, cardiovascular disease, we're also going to see cognitive impairment in dementia. And the reason, of course, is because the roots that supply blood to the brain, if it's interrupted either by an irregular heart rhythm, like atrial fibrillation, for example, or if there's atherosclerotic plaque, or if there's valve disease, any of those things are going to interrupt the supply of oxygen and nutrients to the brain cells.
And the minute that happens, those brain cells get the message that they have to get ready not to have their manufacturing facilities up and running. They have to start to turn it down so they can save it for another day should there be better supply of nutrients. But when this happens over and over again, those manufacturing facilities are going to shut down. And once they do, then the ensuing events will continue. And that's why you're going to see cancer, cardiovascular disease, and dementia.
kind of co-locate, and that's very unfortunate because, of course, that's not what we wish at all. Any other committee members care to share a
Representative Julie Mayberry
Unverified
26:54
thought on any of that? Again, I'd like to delve more into this in the future, so if you don't want to say something now, that's fine. I just found it all really interesting, and when you look at the poorest areas of the state, you're also going to see the higher incidence of Alzheimer's disease and dementia and cancer and stroke and all that, you're going to see
less doctors, you're going to see less nurses, you're going to see less providers in those areas. So anyway, any other thoughts on that? Okay, if not, go ahead
David Cook
Unverified
27:27
David. I think Dr. Way brings up a good point. What's good for the heart we know is good for the brain and so as we, having access to data is great, but it's only effective if we use it to inform our policy decisions and our strategies going forward. So some of the initial observations that we had as we kind of drill into this county-level
data, the availability of this data will help us have more of an informed public health strategy where we need to target interventions and how we can get ahead of the curve by driving risk reduction, not only for our disease but other chronic conditions. And if we're investing a lot in trying to stamp out, for example, I always use this analogy, but stamp out smoking to reduce access to tobacco, it would be very easy for us to incorporate messages around brain health in our existing public health campaigns.
But also access to education in these areas is huge, and the association and our partners have limited capacity to be in every county. but there are some ways that we can partner and use our existing infrastructure such as our triple a's and our county level public health departments to disseminate education and awareness around brain health but also to improve access to diagnostics which is a complicated issue the availability of biomarkers will change the game in that but we're not there yet
and so looking at access to diagnostics but also encouraging people as you saw from the first slide that over 50% of those who are experiencing cognitive decline are not initiating those conversations. And so how do we encourage or incentivize providers to initiate those conversations and make sure the general public feels comfortable and safe having those conversations so we can normalize the conversation around brain health in a similar way that we have done over the last few years as we think about mental health. We've actually normalized that and
erase the stigma. There's still a lot of stigma attached with our disease. And so that's some initial preliminary ideas or thoughts that I had. I want to speak briefly about the urgency of driving risk reduction. When we kind of look at the county level data, even our state data, we've always argued at the association that we feel our numbers are conservative. And you can kind of see on the projected prevalence as we kind of look nationwide,
that right now in 2023, we're sitting at 6.7 million. And by 2060, that number is going to go to 13.8 million. But as you look at this graph, it's important to understand how this data is informed. This projection was used using studies for previous generations where there was limited access to processed foods, lots of healthy nutrition, working outside mostly. And so you've got all of these other factors that they base this forecast on. Well, now we're in new generations
where we have more access to processed foods, higher cases of diabetes, hypertension, all the chronic conditions that we've already mentioned today. And so it's safe to say that prevalence is going to look a lot more impactful than this, the 13.8 million. There's a lot of things that are driving prevalence that were not previously considered when this model was first issued. So I wanted you to understand and see that, but also vision a world where we could actually get ahead of the disease and change the curve, not only in our state, but nationwide.
And one of those areas, of course, is looking at some of the modifiable risk factors that we do know are associated with not only Alzheimer's and dementia, but other chronic conditions as well. In the majority of cases, an individual with dementia also has comorbidities that are present, so nearly 80% of those cases, that's what we find. While we do know there are some unmodifiable risk factors, there are also some modifiable risk factors, and the research is headed that way as we kind of look at lifestyle interventions that we can use to delay the onset of dementia and strengthen our brain health, certain medical conditions, health behavior habits, eating, what's good for the heart, what's good for the brain, social determinants of health, things that we can modify.
As we look at this evidence, most of it is population-based. It's based on observational data. And like I mentioned, there's a lot that we're still learning about things that we can do to delay the onset or reduce our risk for dementia. But we also need to be mindful, as I mentioned a couple slides ago, of the social determinants of health and the other things that are driving prevalence not only in the dementia space, but in other chronic conditions as well, as Representative Mayberry mentioned just a few moments ago.
and typically when we think about alzheimer's and dementia what is the first population we think about older and that's where we focus our efforts right one of the things that needs to happen in the public health space is shifting the mindset and encouraging people to have these conversations early as early as in your 40s in my age group working with your provider to establish an early baseline of cognition.
What I think that was hesitant is that there were very little or none at all treatment options. Well, now that you have the availability of treatments, and as research in the treatment space begins to accelerate, again, I want to bring back to the point that these treatments are only viable for individuals in the early stages of MCI. So we can no longer wait for aging populations to have the conversation. Similar to the preventions we do to monitor our heart health and other things, we need to pull over to cognition as well.
So risk reduction efforts need to be targeted at younger populations and younger demographics, which requires a public health mind shift because, again, it's not just I can't tell you how many times someone finds out about where I work who may be an aging adult who will say almost immediately, well, we're all going to need you someday. And even though it's said shorthanded, it says something about the way we perceive Alzheimer's or dementia. And so shifting the mindset to more younger populations
is going to be, I guess, even more important as we have availability of treatments. Happy to take any questions or any discussions. And everybody should have my contact information, but I'll leave it there on the screen. I don't see any questions, but I do
Representative Julie Mayberry
Unverified
34:15
know that we have a presentation that will be coming up in just a little bit further down the agenda on some of those new developments with Dr. Wei. So, we appreciate that. We like knowing that there are new developments, and we want to know what those are as quickly
as possible. David, as always, thank you for sharing this information. We're going to do a few other things that I forgot to do. the
beginning when we were doing introductions, I did not introduce Brandon Smith, who
is our committee analyst. I guess that's the official title. He is the one that contacts you, tells you when a meeting is, gathers all the information that we're going to be presenting. So if you have questions, reach out to Brandon. And he did tell me today that our two-year mark comes up in
September so if you were appointed to this committee by the organization that you're here which obviously you were appointed by them just make sure that they are going to reappoint you we need to have that confirmed in September if you will be the one that will continue with the meetings beyond that or if someone else will come in and represent your organization make sure Brandon has that information I have to be reappointed too so hopefully all of you will be back because I think we've done a lot of really good things and it helps to get to know the same people um and just a little bit on down the road we're going to talk about future meetings
and while it's on my mind i have to say it while it's on my mind um tatum is the other new member tatum owenby and so um we do want to talk about caregiving in the home um and so i i want to just put that in your your head right now that you might be in front of the committee here soon because I think that's another aspect of, and you're brand new to the committee. We want to meet you, know who you are, and welcome you. Which brings me to our other new member,
which is Phyllis Bell from the, let me make sure I've got the exact title, from the Arkansas Residential Assisted Living Association. And she's got a presentation for us. I'll let you go ahead and go down to the end of the table. On assisted living, I think that we want to make sure that we provide as many options for people as possible. Every situation is different. Family needs are different. The personal needs are different. And we want to keep every avenue open so that people can make the best decisions for that
individual because we don't want to put everybody in the same category. So Phyllis, welcome aboard. I'll let you go ahead with your presentation. Thank
Speaker 21
36:59
you, ma'am. As you mentioned, I've been in here several times, but on the sidelines, and it's great to be in the mix to seek solutions for the elders in our state. As Representative Mayberry said, I have been here, and I value what we are doing for the elders that we care for.
