Public Health, Welfare and Labor Committee- House and Senate

Move to their chairs. Present about being here today. The. Looking forward to a good meeting. I don't have a readers today that's going to be a problem I may have to have somebody stand in the back of the audience and hold the september I can see it it looked like first to around the agenda is the discussion paints panda by the pace foundation so if there are folks from the pace foundation that want to come forward to the table you just come forward and state your name for the committee and you'll be recognized present to come to the table here and if any members of the legislative task force want to come and set at the table you're welcome to join them. The. Any members. Oh you know i'm said the time. I'm filling in is the chair right now for senator and i'm trying to make sure i'm doing what was. So the other members of the pants pant a task force here present. Yeah please help me out senator hammer. Center hamilton recognize thank miss chairman miss chairman this is cover transitional meeting for the pan and pandas when this originally started we formed the commission representative various members that were called from their respective areas of interest in expertise on the subject. And this will be the last time of which the commission will meet and it will now be passed off to public health which is something I talked to senator urban about. And what I talked to center urban about was that if there are members here of that commission if they would be allowed to come up on this side for this portion of the agenda so if they wanted to ask any questions as historically has been done and then at the completion of this item agenda and that they could be dismissed because the rest of the agenda doesn't pertain to pay interpanters and this will be the official ending of that commission and it would always give them a chance participate in discussion given long history they've got i'm working with this with this issue is there ever thank you so much for the clarification I understand completely if their members of the pants panted commission in the room we would ask you to come forward to take a chair as just as if you were a legislator take a chair any name that's not vacant and you can come forward and participate in this portion of the meeting as if you were on the commission and you're able to ask questions of anyone presenting is anyone on the commission. In the audience that was come certain participate in their fashion. The last summer I was that correctly sitting yesterday thank you all right thank you. Sir you recommend a state your name for the committee and present. My don't give me okay my name is paul ryan on the present of pace foundation and we've been working closely with AM s children's hospital and the legislature are the cpa center that was set up four years ago I believe. And said hammer assessed the common cannot update the committee on some of the advances that we've had and the united states and now in europe pays foundation is basically a non profit that supports the medical side of panspanis in the united states so when we started about a decade ago there were really just two small clinics in the night states that cannot took kids within a small radius one amount uses one and california since their time with we have I think thirteen now around the world as it turns out one in canada and one coming in europe there should be slides that I sent if somebody could show map maybe of where the clinics are may give leaves in I believe we have this in our hand out we hand out so okay to have a map there it shows the clinics. Okay good thank you so you can see what we're our attempts were to try to get regional coverage in the united states for treatment for pants pants kids because it just didn't exist so now it does your folks are the most south I think there's one tend to see that the registration some of the positions in in two son the center of excellent there and then just so you know the center of excellence in the arkansas the only second one in the world as the center of excellent switches the finders treating pan spenders said a high level including a vague treatment and also educating students with that including grand rounds and their own campus and state and then doing world class research and i'll get to the world class research projects in a minute. But that's kind of give you a broad scope of of what piece does and has been doing we we started basically with meeting with the n I h cause are we noticed that the nage had not started any comments actually nobody had. For this very difficult disease and so that was our mission from their one now or down the path of all so creating a lot of research projects cibig trial that i'll talk about administers probably the premier one cause it's also worldwide and as testing I affectiveness yet on this disease so I want to think a couple people I start rather than end with that one of his doctor rick smith this house this whole thing started about four years ago when doctor smith that I had a phone call and he really wanted to support some but the advisory group which had been set up by then and send it her hammer and represent a warren had wanted to have a clinic here and as we developed it rick smith and I talked about having is this sentence and that's why it's called what is called today and functions away at munctions it's pretty it's a lot more elite I think that people understand that I think doctor panned in the back here I may call him up for a second they kind of give you a current status of your center here but i'm really extremely proud of it and he doesn't know this yet but we're going to struggle funding positions from around the world through here to get trained because they do such an excellent job of reaching out to the primary care doctors in the community which is obvious bend the failure of this disease it's a tense the specialise and little circles and it shouldn't be it should be spread the primary care folks with a center treating more difficult kids and problems so that's a concept behind this one I think doctor smith obviously wanted to thank senator hammer representative warner they've been champions to this whole thing a you folks thought of the legislation they. Adopted that I think there may zero negative boats over the two or three pieces of legislature that just a huge credit to legislature in arkansas understand the problem and the pain it causes families and to get a solution that just kind of a common sense solution and you've achieved that at a very high level I don't think it will I know since we helped legislation many other states I know this is the best state legislation that ever written because it has levels of protection for not over prescribing a bag as well so I applied senator hamburg representative all you folks for adopting that and in such a unanimous way I really quite affected so I give you a idea in the clinic she'll see on your hand outs there's one in canada the sick kids hospital toronto were now developing one in goose and burg sweden because of the south part of sweden are to major educational center and sweden and we just had their team out for a three days in arizona and for training so they're color on that guide path I would get somewhere in twenty four years clean extra not super easy to form their multidiscipline which is really critical so an another which they're multi there like psychiatry as well as well neurology are rheumatology and minorities involved so you'll see that that kind of spread is starting interest of the world in what we've done here in arkansas and arizona around the country is really high there's a lot of discussion europe used to be about it is right now wasteland there are no clinics it's hard to imagine that and we have now pretty good coverage of the us but I think that interest