* Arkansas PANS/PANDAS Advisory Council

All. Can see me. Yes that is. All. Can see me. Yes that is. Yes Test. That's not it thank. Now saw. Alright members of let's get started thanks for the tolerance my. Daughter had some surgery and that again report under there so sorry for the delayed thank you all right first of all We're going to try to respect average time today because in in somewhat I apologize it being late in the afternoon but also we got a workaround some clinicians that you know have schedules to keep in we actually had some other legislative meeting schedule but they got canceled and we really didn't want to move this around too much because it gets too confusing and there's a couple things that we need to take care of I think one I think you're gonna be glad to hear what you gonna here today but number two there's a couple matters we need to take some action on and with that I'd like to recognize cochair Dr Representative doctor cloud today you getting thing orchard Dr class. All right so here we go that's here opening comments if you're looking at your agendas needed a motion second to approve the committee meetings from the March ninth a committee can I get a motion please. Anybody in the room this on the committee get a motion all right get motion from doc sharp section over there guess second. Any any discussion about to minutes. favor say aye. All right imposed thank you all right Uh we're gonna get a report from doctor Smith the director of the a psychiatric research institute over EMS documents if you come forward if you would please state your name and who you're with for the record please. If you would pull it down push the green button there to tillage green my name is Rick Smith G. Richard Smith and I'm the director of the psychiatric research institute UAMS if anybody would like me to put my mask on I'll be happy to put it back on but I think we're socially distance far enough I think we're good good okay. So that this Senator asked for a date on the CPAP clinic at it you you a mass Arkansas children's hospital that is moving along it is not is not moved along as fast as any of us would have liked we've been side tracked a little bit by covert nineteen I think we met probably exactly a week before we started transforming everything. Offer code nineteen and but the clinic is coming along some kids have been seen according to the protocol they have not been seen in the multi disciplinary fashion and that's been through scheduling arrows and problems that we've had in trying to have the manpower to get the clinic up an organized and rolled out it's now ready to go we have three Kids ready to be seen a week from Friday and the most disciplinary clinic on the neuroscience clinic at children's hospital we're excited about that all the pre work is being done they're ready to go and that the parents are ready so that's all good news there is a flyer that's on many of your desks you're welcome to distribute that we we eventually will give you a new one that will have children's hospitals logo and you and messes logo bos that takes an international conference to be able to get both logo's on the same piece of paper bill facetious but it's not an easy thing so so that's that's ready to go the importantly the phone number is going to be the permanent phone number voicemails can be left there those be answered probably that day sometimes the phone to be picked up when we have people there the death that's a dedicated email address and there's a fax number on there as well and that outlines the material that What parents can expect put refer referral sources can expect and with the kids can expect one of the things that is different about this clinic is from some clinics is that weeks we do need for the child to have a primary care provider to be able to help us with the treatment and provide us with information and to some pre testing. I'll be happy to take questions or comments. Right a couple questions and we got a questions off the panel with regards there there has been some confusion as you mentioned about people trying to get into the clinic yes Sir all the actually seen one that was from northwest Arkansas correct yes okay we saw one we house we've seen other kids to yes and and now we've got we've got three more they're scheduled to come into the clinic there will come into the multi specialty clinic next Friday a week from tomorrow. And of a two one one I'm almost out recognized ms pocket first then we'll come back next few questions sure I misspoke hang on a second your. Is your yellow light flashing. No longer flashing just don't touch it should help. Right now you should be able to talk if you like don't touch a green light if it's all just good start hello Mike doubt should hi I a cat the packet thank you got a question for you it does state on here that you are doing children and adolescents younger than twenty one I'm here to advocate for the adult population because my son is twenty three and has pants we're happy to see him doctor clothier and doctor rainy we'll see him over at the psychiatric research institute and we're happy to arrange that at any at your convenience well the is I've been very interested in this area for multiple years he sees all are complex cases and we can see him as soon as we get on close their schedule which are to be in another within a week to two weeks okay do you have any information concerning that particular clinic that we can pass along to the adult population with onions I don't that will develop it bits of is going to be very to somebody very similar I mean we need to do we do evaluation entities to be pre work done that's the laborious saying is to I'm sure you as of mom have a have stacks and stacks of records and we need to get those wrecked copies of those records have somebody knowledge will go to those records extracted for the doctors so they don't spend today having to go through the records and make sure and then if there's other things that in this case doctor clothier would want to work with your son's primary care physician to get those in a timely fashion prior to the evaluation okay thank you. All right duck club. Thank you Mr chair so doctor Smith the I understand what miss pocket is saying what about other adults out there that are affected if this is going to be the the brochure the fire that that restriction to twenty one and under are we doing that well this is this is a joint program with Arkansas children's hospital children's hospital it's my understanding that the medical director is chief medical officer is right there I think they stop for first of seeing kids and eighteen case may see some kids to twenty one so it's a different clinic and just a different place and we are also name it differently the sea for this is childhood pediatric autoimmune self a lot that the but we see people with himself off of the all the time and P. R. I. so we're happy to do that will this channel them into doctor clothiers clinic. Follows sure so. My question is how the information gets out if if we're going to put this out about the child who. Do we do we also have a mechanism to put the information out for the we will be happy to develop that okay thank you yes we. Wait Leslie. Okay So the doctor Smith if Leslie. If you will your would you anticipate developing a flyer like this would be complementary shepherd be geared toward the end the older population yes Sir okay and Leslie once you get that as expeditiously she could if you'll send to Carol for staff then we'll send it out to all the members committee we can push it out through our respective social media if we can if we can do that that rural yes the club. And a little housekeeping Either doctor cloud or I were here when the decisions made so please don't fault us on this or any of the staff the way the system works on the microphones if you want to speak push the yellow button and it should start flashing and when you do that pops up on the board and I know that you want to talk and then what I'll do is I'll recognize you and I'll push your name up here and that group that green light will become solid green don't touch it don't push it because it'll automatically go hot at that time by the same token you might wanna wait till that green light is off if you want a mumble a thing under your breath because there have been times of people have done that and being a hot Mike it gets heard so anyway doctor sharp did you want to respond to anything if you will push light now recognizes that doctor Smith said there. Yeah my name is Greg sharp seem over children's I'm also under all of this Based on my full it pull that Mike basically we do primarily see patients at children's as you know up until twenty one years of age because it is a children's hospital we do see adult patients in some circumstances if it were a circumstance where a clinic was not going to be provided to you a mess in there was a twenty three year old I would personally approved that we would see that patient but when there is an appropriate alternative and I think we can come I think we have the capability to combine the interaction between these two clinics to provide the same services in places with the same protocol would you agree that familiar yes Sir I think we I think that'll work just fine that so Mrs just so it's don't get to confusion out there because the Speaker cooperation can one phone number. Suffice and whoever handles the receiving of the call. Iraq to where they go so we we don't get me make your work yes Sir okay that's a U. M. as number so we'll make that work okay degree will look sharp that is I think the the nurse it's going to be overseen the coordination of this clinic will be S. are you and that's nurse and so that would make it very easy for that individual to Coordinate