Arkansas PANS/PANDAS Advisory Council

The arkansas panel panders advisory council meeting today on august seventh grade everybody join us clean those that are joining us online and if you. Hopefully everybody is able to hear some you can hear us okay and I see missed rim which way that is mr if you can hear us okay alright i'm assume there were go can tell who that is but if you can hear so quick give us a wave give us waveless know you hear there you go okay everybody in the audios wave focus in here okay good okay i'm glad everybody here today thank you for our senators a representatives members of the council first sort of businesses to approve the october sixth twenty twenty two minutes of the meeting if we could get an approval please your motion have second emotion second discussion. All in favor say I post. Alright should be and then next on the agenda it members there's been handed out and if you are joining us by zoom it should be emailed to you if not by now any second you should get a copy of the legislation was passed during the last session it'll be referred to senate bill one eighty one which was passed by myself and representative warn that'll be a matter of discussion in a minute but it's not on the agenda which you should have it also this was emailed outright and we email them. Okay all right so next on the agenda is the update on the clinic data from the university of arts or medical sciences and doc have doctor pando if you don't mind would you might come to the table there to pay into and also sander who's joining us be a zoom. Okay and you should have a hard copy in your handouts if you're present and if not you should have one through email that has been sent to you that you can follow along with an and thank for being here if you will push that button and just your name and title please who your filiated with for the record and then sand to do the same thing please. When hit button you should turn there you go now okay thank you very much in our piano period and such a lot and sandra. I'm sandy bin with arkansas children's hospital uams can't spend is clinic and the sand are you going to be given the report I am assembly should have my slides. The. I'm sorry say that against standard. Does my similarly have my slides. Assist him to her last week or do I need to share my screen. Yeah can you can you share your screen for sandra. I can okay. Making your similar slides we can see it as of january twenty twenty three we had a new physician during our team and that is doctor natasha bottoms she is a board certified period as well as the psychiatrist and so are had all slide has been revised to include her and of course after pending myself. Our next slide is one year of familiar with this is our twenty twenty three data which is sixteen patients from january through june we have fourteen arkansas patients that we assessed and to outside of our consultations the reason for the lower numbers on our out of state patients I will go into and more detail in the next slide it's just we have chosen as a clinic to focus our on site in clinic. Patience for arkansas. Any questions about that and questions membership you do just push a button. Okay not the same. Okay. Oh next slide the top graph which is health care professionals information sent. That is largely responsible for our lower number of out of state patients last august we decided as a clinic to start providing are treatment guidelines and our diagnostic criteria to outside healthcare professionals so there at the local level they could implement. Interventions instead of waiting for our patience to be seen in our clinic and kind of a side effect of that if you will is that when we would get to them on our schedule they would no longer need to see us and so that was a win when all the way around and as twenty twenty three has come in we have continued that practice with great success what is not on the the slide is our july data and we've already shared our healthcare provider information with at least four providers already for the month of july. And I say at least because I can track in email but I can't always track the number of facts is that I have sent and sometimes that's the best way for them to get the information. But we have been able to educate an equip a lot of professionals both in our state and around our state as far as the best way to intervene with these kids. I have a question sure how many of these include. The. The adult cases is this just the pediatric cases just the pediatric cases all adult cases I send over to pri into their team. Okay and if I got back with you on cases that they're actually seeing to incorporate in the data no ma'am II don't track their data. Okay do you know of anybody in the adults clinic is actually keeping track of the patience insane and the adopt cases do you know I don't know do we have a contact there that would keep up with that senators they all know. I'm on a receipt is a cant the decision questions. Yeah I was asking about the adult cases are we having anyone in the adult clinics keep record of the adopt cases that they're actually seeing at uis itself I take doctor pandor's gonna answer their question I think our i'm sure they have that are good so patients being seen as a dollar site we do have contacts there. Okay so we just that we just don't know the actual. Numbers being seen in the adult planet as of today. Yes we don't have that right now yes okay. Is it is that number achievable or what would we have to do doctor panda get that structure in place I think I am speaking from michael here I think it's such a good we can get that. Okay. That plate michael known your head are you the use one that okay michael come on up to the table if you don't mind while questions on the table will discuss it and then am I going to representative warn with the follow up question before we move on sandy. Send me on the the circle that you've got on that attract there so I see the royal blue is pan's banders is not ruled out what is the asd. Sd is at his spectrum design okay so the rest of these except for the royal blue there. Are non pan's panda's diagnosis right. That is correct okay. Alright I just. Asd with throwing me so thank you. That's to speak to their pie chart just a little bit you will notice if you look at the next. Three slides from last year ptsd was not on those slides but it is on the slipe ptsd is posted from our extras to sort out we have had an influx of trauma patience this year that have had some. Similarities that needed to be teased out from pans panders and so because there was a significant number of them I did not want them to get lost in the other category and said those are spelled out a little bit more specifically with this patchwork that are not on last year's petrol. A sandy this is paul ryan I just wanted to congratulate you on these charts but more importantly i'm the awareness campaign you guys started by contract and primary care physicians in state now to state as we had discussed for a couple years since the center was set up and I think senator hammer might recall this and represent a warrant that part of the answer to this treatment's disease is getting out to the pcps and telling him what they can do kind of our research at pay shows you can solve probably eighty five the ninety percent of these kids if their pcp's no either handle them correctly and if not can consult with your center rather than sending the cabin to send the kid physically there so you've you've made major advances in this since august of last year and i've just wanted complements you for being you and doctor pant doctor bonded should being very proactive in that I think it works it's worked everywhere else in the country that's even dabbled at it but you guys are superior examples I just want to point that out. Thank you I have had a lot of very productive conversations with healthcare professionals over the past year it's it's been very rewarding good excellent