Arkansas PANS/PANDAS Advisory Council

Some folks here we need to be respectful of everybody's time because of the professionals that are on this committee get back to their clinics respective treatment of folks and so we'll get started here in just a minute but one you'll to my co chair representative warned to sharing comments she wants to share no comments just a good morning good to see everyone appreciate your presence. All right with that being said if we could get the approval of the minutes from the January 10 meeting care your motion on that please for approval of the minutes. Thank you got a motion got a second got a motion second on favor say aye. Posed thank you all right and then on to see which is the update from the university of you M. S. and if we can get to Michael to the table please and Dr done and we got sand or joining us online if I remember right. And if you all would please name and title for the record. Can you hear me yes yes ma'am yes Laura done the chair of the department psychiatry at UAMS. Michael character office of institutional relations you're recognized. And send you will go ahead and identify yourself because you're on the agenda please. Warning from UAMS and the pants and his nurse. All right very good thank you for being here first of all welcome doctor done I think this is your first meeting with us and for the benefit of everybody in mind just share a little bit about yourself just to give you a way of introduction how much time you have I'm just kind of give you a 30 minute lunch which ever get your for I started at UAMS February 1 it came from a Stanford University where I was the head of geriatric psychiatry there so I'm on the other age of the other end of the age spectrum. And I'm really enjoying my time here in Arkansas and exploring the State and getting to know the it's an amazing department and institute institution good welcome to Arkansas we thank you for being here Q. Michael you want to take the lead or Sandra as far as just giving us an update regarding the clinic data sure at if Cindy could go ahead and and share her screen. It kind of gives holding up let's let's assume that they had already been sent over I'm sorry can you just a second. Being informed we didn't get him or don't have them. Could you resend them once you get it set up we'll get him out to the committee please. Okay. Mr chairman I apologize and may have been an error on my part okay that's our. Throw me under the bus and non sandy please. The bus no no no. Sorry it just takes a minute when I have so many things on my computer. And my question is do you have the copies of the I do not okay I my apologies. Senator maybe one gets pulled up with what you're sharing it or immediately after you're done sure and if you'll email it over to Emily she can get pushed out to the committee. Can we while we're sitting here that way everybody will get it. I'm still waiting for it. A busy year I would practice nice and solid for 2021 and we've been incredibly busy for 2022. I'm sorry my plus lots are still opening. As we're a I can. Give a little bit of information that the map will show here in a minute we continue to get referrals from the northwest and western part of the state's central part of the state in the northeastern part of the State of from the delta region we have not received it we've had some inquires but no referrals of patients at this point in time. What about the southern region yes the south skews the southwest part of the state yes but. But really kind of that delta's southeastern part of the. State we haven't received any referrals. Okay what while we're waiting just for the sake of time so we can make sure we leave a room for the last 2 items Michael do you mind going ahead and from the part that you can about the adult referrals from the clinic data do you have that sure I can. The specifics as far as having things traced as has been done before with the pediatric patients that process has been set up yet of I can tell you that since we have set this set this new process up we have had 8 patients that were referred to. Inquires that we have had those patients we do have a process in which those patients are referred in first they will go through if they're paid as we have stated before we're going to there's no change in regards to pediatric patients adult patients will be will be seen through doctor close your and then as we have the opportunity to present itself where it seems as if additional services or date that referral will be made to the neurodiversity clinic we're we're it's appropriate an additional assessment will be made bye numerologist who will again evaluate for what's next in regards to the treatment of the patient. These clinics if there is someone that is in an active slayer if there is someone that is in need of an urgent referral or an urgent admission. This is that it is best for them to go to the ER rather than to wait for referral. And then you know they'll be a a similar assessment done with adult patients both from a psychiatric as well as a neurological perspective. So we'd like I said we've had approximately 8 patients that have come through since we set this up which was. Back in. Back in in March is when this specific process was set up so we're we're confident that this is a good way for us to to begin to handle adult patients who are exhibiting the system the symptoms hi doctor done you look at anything or. Sure. What can I. All right hang hang on one second we're this is a the center of excellence is about children okay just wanna make sure I saw you wrote a note that no yeah looking at no this this was and no I I just want to say that our primary focus again it is with pediatrics there's been some issues that have come up in regards to adults we want to make sure the committee to we're aware of those that needed referrals but. When we wanted you to know the steps we've taken some set up a process to work with neurology and psychiatry as clinically indicated okay or all right let's do this Senator you ready to go. You can see my screen I'm ready okay let's do this and members of the committee we'll come back to see I just try to wanna make sure we use our time wisely so we'll come back to see for any questions about the adult referrals but let's go back up D. let's go back up C. and Sander if you'll go ahead and and president and can you can you email us to us why you're presenting or do you need to be out of your system to be able to do that. I think I need to be out of my system to do that okay want to crash it well I'm trying to present decision unscented but go ahead if you would please wayment president represent one 's got a question or comment. Okay I've been texting with the Kathy Puckett the and for those of you on soon it's my understanding that the only thing you can see is just what the slide center on the screen right now. And sandy is that correct from the rest of you. Little Richard referring. Okay they haven't seen any of us. So okay. So you're only going to see what. They're only gonna see what Sandia sharing. So okay and they wanted to when she's done sure they will be able to visibly see any of us now. Okay sure I'm sorry about that guys would just. That I wanted to make sure that we're all on the same page so they they would just hear us except for what. Seeing sandy and the slides. Our Senate go ahead please. Okay as I was saying 2021 wrapped up nice and solid we have 33 patients 24 from Arkansas and 9 out of state and that hi chart on the far corner is the breakdown of our patients that we saw in the diagnosis that they had. So as we move into 2022 I wanted to keep the similar format as far as our out of state and are in state and is Mister cake had already mentioned we have not seen any patients from the delta but we are still seeing a pretty good scattering from across the state otherwise. Our reach outside of Arkansas is already even more for may this is not captured in need of our medications to date. Last time we met you asked me to start including how patients here about our clinic and so far it is right at 5050 the internet website Facebook sometimes that is the. The Henderson physicians network website sometimes it is our website sometimes it is the pay centre of excellence website sometimes it is Facebook and then the other 50 percent of the time is their health care provider. And that can be whether it's E. N. T. or their pediatrician or a counselor or therapist is in that category. The