Arkansas PANS/PANDAS Advisory Council

sure she's a. Quorum considering those are joining on zoom and just for the benefit of everybody of because our screen is a little bit reduce because of power point which is fine but just up with everybody on soom introduce yourself for the for the record please. Joe cloud State rep District seventy one. Natalie are you on there. Yes Natalie Bradford position assistant. Okay insured for does see you on there. Yes Senator so tempered executive director board of nursing. And beyond that my eyes are so good who else is on the who else is on the soon please. I'm mad Brumley I'm a committee member okay. A collegiate Duke school nurse representative. We missed anybody. Right. The CPAP clinic. Okay and I'm sorry who else in. I was never raced parent on the Council. Okay very good everybody else we. Well don't listen Department bill nonvoting member. And we got down honey over here K. anybody else. I think we got a. Full slate then I'm a recognized cochairmen comments to start off. Just glad to be back together good to see you on the zoom and the folks here in the committee room so looking forward to what we can accomplish today thank you Mr. All right of we can get a Approval of the minutes from the August eleventh meeting place you can get a motion. Motion to approve a motion. Second. At that have okay any other discussion to the mention corrections embassies. All favor say aye. Hi. Post. All right we're gonna start off you should have. If we. Website. Okay you should have this the if you should have gotten email on this on exhibit C. which is the Center of excellence report that we're going to get Michael you're presenting is that correct and. Yes Sir I'll be presenting sandy Bradley is there at the clinic in our skews me sandy Bennett Senate Bradley is somebody else okay sorry. It is there to click we will also have. Doctors another doctor be joining us coming in and coming out that's also seeing seeing patients whose whose second B. Dr Spano I'm sorry Spano Spano okay. All members you should have this in the email that was sent out to you along with the agenda but if you wanna go up to the website you can click on it anybody not have access to it. I did not receive it. Okay. I did not receive it either. I do not have it be. What's the website. Okay all right hang on it's it's coming to you. For the record Mister chairman if it's Dr Stalin and not someone else is coming I was. Trying to speak from memory and I knew I had it wrong can you spell that for me please S. P. O. L. L. the. This is. While Emily sending that to you if you if you had a laptop you can go up to this website. And the agenda will always be on it in the event it should not get to you via email and if you already I'll give it to you. You can go up to W. W. W. dot Ark leg A. R. K. L. E. G.. Dot state. Dot A. R. dot U. S. W. W. W. dot Ark league dot state dot A. R. dot US when you pull that up you can scroll down it'll say Arkansas state legislature click on it and to pull up the website and you can scroll down to today's meeting and. On the one of the icons is the agenda and documents and you can click on that and open it up and you can see the you should be able to see the exhibits in the document there. And. Otherwise you should be getting a minute. She may have a questions about that or did you ever get that. W. W. W. dot Ark the lake dot state dot A. R. dot U. S.. And hit that which is our state legislature to pull up the calendar and scroll down to see today's meeting. And while Emily sending that out let's do this for a second time Michael you want to go ahead and get started and certainly Senator then we get on to the questions please. You bet thank you for the opportunity to be here and the opportunity to discuss what's taken place with our CPA center of excellence just as a reminder UAMS and children's hospital with the CPA the center of excellence were one of only a handful in the country the university of Arizona UCLA mass general law hospital in in Massachusetts with Harvard the Dartmouth Medical Center university of Wisconsin and Stanford University this clinic will has been identified for its need and purposes of not just to treat patients to assess those and provide a diagnosis but also to be involved in in research that will include an incident study to where we along with these other centers of excellence will be able to gauge. different the level of of diagnosis the level the number of patients across the country this is still considered a rare disease with fewer than two hundred thousand diagnosed each and every year in addition to what we're doing in regards to this incident study there is a training program that is taking place now that works not only with the nurses that are involved in the center for excellence but in addition to that they will be working to train fellows Center in second psychiatric and neurological. Residency programs across the country so it's it's exciting to see some of the things not only that are taking place here but are being involved in research as well as what's taken place to train physicians and nurses as I get ready to enter into the medical field sandy Bennett is with us today and she has a presentation in regards to the clinic the patients that have been saying I'm very excited to turn this over to her I've asked her to talk and give us an idea of what happens when a patient is referred to us because we're everyone understands that intake process and and sandy will be going through the numbers after that sandy. The morning she is glad to be back with you since August when I join you in August I was just getting my feet wet if you will with the clinic. We have. Got a little bit more robust with their intake process and in our volumes so it's been it's been exciting I tried to put together some of what you asked for at our last meeting and I'm excited to share with you the the way we've progressed past. Michael Gillibrand's must live. These are some of the same slides you saw before and these are the slide you'll see again every time that I present with you and the members will just continue to grow as we expand our volume to date the CPA clinic has seen twenty four patients and of those twenty four patients are Arkansas patients are eighteen of those outside of Arkansas are six. And you can kind of see the this sweeping at age of where those patients are coming from however I will I will say we have other patients that are already starting to to intake with us from from other locations because they have seen this on the web or found us through the you can that work and it's it's just exciting for them to. Share with me how they found that. And that's kinda what I wanted to talk about with you guys today we have updated our website recently. We have tried to pattern it a little bit more. Like the one for better health tried to make it a little bit more user friendly we have updated it with. Our information and a direct line to me and patients and physicians both when they actually call and get a live person there like I was expecting a phone tree or I was expecting to leave a message and when they find that there's a real person here thank you answer their questions and help navigate them through our process it's encouraging it's encouraging and so we we have worked out a lot of the the hiccups in the Kinks. Patients can come to us either by phone call by fax email and they're finding us all different ways I believe several of them are even finding history some of the chat on the Facebook page and that again is also encouraging. They you know it's every patient has a unique story. And it's been it's been very encouraging to have those interactions. Next slide. One of the questions that I believe that senator Hammer asked for last time was just see how many of our patients were plans and how many of them are not in the stacked grass so that's what I'm giving you here and I will continue to. To grow this this graph as we move into twenty twenty two and it's hard to imagine that that is just around the corner. And In in looking at our value of our percentages or ratios whatever you wanna call it. Yes it's still a rare disease and it is still a very complex diagnosis. The the pie chart on the on the slide. Explains the little bit more about how complex this diagnosis Ian's. So many of our patients when they come to us. Something else already going. And we have the. The challenge the opportunity whatever way you want to look at it in and helping to figure out what's really going on with this kiddo I want to try to explain to our patients is that that are that are clinic because it while at share our clinic it actually can start from the moment it inside. I start putting together the story I start having interviews with the parent sometimes I have interviews with the referring physician. I when I can I review the notes from their clinics if they've already had the work done and so it's a compilation it's not just that snapshot in time. When I have it available I used input from the school system. So many of these kids right now or home school and so I don't have that data for that information but when I can I pull that into the summer right so that when my docs see these patients. The Best Picture. From the past few months before they come into that to our business and that's to our visit as we discussed previously is a multi disciplinary business it includes our neurologist Dr Vera candy in our psychiatrist Dr Veronica rainy and myself when possible I am in the in the this state with them because the report in the relationship has been built by me. And there may be some little snippet of information they have shared with me that that needs to be brought into this clinic is that it helps give better insight or better scarification so that we can get the best diagnosis the best treatment and the best outcome for this family. Any questions. Sandy. This representative Warren here help me out one thing I see your pie chart here. And I'm good with everything what is a S. T.. He is spectrum disorder okay thank you. The okay go ahead. Are you a chart are you charting when you're seeing multiple diagnoses. We my question is how many of these kids maybe have. Blake hands pandas and AS the or and late that's one of my biggest concerns with some of this and how we're collecting data and I'm sure a little bit of my story being a parent but I have a child that was diagnosed a SD when he was younger and I kept bumping his symptoms into AST AST AD do you like this is just all ASP and by some of the standards of what concerns me is some of the standards of the clinic if we had gone to the clinic I don't think he would have gotten the pants misdiagnosis and I'm pretty sure he would have progress because you wasn't a very streamlined you get after a couple years of antibiotics and other medications he's been off of everything for years now As completely functioning Kate and society so I'm very concerned that we're still going to mess K.. I wish there was a better way for me to reassure you. All I can do is X. as expressed. How incredibly impressed I have been with us Dr panda and doctor rainy in the way that they tease out these diagnoses. As a parent of a child on the spectrum I hear your concerns and I understand. And some of this. Yes it's classic autism. But the way they tease it out better able to clarify. I don't see the mess. I'm sorry your you don't see the what. I don't see them missing the diagnosis of and we're pandas as a concern. I think the question was so could somebody have as you have it charted here. Could somebody have pan pan does but also have anxiety. Both in how does how is that reflected in the chart so that is not just those it's given both and we will have kids and I can't get into too much granularity out of respect for him thank you and but we will say. Yes this child has anxiety and OCD but he also has Spain's or she is on the spectrum and she has ADHD but they also have pains and so they're giving credit for the other diagnoses. Because Hanson pandas are diagnosis of exclusion so they have to be able to document those. Before they can say it's panzers candidate is in addition to these other things and you know that was right when you have a complex kid that has multiple diagnoses it's hard. Which is why it is so impressive to watch this team. I work this way because it's not just coming up with this diagnosis the family is contributing the family is a partner in this. There is an agreement of what is going on with this child. Before they leave. I will more questions just so the numbers that are represented on the chart like the fact that it says nine which is nineteen percent are dying us pants pandas are any of those same patients also the percentages in any of these other categories as well okay bye. Why the numbers in the pie chart will not add up to twenty