And I believe that Arala provides a good continuum of, is part of, is a critical part of the continuum of care. So in this presentation, David provided a lot of data. Mine is just kind of an overview of what we've been doing. I've been in this role since January of 2022 and look forward to expanding what we're able to do for our elders. So our mission statement, Orala's mission statement, is to provide services to assisted living and residential care residents.
Also to educate public and state leaders about the advantages of assisted living and residential care. We also provide educational opportunities for our members and their staff. We are out there promoting the cause of assisted living and residential care so that we can make sure that we have a good continuum of care for the elders and the individuals with disabilities that we may serve in our community settings. And we want to make sure that we maintain access to the quality of life choices for all Arkansans.
So Arala was founded in 1983, and we're governed by a board of directors, and I am the executive director. Assisted living, and I'm sure all of you are very familiar with what that is, but some people aren't, and they often associate it with long-term care. But assisted living enables a person to live in their own apartment while receiving 24-hour supervision and care while maintaining privacy in their own apartment. There's services that help them with bathing, toileting, eating, and drinking if necessary.
Also provide social activities and help with their medications as appropriate. There are other services designated to keep a person in the community, And as Martina knows full well, we had a long meeting today with several of our providers about how we make sure that individuals have the option to do activities in their local community. Not just where they reside, but out to go to church, to go to social activities, so that they have those options available to them.
Assisted living is comprised of people who have the wherewithal to pay privately. But there are also those who are eligible and qualify for Medicaid services, and those services are offered through DHS through the Living Choices Waiver. Our Kansans who are age 21 through 64 can qualify for that and or if they have a disability or age 65 and older. They do have to meet certain financial criteria, and they have to meet nursing home admission criteria
at the intermediate level. Room and board costs are not covered by Medicaid and they do have to have a need for at least one of the available services, bathing, toileting, eating, and drinking. Individuals requiring skilled care are not eligible for assisted living one and two. So therefore, again, that importance of having a good continuum of care based on the level of need that that person has
for their current situation. And that is assessed and reassessed as needed. Staffing meets all of DHS's requirements. And you can, in your presentation, there are links to the rules for that. We also provide residential care, which was kind of, it came about, and I've learned a lot about that, before assisted living in Arkansas. And it primarily right now helps individuals who maybe have behavioral health or mental health issues,
but it can also provide services to individuals who may suffer from dementia or other types of Alzheimer's, things like that. access is so important our members are in more than 30 counties in Arkansas and I wanted to share some information with you and I did not put this in the presentation and I can send it if you'd like to share it also when I came on board last year we discovered that since 2018 and it was
through a study we did with DHS through 21, that access had decreased, so that would have affected individuals with early stages of dementia or Alzheimer's not being able to have as much access available to them across the state. So we worked with the agency and completed a rate study. That rate study was passed, and with the change of administrations, there's always a need to review things, and so that was put on hold. Understandably, the new administration wanted
to make sure that what they were going to implement was in line with their mission. So, let's see. The benefits that Arala provides is advocacy at the Capitol. um for example last year we had assisted living week at the capitol we have planned it again for this year in the capitol rotunda and you're invited to attend um on september the 13th
wednesday at 10 30 and so we want to advocate for individuals to have the option the choices available to them for the best environment that they need to be in based on their level of need and care. We do several other things. We have an administrator certification program. We have an annual conference that will be in October. We offer continuing education, and we look forward to working with David Cook and others about providing that dementia training that was passed into law
this last session. We have community discussion forums for our members so that they can have access to information immediately. If there's news that comes out, we share that with them as it's appropriate based on the needs of our members and the people that they serve. Community partnerships are just so important. All of us sitting around the table, we have to work together to make sure that every citizen in our state receives the services that they
need at the level of care that they need. I think that I'd be remiss if I didn't mention something about funding that happened last Friday. So my presentation was prepared, and I didn't include that, and I'm sure that DHS is happy to visit more about that if they would.
Representative Julie Mayberry
Unverified
44:27
Before you get too far in that, can I back you up just a little bit because I was going to ask you to explain a little bit more. So last year there was a rate study that was done. The nursing homes who are receiving the state funds were receiving how much a day?
65 you mean assisted living assisted i'm sorry assisted living sorry that's all right yes they were assisted
Speaker 20
44:54
living was receiving 62 i'd have to i think it's 62 72 60 it was 60 some 62 72 i think was the number 67 25 that's i'm
Speaker 21
45:03
sorry there have been a lot of numbers out there 67 25 per day was the reimbursement. It had reduced, and that was part of, you know, the concern when you see
the number of providers in the state had reduced, the number of beneficiaries who received living choices, assisted living benefits had reduced in a four-year period. So that study was very important in recognizing that while those services were decreasing, we needed to look at maybe some of those causes and one of that could be COVID. Some of it could have been related to the rate and DHS during that time when we started that study or right prior to that they issued a
temporary rate for rural and for urban and it's 81 and change and 85 for rural. So urban rates They were reimbursed at $81.25, I think, and then $85 for rule. And so that's still less than what was recommended in that rate study.
Representative Julie Mayberry
Unverified
46:15
of the rate study?
I'm just trying to give a timeline for everybody to understand. So there was a rate study, and the rate study was approved by ALC. Yes.
Representative Julie Mayberry
Unverified
46:32
96-76. 96, okay. But that couldn't go into effect without CMS officially approving that. And I may let Jay Hill kind of explain some of this because this is his area, but I'm just trying to understand the timeline of everything that took place.
So CMS came back in January with some questions. Is that correct?
Speaker 15
46:58
So we submitted a document for consideration. There were some questions around our methodologies. How did we put the survey together? What constitutes the reimbursement for various sections of it for staffing, for operational costs? Now, when the recommendation came back with our actuary for the $96 rate,
Again, as Ms. Bell had stated, the submission of that for approval to CMS was placed on hold. We did have an administration change. We are undergoing an entire system of care review for Medicaid, top to bottom. And then when we went into session, and of course with our previous general session, Act 198 was passed, which created a cost reporting system for assisted living facilities. We're in the process now of preparing those documents, now that we're in FY24, for it's
a survey that we'll be sending out to providers. Providers are required to participate. All Medicaid, let me back up, all providers who have Medicaid beds will be able to submit their documentation back to the agency for consideration of a rate impact and a rate adjustment based upon what
Speaker 103
48:21
the numbers return to us. We have approximately, Phyllis, is it 50-52
Speaker 104
48:26
facilities with Medicaid beds? According to the numbers for 2022, you have 54.
Speaker 15
48:32
54. So what we anticipate is we will be compiling the data from all of those providers that have Medicaid beds to
Speaker 105
48:41
determine what is an equitable rate that is sustainable and that is warranted
Representative Julie Mayberry
Unverified
48:47
in the market that we have in our state. But we did have something approved for $96 a day, and that has been completely put to the side. And I think there were some assisted living facilities that were looking forward to that rate increase. So is there any guarantee that those numbers will show $96 again?
Or is there a possibility that they're going to go back down to the $67 a
Speaker 15
49:17
day? I couldn't predict what the data will show, what the numbers will show. Right now, as Phyllis said, we are still under a K under the public health emergency we have through November of this year. We are reimbursing at a daily rate of either 81 or 85, depending upon whether you're classified as an urban area or a rural area. Some of our initial
discussions with the association with the providers when we were creating the studies This has been a couple of years ago where the difficulties, for instance, of attracting providers in the rural parts of the state. And so we are Kansas didn't want to travel that many counties away from their home in order to find housing. And so that that that is the justification for the difference between the two rates and why the rural was was bumped up. I can't I can't tell you what the rate will come back up because I just simply don't know.