graph is the bottom of the bar graph is what you're used to seeing as well and the. Pans pandas not ruled out. Have been 5 patients this year so far and other diagnoses are the remaining of the year so far. Do you know the the source of those coming from out of state. Do you know how they're being referred to us say that again Sir. You're finding is on the physicians and does not work. Because they're they're looking for a local provider and they're not finding one we are the closest one to their region. Okay and are you. Do the numbers show that there's a up tick in patients that are being referred from health care providers because one of the things we're trying to do is get the word out to health care providers so are you finding that there's up tick in. Refers coming from healthcare providers. It feels like but since I wasn't calculate collecting that data prior to I don't have a firm answer but anecdotally I would say yes it feels like more and more saying my pediatrician. Tell me about you or I'm just getting a referral by fax from the pediatrician and then reaching out to the parent and the parents saying. Yeah I talked to my doctor and my doctor wanted me to come see you guys and sometimes they are taking information from the website or from Facebook about our clinic to their pediatrician and then it's going that way but the the direct. How they heard about this is coming from the pediatrician or their their child's counselor or therapist so the word is getting out. Okay good are you where you can send that slide. Show now. Is that right now okay if you send. Send it to a family. If you're if you're saying that on tour now what we can do is what they get out to the members of the committee and then members if once you get it you want to look it over if you weren't able to read the numbers or anything we'll come back a toward the end of the agenda to take up questions okay but at this time are there any questions for me to committee members regarding the presentation. Good to see the growth. Okay all right then with that we're gonna move on from we're move on from C. of what's or any were there any follow up questions regarding the the adult referrals in the clinic data any questions from committee members on that And before say that or did I understand while go going to start setting up or who's gonna be responsible for modeling data collection after what is being done for the pediatrics we'll have a discussion internally to make sure that we've got a system set up to where we noticed more specifically what's taken place we just that data just hasn't been captured at this point in time and so we'll see what we can do to to replicate what's being done on the pizza side on the adult side again it's it's a different it's a different flow than what takes place with the pediatric side button so we got to see what we can take from pediatric side and apply it to the adults. Okay all right of. Natalie. You mention the adults we go through the neurodiversity department could you tell me which providers will be seeing them. The providers in at the Department neurodiversity that they come in through doctor close your and then on from the psych side and one of the team within the neurodiversity clinic trying to is that. My apologies. I'm trying to. Yet nursing the nurse's name is Tammy who is coordinating the care and I've just drawing a blank on which position that's okay doctor clothier being and that was my question was still in this yes Sir because I've yes Is with him a few times on a couple of patients yes okay thank you for. Sendirian. The placement center USA some. All right did Natalie G.. It can be done H. U. L. A.. To get that then yes thank you. Right did you have any questions okay. All right. Okay go ahead. Okay my question is that you know you saying that the patients need to go through the emergency rooms at UAMS indoor children's depending on the age group at. Where are we at with education on the emergency room workers that that are they aware of the pans pandas clinics and are they willing to work with the patients when they come through the E. R. that's my question we are involved in education on an ongoing basis and the answer is yes. Cathy Jett follow. Kathy I'll ask you a question are you I know back sometime ago you had people who were not the. Getting. Taken care of in the E. ours have you been hearing anything else in recent days. Not currently but. We do have a couple of patients that have gone and gotten you know diagnosis and have instant issues actually getting in and getting our. Treatments. S. thank but with the guidelines and everything that we have lined out now I think I'm bringing that things will start to get line back out and but no I have not heard of anybody but I just want to make sure that we are educating you know the rest of the hospital so when patients can be and that or you know in crisis mode or what have you that he attending official at you know. Doctors are 11 what to do and who to contact after they have patients come through the E. are. Okay I just I wanted to ask you I know you're a lightning rod for a lot of parents to calls when they're experiencing stuff with their kids so thanks. Let me let me up. Let me ask on a follow up though that that you a mission children's. What are we doing what we need to be done to get that information out to the other ER's and what would you suggest or do you have any suggestions for how that could be pushed out to all the other E. ours in the state. That's a that's a good question you know we have discussed before about these emergent cases when they present and you know our physicians I have been involved in a in a number of different educational venues I'm not I can't speak specifically to help what's been done with emergency medicine with emergency departments across the state but that's something that we can continue to to work on and continue to reach out and do the you know educate as best we can. Under help me out I'm struggling of my memory but doctor Bledsoe use to be over the trauma center far remember right and maybe that's maybe that would be an Avenue that we could. Utilized in order push information out to the E. R. because that's going to affect all the. I think that's going to get the majority of the E. ours in the state if we could push out that information to them. That's a good suggestion thank you okay thank you and also Surgeon General Bledsoe. Would be a good I'm not sure who took Dr bludgeons place maybe one of my colleagues can remind me who took up doctor Bledsoe's place. But but on the Surgeon General which would be great Bledsoe if we could get with him he could probably help push out from a surgeon general's perspective maybe and build out that network thank you. All right and I think Emily if you'll check your emails Emily has forwarded out the. Our point that Senator had put out so if you want to look at over will come back before we adjourn to see if you've got any questions about that okay anything anything else on item D.. Yes ma'am okay Clea. I'm I just have a question about I know you had said earlier it said that there's a different flow that comes to you in mass and for of the adult population but I know in the past we've also discussed there being some sort of. Process being put into place especially for those that age out of the clinic at that are at children's and then if they're continuing to have things after and there's still things in the process of there being a transition protocol or do we not have that in the making. I can tell you that that is an ongoing discussion between children's hospital and you a mess not just in regards to and standards but for any and all diagnosis where you have children that are at children's hospital is seen by a pediatric physicians that continue to transition into adulthood we continue to work on primary care as well as specialty visits it's it's an ongoing process that we have in fact we had a meeting just just last week to to further discuss that and so if someone has been a patient and has been seen at children's hospital for any one of a number of you know whatever you can be seen at children's as a transition from adolescence to no longer be answer able to be seen at children's we we continuously work on on the process of getting them saying appropriately at UAMS. Okay one of my questions there is a lot of those things that people are diagnosed with in children's or things that already have departments or existing