four patients because there are overlapping diagnoses and so forth. And if you look at the nine that is what is reflected in in the the bar graph to you from two thousand twenty and seven from two thousand twenty one. And so. That is the diagnoses. Across the years or the beginning of the clinic. R. nine still have so many questions about the Go ahead this time will any of you want to call me ever. And I'll be happy to try that I would appreciate. Through. The nine they're listed as panda pandas are they true standalone pandas diagnosis by their sales. No Sir. Okay. Are any of them true standalone pander pandas. Diagnosis. Or they'll have been of some small into that granularity without potential breaches. All right I think you've got that is. That's when your comment sir on the left of the graft is we don't have the numbers yet to be that. Down in the weeds without violating HIPAA because you could get down to a specific case or I thank what five is the is the cut point. Okay all right represent one. Question yes Senate I know that you we show that we've got twenty four patients that have been evaluated so I'm taking that. You had a lot more calls than that so how many more or wanting to be seen. At this time our clinic value has increased you for per month starting in January we will increase to eight per month. And some of these are. Tell them that some of these are in person we try very hard for any new patient to be actual in person so that they get a better diagnostic and better. Interactive visit with our team. Hi eighty. I have a list of patients that I am in taking. All the time. And just when I think that I'm caught up. I don't know what happens if something goes out in the news or some Facebook something to get it and I'll get a patients in a week. But we have several patients that are at varying stages can take and I say that because our intake process includes not just getting their referral working out the insurance working out of its in state or out of state Medicaid. Getting the intake paperwork back from parents getting into a pack or packs and school if that's necessary doing a couple of phone interviews and all of this is done on other people's timelines in addition to mail. So you know sometimes I'm reaching back out to a parent three or four times to say. I'm still waiting on your paperwork yes still want to come see us. I want to come see you but in a little Johnny a little sis had something happen or little Johnny or little Susie is doing great right now and we really rather wait to come see you. When they get sick again. And so giving a standard time all right isn't feasible I tried believe me after our last meeting I've got a. Posted on my wall in here that I have scribbled every direction known to man NH's. I can't give you a standard timeline because there's so many individual factors that come into play. I can say that as soon as we can get them and we are and if that takes a minute they were using the time wisely that they're on that list for interactions between me and them to say are you seeing this and seeing that. Can you do this scale can you get this form to the the school can you take this from your PCP or your teacher T.. speech there Mr councillor you know I'm pulling it is many healthcare professionals and. Educational professionals as I can. To get a good picture of what's going on with this kid out and sometimes time is to our advantage. Mr. Matt go ahead. I just have a question for clarity I know you probably have more slides so I just is the pertains to this it did I hear you correctly that. You're unable to disseminate within a particular portion of the pie because of the fear of protected health information if we speak of five out of the nine four out of the nine were a hands pandas diagnoses verses a combined knows these. We have such a unique population. That based on the data that I am able to share if I shared additional information it would be too easy yes if anyone is familiar with a single patient to be able to tease them out and to pick them out of this and I. I think Lee I have to. Patience okay I would just request that we look into that I'm confused with that explanation when we have one this marked up there with satellite S. I'm just I'm familiar with how that would reach any sort of hip or and maybe it does maybe does a protected health information I certainly want us to be careful when they're on the side of that but I think it's important information and I don't see any particulars that would. I'm sure out of my ignorance the delivery chip so okay I'll be debate on that. That's okay and I'm glad I'm glad you asked that the only reason I a I did not find that one and if you'll notice it is right hi the cans can decide notices it is because it is a brain inflammation it is all in that same kind of category that I didn't want to lose. Because the the treatment questions that have come in to play it so often. He and so. It would be very easy for me to have groups and stuff like his pants Henderson had attend their. And The only reason I didn't was because it wasn't true criteria against Candace. Thank you for asking okay represent one. I wanted to and this may be something we follow up with but Kathy Puckett is under the weather so it had texted just to check on her and she did send me something that she wanted brought up said please remind them that Serra McLean at ribbon bill is waiting on protocol information for crisis patients when psych state is unavoidable I've been asking for that for a few weeks now Rivendell is willing to meet with us to set up a plan once they get information they need to take to their CEO so that's just something we need to work on. I will be happy will be happy to do that. Any other I got a few questions but any other questions from the members regarding of the of the charter the information on the handout. Sandy let me ask you this As far as the out of state reference referral center coming in. When how are the how are they. Finding out about the clinic in Arkansas when you interview them what's the what's the source as far as where they're coming from. The majority of them are finding is on the website which is the. Panda's positions. At work and we're listed as one of the centers of excellence like Mr cake referred to earlier the list and we're listed there and we're close to you know because of proximity. And it's a whole lot easier to come here than it is to travel to some of the other locations and so they call and they say will you accept us and I'm like sure and sometimes they have been these other places and they have the diagnosis from these other places they're just looking for somewhere close to establish care and to get treatment if little Johnny or Suzy has a recurrence. They're trying to get their ducks in a row and be prepared parents and the date they have found a house and so we're we're getting them into our process but since they're not in an active slayer we have a little bit of time to work with the state insurance that state Medicaid to to make it happen. And are there numbers represented in the numbers on the chart or they separated out. They are Mr cake if you'll go back this line please. All patients on these two two maps is represented in. The subsequent slide it doesn't matter whether they're in state or out of state their patients that have been seen in our clinic. Okay and this will be first subject in a minute but while we're on it let me ask you. In working with the insurance companies and Medicaid from the out of state referrals are you finding that does insurance companies. And that those Medicaid systems. Are willing to pay for the treatment including the IV IG or so far what what your experience. So far anyone that is needed I. V. I. G. we've not had a problem. And I believe truly that it is part of. Our notes when we submit with our. Application if you will to to be approved. Because it is so thorough and so multi disciplinary. That there. They're they're giving but again we we document very clearly the criteria that they're meeting. Okay never you want so far we. Okay Deborah go ahead I think I see your hand. I have a question I. I'm not a medical provider and so I think I can share some details of personal stories that I know but I do know of a family that has been diagnosed and they went off to the Arizona clinic and got diagnosed and then has done all the protocols here back in Arkansas and is trying to get IV IG through our clinic as well and then I'll then I'll do now so I have a G. is still a big issue I know Here even for people who have had the diagnosis and even try to go through our connecting clinics. Thank you speeches that I just know that the patients that we have submitted we've we've not had any issues. On on the in patient or I mean in on the in state patients are on the out of state patients you haven't had an issue. We had an issue with any treatment protocols regardless. I guess that leads to another question of how many times have you ordered IV IG. I can't disclose that. Mr chairman if if if I could contribute and identification of the discussion about IV IG we we've got a smaller population a clinic that is been up and running in its current form with its systems and processes for less than six months so I contacted the police foundation Mr Ryan to talk to him is there. Is there data available and he shared with media and Arizona where there clinic is up and running since two thousand sixteen thousand cases have been referred to them. The almost four hundred have been diagnosed his pants plant is. And those that get the ivy ivy ivy I G. treatment or less than ten percent of those. And so it's it's one of those a rare disease with different treatment protocols almost individualized to each and every patient and IV IG is something that is available it is utilized when clinically warranted by doctor painted a dark right doctor ready. So again we've. It's. The diagnosis is is rare White House that treatment for each case is is unique and one thing that were we're fortunate to have in this state it is the work that's been done at the legislature that allows IV IG to be more of an option that it otherwise would be but when it is clinically warranted and In the best interest of the patient we've been very successful in working with buyers. Okay so how about this can you have. The okay can you answer this question. AS IVI G. being used on any of patients. They've been diagnosed with pans at the clinic as of today. I believe a I yes there has been there has been the utilization of IV IG behalf now frequently I'm not at liberty at the beginning because of the small population but yes it has been utilized okay. Deborah did us do a follow up ever. Yeah I just have one other question in regards to that when it when you say two hundred thousand with the rare disease where these numbers coming from. The definition of a rare disease that's considered is two hundred thousand diagnosed cases or fewer there's an organization that's kind of an umbrella organization for rare diseases and one of the things that we're doing in conjunction with other centers of excellence in the pace foundation is an incident studies to where we can better prop properly identified and the number of cases this is the centers of excellence or or working together all across the country to to again be able to trying to identify. The number of cases that are out there. Okay so we don't really know for sure we only know the basis because people just started reporting on it as people are just becoming aware of that so I feel like even saying it's a rare disease which yes it is based off of clarification but on the other hand because we're such in the bottom ground of like establishing these numbers as as the big facilities are just starting to input those numbers I actually think it might be a little more why the worst thinking because when you even give a thousand patients were seen and four hundred were diagnosed that's pretty significant. Yes where it is and that's just one location but again with all the other person you know all the other. Cases in medicine that are out there it is a rare disease we were happy to be part of being at the forefront of of doing the research during the training with with fellows and nurses in addition to the incident study that we're doing that I think we're we're at we're the tip of the spear on this. So just in the heirs on a clinical loan they've of thousand. Referrals yes Sir of which only four hundred were diagnosed with painter pandas that's correct okay. And less than ten percent actually got the I. B. IG they were the others were treated. There's something else through through other through other means anything from cognitive behavioral therapy to to other medications that are out there okay. Are they were you have any other questions or anybody else have any other questions at this