I will tell you what we are taking is, for the purposes of the cost report, Act 198 is very specific around areas that must be reported by the facilities. We are using the surveys that have already been created and have been put out in the past to really speed this process up, to not have to recreate something brand new. but because we have some methodologies that are already in place to use those survey processes that we have
Speaker 105
50:42
to make sure that they're congruent with what the Act requires and then, in turn, get that out to
Representative Julie Mayberry
Unverified
50:49
our providers for submission back to us. What was the cost going to be to the state to raise
Speaker 112
50:58
that rate from the 67 to the 98? Do you remember? I'm
Speaker 113
51:03
sorry. I am not 100% sure, but I'm fairly certain it was around $3.7 million annually.
Representative Julie Mayberry
Unverified
51:11
Okay, $3.7 million to raise that up to that amount.
Okay, so we won't hold you to that exact
Speaker 113
51:18
number. It's been a minute, but I believe that is the number. We were looking at around almost $1.9 for a six-year implementation had we implemented January 1 for the remainder of the FY. and then for a full term, I believe it was 3738, somewhere in that vicinity. And I don't want
Representative Julie Mayberry
Unverified
51:33
to put you on the spot, but we do have a surplus in the state over a
billion dollars. So I think that there's money in there, just my opinion. And I hope that we will see some assisted living rates go up.
I see some members have some questions. So Carolyn Berry from the Alzheimer's
Speaker 117
51:52
Association. Carolyn Berry from Alzheimer's, Arkansas. Oh, I'm sorry. I love working with David, but
Speaker 118
51:58
I'm from Alzheimer's, Arkansas. So there are 54 assisted livings that have Medicaid beds. How many beds are there across this state? Well,
Speaker 21
52:12
on the information that I received from DHS, and Jay may have more up-to-date information, but the information I have from 2022, December,
For beneficiaries who received living choices, assisted living services, was 1,140 was the number that we received from the agency. But you might want
Speaker 104
52:31
to address the number of beds. We have, under
Speaker 15
52:39
waiver, we have, excuse me, there are two caps that impact us each year. One is an annual, which is, I believe it's 1,725, the number of beneficiaries that can access the waiver in a calendar year. Our point-in-time limitation is 1,200.
So at any given time, we are not, 1,200 is the maximum number of beneficiaries that we can have on waiver. And I would tell you today that we are just under, we're under 1,000. We've not come, we've not been in danger of hitting
Speaker 113
53:06
our point in time. And so very often I get questions, well, is there a wait list? How long do I have to
Speaker 15
53:13
wait to get into an assisted living facility under waiver? And the answer is you don't. We don't have a wait list. I'm going to knock on wood. We're very fortunate that we have not since our waiver was created. And according to our current trends, and it could be that with a rate adjustment, to Phyllis' point,
that may impact the speed or at least the utilization of the Living Choices waiver. But
Speaker 105
53:33
right now, our trends do not indicate that we're in danger of having a wait
Speaker 3
53:40
list. Okay, follow up. Yes, follow up. Carolyn Mirren again. So the wait list
Speaker 125
53:46
probably, I'll make an assumption, comes from the facility with the Medicaid bids. Because I get calls about assisted livings and how to access them under a waiver. So I'm going to assume it's at the facility and not.
Speaker 15
54:03
It's the, let me just say this, the slowness with which to get into the program is probably one of two things. To your point, yes, our facilities do have a limited number of Medicaid beds. It's not the same in all of them. It was how many they've designated, how many of those beds they've chosen to participate in with their unique site that they will allow or that they will utilize for Medicaid reimbursement. Do you think with a
Speaker 109
54:28
higher rate, though, that they would be willing to open up more beds?
Representative Julie Mayberry
Unverified
54:37
Bell, would you agree with that? Would you like to chime in that if the rate were higher, they could afford to have
more Medicaid beds in there and we could service more people and keep them from deteriorating quicker and possibly even being moved
to a nursing home? Rachel, I'm sorry to put you on the spot. What is the nursing home rate?
Speaker 31
55:00
I don't know the current state average. It's different for every facility. So every facility gets a different rate based on their expenses.
Speaker 130
55:07
average or range it's close to 200 a day total which includes the resident social
Representative Julie Mayberry
Unverified
55:16
security check okay so 200 a day versus if someone could move to assisted living it would actually be better for the state it i would if we're talking about
just taxpayers well i would say it's different and maybe
Speaker 31
55:28
this is something we could present in the future it's hard to compare because the requirements are very different. There are a lot of federal requirements that the nursing facilities have that the assisted livings don't have that cost
Speaker 130
55:39
a lot of money. So it's a different
set of requirements and a different set of
Speaker 102
55:45
funding. And to add to that, typically you have two very different levels of care that
Speaker 64
55:50
are required for those beneficiaries. It is, and as it is meant to be, Rachel, I didn't mean to just to tail on to what you're saying, but she's right. It really is apples to oranges when
Speaker 15
56:01
you're comparing the two types of facilities. If I may finish answering questions, I think the second piece of that, and I'm not trying to open up a whole new discussion point, but it is also the eligibility process in order to access the waiver.
There is a Medicaid requirements. It is a two-part process that is both functional and financial. And at times, that can be a very lengthy challenge to navigate that system, particularly on the financial piece of that. And because there is a look-back period with Medicaid, it involves bank records. It involves assets. For a beneficiary, it may be working with extended family members who live out of state in order to pull together all of the information that's needed to complete an application.
And so for facilities, it really can be either a limitation of beds or the delays can very often be the application
Speaker 105
56:53
process itself because it can be cumbersome to pull together everything that is necessary to
Speaker 21
57:00
make that eligibility determination. Okay, Ms. Bell, I'll let, I'm sorry, I interrupted letting you talk. And one thing, Director Hill, and I appreciate our partnership and working together, another thing that is kind of a difficult situation is because of the waiver, providers who provide those services do not receive reimbursement retroactively.
So that also affects how many providers are able to provide those services. because of the nature of the waiver. They are not able to be reimbursed retroactively for those costs that they've incurred for caring for that person. So that determines how many providers can continue to provide or increase the number of beds that they have available. Carolyn Berry
Speaker 3
57:44
again. One more follow-up, I promise. So do you have the number or the average for private pay
Speaker 118
57:51
that they're paying a day compared to what Medicaid is reimbursed for assisted living, yes? Anybody? I would just
Speaker 31
57:59
say on that, it really varies across the state. We did a survey about private pay rates a couple years ago, and we're working to redo that again, but it's a very wide range. It does vary,
Speaker 21
58:13
and it depends on the provider and where they're located and the demand, you know, considering northwest
Speaker 142
58:18
Arkansas is going to be a whole different situation
than someone in East Arkansas. Okay.
Representative Julie Mayberry
Unverified
58:28
And Carrie Jordan, I think you had
Speaker 144
58:32
a question too. Yes, I had a question about admission criteria. And this comes
Speaker 11
58:37
from my experience taking students to assisted living settings and then also to nursing homes. And one of the things we observed was oftentimes people that were in assisted living were worse off cognitively than some of the people in the nursing home.
Speaker 144
58:54
And so my question is, when someone's being admitted to it in
Representative Julie Mayberry
Unverified
59:01
an assisted living environment... Carrie, can you hit your mic on? I could hear you. You're awfully loud, but
Speaker 146
59:06
people who might be watching online can't. Okay, so my question is related
Speaker 11
59:11
to admission, how the admission process to an assisted living works, and what sort of regulations are in place to make sure you don't have a person in assisted living who is actually worse off cognitively than they should be. You know, you hear about these people wandering away from these facilities
because there's not the structure that you would find in
Speaker 21
59:34
the assisted living providers are regulated by DIP squaw and Director Smith's long-term care division that requires oversight of that. I don't know if you want to address that at
Speaker 150
59:59
all. Martina Smith, DHS Department, Division of Provider Services and Quality Assurance.