people that are working in those areas when they go on to you and mass where is this is something we do not have so I'm trying to find how we fill in that gap to make sure we do have people. Thank you again doctor closer is is one that's been the point person for handling of those cases that are sent to us that are for patients that are now adults and then that will likely be the point as children age out of the pediatric system and transition there but that's where they would go and. He would have access to their records to treatment plants the whole 9 yards I would also say that you know I don't think it can be only we can give a blanket response to that because this can be very patient specific P. patients have different manifestations him some patients may have more psychiatric mourner logical more immunological and so you know I think these are good questions to maybe ask some of the other specialties as well you only have psychiatry representative here but you know I know some of the other clinics have a broader representation rheumatology neurology. Immunology infectious disease so if you appropriations primary needs might be. The patient home medical home mayor may not be psychiatry and I think it needs to be determined on a patient by patient basis not on a. Blanket basis and that's what we're trying to do is create a pathway for the best patient specific care plan. So is there a protocol for that to figure out the best Avenue for them because I'm that is the that is the protocol is to figure out the best plan for each patient yes we haven't okay because from a parent standpoint these parents have already gone through. I'm going to be literal here health and have gone through with these children now they're having to do this transitional. Leave again and so I'm worried about because I've watched even the mental state of parents with this and it's horrible so having them have to figure out and now go through a whole bunch of providers again in different areas again. No that's not the intention is for now it shouldn't be on the parents to figure it out it should be you know it on a minute on the clinic whoever whoever's in charge a clip of the patient's care at that time to help figure out the best next step and sometimes it's not gonna be immediately when a patient terms 18 there's leeway in there actually you know the the really nice thing is doctor rainy is very interested in that that transitional age youth as we call it so I think we have a really good set up there to me for her to be help us determine that. We don't have a you know and we don't have though a centralized you know a staff person whose job this is to figure this out if that's what you're asking I don't exactly know what you're asking but. That's not in place right now but I think it's everyone's intention to make sure that those patients get to the right place quickly and I think it happens very well here I've seen it happen. Efficiently you've seen happen very efficiently. Deborah may. I wrote down I don't this right phrase but like a transition portal or there's a seamless transition between the patients are being seen either in the clinic or hopefully with maybe some progress will make that what if it's a patient outside of U. M. S. what if it's patient outside of children's then that that transition. Might not be as of. Agree just because they're gonna stay with that provider but if it is a patient that's within the center of excellence that's going to be transitioning out of adulthood over then those would be the ones we'd want to watch so I said all that to say this are we and I'm trying to read the data do we have anywhere on the data that we're collecting the age of the of of the patient to where we could start or you're out or I'm just talking through it if if we've got it on the data form is there a way to identify the age of the ones that are currently being seen it shall. Sandy if if you're still with us on the data that we collect how much of that is age I mean if you is that something that I know that we have that information I just didn't know if it's something we've got it in a reportable format in another ship the stuff for you get in there about 2 small group you you violate the you violate the hip and I think that may be a prohibited so but not but I want to ask anyway. Yes I do have the information on the ages. And the best I could probably give you is less than 10 or over 10 to be able to protect their identities. Okay. And that's one of the barriers that probably makes a lot more challenging as we got to work within the confines of what it says so as not to do that so to the case to case basis that you're talking about doctor done I guess maybe one thing everybody wants to know is is there somebody that's specifically charged with responsibility of that smooth transition from that a lesson over to the adulthood and is that going to be the physician Sandra you know who's on the who's on that and that's going to move it well it's double live primarily with the physician is following the patient and from that you know we work to coordination Senate is a very good job in our as well as others with within our clinics to make sure that information with the patient flows to the to the physician that is and clinic team and it will now be saying that will now be taken care of the patient. Thank you to hopefully better answer your question if the patient has already been established with children's. And they are on the teeter totter of 1819 we go ahead and see them in our clinic if they have never been to children's like if they are not a state person and we don't have a history already established if they are 18 or over they start with you a mess in my counterpart over there is Tammy bila. And as soon as I get that initial phone call I connect them with Tammy and Tammy takes their okay. Never anything follow up on that thank you Mr okay all right thanks for the clarification everybody should have the the slide decks now the center so before we move on to E. are there any questions about the slide deck information that she sent out. Okay then on to the. You should have members. And also represent recognized representative of painting over here Pilkington sorry feel content and representative right they've they've joined us in the committee today so create you gentleman being with us today feel free to ask any questions that you like. Item he is a suggested protocol for helping and I'm gonna use this word in some correct if you don't like it but the footprint or the capabilities of providers being able to see patients who may present to them of 4 possible issues associated with Penn pandas this guide I was actually suggested presented by Mr Ryan who is not able to join state because he is traveling this week but it is a a copy of what he has presented as a suggestion for being able to expand the footprint of providers being able to work in a collaborative arrangement with the center of excellence and be able to expand capability of access to care of I articulated that close Michael thank you been in discussions with them to you via articulated that fairly close I think you've articulated that well okay so just so there was no misunderstandings and what I'd like to do is not necessarily read it verbatim but get pretty close to it so we can have questions as we move through it understanding this is a living document will call among the UAMS and children's that is still being discussed there as well as that correct statement also Michael that's correct clinical leadership both at both facilities. Really though we want to hear today different comments that everyone has and then we want to also have the opportunity to further evaluate how this moves forward okay so with that being said if you all will just take the document will the short one to make treatment for children of pants more just one Arkansas children's. House Bill childhood post infection pain center of excellence should be provide information on the medical standard care guidelines for diagnosing the treatment of pains associated with the disorder of pandas one the questions I've got on that in that would be will this be coming from our center of excellence will be coming from Arizona through our center of excellence Arizona being the the first one in I guess one get that clarification or see if you know Michael or doctor 91. Well I think if there's if there's anything that comes forward it would have to be something that comes