time. Hi I'm challenging my memory which I do often I'll call it a rarely diagnosed disease but of that rarely diagnosed disease it seems like meeting before last we talked about an initiative that was going to begin in which there was outrage in the community schools and other places where people and patients gather to give both clinicians and the families of people that potentially have this disease information on the clinic and other clinics on how to be treated where are we with that. We have been providing information the first thing is that we did was we updated our website secondly we've provided a new brochure for the pediatric cases that has been distributed widely across the state of Arkansas to through the health department I believe to pediatricians one of the things we have to do though is we continue to get the word out is we have to be able to have the capacity to take care folks if I recall correctly from talking dissenting we are currently booked through December and we're looking at we're doubling our capacity in January because we know just simply from our experience so far that we need to increase our capacity and so I'm. I'm confident that is as we learn more as we find out more not only here in Arkansas with the other centers of excellence that will we work to adjust and provide additional resource. It It is that the referred to yes Sir I don't. For those of you there joining on June you may not be able to see it but will get you one mailed out they brought copies of it today we can mail. Okay we'll get it we'll get. Yes ma'am. Can I ask a question sure. You said you as a widely distributed among Arkansas so I'm a family practice physician assistant and bedroom and have not received anything so do you have to be part of that you a M. S. A. C. H. system but receiving this. No ma'am we provided the information for and asked the health department to distributed I'll follow up with them and if we need to re issue the information again we will. The health department is very graciously agreed to distribute the information to all the people that are part of the network that they have that they utilize to distribute information. So I'll I'll follow up with them and I will make sure it gets done again what you are talking about these right yes Sir. That way I make sure that you get. Some delivered to your clinic personally okay how many how many you want. Okay I mean one's fine I'm just curious if I didn't get one how many others in the state didn't get as well doesn't mean we're right here with the health department and. So that's and if it went just one other pediatricians that maybe the breakdown if they didn't send the family practice. I'm just kind of curious well. What numbers were looking at. The one of the things we mentioned and I spoke representative warned about was is we develop strategies to communicate we have to be mindful of the fact that it distributing information and the potential for additional referrals or other we have to be able to take care function so guess we are going to continue to distribute information but I don't want it and distributing information I want to make sure that we're able to handle the possible referrals that come from and having someone route you know. In a in a need to to see about it to get in and impressed interacted not have a vacancy for a couple of months all right appointments like for a couple months may not be in the best interest again we're we're doubling our capacity in order to do that and continued we're continuing to be committed to doing more than. As we move forward as we have the availability. Represent one. Natalie I'll just follow up the in a course out of Tions of the state but I will coordinate that with you Michael. As we do that timing. but I do think that would be a. Good step and also a step for our. group that's responsible for getting the information out to the state so. Thank you representive cloud. Representative cloud. Yes. Do you happen to have a. It may not match phone number with the health part. Added that Gilmore to have his phone number. I do would you step off for a minute and call him and ask him. How many of the brochures they have distributed in and. Ray report back in a minute while we have some other conversations Let me. Hang on a second doctor doctor class really it Michael it was distributed through their network and it should have been distributed electronically and not by mail they have a mechanism Dr Thomas and may be able to identify a little bit better than I can about how broad and wide it is but we have asked that it be distributed pediatricians across the state. dot dot com. You need to that senator I I in my knowledge nothing has gone out from us I I know that Mr K. R. R. Recker health communication said that you all have discussed it with my understanding from her was she was waiting on something. To get finished before you senator so I don't know if they're there and if it went to pediatricians specifically through another route I don't know to clarify we don't have a way of of every you know a primary care physician in the state what what we do is we have good collaboration actually during the pandemic with like the state chapter they the other state chapter of family medicine you know the Arkansas medical society we can certainly send those to the I'm sure they'll be willing to send those out to their members but if that if that has happened yes I don't know about it so maybe we just need to coordinate a little bit off line and get that whatever the the material is that you were you were speaking about Mr chairman all all confirm right after this meeting and if something hasn't gone out I will be going out will be distributed if not by the end of today to those organizations by tomorrow and I was under the impression that that they had gone out and they very well could have I'll I'll follow up this afternoon since this meeting so okay What just so there's. Just so there's we at least when we finish me we got other stuff to get through on the agenda I think this will be a good when we have the discussion in a minute Amalek representative warned handle discussion on the subcommittee specially educational component of it this would be a a good place about the brochure and there I mean for those who they don't have the ability to. Is there any way we can get this can somebody email this to Emily required where she can email it out to the committee so they could say could you send a text message to somebody or. Okay because one thing up what you doing that. I understand capacity of the clinic. And if you send these out to a thousand pediatrician offices we're we're we're gonna have a problem and. Maybe we can talk about that represent worn in may when you take the chair for the educational we need kind of coordinate our efforts so that so that sandy there doesn't get two thousand calls in one day and we and we create a lot of animosity in the in the state Sandy what he's looking for that let me ask you this question how many phone calls I'm a referrals total into the clinic do you have so far. All of. That's hard to say. Let me explain why. Sometimes I will get a call and it will actually be an adult patient that IP that I. Directed towards the adult side. Sometimes I will get a call and. As we talk through things they will decide either to see us or not COS indoor not follow up. I can current I can say with all confidence. Currently in taking. About sixteen patients. That that have gone through the called the filtering process. Yes Sir. Except you need to send them an email. As all the the forms to fill out and gives them the explanation that is pretty much exactly what's in the brochure about I need your insurance card I need a referral this is what you can expect and so forth and so I have about sixteen that are on my touch base list that I'm. Touching at least every two weeks. And when you get all. Go ahead I'm sorry. There is an active flare or. Some other. Situation that is moving them up my triage list then that's what I'm doing and I am in constant communication with Dr Pandian and doctor rainy about okay. You've got November coming these are the four patients were gonna see we've got December coming these are the four patients we're going to see. This is what's happening in January. And we're just constantly. We assessing these patients and sometimes a whole lot of the time the patient that is scheduled to come in let's say in November that will say you know we're actually okay and mom or dad can't get off work can we take a December slot. In the loop and so that I'll pull somebody from further down the line up. It's it's a constant case of musical chairs. But I have sixteen patients right now that that are in some folder that are in my intake process. Okay. represent will okay did did did the. So when when somebody refers a patient to you. When somebody refers a patient to your pediatrician or physician's office that will let me ask you this how many how many the referrals that you're getting in or how many of the calls that are coming in are coming in just from the general public that have picked it up off the website or random information somewhere versus coming out of a physician's office or. And when we could probably go as deep as you want to like a school nurse do you have that segregated as far as the number of calls coming in and. I don't Because sometimes is simultaneous. Right out of state folks typically find me on the web. Or they have gone to another center of excellence that he said Hey you are closer to Arkansas did you know that Arkansas has a clinic. And so they'll come around the back door that way. Occasionally they will have that care started at one of the other centers. And then they transferred care here. And are established in our clinic for ongoing follow up because this isn't a one and done. They just want to be more locally be established. Okay a lot of our parents will go to their pediatrician and say Hey. I think this is what's going on with my kit that pediatrician will pick up the phone of their nurse will pick up the phone the call me. And we'll have a nice conversation about what is pans order they seeing with your kiddo and that's when I do sit and out the brochure that Mister tech is built by email to them sometimes acted the most of the time I email it and let them know. Really what they can expect by partnering with us for their patients. And. It would be a hard yes. To even say it's fifty fifty it started seventy I don't know. because it really doesn't matter. If I can needs to come in we need to see. And. I need to get all the stuff from all the places so whether a parent calls me I'm reaching out to the doctor get a referral if the doctor calls me I'm reaching out to the patient to get the exact work so. I'm sorry I'd have that answer well let me ask you this you're you're the only person in the office right. Yes. Okay the what the one thing I personally would like to see is. The number of referrals. That come from physician offices you know if somebody if somebody picks up off to wherever we start giving out these brochures and they call the number direct that that's one thing And into you can get more staff understand we don't want to put any more on you than you're able to deliver but the one thing I would like to know myself. Is how many are being referred by a physician's office. And when. And if they are referred to you by physician's office are you then constantly communicating with the physician to keep them in the loop as far as what's happening with the patient that they referred to you. Or do you have the time to even do that. I deal. Every patient that comes to our clinic I get a referral from. Whether it comes first or second is that what you're wanting to know. Contact me first. Physician have to give me a referral. And every physician that I see their patient I send them the clinic notes after the fact. So it takes me a minute because as we see more patients and we have the notes it takes a minute. Willie within like a month. Every physician that has sent me a patient or every patient that I have seen. That I have either a PCP sometimes it's a counselor sometimes it's a psychiatrist. However that patient tells me they want to know about their clinic visits. They get the big note every patient that leaves leaves with that after visit summary that at least has the. The short version of windows as they walk out the door. And it'll have whether they have three diagnoses or whether they have one. I will have all listed and what our recommendations are if they can take right then. To whoever they want to take it to. Hey sandy. But let me give you an example and I think this is where the senator is going with this I had a friend whose child is. Experiencing something on the wheel that you gave us. Don't know if it's going to be a pans or pandas diagnosis