is showing where people like arkansas having an influence around the world not just here the united states. I think it the thing you have to remember in all these clinics which is very unique in the world and medicine is all adopted same standard of care in other words they have the same input forms they had the same procedures of how to treat a kid had a diagnosed security and that it was done on purpose because if you think a little bit forward federal legislation or most laws are going to want to conformance to a certain medical procedure to cover a very difficult disease as pan spanish across the hard part issue folks probably have heard through all the hearings there is no like blood test that you can run right here it's a it's kind of like if I explore every possible disease it can affect the human brain and that's not it it turns up being passed in panthers so it's almost a diagnosis of exclusion that's why it takes a long time to see these kids and a multi dismant team to kind of question them to go down that long path of determining whether they truly have pan spanish. So I think on the research settlement explain the ibag trolley to you a little bit so ivag is a drug product blood product that's a extensive reasonably expensive problem we tend to fifteen thousand and application most of these kids when their severe ten percent of the kids are pants patterns get ibi and a normal environment at arizona we're down to about five to seven percent I think doctor panter runs about the same rate because of the treatment they give the kid before they have to get to an ibi giller was quite superior to they cannot lower their percentage of kids that get these expense of drugs and the second thing is ibager is a world class game changer at nobody knows why choose i'm not a doctors but even they can't explain it but it does it this disease and largest the brain essentially so it is you can't see you have an infection and then it triggers this reaction in the body nobody quite knows what that is but it is definitely there then the largest kids brain and when they change it is overnight typically or rename something between three days and within a month you'll see in the get office and bottom you've got a different kid and their violent and there they could hurt themselves again her other people when it gets to its extreme that trick therefore is to catch it before that happens. So where simple antibiotics and some and said like not even to length of thailand all they they can get better if you catch it early if you don't catch it early and they go on for a year or so they can develop the repetitive flares they call them with a brain they get a cold for instance something simple it it kind of leads to a large man of their brain and also now I have a flare and these kids can have six seven eight nine ten players and they just become uncontrollable you can't get him in the car you can't get him on an airplane you can't go shopping the dominator life is a family it happened to my family many years ago and that's what got is into this particular disease in disorder so that's kind of the severity is the ultimate treatment if you can't get a kid so down any other way and this test we went to the all the farmer companies she know it states that would you run this in a large enough scale the fda would approve it and therefore it would be mandatory throughout the country you wouldn't have to go state by state and pass lies when you have done here. And we finally found a company that would do that out of the eight people I think in the united states that make a vague and they acceded to that about two years ago what is taking that long to get all the fd approvals now we're about a year into it. And yep the scale of sort of thirty percentage kind of enrollment of the candidates which just recently normal pace and doing well you guys I think i've had four five kids already in that trial you're one of the leaders in the country of getting kids in that trial and it's double blinded so I can't tell you if it's working but just from experience over ten years of seeing it with kids it's working that's not a scientific survey it's just the opinion of an old man so it's but I think it's got a show that this is good to assure the fd approval and therefore families could get it at their leisure rather than go into the pain that they go through now to get it so i'm very excited about that it is both in the united states in europe which again is a massive change you don't see many trials going to both continent there was our way of kind of getting convinced that the europeans said it's a real disease that needs to be treated which is. Sort of behind the united states by a decade in in its recognition treatment of it and then the research collaboration I tell you a little bit about the. I'll give me an exit out of spread it is we have two universities and sweden and four in italy we have six here so it's going to be a dozen major university is route the world that is running this trial it's about its high level it's called level three trials as high level swell for works it's immediately approved by the fear and then we have a research let me cannot cover the second excess the study the study is basically a research project at a very high level we've also done a couple the question can it comes up everywhere I go and give talks about i'm sure senator hammers had this strong enemy in times how many kids have pans and pants the chili answer is nobody knows the sort of half answer is we funded a trial of study of three universities guess what you run out of them wisconsin was one of my dartments up in new hampshire as one of the reason we did the three they all had a clinic say it conditions for new about this disease I understood it and it gave us a good demographic of the least the middle part of the united states so we had different states different ethnic make up some backgrounds and it was done over two year period of time retrospectively because we were gonna do it prospectively another was going forward but they pan democrat and when that he had the kids stopped going to school and all the sun when you do that kids don't spread disease amongst each other and all the son you don't get as many quite as many sick kids the the devastation of metal health has been a parent on its own but I mean just from a flu stamp pointer strapped out stample. So we did it retrospectively and it came up with numbers that were in what I called the rare disease category a rare disease in the united states is two hundred thousand people or less have this disease the reason that to important is because federal law I think it's either sixty eight seventy three they passed the rare disease act if you can imagine barbara companies and medical companies don't do research on things that don't make money there's no point that it is a business so they're rare disease act was a way of saying it's certifies drug companies to do research on rare disease in the patent relief there's fees relieved as quite a bit of money involved in making a rare disease finding and then doing that so we're in the middle of chatten with the fda rate now but one of the important studies is going to be the study by elen wall that you have in front of you second eight pages ellin is the chair person of periodics at the university of wisconsin so she's been in doing apply she's as retired but should definitely twenty five years long time. She's one of the really great infectious disease doctors in the country and then doctor panda was in doctor rainy where the people here that did it and then couple docks and darkness doctor made and doctor morris did it up there he's the head child neurologists she had top level department level people team doing this study. And you can see in that finding and I want to make sure you understand this they found like one at a twelve