Public Health, Welfare, and Labor Committee- House and Senate

Good morning everyone a snacky and the chair sees a quarm will call this meeting to order. Sorry we're running a few minutes behind. To begin with is everybody's fine in their seats we have a group here in the audience we want interdees the archaic community college leadership arkansas community college's leadership institute yes if you're here stand up be recognized they're here today these are administrators and staff from community colleges all around the state and they're here to learn. It says you're here to learn how the legislature works if you if you figure that out if any of you figure that out before the end of this meeting out by cell phones four seven nine eight eight three six three nine three you fight it on the internet you all give me a call and let me know how this place works yeah I would love to have some insight so anyway we're glad you're here today thank you first thing on the genders to consideration about the minutes from the prior meaning that we're going to motion to prevent minutes all those in favor say I minutes approved first step would be. And we have someone here to present on also that correct sim from there. Ls association. Have janet thorn david britain. And tommy may. Doctor doll suit you ever see to present please come to the table if you press the bed on your market you'll get love there to turn red just introduce yourself say state your name for the committee in what you stated I am you're recognized to present. And green sound gain it may be green out of green red you look who knows i'm janet thought me i'm in the managing director for the also association mid south territory which includes your state of arkansas and I really want to express my appreciation to the committee for having us here today it's greatly appreciated there is great need and we just want to talk to you a little bit about what it means when you hear als before you get to start a kid we guess have everybody the table introduced themselves just so that for the record so that there is talking. Yeah managed david brunton and the chair of the als association leads you council for architect. I'm back to royal tale and the department of neurology at the university of arkansas medic. Tell me may thank you yet they're you're not could you say one more time. See you mark went off if you press the better it'll be there you go now state your name okay i'm tommy may and I am thank you for being here today pressure to all go ahead miss the one you recognize okay thank you very much again for for your opportunity for us to be with you today we're greatly appreciated a minor traffic literal school says a o s er simply means no muscle movement you more commonly have heard of it is lucarics disease and i'll always remember my mom had a similar brother googled am I a traffic later on scroll sitting at weight janet that's lugarix disease so that speaks volumes when you're diagnosed with this disease initial symptoms of this disease might be just overall limb on set of muscular weakness someone not me having a difficult time walking any distance their arms are losing weakness ballbar on set as another potential symptom that you would recognize and that affects the throat the swallowing and speech. Or just generalized for fatigue and faciculations which means muscles are twitching and so you don't know why you present your primary care position usually and begin the diagnostic process. Unfortunately that process can take an average of eighteen months this is a fast moving disease often times it is individualized but it is a past moving disease so time is of essence. There's no known cause at this point and there is no cure certainly being sought research as being done but we don't have answers right now veterans unfortunately and again we don't know why but they are twice as likely to be diagnosed with als as the general population that are environmental causes that are being looked at many things are being looked at but we do not as of today have that answer that we are so desperately in need of. So as well as per diagnosis and initial symptoms being individualized progression is also individualized. Yeah. Average life expectancy unfortunately again is to to five years there are out wires who live longer than that live longer than five to ten years. Again frustrating and science and in medicine we don't know why we want answers but at this point that's what we're looking at there is progressive muscle weakness and eventually full paralysis with the inability to move your muscles slowed speech often happens. Yeah. I can tell you today that all is always speed on the timing may not be known and it is individualized but it is disease that is a fatal so unfortunately often times of the diagnosis people are told to go home and get their affairs in order but we do have some help and we do have some hope now and the best thing that we have to offer or our and less specialty clinics in arkansas we have one also specialty clinic so many arkansas simply cannot access the very best hope that they have and that is to be seen by new york muscular specialist such as doctor doll who is with as today to get ahead of some of these symptoms to help extend like to use some of the medications that now are present that can be used only not to cure it is not to currently ls but to slow the progression of the disease and give a quality of life add it on to the life of someone who is diagnosed with a ls. Causing death respiratory failure the difference is the muscle if the data frame cannot move because the motor neurons have died the muscles and nerves aren't connecting it can't move it cannot move air throughout the body and so without living on lifetime of restoring support you know for an undeterminated amount of time that is the cause of death restory failure at this point in arkansas currently we've served in two thousand and twenty three right around a hundred and thirty people with also we truly estimate that there's twice that many are kansas who need our help we need to be able to do outreach in the rural areas as well as here in the city in order to reach them and provide the help in the hope that is available and again I would say our clinics building out multi disciplinary clinics as vinally important to the people and the families who were dealing with a os. In conclusion because we have many other experts sitting here at the table and i'm give my time back to them a briefly want to speak to my experience this is personal and professional to me i've dedicated my life to awareness of this disease because my mam was diagnosed in two thousand four. At that time there was nothing offered she was diagnosed and told like I said earlier go home and get your affairs in order so it is both personal and professional to me my mum are being diagnosed with nothing available to help her no support groups no one who understood and I think you can agree that if you're dealing with something in life and no one really understands what that is the isolation and alone as you can feel is overwhelming as much as the physical disease itself so we do here in arkansas provide support groups so if surprise we provide help and hope durable medical equipment such as the complex will charge you saying that mr may you lies we make that available on a loan or basis to people who can access the equipment that they name. So this is why we're here basically we won't need to know what is going on with this disease process there are things that are being done on the federal level so that we do ever can see