from us because it is in collaboration with the with children's so I want to I want to make sure this this addresses are salute this is our solution and not Arizona solution or anybody else's. I. The. The information should incorporate the guidance provided and goes through and identifies those sources are those sources originating. From and do they aligned with Arizona or what she would do they align with their these these aren't anything new they're just identify what's already existing. This is what was put in place in miss when Mr Ryan submitted this for our for consideration of. To the best of my knowledge is consistent. Okay. They should also include summer sheets flowcharts describing the diagnosis treatment I guess so that same question that's that's also originating from. From the amber what is a recognized source. By way of example the guidelines might stipulate that a licensed physician and it gives examples after having tree with 2 or more or less intensive therapies a course of nonsteroidal anti inflammatory drugs goes on list all those things have been tried and we're not effective so let me pause there any any questions on that one. Natalie. Being a mid level myself and having seen these kids for many years I would like there to be a wording of somehow besides a licensed physician licensed provider or a licensed provider with collaboration with the physician or something because I mean obviously myself I treat a lot of these kids but in Arkansas we have a minute a lot of mid levels who are excellent providers and this takes them out of the whole picture completely. You'll have comments Michael doctor done. No Sir I I'm we're here to listen and take notes and we're gonna take what we here today back to discuss was with clinical leadership within both institutions okay. That Natalie rephrase what you'd like to be considered so we got terminology right please. If you can be ready in a couple of ways. I mean it would be great if I could just be a licensed medical provider in the state of Arkansas because that would including physician assistants nurse practitioners and Indies as well as studios would include everybody if that is not an agreement you could write it a licensed medical a licensed physician or a mid level provider in association with a physician. I'm I'm thinking about. We just passed rules or they're about to be passed I'm sorry I'm trying to remember if we cover this last week or if it's going knowledge can be covered in Fort Smith June 1 at the public health meeting about the full scope of practice for a PR ends being able to apply for that and I'm asking in in your suggested terminology would that drop below. A. P. R. N. to wear a are in or LPN or any other. Practice provider I'm asking just for clarification how how low with that terminology dropped the ability for someone to do that well it would it would only be a BR and BA MD or DO because in our end doesn't have the they're license doesn't allow them to diagnose or treat. Okay I mean I guess you could list all a licensed physician. Nurse practitioner or physician assistant I mean you could list those 3 out if we wanted to. Well and that way it would be it would leave the Arkansas P. and all of that out. Okay a feedback from anybody. Just so there's clarification that Lee would you would you type of what you would suggest Senate amlee let her push that out to the Committee and then Michael doctor done if you'll take that a consideration because we get to the end of the meeting I'll tell you what I think our next step out of be and if you all would that where there's there's no misunderstanding or misinterpretation from the chair okay the. Okay any comments on that. Okay cost consultation recommendation issued by pediatric subspecialists of Raji than any comments on that paragraph for suggestion. Natalie. Yes this is Jonathan from AT and I guess what I'm wondering about that are we in this balik talking about people at the center of excellence or we talking about people outside facilities other parts of the state that might. B. as a specialist but encountering this child that would need to confer with the center of excellence. Let me give you what I think is my response Michael just again 5 don't articulated correctly with Mr Ranjan tent you let me know I think what this does is open the opportunities for those subsets to be developed a relationship with whoever the provider is and it would bring up level of requirement so that it continues to be a team effort so it's it It duplicates what is present at the center of excellence now but it also would bring that level of requirements so it doesn't become a silo defect it's an all encompassing collaborative agreement with maybe provider groups that are developed through those personal relationships with primary care Michaels at. Well a lot of times when these cases come forward from other subspecialties. It's generally a a pediatric neurologist or a clinical psychiatrist that doesn't have experience in this area and so when the referral it's not unusual for us to read receive referrals from other sub specialist and so you know. Most of the time when someone has a sub specialty practice and they come across a case such as this it's not unusual for them to referred to doctor paid introductory. Did did that to. Did that answer your question. Yes Sir. Our Natalie your comment. I was question. Okay go ahead. Is it on this appoint. Me yes you're at on the subspecialists they do not list psychiatrist and I don't know if it would like if the. One so that was about our exclusive. But I mean we already discussed article of the year being helped us some of our patients and so if if this is all exclusive we need to add psychiatrist in if this is just suggestions. I don't think psychiatrists will defer to the mineralogist regarding IV IG. Our psychiatrist do not recommend or prescribe ideology so I actually sent a patient of doctor clothier because I had to have a plan of care bill that's the so it's hard interest. Good I was gonna say doctor close there's been very helpful with me and one of the insurance companies required on my adults to see ACRC you A. M. S. for me to continue IV IG treatment and doctor close the air did send me a PO see that stated and I believe Dr horrible was involved in that case as well but the actual office note is better close the air and so. Okay any response Michael doctor done. M. as doctor Johnson stated again and pediatric cases. There is. Internally Dr Reddy consults relied realizing Dr painting to make those to make that call. So I hear what you're saying and so I I. I want to take a note of it so we'll we'll continue to work through that and think through. A Kathy. Okay my question is to both clinics the UAMS and still grants when we have patients and into these clinics that already have a diagnosis of the pants and or you know pandas say from an out of state position but they actually live in the State of Arkansas and case in point so I'm gonna use my own son for an example we got a diagnosis in Hinsdale Illinois only. At 10 back to Arkansas to cheat to get actual treatments what is the protocol now for existing patients that walk into your clinics that are in dire need of a hobby as you treatments are you gonna have to retest them to your on your valuation or are you gonna follow the protocol that the doctor of the treating physician that actually diagnose the patients and work hand in hand with them to go ahead and do the treatments that are actually needed here and date of Arkansas how is that going to be handled. I would imagine we do receive patients from across the country some that are being sentenced for diagnosis some that have already been diagnosed and and we will work collaboratively with them I'm but I can't say specifically what will be done because each case may be different that's one of the things that's free that makes this diagnosis even more diff difficult is because. Each case has to be and must be handled differently but on the whole we would work collaboratively with the physician that's making the referral. Would would that be the even if the physician. Is out of state physician. I don't I wouldn't I I would I would imagine so okay. Or could I as I was listening Kathy's plane them thinking if they get a diagnosis from a state but the treatments going to occur here. And I'm asking position of state override center of excellence in Arkansas where the center of excellence would disagree with the physician