thousand kids now that may give you a little bit of a heart attack that was you know it's up that many kids it is a lot of kids because we're talking a base of about probably seventy million kids in that age range in the united states so i'll be extra plate the number is important but the most important thing to remember about incidents rather than prevalence incidents as how many kids you'll find in a year another is new cases in a year prevalences when you take all those new cases and adam together from the age of like two or three to eighteen how many have in the united states is still a very big number public well close to her thousand or more certain it's not rare in the sense nobody gets it it's rare in the sense of defining it in the united states population terms as a hundred as two hundred thousand or less and then that gets you availability of doing trials on it that we normally could not do the ibig travel was a result of that so I just say you understand when you read that report incidents is not previously is just once one a year snapshot but I kind of estimation of what you would have numbered children. So I just will make sure you guys had declared when you're ready going forward the research is going to start getting most of our attention we may start one of two more clinics in the us because we find them regional I want doctor penalty come up in the second kind of give you two minute update of your own clinic but send her hamburger and I had for a long time talked about making sure this was a regional clinic and other words you folks would get missouri oklahoma other people from around the united states this would be the centre kind of macca of all the information that comes out about this disease and how to treat it on an on so at that that all comes out of here it's the same information we're disseminating through the rest united states. But I think your group here is much more a better concept of kind of educating the general public as well as primary care folks which in fact will be the answer to this disease is making sure that your family doctor your family are your school nurse recognizes early take care of it early in really not even have to come to the center to me honest with it that's our goal in arkansas that works pretty dog on well in arizona works pretty well the two centers the rest of the satrick china are catching on but they don't they're clinic gets backed up with primary care problem sees that a a normal family doctor could remedy so it's part of dr panda's job he and I talk probably every week about getting the information out to the primary care folks at hole this whole focus of the advisory crew of you guys of all those laws is to get the word to the primary care doctors that's an absolute the sensity and when you do it works it started to work here very well you have a nurse that's incredible at that clinic who it makes sure that when she gets calls from other states she kind of goes through routine and they include that family doctor in the battle plan against what that kids going to go through they don't just say here we're going to do this they hand mom and data plan and the primary care doctor for that family is has the exact same plan everybody executes it together I love the way they have adopted that and they're at being successful with it there's the last time I talk about is it just want to give you gato can some information a little picture in your mind of how this thing works. There is a theory and medicine call their got brain access another wage when your body says I don't have enough sodium it says go eat some salt it kind of talks to each other that's the theory II believe it makes it common sense. And your bet brain reacts on that will the same thing happens on the bad side you know when this kid in their got something is going on that creates these antibodies over and over and over it's your body does it repeat and when you get in that state of having this thing being in its your head with no relief with the ivag relief from that you're gonna have episodes your flares and you're going to act not normal and i'm pointing that money so the gut brain access says let's go study the god so at the university bears on every two years now we took a some twins right now one has pants went unhappens they got kind of a nice charting of the gynomics to be the child I was cancelled with chemicals do I have and the kid who doesn't want chemical so I and they're finding some differences. As cool now did you find that cause i'm a simple hender irishman I tell you that's nice now what do you do home if you don't understand what the microbiology things in your god are doing and talking to your brain do you I can understand how it goes from here and flares your brain why does it just give you a sore elbow you know some other action so the simple thing again for simple people like me is to go get some money and research it this gutbrain access because we funded the arizona effort they're really good at microbile we have somebody in the back of me your audience who is really good with the brain that doctor panda you could come up for a second i'd appreciate um so pant is why the world class guys for neurology in it you have in here in period he's brought is very common sense as well and so I trust him a lot i'm when a developing now is I want a brain access right research project and I want the brain and they get people to be talking to each other this is a revolutionary concept in college is ladies and gentlemen they do not talk to each other they are silo all the way through I invented it I want the pattern well not in our world they that these kids are suffering so badly at this little silent thing doesn't impress me much and I and I don't think the gains on this disease have been well enough to since discovering one day late nineties you said there was yellow thirty years and of not making advances not here all the great roofs who should I and I think that's great but in two years try to figure out who's going to find something that finds out what they call a biomarker another reception you're chemical make up this says this guy has got you know I bent jean fourteen seven a sex and that you need and when that you need doctor prantice can certainly explain about it I just did when that's unique though now you've got something where you could bring the kid and run a blood test or a year and test. Or some panel tester will tell you they've got this unique marker and then you treat the kid for pan's band as there's no doubt they happen there is no doubt the process now that we've developed will will help that but it also other identified other cures that may make it either not effective in your body you've know you're producing it it could stem the negative effects that's the end goal and I want you to keep better your minds to remember the term got brain access appropriate place every disease as set of a riving now but I think it's important we go after it and this young man to my left is going to be one of the leading function in the brain area so we haven't talked about the sake of a light but congratulations you just joined the club so he's gonna be the he's going to be in the guy takes the little to silo to be honest with you because we're available the university's error unions for insurers own a dartmouth of all said yes we're going to go to tackle the same together so it's not just a an illusion or a theory so I salassing on what I talk about but I also wanted to thank you I especially the center hammer who we've talked a lot over the years sometimes in the middle of hearings which back i've found a entry in but they would like some they wanted some evidence of opinion some data on the disease and that he's a delight to work with an are really really. Huge app are kept for children's health in the states I just want to shut out to him and he and