for a social security is the present of disability now so we've done a lot nationally and with the department of defense because it affects better and so greatly but we're sitting here today in your chamber and we would be remiss we truly feel we would be remiss not to inform you of the arkansas that are dealing with terrible disease locally. And just that's what we're doing we're here to inform educate and ask you to help us provide that help and hope in a time of need so that concludes married marks there's much to be done I can there's much to be said that I will pass along and thank you very much for this opportunity again. I'm available for any questions now or after recomplete well I know we have a couple of questions i'd really like to hear from everybody I apologize for being light there was horrible traffic on the I the bridge come in across the river but I would really like to hear from everyone before we get a questions perfect thank you very much. Okay so a manager david brunton has said before and i'm grateful for the opportunity to share with you today some of my wife's journey with a less. And a little of my experience to care giver. And my wife fruits with diagnosed in early twenty twenty one at the age of sixty with no history of a less in the family. As you can probably gather i'm not a local we were living in in an island called jersey off the south coast of england where we had very limited specialist medical facilities. But fortunately she was diagnosed very quickly. And immediately she was offered a the opportunity to voice bank and to have a feeding to put in which we which we took up. At risk told the medical teams that she was going to move to the usa. And they they laughed at it didn't think that would be possible a clearly they didn't all my wife very well. And she made it happen so on the twenty eighth of june twenty twenty one we walked into the usa she turned down any help that i'd arrange with special assistance. And we were there with a green card and enough console blue cross blue shield insurance policy. She really had no idea how brave you was moving five thousand miles set up hold within usa with no pre arranged medical support and determined illness. And. But a faith was so strong and she was the brave small stubborn person i've ever known. She didn't move to save a better treatment and resources for itself. But because you wanted me to have family insurance port networks when she was gone. She very quickly put a dnr in place which scared the living dialoups at me as you didn't want to be burdened on anybody and she also planned their own funeral she didn't want me to have to deal with that as well as grief. And so here we are we've arrived in rogers northwest african so. And I came across the also association in rogers and and the clark was amazing she sorted his own doctor's dentists opticians. Things we could load and things we needed to buy things to refuse to let us buy she really put my mind it the ease as much as she could. And she also got roof accepted onto a clinical trial for a new called radical. A she also outlined with the clinks that were able for us to tend and it felt strange to me that it was easy for me to attend a. Clinic in missouri. Rather than stay within the state of open soils three hours drive each way to little rock or it was two hours drive to spring field. And that doesn't sound much of a difference but it was a it was a long day anyway so if we were adding three hour drive on either end I went to the two but how many patients can't attend to clinic because they don't have the right form of transport or the conformed gas in the car and therefore the missing out on that specially support. In terms of progression the als affected roofs voice and lakes to start with. When walking became difficult we moved on to a walker in a wheelchair thanks to the ls association with enough to buy those. Then we were ready for a power wheelchair but that almost didn't happen it was one very similar to mr mays. By christmas twenty twenty one she chosen the right chair for her the doctors gave the support and the manufacturing started on the custom order. And then we hit a brick wall. At the insurance company wanted to pre approve items like that but they didn't know whether they wanted to approve it enough the manufacturer wouldn't build a chair unless the new he was paying for it. So we will get you know we're so much to my wife's horror and upset I said I would underwrite it. Uh. It was according to the insurers it was around thirty thousand dollars. And we were just blessed that we could. We could afford to write that off if that's what we needed to do. Er but what about people that can't afford it we had a lonely chair from there less association but with all you respect that was intended for a six foot for five guy my wife to between five foot tools so that the chair drowned it helped to start with. At the insurance company would generally ok about my perception was that they have no idea what happened a less means. And do need to educated and perhaps have a dedicated response to. As another example of the new drug approved for als treatment in september twenty twenty two by the fda called delivery. That I wanted for roof and I got the clean and the farmer toothpeak company on board up the insurer refused declined our request. As the drug wasn't on the reproved list. Uh when I pointed out that it couldn't be because it was brand new they asked if I could come back again in three months. When they might put it on the list. And when I pointed out we might have three months they change the mount and approve the drug. But why did you have to cause up stress in the first place. Why do people they are let's have to fight for what they need there needs to be more support financially the mostly. So at the time time we were doing this I bought a dodge. I call it a tank but apparently you call it an adapted van that could carry the power wheelchair. That roof was upset and crossed that I paid twenty five thousand dollars for the van. Because she thought I would need the money later. But with a power chair in the van we could pick up take care grandson from to school we could go to church. We could go to walmart we could try and lead as normal life as possible. Again we were fortunate we could just go out and buy them. But what the people do that can't afford it or have suitable transport. You've been trapped in your body was enough it could be trapped indoors too. I'm sure she would be in please that I sold the van within a week of a passing as I knew she wouldn't want to exit in in the garage when it could be being used by another family. Over a short period of time roof lost the use of the legs armed and hands as well as a voice. I was so please were in the us of access to the latest technology. So for example. We were on three specific drugs and only one of those have been approved for use in the uk so for me were in the right place. We were able to adapt to power chairs so she could stay with her eyes using I gaze in a small tablet. We use the same tablet allowed to send it received emails send text messages so if the internet and try and keep me out of trouble she was able to read newspapers online and listened to a beloved music all using the rise to type rom the fingers. She'll use the device to communicate with me using the voice bank. An unbridge invoice in a non profit were amazing help in that. Very quickly my limited cooking skills were put to the test as we adapted to what and how she was able to eat. That the outset swallowing was ok but lifting a fork