direction to either clinic that great all right Miss rice. I just want to ask If a PCP is not on board is there anything in place for making sure these children get the treatment that they need to the protocol of well we do we need to help by the parents funded PCP that can that is on board and they just need to we we we don't have the resources out in the community to provide the primary care work and somebody. Not much to what we're learning now is of much of the treatment can be handled by a primary care providers A. P. R. ends PA's and Physicians so will will work with the family to try to help fund a PCP that will Help the child or the adult. Follow up to that so. If somebody calls into your clinic and they said. I need to refer my child but but the PCP I have right now is not receptive not willing or whatever are you able then to receive that child without a referral from a PCP we're we're able to receive the child we're not able to evaluate the job because we have to have the cooperation of a community based physician because we it's just not feasible. Given our limited resources to bring the center the model it's been developed over the last ten years through the network to the pace network Sort of bills on a PCP relationship and if we get it if this becomes a regional program which the network is expecting we can't really take care of a kid and southern Mississippi or northern Alabama from little rock directly we need somebody close to home. Okay is it unrealistic to expect that we could. Develop a network of. PC peas. Who are not going to have to be of convinced that we're dealing with something real that if that maybe they could be referred to if we had a compiled listers at on real certainly no that's realistic and we were hoping to to our office also hoping with the if if we're able to have the funds of to spend a considerable amount of physician time doing physician education so that we have a larger group of primary care physicians who understand the disease that I mean that's why the kid had such a good outcome from northwest Arkansas as a pediatrician knew about the disease knew what he was doing and got him on the right antibiotics quickly. In between because we're gonna talk about our subcommittees today but I'm just you know spit ball here between maybe the subcommittee helping develop who that network might be and if we are able when not if but when we get the nurse on board is that something you think possibly that could fall under the nurse's duty or who currently see that certainly I would see that they can the parents to make the call whoever the even the person could make the call if it's an adult could make the call and have the discussion and A that's done all the time just to say we we need a relationship with the PC lead you to have a relationship with a primary care physician and will help them find one I mean we have a we have we have networks within you a mass. A roll of providers we have lots a regional providers it may be that it's just we just call up one of our regional providers and asked them to assume primary care responsibility. Okay. And also Mistrust redone yes thank you followed up what I needed. Sorry. Up and also one recognize we've got some individuals that were able to be here and have zoomed in so if you all have questions. And I know there's a couple on the phone to just jump in and announce your name and I'll stop and get you're recognized or if you're on the zoom just wave in between the three of us up here we'll see you all have any questions you want to ask or anything you want chime in right now. Matt probably. Go ahead Matt. I kind of a two part question if I may First off the show my ignorance it in the spirit of that being. Our team work with the community based position. Is there a algorithm in place on us. What to do for your clan. just back to the. You at age. Did you feel. Yes eight in this what steps are pre requisites before calling the clinic and what to do what number to that piece of paper excess the net so could I get somebody to email it may. Certainly the the. The are required pre lab work is part of the initial package that we send to the the parents and we sent to the primary care physician we can send you the packet the phone number for the clinic is on the flyer that was distributed and I don't I gave all mine to Senator hammer so somebody could just read the number and Matt could get the number it's five to six something. Yes it does exist in electronic form by chance sure and I think it does ms. So it's going to be sent to that's gonna be sent to the senator and then can be forwarded to you Matt. Thank you doctor and then or to to my car. Questions last statement I just want it to be brought to the. I mean the very existence of balance is eighty now in. To double down on doctor Smith earlier about sanity to the clinic Is there still the thought of seeing how telemedicine may work in treating and throughput for these patients. I'd I think yes so I would expect you all to know this but in psychiatry at UAMS when Covin hit we converted within ten days to an entirely telemedicine except for people that procedures and people who have Inpatient stays I think the the clinic the multi disciplinary clinic in person is going to be the the one thing that we can't get around to be able to do that because you do have to see an examine the patient and all that and that's just really hard specially on neurological soft neurological signs so hard or a logical signs does require some hands on so we'll make every effort to. Get the patient in but I think telemedicine can facilitate that we may run into a problem once CMS or. various other payers go back on their open ended nous of telemedicine visits but hopefully that won't be completely reversed because it's been very helpful for us. So yes we expect that anyway yes Gregg sharp again I was going to add a couple comments one about the The nature of the clinic itself and and the telemedicine issue that doctor Smith we you know what happened with co that is that we we were typically have in a very small number of telemedicine clinic patients in general it children's and we ramped up to seeing a couple hundred today into code crisis so that actually was pretty good stimulus to get our telemedicine process rolling and one of the things that I I could see it happening here as he mentioned I think the the initial visit it's best done in person especially in a multi disciplinary format but I think there's a definite potential for subsequent follow what management and that sort of thing to be done with telemedicine we've even been using telemedicine connections in the home again the question is will will that still be allowed close code they loosen the criteria for that but as you can imagine if you if you know if you call me with your child and I could see your child in in the home environment and see what's going on that could be very beneficial the other thing about the the the PC P. I agree with doctor Smith as well I understand that sometimes a child loses their PCP on one side or the other if you will most insurance programs definitely Medicaid and our kids require a PCP for us to see a patient as a consultant. and the one thing I would add to that though is especially if If the patient was from central Arkansas or northwest Arkansas we have general pediatricians in our pediatric clinics that chilled that the to children's hospitals and if they did not have the PCP we can make that arrangement so we could in that circumstance we could also provide a PCP with an organization. Matt to get caught up. Yes thank you okay and just for I'm doctor sharp I'm a keep your my Cotter as long as the system will allow me okay so anything you will see a we have children that way we've got open dialogue let me ask you to so on the communications side for move on we've got this poster and then there's gonna be another poster that that we're going to get from Leslie that we push out staff will get that out to all but they're back committee so we could start doing this that brings just. Down to the issue of the nurse you referenced because as I understand where we are right now you've been borrowing a nurse from another clinic that has been working and as things are picking back up and trying to resume some sort of normalcy my understanding that nurtures time on demand but nurses going to get greater to probably look this way okay Cerner's sorry yes okay yes we've we've had some minor excess capacity and we knew this was important so we've Part time it. moved to one of our nurses from the UMass campus over to our facility at children's and she's been working over there and helping gather paperwork now but I think you're aware that We've had a number of financial shortfalls at UAMS with co good and everything's gone a lot tighter including the. Reorganization where we lost fifteen executives so everything's just really tight right now but we're still gonna do the clinic we're still going to see to it that it's done we need the money will go faster if we have a nurse full time nurse but we're gonna work at it. Right which right now the doctors I mean it but as life got the nurse there you got a borrowed nurse there but the problem with that is as that nurse gets pulled back your would have to re educate a nurse. Was what it's looking definitely cut is definitely complex without a full time person who kinda who is the glue to hold it together because we know the physicians don't really hold things together very often they go from one. One person to another we need we need the glue. Point well taken now throw in here about the up because I was informed of doc sharp the thing for me about a clinical trial now that has become available yes there is a clinical trial that will be open to the to the pace