So of course there are rules and regulations that say if a person needs a higher level of care then they are supposed to be moved to
Speaker 11
1:00:16
whatever that higher level of care is. does that look specifically at cognition not necessarily functional capacity because a person can be very cognitively impaired and
Speaker 150
1:00:26
yet still be fairly functional? Sure so you have some assisted living facilities they have ASCUs and so some of them go into those particular programs where they receive memory care and so and some have just memory care two different types of programs two
different types of criteria. That ASCU has the higher level of rule and regulation. So it is entirely possible that you may have someone in a nursing home, I'm sorry, in an assisted living facility that needs a higher level of care than someone in a nursing home, but there may be an ASCU. Okay, I'm going to get back to
Representative Julie Mayberry
Unverified
1:01:06
kind of a time. Did you have a follow-up question? Okay, I'm
going to get back kind of to a timeline here if we can backtrack again.
So some questions came back from CMS, if I'm understanding, and we waited until the end of the session, and then I think the governor or DHS secretary sent a letter back to CMS saying we're putting all this on hold. Is that kind of the story and we're going to reevaluate everything? We're not going to do this rate increase? And I believe that letter did say that you would continue until November 11th, the $85 and $81 rate until November.
So I guess that kind of brings us up to this week in ALC, and forgive me from the acronym, Arkansas Legislative Council, which is the body of legislators that kind of approve things outside of session. and it was approved for two million dollars and so to go towards assisted living facilities I'm going to let you chime in and explain what it is and let Jay Hill
explain how that money is going to be used and well it is is
Speaker 21
1:02:20
our understanding we're not sure exactly how that will be dispersed
yet I think the agency is working through that and we've provided some input on how we think that that's handled best for those that care for those that are most vulnerable and qualify for Medicaid, but we're waiting to hear back from the agency on that, and I know that based on Secretary Putnam's comments during ALC on Friday that they were working on that and hope to have something out this week, but I don't have anything further than that, but that will help fill the gap, and we did provide input because many of our members are providers
who care for those that are eligible for Medicaid. And it was a very difficult time when the rate decreased and the number of providers in the state decreased. So hopefully this will help us as we work together with the agency on the cost reports because we fully support that. We want accountability in state government
Speaker 142
1:03:17
and how those tax dollars are spent. Okay, if
Representative Julie Mayberry
Unverified
1:03:21
you could fill us in, Jahil, that
$2 million, How is that going to be dispersed among our assisted living facilities to provide care?
Speaker 99
1:03:29
So it is available to, again, it's those facilities
Speaker 15
1:03:33
that have Medicaid beds. Visiting with the Secretary's office, we will do an average number of beds filled, and we're going back to FY19. And so that
Speaker 113
1:03:42
will go back to July 1 of 2018 through the end of FY22. We thought it was kind of important to go back and look at
Speaker 15
1:03:52
what did we look like pre-pandemic. What did our populations and our census levels look like? And so those averages will be utilized to proportionally distribute that $2 million to all 54 of those facilities.
They must attest to losses incurred due to the pandemic and be willing to be audited for how they utilize those funds. I don't, to Phyllis's point, I don't foresee that being an issue with any of the facilities. They've been very open, very good to work with. And I think using that formula will be a much quicker way for us to be able to break down the funding and then push this out. And I would clarify, too, something that I've seen, I believe I've seen this written, was that this was a supplement to the rate.
Speaker 113
1:04:35
I want to make sure everybody understands that it's not going out like rates go out. These are lump sums that will be exported out to the facilities. And so this is not something my understanding is that we'll be piecemealing out over a
Speaker 154
1:04:46
period of time. but that will be made readily available to them to offset losses. And this isn't some
Representative Julie Mayberry
Unverified
1:04:52
type of grant that you have to purchase a piece of equipment or add on to your facility. This is to help them
recoup their losses so it can go towards their debt, the money that they've been out, to keep them on their feet.
You're correct. Okay. Are there any
Speaker 156
1:05:11
other questions? So Kenya Eddings. I just had a quick question. and Director Hill talked about the two-part
Speaker 157
1:05:16
application process. And I don't know if I'm assuming correctly or not, that might pose a barrier to some individuals and families. And I'm wondering, is there a method in place to kind of help streamline that process? I would say as slow as it can be,
Speaker 120
1:05:34
we have worked diligently to speed that up,
Speaker 113
1:05:39
to bring that down from what may at one time been 60 plus days down to 30 to 45 days to try to work through those eligibility pieces. I would say it's faster for some persons than others because their reporting requirements are just not as great or not as in-depth. They may not have had as many assets. They may not have lived in as many states. They may not have divested their assets among children in such a way, and so it is not as complicated, and that's really what I should use.
is not as complicated for some as it
Speaker 15
1:06:12
is others. The functional piece is generally a much simpler and easier determination to be made. It truly, generally speaking, when I see
Speaker 113
1:06:18
difficulties or I see delays in the process, it is because the financial piece. There are questions, there have been, there is a request for additional information or follow-up on a return of financial information. And I don't know how to speed that piece up. Banks are difficult to work with. I I would say
Speaker 15
1:06:37
it's easier to work with an Arkansas bank than it is to retrieve records once you go out of state.
Speaker 21
1:06:43
And so it generally is on a case-by-case basis. And if I can add here, Representative Mayberry, that is something as an association we've been working to help our members with is if they run into a problem with a lack of communication or not understanding why there's a delay, The agency has been very good about helping us try to help identify any issue, and we just try to help connect them with the people that can help them expedite that process as much as possible.
Representative Julie Mayberry
Unverified
1:07:16
Okay. And timeline now about you don't have the exact guidelines on that $2
million. You're waiting on the information to come in from the assisted living facilities. when can they
potentially expect to see some money in their hands? So I think
Speaker 99
1:07:33
we don't necessarily have to wait on information back from the facilities. That's different than the
Speaker 21
1:07:39
cost reporting. The cost reporting. The $2 million, what we're going
Speaker 15
1:07:43
to do is go back and pull claims data.
We have that information. You have it. We have already begun the process of pulling that through our Medicaid management information system, MIS. You hear that used often, ALC. We're pulling data from that
Speaker 113
1:07:58
on claims so that we can go to each provider that qualifies and begin looking at their census data based upon their claims per month going back to FY19. Okay. And
Representative Julie Mayberry
Unverified
1:08:09
that's underway now. When will they be getting a check? It's
Speaker 99
1:08:14
a good question. As soon as we can.
I say sooner than later. I don't anticipate this taking months to do.
Representative Julie Mayberry
Unverified
1:08:22
Would it be before the November
Speaker 15
1:08:24
11th deadline on the? Absolutely. Absolutely. Absolutely. Absolutely. I hope it would be more in the vein of weeks, not months, that we can do that. We have the approval. Of course, we took this back to Pierre last, I believe it was Monday. Monday or Tuesday, we
Speaker 64
1:08:38
went to Pierre. It was approved. And so I would anticipate we'll be able to do that rather quickly.
Representative Julie Mayberry
Unverified
1:08:45
We don't need to wait on that. Okay. And then the rate increase, timeline of when, the November 11th deadline on the higher rate?
Speaker 154
1:08:53
I would say we are working aggressively to put together our survey in order to export to our
Speaker 15
1:09:00
providers. There are a couple of things that we cannot control. One is the speed with which providers respond. We need those responses back quickly. Phyllis and I spoke at a meeting, was it last week we were at the Governor's Council, spoke with Scott Kingsborough. I've been beating the bushes. We've been talking with providers, with organizations to help us expedite the return of that information.
Speaker 113
1:09:23
there's a public comment period, and then, of course, what we can't control is CMS and the speed with which they return a
Speaker 15
1:09:30
decision. I would tell you that our secretary has committed to help us make phone calls to try to reach out to help them understand the necessity for expeditious treatment of this. And hopefully if they're watching now, they're saying, oh,
Representative Julie Mayberry
Unverified
1:09:42
I've got to stop watching, I've got to get busy and get my work turned in, right? It would be wonderful
Speaker 15
1:09:50
if they prepare on the front side.
Our previous survey, we had just over 50% of providers participated in our survey.