outstands what should happen hard going to hit the pause but none that because I got michael would you go ahead and doctor panda would you turn off your mike please we limited on the number and mark what you would name and turn off for the record please michael cack with all right in this pocket asks a question while go about the adult data that is at the doc when it can you speak on the yes the adults had a referred to pri are we have a specific way of trishing them to a provider we do not have a specific clinic there were patients are only seen on specific days or specific times whether they are incorporated into our regular flow of patience I would be happy to ask the question and get the date at the date of for this group in regards to the number of adults we've seen with similar type diagnosis again pants panders as a pediatric. Diagnosis but I my mind is can't blank on the longer diagnosis that's fair that's multi solar poland normally I i'm just don't have it off the top of my head will make sure that we have those numbers and we'll have them to okay let me ask you an end sandra this is just for the pediatric case is right the chart that you've got is there any way we could duplicate this over to the adult side as well apple ask the referrals or. There are not very many that i'm aware of but i'll do some research and see how we can get that information to me okay and if you important a form of an email and send it emailing you so push it out to all the committee members and would like for it to be sent also to. To the represent johnny and two center chest field over here because they have been attending a meeting in the past i'd like them to be included in that and also the other committee members were trying on their center over near and represent warning so if you don't mind email and that way we could all know okay I really hit the pause for a second and we got senator chesterfield which is one twelve and then come and over to you needly thank you mister chair and thank you for allowing me to ask a question is a non member of this community but I couldn't hear but noticed the arkansas charts were twenty three and twenty two there are no cases in southeastern arkansas is that because of the lack of a wareness. Is because we have no one we don't have a substantial number of pediatricians there who can diagnoses diagnosed excuse me so could you help me understand why their particular session section of the state bears know resembles to the rest of the state. That's a good question I think uhm. It's I don't think it's lack of pediatricians might add lack of a bonus but it's just what the reference had begun from the other from what we get from this other state other parts of the state but a lot of this is. The awareness has been raised so much here lately and we've only been doing this for a couple of years now so I know that that area of the status here you are positions. Then other areas of the state and I can't help but wonder if that is not a contributing factor because if there's no one there to diagnose it diagnosed it then there's no way we will know where those children are and I fear. I really fear that we have cases there are being out across the state probably being under represent it so I told you understand your point I think. To diagnose the most of the times they end up or in our cleaning the front route it may take longer so I think I don't think we are missing them but I also want to point out that it is not as common as we think it's look at it so that is a very rare thank you thank you mister sandra looking at your question i'm a go to ten addles do we you mention about the expanded number of premier care positions that are starting sea patients do you do you have the ability on this map to identify where they are located so geographically we could see their placement. I don't because a lot of them. I just don't. It's okay if you don't I just wanted it if geographically in case. We want to know where the positions are the clinics that are now starting to see patients said otherwise before we're not. I have an email address and I could do some. Digging based on their email address maybe to find out where their clinic is but that would that would be very tedious and I honestly have no idea okay fair enough for enough to ring. All right some are out of state summer in state. The. Most of the time. The family is initiating. To the pediatrician and or to my clinic and either which way. The pediatrician and I make a connection and I get an email address and I shoot it off. And that's that's kind of sort of the end of it unless I get actual intake from the patient there has an address and that is represented by the the statement. As far as where they came from. I mean we are getting several now that are like now we don't need your protocol we've got your protocol if we've already implemented it and we've hit the end of our protocol and we need you to figure out what's next. So okay but as far as where they're located i'm sorry I don't have that data okay all right i'm going to say chest fill for one more than naturally so church real thank you so much is this like sick of sale does it a current one ethnic group more than others does it occur more than women than me what are we finding in the in there. Yeah thank you. So it's not like sick of selling over sick of selects more common african americans but I think we truly don't know the actual incidents of the disease and also if there is any any produce position for specific ethnicity or specific so it's occurring across ethnic lines and gentlemen so it's like said it's it's more than answered is before people usually with the children all right thank you so much thank you mister chief windows in the appreciate you're welcome they franchise sent up nearly so I was just gonna speak to the adopt population roll quick I have shared at least three that I can come up with with without trying reviewing that I have visited with doctor clothes the air and doctor horrible at UAMS who are both then very helpful and those three specifically that I share with them have been able to receive because they recommended it and they have seen success so I don't know if they're getting others from other people but I can speak to three adults at least there may be a two more but I can't think for sure thank you may think to speak to also my transport that the the reference for a dogs we get is very few very very few so I don't think even think we can make a pitch or out with maybe three to five or even less than that p. To the best she can just if there market just gets me from to address serve questions around and put out an email to so okay alright so don't have any more questions this time so sander would you maintain you on share about the chart that you not covered so far it. That's it there the last slides in the set are just last year's if people want to look to them for reference I always keep the previous year data available. As I go because you know it's always nice to be able to go back and forth to to see how we've grown. Tandy police require question I know you guys said planned last time we met number months ago and sent or ever I talked about it on having a little more frequent clinical presence debut guys develop that or is it still trying to month door what what's the status of the frequency of the code apparently our schedule is for every friday every friend that can graduations that's fantastic that's great. I've got one question as one request right now i'm getting a great view of the ceiling of. The. The house to the set of where we're meeting room you guys really don't see the people they could bring that down be great and the second one is the sound just comes out a little muted from from your chamber in there so it's tough to hear the questions but it there you go that's much better on the on the biddy up thank you you welcome and wool i'll repeat questions back I can't do anything about the new view as far as what