network of clinics and perhaps perhaps other sites but it's been preliminarily approved by the FDA it's by octapharma who is a manufacturer of European manufacture revive the IG and the the trial has been in large from the one that was going to be in an H. trial so that clinical trial in Arkansas will said with Arkansas children's hospital research institute and that'll be the host for the clinical trial on will manage the details of all that and for those individuals that need IV G. who qualify according to the media be two different protocols once protocol in the clinic with the other protocol is whatever the clinical trial protocol is. that will That will come to children's hospital and then a C. H. R. and I assume that the B. I G. will be it ministered in your and fusion clinic that sharp that would be correct yes. So and that's an outpatient clinic crime and typically we typically goes I don't know it depends on sometimes ivy ivy trees doses are traditional ways to give them divided over five days we commonly do it over total does over two days four depending on whatever its truth being treated but will with the with the research protocol you follow exactly the protocol there's no deviations so whatever they would tell us to do as far duration of therapy but it can be done outpatient you don't have to be in patient to get the infusion. And the cost of that is covered by cross that is covered by the by the of pharmaceutical manufacturer they paid children's hospital. Okay. And. So even more critical that the more. patients we can get into the clinic the greater accessibility. That that kids in our region would have a chance that's gross correction and frankly we're because we're have stumbled a bit we're a little bit a little bit shy on and take to qualify for the trial so we're going to be working over the summer to get the whole bunch of people saying so that we have availability of the trial it we will not here on the trial until September October. When you say we will not hear what you mean well one not here a final approval the FDA is going to give final approval there has to be non disclosure agreement signed with all of our investigators and with a C. R. are very standard highly regulated phenomena that that happens that's why there's a whole ACT Johri research institute infrastructure to handle things like this so it's a pretty. It's not complex as much as it is regulated highly regulated. Yes basically about. Crossing every T. indicting every I in research protocol and nowadays it's that is extreme If the if the The pharmaceutical company has to get everything approved by the FDA first month selector sites. and so it's not as if just everybody wants to participate in the trial. Is chosen and so I think have an organization of the clinic gives us a greater likelihood of that. But we are very well versed in running clinical trials of my I don't are neurology section has about twenty clinical trials are running presently for various disorders and we use the pharmacy pharmacologic clinical research unit with nurses and do this all day every day to help us run the trials and do them appropriately and we can definitely handle that part of the. But a key component in the cycle is you got to have that nurse in order to be able to yes Sir we were just we have to have the nerve to have an efficient clinic you have to have an efficient clinic to have enough people for the clinical trial right so there's just a whole series of things that are dependent upon. The nurse yeah we actually have clinical research nurses that would actually run trial and they would be available Basically is approved but that might that will take a few months but not sure we have to get the clinic no no no we have to go to a clinic nurse going so we get the people. To be able to participate in the clinical trial yeah the point I'm the point I'm trying to make is that. We would actually have to people that we would actually have to clinical nurse who's organizing the clinic but she would not also be responsible for running the clinical trial it's really the point I'm making. All right few questions miss Butler. Natalie Bradford. Of. You all right hang on let me get miss Butler and then we'll come to you and they were coming to miss rice right miss but okay and my question kind of goes back to the template I just thought of it so I'm sorry I'm step in just a minute and that I was just curious is there a link or like a website or something that in case parents wanted to look at a little more information that could maybe put on here too we can we can agree about we can develop that is there's not one this develop that we're keeping secret yes it's a good idea for us to develop one so we'll we'll work on that any you know that would just kind of shows some of the symptoms and criteria and stuff like that to be in the clinic. Fifty. And if you get that did you get that done Leslie concern that up to the staff you don't mind and we get that pushed out to everybody great okay all right Natalie. So I have a. A statement and then a question I'm a little behind as far as going back a little bit the PCP issue I just wanted to make a note that there's a difference in a PCP being willing to refer to a specialist verses of VZV being willing to carry out the treatment of what is specialty clinic recommends as reading these guys for two years I have plenty of We need to be the referrals that they're willing order to send the referral to me that many of them are not related to continue treatment so I know where does all this there's a. you'll have a network of VZV is a joke and educate and create but I just want to be sure that just minutes but out there with my experience. And then but my question and was what company did you say the clinical trial was through. Clinical trials through octapharma O. C. T. A. P. H. a R. M. A. and I don't know what which company and which country in Europe it's based in. Did you duck sharp you will respond to you look like you're yeah the only what I was going to say is this there was an article in the handouts today this article from neurology that was just it's a very short term relievers an abstract from April fourteenth issue about the benefits of ideology and pediatric acute onset or psychiatric syndrome and that study was sponsored by octapharma so and that was really more of a pilot study because it was a double blinded they basically took a cohort of patients and everyone got treated and they looked at the response and so the ice is I'm assuming that the clinical trial if in order to get any kind of FDA oversight approval it must be double blind placebo controlled trial So but that is if you refer if you have that hand out that will give you the information on the on the pharmaceutical company. And that that that is on the way up which I know Natalie know about that but But those hand out should be up on the on the website under the agenda for today. That would you have anything else you want to bring in. No I'll be honest I'm Mister doctor sharks that because someone was. Over I can over I've been hearing. But if he was talking about one of the articles I I've got those if they're the ones I sent in yeah the article for neurology that was sponsored by octapharma. So the same company. You can get their information from that. Thank you. All right miss Russian. yes I am a numbers person so one of my questions is is the clinics still planning on doing a once a month seeing patients. And based off of that do you know what the number is that you need to see and through the clinic in order to qualify for this trial. I to answer the. Well the center the the the first question first of we're we're gonna put as many sections in of the clinic as we need to. As we have is we have referrals so right now the plan is to start with one half a day Per. I think per month but when we have more will put two sections on will put three sessions on the doctors or they're they're ready to do it I think the space the doctor sharp will make available to us to be able to do that so I I don't think that's going to be problem I think the issue about us getting rolling is there's If there is an exact number that we have to have seen. I'd I don't know that I think the but the power house behind this whole clinical trial is not only octapharma but it's the pace foundation and we're one of their a clinics so I don't anticipate as long as we get up and running I don't anticipate as having any trouble qualified for the study to be a study side and I talked twice this week to Paul Ryan and the head of the pace foundation about that issue so I don't I don't think there's any question about that yeah I would add the way that's typically done is that one of pharmacists pharmaceutical companies going to sponsor trial in their selecting sites they don't necessarily have criteria as ex number of patients or anything like that that the publisher tell you they could day's date send us a questionnaire and ask is what kind of clinic do you have how many patients do you see how many do you think you'd be able to roll in this study except so that's the information they're looking for and then they make that selection on that basis. Okay thank you. On the we we've we've had some folks try to call and get into the. Clinic and they were told to clinic was in a in running yeah. So if. We get this circulated out or those that have called an express that to us if they try to get them re entered into the clinic they should get that I should function com office after that if they get that answer okay all right but but that number right there should be the first point of entry yes Sir okay so for those that maybe try to reach out got told clinic was an up and running yet. We just need tell that it's a it's it's it's it's that very complicated to