or speed to a mouth became so hard she was exhausted after a meal it takes so long I would often not bother eating as hours emotionally drained after feeding it but it was insisted that she should be first. So we moved on to finger foods and for a while that helped. But then without became difficult I suggested I should feed it. And I know that was a really hard thing for its agreed to and she suggested it might be easier if we started using the feeding cheap. It would have made life a lot easier for me but to go along with it but that wasn't the point and so the least you agreed to let me feed a. I know it is very humiliating for her but it was the best way that we get nutritional food down. And then after a while we we used to blend it we just had to adapt each day to what normal look like and we dealt with it. It was all about treating it with love dignity respect. One of the hardest things that to do was taken over clean in a teeth something we do without thinking. She was very particular about this and he was out having to try replicated. So arrange the monthly trip to the dentist so she could have the comfort and knowing that the teeth were being well looked after not by me by the dentist for me it was always a stressful is it because an if you'd needed any work doing guess who was to play. Thankfully she never did. But again it was a an initial expense but it was a strategy that we could afford to use. But what about patience that can't and therefore back to your new money could be inflated. There for me I had no idea what being a care was all about. It was just assumed by both that when we had the diagnosis that's what I would do. I had no medical or care giving training. Als changed all that the truth was lying on me and you soon became an expert is michael j fox ones put it because you live in and dealing with it every day. I ended up doing things I had no idea was capable of but we've had complete conflicting me. The best way to describe it was it was the hardest role i've ever had she was definitely at the top of its boss i've ever had. But it was the most rewarding thing i've ever done it's ability to spend two years old every hour of every day it was such a blessing. But what about those caters that have to go work the make alternative arrangements that love ones because the counterfoil to stay home with them. For me being a care of his only part of the job then you add on the battles with the insurance company to get things agreed. Chasing for medication so you don't run out making sure she had a medicines at the correct time preparing meals planning trips and of course making sure that the house is neat entirely cause that was a big deal for it. She didn't have any rest back from als but it's a care and either did I and I didn't want to. I found it very hard to leave aside and I was very protective. Most nights I would never add more than two hours around in uninterrupted sleep. And probably be a bed maybe five to seven times to help a rollover get comfortable whatever else you need it. You just learned a functional lessly. I chose to learn how to use a blow dry as you can tell not something i'm used to doing for himself. I had never used the blow driving the life before and I wanted to learn how to stall rooser she would have done for itself. I never quite managed to get it absolutely right but to get that smile at the end when she looked in the mirror was prices I also got trying to play a make up for her. She didn't really trust me on that and I didn't really trust me self in the mascara group we tried I just wanted roof to look and feel as much let the pre also roof as possible. I have to meet that was a very good cutting it nails. Apparently I cut them like a man. And didn't shape them like she would have done so I arranged for a friend to come and she would cut and pay to nails for it. Again it was all about love dignity and respect but she never complained once never admitted to be then any pain and it was put me in the needs first. So for example the weeks you passed she was covered in two friends back in the uk device with both loss of ones so eventually I was doing everything for it and it really was everything except thinking for it cause a mine was still so shot. So restaurant visits and all that entails watching showering dressing feeding you name it was a labor of love as far as I was concerned and she would have done exactly the same for me. But it was so human acting for. Despite has been really careful we both take it positive for covered at the end of january last year. For me it was a mile cold but for roof it was fatal is it attacked are already seriously weak and rest which resisted. She refused to go into hospital and just as she wanted you passed away quietly and peaceful at home in their own bed on february the tenth twenty twenty three. We were blessed and fortunately we had two years to say I got back. But it still tough to accept. Which you use the two years to make sure I had all the skills necessary to look after myself. I would give anything to a swap places whether when she received a diagnosis. Thank you for listening. Thank you so much. The. Apparently figured out how to make it work so again i'm tony may and that. Thank you for allowing us to be here I am. A former marine and. Went to. I was diagnosed. Seventeen years ago so the exception the role. At place to be a federal. Into amendments. This. It provided the resource. And I will say that anywhere in a. Not only from the standpoint of the life only chair. Which i'm glad to do. The. But without the a leak of. I would never have been able to. Paid the cost. Living with it disease long term. I believe that. You'll be a little bit believed that. To make a developed. In the live. Yeah what we call the powers and cows. The patients are living with they are there taking care of theirs. I got involved with a with you a mess. The. Some shouldn't years ago working on both the clinical at the research. The. Here in london. We're able to take. The. Of those pearls The. Northwest arkansas. I have to travel here to spring seal. In that's very much of a challenge for the family. To be able to do that and so i'm excited. The. So developed less every year. A family living with. Yeah needs. One of them is breast care. Every care is warned. Because they. Yeah twenty four hours. If they need. A break and not just anybody can do what they're doing. But. Clinical ever here in central arkansas and hopefully northwest arkansas. A rabbit to provide that relief. Excessive day to clinical. Is tuesday. This does. You don't know. A lot of. Interfered to. That can do what others can do. For the patience. I believe. And. One thing. That I can do. But the rest by. It would be to drive make sure. In representative I'm on the board hey l. Whether it should research. Or other areas. This regard. Around In shade shaped work that. Which is. I know what you do. It would be my hope they're not prayer. Will be able to articulate you. Over a period. Thank you. The. Thank you center is thank you connected for having us give our our test money here i'm move minor i'm a during the general source neurologist and as janet is missed may and stay with have eluded to the care the workers trading of very complex care of people living with airless falls on a few of us who have the resources to be able to deliver that at ums neurology that's our core mission our mission is to train the next set of. Learner's in being able to deliver that care it's too help the communities becomes self sustaining in being able to deliver the care that's needed for people like