you're looking at up here in the chairs that's that's just not fixable i'm afraid that the question I have when it comes to the sustainability of the clinic. If the traction continues which was what we always wanted in the first place we always wanted to get to where it could be pushed out to the state were more providers would take interest in awareness would be rached everything that we're seeing achieve. What's that do to the long term sustainability of the clinic if the numbers continue to drop how how are you going to be able to just buy keeping it open and watch the brake point where we need to maybe have that discussion about supporter just give us insight so i'm thinking I don't think there is any consent about sustainable agent thing we will continue to see patience and part of their reason as and the ones that do end up in the clinic or a more complicated we help them figure out if it is not spend as what else it is so I think a lot of times they'd be doing more of patience with that as I think it's still going to continue that still going to be patient that we would be seeing and also with more education we do have less number of patients because most of them if they're struggling and spend as they do get better with after implementing or treatment protocol but we do see them at the you know with the go to all of this if they don't respond and what's the next step let's save the near or something then they would. This is gonna affect education and awareness is. Aren't bright any other questions on the report. Sandra thank you for a great report thank you for what you do we appreciate it a lot. Let's move on now to and if you guys at least are to pay in a few minutes just running where you are because you might be able to wait on some of the conversations common the amount recognized mr ryan who is the codashfounder president of the page foundation and up missed ryan you've got the you've got to platform to talk about the trial and also pathway forward. Thank you center I do want to throw in one thing before I start that the question you just asked about what happens with the clinic in the future i'll give you a little inside as to what happened arizona I think it's a good predictor what will happen there you get more out of staters starting to show up and actually some people from around the world is what we got actually quite a few their revenue paying which is I think self supporting in its own as far as the clinics existence but I think the stature of the state of arkansas and your clinic starts to rise pretty highly when you become a regional center much like arizona has become as one of the two in the country really just to give you an example of that and I get in my presentation i'll jump a little bit ahead we've had requests from a number of states now based on the success of your center and the one in arkansas rome I give examples of tennessee delaware and now in no annoy of setting up their own clinics at medical center so it's very popular the other side of that coin is there is a team from university of gotherburg and sweden that's do out there result in the middle of october training to set up their own clinic in the end sweden and we've now had request military to do the same so you're at the cut of the point and did I and i'm going to suggest i've been the future I haven't talked about a doctor so you're probably got it not be happy with me but we are going to send these teams future teams probably to arkansas well for trading on how they run their clinic now that they had quite a bit of experience which I think ups the game in the state of our consultant other trials that department companies will be having on this disease so I think that the future probably will lie at a bigger recognition of what you're doing because of the state will participate. The new and I talked about this since the early days and I think prayer resolved its men a lot. As far as research dollars come again to the university but it's med even more in a reputational basis around the world so i'm just gonna kind of throw that in as a question about the viability and this of that of that center that you have. On that few subjects I wanted to talk about one is the. I wanted to kind of recognize the advisory board and and especially matt probably why met the first time we had it and doctor rick smith who I don't think we talk about enough sometimes in these meetings there really kind of helped establish. The the center representative warned yourself for all the work you would folks have done not only the center which is obviously a success and best you would say and he was saying about their outreach and awareness for this disease but also for the legislation you're passing covering the medical care for this I know that that having participated in a little bit I know it's a bullet of work and you guys did a a marvelous job being here through I didn't I don't think I saw a negative vote in the whole ledge such a brandy of those sharings it's remarkable how how into getting the sob arkansas I wanted to make sure you you heard that and also to the center itself for the marvelous work they're doing on the clinical trial there's as we talked about before the FDA proved to click the trial probably about a year ago um. To gauge the success of idigits the treatment for these children and it started in the united states are consolidates the principle of that not always the protocol but actually starting it and I think it's gotten the set the second most participants in this trial the trials become so successful it's now spread the europe in two sweden and I think for five sites and italy or do they start up so it's a pretty big deal in the world of pan's panthers and ibigit so I can't help believe you guys in ourselves for that one as far as look at local we started I think it's pretty a pretty successful kind of venture and and I think just my god feel II think this trial is going to be a wildly successful where no trials ever been successful before I think most of the way we're running throughout the world in getting very good participation healthy participation up of some pan's kids around the world so that's the critical trial it's actually progressing pretty much on scheduled these things typically take probably five years by time you get all the recruiting it's it's a tough protocol and then after that you've got a write a month and get the panels to approve so it's a process that think it's about a year you're and happened to itself that maybe a third of the way done on this the experience that I think I mentioned the other states and the countries that have cancelled a fall the lead of arkansas in establishing their own clinics that is you see the rep the evolution of this there are reach out outreach the primary care patient switch pandon sandy and i've talked about for years is going to work at and that's really the answer to this disease in getting it treated early and given that pcp's the power you've given them in the treatment area. And the last area cover is well too one of them as we've been asked peace has been asked to put together a world's summit at work to begin a feature you guys doctor panda knows he's probably gonna have to get up from the world and give a speech and I think that's wonderful that he will have that opportunity but I think it's also a recognition of what's up in when I came down the architects a couple years ago what looked at just a few clinics around the country has now grown to it is a worldwide effort a concern and it's very well recognized to be recognized now you know the parts of the world based on that a lot large part where you guys participate in the successful treatment of these children so I think that's very happy with that obviously pieces goal in our research efforts I think we barbly done a lot of microbio research and now i've asked the effect this morning that I had a conversation about neurological research in this area to try to couple that and