Speaker 113
1:09:56
So I do know that a lot of our providers, they already have a lot of this documentation on hand. If they kept their files, they're going to have quite a bit
Speaker 154
1:10:05
of what's going to be needed for the cost report, which should speed that up some. Okay. Any
Representative Julie Mayberry
Unverified
1:10:13
other questions? Any other comments? Phyllis Bell? I just appreciate the
Speaker 21
1:10:17
opportunity to be here and be a part of this council, and I look forward to working with each and every one of you and learning from you as we continue to serve
Representative Julie Mayberry
Unverified
1:10:26
Arkansans. Thank you so much. No, thank you. Great information, and thank you for clarifying everything
and having discussion on it. Okay, we will move on to the next thing on our list, and that is the
2023 Report of the Alzheimer's and Dementia Respite Grant, and Stephanie Cook is going to present that information. And I believe all of you will
have this piece of paper right here.
It has blue typing on it, and that's what she's going to be
Speaker 169
1:11:04
sharing with us. Thank you, Representative Mayberry. I'm going to ask Carolyn Berry to join me here at the table. Carolyn has been the member of this council during the pilot period of the grant that we were honored to administer during 2022 and 2023. And so I've asked her to give you some of those results.
And we have a lot of good information to share and some recommendations and even, if time permits, some feedback from some of those that have received some of the grant funds.
Speaker 3
1:11:43
So I'm Carolyn Berry of Summers, Arkansas. And again, thank you for allowing us
Speaker 118
1:11:49
this opportunity to administer the grant. And we have started the new grant period and it is going very well. So we were able to disperse the full 200,000 and we were completed by the end of March.
So by the end of March, we no longer, we had no more, we depleted all funds. There were 465 official applicants, and we granted 401 because there was supposed to be 400, but we granted an additional. We did have a few reallocations and a few applications that came in after the granted period, but we continually received dozens and dozens of calls throughout the granting period a year
asking if we had funding so it there there is a need and the state and the caregivers showed that tremendously we we kept the rule guideline at 30 percent so we were able to meet the rule guideline. Grant recipients represented over 108 cities and 52 counties across the state. I would like to just give us kudos on that part because with a limited
staff and with the help of everyone here in different agencies and TV and newspaper ads, we were able to meet a lot of people across the state. Based on the number of people, the way the grant worked is to be able to get another grant, you have to fill out a post-survey, and they receive a check upon approval.
So if we approve them, they get a check, and then they're able to hire someone, go to adult daycare, provide respite, short-term stays at assisted livings, and happy to report that over 85% of those post-surveys have been completed. So not a very, and we still have some going on. So based on that, we have August 1st.
We're going to give a full report, but we are still getting those post-surveys in. If they do not return a survey, they will not be eligible for any grants that we administer. So that is certainly a really good rate, and we are working on reducing it. I think another thing that is very important on the survey, some of the response from the survey is on the second sheet.
And not to my surprise, but a common theme throughout the post-survey focused on mental health and stress. They were just able to help their mental health and stress. We had a number of people that just said to take myself to a doctor's appointment. They used respite care, had surgery while receiving respite care, attended funerals, a lot, a lot of mental health.
And just every day going to the grocery store, maybe seeing a grandchild. So it really helped some and a few like so I could keep my job number 29. I had to travel for my job. I was stressed, didn't know how it was going to make it happen. And they have to travel two times a year. So being able to keep their employment. So this grant really helps, and not what we may perceive as respite here going on a true vacation,
but taking some of the stress off of their day-to-day lives so they can go to a doctor's appointment, attend a funeral. So it is very helpful, and our kids across the state need this grant. And with the amount of money, I know we went through $200,000 pretty quick, so at any time, if there is additional funding, that would be greatly appreciated.
Administrative fees as well could be one thing that's looked at. It takes a lot of time. We're a small organization, and I think anyone would at some point need. It takes paper, labor, other things you can think of, so if that could be considered at some point.
Speaker 169
1:16:51
Well, and one of the other things I wanted to point out, too, that we did report 465 applications. There were some of these were twice.
As David Cook mentioned, folks were eligible to reapply six months after they had applied and used the funds. So we actually had the actual number of people that received grant funding is 362. And so the sample that Carolyn just shared of the survey responses post funding examples that we have here are in their words. We did not manipulate the information.
So if you see misspellings or grammatical errors, this was strictly from the logs that we received back from these individuals. And I know our grants manager worked very diligently the last few days of our granting period trying to encourage people to return these logs so that they could, in fact, receive additional funding when more funds were available. So we were really excited, and these families were already actually sending applications in in advance
once they heard the funding had been approved for this next fiscal year. So we're excited to be administering the grant moving forward and have already received dozens of applications. So the word is getting out. I believe that we'll actually see a substantial increase in the number of physical applications that we receive now that people are more familiar with the process and they understand it. And one more thing.
Speaker 118
1:18:38
There is a capability to fill out an application online, so that has helped as well cut down some of the paper as well as some of the time so people can go online and we receive
Speaker 175
1:18:54
application. And one of the other additions that we hope to have available, I would assume within
Speaker 169
1:19:01
the next two to four weeks, is a Spanish-translated grant application and logs. And so that was very important for us to try to do, and we were able to get some volunteer support to help get all of our grants translated, actually.
Representative Julie Mayberry
Unverified
1:19:19
Thank you for that information. I'm going to point out number two. I'm just going to read it out
loud. It says, so this person used the grant for two doctor's appointments. Also, I had surgery. I was in the hospital from 314 to 317 of 23, had part of my colon taken out from cancer. So I'm going to fill in the rest of it, and I'm sure this is how that person would fill it out. On 3-18, after this person just had surgery to remove colon from cancer, they're now back to being the full-time caregiver.
That's a great possibility. So we don't know for sure, but I'm assuming that's probably what took place. So we need to keep that in mind that this is just a small little drop so that someone can do things to care for themselves.
any other comments from anybody about the respite grant just a quick
Speaker 157
1:20:09
question would there be any way to learn which of the 52 counties were represented yes we can
Speaker 177
1:20:16
send out information we've got a yeah
Speaker 169
1:20:18
we can uh we've got an excel spreadsheet with all the
counties and cities so we'd be
Representative Julie Mayberry
Unverified
1:20:28
happy to provide that any other comments thank you so much for the presentation definitely needed and maybe at some point we can find more funding to help more people. We will move on to some great new advances. Dr. Wei is here. Dr. Wei, I'm sorry. I always say it wrong. Wei. To share with us some new developments in the treatment of Alzheimer's
disease. And you also have a handout that she has. It looks like this. lots of words
I can't pronounce on it. Well good I'm
glad I'm not the only one
then. While we're waiting on this presentation to load
on the computer I just to remind everybody if you're here and you're part of the committee we do have a sign-in sheet if you could make sure that you sign in before you leave it's over here and that way we know that you were here and it helps with our minutes okay okay ready to begin thank
Speaker 180
1:22:00
you so much representative barry no it's
Representative Julie Mayberry
Unverified
1:22:05
okay i said your name wrong it's mayberry but i said your name wrong. So it's only fitting. I
love it. We're good. It's okay. When I got married, the pastor pronounced as man and wife is Mr. and Mrs. Newberry. So, and I
said, huh, does that mean we have to change our whole name to Newberry? So anyway, it's funny.
No, they didn't go on the license that way, but he did pronounce
Speaker 184
1:22:38
this Mr. and Mrs. Newberry. I I was like, what do we do? Yeah, okay. Go ahead.
Speaker 7
1:22:44
Thank you for allowing me to give this very brief update on the latest with regards to Alzheimer's disease drugs. Now, I just want to remind all of us that it's been almost 20 years since the last set of Alzheimer's drugs had been brought to the market. and you and I all know some of them work a little bit
and some of them don't work too well. And we've been kind of toughing it now for the last almost 20 years and then now we do have some new development. So I'm so grateful to be able to be here and share a little bit of this enthusiasm with you. Okay, I just want to remind us very briefly what we're talking about. So everybody undergoes a little bit of normal cognitive aging after a certain age.