mister may people that then others have been patched a by the when i. So my association with with on the mside and initially was to develop research programs for delivering uh new treatments for ls we are really proud that we've been able to establish those. About a year ago lsa told us about this big huge need that we've been missing in the northeast part of this state. Uhm we are janet said that there's about a hundred and thirty people with their less in the state of enough. And you about sixty or seventy of them are served about half of the of the population with the less is being served about forty of them are in that northeast corner of the state. And where is as david sends many of them are having to go out of state to receive their care so it has been a priority to establish a multi disciplinary comprehensive clinic for care for ls up in the northeast corner there are really good neurologists working on this bad from the ms side the ability to provide a multi display team orchestrate the care to take some of the burden off of our patience living with ls. To support the providers who are trying to deliver that care that's what we're engaged in now in again trying to bring clinical trials the opportunities of engagement with research in that part of the of the state as well it is our state it is our mission we're working on we need your help thank you. The. Thank you thank you so much for coming and being here with us mister mr britain thank you for telling the story of your wife. Thank you for sharing all that you share with us. And bring in her to life for us. Cause I felt like I know her because of the way you talks at beautifully about her. Sharing sharing what you share today is really about not just. What she dealt with that it's a love story that I think we all need to be reminded of from time to time about what our purpose here is. Uh mrperiod mays thank you so much for being here for having that courage the bravery to service and the military thank you so much for your service it's because of you that we're free and we can be here to speak freely. And so very grateful for that but also thank you for just a big dedicated a. System that god has you here for a purpose I believe that an I for one am grateful to be a part of that. Purpose that god has for you and all of us here today are part of that purpose being fulfilled so thank you for saying what you said and our parts are with you all and as your moving through what you're dealing with have dealt with and then to the advocacy of what you're trying to do together I think it's just amazing them beautiful i've had a very good friend he went to college with my husband and who passed from all us and it was a very quick and so it we stepped up to be. Dad you know to help the her when her kids moved into college and we were there to move him into his storm room and of course we would have love for of chaff to have been there with us but I know i've expect that a little bit personally and have they lived in torture but it was very difficult to watch a woman my age lose her husband with three kids and high school. Erm and how that faintly had to deal with their father who was incredibly strong and absolutely getting does all of a sudden get hit with this diagnosed system then to see how that transpired in it it let them the kids center wanting to go into medicine. And so i'm grateful for for jeff and for beth who is one of my best friends and she's brave because of what she's happened to do and live with out her husband and. So I think it impacts all of us differently but we're just grateful to be here today and to have you with us and we have some questions and i'm gonna open a questions representative johnson. Senator hammer you're recognized taking out your for any of you that we care to speak to this i'm curious about the amount of dollars that are dedicated to research at ums and or so what would be maybe a goal that would help advance the research and how it belongs with federal dollars that are received just showing it up idea what might be able to be done to help you. In the area of research. I'll start. But every year to go away. The stablished a. It trust her mass dedicated to the clinical and that was the map to me and then. Oh the research add. We also ever endowment set up saying period return that. Spare of me internet have. About rate so on the research side um at the university. The endowments that were established at this time are actually waiting for a chair to be hired to at a dedicated bench research time but clinical trials that were doing or actually sponsored clinton trials of their revenue neutral so they bring in the amount of revenue that's necessary for the support of trial staff provision of care and other services that the trial would. And I would speak to them care service aside the practical side of that is that we we need to be able to get people here to participate in clinical trials that can mean overnight travel hotel expense you notice mileage gas having a car having an accessible then in order for someone to travel to this clinical trials that's one of the opportunities that we have across the nation and certainly here because doctored all these involved in what's called the healey trial right now and we're we're needing a lot of participants and so on a practical note funding for just simply for travel and that sort of thing would be extremely beneficial and chairman have followed. Yes and and I want to open this up to members that are not on the committee to ask questions as well if you're either on the committee or off the committee doesn't matter to me I want to do engage. You recognize senator hammer thank you I mean up to this past session i've been on public health home mileage slave career and and the the thing i'd like to ask for manager I know i'm not a member of the committee but it would respectfully as that chair would consider this as if this group could present or prepare to present either to this committee or whatever the chair chooses have returned choose to handle it what would be a tangible goal for us to consider his legislators and the administrative branch because I know another areas where we have dealt with uh diseases those trials are try mentioning by the big pharmaceutical companies you got to get participants and if arkansas could be a leader in getting participants instead of losing our our families to other states i'd really rather be at the top than be you know following it back at the pack if maybe the chair would consider asking them to present to this committee what would be of a tangible dollar in plan for for shopping at we could use may be moving forward in the in the upcoming sessions they'll be my request ma'am chairman thank you thank you senator hammer yes I would I would appreciate that and i'll test mister mazed get that done easier marine he can get it down thank you. Senator love. Thank you madame share i'm here in in first of all thank you all for coming forward and ensuring your stories I think this is a very important this is one of the more gratified things that we do is is state legislators to actually hear from our constituents in the end try to put something in in place so following the. Kind of the line of senator hammer I wanted to know more about what you are see is the practical gaps I know we were talking about research with you talk about you know. I guess are you not funding at ums but what are the more practical gaps that were seeing were seen r. Also clients and go through in what where can we fill in those practical gaps as it as a legislature. Well you're