get a new clinic running is because our organizations are and it's a small clinic and it just goes can go a lot of ways that's the reason that we had some patients seen by our individual experts and not of the multi disciplinary section because I got stuck in another clinic which was a problem okay yeah I think and other allied to that the code nineteen thing has there really haven't been multi disciplinary clinics running for about two months I mean it was really mostly we were really advising people only to come to clinic if you were if it was emergency type situation otherwise we did telemedicine visits the best we could ex that it's so that definitely put a significant delay on things as well. All right miss pocket. Question here concerning the the trial and. Thrown back out the adult population are they gonna be involved in the trial as well as it is going to be the twenty one and under at that do not know it that's designed by the FDA and octapharma so I don't know who do we contact in order to find that out do you know I don't know. Like to form I guess but I mean I think I think if if I I I would think that we. If there's an adult who needs IV IG and they go through our protocol we will work diligently with the insurance company to get out of the G. for that individual. Okay thank you. Maybe that's something that between our staff and you could work out to find out it how we would go about advocating to get the adults headed into that clinic my just I did not do so that I I I I think that's very complicated issue related to the FDA and what the the people that are paying the money which is our to form and they were they want to get a good clean studies so I don't know that there's much budget and at this point this has been in the works for a year and a half pro look at the that whatever their criteria will be it's generally very strict age limit now what that is what that is I don't know what it'll be you could be you know four to twenty one it could be for thirty five it just depends on whatever they define. All right anything else on the clinical trial anybody getting questions on that. Again we're back to the issue though you need to nurse in the position in order to be able to process the request company and in order to expand the pool from hopefully that a good number of the patients would be selected to be participant corrected we need and we need we need the nurse in order to treat the citizens of Arkansas that have suspected CPAP. Are Anything else you want to give us in the way of the well. Inter disciplinary panel the members from your side our. Members from our side or doctor beer Pandy and doctor rainy and myself. And we talked about asking Dr Martin from Blue Cross blue shield. And two folks you would From the panel right and actually I think the minutes reflect that nightly Branford Matt Brownlee and doctor Michael Martin medical director from Blue Cross BlueShield though six make up the inter disciplinary panel so it's doctor Smith dark rainy Dr panda and then the other three and of course you're at the discretion because it's really under your control you know as to who you expand to include in that so you could from your side pick up any and just for a matter of public notice of Leslie would you mind standing up. Leslie foot this can. Yep the employee buy you a message the point person for the and disciplinary team of thank your what we try to clear some confusion last time and co would really kind of messed everything up but Leslie is going to be the point person for that inter disciplinary panel of which you're gonna be responsible for getting the team together and helping facilitate and push it along with that that right. Everybody make sure. Okay so for those that may not heard she's going to get to meeting scheduled with their rights on the inter disciplinary panel so committee members you know that's moving forward and and I appreciate a point person being assigned to that to help facilitate that move that along so Leslie thank you very much all right direction if you have anything else that you want to report is from this point no Sir. Okay can you hang around for a few minutes ago to yeah I'll be happy to okay so at this time. Let's show I'd like to get the. The HM whoever's come to the table to answer a few questions and actually if you don't mind could you stay because yes Sir and doctor sharp on keeping your much hot because I want you to. Also help weigh in on some of this please. If you all would just kind of spread out gives close to six the as you can. Please. Hey ladies if you would please name and title for the record please. Good afternoon Janet man division director for medical services Arkansas DHS. Polished town deputy director Arkansas department of Human Services division of medical services. And it on a sad note that DHS is losing an excellent person and way of Polish she's moved on to a new career opportunity and just want to say that publicly because you've been a great asset to DHS thank you senator hammer so what wanted to get you all here for including the passes in the insurance company we're gonna kinda take it one at a time. So with regards to one address the issue as far as the pathway Ford for billing and appropriate reimbursement for a patient that's diagnosed and it is determined that they need the the IG treatment tell tell us from. Medicaid perspective about the about the requirements in about The pathway for for billing for that reimbursement if you would. Start with one section of it for the pharmacy and then to fire on several different pieces with behavioral health and position services we and we do create or we do for fill the prescription for the IB I or I never say it correctly for the and for the medicine it nine pull it Michael closer some of the folks on June phone I have a little trouble hearing if you don't mind so we do treat the diagnosis and. That is primary to the treatment it may not be a pay a pandas diagnoses that is usually secondary that we do the medication through the prescription into our pharmacy department we also do have a health services and the physician services with the outpatient clinics inpatient or the PC P. referral for the specialist and then the lab services that go with the medication. And what's the reimbursement rate for the IVI G.. It I think it changes almost every day I would have to at I would if I had would have needed to brings in the in a hall full with my pharmacy director I apologize I can't give you a direct. Okay. And a part of her we're trying to get through here and it's kind of a a big picture I'll be quick as I can but we we we got to trial we talked about you get to we got to cling to get set up we're trying to get the nurse in place of the process we got the interdisciplinary team and everybody else working with the pace foundation to help tried to bring about the protocol in order for and I and if I miss status as well want to have a open means make to statement for of Medicaid to reimburse to an appropriate level for IVI G. treatment if if ordered by a physician and and yet. There seems to be a far wall because of as I understand it the reimbursement rates are not that great if at all it's so that's what I want to hear from Medicaid as far as what's Medicaid say we got to do to get it to where that reimbursement rate can be up there for the kids can get the treatment they need. So I think at this time. The way Medicaid be uses is we're paying for. The components of it so we don't have a a program by which we. Treat all of those symptoms at once we of reimburse for treatment for all of the symptoms so we we've divided it out. At a cost the trees have the symptoms treatment that would be reimbursed provide about primary care physician. And then pharmacy services for which we reimburse and I think that you know we have a program by which we have care coordination that's offered to our beneficiaries and we have those pieces where we coordinate care for specific types of beneficiaries to have specific issues this is not one where we have a specific care coordination that is offered for them but we do have our persons center or patient centered medical home which has a case management care coordination component to it where those services can be coordinated for Medicaid and fisheries and then for those children and youth and even adults that are Medicaid beneficiaries and have behavioral health entomology I have received a behavioral health diagnoses a qualifying Behera hall diagnoses and that behavioral health diagnoses is combined with a functional deficit so that individuals are not able to function in home and community settings then those individuals will go into a pass and has has a large care coordination component to it as well so care coordination and coordination of all of those different components of the services could be could coordinated. For a past member as well as the past would be reimbursing for the same components that Medicaid reimburses so the primary care physician the pharmacy and the behavioral health. Mr so we don't have a bundled rate for it speak. This right now a group of all right hang on signally mistrust. And I want to share a little bit of a personal story with you because I have a child on Medicaid and I'm pretty sure this is probably what Natalie's gonna tell how to give a little and site on as well back in two thousand seventeen my child we lost our child like he just disappeared overnight and we didn't know what we were chasing and he just kept getting worse and worse and worse and worse and September of two thousand seventeen. Our child got so bad that he got put into at the age of eight was put into a psychiatric facility we had to put him in and he they told me was the most suicidal they've ever seen a child and no one could figure