And I know that there was a question about when does that really start. Some people think it starts in the 50s or 40s. It depends. But the bottom line is we're just not going to be as sharp as when we were 25, just a little bit less. Okay. With normal cognitive aging, we know that we get more easily distracted. We have more difficulty with multitasking. It takes us more time to process information,
and we can't commit to memory as much as we used to, and we also can't quite visualize the spatial issues as easily as we used to. However, here's the good news. Our verbal abilities increase. How do you like that? Okay, so that's very good. Now, on the right-hand side, you see we're going to be talking about early signs of dementia. And this is very important, too. When we see this amongst our family, our friends, our beloved ones, we need to think a little bit about it.
And the first thing, of course, is repetition. Some of my patients come in and say, you know, my child told me that I said the same thing seven times. And that really frustrates me. Well, if you see someone who is doing that repeatedly all the time, you better think about having a conversation and also seeing a doctor if possible. One also has more difficulty with daily tasks, and this is anything, you know. So one might forget who bought groceries.
It's in the refrigerator, or one might forget about the scratches on the floor from the furniture, and so there comes the idea that people are sneaking into my home and doing weird things in my kitchen or whatever. There also develops communication difficulties, which, as we know, it can be a foretelling event for people who are going to develop cognitive impairment and dementia between three to five years later. So I'll give you a couple examples.
uh can you say peter piper picked up peck of pickled peppers all right if you can you're good at least you're going to be good for the next three to five years or can you say can you say espresso coffee if you can say that you're good too all right now the other thing is you get an increased tendency of getting lost and of course all of us have that sometimes we go from one room to the other and we forget but getting lost is different when you don't know where you
really are that's a little bit more attention requiring there may be personality changes and that's something people notice you know sometimes people turn into really sweet loving individuals and sometimes they go the other way so we hope that if that happens to any of us here, that we turn into sweet, loving persons. Then there's confusion about time and place. And this is very common. And when people start to have that, if it's consistent,
then that's something you do need to pay attention. And of course, troubling behavior, such as refusal for personal hygiene, other things. You know, if they put their shoes in the refrigerator for some reason that we can't understand, that's not good either. OK. Now here, I just want to summarize very briefly the types of dementias, okay? At the very top, it's the Alzheimer's dementias, which comprises between 50% to 80%, and it's characterized by plaques, beta-amyloid plaques,
and also the tangles that are comprised by tau proteins. The amyloid plaques are outside the neuron, okay? And the tangles, which are comprised of the tau proteins, are inside the neuron. just so that we know, but they both are going to hurt and kill the neuron. And then these other less common causes of Alzheimer's, I mean of dementia, we're not going to talk about today because we're going to focus on all the good news that we heard in the last week that David started to tell you.
Okay, so here we are, Alzheimer's disease. We know that amyloid and tau proteins accumulate in the brain more than 25 years years before the symptoms appear. This is very noteworthy, and the reason it is, is if we can intervene sooner, how good would that be? And that's kind of where we stand on the threshold of potential interventions to delay. We're not yet there to reverse, but we're there to delay. So this is a nice picture of the
biomarkers and the rate of progression. You don't have to read everything. I'm I'm sure we'll give you a handout if you'd like. But the question for us now is not whether or not to intervene. The question for us now is when should we intervene. That is huge. You and I are so fortunate to be here at a time where we're going to be able to make some really important decisions and discoveries. Now I want to talk about biomarkers because biomarkers are always important
because they help you predict, and they also help you to track progress. And what am I talking about? Okay, I'm sure you've heard beta amyloid 25 times already or more. And what that is is those are the amyloid precursor proteins that are made in each cell. And then what happens is it goes up in abundance, and then they clump together. And once they clump together, it's very difficult to disaggregate and to metabolize or get rid of.
So here we are talking about it, and we need to know whether the A-beta 42 versus A-beta 40 is markedly increased as it would be, okay? And what about the tau protein? And in particular, the proteins get hyperphosphorylated. It's okay. We don't have to remember this, but we just want to know a little bit about it, okay? Those are the two things you want to remember always until later in five minutes.
Okay, then there are other things to talk about, but these are the two major markers, are the amyloid precursor proteins and the tau proteins that get hyperphosphorylated, and we'll talk a little bit more. The tau proteins are like parts of a railroad track inside the brain. They help to facilitate the delivery of nutrients and other things along the very long axon of the neuron. And so when there's problems, it's because the delivery is no longer continuing.
And when the tau proteins get hyperphosphorylated, they don't work as well. And so that's what we're talking about. Now I want to talk about the PET scans and the cerebral spinal fluid because PET stands for Positive Emission Tomography, and the fluid biomarkers stand for what is in the cerebral spinal fluid. And none of us wish ever to have somebody have one, but sometimes it's needed for diagnoses.
So these are the various biomarkers that we're looking for in somebody who might have some forgetfulness. and you want to know whether this could be or not Alzheimer's, right? So this is what you have. So if they have beta amyloid in their CSF, if they have the amyloid positive PET scan, then you're pretty sure that that's what they have. And then they become eligible for the latest version of now we have three drugs
And two are already fully approved. The third one has already applied, and we expect that that will probably be approved very soon. So I'm not going to talk about aducanumab. That's the first thing on your handout that we can't pronounce. Aducanumab was first approved in 2021, but it turned out to be a controversial decision, and it just didn't go well. Anyway, to make the whole long story short, the same companies now recently in January 2023 came out with a new drug that is now called Lacanumab or Lakembi.
It just received full FDA approval the first week of July. And it is really quite exciting because in addition to having received full approval, it has been shown to delay or slow the progression of cognitive decline by five months, a little more than five months, over an 18-month period. So we're talking during an 18-month period when the participants and patients took this medicine,
they were able to continue to function at a much better level than the ones who didn't get the drug. And this is about as exciting as it can be for the last 20 years. Okay? And, of course, we're following the progress and the outcome of all these patients because this really is honest to goodness hope. In terms of being able to buy someone, five months is a good long time. If somebody's trying to wait for a wedding or a graduation
or something monumental to have meaning for the family, for the children, for the grandchildren, it's fantastic. Now comes the next drug, which is the one that has just come out with the results. This one is called the Nanomap, so this is a third one we can't pronounce. And I want to tell you about it because the results just came out two weeks ago. It was published in JAMA, which is the Journal of American Medical Association.
And the reason this is just as exciting except just a little more is because actually almost half of the participants who took this medicine absolutely had no decline in their cognitive function. And this is opposed to 29% for those who didn't get the drug. Besides that, I mentioned to you lacanumab was associated with a 27% delay, right?
This drug, the nanomab, showed a delay and decline by 35%. What am I talking about? I'm talking about the fact that there was 40% less decline in the ability to perform activities of daily living as well as instrumental activities of daily living, including managing finances, writing your check, driving a car, engaging in hobbies, and conversing about current events.
Now, you just listen to that, and you read that, and you think, oh, my goodness. Yes, oh, my goodness is right. And this drug is given every four weeks by IV infusion over 30 minutes. Now, the one I just presented, Lacanumab, is administered every two weeks, but it's also by IV infusion. But the whole bottom line here is we are so fortunate
Speaker 180
1:35:49
to be alive and to have these options for our families and loved ones.