and I put her I called Michael Michael helped the in this family has an appointment with you okay so I think what we're trying to get to is how did how did how are these people getting to you so that one would be a referral from someone on the committee and we're trying to find out if they're just. Coming to you without doctors or if our doctors are actually being the referral source to you because they've heard about this clinic I think that's what we're trying to get to is how's the word getting out to these people about the clinic and so if if it's just. Individuals looking up on the. Internet. We're not doing a good enough job because that's to a charge I'm going to have is education throughout the state so I want to know that my doctors across the state know about this and know that they can call and referred or. We we need to find out how they're getting there so that we can better get the word out about the clinic so that I think that in my right that's that's part of it yes yes Sir. Okay so let me clarify please so if you're wanting that data moving forward because I can't go retrospectively because I've only had since June and to be honest half of them I don't remember what came first the referral over the phone call for the email share. But if you want me to start collecting this data meeting for. It's going to be January. Contact well you can contact from now forward those patients are going to be reflected in the data intelligent wearing February. That's great. If you're wanting some some classifications of was a word of mouth how did you hear about us was awarded well was it shall. Search whether is that a physicians to gesture it is that what you're asking me for. Yes ma'am we're how did they come to you the referral source. Okay well if you'll give me some patients might not patient patience but patience is in time sorry it anyway if you will give me some patients with getting enough. Patience to calculate that data I will do that if it's going to take a. Okay. Thank sandy. But. But what I heard your testimony also is if if if they have come from a PCP referral you are communicating back with the PCPs. As far as the status once they once you receive the information is that correct. Yes Sir okay and sometimes it is a. Councillor PCP or PCPs psychiatrist and there have been several that I have sent the notes to multiple providers because that team was sending them to our clinic okay members you should have gotten by now a copy of the brochure between Michael and Emily they should you should receive that in your email boxes as far as a brochure that was referred to a while ago Debra did you did we see your hand up for questions I just. Yes I have a question from like way back the conversation have going but I heard sandy say the beginning of the conversation that when the adults call and they're being forty nine as originally I thought it was all one hug who are they now being forwarded to to be processed. They're being processed through me but then they go over to the adult side and the nurse over there takes over the Kate Kate and sometimes I don't know the outcome once it is is turned over there. My co UK. A totally different nurse overseeing for adults one of the things that we have identified and we've begun we've had a discussion first discussion last week is the transitional what we've referred to as a transitional clinic the pediatric case that's no longer pediatric someone is. The they if they have lived a page there no longer being seen by a pediatrician Dr close your has agreed to see those patients what we're trying to do as we move forward is identified additional resources primarily an additional neurologist that would be working with them to where we can replicate these this system and processes that we've put in place for the pediatric clinic put it in place for the adult side. That is that is the goal for from which you speak right. No I I I know some adult patients that have got their doctor clear and I'm familiar with the practice over there and how that works as well and from my understanding he basically just as a consultation though and there's not really much continuation of. Things at least from what I've seen and experienced. Are you are you saying that the people that you know that one over to the adult side. Are getting process targeting senior could you. Say that again please. I'm I'm staying there getting scene but it basically is a consultation but there's not much to happen after the initial consultation like there's no direction for them I've even talked to some providers personally over there about like what clip after clip here does and I hold him in high regard for what he does but I was under the understanding that he just basically does consultation that initial consultation and then kind of people don't have much of a pathway after that they just try to get initial like what where it could ever go work DO but then there's not any follow up after that. Michael Yan cider. one of the things that we have identified is this this is a need that we are providing a service forward we're always looking to do something better and we're aware of that we're working with pace foundation and will be looking at the other centers of excellence two two disk to define. What is the right thing for us to do here in Arkansas in regards to these adult cases it so we're we're aware that we what we're doing and we're we think it's it's worked well in many cases in enzymes and hasn't and so we're we're looking to do better. Sure well let me ask you this do you think As far as duplicating what we're doing a children's location over to the adult because I go to you M. S. one certified as adult right yes Sir so so what. What is the. What is the plan as far as duplicating what's that children over at the at the U. I messed with the adult siders that something more that we need to work on legislatively for resources or what we need to do. Senator Hammer let me we have begun those discussions the specifics of everything that we need haven't been ironed out and we are anticipating an announcmenet soon in regards to a new directory P. R. I. doctor spell it is is involved on an interim basis there and providing leadership and and he is aware that there is more support that we can then we can offer again no slight on doctor close your all it's if we're going to. We see how effective. The CPA you clinic is working with with teenagers with kids we want to find a way to do that same process on the adult side. Okay but we do this up with the cochairs input how about the next meeting we have you think we could we get a scheduled out far enough that we can get get him on December get here to to have the conversation with the committee held out it was also seen on the adult we'll do the best we can to get it scheduled far enough out and get it on everybody's calendar and hopefully we'll be able to introduce the the new directory that announcmenet will be ready to be made and the new director can be here okay. Never anything else you wanna add on or any other questions to that. Now that that was just I just kind of curious where that was that okay. All right any other questions from the committee on this subject for now on the charter you should receive the flyer by now if you've had a chance to look at it any any questions about the flyer. Let me ask a. St ask you one question regarding the handout that has supply charges intervention for pans are only given for patients with an active flare. So the numbers are represented on the chart are for those that were identified as having active flare just would what do you what your definition of active flare. I manage the of the handout that we've got this CPAP volume. An outcome. Senate Haitians on the grass are diagnosed. Interventions are the IV IG and other things and those are only given for patients with active slayers. Is the status. What is active in what is just diagnosed. Mister chair go ahead Matt. Is the current structure just so I understand of the clinic that you all are seen patients. Once a month still in clinic is that correct. Currently yes Sir we will go to the clinic days in January. Are there will get thirty fourth Friday of the month. We've been able to utilize any sort of telemedicine yet. Yes Sir we have. It is difficult and we would prefer to use that for follow up visits. And were consultations with physicians. We are using Calumet. Bye bye a concern I guess I would say is I hear you're booked out through December. So if I've got a child that's actively flaring in my home and or office. We're looking at potentially sixty days in which we. We play musical chairs and we triage and readjust as we need to. Regardless of the chairs are the music were looking at one day per month so we'll go to thirty days the end of flaring. Is there a way the answer's no right now that's fine that we are able to utilize telemedicine in some sort that you all would be able to assess the child at the time of the flare in leave the clinician on appropriate intervention or treatment for that patient. I can't answer that but I would prefer to let my physician's answered that and they're both in clinic today but I can say that they have had conversations in the past with the PCP doctor doc and. Okay intellect. Okay. That is your question. Part would partially. Okay we do not want any child to. Suffer any longer than they have to in an active player. We just need to know what interventions that already been tried. And there are interventions that can be done. Before we get to the child. That when the doctor not has a conversation. Cares not been delayed. Matt to what in Michael you think look will schedule out for now if we can get doctor Ranier Dr panda. On the next one to drill down on the questionable deeper. Yes Sir okay. So. Seeing for patients a month is that that's what I understood currently one day we see for patients each one is two hours per patient and then we will be adding a second day in January which will get you up to eight patients a month yes Sir and and sandy how may do you have on the on the books right now to see what how many did you say I'm doing the math and transfer out of our out these patients are from being able to be seen. I currently have about sixteen patients that are somewhere in the intake process understanding that when you call. Yesterday. I'm sorry I can't hear you under understanding that what you have sixteen you may call them and some of them may say you know what we're doing better and that number is a fluid number that moves up and down. How many on average how many referrals are you getting calls let's just say inquire res how many inquire reason a week are you getting. Roughly. Again that's hard to say because some weeks it's. Multiple in some ways I don't have any. Okay and I'm I can I can say the words it's been a quiet weekend I'll have four calls that afternoon okay. There's no way to say. I'm just trying to think of if you got sixteen let's just say all sixteen of them are going to come here and double your capacity in January. What are we. We kinda need to be tracking the trade. Eight that are ready for that are to be seen next week and for for December the other eight are not even ready I don't even have all the paperwork okay they just made a phone call okay some of those I've called back two or three times but they're still on my radar. In that number sixteen. And as. Going to slip through the cracks. Okay part where I'm going with this is I just wanna make sure is a committee and as legislators we do due diligence in the graphene and the charting to make sure that if when we come into the fiscal session in January if if there's some help that needs to be given or when we get ready to come back into the general session that there's. We we've got the appropriate graph and charting to justify any requests that we may have. And and we can work offline on that Michael and we can come back the next meeting but somehow or another we got to have that. To and I and I understand you're doing small population. Thank. the nines was national pans pandas awareness day. And I can honestly tell you the week prior to that. I didn't have really anybody on the books that needed to be seen for November I mean I was caught up and I mistakenly said the words I'm. And then suddenly. Where this happened. And people are calling me from everywhere. And so I am I have been busy this month. I was busy before but I would it's it's a lot of new intakes right now and so if we had this meeting when it was scheduled before. Eighty two that I was waiting to see for November. And so it absence loads. And again so many things change with these kids. And if and if their PCP is doing interventions that are working. Sometimes they change their mind that they don't need to yes they have their own validation just by having conversations with. I wish I could give