rick smith they think of the two fog same and represent warrant either three people who I think deserve the credit for this center being here and you know in pace you have a lifetime friend we help we help starch it at the birthing of it but I think we want to just continue on his partners to this thing and they were that I wanna thank you very much I want to do should doctor panda who would you do me a favor and kind of give him an idea now that you're clinics about four years old will do that and just once I can thank you we have a question for you oh sure i'm sorry senator love actually has a question for you but before I go to him really want to thank you and be in here being a part of the helping as gets started listening listening to and which is what they did with our constituents as they listen to their constitutes and then they are like okay we got to go to work and help solve this problem which I think is great because that's what we do is I mean that's what you all do is clinical and physicians is okay you know present the problem and then kind of apply that that reasoning then that analytical thinking in that clinical skill thinking so saving the problem and so we just appreciate it it's been it's really been an education for all of us but at the end of the day we're just very very grateful to you I apologize I was late but am III I love your and you talk about this let me go to senator you're recognized think you made insurance since this is cut in my first introduction to pay and so i'm going to kind of air some intro level questions to send some is is paying something that kids are born with the acquired I mean like talk to me just briefly about about there. Can I answer yes go ahead and answer going and a state your name and then go ahead and answer that so yeah so my name is doctor who opened in I go back doctor and not because they're understanding there's just many this happened to i'm a pediatric neurologist at arkansas allowance and at um as to do answer the questions and it lower I think it's not something that kids are born with it's something that they acquired to deal as part of the indigenous infection some kids are just brought to the whole of these symptoms right after they get some sort of infection but we are looking into there might be some generic greatest position that that makes sense at risk to develop this symptoms and sit under the disease but this is not something that actually partner is not like a genetic problem at the appointment okay yes you are so the it's mounted so I would say this so why why pans what what is what is important about pan's versus I guess any other disease or are we we have what why why pants so i'm available for some if you notice your center is called the post and factors auto municipal up at their rate that's the acronym of cpa so children's post impact is so it happens after an infection trigger something in their body so they're born with the something right or it may environmentally have gotten something and so they get the flu strept through and that that disease then triggers the activity in your bread that goes in and flames our brain so it's kind of like you ever heard of you know breathing fever remain favorite kid gets it and they they weren't born with that they get it now it infects your heart you go with the cake you had a fever that had went in the tax year heart doesn't make any sense well this is kind of the same thing it doesn't make a lot of set while your brain nobody wait knows why but whatever that trigger is you want to capture but more important you want to tap. Sure they chemicals that all the sun go through that what's called the blood brain barrier you're supposed to start that stuff goes through there anyway and impacts your kids ran out of the blue so it's it's a very sudden disruptor of human life rather than something you can see at birth or they did those tests that they do it but that doesn't happen like that it's more caused by the infections called post infection so if you look at automatic separate opinion I just mean your brains fall them think about that but post infectious is the critical part you're not can I born with that disease it it gets triggered inside your body. Just want to add one more thing why is it pan spent as well so much focused on this to add to the aspect I think it's so much we do know it exist it's really but it's so much under recognized and it needs a lot of are very nice in education among the physician committee and also everyone i'm to actually diagnose them promptly and treat them to help them lead a normal life I think that's that's another point wait why is it important I think pandora said something really important they're called under diagnosed so when you folks read that study the old walst a panda as part of it so he used an expert in the US ever have questions but you'll read that the first part says you know here's the number we think it is based on our research and which is actually looking through files by the way. But the second part to remember is that whole second party reports say why it's misdiagnosed why people miss it so we're kind of saying in the report american medicine is so poor that it went to kids come in the average doctor doesn't know what it is and they send them down really bad passline psychology drugs that really kind of check and change them from a really valuable kid to somebody who could have problems in future like because they're getting the wrong treatment so the part of the scary thing is you need to figure out what it is you need to figure out how to diagnose that that's why the spiral market is so important to find cause the kids can get really messed up as individuals if they're down to bad path of getting constantly getting they cannot drugs the situation in the corner of school room and make you quiet that's not a solution to this problem so when you're read the report can I be aware of we're trying to cram everything in there that makes it hard to have a good number because it's so misdiagnosed you can see it that you don't know what exists you don't even ask the right questions so once properly diagnosed the end we can get children the correct treatment. And then they did they just recover. Is that is that what you're saying. Yes if you treat them if you get him on time and if you do the proper treatment they should recover completely okay thank you thank you member thank you and let that's been the purpose which went behind senator hammers pans panda toss force which i've been a member of but it's really just about which created the center of excellence. There and really as they stated or trying to make sure that we get the word out to primary care physicians i'll across the state particularly because otherwise ampediator but there are the ones that are really seen you know the first stages of the and if we can get them into the center of excellence retreatment you know the recovery is there and so that's really the path that we've been on because really not a lot of people knew about this and I mean I would just I would just say from my personal experience and my my am. I mean are our bodies are all built differently you know and and it's not a one size fits all and that's what makes the particularly so incredibly challenging. And and i've seen these types of things happen in other other people that i've known personally as well it's not pains pander but it was like an extreme reaction to that her body developed because I covered and had an auto immune response that completely depleted her of b twelve and she got parallelized from the waste down. And then had to work to recover and can what now but only with crutches and this was a d one athlete when she was at eighteen nineteen years old is when this happened to her so is it she was a soccer player so I mean it's just but but whether speaking about is just real II