out of state in the diagnosis because we're gonna have Medicaid appear to table in a minute I'm I'm going to have some of written down the assets the question who's gonna pay would if a position of state is ordering treatment is here who's the payor source on that and that's that's what's going off in my head so any comment well I don't want to say you know the work of someone out of state trump's our center of excellence but I will say that there will be a collaborative effort to to make sure we understand the plan of care and and next steps and and how that moves forward I. I think that's the best way to describe how we would respond to to something like that and I. Because we we do that already I can't imagine something different taking place okay. A. Let me say this was among them a Committee mistrust one just because my mind free forget I wanna go back to the transition of care from adolescence to adulthood I can tell everybody in the room not affiliate with children's and UAMS that there are ongoing discussions because in other areas of diagnosis where they're adolescents they're transitioning to adulthood there are all their conversations going on about other diseases and how to make sure there is a smooth transition that's an area that's been identified not that's bad just everything which needs improvement so I will put that thought in everybody's mind that this is a just tell you which one here today this meeting that that is the subject of discussion all right number. I just want to bring a story to or for the forefront what we're discussing this particular par is. I want to know how we handle a family that's even diagnosed by it the center of excellence that we have been trained by the gets a different diagnosis than what we gave and we. Say that we're going to overstate the one that trained us I feel like we're having a lot of discrepancies between where we're standing with diagnoses whether it's out of state and what level these diagnoses are coming from and there is a case that recently has shown a lot of light of where we stand as a clinic in this state and it concerns me greatly for these families. I want to make sure before we try to answer could you were should you state that again because I'm trying to follow you and I think I lost you along the way I don't know who the we is in our club when you're using terms like that can be really specific because I since I'm new okay so as a cannot even know who who you are and what you're this or you're representing so that would be helpful so I am a mom he's been dealing with this for many years I luckily have a child that is been great for a couple years after treatment I am one of the fortunate families that do not have a center of excellence to come to I A. Natalie Bradford actually when she first started with this diagnoses and trying to learn about it my child was one of the first ones that she gained knowledge from other states providers to get help. My child was only 8 years old and I almost lost him 3 times so I have a very passionate mission but even more so have a passionate mission as I watch other families go through it because I have been lucky enough to walk forward with my child and it's been 5 years so we're in really good shape so I've seen both sides of this so I have watched. A family recently get diagnosed by our clinic so the center of excellence here in Arkansas was trained by the clinic in Arizona this family went and got diagnosed in Arizona and got a diagnosis of pandas pandas I don't remember which one exactly but one of them was diagnosed out there then came back here to our center of excellence which are providers have been trained by Arizona. And now I was told that no that's not actually the diagnosis so I'm trying to find out where we stand with even where we're trained by. Do we follow Arizona do we not do we have our own protocols and so. I'm concerned that families are in this. They said they don't know what's going on. When I can't obviously can't speak to a specific case and that's going to be much that's the service account I had no idea what case you're talking about. Okay yes. And I trust our clinicians I mean so if the question is. Why are they getting different diagnoses I think that's a. That. That's not something I think I can give you any answer to when you say where do we stand doctors disagree on things often this is of this this is a diagnosis of exclusion as I understand it I mean without getting I want to get into the weeds about the diagnosis and get into a. You know discussion about why different people get different diagnoses. That's it's almost it's almost impossible question to ask. Well that is I don't know when you say where do we stand we stand ice we stand with following the clinical guidelines as laid out in the research and following evidence based guidelines I think there's no way I could speak to why why 1 physician would give one diagnosis when we give a different one that happens all the time. It's it's very frustrating for for the patient in the families that's all I can say not trying to. You know excuse me I can't speak to a specific case if you ask I you'd have to ask doctor reunion Dr opinion I believe that they do follow how they were trained very very carefully. If you're not satisfied with how the diagnoses are coming out I can't answer that it's not even a not being satisfied with it the way it diagnoses comes out because I understand and I respect greatly education of medical providers and and all you all go through so it's not it's not about that it's about being on the same page collaborative Lee.for a family we we forgot that we are not only dealing with the diagnosis here but we're also dealing with a family unit and we're dealing with these parents that are being told one thing here and they're told that this is used who is teaching us in Arkansas and so that's even more of an issue for me then if it was just an out of state provider had just been in an out of state provider that was Hey they went on to New Jersey because there's a provider everyone goes to around here in New Jersey it was I provider and then they go to the center of excellence here and they get a different diagnosis I can understand not a whole lot better than if we are not on the same page as who is training us that I have a bigger issue with of okay where is where we falling short with this like where is is the one that and I and I totally agree with you that with the diagnosis to providers are going to disagree a lot of the time I I fully understand that but I do have an issue when it's who we are gaining everything from and we're not agreeing with. Let me interject something that's to that kind of goes back to the. To the top half and that's why I was asking is flowers the for what this is intended to achieve the sources that are cited on here. Are those the official. Sites that I'm not familiar with those with with that enough myself so I don't know and that's the pandas of the pandas PPN or.org but is that already but the organization that is the provider network I'm familiar with the literature that. Has come out from in. Expert guidelines and things like that that have been published I looked at what was on the side on the Stanford website. I don't believe they cite these but they might I don't know off the top of my head. I don't know if these are the it's sometimes even sometimes even in the medical profession saying something is a standard of care or something that can be controversial as well so it's not it's not always easy to say this is exactly specially in a in a diagnosis that's fairly that's complicated and fairly recently recognized or I want to do some little bit different and add Natalie in the conversation go ahead have a I was just gonna say I agree I don't know if these are technically standard of care because that is and if you but these are both reputable guidelines that are well known in advance agendas community to be followed okay. Or anything else on that debris thing is you want to add a number now okay. All right so the suggestion on the bill point we have been on is to add psychiatrist to the list I'm I'm just asking a medical provider masking as Lehman what would what would be the harm of adding psychiatrist if as you said a while ago doctor done they're they're not able to prescribe any way. Is there is there harm or what is the potential harm to add them. To the list to be included I'm I'm just asking because I'm trying in understanding. Michael