you better answers. Well and understand understand this. We. We appreciate the job everybody's doing and we know this is like a a new birth of the baby come in come in where we got to kind of get to sing up on its own two legs and get walk in and this is part of the raising process it's just that from a legislative point of view. If we can. Make sure we're getting the data to be able to project out what might be the leveling off point if there is such a thing because everyone sees brochures go out this other information goes out I could see you get really busy we just want try to stay ahead of the curve as much as possible to make sure the resources are there so people are waiting three four five months to be able to get into get in get seen all right any other questions at this point as far as the brochure or anything up to this point because otherwise we're going to we're going to move on to the next item on the agenda. Anybody in the committee have any questions. Okay we have run to Sanders. Who up you're just a casual conversation found out that her son has been diagnosed in the panda pandas and also is moved into the adult population and is talking of felt we would be appropriate to have common share her testimony kinda help us especially on the adult side of through the sharing of her testimony to factor of things she's got say into the into the discussion and also in a minute we have two that are signed up to come because they've heard about the panda pandas effort and we have joellen Tyson Williams a parent and also patient of that we're going to hear testimony from and then we're gonna have a conversation about the insurance and then we're gonna have a conversation up subcommittees and our goal will be known just for everybody scheduling purposes so you know what kind of time frame we're on all right and run it would you of state your name please for the record and under Rick maybe present yourself as a parent of a patient please. Thank you. Yep you want to go to read it's there you go against rent is that good okay that's good apologize my name is Rhonda Sanders and I appreciate you allowing me coming to speak briefly to you and tell little bit of our story we haven't my son are run to do me a favor pull it Mike about three inches closer for the folks that are on those and can hear a little better thank you okay and thank you to those of you who are on the same I know it's difficult to sit and listen to participate this way so I just appreciate the the effort that you're putting out to learn more about this and what we can do in our state my son right now is out almost twenty six years old. And back when he was a youngster are approximately around the age of eleven he had an absolute sudden onset OCD like behavior that completely took my husband not by surprise we noticed one day at the lake as we were there that he was Could make it to the edge of the lake because he was returning and stepping over routes that were in the ground fortunately my husband knows a little bit about psychology and things to recognize the signs almost immediately are within a couple of weeks time period he could not focus with his eyes he would look one way and another had lots of sudden movements are things of that nature we called out all the stops in order to get him into a clinic at Arkansas children's hospital in their behavioral health section to write bigger part what was going on with him are we had a wonderful psychologist there that worked with us we did a lot of research an issue at that time was very very nice. Around pandas and and what how it was affecting children the doctor there was very good with us and actually talk to us about the possibility of this being the issue there were is not are even nearly the amount of diagnosis capability back then that there is now but we did go to our pediatrician Dr Anthony Johnson who is a wonderful wonderful pediatrician our did the Tigers testing some things and did note that his titers were elevated. R. which I know is not a final. Proof of diagnosis but back then that was a beginning point and they put him on an antibiotic at that point in time. And and he really had some great success with it our we did our cognitive behavioral therapies we went to all of the interventions in the meetings are he continued to struggle some with it but over the years got it got it under pretty good control we did find out that flocks the teen worked best with him for helping him with that OCD behavior I by the time he was a senior in high school we were able to be almost off of all medications I took you more for the antibiotics for awhile for concerns over that and he did have a reoccurrence and employer in his sophomore year in college and dower has suffered tremendously for the last few years he is on medication for floor exiting are very high dosage avid that are. Works works hard to be able to contain his OCD behaviors as far as a formal diagnosis of pandas that was what the doctors came up with back at his early age of around eleven. All right he is currently are still seeing it Walker family clinic. so we were very excited to hear about this project apart the possibility of getting him to be assessed and look at the adult side I we were also very courage that just about a month ago we went to one of his regular prescription refills and the name escapes me right now of who he saw but it was the first time when we walked into that session that that position said I wonder what pandas is in is very real. Our it has been a consistent difficulty to get physicians to understand what it can be and even to know exactly how to diagnose it. as far as frustration level for us and he's been the difficulty in finding a consistent our position the struggle at UAMS is that they come and they're great and you see them for about a year or two years and then they leave and you're back to everything being treated pretty much as a standard mental health issue. Are and you have to go back through that pandas discussion against so having that clinic even for the adult side could be are just game changer for those of us who have sought the help for their children are that it will be a consistent clinic they will have all of the information that will know the best practices around pandas that will know the best ways to diagnose them for pandas that is not shall as our journey I could talk to you for hours. About the struggles that we've had but we made it we made it through high school we will ultimately make it through college in about a year and I can tell you that the children who fight it the warriors. They really are to see them every day live with OCD the anxiety you know trying to figure out you know park what can I do with this and it's just so sad and when it comes on so I appreciate the parent that is on I know that she has seen it and bought it so I just I'm willing to answer any questions that I have to offer I know you have a lot of good discussion that you need to a do I will say that early on they did talk some about the ideology R. treatment our office it was not covered at all by insurance at that point it was very new our and we did not do that. And I will be honest with you that we have not had a lot of discussions around cancer pandas for the last probably five years with the with his treatment plan but I am hopeful that with this with this change that we will be able to get back to having more of those discussions around helping him overcome this. You mind sharing if it's not too personal what medications. Are being he's on right now and and is it keeping it under control he's off to work sitting right now hi says it's possible eighty milligrams a day which is for any of the physicians you know that's pretty significant that was awful l'occitane has been the one that worked best for him we tried several different ones are in at this point we have not tried to go back down of because the symptoms do seem to reoccur he is managing it okay. Are we talk regularly about it to see how it stays gone how is C. D. as I can tell you that I can watching throughout the day I don't know if it's if it's gotten bad so we do is under control shall I say it is under control at this point in time. Any questions from committee members all right up thank is that you Debra with your hand up. Go ahead. Me. Thank you for sharing it's being another parents like at our stories matter and that's you know why I do what I do one thing you said that stuff to me that should stick with all of us is the consistent clinic consistent provider or not having to relive this nightmare over and over and over again and that's something that we really need to take into consideration of the council as we move forward with all of this is how do we create consistency for these families that it's not just about a diagnosis like yes we need to get to the diagnosis but for some of these kids that have been going on forever it's not going to go away so how do we look at that as a whole moving forward to make sure these kids and adults are constantly taking care of that constantly have a place to go back to what we're saying I mean yeah we're gonna expand to eight kids a month that really like wakes me up to a lot of these kids are gonna need care throughout their lives so as we accumulate more and more what is that look like for a bigger picture like what is that look like to make sure these kids and adults are taking care of in years your story points right to that because of my child to my child's not going to he had to die he had it for so long before diagnosed like he's always going to have some flashbacks like we're always we always look like we're twenty steps I had and then we're back again and so and that's a lot of these kids that do go misdiagnosed for so long so as we're coming up with ways of moving forward with clinics or even providers outside I know in the past we've talked about making sure primary care providers can follow up care but we need to be more proactive about that at this point and not just focus on the clinic we have to go back to getting back to the providers so that these kids are taking care in a consistent fashion because non consistency actually makes them worse. Sorry I just house and I'm not because I know what it's like eight. Thank you I would just say thank you as well you guys bring a perspective to it that. As we try to educate we can't you bring validity to to the issue and your part of our education process which that's something I'm being asked to help with so please keep telling your story because you you can bring it home better than anyone subcapsular thank you for being here today Sir thank you all for what you do the so let me let me ask this question how would we and and Michael you may need come back up table I don't know. How do we go about identifying how many adults are out there or how meet that have pandas they're classified as adults and. We we kinda need to make sure we're we don't can we might do the same thing to the adult clinic that we. Due to sandy for not careful as far as managing overload to the to the system. So it just real quickly can you maybe give some idea about how many adults are being seen now they've been diagnosed with panda pandas or is that so we need to figure out how to get to Senator All I Want to. Step forward and say we'll try the best we can to gather that information I'm not aware of a specific number and. I would anything would be just a guess I wouldn't want to do that But I I've I've. Greatly appreciate her coming forward and telling her story it's one that that needs to be heard and I know it's not an easy thing for you to do so thank you for doing that. Okay. Senator yes ma'am can I just add the hard part I think in identifying adults with with pandas for so many families once they hit adulthood they start trying to find their way in their path in life. and by the time they get to a certain age they have already been hi designed marginalized but in many ways they have they just found some way to adapt some way to get through day by day in reaching them it is either going to be an overflow plethora of adults that are seeking some type of help for mental illness that we are not structured in our current healthcare system to handle. or are the opposite is going to be they're not even going to recognize what you know they've been through we keep our son very close. Very very close he I still lives with us goes to college we are he is I'm so grateful grateful that he allows us to be a part of his care because of hippa if he didn't he would just be honest on. so that whole issue around the adult mental health care and identifying something like pandas I agrees it's going to take a lot of about of work. An effort to how do you even go about. Doing that. Okay just have to throw my I have been. Did any of the other members on the committee have or have a question