find what they call a bio marker so a biomarker is simply something like a blood test right now you you go through these clinics and you got psychology psychiatric people and you got neurologists and trying to figure out this pants patience exists in this child a bio marker something like you a simple blood test that you say all my gosh is kid as parents panders are the nature of been trying for twenty five years to do that course yet never set up a clinic either so I think we have been a little more proactive and all these things and successful so we're gonna we have already started taking the shot at coming up with the biomarker which the university of arkansas the state of arkansas in general and a doctor pandered particular I think will be a part of that we just had a chat this morning about the neurals part of it so I just want to give you a sculpt that this has gone way beyond and I think successful way beyond what we talked about couple years ago. The last thing I want to say is we are desperately trying to figure a way to come down and see you folks and person cast zooms great but it's really not all it's going to have to be so sometime in the next six months i'm open to grab some of the board membership pace. Because we're starting to find a lot of things around the country I had to come down to have a chat with you and thank you so much for your word but also the set up but cannot be ongoing picture with the state of arkansas that II honestly think you're obviously you've demonstrated that a willingness to attack this from all angles and I think we need to cut off. Take that success in enthusiasm is spread into the world research as well so and then do that ask you but I think i've i'd like to come down to have the chat with you in person to do that I have a question okay let me let me go naily first because she was there for component you carefully so minds a little delayed question because I couldn't figure out how to push through up but and I guess so for sorry for the out of order real quick but one question I know the average ages elementary before puberty but do you all have a cut off on what age you will see as far as younger because I had a four year old come to me and was told that you all wouldn't see them because of age and so I was just curious what was going on there. Yeah. Okay if yeah you can retalk to me I just wanted to verify for a future thank you. You to go and connect afterwards what you want to be approached can you to connect work I have is email okay catherine. Okay man is going back to the blood tests and stuff that are trying to come up with. I know we have the capping hound panel that exists through the malicular labs company on oklahoma is that something that we can't incorporate in years at ms and at children's because that test five. Or is in the blood that you know the antenna double mean that they want the two available the anti I don't know how to say there's last. Gander last I g and warn answer to the one in camcas activity so the reason i'm asking that is that is the test that my son actually had done to help. With his diagnosis of hands so is there other blood tests that you are actually going to develop that's gonna pick out what more straight tiders or something that is actually going to find the route cause of the symptoms like a bacteria or valuable action is that gonna be included in the blood test that you're going to come up with though i'm getting them thirty thousand foot level of cat because i'm not a doctor so III think it the blenders is an example but you can get it in certain other ways when I biomarkers base could just an indicator so I think you can get it from you know spinal fluid you can get it from bloody up there are different ways of detecting a binal marker as far as the cutting panel I know the folks they are known for probably a decade madeleine county and is marvelous position one of them people on the pan's role but most of the clinics will tell you there are some indicators in there that indicate pants fantastic other diseases as well but it's not a true indicator so it's kind of gives you a little hit but it doesn't really prove pants panthes and unfortunately when you invent something like the coming hand panel people leap all over it said well it has pans on it so i'm gonna you know a doctor prove to the world that this kid has parents panthes you guys probably know from practice because II had a grandson that was affected hugely by the so II understand the personal parts of the but it's also something where it's a tough disease and and it including the kind of burden that it can also have other diseases associated whether the house and sandy so it is really a beard to diagnose there is no proven. So. Way of saying this is the declaratively medically blood test wise so they're everybody else is kind of indicators right in the baby you could explain a little more about that that think you've seen the panel I know but. Long story short cathed it is not indicator it is not approved of what a pants pay it does show a little bit of indication as other medical tests can do like you know the kids got a low iga system right I mean system collect I have you can get a little indicators that are they can lead you down a path maybe but they're not proven appending can you add that a little bit scientifically because which way beyond my brain actually thank you parliament in a great drama I don't think anything I was going to say a capital in that in the medical side we can be say it's not sensitive and a specific enough forepan spenders that exactly what paul was telling that it can be seen these positive values can be seen in other conditions and can also be seen in normal kids and normal boys and that's why we don't use it now that it's not a test that actually proves or disproved against okay and i'm sorry I can ask one more question sure okay another question I have is going along with my son's case you know we done the counting him per panel we also done the twenty three and me genetic testing to wear it actually down the genetic profile and broke down the gene mutations that my son had that we didn't even know existed but we actually had to pay and get a geneticist on board because it was like seventy five pages of genetic code that they had to go through in the software and pick out certain you take on that you know about camera and actually had which all this one was the empty hfr which is the the methodion process he has the cypi two deserts land six g mutation meaning he has a handful of certain gene mutations do we know if there's a direct core lation between certain generations that go along with. This. Called unquote mental issues mental disorders pans pandas is that there are any data out there that can relate that hand in hand I mean i'm falling back on the counting hand pound the wikis back a month day when my son was diagnosed that was the first. Tall that doctor k used in handsdale ill annoy when I ever week it and get help in the state of arkansas so you know we had to do the cunning hand panel and then we had to do the twenty three in me because he wanted to see as at fault genetic make up is that something that we are actually doing in the state of arkansas to help the parents with the genetic code to make sure that we're not given them the wrong medications if they cannot meth alight it because once they do the twenty three and me and do the genetic coding they upload it to what they call gene sought and i'm sure those of you that's been dealing with this a long time know about the genes at testing that's where you you know upload the data in it actually gives you a breakdown of what medications the child can take in what medications you should be completely away because of the mutations that that individual actually has I just want to know it make sure that we're covering all the bases all underlying things that can be taken place in each care and each adult that's dealing with the house. So ball