mean advances and technology clearly has allowed us to to get where we're at but the I mean i'm sure before this was just wet and treated so so is there some type of continuing education there are our prominent care physicians are receiving or. I like them speak to that. So yes we are as part of the clinic the program we are doing at this case in the institution also outrage to the pediatricians and when we get a referral or when we talk to if someone calls as a family we actually talk to the period their primary car providers provide them education broadcast and even not actually a treatment to them so that maybe we were able to help them even before they come see as he can you instead this protocol and like the treatment for a call and they get better in the by the time they come see if they already better so yes there is educational programs going on and we are trying to expand that to also even further and doing more frequently and there are a arkansas children's infectious disease group is also organizing a local instead that it's a regional simple sim for a period and we are presenting something about penn spanish in that okay and that a conference as well so there's a lot of foods going on and don't go and so if you look at the difference between this clinic and just read your clinics from the country there's two main things to cut a room or one is there multi desk on other words different practices in the same seeing the kid at the same time the second one is all the work they do whether it's taken the kid in or or handing him back to his parents saying years our solution that average the path they they give the exact same information to the primary care doctor so they they now form a team with their primary care doctor to fix that care and that's really what's critical about this this clinic the second half a went doctor panda does and we do around the country if there is supposed to be out working with in a grand round and other roots grabbing a bunch of a pediatricians or neurologists or this subspecial sake interest and having a talk with them have a chat you know here's what it is your you guys are going to see it let's talk about it and invariably when you see this grand route to see they'll ask his everybody ever seen a pan's panthers and they all raise our hand I just don't know what to do with them right there there say what do I do with this. Kid what's the proper way to treat them that isn't just you know it's not an obvious factor it's kind of where that kids add on the spectrum that dictates the treatment they're going to get so they're communicated on both levels ground rounds level but with each every individual patient they get their primary care doctor as part of that team representative johnson can let me go to him for quite i've come back to your center live if you have another question is that's okay thank you I have a question about you mentioned it's a post infectious process is it strap infection or is do we know that I mean some of the information that filtered out their medical community and I think initially was this was like postripped and where you on friday roommate keeper one of these post consequences that can happen are we pretty confident that if they post issue or is it a broader post effective issue and so how happens historically when they first cannot start suspecting this initially the thought it's only after stop infection that's why they came up with this temple panders it's usually associated with stop infection now as time goes on history realize it's not just up infection any sort of backdated infection auto item any sort of infection can tell you the seminar response and causes then now we call them pans it's not just banned as it could be any infection causing post infections response okay so so it is strip it also many other things that including away from pandes towards pants is that we see these things used in conjunction is that the proper terminology now moving towards pans theft I would consider panda's under the umbrella would you consider a name change the doctor pants at some point no so one of the questions just follow up you know i'm i'm a clinician in the emergency room and we're into a lot of scrutiny with our antibiotic usage you know part of the criteria you were judged for is while we are we testing for strip in the emergency before we prescribe antibiotics and were relying heavily on these rapid strip test but but we know there's a post negative great among these tests w. With cultures that's hard to do out of the emergency department at one of the things you mentioned was early treatment with the antibodies do you think there is is there are we are missing opportunities that it met I may have misheard that business thought to be in some ways the consequences late there would be within a body since in the spectrum infections there's a one of these things that it doesn't matter if they get treated or not if they're genetically wired to have this reaction it's just gonna happen. I think in terms of if that's going to happen on rights are gonna is that correlating to the treatment of the infection per se probably not because they are generally interested developed as but if you know if there is a backup infection that staggering it you want to treat that infection first if you treat the infection most of the times the immune response goes away if after that treating the infection they still have some of the symptoms then you can use them update and implementation agents like i'll leave was just your regular a leave you can actually try that to help with that process in the short just as just seeing an I know it's a really good question because a lot of people confuse it you'll see right up that the first treatment to go a pants panda skid their colour synonymous with each other is an abolice well that's not true as as doctor panda said if you have something the infection the result of the infection I includes anabodic you give me animality but it's not an an automatic eyes could have pans the strike given a month and a body says not there's not the remedy is due to the infection they have not because of this I guess the point I was trying to make it is at some point my career at different points have a different stances with regard to my key treatment of potential strap when the emergency apartment said he were not able to cultures in over have tended over prescribing about its in the setting of something that I thought was consistent with straight because I wanted avoid the post complications that can happen right I would rather overtreat this one opportunity to treat someone with the antibiotics as opposed to miss the opportunity and then they did not consequences down the road it feels like this is even yet another opportunity or case for that practice pattern in certain acute settings where you're having to rely on a rapid strat versus a culture okay yeah. Thank you mapper the point I want to raises and I think is valuable having you know people like representative doctor johnson and core center urban whose husband primary care physician is there they're here in this first hand and we hear about the education has been pushed out but how do you address the nome believers how do you party address to people that may be or even in your organization or will bring you a master at children that are still resistant to the idea that this disease is real and we given all the data given all the papers that are being written where's the tipping point and and how big of a internal struggle is that over at uams and children. I remember here in front of these august folks you want to tell the truth now this guy it's a very political question someone I think the the concept of non believer comes because there is not a lot of. I think it's there's a lot of word agnosis or inappropriate diagnosis of spenders and out there there's also i'm