got my color comment while we got Michael table. Okay so Dever to your point that is a drill down area we've got to we've got to continue the conversation into getting the consistency with the adult providers or with the providers they're gonna take care of the adult kids as well so point is well taken. thank you. Do you mind if I tell them. What else you do in your other life just slightly because of thank you will being credit I think will bring credibility to the conversation that if you don't know Rhonda is the director of of Central Arkansas food bank here in Little Rock does now state job but she's also in alderman for the city of Bryant and does an excellent job there as well so it just goes to show it affects everybody from all walks of life and and do appreciate your courage common chair and I think we'll probably looping you in on future conversations if you will I will be more than glad to help any way I can okay all right thank you. All right Mr Williams we see sitting out there but we want to hit one or two quick points and and then we'll get ten seconds okay can you hang on. Okay thank you would like to do is if you all look at the legislation that's in the attachments if you went up to the website. And of this is land a identify where you're going to come in on the insurance side of things okay. On page three of the legislation that was passed. And and I know they're breaking read but let me just for my thought process is a health benefit the health benefit plan that is offered issued or renewed in this state including a plan offered by risk based provider organizations established under Medicaid provider led jadi out a shall provide coverage for off label use of IV IG to treat individuals diagnosed with pediatric on cute on set and it goes on says or both on or after January first twenty twenty two under patient specific treatment plan established by the by the center of excellence. Can you I wanna make sure I'm interpreting. I wanna make sure interpreting right and have the conversation because of and Michael you may have to help recall or members of the committee but thank you but. Best I remember once we got the center of excellence set up and we got it to the point where it is so that if the referral came out of the center of excellence that I V. I. G. was the recommended treatment. That the insurance companies and if I'm typing remember have also Medicaid would be responsible for paying can you can you. The answer might group or individual coverage you know your Blue Cross and so forth and it also will apply to the state health plan this state employees and teachers plans and to all to all Medicaid and to the to the past plans so that that is who will be a governed by this regulation now the this will not apply to self funded plans for self funded are recipients which are regulated by the by the feds of so that they will not be of the now those usually of the employer group you know that has a group plan that that that chooses to do self insurance in the usually have a third party administrators administers their claims it is up to the group itself the employer itself to to determine what what what is covered in the plan and something that I'm I don't know if you know some of our larger employee employers you know like your your walmarts in your Tyson's and and your you know major employers there might be some I don't when we we don't regulate those so I don't know specifically whether they're planning covers or not but you know there may be some someone might want to bring to bear the and and make them aware of this and in some cases they will be likely to to go ahead and cover. All right so the. An investor member the January first twenty twenty two was to allow us time to get the clinic set up to get the processes in place and get the wheels turning which they're turning so effective January first twenty twenty two if. The if a if a patient comes out of the center of excellence or recognition out of the center of excellence that IV IG is treatment then we have triggered the start date for the. Insurance companies Medicaid that you refer to excluding the original plans self insured That they should expect this to start paying for the treatment of correct and we have a we have issues in it is still needs to be of it's it's on that probably on the agenda either this month or next we have a promulgated the rule which is really at it's it's a it's a sure it's so short one or two page rule which just just reiterates what's in the statute and the you know and gives enforcement and and state and I think provides for some penalties for failure to comply then the other I'm looking right now I can't I can't remember I think it's rule one seventeen but it's it's the the proposed rules on on the at the website and you know we send out notices but I didn't hear anything we didn't have I know we we had the we didn't we didn't have any any opposition to the rule it was it's pretty pretty cut and dried you know when the statute says with the statute says and and it required us it said that the insurance department shall promulgate rules so we we promulgate a rule which basically reiterated what the statute says okay. any questions or comments from any committee members on that. Senator Hammer yes ma'am go ahead. This may be an out of turn question and if it needs to be first off to another topic we can but. So I know this bill was a new bill But this only this allows kids that go through the children's of excellence it doesn't take care of the other kids in the state I mean I'm not this point they're seeing for a month. in January they'll seek eight a month and so that's leaving a lot of kids without reasonable coverage which is what I thought the original goal of our council was was to provide coverage for all kids of the State of Arkansas not just those going to this one. And so what are we got in place to expand this to include. Nine nine children's patients. Let me let me restate questions make sure I'm hearing you right your question is. What we do it for the kids that don't go through. The center of excellence and get get the diagnosis because is your concern that we've got. We've got too many to run through two small the chokehold and and what are those kids going to do if they can't get in through the center of excellence until like March or April is that is that part of your concern. Yes and I mean I've been fighting for these kids for four years now and I have patients that. That need treatment and I can offer it and so and that's part of the reason I joined the council was that was our original goal and I'm not against the clinic and I'm thankful where they're done but. It I'm just I feel like we kinda lost track of our goal with this last bill. It only takes care of a certain number of kids not all kids in this debate. Going back to the conversation when we were trying to get this bill through which I don't have anybody. With the insurance company in the in the loop today but one of the obstacles we we faced in order to get the legislation through was to get the center of excellence established as a clearing house in order to get the insurance companies not to oppose the bill try to get it killed so that we could at least get a foot in the door to get reimbursement for the insurance I'm I'm talking about I'm talking out loud here to your point. If. I'm just come point blank I thank one of the things we need to have discussion about doing his. Are we going to expand the center of excellence to be able to take in other PC peas that have met the criteria. In order to be able to get more kids scene in a quicker period of time and that I mean that may be a discussion we have to have in the next meeting because that probably needs to be about a thirty forty five minute discussion but. I mean in my way of thinking we're going to look at how to expand the capability or measure the capability of the center of excellence to be able to see these kids in a timely basis so if you got some it needs C. I. V. I. G. they're not waiting three or four months to get it and the damage is done. And and. I think that's the discussion that needs to be had all all hush known open up to my game but wants to weigh in. I would quit it is is the the I have questions okay Hey I was saying look at the end I. B. I. G. treatment is so basically right now the only place that is available is that you M. S. the is that true now I can be at any rate shall correct me if I'm wrong you can be. It can actually be administered by others other than the center of excellence is just that the way we set it up was the center of excellence you have to go through the center of excellence in order to have it paid for to get the stamp of approval okay so can the the center of excellence can coordinate with other clinics throughout the state is that correct to to provide maybe provide treatment maybe at satellite offices and that was that that would that may be able to pay you back on that's just that's just an idea. Hello well let me just open up to Mike to anybody else's interpretation. At. Then I have a lot to say what and I know a lot to say today but I I want to backtrack us like in this conversation because I've had a whole lot of questions from day one of when we initially had the very first bill signed the objective was for us to come together as a council and have these meetings and the center of excellence wasn't even a conversation until after that bill was fine the very initial bell and so the whole point of the council was we were supposed to sit down with these insurance companies and like come to a table and find mutual ground to come and collaborate but somehow this other bill has passed through and made it so that made it a much tighter door way for things to seem to flow through it was so I guess there's a lot of questions there for a lot of us especially when you're walking with so many of these families right now that you know how diagnoses for years and can't get treatment and then them having to start over all over again at the center of excellence doesn't make sense. I'm not ignoring them read I'm reading the the bill I'm not ignoring you anybody else have anything you want to throw on. By. I'm gonna have to leave Mister chair in just a moment but before I do I would like to say that and I think I'm looking at one of the. The final but it was to provide for insurance coverage for treatment of those with pediatric autoimmune of psychiatric disorder associated with streptococcal infection in pediatric acute onset neuro psychiatric center. So that which I believe was our main charter I think the center of excellence plays a great role into that but not an exclusive role. And so the exclusivity behind that is what ward the optics of the exclusivity is what concerns me greatly I also want to say that exclusively we should be looking at the I. B. IG is treatment I B. I G. is a portion of treatment for this disease I feel like if we wait thirty days plus with the narrow door that was described. That treatment becomes broader and broader is damages done for patients that can't be treated. All in the beginning stages of this disease process that's probably what concerns me the most in the without being dramatic. Some of people will make you to that point if this is the model. That we have exclusively wore many believe exclusively. And we expand upon it a hundred percent which were about to do go from four to eight. It's going to take us years before we can even have a hundred people are saying within a year's time what that tells me is this disease will always be defined as rare because we're not diagnosing people that need to be diagnosed in treating those who are to. My main concern lies right now. Senate Manges interject sure. When a patient is identified and referred to our clinic. Our first step is to. To encourage them to number one get the infection treated. And get. That under control. Because that is the first step in treatment. And unfortunately sometimes that is a ten day course of antibiotics followed by either any histamines are not inclined towards. And so the treatment protocol so much if it can be done before they come see us. But again that is something. And I'm and I'm overstepping my bounds as a nurse. But that is what is it what my physicians have done. When the P. C. P. not a specifically. So for anything other than IVI Gee that would be ordered by any physician anywhere to. Get treatment for a diagnosis of pandas pandas. What has insurance company not paid or reimbursed for so far. Senate everything with us has been covered I can't speak to other people. But I know with the pardon my intake process with these families is number one what's going on with your kiddo number two. Is your position on board and what's being done currently are they currently in treatment you know and if if they're being managed. They may