can I take the question yeah you just port you you know mine pattern i'd like the chemistry part of that is way out of my league but cathy II do this study that we're talking about this research about coming up with a biomarker is a solid again okay let's there's a reason it's been twenty five years the n IS and figure this out so yes we're taking the shot that III think we're probably the only group that's even got to do in it it's very complex it includes you need experts in it in the gene when the electrics are neurology and gastro intestinal diseases kids poop there's gas as they come up hoop that there's turned analyzed out for certain type of these it is so complex because when there is nothing and this disease says you know while it affects the brain and causes somebody to act like they not it's caused by probably something creating your microbio is finding something else despiting something that you're reacting to a gene that is a complex one of the billion strong and in a stack so to do that we're now assembling people from around that country probably about it doesn't doctors who are really good at what they do the nature doesn't do that they can ever building in washington nothing against the and I agree but the omeganic we like we like to look at the country and say who's really good at this stuff it might be interested in actually solving a rare disease for the first time in the countries history was ever actually solved the disease like this so is it is it up our moonship now I think we can up expert including talking about and cutting them in the cutting and panel people were not excluding we're not the enemies or fat you know find each other for a commercial product here. But we're what we're finished children just like we did when everybody he had do clinics nobody's got new clinics well turns out that they were wrong and a lot of kids have benefited we take the same added to doors research I don't like failing panda that like failing I got a few docks around the world who just won't accept it so that's kind of what we're going into will it happen overnight now will they include all the things you're looking at probably yeah because it is so difficult so multipassed and I mean that's i'm just telling you what you know you can get a lot of folks give me a political this is a political and it's real science it's going to cost a bottle of money but we're prepared to do all those things because it's important to do it that we lose white kid to this disease it's just way too many and it drives me say away tonight so we'll succeed trust me and it and we will let you guys know and probably through senator hammer and whoever we still talk to if you come out but we can not arkansas please let catherine know god like jackson account that's where we're going and that's why it's the dog on heart you know catherine I get it but if we don't tackle it I don't think people will coordinate included in the collaboration that's going to actually win the day and like it did it covered you union clab renews up silent performers or even individual testing or twenty three and me that those are medical experts they'll leave it to another pap but that long story short that's what we got to go I think but you know back in the day when camera was diagnosed that was the avenue that we had that was the only app that we had so when we i'm excited to see you know that we are going to have something new out there that we can say hide you this this ness and this should get you on the wrap drack I mean I know parents that are so desperate that actually take their kids actually get the feet full transplants you know I mean people are asked for it. I mean I know yeah I know I know a family that you know their son was walked inside he's been forty eight hours newed on the psychiatric floor just last month you know because they kept getting the move so I mean i'm just a marm i'm natural to you know i'm not being bossy or nothing like that it's just my concern is real i've lived it like you have lived it with your grandson and just to try to help these families it's you know which way do we sterile you know what where do we go in i'm i'm looking forward to seeing you know the blood panels and you know that be an initiated order story short there is no way now but there is right and everybody was got an indicator we're not talking to be part of this effort okay so it yeah I talk to happen tomorrow but yeah you you're legitimate and sand we should be able to produce something like that after all these years are looking at what panda come in real quickly if you want yeah your patience on this it's a big question that out every parent really travels over you got it add to this or yes thank you I can't think thank you there was the latter a lot of questions and that we talked about I just want to briefly add toward paul had said the one to one type of tracking they're talking about if this medicine works good if they if the boy are girl the patient would met in that medicine works for that person so that we call that formal good gynomic testing that's already been done at or consider children's. And the second part of the testing that the jean what are the inside twenty three and me so we have more advanced more at a label in a whole exam genome sequencing testing that's also been done that that's been offered to our patience if you know if as needed right and then and generally a third question we know if these fan spanish kids have any specific mutations that would put them at risk we and that's what policy trying to wish we still don't know yet so we are trying to that's that's the reason that's been going on and I can assure you all of you here that any sort of research that's been done to look at different type of biomarkers and tests for pan spenders arkansas children's we um as we would be part of that so I can assure you that. But when recognized senator irvine. Thank you just on the assessments do we know how many how are you tracking or so the treatments and. Can you just how what are the numbers on treatments. Yeah. In your repeater but i'm sorry never number of treatments of your patience II have the information of assessments but as far as treatment I think when when when you say treatments I assume we talk about available so I mean the number of patient that's receiving among the one that we say is very low very few maybe I can send the past six months from january to june probably one okay as most of them if we get him on time the first line which is and I implemented relation and they respond to that most of the time okay so the responding to like a is that all in about it now it's an approximate like oh I got it okay okay not i'm sorry if they have any fiction they obviously they would keep them at that about eight centimetres sometimes they will respond to that but it comes to to you know to get to the point of needing available alright thank you. Okay mr anything else on the past week forward. No no thank you thank you for the time senator okay all right any other questions earned at this point. We're gonna move on to e which is the update on the insurance coverage for paying a pandas and dan you were up if you don't mind the table up front. And name entitled for the rector please. Thanks and i'm dan honey I count of product blinds that the arkansas insurance department also of non voting member on the advisory council I think of it looks like a unit I probably should have a have included the the bill that you you passed around which I think senate bill one eighty one which is. At h sixty eight seventy six which is basically what has mean and you you know you know this is well as as well better than anyone because you wrote the wrote the legislation perta yet as as you were as you're aware. The this this act amended the previous mandate which covered ibig and we were having a little bit of looks like we were having a little bit of an issue with getting providers other than the children's hospital