in gender like is that we have seen and the last four years we have seen more than hundred boys more than not just boys and a lot of peasons but with the cs but only a handful of them actually help plan spend that they have something else we get the dissolved overlapping the features of the present you were that so overlapping that the alternate condition that they may have is not fan spanish so one of the thing that we do is actually evaluate them for that and actually kind of and that's where it's a multi decision economic point them in a way that this is not what you have but this is what you have you need to you know if we are guiding them to get the proper treatment and I think you know overall that the the the concept of non believers came because of there's a lot of these are I don't know if it is in a proper practice as out there in the in the community about not just it's all over it's all over the country it's. I think that's that's why this non believer concept came in right and done the home and educating them if you if you talk to them if you percent them at case that i've seen if you clear currently not the clearly explained to them what's happening this is what I did I think they they accept the fact that it does exist and am that I was able to. Current court convention but just educating them but your personal experience and with the actual case experience to this providers do help. Because I know flood slaters we can't sit here especially or non medical and you know just legislated doctor that you gotta believe this but with the with what we're doing as far as. You know what the center is doing uh you know with with the grand grounds and and the other things you're being done do you feel that were were chip and weight out there or is there something else we need to be doing in order to. To get him on board quicker or at least you know open mind be quicker that way. Tightening from from arguments at children's and ums perspective I think we have come a long way where we started four years ago and now now it's being an emergency room when we should come to the emergency they go to our periods your net I think they are reading it and they are open to treatment talk to me talk to atlanta from a community perspective here I think again we are getting better but I think we could still do more education other than someone that among the community here too so senator I have come in from outside of arkansas we do things and other states rapidly sometimes sometimes I take function of the clinic just getting established and seeing people from around arkansas but also the rest of them the region so what he and I were pretty good friends but when he and I talk in today's terms it is to get him out there into like if you have a state nurse association meeting once a year a lot of states do the state pediatric convention he needs to get up there and explain what pans panders looks like he's very good at it is very personable you've given this card then call many time when they think they get a kid so it evolves only if you get out in a very active the other thing at eight I was remissing that mentioning the advisory group you have a tremendously talented group of parents back there and in the group but I you know they're most of my tremendous beings but also they're pretty articulate. I would recruit them as there are less act if they really want to have an impact on their own society to get flyers out that he is either got or making right now that said here is a way of diagnosing panthers banders getting the primary cures officers here is a way that you do your first treatment of a kid for coming pants of pandas is not rocket size if you really want to have a big impact on knowledge and the state you would use the tools you have now but yet orchestrated december national information mostly at conferences where he can stand aside you know during that conference and talk to people about individually what these kids look like when they first come in or don't look like so I think those are great questions I think that is the next evolution of what we saw their result and other states I have mature clinics is they get out in the public and talk to big groups school nurses is a huge target they see a lot of these kids and then primary care doctor conferences is really the way you can yet to radically and most these doctors and nurses are really curious about this disease and we had one of their result first time doctor dance who was the head of this available trial doctor panders the power for arkansas a primary investigator he got well at satellite pediatric invention and it up and said on a beautiful little place then he got on the roster and the room held a hundred people. And by the time we couldn't find a chair and I want I got an hour early and he's here this thing was loaded and have lowered our halway that was loved out in the parking lot. And they had put cameras out there and tv set some people in here it's that big a topic in the primary care world we just don't see it every day cause it's not you know that you don't get one every day but boy as it. It's a curious question they would love to have somebody to talk to the said what you know was it look like i'm by the way choose what you do with them the first time through right at this paperwork exists is not like brand new so I think getting that out and getting him out is is somebody's take that on there's a responsibility I hope the advisory group is kind of pedals that because I think there were very effective but that kind of stuff and a good credit to them by the way I forgot my credit listed but actually crooked was really important to get this to have what you have another question by representative I am about to recognize you for a second but I just I want it I know if spoke was you know we're almost at an hour in okay but just to be mindful of the time but III kind of with the legislators here I want to share this this exact situation is what has lad to the prior authorization legislation that I sponsored and passed and and it's because my husband who's a primary care physician in rural arkansas mountain view arkansas have been the mountains I was art mountains had a patient that had a severe reaction because of a tick bites and when he were got on the phone with their insurance company to try to get an authorization for increased testing to figure out what was going on with his patient they denied it because somebody from new york who was answering the phone said there's no such thing as a tick warrant disease well you don't live in mount view arkansas and there are such things in arkansas it's a true story we documented it in the chart I brought that to with the permission of the patient to the committee meeting as proof and evidence as to why we needed to pass my bill and since then represent the johnson and I have continued to work i'm proud of authorization legislation because you are handcaffing. Your primary care physicians who are only trying to treat their patients and trying to get them the help that they need so then can live a better life period that's our job as I we went to medical school was to treat people and accurate them and to help them and so when you have handcuffs on you and you cannot do that that's when this legislature has to step in and take out that. A effort and pass legislation to help our doctors do what they're doing and so that's what senator hammer has done that's why representative of johnson has done I have done and many others in this legislature have done for years and so I mean it's just another little like the same boat you're talking about yeah. You know anybody can have a severe response to anything because got created as each and every one of us differently and I don't know why the hard for people to understand but will you you're right and I just at new hampshire all the states