do you have. I would probably have to run that by some of our clinicians were experts in this my understanding is that they don't themselves make the recommendation. For A. B. AG okay right that's that's something that within our clinic that's something that's done with with neurology okay. Kathy did I recognize you all go to go by a I'm sorry Kathy. That you're good at as is that one question you're gone back to the neurology so exactly how do they determine and neurology are they given stands as their brain waves transcendence is clinically diagnosed with basically onset of symptoms so I get that we have to go to all the specialists to get the diagnosis or you know their opinions on what this is but as a mom that has a kid that separates with this day in and day out. We hear so many. Different stories from the specialist as far as well you know we can't do an MRI or what have you because it's not going to show up so my question is. What exactly are the neurologist doing. How are they testing at. How are they diagnosed in. Well as I'm certainly not one that's. Able to answer the question how neurologist makes a diagnosis I would. You know San Santee if you're on the phone if you want to kind of give us an overview of what of the information and everything that's gather the specifics of how they make the diagnosis it is a diagnosis made by exception and it's done in collaboration with psychiatry and it's a review of the medical record review of of other testing that's been done and and other evaluations that take place including the evaluation of when the patient presents at the clinic. Sandy right being able to have the sexually. Do you follow up care prescribe and you know. The first protocol which is that anti inflammatory sister Rolaids the antibiotics antiviral once they you know. At the end of that the patient is still presenting what these massive issues. Or when cannot psychiatrists go ahead and do the I. B. IG. In 1990 not go ahead and prescribe it instead of having to send these kids in these adults 245 different specialist until we can actually get the help these kids need because the longer we wait the more these kids suffer and their behaviors become uncontrollable and for us parents it's a living nightmare and you know I understand we have to take everything supposedly by the book that these cases are not by the book I mean there's no book on pans and pandas right now on the treatments work kinda winging this as we go because my kid has been again he picked for the past 78 years so I I'm just curious because we we we have the knowledge some board and I'm thankful for that I just need to know what they specifically look at are they doing scans of the brain is there any change in activity in the brain that they can pick up on if in my absolute on that. Like to try to answer your question Kathy as all of you know especially the parents and the group. And handles both thank you for all the children will go returned to base line and then we'll get sick again and then there are horrible behaviors and then I'll go back to baseline so it's a waxing and waning up and down roller coaster and yes I hear the frustration of these parents every day. To use the example that was given earlier about our patient there we collaborated with with better health and yes my doctors talk to their doctors as we were seeing this patient. They presented differently when they were at banner health in Arizona right you need. Mizen we gave steroids and that is what about the door all the just doctor beer Pandian is looking for to see if the brain activity or the behaviors that are seen change with these other courses of medication. As I have said from day one our clinic is multi disciplinary and they collaborate. Completely to the point that if one can't have clinic the other one doesn't have clinic would be ideal because it's all of us 3 in there listening to gather. And then we step out and we talk among each other did you see a tech did you did you hear this did you and we all 3 discussed among ourselves and then the 2 of them decide what treatment is best and sometimes it is let's go ahead and call it either rule in or rule out because as Dr Dunn said earlier it is a diagnosis of exclusion and that is where doctor rainy way stand in this is true OCD or this is just obsessions or just compulsions. We we don't have that training but her expertise brings that to the table and so every collaboration every patient is going to present differently but the clinical practice education is what drives our treatment and sometimes as you said unfortunately Kathy it's trial and error what works for this kid may not work for that kid and we have to try. Remind us and we have to try the naproxen we have to try to steroids before we can go to insurance with the PA and say look we have exhausted our due diligence and now this is where we are with prescribing I. B. I. G. because we have tried our tiered method of treatment. So when we get to that point. Then it's full bore let's give you have you had G. let's see what we get. And unfortunately sometimes we need to do pre and post testing of the IV IG to see what is actively happening with the brain's activity as far as psychological test. And some of those cancer complicate. Yeah and that just a throw that in there in my my son is way complicated at you know I'm just you know I I don't want you all to get frustrated with me because I don't want to come across that I'm angry and that's not what I that's not how I want to come across any of these meet meetings it's just. I have lived this road we've already bearing Max I don't want to lose another kids of these disorders and I personally have been. Almost killed by my own child and I don't want hearings or care givers to have to walk down this path so. My passion for doing this is to keep moving it forward make sure we got everybody on the same page and realize that we can't treat these kids from a book I mean big thank you say they can be in one day okay we're having a good day it's just like it's like dealing with you know at an adult that has Parkinson's you know I mean you're gonna get what you get on different aspects of the different dates and that's how these kids president that's how the adults present and I just wanna make sure I haven't missed anything as far as the neurological aspect of it if you'll have 10 pointed anything in the brain activity I mean I just the sooner we can jump on these cases and get on the treatment they need we can get on to live a decent. Healthy your lifestyle no it's not it obviously but we just need to make sure that we're all on the same page and if we have a child or an adult I mean that's already got the pre diagnosis from you know 10 back to that they can come in here and work alongside them or you know the neurologist of the specials that we have to continue the care because if they've already been on antibiotics antiviral ensign's laboratories they've already recommend that course well we're at the I. B. IG states how long is that gonna take before we're able to get that going Shearer for those kids that are coming to see you guys are they gonna have to go through a battery of testing that they've already been 3 because that's 1 thing that I ran with my son Cameron he should still be saying doctor of the year we seen several times that my son he's 256 of the 26 years old and he's at a wall you know he's he's tired of going to go in we seen under all ages immunologists we've seen you know infectious disease we say now I specialize United heart specialist gastro in Tesco Dr we seen a mall and cameras at the point. He feels like he's never going to get better so why is he gonna waste this time and keep going and you know see all these other doctors and nobody's ever fallen through to continue the treatments that are actually need it is that making sense it is it is and to attempt to speak to one of the comments you made a minute ago. Any parent decides it's hard for their kid as you are even. After the fact that we want to work with because they want to partner with that. To speak to a diagnosis from the outside physician 2:00 hours to put it into perspective. You know you A. M. S. is one of the leading cancer hospitals in the United States however sometimes we don't agree and MD Anderson treats a patient different than we would. And we can expect each die each physician to treat a cancer the same way and so I'm looking at pans and pandas the same way in that