center of excellence to get this covered so what this lot does and we have we're in the process of promulgating the rule to implement this. Is it provides a that our rule have a protocol in place which was developed by the the center for excellence by wait under which providers out in the state other than the actual centers of excellence can of provide this service in that they at their petritions who work in conjunction with exact high trust and a pediatrician with the subspecialty of I think neurology and rheumatology and something some that's all they're there in the the rule of we have a this is all i'll put together in its you see the the market that of I have provided that so on the agenda and we are are very close to being able to get that getting that filed and once we get a file we will have a thirty day review period and then have a hearing and we don't anticipate any we don't to spade it being controversial or or having having any problems getting through in addition to that it also provides for it in the u. In the event and it's at some point we hope that the effort this the serve procedure of this treatment will be fda approved and at that time we with the department it gives the commissioner of the authority to. To make the requirements a little bit less strenuous because that's used that that's really that the big issue that the insurance companies have with this is that it's not fda approved so that they're therefore we have all these these hoops to jump through another thing that it does it puts in a process for reporting obviously of reporting to the sooners for excellence that we can we can track what's going on in the like a said will hopefully have a worse we're still having this reviewed internally and it should be ready for filing here at with we were supposed to have it. We're supposed to have it all all in place by august the thirty first it looks like it's probably going to go a little past that but obviously once we have to go through the process of getting it filed getting the thirty days having the hearing then once we have the hearing that will go to legislative council and get it approved and then it will become effective of one one of twenty four so that's pretty much what's going on as ebay have any questions I know that it looks like you have a you have some more proposed legislation so maybe we're going to get to do this again next year or not next year but baby in two years or once you are once you go it's this obviously the an ongoing process in the and we're gonna we're going to get it get it right eventually. Okay i'm gonna go that all over hit one point when this becomes fda approved which is cannot clear cate moment because at that point a physician that has gone through the protocol process would be able to order it regardless whether pediatrician whether whether it's pediatric or adult yeah smoke most likely it'll be treated just as any other treatment would be treated rub which for insurance purposes which is a fda approved or so though that will that will definitely open the gates we we don't know you probably know better than I do with the what the fda is a is doing i'm sure there's there's a a process in place trying to to get the fdator took to move on this yeah I think that's the importance of the trial that missed rhyne's reference soons we'll get that crowd on the comproved fda that it's you know it's real deal than then we get their senator hangs at your center over and then come to you natalie said thank you i'm just curious under number three y and three a only after a licensed position and then you have emphasises pediatricians hika trust development pediatrician etc. Wow why when you put primary care physician there well that that was so that was that was the language that was in the original law so I think that the I mean thank you my concern with that is that in rural arkansas because I think the idea is to try to eliminate these patients from having to travel to literal for children's hospital that they are served out in the rule parts of the state of arkansas there there aren't pediatricians out there they're primary care doctors who I mean who have done extensive four years of medical school three years of residency at minimum sale and I know why you would limit that because they are more than capable of being able to provide that level of therapy and service for their patience so I would prefer as not limits are our doctors that can actually do madison and do it every day right well as I say that's that you know we can only leave up a rules have to pretty much mirror what is in the the specific legislation and the act itself so were our hands or tide as far as that concern that might be something to be addressed in in the future legislation or what are you on exhibit orange of a tune on both I guess one into you in section three a. Because if you do decide that you are on it open that's up to a dollar make your doctors would be able to do that I mean limiting yourself I don't know why you would even include that parentheses you know at that less and etc I guess we're cover it but I just don't even know why you would include that that makes sense. I would just strike that to be honest that that's my opinion where in the wearing the after you are proposal well I was going to ask and where well i'd have to build them I know that the take me a minute to scan through it about I know that this language in in three b where it was lifted almost provided from the act so. Yeah. I mean II read on page seven but we go it would be answer yes but the the top of page seven looks like let's see. If it looks like under f. F f one a is the the language that is though that is referenced so it talks about as repeated AC if that the pd will actually it says the pdf after patience. Says the pediatric patience it doesn't say it has to be pediatric right that I but it's still must be in consultation with a a pediatric so psychiatrist and right yes and and also. A license position that practices at least one pediatric self space. So I got a question on that case that they just. When once I can. Just keep going i'm looking at some. Okay right so I mean you you do have you do have you do have the consultation which is appropriate yet they I think the idea behind it was so that they're prominent care doctor could deliver the there be. At their clinic all settings yes you and that's why i'm just well you know and that's the thing that they're the pediatric patience primary care physician so that doesn't necessarily have to be a pediatrician and that that consultation you know. I guess conceivably you could have the. The primary care physician you know out in in the rural real part of the state could consort you know that that doesn't necessarily require that the patient. Have a visit with the with the the license pediatric psychiatrist in the and the right next so they can consult you know maybe via telemedicine or telephone but there they need to it need to they would need to have some consultation that the visit the physician have some call station with the specialist right right and and that's that happens all the time so I mean I don't there's there's nothing wrong with that but I mean I think in your rule you just need to make sure that it's that it's night. Uhm limited okay as that makes sense and so and i'm not sure you know we can we could probably tweak that language because i'm looking at i'm reading only after a licensed position has treated the patient with two or more or less intensive therapies. And these therapies were not effective so that we're talking about the treating physician here did not the consulting position in the language of the rule so that's why I would strike. In parentheses. That section I would just leave it only after a licensed physician has treated the patient that's my opinion and I think that it's consistent with the legislation that was passed over well what will take a look at that thank you nearly. So in the follow