that text is if there's a lot not arizona but that's okay you know it is an environmental problem here rated yes it's a hundred percent balance you know different time blashes for does great this a great piece of legislation to lead into. What is the mean response. Alfa gal had a test force on that as well so because people now can at because they have acquired affical because of the disease anyway i'm gonna let last question and then we probably need to move on down our agenda representative you're recognized thank you for taking my question and thank you gentlemen for being here today my question is how late is too late I see on the sheet sheet that it says did you talk child recently start showing samples how light would be too late for a treatment to be effective. The. I don't think again there's a magic number that I could get but the sooner it's better than that the symptoms actually then they are seeing this is overnight change might get as a complete different kid the next morning he walk up and this is completely here she walk up it's completely different so ideally if you if you can get him that day I think that's that's ideal situation by but. The sooner is better and if you I think what we have seen from a clinical experience I can say that the ones who have none been caught so early in if you wait for three months or even longer than that then the treatment effectiveness goes down to the tax longer for them to get better or maybe they might not be. Even completely go back to the baseline what they worry for that that's delete yeah so tremendous question are getting so in twenty fifteen there was a scientists that stand for doctor jenny frank of issue has started depends on this claim gets the ever. So she wrote a paper when the n I h first kind of discovered this may be a decade after that and she categories her first fifty patients may first fifty had this kind of clinical absolute niche definition of forty eight hours to get sick within forty eight hours they bomb there got past but you can tell it's all to the map several cd food separation is I did otherwise got the whole thing and then she had a third of them that it can't particulate it over at thirty sixty days a little incident to search cried for no reason and extend their fine back and forth back and forth in a waxing and waiting for thirty to sixty days then she had a third group of the parents could remember one day garden thing about when it started. Right and this this could have been going on for a year but it happens a small segments they aren't kind of dangerous to their sister they just shove once in a while you know so the degree is kind of buried so it's very difficult to kind of put a label so that kids p n s panels but the clinical definition and wide the research on this is going to show their numbers is the clinical definition sudden and said. I took to me a mistake by the nage because that's seventy two hours or forty eight hours whatever that is is not golden it is not golden the heat treats more kids in that claim they got guaranteed to you who do not fit that little tiny window. And so it is a bride picture in real life it is a much broader picture it is a combination of the kind of things this kid is illustrating it can co exist with other type of diseases eight hundred it could have both rate is that what makes the thing hard and that's also why this clinic is multi destiny you got understand all those things that kid has the time for their adam so the issue hundred percent rate is this can go on for a long period of time that officer now you get the flare but it started maybe a year ago right that's that's what makes it hard. But it does exist a hundred percent no question we welcome I want to come out for one more we're real quick I forgot to mention the last count of piece of this clinical trial to charge you doctor about when the kids turn from pediatrics to adults or your laws covered pediatrics really well now the sender seventeen year old nine month ten kid about two months got turned eighteen I can't get ibi i've been getting it for a year you know it saved my life what do we do with those kids right so senator hammer and I had panded out talked about that if this kid is getting ibi g you got a letter keep getting if it's doing any good and he's got tools now that he can start a value waiting by the way the effect in the survive is not just oh I think johnny's better is better because he's going to run test nor logical to our psychological tests to understand that improvement we use it for insurance companies now in a few states they love it because it really shows that their prescription is working preserves copies by their nature are not bad people right but they like to see the evidence of it yeah I mean that's a we give them you know doctors want to see the evidence so thank you for that when I put it I know that he has dropped legislation for that that he will be presenting I do have one last question I know at senator chesterfield i'll let you have the last word thank you thank you madame cheer have been trying to come to as many meetings as I could on pan's standard migrate fear if we don't do a better job of being able to diagnose and treat this disease is at people who are suffering. From those symptoms may be misunderstood back at least. In other groups and maybe. Treated more poorly than they should be. Because we don't understand it and I can just imagine that some people have been arrested maybe even killed when they are going through. These eight days attacks if you will under immediate system and there were misunderstanding it more brought like so that's one of the reasons that i've been really interested in this particular conversation and I thank you gentlemen so very much and thank you madame cheerful allowing me to just make that comment and thank you so much for being here for presenting for talking to educating and I was talking about this and having a passion for the some for these cards it's really important I know I was sustained to a representative of johnson in fact just disease is really a whole nother world that I think we're just kind of starting to scratch the circumstance to understand and we saw that with covered and all the different types of responses from this I mean I i'll never forget watching my signs here a medical doctors and my and my husband other dentists but. Doctors go through their pharmacology books when covered here trying to figure out how am I gonna have treatment patient right what am I going to do and what am I going to give them and how much and I help them survive this because there was nothing and so they literally got their books out and spread at all over hours they worked and we were able to get online we did all the online research we were able to get but I mean that infectious disease is just one example this is a whole nother example so senator chesterfield you're right are really appreciate your comments and with that think else so much we're going to move down or agenda think all so much for being with that thank you very much mary franklin will move to items if miss franklin can come out and talk about this exit it seeing members. Of course the able. Is a tax exempt account for people with disabilities we didn't get any public comments on this there's no financial impact are there any questions. All right seen and this was a change at the federal level correct. Yes the disable accounts are at the federal level and they change this rule so that we could exclude them from their assets we did have a technical change to comply with the federal rules there was a limit of one hundred thousand dollars and that's being removed any questions. All right cnn that's we'll stand reviewed. All right the next one item d. Suburb are can be. So essentially this rule removes the requirement that the office of appeals and hearings send out all