take another week to get it seen where somebody that is. Totally oblivious and we don't know what's going on they may be seen sooner I don't know I'm not saying that this is how I do things I'm just saying. I don't want you guys Leding today thinking that works Leding patients out there not getting treated while they're waiting to come to our clinic. They have a PCP they have a psychiatrist and I was like colleges they have somebody that is caring for this kid. Thank you. Represent one. Senator Hammer recognized at answer questions from an outsider's perspective sure. I can tell you As far as insurance coverage for my patients besides the IV IG being an issue the majority of the issues we have sometimes is read aloud coverage although lab is not necessary for diagnosis it is used to roll out a lot of other things and so that's the thing that I've heard or non coverage on my end and just to speak to other PCPs and inner street the basics for sure as a B. C. B. I do often the the reality and I'm not sure how much of this is known but the reality is in the State of Arkansas there's a lot of PCPs not willing and so that's where the breakdown comes from as well. Represent more. So the question I have is. Can. A physician is not tied to. Our. And spenders clinic. Prescribed by the IG. And it be covered. By insurance. Senator Warren can I answer that. Yes mail. So I can tell you that as far as yes were allowed to order it as far as coverage is very minimal I have current I know I do know tricare currently has the burden for one of my patients I can tell you I've recently had denials from two or three different wrote we cross plans. and I'm about to try United so we'll see I'll be able to report back on that in a couple of weeks okay so I'll take that a step further. Is the. Coverage. Any different. I mean because of that. I'm taking when I when I get the numbers that out in Arizona thousand cases four hundred diagnosed with pandas pandas in only or less than ten percent get IV IG that's forty. So. Is the. Decline percentage. In our state right now any less for any other doctor that it is for the center of excellence. I mean it and the reason I'm asking is because. If someone is truly treating someone. And they're being prevented from using IV IG. I'd love to amend the legislation. If it allows for more treatment but also understand the need for the expertise that we have with. UAMS and children's. But. I don't want someone not getting treated because. They're not able to get. To this clinic. One thing I think might be helpful and I don't think it's a breach of any patient privacy Is to extrapolate the information of the twenty four patients saying those of which should receive treatment it has been sent infirmary embarrassment what those were use and why was medical necessity and appropriate treatment for those patients covered there and not if a primary care physician in office and if it's because it's stamped with the approval of this letter of excellence then that tells you that those carriers are going to look at that is why in they won't cover it is a primary care physician office I think that's just some. Fundamental. Information that would be very helpful answer those questions all right let the damn what's insurance commissioner's office have a comment glad to see that ms Mr case come come come to the table because this this this relates to the the language in this is actually language in the in the regulation which is what's Mears language in the this is in the in the rule which mirrors the language in the statute says that the. This was medical provider to see. Perform the tongue but I I. G. I. B. IV IG is that medical performers in association or collaboration with the center for excellence so I was curious as to what kind of outreach programs maybe they may be if there were physicians throughout the state that wanted to be able to perform the services if they could somehow. Contact or collaborate with the centers for excellence at UAMS enough there could be some kind of an outreach in a process by which you could get you know certified or recognized by the centers for excellence to perform the services. Hello. We're happy to work with and collaborate with anyone secondly doctor paid in and doctor rainy Dr paid in when asked specifically the question about IV IG every patient that has been presented that clinically meets the criteria for I've each IG has been reimbursed. everyone of them and so I think that speaks to the rare of the rarest of the diagnosis as well as to the the treatment modality that being said we. We've made so much progress and we know that we've got so what was so much further to go we've seen twenty four patients in six months which is. More than double than what we've seen previously we are working to as a part of a center for excellence network working to document verify incidents to where maybe this is something broader than what we have thought it was before we're involved in training physicians in training nurses to where this can be better diagnosed more quickly than earlier on And so it's. It's obvious anyone and everyone that that knows that when you work in the in the rare disease spectrum there's always more work that needs to be done and we're committed to doing that if if that means finding ways to better collaborate with primary care physicians certainly will work I will reach out with primary care physicians but I again I I just think this is there are there are different aspects of this that we have clearly identified that we need to do better on we're gonna build on our successes as we look at the transitional clinics that are needed for those that are moving to adulthood and you know we it is been identified that those in crisis we need to identify some better options for those those are two things that we're committed to doing we've done a lot is we've done it well and we've got more that we need to do and we're committed to doing. I just want to say I'm sorry procedure Rohit. I want you to know that you share. Hi segment go ahead represent one I greatly appreciate what you guys are doing I do not want to take from that. I just know that the. And yet at least when I was working on this legislation was to make access as excess will as possible not to restrict so I'd say we're on the same to represent okay we're on the same team we we just need to make sure we're all rowing the boat the same way at the same pace to get us where we need to go. Matt was that you meant to go. Clal doctor Klein. Yes Sir just just a comment for the cochairs to being or possibly consider just reading over S. the six thirty nine that exhibit P. two on today in the very last sentence the Insurance commissioner shall develop and promulgate rules for the implementation and administration of this section. I wonder if to help with some of Dr Bradford stressed rations it would be good for us to hear from the insurance commissioner if ideologies covered under the center for excellence but not in Dr Bradford's plan a wine I'm not sure that I understand the need for education or we're being able to prescribe at one place and not another place and have it covered. I can speak to that is in both the statue of the rule you know it specifically talks about in in collaboration with the center center for excellence so that's we are you know we're limited to the statutory construction there so of. You know if if you had a doctor outside of the centers for excellent who. Could collaborate with the centers for action then it would become. Right some of the. Some of the history on the discussion when this was being. Worked out. One of the things that was a concern with the insurance company was that and I don't the and just this does not place anybody. On this committee okay or on this commission that I'm making this comment about but one of the concerns that the insurance companies had was that if you had PCPs out there that were not knowledgeable about paying or paying those that they would just right I. V. I. G. which is a very expensive treatment that they would just write a dog that they would write a script for IVI G.. And it not have a vetting process and also they would be have a bunch PCPs round the state that would be right in this the didn't really have a working knowledge now. As far as anybody on on this commission and I'm speaking specifically to you Natalie don't have that great concern that was the concern that was expressed by insurance company why they wanted the January first St work in their vehicles time to get this done. I think the key word is and and maybe this is and we've already checked with staff as far as the next date that we can have a meeting But I think what we maybe need to do and the rule is is that are out for public comment. Then be in the Senate chair rules what we could do is when that comes before us. If we if we modified that in committee would have to go back out for public comment at that time. Let's check on that if you don't mind will work on that because what I think one of the discussions we need to have is what defines collaboration. And and that maybe could be the the gateway Ford without just. Turn it loose to everybody there's got to be some checks and balances so that and I I'm just speaking as a nonphysician here but you don't wanna be I. G. being given by somebody that doesn't really have the expertise and deal with this especially if they're maybe not a believer and and they're just throwing it out there there's got to be some checks and balances but I think what we need to drill down on the next committee and we can have some discussions offline is what does it take to get that collaborative bridge between the PCPs maybe that are working in the clinic. But that do have an understanding. Of a panda pandas in the benefit in the event they got a cute cation the office I'll just stop now and open that up for. But I suggested that possibly UAMS in the center for excellence could could develop and I hate to use the word credentialing because that's a very specific of reservation that's a term of art but you know to of to make for for you and for the centers of actions to make sure that there are you know the protocols are followed and that the the the people that the providers who are actually providing service outside in the local communities are properly trained and of knowledgeable about the the condition and the tree. Comments from the committee members. I know I agree like I guess I've just been confused why we haven't had conversations like this where it came about where we. Heard what the insurance commission and wanted in the insurance groups wanted so that we formulated something so yes it could just be given free league but also so it wasn't so close door so that there was more fluidity when the ability to use IV IG when absolutely necessary because again I understand what you're saying that you know we don't want just every position writing that prescription because they shouldn't be but I do think there was a middle ground that we needed to find before this. Well I think we're in the midst of that middle ground in a I think there is a pathway Ford and now we've got the discussion on the table I think we're gonna find. Yet January twenty first that gives us. We were we've got to work with the insurance commissioner's farce the rule just quick history this is required that the insurance commissioner's office define what the rule is we've got some flexibility in there but we do have to stick. In close proximity to what the legislation says we don't have the ability to create legislation outside of session that doesn't exist already. Okay any other comments from committee on that. And we're gonna have a can I just say what sure. Go ahead I was just gonna say I mean as far as the insurance concerned about not knowing or not qualifying I thought that was the point of the committee that was myself and maps and doctor rainy and doctor and that's to get the guidelines which there are guidelines and I agree a hundred percent of the guidelines as well as conversation with doctor any doctor panda we all agree on the got the the definition of the diagnosis As I'm just a question that may need to be brought up when the insurance commissioner is involved in the conversation is why is presenting documentation that they make protocol Why does that not use their concerns because I thought I was the point of our interdisciplinary. Committee was so that we are all on the same page in the state. Are you asking that we that was that would be fine with us is as far as you know as a as hang on one second of. At your vote against a judge Mike to the. Certainly certainly have no you know that I don't I don't think that there's anything in the in the statute or the rule that of that prohibits of a privilege that that would be that would be what we route would recommend that the that the