up to that so i'm a physician assistant and i'd read these kids and have been some an association with acc and some of the association with the ams and some. We're able to do a protocol without there their need is this going to limit what I can do as a pa versus an empty well I mean for pursuing to the statute it needs to be a it needs to be an empty so if you if you work in consultation with an md that that would probably be you know you you could be doing it if if you could do the treatment as long as you're under the super but you've need to provision yes position yes and then can ask one more cos that that didn't start all signature asthers. If we so and i'm so unmedical i'm not legal so this is have I don't understand some of this but if that were in connection with the centers of excellence or with UA ms we don't have to specifically have a psychiatrist and one of the others correct that satisfies that well is you know you said you you have to follow the protocol but but poor that per the statute you still need to have caught you need to still need to consult with the psychiatrist and the pediatric subsearch specialist. The. Dark panda do me with the conversation we had during the legislation when we are doing this. I was virtually there okay they i'm working off the recollection the way the same was structured was that animal just used personal names because it helps ad context of the. Nadly functioning in her capacity would be able to see and treat the patients. With consultation with a primary care physician which is what we have going on now it would allow it would allow you to do that. We modeled after what is done at the clinic which was there has to be that arrangement that council of these medical disciplines I will call them in order for that final diagnosis of ibig to be ordered what we what we did which we expanded it so that as long as you're working your inconjunction called clabbate agreement whatever with your with your physician. There's we're not asking anything more of you or making it anymore. Uh restrictive or giving a greater latitude than what is is being required at the clinic what what it does it's opened up and I think sandra kind of gave testimony to their while go it's doing what we intended it to do and that it opened it up and in here's the guidelines for how it happened right so my understanding was any primary care physician out there who has consulted a periodic. I think it was a couple of specialists mentioned one of them can if they if they are sure that is the diagnosis they can prosper that's my understanding of reading the right but it think since that is working with an MD II don't see a problem they also could correct. Sure okay so I was busy with senator urban and I think she's she's got hitting the neil on the head here it's in item three a if we delete the parentheses pediatrician psychotrious developmental pediatrician etc. Delete that because in b. You save only after a consultation and recommendation issues issued by a period at subspecialist. Eg pediatric neurologist predicting me knowledges period romantologist or pediatric infectious disease specialist you are outlining it there. With what reference to bob so the license position is going to have that consultation. I just think you make it ambiguous when you put that parentheses there on a I don't have that this year on a one ray you're into the way you need to delete the parentheses right after only a licen after a license position delete that parentheses because the new clarify it would be three from the same day it's it's a different this three account so I see three b here if the periodic patience primary care position which I think I agree with your position. The. Correct because math suns twenty seven years old it doesn't see pediatric these people license physician which is a primary care position could be working under consultation okay so you use all this fine yeah this is a different document that i'm working I think that's that's okay okay that's. See. Okay I see now a single okay yeah what we can we can we let's let's not but we can we can delete that okay about same page for you. Still get one more question if you don't mind so on the list of some specialties it was neurology rheumatology and infector's disease and it leaves out immunology is there a reason I mean allergy isn't listed and the reason I ask is at um as I work with doctor clothes the air whose site and doctor horrible who is immunology okay i'll defer to you senator hammer of what was the what was the the the thought process in the regional legislation on that sure when I asked the question yes didn't reach section of your plan maybe I am looking at a senate bill one eighty one i'm looking on page seven. Why six and so six and seven. Okay the efficient was lease pediatric substantial including on the roll just rhetoricologists or infectious disease position. Who is treat the well I think maybe in fact disease position in the immunologist is that someone was okay so we're getting technical here and you think it should have been meeting all right let me I can pregical personal perspective missed ryan perhaps you can way and on this if you remember that conversation when the legislation was going through in this has just been point blake when the legislation was going through and we add down to the nitty gradient committee there was a big debate over that one specialist being included in in that list quite once my opinion I don't know I could get out of committee at the time had that not been given up at that time and so we we eliminated that one from from the bill and it all was happening in committee real time and we've eliminated that one from the up from the legislation so at least we could get out what we got out with the other three remaining in there the proposed legislation that will talk about here a second put your back in that we would bring up the next session but we we fight one about live to find another day and we'll come back and try to get that one adding honestly at a time you know the recommendation wasn't in the insurance companies were fighting that being in there at a time as I said we want to get it out and get get what we got out with the and the uh somehow should went through my head getting stuff on the way through the up but that would that was the long and short of it. So I think sender park my recollection service we write a hundred percent right about that was the talk about every knowledges there was some discussion the late night I think if I remember it the areas but I think that for the commissioner I yeah I think that etc was left in their by intent to allow that to broaden if people I got to pay the would improve it to other doctors because we don't kind of know the future medicine some of the doctors may be able to the list you have there if you then throw in email just would complete what we know of throughout the this country and the world of the main doctor superstribe by big for parents panda's kids that's the reflection and so that again if you put you knowledge as in there you would probably fulfil that etc that's in that line but I think it's you know it's pretty complete the weight is that the intent is to get folks who are for me with given I b I g were diseases to apply that to a pcp's recommendation to give that child or adult the commission thinks that's appropriate that's why that that's how they're working in the way it got severe americans exactly right if we came up on a contention hopefully get straightened out some day but that's that's kind of the reason that you should reserve that you guys could decide to add other space automatical understanding if you don't want to limit legislation to them to modern science that expense and contracts. Kind of daily basis for treatme. Equation. Really thanks for the catch under a urban any any other any other questions about the proposed rule. II have one other question for the security on their procalled then you