males certified it also allows the parties the option to opt in to electronic communications does not require it but if they choose to receive electronic communications to receive their decisions then it allows them to have that option there is no financial cost it's actually a rather significant savings over time we were very conservative we estimated that this year it will save us about twenty thousand dollars in the next fiscal year forty thousand dollars. Okay are there any questio. And none thank you for presenting this will stand as reviewed let's one is item e. Mr rouse. Good morning elizabeth pitt and division of medical services. In this is that all to clarify a requirement of cms's regarding third party liability and made no substantive changes to how we treat third party liability but we did have to change or a state plan to qualify or clarify we had no comments and there is no financial impact would happen to take any questions are there any questions for me. See none of the adam osteo. Okay members under other business I have a hand out for you. Which is a news release. Am from the high analysis showing the locks on prescription fills in northwest arkansas tripled in one year I think that's really good important information in its under the arkansas are arkansas at six fifty one of twenty twenty one and so this is just some data to present to you about the prescriptions of the lock phone and the lux home program and the different acts that it references in the um in the news release um II appreciate that they gave the legislators health care providers and advocates the um your credit at really trying to combite combat the opid epidemic and through the these different bills and legislation and i'm always grateful to kind of point that out and because I think this body collectively has really been unified and as supporting this effort so I just wanted to bring that to your attention. So you can take that sure that the last thing that i'm handing out is an isp. Without objection. And. And so this is just a requesting that are senate committee and we would invite the house committee or so to participate with us in this and where we would be studying. The effects of a digital asset moaning facilities also not has crypto mining facilities and add they've become a calls for concern on all different levels but particularly a. As it relates to this committee it has been a concern on the public health welfare and the safety of the citizens of arkansas and is my intention and to do everything I possibly can to. To combat this on behalf of the folks that are affected by it so with that i'll be happy to answer any questions. Seem nine are wait i'm sorry yes yes you're looking at the at the proposal what what specific. What specific health concerns because you state that in the whereas what specific health concerns are we looking at. Yes or am specifically with there is a a noise issue that is twenty four seven with some of the facilities that are located in and the state of arkansas not all of them but some but this twenty four seven noise is unbearable for people it is affecting their their their sleep out which is called the resort of sleep it's affecting their hearing it's triggering different types of and health conditions. In them and I have heard directly from physicians who have seen patience as a as i've as an effect and as a result of just the noise itself that's only one aspect as it relates to the public health. The other aspect is this committee is also the keepers of eighty q and the environmental issues and there is an environmental impact not just the noise is an environmental impact I believe but it's also an environmental impact on the water usage at the when they went into some of these facilities they promised that it would only take five hundred balance of water when in reality a month at a cool there their computers and reality it's been five thousand galance a month instead and so that is a that is a direct issue they have to collect that water and have a permit through eighty two release that water back into the the ground and that is under the also under the perview of this committee and so that needs to be studied and understood it and make sure that these permits are in place and that they're complying with them and then again the safety issue is is really the threat of that water usage am an effect on the citizens that have to also depend on that water supply. I think it's a yeah I think it's a great idea that we then we do the study and we determine they actually impact because I think in reality we have a lot of miscommunication and a lot of information that's not. Uh it's not helpful for the community as a whole end crypto mining as a as a body has a lot of potential impacts to further our state and i'd like to make sure we establish the the guard rails to to prevent any challenges but at the same time to be able to continue to invest in allow our citizens to invest in this technology so thank you for that but II appreciate that II really have not seen any benefits for my constituents to be frank. There's not many jobs that have been created as promised but and that's not really to be debated but it is important that we study as study it and so that's what i'm proposing but I appreciate it. I'll go right back to you real quick oh well sorry senator king you're recognized they came out of chair just wanted to go that yeah there is an environmental impact with these things food to correct the record that the place in bonus for example they applied to only used two thousand gallons of mine you know at last report they were using two hundred fifty thousand gallons of months they missed that you have any term you take that much water into any intake facility whether it's a plant or anything they have rules and regulations go through we don't know what these things do that's why these things need to be looked at you look at issues of like what's going on down there into wit the controversial aspects of that you have the spar to awkward far where there's regulations that have to do with the use over fifty thousand gallons so there's a lot of interview impact that needs to be discussed on this and also i'm going to try and follow an isp that requires these crypto modern facilities to. That they will have to if they want to uh place a business end of have to file something in the city and county and then file something with the pse six months out before they do it because these things are used in such a minister power be read the new york times had a excellent article in the national security aspect of this how there's a network of these things going around with these chinese companies around the country you look at a lot of different aspects of this but as far as environmental aspect there's a real environmental aspect of this it needs to be discussed how do we regulate farmers but we let these people have though. So I want to have that isp and i'm going to try and send it straight to public health hopefully we can have that discuss at the same time. Yeah thank you I agree. I will just send it will get it on the next meeting agenda. Are any other questions. Alright and anything further. Okay. It sounds adopted without objection. The. Representative johnson yet just before we go I just want to remind everyone we're gonna have a meeting next week in northwest are concerned so we'll be meeting on the first and in the second that's in conjunction with a cat symposium on health care hopefully we can get as many people there is we can I think it'll be a good opportunity for us to see some things are going on around the state of the just and the slow rock area and I think it's a great option to hear the things that I have to present so anyone disabled the count we appreciated if you need help with that just that takes me let me know thanks thank you with that we are adjourned.