What about the side effects? Well, there
Speaker 7
1:35:59
are some fairly serious side effects, and they are called ARIA, which stands for amyloid. Related imaging abnormality. Yes,
Speaker 180
1:36:11
thank you so much. Area E, the E stands for edema, and the
Speaker 7
1:36:17
H stands for hemorrhage. And what that means is that while they're pulling out the beta amyloid clumps that, you know, we call plaques,
and while they're pulling out the tau hyperphosphorylated proteins, there's going to be little holes, if you can imagine, that the space used to be occupied by these clumps of proteins that are not helpful. Now there's little spaces. So that can make it easier for your capillaries to extrude some of the blood flow. And so now you're going to get area H for the hemorrhage,
and you're going to get area E for the edema. How bad is that? Well, it can give you some side effects. it can give you a headache, it can make you feel dizzy, and some people can have a serious complication such as a seizure. But most of the time they get over it and things get better. There have been a couple deaths in some of the patients who received it, but usually the families of these patients were just as pleased in the fact that their loved one had a chance.
in the sense that their loved one did get momentarily or briefly better before things didn't work out. So what I'm saying is we are still in the experimental phase of this, but how lucky you and I are to have options to contemplate that really can make a difference and keep them so that they can still do the things they love to do and spend more time with family and children and grandchildren. it. Okay, so what else can I say? Besides the drug, what else can we do? A whole bunch
of stuff we can do ourselves, and I don't want us to forget that. Of course, at the very top are things like exercise, lifestyle, dietary changes, and making sure that we have good hearing. It turns out we have now learned that hearing and the connections to the neurons in our brain, if that connection is not there, it'll result in what we call atrophy or loss of those cells. So make sure that if you think you're not hearing well, don't withdraw,
but go and get it checked. And many times it could be just earwax. How good is that? So please get that check. Okay, now we have to be present in the moment. We have to understand social intelligence and awareness, and we have to know about environmental factors. And now this is a very important thing, is to prevent head trauma, because it's only become recently appreciated that traumatic brain injury can result in dementia, and it can be just as serious. So we'll talk more
about that. And, of course, if we can continue to learn with mind-challenging opportunities, all the better. We have to be aware of genetic factors, of course, and we do know that APOE4, as you know, is quite a substantial risk factor. In fact, it increases our chance. If we have one allele, APOE4, it increases our chance for having Alzheimer's threefold. But if we have both alleles from both our mom and our dad to be ApoE4, it increases our risk 12-fold.
And women are even more susceptible to a more rapid decline than men. So we want to be careful and cognizant. But here's the good news. People who are even ApoE4 double homozygous, which means they have both alleles from both their parents, can reverse the entire increased risk
Speaker 180
1:40:20
factor by 12-fold if they do all the things that are listed on this slide. Okay? I'm talking exercise, lifestyle, you know,
do everything you're supposed to do, and you
Speaker 7
1:40:33
absolutely can negate the risk factor. So don't blame your mom and dad. You can still fix it. Okay, of course it's important to have friends and family connections. We have to think about resilience, and humor and curiosity are two very important components of resilience training. And, of course, we're always going to be looking out for new and future therapies. And I have good news there, too, that there are going to be other potential therapeutic modalities on the horizon pretty soon,
in addition to these exciting ones that we just talked about. So how lucky we are. Okay, thank you.
Representative Julie Mayberry
Unverified
1:41:19
Are there any questions? Yes, Carolyn Berry. Hey, Dr.
Speaker 125
1:41:22
Way, I do have a question because I received a phone call the other day, and I'm just trying to clarify as I help. So is it true that only certain doctors can prescribe these medications because they have to be, like, under their care and meet?
So only a few and certain doctors in Arkansas are able to prescribe these medications. Kelly,
Speaker 7
1:41:48
that's an excellent question. And the answer is because of the potentially serious side effects that are associated with the IV infusion that has to occur either every two weeks for lacanumab or every four weeks for donanumab, they have to be in a facility and have access
Speaker 180
1:42:04
to personnel that know how to deal if there's going to be serious side effects.
Speaker 3
1:42:10
Yes. Carolyn Berry, follow-up. So is there a list of those physicians available so when I get phone calls about
Speaker 189
1:42:19
this medication that I can refer them to? We don't have one
Speaker 13
1:42:24
right now this minute, but we can get one for
Speaker 60
1:42:31
you in the not-too-distant future. Excellent.
Speaker 157
1:42:34
Oh, Kenya, did you have a question? Sure. Just real quickly, Because we know that chronic disease and Alzheimer's oftentimes will have been occurring in rural, underserved, under-resourced areas,
what will the access to these particular treatments that can help populations, what was the access going to look like? Or how does it look
Speaker 190
1:42:55
currently? That's a great question also. And,
Speaker 7
1:42:58
of course, the more questions you ask, the better, because the more we talk about it, the more likely it is we're going to have more resources. So, for example, I mentioned the PET scan for the beta amyloid. Well, right now, we don't have the facility to do this in the state of Arkansas.
So we send our patients out of state, for example, Memphis, St. Louis, Dallas, Oklahoma. so it would be great if we could have it in state and of course the more we ask
Speaker 180
1:43:30
the more likely it is somebody will hear us favorably. Okay so Jodianne's probably going to help
Representative Julie Mayberry
Unverified
1:43:37
answer maybe a question that I was going to have like how do we get one of those in the state of Arkansas? Jodianne Tritt
representing the Arkansas Hospital Association. You're in the hot seat now.
Speaker 29
1:43:49
Yeah so I actually have a question for Dr. Way related to that. It's not as easy as you might think. So Dr. Way, while you were talking, I looked up the pharmaceutical manufacturers that create these drugs, and one of them in particular is really problematic here in Arkansas because it limits the distribution of certain drugs that it creates to hospitals, physicians, etc., and it really limits the distribution to specialty pharmacies and other things. So what can we do
from a state level to help push these pharmaceutical manufacturers to allow these drugs not only to be administered in our state, but frankly to be distributed here, sold here, and
Speaker 13
1:44:35
dispensed here? That is such an excellent question. I'm so glad you
Speaker 7
1:44:40
brought it up. We need the facilities to make the diagnosis, and we need even more the ability to have access and to be able to dispense these going to be potentially really transformative medications.
And it's going to get even more so in the next little while. We're going to see a couple more coming down the line. So I agree with you, but the best thing we can do is, of course, to write to all our most influential members of the community, right, some of whom are in this room and and to go from there and you are right it it is true we don't have as much access as somebody in Los Angeles or Chicago or New York or Boston but then maybe we
don't want to live there either and we like it here better so there we are but I think we're going to be able to get it we just have to keep asking just remember the squeaky wheel
Representative Julie Mayberry
Unverified
1:45:40
So I'm wondering if the to follow up on the medicine part of it if maybe a
future discussion is to have the Arkansas Pharmacy Association come in and do a presentation on this and see what we can do and I'm seeing all these nods headings so we'll get that scheduled and get that on there those
were great questions but back to that that PET scan how do we get one of those because that's not the pharmacy association that's the hospitals where would it go how much is that I don't even know I mean does the equipment not exist at all or is it just
Speaker 7
1:46:13
not used for this manner the equipment is available but the compound has to be made and then there's a very short lifetime so we have to order it for example it'll get sent to us but we can't do it all right now because we don't have the volume so it's not that we don't have people who have
dementia it's that we don't have right now yet the demand and don't forget this these two medications I'm telling you about the full approval for lacanumab just happened the first week of July and for the donanumab it hasn't even been approved yet so it's like what you know what we need to do is just create the enthusiasm and the in the request community-wide across all 75 counties then we're good good information
Representative Julie Mayberry
Unverified
1:47:08
any other follow-ups on any of that
Speaker 117
1:47:12
Carolyn Barry so I just wanted to say a couple of phone calls
Speaker 125
1:47:18
that I did receive from people that were qualified from the drug they got their PET scans from like the Mayo Clinic and somebody from Memphis so this where they received their eligibility to receive the drug but then they were looking for someone to to actually oversee. So, yeah, they did not receive that from Arkansas, just to let
Speaker 7
1:47:41
you know. Yes, Dr. Wang. We are, so for example, at UMS, we've just initiated the process of requesting for our
pharmacy to carry these medications. Of course, everything takes a little bit of time, but, you know, we're going to use the same enthusiasm and squeaky wheel technique, and we hope that we'll get it pretty soon. Okay. Carrie Jordan, go ahead. Did you have a question? Jay, did you have a comment or a question? You had your mic on,
Speaker 11
1:48:15
that's why. I didn't want to go before you. If the biomarkers, you said the biomarkers are going to become available at some point,
testing, and so will that replace the need for
Speaker 7
1:48:26
a PET scan? Well, that's what we all hope for. It's a situation we would love, and it's what everybody else would love. And yes, we think it's going to happen relatively soon, but relatively soon might not meet next week, but it'll be pretty soon. We know very well now which plasma biomarkers are going to predict. We know very well now which plasma biomarkers are going to help you track progress.