I can't ask my docks to use their license to treat someone if they don't agree with the diagnosis and so they need to be able to do their own assessment and come to their own ethical treatment plan collaboratively before we go straight forward and again sometimes it looks like hands sometimes it doesn't and if we can't excluded or rule it out like some of the more complex neuro disorders. Like autism autism is very hard to will inter will out because of the underlying autism and so a lot of times we will have to watch that patient for a little bit to see what works what doesn't work before we determine let's let's try one time of the IV IG but again I can't ask my doctor to put their license on the line unless they agree with the diagnosis of the child in front of them. Do they do they actually have a one on one conversations with the other doctors you know I mean today I mean we were talking about collaboration all that I just wanna make sure that we have that open communication that whenever these kids come into the clinic that they know you know from a Z. what has been tried what the doctors have done and that they have the open communication with that. Currently treating physician that is turning over you know the care to the clinics I just wanna make sure that there's no blurred lines because like I say and in these cases can be so severe that we've already. He or any physician on the left side that wants to talk to my docs. Maddox made every overture to connect Dr dock with them either by email or phone and I've got 2 of them right now they're they're talking to my docks before their patient even gets near perfect you know I'm making sure that those are transferred and treatment you know it is in line with what we do and see what they're saying and yes they are they're talking to the docks if the doctor wants to talk to. Some if they send for work and it's they're done. Exactly yeah what do you want to collaborate absolutely usually they call me first okay talk to each other and I connected with the docks okay perfect thank you all right sorry guys no good healthy discussion good healthy. Moving on to the next point and I know some clinicians need to be out of here by noon so for 3 months of course of IV IG recommend treatment 8 a discussion on that. A re evaluation of 3 months. Including objective clinical testing any questions on that. And I think 2 through 5 or things that are already taking place I think they are just all include being added to the list of not correcting so any questions on. 235. All right any other open any questions any comments anything that should be thrown in for consideration. To the recommendations. All right then what I'd like to what I'd like to. Suggestion if the co chair agrees with me move forward toward a goal and objective. If you take the comments that were considered today taking backed your team if we could have a finalized response I'm gonna go ahead no I would I would say I will be happy to take the comments of the and the suggestions of been made in the input and will have some internal discussions with our team and with clinical leadership both the children's as well as UAMS. Okay well what I want to ask is and I realize conditions everybody's got a schedule got patients to seeing everything under like come back one of 2 ways within 3 weeks we come back for meeting and get the final or if you get what you determine his Team is agreeable if you'll email that Danley so she can push it out to all committee members okay because if there's agreement with what's been discussed today that that's good if there's disagreement we'll come back and have a another discussion maybe one bring into the team members with you for that dialogue will. But one of the things I want to make sure that we do with these guidelines I don't want there to be. I don't want there to be a sense that this is how we have to practice. I think we have to have flexibility with our physicians and and treating their patients for example it says up to 3 months is that going to be created expectations that there's 3 months worth of ideologies it's pre approved it I want to look through things like that I also want to look and make sure that in providing guidelines we're not restricting and we're not limiting opportunities for patients and patient families again that's something that's needs to be evaluated more more from a clinical perspective by those that have far more medical training than I do. At any response that by no means to interpret what I said as far as this is binding because I don't think we got the authority to do that number one but number 2 the my understanding correct me if I'm wrong the whole intent behind this from about to have Medicaid come up and talk about the rules that we just got through in Medicaid this is stab wishes. Protocol guidelines for opening up the ability for other providers to be able to see patients treat patients with an agreed upon set of guidelines so that if individual see patients outside of the center of excellence this is this is the collaborative bridge that will be put in place for that to occur because this point blank insurance companies are are trying to figure loop around and this is going to close that loop around and this also holds a standard expectations that for that to occur these are the things that those provider groups are going to have to. Agree to. While not binding them because we can't do that so or are we in agreement on that ours are disagreement or am I looking at differently than how you all would be looking at it differently. Senator I appreciate your comments we'll we'll work through this I want to I want to chance to take 2 steps back and look at it from 30000 feet and figure out the best way. To me the end of the day what we have to be respectful of payor sources at DHS and insurance companies. I want to make sure that that the physicians under involved don't feel restriction and then secondly I want to do what's best for the patients and patient families and that's my whole goal in all of this and so. I want to be hesitant to make any comment beyond what I've done all right and I'm asking for a commitment today other than I would like this you could if you will provide with the response of the team is or will book out a meeting 3 weeks from now to allow for a bridge clinical schedules to to have time to adjust if possible and then come back we may need a little more time than that but we'll we'll certainly. Certainly do what we can what level I work with you on that all right doctor done I understand your demand on your time because you're involved with the other well I'm thinking about really the the other docs there's not I mean they're booked out months okay thank you can't and because that would require moving patients and be scheduling people we don't like to do that sure and and I'm I'm only. Extending that in the event they would want to be here but if you all are comfortable Michael come back and be the spokesman I'm fine with that too Aletsch all figure that out between yourselves of that. Dr Dunn is not comfortable with me coming and speaking how much yeah yes. I'm just looking at this I'm just throwing this out but the. It seems like our goal is for other clinics in the state to be able to have a guideline for how they're working. In connection with you so maybe if we need to change the wording. The heading on this. I sensing that maybe you're saying you don't want to be restricted on how you're treating your patients but I think the goal of this is to allow others in the state to be able to start doing some treatments under your and and refer anyone I I and I utility I used our physicians as an example but I've I would not feel comfortable doing anything that a physician would feel would be a limitation not that I want. I just. I just feel like it's best to the physician feels that they have the freedom to I'm with you to evaluate and diagnose and treat as best they can so just for a little opportunity to work through it thank you out loud a little bit thank you. Okay thank Dr none one other thing may by then Mr right to be able to be on the call to her being okay. All right. Next. Medicaid. Name and title for a record thank you for being here. I thank Mr work what part of him services and Elizabeth and Division of Medical Services all right so we just recently had this come through rules you want to give a brief explanation of what it is and open up for couple questions please certainly