out why we went through day treatment with antibiotics he started getting better we saw improvement even to the point where even his therapist and everyone said okay he's getting better but he still wasn't back in February of two thousand eighteen there was a there was an order put in for I. V. I. G. because we we weren't getting him back with traditional methods when the order went through they said we will reimburse it and what went through was we will reimburse it up to a hundred and forty dollars for nine thousand dollar treatments no hospital was willing to take that so we continued on to fight more he ended up back in a facility within two weeks of that being the okay rate for Medicaid to provide and we and I've now heard this story from at least twelve different families that have done everything trying to get their child and we are now at the place where we we will see self pay but what about someone who can't who can't self pay that and I will tell you are child has been doing so much better but he's back into place again where he could end up back in a facility and Medicaid and I went all the way up the chain I had some connections through different groups and I went to like the top person at the time and they're like well we can't change that so my question is how do we change that how do we change that we could lose a kid because someone doesn't have twelve thousand dollars to put out to mark. So is it sounds like so. Because we have the the component pieces to pay for all of the the different pieces of this but it sounds like the the big piece that you believe is nothing I just wanna make sure we're understanding the concerns in and and I I can't even imagine what it must have been like for you to to be going through this so I'm so sorry to hear about your child and and the struggles that you've had and and very glad that you're here today to to provide this information to us and so it it sounds like that the the one piece that you feel like Medicaid is not reimbursing is the the intensive medication treatment portion of this yes that is the that's the part that is the missing piece that you believe that Medicaid doesn't reimburse and should reimburse. Now this. I have a question is this a good time for it Chantelle all Britain with a IG if you'll hang on missile written I ask you a recognized Natalie from the it and then I will let you go next okay all right Natalie thank you. I miss rice actually said the majority of what I was going to say is that the I. B. I G. treatment depending on the size of the patient so wait based medication it can be anywhere from nine to fifteen thousand dollars or more in an adult patient and to my knowledge Medicaid will only reimburse the hundred and forty for a two day treatment and the issue the other issue we have with Medicaid is there care coordinators and all will tell my patients that they need a letter of medical necessity to appeal it and the problem is we can't appeal it yeah. It's if it's approved and just not reimbursed there's no way to. So I mean the the best option is going to be to get better reimbursement in general but if that's not an option we at least an option to be able to have bills now I have twelve Medicaid kids right now that need IV IG that I can't provide its. This all Britain. And. Yes I'm just curious and Just trying to figure all of this that we've been talking about the treatments but I was wondering if Medicaid pays for the actual testing I have. Of this. And maybe maybe it's that the provider I don't know I I I've been hearing a whole lot I'm trying to learn here that I know that a part of the problem right here I'm not recognizing and not saying but I was wondering if Medicaid actually testing. It what is it okay I and Well let's go let's give Medicaid or shot at your first and you come in behind them go ahead. And I think that when when you have a a Eighty. A cluster of symptoms and there are multiple diagnostic tests to lead the medical professionals to conclusion of this diagnoses again it's those component parts of of testing that that would be reimbursed and and I think we're were and and I think that We probably wouldn't be here back from how you've been billing that I I'm assuming mis read for that you were going to his doctor Bradford I'm sorry We were you the one that was gonna at going to tell us that you attended the bill Medicaid and how that had resulted. Out I was going to say as far as the testing just the lap Tigers and things like that I have not had any trouble getting Medicaid to cover other insurance companies yes now there is a specific diagnostic test called the Cunningham panel for molecular lab and there's some debate out there on if it's needed or not that specific test is not covered by Medicaid but the normal lab Tigers to look for straps or Michael plasma just the basic lab candles. Medicaid is to my knowledge I've not had a Medicaid patient not get the last. Does that answer the question that I was asked yep Mr it's that. Okay it. Yes it helps me get this right three done I'm the only other part that I was going to share with you just again I said earlier I'm a numbers person His psychiatric stay I actually got the actual numbers to see what the difference would be from him getting IV IG two what was paid for by for him having to do less like say a gun on top of one of his medications to try to keep that actually helps and that was one thousand one hundred dollars a month that Medicaid was paying but on top of that his his side facility stays have amounted more than twenty six thousand dollars so that's a few I the IG treatments that based off the research could have saved our families and drama as well. And I think that's part of the the main part of the discussion is and I guess should be a good time go head Natalie. You you have talked to some of your family sure consenting to allow for us to do a little compiling of the expenses that they've been out. That correct yes okay so Natalie has talked and has gotten the release is necessary correct me if I'm wrong so I don't put you in awkward way here up. Has talked to several of her family's A and they are willing to help dissipate to simulate the cost that they've been out both from a personal perspective but also that insurance companies in Medicaid has paid so that we can use that as some benchmarks to come back because part of the part of the rationale behind what we're trying to do here is we're we're spending money over here. That's not provision quality life over here inference spend that much money insurance companies Medicare will depend spend that money over here that's not really producing quality of life. That should be incentive for everybody to get on the same page and understanding doctor shark doctor Smith where it weigh in on this that we've got to get we've got to get for the insurance companies what they need in the way of the pathway for so that when the physician orders that I V. I. G. date that's were that's were the requirements going to come in if you all order in mind and on the right page on the right blood trail. Yeah I think there's actually two sides to the story. one there was a previous double blind placebo controlled trial performed by Dr suite of any company who is really the. The person who had originally and discovered in and name this syndrome as pandas that double blind placebo controlled trial failed to show significant difference between placebo and IV IG so that's one of the issue okay. On the other hand one can one can certainly have a history and and I've used IVI G. for other autoimmune disorders where you clearly see a dramatic response in an individual child. And I and I think that's where the. but you know there's a a conflict of. Of information basically that one has to consider. I think there are there are two things that that this clinic will help with first of all. In the literature that we have in front of us today the primary indications for the use of the G. R. in moderate to severe cases. so that will help limit the use to those who really need it and it's not just about limiting that use there's a protocol therapy of antibiotics for anti inflammatories corticosteroids and then I V. I. G. is really a therapy that is should primarily be considered for the most minor for those moderate and severe cases are those cases that have been resistant to the other forms of therapy so I think that will establish. I therapeutic protocol over time the escalates or may even you know if you have a child who for instance. Required psychiatric hospitalization I would consider that's probably a severe case so that might be the first there for you that that child gets other then the courts the antibiotics that are obviously indicated so I think that will be helpful I think the completion of a of this new trial and are and hopefully our involvement in that will will help provide two things first if we can get patients in that trial it provides them with free medication so that very helpful. usually what happens with the double blind placebo contrived eight your is that each patient that enters a trial is randomized to receive either or. You follow them for a matter of a few weeks to see how they responded you do testing and nobody knows which one they got right that's a double blinded study. But ultimately almost all those trials will then roll over. To where the patient who got placebo would then get IV IG. so ultimately every child that entered the trial most likely would get treatment so that's that's an advantage of of getting the child in the trial and an understanding on the front end it's fifty fifty chance that the Chagatai B. I G.. Ultimately the results of that trial then would give us more scientific evidence that would support. The the payment by Medicaid and other insurance companies