talked but I don't have a copy I didn't get the example signed up and should speak a little bit buying but in principle the protocol that you're going to go should follow in is it being run by doctor panda as the expert to understand the the path to getting ibi g treatments have been map and also there have been new. Inventions are called in their price that's a bad word but there are new measurements of the treatment of my doctor pant I think it's become aware of recently that made that you may want to look at to see that measure the successive from ibig wine two to three which is a revolutionary cut above find they were developed in arizona worked out very well here so that something that we didn't know before where it could be get in the first application they get will be you know if the kid doesn't change a lot of a sudden application number two it's a you know it's a dream come true they get office and gets a lot better but this way we scientifically traced it rather than having to get parents or opinions that may be a little bit medically I really like that tool and I think doctor panda has a pretty sure so I would ask you to request one that you have him review the protocols because he's going to be the most up to data and the second that you take a look at that tool that's been a developed to put that in the protocol as a way of measuring it success. Hello okay tipped two things for first of all this up and I didn't really have any thing to do with the protocol was actually provided to me by of but michael kick at you a missing out I know that everyone all the appropriate people probably doctor pay in included have reviewed this at ums a another good thing is that and this is how we specifically the reason that we. We included the protocol as an appendix is that way if you know if you put it in the body of the rule in order to amend the protocol you would have to amend the rule weekend but we can basically amend the appendix at any time so that is open to that is open to further review and though and I may ask the the similar michael steeler okay we we might need to to touch based on that before we will finalize the file this and make sure that the doctor pander is is on board and and if there's anything additional in these beds that this protocol we can we certainly do that thank you very much III II really love all the people the UAMS right up there in the top in the world in this disease so anything else those in those rules of the appendix I would just ask you guys as a final thing you have done to check it thank you thank you. Any other discussion about proposed rule. Okay good deal all right make those suggest return it had been out for public comment yet I hope it know if they should should be very very saying but i'll i'll make those I make those changes or take that all inside ration for we actually to file. Can you give me a favour and I think this is inappropriate because this is a public document when you make those adjustments to that would you mind sending that. To. Yeah you'll come to you I was just saying beforehand so you had just before he had sent senator the legislators if you would absolutely yep and then that way we we can before get there yet way we can make sure everything articulator okay good thanks to all right thank you blessing on the agenda. Is the proposed legislation and i'm putting us out there for consideration or action today actually just want to get it to you to take home look at it we have another meeting we come back discussion but it addresses two things one is the requirement for insurance pick up the cost for adults that are diagnosed with pain and panders and need the ibi treatment and then the other one is to add in the imminent that we are just talking about and that would be the proposed legislation that would come up in the next general session at those two things back in or add it to it so you can take that read that we have a next meeting we can we can have that discussion on that alright anything else from anybody. One quick question and it may be appropriate to table this to the next meeting i'm not sure again this goes to i'm not leave I don't know the legal department but when we first started the council one of the things we did was we allowed it a lot of money to ms for education purposes and awareness purposes which I hear we've done somewhere that and i've been able to hear more that this was it than any other meeting but are we do we know we're all that money was a lot allowed to and how that was used. The up to my children educate me your michael to inside others the the money that I remember was given in the form of a grant from me private individual or entity that was specifically earmarked for the purpose of getting the nurse set up and getting sandra who got job in place and that was intended to be that seed money to get that going as far as any additional money that was earmarked specifically for education purposes. I don't recall any specific money or am I in my missing something michael do you remember. Anything specifically I do remember one of the commitments it was made was that ums would absorb the cost of doing the promotion and doing the doing the these education to any providers the pamphlets that were produced in work distributed they they absorbed that within their cost without any additional appropriations being given am I am I right on that so the okay I may need to go back and look at my notes or maybe mistake and then okay. On that note though I would like to say this. II think what we need to have a good discussion under on the next meeting agenda is that this this commission are this council will expire the into this year it was never intended to be into perpetuity it will by legislation expire at the end of this year I think what we need to have real frank discussion about instead of the protocol for is we need to see about establishing a five or one c three nine profit that could champion like other diseases do whether that's all timers dementia you name it they all have five or one c threes that I think would be good for this council too to have that discussion so that we could have a platform to take and read you all raise money through a non profit which there are grants out there that non profits can get access to and then that father wants three could have the control over how that is done without paying to have the involvement of the legislature or even so could have free rain whatever they want to get the money to do go up due to promote it I think that should be under that would be on the agenda for the next next meeting that good. Yep at represent one. Drine I want to just say this there it has been a real privilege to work with you from the outset to see that I mean your passion is made it where we have something special here and but I love the fact that even after we get a center for excellent here in the land of switzerland someone like doctor bare pending that you continue to try to find the bio marker and you continue to make things better it is an honor to get to work with you and for my buddy cathy pocket we're going to try to get the adult population where they can be taken care of two and i'm excited to see the journey that we've had here and just thankful to be a part of it but doctor run. That started with you so thank you. What they do want to make a make the council aware of i've had a discussion with senator urban center urban is the chair of public health doctor lee johnson is the house share public health there's agreement to make sure that the shop does stay in privilege later through the public health committee which would answer you will be a a good place for the continued discussions to happen because it it involves a public health issue she is she is consented that it would be assigned to a subcommittee so that there would be that presence of from the legislature and it just wouldn't fade away so anything else from anyone else. Here are nothing else than we are turned.