speaking to my heart there that's what I really want to focus on the fact that for one thing mr may brought up risk what that simply means is we need train care givers that come in and allow someone who is taking care of their loved one to take care of their own health and it's not only this disease that this is such an acutely rapid urgent k disease that we're dealing with they they care for themselves lose their own help and it if they've lost their loved one then they often sign that their health is really declined because they can't leave the person living with all this to go get the regular checkouts to get things you know presenting symptoms that they may have are not addressed they ignore their own hell physically and psycho socially so respect care is a program that we have in some of our states but we don't currently have that and arkansas so i'd like to see something like that look that as well as emergency transport or just that it's not really in an emergent situation but some funding for transportation like I said to get to a clinic for the loved ones who are living with alas is violate important that is what that is the help and hope we have to offer them and so many just can't get into the clinics the cause of the financial strain of travel or the ability like we talked about have an accessible van if you got a big complex rehab will chair like you're seeing mr may utilize is you can't just travel you just can't go out into the driveway of the garage and get into vehicle can come you have to have an accessible van and so there are programs across the nation of that provide for that on state budgets to help pay for that cost of a company who has ex. Then available so that those are two of the pressing issues that I can bring up right now that we would need to look at we would like to look at. Okay you tell me that the number of people who suffer what aliss within the stake is if i'm understanding you are said that you establish a clinic a ums but what you did you say was in northwest arkansas now or we're looking at establishing northwest arkansas currently it's here on the campus of you and this is here in central arkansas yes and central are concerned we do have a coordinator who goes to the va for their clinic there is well here in little okay. In. Are. I don't think the doctor wanted so they're we're trying to establish a multi display clinic in the northeast part of the state as well in partnership between ums in washington regional the there is a provider who cares for a number of people with less in that point that do not they do not have the. Multiple disciplines representative physical therapy speech there be occupational respiratory therapy um near caregiver education resources that's our fourteen we want to be able to extend that uh to the northwest corner of the state as well quicker research is a big component of that make sure that our patience living in that part have access to clinton trials then you know that we have your centrally okay and so do we have the number do we have the number of persons that suffer yeah there's an estimated number or a more here in arkansas seems like a small member of it if you've ever been hit by the analysis it's not a rear disease to you but yeah that's what we're looking at we're not able to do that outreach to find those people that that's another practical need that we would like funding to have a coordinator to go to the areas of the state who don't know how or where to reach out to so yeah that's what we're looking at the incidences to some privilege as high as nine and a half thousand people are living with a less so i'll let you all do the numbers here in arkansas probably repeating a large port has been said because I cannot hear and so apologize if. If I am but you know you got again the planning you got to return. We're blast here central arkansas both of those at you a mayors even prior to ALS a. In north best article so we just do not have. That unit is you were. Outburn is to be able to provide in northwest arkansas same thing that we have here and we got it which you could you are your car you miss now has locations up there. Probably repeating what it's been said but to me you know we do a lot to. The. The. First sales we can't stand late team for opportunities to raise phones like we had. She shoke recently. We raise over two hundred thousand dollars. And. That's great but it doesn't go very. Yeah. To me if we are able to out the service to wear people don't have to go. To spring or somewhere else that is important. The. Thank you could I just add something on that as well the the clinics are very practical. Day to use to build a sitting one room and have the different clinicians to come round to us. Who is unfortunate those days are never the quarterly visit and never good news. Sometimes it might be less bad news. But with a less you know you're not going to be told or by the way you you you're you've got the old clear you can go home. So. It was a very stressful day you knew it wasn't and be good news on the way up there so I think if we could. Make travel time not an issue for people I think that would be a big step forward. And your packet you have a couple of handouts one will show the hundred and three persons that were currently of serving in the location of those persons and I think you'll see the wider out areas the white grey areas where there are people living with all that we we can't have been able to read or they don't know to reach out as so were were in the process of planning some educational outrage with a quadrants of your state to reach more people who are living with alliance as I said anticipated or estimated around but you see those areas where people just don't be and reached this the map that this is to see one and see to the exhibit to referencing so when you're specifically referencing that are you looking at what what's the difference there were twenty one and c to see why is just the estimated person's prevalence rate that we would think the or where the people are and the numbers it says two or eight that's very conservative i'm quite sure it's closer to fifty or more persons living where they ls currently and then c two as the incidents rate where are they been dying where they're living that the distinguished and walk the distinguished events and walk this reverse on the bargain help me understand what that is well that again is where we've held our events for fundraising okay so that taste back to you fundraising so the red is the the. It's where the people. Where you have been at some sort of understand where the were people actually live there were serving right now locks and the events okay got it thank you. You're welcome there many people in the sales we aren't able to reach or have it heard from an aren't serving currently they have to travel into texas for clinic care so we want arkansas to provide that care. Me with some of my ignorance like i'd obviously don't know what's involved and you know the testing and stuff like that but why can't we have doctors go to patience and we partner with like nursing home to have okay space where they do this kind of stuff why do they have to come to little rock or whether they have to come to northwest arkansas. So take their question testing for a condition it less is is reasonably specialised both for the level of skill required from the condition who's making the diagnoses and a lot of times the amount of of capital and equipment that's necessary to provide the especially as type of testing the test thing that we were talking about a lot of it can be done