successor so this is a process. That we have to follow through. Just to clarify the costs standard cost of I. B. I G. is usually about a hundred dollars per gram and that does as mention is on a weight basis typically one point five to to build two grams per kilogram so if you got a. If you got a twenty kilogram child or so one of the ways forty four pounds. In that does is going to cost you about four thousand dollars but if you got an adult that weighs a hundred kilograms then that serve you know a much larger expense. so anyway that just clarification cat. Mr mistrusted you have anything else way in a I'm good thank you okay Natalie do you have anything else to weigh in on. Yes I had To add a comment and then a question for doctor shark I'm not comment is I understand that this trial is going to help in this clinic is going to help but I have a list of I'm estimating twenty people that currently need IV edgy now and some of them may not make it to go through clinical trial if we don't do make processes to work through with insurance now I understand you I understand you're cute situation there I'm not dispelling that I'm just saying this is where we need to get to down the road I don't make the decisions for Medicaid obviously but but correct I mean I think you're appropriate advocate for your patient especially if they have moderate to severe symptoms. And one question also doctor sharpen you said about a hundred dollars per gram that's what I've also heard but on y'all's in is that just for the medication or just I guess my housing does that include like the hospital he and the all the stuff that goes with that or is that just for the medication itself is just for the medication itself out did you could I think the cost our pharmacy is actually seventy dollars a gram the last time I heard so it's probably going to run it you know as it'll probably end up being some kind of ballpark cost of a hundred dollars a gram Thank you. Smith you're the point person for communicating with patients foundation I'm just curious out in Arizona. They they blazed a trail as far as what Medicaid does for them out there or. Yesterday they the report to me that they've have an understanding with the They're Medicaid authorities that is kids have gone through the protocol at the clinic that they have that the Medicaid will then pay the cost of the treatment the cost of the treatment for those patients and the development of our protocol for our clinic here in Arkansas is it going to deviate much from what is the same protocol okay. And so as far as advancing that protocol. So that Medicaid. Would have the criteria to pay by. There really should be much more we've got to do. Mr Ryan said that the that his Medicaid director had offered to call and have a discussion with Any of the Medicaid authorities related to the state's about about their approach and why they think that's a good approach so I think we can get that set up if if that would be helpful to you miss ma'am. Could we put we can test you to have that conversation I'm I'm I'm planning with the cochairs agreement that in about three weeks we'll have another meeting do you think that would a lot you the time to have that conversation could you all. And I think three weeks is doable but I do have into the year responsibilities could have an extra week just to make sure your okay. Thank you okay I to what should you have the conversation if you're just communicate with me directly or Carol here and let her know you've had that so we can have that as part of our agenda for the next meeting that would be helpful. A be okay. Okay any questions on that on anybody. Okay. All right thank you all for being here today and. I don't see RES pre hang around if you want to that's fine but after awhile need talk to you and I'll call you on the phone miss stone if you don't mind please about a number. Close to a question during okay all right make sure we get you on June still or did you make it on the. Your Dr Martin this. Some senator hammer yes Sir that probably. Could you get better did you get to ignore her I I think you all were tracking with I just want to pay I'll. Are you able to hear me I can write or we can right there. Okay I just I'll make it quick I just wanted to see if we're working towards a focus group those who have proven to know their experiences their wins their challenges sounds like doctor Smith is going to have that conversation with somebody for a relationship with the pace foundation and then the appropriate insurance or the appropriate behaviors in the state of Arkansas I was just going to request consideration I'm I'm not even saying that I should be a part of this but if we sit down and start from the beginning that again this is on an I. P. I. T. thing this is the diagnoses and a treatment and appropriate reimbursement for that appropriate treatment and diagnose these I I just want us. Would hope that we start back from the beginning able to see what falls out. Causing these denials that same we need a medical necessity yes. You don't find it medically necessary or this is a This is not been approved treatment for this diagnosis I hope that makes sense. It does and will will make that happen. all right do we have. Make sure Dr Martin on the on the call on June. Yes you read Senator hammer yes ma'am. You have you been able to go ahead magie. I was just first of all right I want to thank you for allowing us to purchase. Today. And okay next time we'll be able to be there in person Dr Martin no worries because we are more that most of the discussion is centering around the clinical aspect. And I know that Dr Martin had initial conversation with doctors that are to your last meeting in March so I has to be boring Yeah what we are what are involved that. Well this. Would would you have said again Max. The last part I didn't hear the question I heard that Leding but I didn't hear the question I'm sorry. I ask if you would allow Dr Martin to sort of give you an overview of what our two Asian and in this process up until this point sure would love to go ahead. Mike mark Martin record more arc Arkansas Blue Cross. And excited to hear about the clinical trial that doctor sharp and I appreciate your describing we had briefly had a conversation with doctors just earlier in the year and a look forward to their process and protocol which will take back to our policy committee and work with them our toward what needs to be done for mark employed to handle with arches a page. So let me ask you a direct question if you heard the conversation few minutes ago it would appear that out in Arizona that They have figured the pathway forward at least for Medicaid to be able to reimburse in their Medicaid director will talk with miss man here. And if the protocol in Arizona which is going to be duplicated here in Arkansas As as it gets put in place then what becomes the prohibit ours from your position from being able to start reimbursing for the for the treatment. Well first of all there's going to be an ongoing trial so is doctor sharp another's a wooded two there are still some doubt as to their two Arkansas trial one is it shows a benefit in one as it is not. And so we were all white the results of that magie definitive change in our policy but we would certainly be willing to work with doctor sharp and dark spent. Have to generate something on the order of a pilot policy specific to Arkansas children's in your a mass. Are to understand or there might be situations where we need section or have a list you like this. B. I. G. got sharper doctor Smith your one way in on that comment or thought I don't think there been are read I be I cheat. I'm sorry say that again Dr Martin. I do not think there been problems with our level of reimbursement of five PM she. Simply that for this indication not covered. Or or it's been denied. I'm sorry or it's been denied. The let it all right but. Whenever I V. I. G. is approved and there are many indications for ideology. Of when we. Those indications there's never been a complaint about our level of reverse. Okay of doctor Smith sized you were dark sharp if you all want way in what what was said. Or is your is your button push their doctor. Stars on. I would not just concurrent with doctor Martins remembrance of our discussions and it fits with mine so we they were both wrong or were both right so. The. What's the appeal process when a denial has been. Issued as far as using IVI G. as a treatment when a. Primary care physician has ordered it. Dr Martin or Max heart. What what is the appeal process when a jury would be your question please you broke up there a little bit share so. What is the appeal process when a primary care physician has ordered IVI G. as a treatment and you've issued a denial what is the appeal process. One more that's complicated by the the wind of this. So appeal process of this is diverse somewhat I want one and business most appeal processes have at least a level of appeal and then if it contracts subject to PPACA. There have one level of appeal to a ID which made them required they go for external or independent review. However what is a self insured group. The self insured group called the insurance that is that they're the payor in the situation and they ultimately decide whether or not all the overturned the appeal. Not only record. Go ahead Natalie. Dr Martin I and the the a and but in Arkansas and I have been trading is good for a couple of years and I am currently looking at and I have the I. G. denial on one of my patients from Arkansas Blue Cross blue shield in this particular case not only has he felt antibiotics steroids and anti inflammatories G. also has had major GI issues including rectal bleeding that he's had to be seen at children's in their G. I. department and can't find it