centers for excellence work work through this and just make sure that of folks that are the providers are providing the service out in the state of you know of me to meet the protocols to make sure that they are of their qualified and knowledgeable to provide service. To what before our next meeting what I would suggest is. We'll do a dish. A sub meeting if you would between Michael UAMS put Natalie in the loop and put in charge commissioners in the in commissioner's office in the loop and let's have this worked out for we come to the next meeting and see if we can't okay a thread the needle on. To bring bring in of bringing representatives from the carriers as well from the major carriers in the state as well but that's but that's your prerogative okay our. Part any other comments on that for now. Okay. All right let's do this in more appeal to represent worn were I a up discussion about the About the educational aspect in the sub committees and what I'm talking about is the combined just bringing those subcommittees into the committee as a whole not try to have a subcommittee means but let's just have a conversation of as a committee sure we can we animal yield to him because he's going to be responsible for that. Represent more. Thank you Mr chairman. This is a. An area where I think we we've got at limitless possibilities I I'm going to tell you about the. One educational opportunity that took place I'm in hot springs a lady whose child a couple that are no real well their child has got an appointment with the the center here it children's very soon the. They had a their son was given an assignment he had to do a presentation on something so he decided to do it on pans and pandas and his mother help team. Invitations were sent out to all the administrators at lakeside school and teachers were invited and people from the community were invited I was invited and it was great they're probably thirty people in the room and a great presentation on pans pandas was made by the mother and the son and people learned about payments that day and the educators and teachers alike thanks the the parent had this with a lot of the teachers anyway because the a person on and it was just a great educational opportunity of course we heard from a couple of parents today I think that's a great way to get it out I would love to get a basically a scripted presentation like that where parents can take it members of the committee can take it and get out in the community to share that but I was just really please that without my even knowing it we already had an education. Seminar that went out into the state but I think we've got the real opportunities speakers bureau that could be formed but get this information out and people who are closest to it you have such an impact when you speak so. But I think that's something we could coordinate with our center on excellence and then reach out to start reaching out to a lot of different places throughout our state and make sure that the. The term pans and pandas is not what is that it's something that people begin to understand in our state so that's the direction I would like to go. Mr chairman. Comments from a committee members. I just have one more question and we brought up at the beginning about Kathy packets response with revenue now and how they've kind of been waiting for us to make a move so that we can is there willing to become a state safe place for kids with this diagnosis and get more more aware so can we make sure we add this in to whose role that's going to be and how we're gonna move forward with that and as someone I will really quick brief my story my son went through a window when he first got diagnosed at the age of eight and they first had their awareness of cancer and is because of him and started learning and they've done phenomenal with some of these kids and I would love to collaborate with them so that we do have a safe place for these kids okay that that's wonderful and up while I was reading that I was getting a head nod from Mr kick so maybe the three of us could get together and meet and figure out how we're going to address that would that be okay a Mister K.. so let me put that down as a note to get with you guys before next meeting and let's figure out a pathway for that. Yeah because I also have a relationship with McLean and she's been phenomenal with trying to help in this area for these kids we can include as well. Right any other comments for committee members on that. All right we're gonna finish up today which winds would you come forward with your With Tyson please. Thank disco put a bow on the packages flowers what this is all about in. We're trying to get to. What we are getting to. And members. While what they're gonna share their testimony look at December seventh at one thirty is the next meeting time. December seventh at one thirty. And. I know it's kind of hard to make it work for everybody but that's that's our earliest available date and we get it in the first part of December so we have time to work with the insurance commissioner's office. So all right Mister a wish winter would you up if you all push those buttons in front here don't turn red. Yeah. When. Thank you. All right if you push yours again Mister Williams please sure would you all please state your name for the record and recognize you sure testimony absolutely senator my name is Joel Williams this is my son with me Tyson Williams he is currently a patient with miss Natalie Bradford and he is that has been diagnosed with pandas. So. So this is. Just a really kind of strong issue for us and there does do my heart's in good to actually hear the council talking about the real issues that we're dealing with and trying to get proper treatment for this AM. For pandas Tyson before we start seeing signs of this was the lead in the school play I was very outdoor active trial to like to go to multiple different things it was very social and things like that but since and it was kind of a weird occasion when this occurred to us because of how happened in correlation with the pandemic and everything else so it was very tough to kind of figure this out of he started becoming very aggressive and violent they were things that were bothering him a lot not all the cases of where the symptoms of pandas you know he was going through every single bit of the OCD all these communications but we were so trying to figure out what the issue was that finally not the first I know speak on was the NDT and then course before so that was not the case in which he was put on medication trying to treat the needy and these medications were not the proper thing for thankfully though relatively quickly were able to discover that he. Was possibly pad pandas and after saying appointment with is now the Bradford. We were able to actually get that diagnosis and realizing the truth once we did he started on this antibiotic treatment and it has been saying quite a bit success so far we do know that we can say something I'm so sorry so you don't miss Natalie said that my case was like plane it was no question it was black and white yep it is yeah. Okay. That's like so with these treatments though we do know that he still has quite a road this fight is to to get to that new normal to be able to really function be able to go back out and do as a means to the I. B. IG treatments are definitely part of our future more likely that being said you know. We've been able to see with a little bit the treatment him coming back to us on normal cells and that isn't very and join you that that's my art so good to see that cry you know what I am but ninety seven for the committee thanks. But. My biggest point of being here today and to talk to all of you is simply the fact that if this happens to us and I am tired agree I understand that it's a rare disease but not to us. It's every day if it happens to us it's going to happen to somebody else and we want every possibility to make things easier for everyone else so they won't have to struggle nearly as much as we did hopefully. that being said you know we really would push off with that show all consider the fact to look at the outside sources to kind of help us out with the diagnosis of pandas and to really push for that insurance you know to cover I. B. IG treatments because those yes not everybody is going to have to have that but the those of us that will probably do. That's all I've separate can help is incredibly he recently just got a seven shot as well knew that because he was having some real issues I read a lot it did it was a big anyone else but. It was for two weeks after that he was R. O. Tyson. And it's exciting to see that I think with the help of also a we have a counselor that's helping them as well the different issues and and really is becoming a strong thing. I will be glad to and answer any questions for you all but I think you know this is something that we really believe in one and one for the best for all of us what type of shot that's what type of shot did you say you can seven. Did you. Thank you for sharing it saves me and other family yes absolutely it's a pleasure to hear from you to ma'am. Did that your insurance pay for that so far or at least okay so far it's covered everything and we have Arkansas Blue Cross blue shield okay very good. Forget. All right a questions from the committee members. What's that thanks for coming to speak out there was no hip of rules violated today by the way you came of your own free will and we did okay this is our choice to be here today we did it because we do want the best thing for Tyson analyze I said before want the best for anybody comes after us to forget. Thank you thank you Ansei Tosh yes it might be a little long but. It took. So I was diagnosed with PMDD at first the medicine did help a tiny bit but it wasn't enough and I need to different medications and all that stuff and then We want to miss Natalie. And she said it was black in law why it was right there and then they give me the right medications and everything went right and. the only thing that really happened is that late. I have read is every once in a while but not as much. And they got more further and further away through the league like they won't happen as often they would get this bad but at first it might be a little an intense if you don't have the right medications stuff. So I think that's really all wait there's one more thing. Okay so I described it at first as a RC truck remote control. Remember. So there's a certain amount of steps. but like my. Deceives mental disease you would get to the controller closer closer and when he got to the controller then everything went haywire rages and all that are described as senator was about. Sixteen times every six every bad thing that happened sixteen times it'll gradually build up and then you. And that you have more control at least two hundred at you for your. And what you know Tyson you're the reason why we're here and you're the reason why we're going through the process that we are so you're to be commended for coming out to speak publicly want you know we want you to know that we want to know that I'm actually happy that I'm here good we're happy you're here to. All right anything else restrains no Sir unless you have any other questions for us a questions comments from committee I see a hand I can't tell who it is but go ahead. Hey this is a letter from the school nurse representative Catherine if you don't mind me asking and I'm a nurse I'm at the high school level but is there something that you wish that we knew this school or that you wish that we could get out to teachers and staff to watch for that would make your school day easier or anything like that that you can think of the other kids that might be going through it you have my not meet at school. Yes actually. A. my parents talked about like if it gets too stressful and stuff and you're right on the edge and I'm about to blow up and kind of like maybe. What kind of like a break free. You know what I mean yeah. A little closer you can gather your thoughts and regain control maybe. It is okay. No that's all I got to say about that. Also that's good though thank you buddy. That's good input. Any other questions from committee members. Okay thank you all for being here and we hope that you stay engaged with committee because we need people there on frontline telling us what they're going through okay come anytime you you'll miss school for the senator yeah yeah okay we're doing a history lesson because we're going to get or the capital there you go the. All right anything else on it anything else from any other members. December seventh. At what is a one thirty one thirty. Everybody got that. All right it will be working on the follow up information to to up good good prep for the exchange thank you all for being here with that were German today.