And so all we need is to get it to be commercially available, which it almost is. It'll be pretty soon. And then if we still need the PET scan to monitor progress or if there's other complicated issues, we could still get it. But you are so correct. that's kind of the silver lining if there were one with regards to the pandemic is that we now know how to get access to many things much faster than we used to.
Speaker 8
1:49:26
Okay. Yes, Dr. Azor. Go ahead. Actually, we don't need to worry about the PET scan because the way lacanumab is being recommended to be given, you need an MRI and you need eligibility. you need proof that there's amyloid, you can get a spinal tap and you can get the ratio of tau and amyloid, which will make the person eligible. So you don't need the amyloid on the PET scan. You can get the spinal tap, which can be done at UMS or Baptist or St. Vincent's. And we actually
send the spinal fluid to Mayo Clinic. We get the results back within two weeks or so. And the person is either positive for Alzheimer's or negative, on the basis of which you can start the treatment. And I did that with adacunumab and monitored the person. I did it once for one patient. And we can do that with lecanumab, but there are so many things that we will have to do because we'll have to educate the patient and the caregiver about all the side
effects, about the monitoring, and everything. And that will take some time. We have to have the drug in our formulary stored. We have to have our neuroradiologist. So when people talk about giving this drug in other areas in Arkansas, you have to have good neuroradiologists. You have to have nearby MRI facility. You have to have a nearby hospital with an intensive care unit. And if you don't have that, please don't recommend anyone to have the drug.
Speaker 180
1:51:13
I think those are really excellent points Dr. Azar just
Speaker 7
1:51:18
made. And coming back to the person who asked me about the plasma biomarkers, once we have the plasma biomarkers, it'll be even more accessible for the patients. And, you know, as is the case for any evolving situation or medical condition, we are standing Standing on the threshold of major improvements, and I can't be more enthusiastic about this.
This is how lucky can we be? And yes, there are contraindications.
Speaker 13
1:51:48
Yes, there are complications. Yes, we can't get it yet, but
Speaker 205
1:51:55
we will. Okay. Carolyn Berry? Okay. I am really excited about this. So on the lacanibate, is that
Speaker 3
1:52:02
how you say it? Lacanibab. Lacanibab. So it's two-week IV infusion. Is that, like, ongoing? Like, how long would those go on? Like,
Speaker 118
1:52:09
is it a certain time period or just ongoing?
Speaker 7
1:52:15
Well, in the study that just received full FDA approval the first week of July,
they did it for 18 months every two weeks. But in the process, they found their loved ones could maintain their cognitive level far better than those who didn't get the drug. So, yes, you're right. It's not feasible. It's not practicable for every single person. But, you know, at least now we have an avenue. We have a pathway, which is so important.
Representative Julie Mayberry
Unverified
1:52:53
Thank you. So it's one infusion every two
Speaker 7
1:52:57
weeks? For lacanumab. Okay. It's one infusion every four weeks for denanumab. But that one still hasn't been approved yet. And is that
Representative Julie Mayberry
Unverified
1:53:06
like over a two-hour time period type? 30 minutes. 30 minutes, okay. Yeah. Okay. Any other questions? Okay, fantastic. Thank you so much for the presentation. Thank you. Very exciting. We will try to follow up on some of these things that we just talked about,
see if we can get the Pharmacists Association. Some other potential topics. As I already mentioned, we'd like to have conversation about in-home care. First of all, we do have a new law that will require some more training for those who are providing in-home care. But I also believe that we, if you don't already call it a crisis, we're looking at a crisis on down the road of in-home care, providing caregivers. This is not just a topic for Alzheimer's disease and dementia, but it's also those
in the disability community. We really need to figure out how we can improve the care at home, how we can pay people more, and I'd like to continue some discussion that we've had in another committee that I was chairing about different levels of in-home caregiving along the same lines as following a ladder with a nurse, you know, in the nursing profession. You might start off, you're a CNA, you're an LPN, you're an RN, and you can, you're BSN and you can go all the way up because what I think the trend that we're
seeing is that someone who's really good at doing in-home care, they leave because there's no place to go up and they're making just barely above minimum wage and they can go work at, you know, a lot of other stores. I'm not going to mention brand names but you know where they are, you know, and a lot of other stores and can make more money and that's really said because they're really good at what they do and we want to encourage them so I want to have a little bit of discussion about that we'll bring you in to talk about in-home care are there any other topics that you think
that this committee needs to look at soon and if you don't
Speaker 13
1:55:11
can email me yes Dr. Wake I just want to mention that of all the 50 states and the associated territories Arkansas was the very first state out of all the states to require that home caregivers have to receive a minimum amount of training. No other state even required that.
So kudos to Arkansas. That's good. Kudos to David. Okay, so looking ahead just at
Representative Julie Mayberry
Unverified
1:55:40
the schedule, I had asked Brandon if he knew what was on the legislative calendar and all that. This is the last Tuesday in the month. And so if we follow that pattern, we actually had a really good number of people here. I don't know if Tuesday is a good day for everyone. But if we kind of start putting this on the calendar for the last Tuesday of the month, so at 1 o'clock, so we can kind of have in our mind that's when this group will meet,
as many of you prepare your schedules and doctors see patients and you set up other appointments. So that next meeting would be August the 29th at 1 o'clock. I'll get that confirmed. I did send that to Ricky Hill to see if he's available because he is my co-chair, and I don't do things without asking him. So, you know, pencil that in, and if you can kind of put in your head the last Tuesday of the month, our calendar legislatively I think is pretty clear at that time on that last week.
And any other points I was supposed to remind you? Make sure you sign in. make sure that you send on behalf of your organization does an email work if it's just an email or do they need a formal letter okay if you will send an email and all of you have gotten information from Brandon you should have his email already if you could send it to him officially from your organization that you want to be reassigned or if it's not you who it's going to be moving into this next, you know, starting in September. So any other notes? Okay, we appreciate
this. This is great information. Make sure people are watching online if you think that they, you know, need to hear this, that your organization sends that out and a lot of really good information that I hope people can go back and watch and learn. So thank you for your commitment and meeting is adjourned. You
Agenda
A. Call to Order
B. Introduction of Advisory Council Members
C. Consideration to Adopt Alzheimer's Disease and Dementia Advisory Council Rules of Procedure [Exhibit C]
D. Consideration to Approve the Minutes from the September 23, 2022, Meeting [Exhibit D]
E. Consideration of a Motion to Authorize the Co-Chairs to Approve Special Expenses Incurred by the Alzheimer's Disease and Dementia Advisory Council
F. 2023 Legislative Session Review and New Developments in Research -David Cook, Director of Government Affairs, Alzheimer’s Association, Arkansas Chapter [Exhibit F]
G. Discussion and Overview of Assisted Living in Arkansas Concerning Arkansas Residents with Alzheimer’s - Phyllis Bell, Executive Director, Arkansas Residential Assisted Living Association [Exhibit G]
H. 2023 Report of Alzheimer’s and Dementia Respite Grant - Stephanie Cooke, Alzheimer’s Arkansas
I. New Developments in the Treatment of Alzheimer’s Disease - Dr. Jeanne Wei, University of Arkansas for Medical Sciences
J. Suggestions for Future Meeting Agendas
K. Other Business
L. 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'.
Notice: Silence your cell phones. Keep your personal conversations to a minimum. Observe restrictions designating areas as 'Members and Staff Only'.
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Representative Julie Mayberry
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David Cook
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