clause so obviously with all of those complications more oral antibiotics for all their oral anti inflammatories are really contra indicated and so I presented all of that and I still have a denial on this nation and the reason states that there's no supporting a laboratory data supporting diagnosis. And so I'm kind of curious what you all are looking out for laboratory data that were it to be approved. Our one not sure what that will do that or what the real reason for it and all was but Sturch we don't cover it for. Pandas that would be the reason for. Not whether there was lab work but simply that we do not as yet recognize that there is a benefit I B. I G. Perkins. So I am actually had a diagnosed as the icy tempo G. ninety three point four nine and the eighty nine point eight nine which is other in a locked at the. So if the issue is not he does it would depend upon what exactly the diagnosis is because that you mentioned are nonspecific. So it would require requesting medical records in order to ascertain exactly what the diagnosis was and whether it Matt one of the indications we recognized for I've yet to. Let me what what we can take this off line and I'd be more than happy to us if we can get specific information offline help in the way that we can't. That would be wonderful okay we'll get you all to connected that might be a good one for us to spotlight doctor cloud like to issue question Dr Martin of Dr Martin two two questions one is there a specific International a disease code for pandas you talked about what she had submitted was nonspecific so is there a specific code and the and could you furnish a top any personal information but could BlueCross BlueShield furnish this committee with. Request that they've had for the the G. for pandas and did not it. There is. Pacific I see the ICD ten code in the as you do jun twenty twenty manual I don't have trying to be fortunately but that there is. I'm sorry I didn't catch the second part of your question. The number of request that have been denied for the G. due to pay and a central. Could we get that information. I'm sorry thank you how many of those are. How many request had been denied by Blue Cross blue shield. What I would not know that are not. Could we get that information. I can speak for the Blue Cross that Ben and I for my patients if that's an interest. The let me interject an essayist Dr Martin what doctor cloud is asking for is. And we're gonna **** of all the insurance companies not just you okay Eight a total number of denials. Related to. Help me formulate my goal right direction aqua total number yes total number of denials the Late to. The up band the pandas at the right okay to to the panda pandas is there a reason you can't provide that information without obviously violating if rules and all that stuff. I will see what I can do to find the information and to see what part of that information could be reduced close. Okay and what makes a request to the other insurance companies to. Okay and Natalie will get what will get your go ahead. I was just going to say I know doctor cloud asked for numbers just a general look at mine four federal Blue Cross have had one then I'll. In all of these are of January one for health advantage Blue Cross I've had four and four Arkansas Blue Cross I've had one. And that's not including before January. Okay would you in Dr Martin have talk about that one so that all right if they have any questions. Miss Russia. I was just going to when you're saying you're gonna request all those numbers from the different insurance groups of how many denials are are included in that with some of the insurances like Medicaid could it also be included of how many have under promised Such as a hundred forty dollars like so even though it wasn't a denial it was pretty much of the Nile just without a recourse. I think we will formulate an official list of what we wanna request and will add in that if paid how much paid how's that sound and some good and okay all right. Make sure Dr Martin you all you all have anything you want to weigh in you for discussion up to now anything you want to add into the conversation. No Sir will will try to compile the information and get it to Carol As soon as we we get with our folks and see what what we used to all and not only if you need any help getting dark Martin just Carol. Give you my information and I can send you have it his local rations you guys that. Thank. Thank you that would be great. Thank you all for joining us on zoom up I'm a try to wrap this up in ten minutes if you want to finish the ride all right if we could let's move on and I'd like to get all the I'd like to get the Representative from the a Representative from each one the passes to the table if you don't mind a maybe doctor Smith. If you don't mind moving side will make room for them in. Please. If you don't mind the. Name and title for the cut put the company for the records please. Jack up the Arkansas total care. I'm Jason Miller summit community care. And I'm Robert Slattery with empower healthcare solutions right and Jack you're also represent. Call choice yes Sir so our policies for the to the committee is are gonna be equitable for total care and culturally so when I'm despondent this same person all right I know shall first time for committee but you do have passes which means you probably have some clients within your passes that are affected by the subject matter for today and let me just ask you first of all you already comments or anything you want to share having her all the conversation today for and shall couple questions. Anybody so. I would ask you the same thing that we're going to ask for Blue Cross blue shield and that will extend that to others is there a reason you all would be able to provide information for You know for the. Maybe the number of denials when a PCP is requested or you know ordered treatment four pain pandas involve an I. B. I G. eight thing that Chelsea is a barrier to provide that information. For us we researches before came and we had a thirty PA request between our and they're marketplace plans I'm not specific on the wall choice small group large group I can definitely find that out fry the IG a we did and we did not deny any of those thirty for and we have received one request on Arkansas total care for ID IG what actually dependents or not do you know what your reimbursement rate is for I'll have to follow up with you after this. How it will let me go down the line the station. so. My initial research for games looking at its member we we don't have any cases to my knowledge that have has probably G. is related to related demand is if we can find that we can capture by diagnosis code we certainly will provide GT's hours we had to we to my knowledge we've had none we we do have cases with I have you know we do we do have our process the policies that Hey five yeah G. different things but related to this we don't have any any any that we've done so. Robert in power can provide that information I don't have it today for you okay if you will not get in it because let me go back to you Jack because you said you all the all had thirty you've research you got thirty claims yes Sir for and better so our our Arkansas works and then our FFM for those above a hundred thirty percent poppy little all right and you page something but you don't know how much pay I don't know it but there was no P. eight and I also I would expect that we paid the negotiated rate you know if any of those related directly to a diagnosis of panda pandas that none of them were tied to it. Okay. Do you all know if you've had any request research if you will and find out in the subject matters panda pandas as far as requested the knowledge from any of the physicians that have have ordered it because it it'll be curious to me that you're. You know if you find that you've had some and they haven't been to nine you of all paid even though you may not know what you page page something that that would tell me there's an established pattern and pathway Ford by which at least something to get paid under that diagnosis and I'd I'd like you all come back to next meeting and it tells how it is that you did that because if you can do it it would seem to me like the others would be able to do it too unless there's some unique differences and so I am kind of give you charge is just like the day number one keep staff here any longer than we have to but can you all do that and have that may be ready in the next meeting in a month. Absolutely right of the data that. Uploaded. All right what else have any questions. I want to make a request of the autumn of just be honest I'm I am motion you a little bit but I'm on a I got a question the all wireless it here. As I understand it part of the passes you have five percent that is to be Utilized for community service. Correct community investment yes but I can use of. Okay of the little homework and I think it's allowable under the way it's written you've heard the conversation date and I'm getting the landscape we got a clinical trial that we can access but part of the problem is we got this clinic set up over here and we need to get a nurse hired and that nurse needs to be sent to Arizona in order to get trained specifically in dealing with pain and pandas which is the critical component we've got a couple doctors that are you willing as well as a team of doctors and some others as you've heard testimony here today but it's really critical we need that that person is also critical of my pain that we need that nurse who's going to be long term and not just kind of piecemeal Dan because if they can get that expertise to dig into those files when the doctors come in on the limited time they can fast forward we get more kids in but if we can't get the kids