elsewhere for example imaging can't be in others imaging centers I can do more right skins at multiple places but the the real specially testing is through electronical fee which is a test of putting needles and muscles trying to make it diagnoses in a lot of times what we see is the average delay from a patient for starting to have symptoms they've gone to multiple providers they've been told multiple different things until they find their way. Two are a center bike where mister me was diagnosed to the university of our concert to the va where they end up meeting within your moscow specialist to know how to pit put the picture together so it is uhm so if there was a you know reasonably efficient channel of us putting resources somewhere else to make the diagnosis we would do that it's that people are having the go to multiple steps to just get to the experts that would be able to make the diagnosis. That is a part of the problem so this isn't something like the equivalent of a manor grand van where we could come to people this is it's too much to do something like that exactly so there's not a screening test that can be applied with a high throughput for diagnosed being less or even tinus of more common conditions like parking since these things that causes a lot of delay seems likely so processive elimination so my wife had a number of symptoms that we just didn't. Put down to anything like this she thought she was just being a a manipuls or sixty year old lady and that swap she put everything down to the doctor first tested to see should a third fire old issue. And then that's when we had so it seems like it's a process of elimination eliminating other things first and then not what's left on the table we were fortunate at the day it didn't take very long book in on the length of time it takes for some of the diagnosies to come up is just incredible the process of diagnoses process elimination. It takes longer to get there that it needs to. They're too yeah it's bullbar which starts. Area. That's her progress. And then they start in the span. It affects the lower body As I said i'm asking. Well this is education for us is. A point in which we need to make an ask. The. Is it just totally education are weak messages about right now making the asking quite honestly for forty for people don't mind making that. But yeah misremains I appreciate your commerce something that I think I think we as legislators were policy makers were trying to find solutions so the first step is to educate to understand fully what the need is which is what you are laying out today and this isn't a one and dine it's a process you know so you have lawmakers obviously here all of us are very interested to see what what it is that we can do and our task would be for you to go back as a team and figure out what that is what that looks like so we task you the marine to to leave the charge and and to figure out what that is and how the state of arkansas can compartment to really server citizens because at the end of the day that's why it all of us are that are appear elected to do is what are passion is and and we all have a passion to serve the citizens of the state of arkansas to the very best of our ability I think we all have a passion to be as effective and is efficient with tax payers money as we possibly can and if there's a need we want to see them that we want to fill the need but we also want to lead and and we I think we are tired of sometimes being in the back we want to leave we want to be able to meet those needs we want to in particularly those of us that represent communities that are poor communities that are rule. We understand those transportation is she is very very well and it's really hard and there are passes that we go to and fundraised just that we go to locally to help raise money for families who are going through incredibly tough illnesses and so were very familiar with those events but I think collectively how do we support what you mess is doing how do we understand that dynamics I understand I think so importantly that you weren't a one place where you can be and not have to go here and here in here in here and here for all the different services that are needed for a patient with als and how how do we accomplish that. To the very best of our ability and understanding where the majority of those patients live and so i've had you know you've identified a need and yes you're right there's there is an asking you should be bolder that ask you know and what that is and be as clear as you possibly can because we are engaged in creating solutions that's what our job is but we have to work with you and partnership with the executive branch with all of our colleagues but also with you so you know I think senator love said it probably better than anybody else this is one of the best things that we do and one of the best things that we can do is to hear from our constituents and listen and learn that then apply apply what we do in order to try to work in partnership to create a solution. That first all I want to apologize to learn I get engaged in this conversation and I know him in his line of questioning did you have another question that you appreciate to me and you know that and you have a few comments in questions that I like to make we get away this topic you know you've been here an hour and i'm grateful for the time isn't is mister burning is that a process so one thing you said that I wanted to come back to so I think what I heard you say is is it what the challenge is you had is when you office diagnosed she was going to need some durable medical equipment they would enhance her laugh in the gets and challenges getting that paid for is that correct yep so we were very grateful to the alice association we we rated their long closet quile up but it wasn't custom stuff so it was great as a holiday so it was it was really there the insurance company were up were okay but they didn't seem to understand the urgency so let me let me interrupt you there so you said the insurance company were okay that you had commercial assurance that you've been paying for paying premiums for and presumably the insurance company should have covered disturble medical equipment is that a fair statement yeah anything over twenty five thousand dollars they will not not concern about the cost of bit but presumably they should have covered it right you've been paying your premiums and if you were to try to to any view if you try to say what really improved the quality of your of your wife soft of your life mister may live in with this diagnosis what's would durable medical equipment would that be a key element I am pretty quality noticeable but I think I think what would have met the differences if I could spend time looking after ruth and not trying to find energy to fight with certainly and I think it was the lack of. It's the lack of awareness of what also was about and why we didn't have time to I don't want people I don't want people to think that you should just shower people with you need a wheelchair you need this not the point i'm trying to make not the point of trying to make it all but certainly I think I think that if you're a person paying your health care premiums on a regular basis the interest company should be able to cover your benefits and it shouldn't be something where they're throwing up obstacles in the way especially in a person whose time is limited yes correct doctor doll isn't that correct and would you say in the next year there will be people in arkansas nearly diagnosed with a less there are and the issue is