if I can use brief kind of status update and then aspen's I talk about the specifics of the rule so the rule went before a legislature last week and was reviewed by the list the administrative rules sub committee and then by Legislative Council on Friday and so as of Friday we have filed this with the secretary of state and so 10 days from Friday it will officially be in effect and so this is the rule that is in place now as the lowest payment over the specifics I will notice looking through included the front is just a summary that we provided you and then the rule itself this is these are existing rules other being amended if you look at the language that's in red underlined that's what's being added to the rule and the thing that struck through is being removed so if you'll just let your are go to the the red underline language that's the language or adding specific to transplant hang on a second for the for those that are in the room this was done by Friday for us to get it where we can get out in time for the meeting we we just had too many limitations so mark if you will if you all email that to Emily Emily this pushed out to the committee members that are not in the room so that you can have a copy of it would go ahead and go forward with but just keep that mind the people that are on the zoom don't have the benefit of seeing it at this time help yes Sir my apologies contract go ahead please and so that that's kind of status consultor misdemeanor talk about the substance the rule. So just 1 clarification so it will be I'm filed within 10 days we have an effective date for Medicaid coverage on June 1 so it's not too much after that but it is a couple of days after that so just be aware of that and so as mark said this rule did go through we had no public comments and CMS determined they did not need to approve it for us to put it into a fax or not waiting on CMS on this rule we are ready to go on June 1 the rule itself is based on ACT 637 we do not really add any language to that I'm so we're covering IV IG and other other off label drugs used to treat pants panda so we did include the other off label drugs said that if something comes around that is not height B. I. G. it will also be covered under the same rule as it is under that act and then we also do I referenced the centers for excellence is that was referenced in the acting we do require that that treatment be done under their treatment plan and their guidance because that is what is required under the act and we do require prior authorization at this time for that to make sure that those requirements of the act are in place and I'm happy to take any questions okay in a meeting and may have give Michael back up to the table but here's you just hit up hit on the head right there in order for Medicaid to pay they'll have to be will patient actually have to be seen at the center of excellence or were they just have to be involved in the determination of the diagnosis or can you from your perspective what your determination so we have this and discussion of senator and so based on those discussions and what my understanding is as long as the center of excellence is authorizing that treatment so if they are working with the physician somewhere else have an agreement with them for that position to treat that client on behalf of the center of excellence Medicaid would still cover that that the center of excellence does have to be involved. And and the definition or the or the guidelines for how the center of excellence you've heard you set the room thank you very much for the rest of the conversation if a physician contacts a center of excellence in sales and they have their dialogue going on back and forth in the center of excellence agrees concurrence with the diagnosis is that satisfactory for Medicaid to be able to take care of the payment. So as long as they do agree with the diagnosis and the plan of treatment that would be sufficient for Medicaid to cover that the course of treatment so they would need to agree with both of those pieces the way I read the rolling Act from Medicaid to pay but as long as they agree with that and it's documented inside of a record yes we would pay that. What I think she may have just answered my questions but just to clarify so let's say I've emailed Dr ready OR Dr panda more likely since IV IG because he's the knowledges and we've discussed a patient and he agrees IV IG is the next step as an outside provider as long as I put in my clinical note that I have discussed with Dr panda from a CH and he agrees then I would be allowed to try to get pre authorization. It I think that's going to come back to I know there's a lot of questions about collaborative agreements I think for this bill come back to have how that collaborative agreement is worried between US provider in your M. S. because at the end of the day I think it's fair to say we to for judgment on the treatment plan to the center of excellence and assuming that they have the provider agreement structured so that they are recognizing you and allowing you to issue true plans on their behalf then yes that we would but we recognize that but since the since they're still that work on going on the collaborative agreement I think it'll help support. Okay so one of 2 things the. It is probably going to. Either there has to be a a clearly. Defined. Terms of a memorandum of understanding let's use that term okay memorandum of understanding backslash collaborative agreement and let's just be real specific center of excellence to nightly rate for if they get together and they work that out outside what we do with everything we just discussed prior to that. If they have that meeting you know memorandum standing collaborative agreement. And would they need to present that to Medicaid as having it on file so that the end is that going to have to be a case by case situation until we get get this resolved or we might not even need this if it rises to the level we would need this maybe for the purposes of Medicaid reimbursement we might need this for Blue Cross blue shield or other purposes. But I just need we just need to know what's going to get it to the level of satisfaction that you can do it not be fearful the feds are going to come back and beat you to a pulp. Right. So we would require that documentation that agreement to be submitted prior preferably with each claim because we don't we don't have any sort of provider specialty for that to keep on file to say oh this provider is allowed to treat this it's not so you know we have specially physicians and you can you can enroll as especially physician or specially APR in I don't need you to submit that every time you file a claim because you're enrolled as that we don't have anything like that for this so we would need it to be submitted to make sure that it verifies for each each client thank you were in fact authorized provide that treatment. That makes sense. Okay. Follow anything. Then what I would say and represent when you. Weigh in on this what I would say then is. That. That with Medicaid having passed rule saying we will we got to have this for other providers I think that it would if. It would be in the best interest. That providers that want to be in the game of the that that term providers want to be in the network would be in the collaborative agreements memoranda of understanding with you M. S. that there needs to be some discussions take place between individual providers and the team of of this the center of excellence to get that documentation that you need this is what I would say do you have any thoughts haven't heard exactly what I was thinking. Okay. Our. I know you are at the table Michael doctor done you have any comment on that or. Okay. All right. Anybody else. Okay we'll get it done otherwise you get that Medicaid is with the role were 4 we're good to go on the Medicaid side. Yes okay all right anything else from any other members on any other subjects that we discussed today. All right of members Emily if you get to roll tamely searching it up to the members on zoom everybody should have the power point deck thank you Senator for that and Emily pride type up a summary of today in the way of the minutes ended up to everybody and if you see thank you Mr communicate with her if you see something that we missed otherwise thanks everybody for being here and Dr Dunn welcomed Arkansas and and look for the future conversations on the subject with that were dismissed.