in we don't get a seat at the table when it comes to the clinical trial and part of what Natalie has agreed to do that her patients have waived. You know the proper documentation be able to we're going to assemble what the cost has been this being paid out my insurance company subsequently eventually if not already you all will have paid off and I think should be return on investment is what is going to we're going to find out of both a quality life but to the families as well but also think to the carriers is gonna be a return on investment because if you're paying out to a psych unit when a IVI G. is the testimony was given by miss rice we're after quality of life here. I'm gonna ask you all. If you would look. At helping offset the cost and work together as a team of three and if any of the other carriers want to join into I think it would be a good cost to champion that you all could help put together as part of your community service to help put together the money for that we've got a letter we're going to ask the committee to approve the final draft of it sent to the governor for a hundred seventy five on a rainy day fund but you all know how that is in a political environment I'm just making a personal question dark cloud as well as members of the legislative branch representing here today that y'all would look at that and let me know ASAP if that's a consideration because that would really help expedite the process and I think it's going to save you all money in the long run as well as the others you all want to give me any feedback on that I know of put you on the spot here in the open but any feedback. We're happy to explore we have an internal could internal committee that reviews these types of investments through the past program so I'm happy to get back to them and get back to you quickly. Verification yes Sir we can look at a move we are to have a committee looking at coming investment ideas so we have a kind of a list that's kind of grew in which we we really have to do it in twenty twenty we have to get approval from DHS to do it is a committee investments of policy miss rules so we need to make sure all those teas and eyes are crossed and out it and then we need to know what we're talking about in terms of cost the one thing about committee investment dollars is they're not they're they're kind of now dollars are not necessarily your mark for future years so we're taught we had we had to figure all those pieces out and if it's going to cost acts and my provider investors providers and other folks wanted to do a pass if we're going to do it maybe we can we need to build that ends because that would and not move something that we were going to do another you know endeavor telling telling okay and do a bill we just need to know all that before we make decisions but makes Robert the comment I think it's a wonderful idea and we collaborate already today through an association amongst the three of us so I I think from empower perspective we'd be more than willing to participate that and what I would ask and I've already talked to very talked to Leslie some and as far as the mechanisms to receive it there is there is an appropriation that was actually passed this last time that we got through for this it is a it's basically pretty much a one time ask because as the saying rolls it should become self sufficient in a. I think we can work together to get that done and doctor cloud and I'll make a commitment to work with you all in may we can have that will work out before the a month from now but could you all be ready to come back by the end of next next meeting publicly have a minor it might even be good we cast through if we want to have an association meeting and just have you both there we can talk about it as a as a group as a group yeah. Okay I would be glad to be there Mr. All right John you all have anything you want to weigh in which Lleyton your rating one throwing out. Okay. Well there is there is one thing I would like to add you ask this prior to when we sat down if we had any observations and I think listening to the conversation today and recognizing that sometimes it's easier to kind of take a laser focus on a particular diagnosis versus trying to transform the entire system this does offer an opportunity based on what I heard today and also having experience personally with rare disease rare diagnosis sees with my own children I think this may land wealth to some of the discussions that we've been having around alternative payment models and being able to work with our clinicians in being able to identify ways in which we could develop into an alternative payment model that looks at the entire episode of treatment in being able to identify ways in which to bundle those services and those payments to where they could adequately address the need at an individual level but at the same time supporting the clinical side of it that may not be something that you would traditionally C. and fee for service environment which the state's Medicaid program operates under but I think even miss stones testimony. She recognizes that there there's the potential for this type of collaboration so I would think that as we move forward from empower perspective and I I would probably wager to say speaking from my colleagues would be interested in being able to identify what those components of care model would be and then also align reimbursement to where it would be adequate and it would be able to meet the needs of the individual being treated in a way that's equitable and does address some of the. Concerns that we have by the condition not being treated and then having and other expense as a result of it that doesn't get the optimal outcome. Whether that be from an individual perspective whether be it from a care giver perspective provider and or pair. Encouraging. That's sharp you really for like you one station did you no no no I by here he's he's on track okay. All right if they have any questions. Thank you all for being here I know. Been a chills of your time but I hope it's been well invested time thank you all for being here thank you. alright members there is a there are copies of reports in there that nightly Bradford actually provided tuition directed us toward I want to ask that you just read that get familiar with them will cover some of that when we come back at the next meeting and that's any questions on that. And then one other thing There's a copy of a draft letter. This should be in your packet. it has yes your say draft across that. Ross achievement we voted at the last meeting to send a request to the governor to consider giving up a hundred seventy five thousand three day fund to help secure the nurse of which is a mention well go the appropriation was passed in the fiscal session as a pathway for but we're also asking what we asked today of the passes and for the other providers that we're listening in on what we asked the passage to do this may be a mute point but trying to cover all the bases and try to find the money where we can find it and this is the final draft of the letter I wanted you to have it so you could read it if you look at it real quick if anybody has any objection to anything I'm a call for an official vote to send this letter on to the governor we're gonna work on trying to get some additional legislative support the one thing I would note and we didn't get this done before came in but we're going to do that we're going to add Senator Irvin Sinead to this is she's agreeable and will that doctor cloud's name to this of fees agreeable but as the two primary chairs that's why those names are listed but we are going to ask their names to be added to this letter so then there's a support letter from you a message on there as well anybody see anything on there you disagree with or have any questions about. Gonna get a motion second to authorize sending this letter on behalf of the hand pandas Advisory Council. That. Question our state. Okay go ahead. pull the Mike down if you don't mind and all right miscalculated okay. Scanning through this I'm still see in just the childhood we need to make sure that the adult population is included in. In this. Because I think it's it's it's confusing whenever it's the you know the pediatric on on the and I mean these kids do not grow out of this particular. Diagnosis. We'll make a comment a suggestion that we could add to the second paragraph. Of a separate sentence. That would say this is to include the adult population thank you. And I've attest represent cloud of the mind amending is motion to add that line if he's agreeable. So will have additional sentence added to the second paragraph that would say this is to include treatment of the adult population. Thank you you want a second that misspoke. I make a second to the motion. Okay. Carol do you have that written down or do I need to repeat that. This is to include the adult population motion second is to prove the letter is written in the draft form with adding to the second paragraph the line this is to include the adult population we're gonna head of Senator Irvin same issues group will not clouds name with each group which thank you he is made a motion I guess it would be a discussion. All favor say aye. Okay forget a post all right I'm forego the discussion about the subcommittees of because it's late we need get staff out here and will have some. The dark cloud not get together on that and with chip and by then maybe we'll be into phase three of this panda stuff we can have a lot more latitude we can't do much right now other than organized so anybody have any other matters to bring for the committee. Really appreciate ever stick around and thank you all for joining sons them and on phone anybody on Zoomer phone got anything. With that were turned.