prevalent across but you can predictably say that in the next twelve months we're gonna have people in arkansas or diagnosed with their less yes in and would you say that's that this is a new disease or spin around for a while it's been around for a while insurance people so so it dealt to my understanding insurance companies have actuaries and they plan accordingly based on statistics to pay for whatever occurrence is happened to come up in the way they do as they click their premiums that should the premiums based on that and then they pay right you based on these actually so granted this costly right would you say that in industry that posted over forty billion dollars in net profits in the first half of twenty twenty three is adequately planning in their business model for these kind of expenses yeah so I would agree so just wanted to try to bring that up over here and just make the point that while there's certainly a role to play here in our government and what we do I think there's also and need to recognize that we could do better holding accountable some of the people that are. Responsible for you know providing the equipment for the people that are paying the premiums we were told to buy somebody that because you got als you need to get what you need before you need it. You don't always which is a nice principle. But you know suddenly we needed a van and a wheelchair and so it's it into so understand what you did to solve that problem is rather than wait and wait through the process of waiting for the insurance company to pay for the equipment you paid for it out of pocket I agree to underwrite it so that the per per mobile the manufacturer would actually make it cause they refuse to make it until they knew who was paying understand why I said alan the right it's with the insurance company don't pay you would have been on the heart I would have done so I think you appreciate the time in the assistance question one point to this is is often carried the latest care denied we you guys have championed primarilizations for our state will really appreciate that but this is a burden on us on the providers where it's not just david in the fight it is me as well and often the resources that are there that are supporting that fight or actually invisible to to many other players in the in the in the health care. I just wanted it absolutely I think that's why I mean it's a great time to check in and off in the educate as to why we've gone down the path of prior though is legislation i'm married to physician mountain view arkansas small town doctor who was on the phone trying to get a protherization to treat his patient who had limes disease and was told there are no such thing as tickborn diseases you're just a hill billy country doctor from arkansas so that's what led me to write a bill so because you're exactly right it's so frustrating when you are trying to treat a patient help or patient help a family and you're just getting told no we're not gonna let you do that you know it's like trying to build a house without a hammer you can't do it you've got to have the tools necessary to be able to do your job effectively and you took an oath to do this and there and the level of empathy must be there so I agree that I appreciate represent thompson going down that line of questioning represent of garner you recognize for a quest thank you chair under these gardener I live in fable i'm on the board for uams and for washington regional if worked in forty years and non profits in in northwest arkansas my question for yall and I know that first of all thank you for being here I know you need to get back my question is how are we working together to make sure that folks are getting what they need and what can we do to help that process i'm there my cell phone is on the phone at this on the website there's several other watch of northwest arkansas legislators in the room and we're all willing to help so hard me let me know what we can do to get everybody together I me it makes sense that arkansas support and also and certainly washington region with their narrow unit all of those things we ought to be working together to make sure better administration as well. We have to be working together so please holler back at me I know you probably can't stay for the rest of the meeting but howard me and any of the northwest arkansas folks and because one of the things that that I think everybody needs to understand is what we do in central arkansas first I think but with the prevalence here in northwest in northwest benefits everybody across the state through the acs and through through the other uams program so it benefits all of us to to make sure that these program serve are working well so thank you very much for what you do and. Please call me. Thank you yes senator hammer they can make charges too quick once on the hand out that she gave us down to bottom I noticed that you'll commit a two point two million were you all the leaders in the development of the struggle partnership with other universities research centers or can you just unlike me on that real quick. You may remember that I spoke at challenge. And that raise many many millions of dollars a lot of that is going toward the money needed to develop these new drivers we have a research department that's very robust and that's each research project that is approved for us to help participate in funding okay so it has fda approved the struggle work what's the process where we are that is the latest drug that has been approved and talk about co payment were fighting every day for this wonderful drive to be utilized and how many of your patients sit your reference while go i've heard the testimony about private insurance what about our every patience on medicaid most patients who have also high percentage ninety percent or more have medicare because it is a person of illness and they they are are exempt from the two year waiting period because of the urgency of this disease so most time medicare and then are a co payment comes along with the act but yes most of the medicare that would pay for this but again with the co payment coming through private insurance. It's expensive and their fighting paying for that. Okay. Thank you i'll also but also point out we do have our our state employee and teach your employee insurance that is also something that needs to be looked out. All right we have no other questions again thank you so much for being here we are so grateful for all of you and am just just thank you for letting us be a part of it anter god bless you and we will keep you on our prayer sand dab thank you again for your service to our country thank you all for your time we really appreciate it senator urban thank you thank you. Okay members thank you so much for. Sticking with a three. And that will bring up I will go to item d. Camara. Good morning i'm mary franklin director of the division of county operations with department of human services. A mitrails cheaper stair dhs. This rule is to implement act nine twenty three of twenty one and it's related to our long term. Care medicaid program what this rule does is allow individuals who are being served who are not in long term caremen are being served in our workers with disabilities category these are working individuals who have disabilities and this workers with disabilities category helps them with medical expenses while they're covered but these individuals won't be able to create and find independence accounts in those assets will be disregarded if later after they retire from working they need long term care. Those assets in that independence account will be disregarded for the eligibility determination for this be happy to take any questions. The. Okay thank you are there any questions as the senator boyd who recognized. Right right so again and II think I understand this but I want to make sure it's been a little while since i've thought about this category so these are people with disabilities they're working we we set it created away from them to save money. And then when I got a long term care that. Amount of money you know is so basically were rewarding a recognizing that they're going to work rather than choosing to not work that unfair way to say it possible yes sir okay it does help promote work because they are allowed to accumulate those assets. And then those assets are disregarded for the long term care if they need that post retirement thank you thank you representative miller has a question. Represent a miller you recognized thank you madame chair thank you all for being here could you explain to me and the committee a little bit more. Of. It's my understanding. That the. Working disabled medicaid which this is tad too correct yes okay they're there is no income limit our asset limit. In the state of arkansas so there is. Owned income is disregarded in that category there is an unearned income limit which has to be added under the ssi individual payment amount but the earned income is completely disregarded and and correct there is no asset limit in the workers with disabilities category. Right so you're talking about the the savings account. That you are working on would be for unearned are earned in well what it would do so you're right someone in workers with disabilities we're going to disregard those assets anyway for that category while they're in it but if that person later needs to go into a nursing facility that that independence account that there may have been funded by their retirement account benefits through their employer. That will be disregarded in the the ascent limit for long term care for longterm services and supports his two thousand dollars so very easily someone who is working is going to earn an accrue more than that towards retirement but by disregarding this independence account it allows that person to still continue to receive services if they need higher level of care in a nursing facility after being served through our workers with disabilities category. May have a follow up okay so and for another thank you very much I was very well put for another point in clarification could you explain the same obviously working disabled. Major working now. Retirements like a foreign concept to me but there may be others who. You know who we were going to experience retirement what. Anything that you have. That you obviously when you retire you're still going to made the medical services so are you having to put all your banks great all your eggs in this one savings account basket. To do retire or how does that because I mean when you retire you're no longer. You no longer getting though would be on car qualified for working disabled if i'm understanding that correctly that that would be correct workers with disabilities you do have to continue working to be in that category but we also have other home and community based you know I said if someone needs to go in a nursing facility but if you there's also a home and community base wavers like ar choices and this independence account would be disregarded for those other TSS categories too. Right okay so i'm not like myself clear in our apologies. If you are if you have worked. And you've let's say you've contributed to a retirement account you brought that up earlier. When you stop working. Now obviously you're not on worker working disabled medicaid anymore so now you would you roll back on traditional medicaid for for many others at which point. You're set. You would have a subject to the asset and income limit. And less everything is in this. Savings account is that the way that works or is there a different way of transitioning. So. There are. Other you know we would have to follow all of the asset rules related to those other categories but just know that in the pin its account assets would be disregarded there are some other disregards you know certain burial policies certain amount there there are other asset rules that will come in to play that are already there but in a regular savings account that was not designated as an independence account then that would be accountable resource we would have to calculate that and see if you were under the race or slim it so I won't say. It's in all or nothing you have to put everything in your independence account because there are some other resource disregards but yes regular assets that are not. Excluded then we would count them using the normal asset rules. Okay thank you. I think i'm following what you're saying like then you are just you would never want to retire you would just want to continuously work. Because then it would kick you into a different category and all the assets if you had been successful would count against you basically exactly yeah okay yeah I think and I mean II hear a see that point I think at you know exclusive from this rule that is something that we might need to look at because we don't want to penalize me you know we don't want to penalize them but if they've been successful or whatever but that might be something that you could work with representative miller on as a policy issue a outside of this role sure we can certainly have bringing up a really good point that I don't think i've ever thought about but thank you. Thanks thank you. Yeah. Representative in it thank you madam chair I have a quick question I have a small disabilities and no other people other families also are weren't you go to more more about this worst this on the website so I can look at it more intently. The workers with disabilities program aha so it is in our um online policy manual and I can also just send you some information about it but it it it's in our policy manual online and i'm not certain that we have a specific like pamphlet or informational sheet about workers with the civilities but that is something that we can also put together okay cause I think they'd be helpful is my son starts to get older and become adult so we could help with his planning. Thank you thank you are there any other questions seen nine the review i'm sorry this rule stand reviewed thank you think okay that next one. Is a department of health thank you. Go ahead and take your names for the record and you may be match your more department of health. Nothing nor rome director are the best. Okay so we're here about the adoption of language period to act one three seven of twenty twenty three unaccepting relevant and applicable education of uniform uniform service members and their families for automatic license to be considered we have gone through a public comment period already and did not receive any comments to happy take any questions thank you are there any questions on this room. All right. See them thank you this rules stands reviewed okay thank you thank you for being here the last item is just a. Ispa that I have filed so without objection we will adopt that isp and is there anything else that comes before our committee I don't see any members I really just don't appreciate your attendance. Attendance and just attend of now are meeting today I thought it was incredibly important and I hope people will go back and watch it and share the testimony that was given today with that we are adjourned.