* Arkansas PANS/PANDAS Advisory Council

We're going to call the meeting of the pan pandas Advisory Council to order just for the sake of service I can't see small boxes I want to ask all the members are joining us by as soon to announce yourself and then that way we can also get record of your attendance so if you all would just call your name out one by one on the zoom meeting please. This is John all Britain. Paul Ryan. Senate. Actually Collins. This is rex mass. And red bar. Matt Brimley. All right and then if I got it right members in the chamber would be a vice chair cochair represent worn vice chair Representative cloud doctor Joe cloud A no we got Kathy pocket in the room. And we got Natalie Bradford in the room and we got Deborah rice in the room in my mission anybody. Okay very good thank everybody for joining we're we respect the fact it's Friday afternoon and everybody's got a busy agenda and we've got a good agenda and we will try to respect all the physicians in PC piece that are on the line that need to take care patience or respect your time think we're gonna have a informant meeting a good meeting will get to here in just a second thank you all we do have some information toward the in the agenda about the continuation of this committee meeting and we'll get to that appropriate time on the agenda with that recognized co chair Representative Warren Frank comments. Great to see everybody we look forward to continuing this and. See more progress made so I appreciate everybody's involvement. Thank you Mr right and if I get a motion second to approve the minutes of the October twenty ninth meeting please. Motion Annecy a second by miss pocket down there a discussion or corrections that you see on the minutes. favor say aye. Post thank you all right let's start off with the doctor Smith to give us an update that you'd like to share with the starter Smith. We have a senator we have several updates what is the clinic continues to operate we think that More of the Kinks are worked out and that there's a steady flow of patients through there right now is Two weeks Sabin two afternoons a month. we have due to a generous gift from From a donor and so matching money we have secured four. A year a salary for the nurse it once that is that person's hired that will. Allow us to go to one clinic a week which we think will draw more referrals and we're. Happy about that too see people are I think we've gotten on number of pieces of Information out to the task force. A updated. Wire that is should be in your possession and was I think sent to you earlier in the month in today's packet exhibit the. As the fire for the adults because the fractious automated stuff a lot but the weather which we will operate here you AM mass there are some patients who missed getting seen as children and we want to take care of those folks and work with them as adults and help them get the right services that they need there is a phone number of facts and a new email address at the bottom of that flyers. We've had does several discussions with the Mister rye and and was Senator hammer and I think those have been fruitful to let a groundwork for future progress in future gross so I'll stop there and see of their questions. Any questions from committee members at this time. So this is all right Rick can you can you send me one of that flyer for the adult clinic at I think it's already been sent okay all but if not we'll we'll resend that Marty is Our way to Texas right now so. I'm I'm hampered. I understand sex second thing is that I think the group needs to understand from the US the employed all these clinics you're the only ones that have started an adult focus on that clinic and I applaud you for doing that that sub a fairly big component we always think about the kids but there being generation after generation that's didn't have that treatment at a they have problems later on the last and probably never understood why so I I applaud you for doing that and I've started to make that had no throughout the rest of the universities that we that we have in our partnership. Luxurious let me ask you the flyer that you're referring to that's exhibit D. right. Exhibit D. isn't dog yes Sir and and that is for the. What we'll get to this. We'll get to discussion map but it is just a flyer that you go out to the general public versus supplier to go out to the providers because we had a discussion about two different flyers. All all all of the above okay. All right a deadly. With the adult clinic are they going if needed and if covered will they be able to offer IV IG being in the psychiatric department. If if somebody needs that will collaborate with our virology department and are at you and mass and the fusion center to get them B. I G. yes ma'am. That it a look yes thank you okay and actually. miss college Sorry I they have any questions okay I'm sorry who's who's in C. fifty one that hit the button. The to the club yes that's me okay our class. Doctor Smith would you clarify Symptoms originating during childhood in other words if someone after what age develops this post infectious auto immune disease the way I read this then they are not qualified to come into the clinic so would you mind providing some clarity for the. Yes yes Sir I will I will I would say that it if if The family and or the primary care physician thinks that the an adult. it has. symptoms are we oughta see them and that we're not trying to screen people out we're trying to get people and they may or may not have. And pandas but they're probably got something and we need to helpful so I wouldn't I wouldn't screen at that level I think doctor clothier was trying to And. Your make sure that. Make sure that the all the acres the expectations of referrals so he was somewhat limited in that but but this was this client access in a larger context of P. R. I. and the Walker family clinic so will will help take care of a. Follow up sure yes be yes Sir I appreciate clout agreement for you go on let me let me interrupt I'm sorry I also want to recognize because you're gonna see their names popping up I didn't realize they were on the call. That doctor great sharp is on and also a doctor Rick bar has joined us so just FYI for the committee members dark cloud. Thank you Mr chair yes Sir I appreciate that but but only the ones of us either owns a member in this room have heard that explanation and if you if you read this fire that's going out to everyone. It it pretty well mandates that those symptoms have to originate during childhood which is not defined I don't know what that is at eighteen and below or whatever but I would just respectfully requests that we address that so that formally we're not excluding any quote adults unquote thank you. All right Sir will we will we will we will work with that and certainly we have a a clinician on the other end of this phone line so that is you know as as you have clinicians call will work to get the men but will look at. Revising this. Thank you. Okay. A dark cloud if I may and I'm gonna ask Dr. A sharp Natalie and also and we're gonna get to formally reductions to Mr varmint or doctor barn a minute but doing the clinicians have any comments on what doctor cloud just requested or any input for the benefit of us Lehman. I guess it depends on this Greg sharp I guess it depends on I think what he was saying is that there are adult patients most of them probably did have a childhood onset so I think from that perspective they would still be covered I guess it's a it's a totally different question regarding that build on set and and I would be for an answer to that to doctor Smith. Well we we know we know that adults have a similar illness whether there's consensus medical opinion that that that this is pans and pandas I think that some clear but we know that there are Adults who have acute onset of in subplot but the and whether it's the same ideology or not it is for our purposes it's immaterial to us we're just trying to make sure that we can help take care of those people of those patients with a knowledgeable physician and I I'd I'd stake my life for my family's life one doctor close your being a knowledgeable physician about these patients. The club anything else thank you okay a miss rice. I just had one more follow up question without Are with you and master the thinking about doing the same. As they're doing with the children's clinic with doing the blood work from the primary care for like is this going back to the primary care needs to do so and pulmonary blood work and things like that lake was adjusted with the children's clinic. Is much as much as we can do that we would we would find that to be for for of all rather than having somebody come in here and then getting blood work done and then having to come back especially given because of it so if we can do some of this work in advance with the advent of the of the nurse the nurse will work both the pediatric and the adult side I think it'll be more efficient. Obviously if somebody can get it done we can get it done here. Okay so this becomes a really big thing with education of not even just pediatricians but all primary care doctors. We will we will have we will have a nurse who will be the receiver of this phone call or this email who can help educate the doctor or the doctor's office. Okay. Good okay miss pocket. Yes. My question is following the protocol as far as wanting to get the PCP is involved in trying to get all the stuff done before we actually go further to these clinics is there anything that we have listed that we can actually stand that maybe these clinics can coordinate with the PC peas in order for them to get all these testing done before they're seen in the clinics. Yes ma'am we have material that we send out now to the primary care clinics on the on the pediatric side it will just continue to develop that on the adult side was read I Mister Ryan and I have an appointment next week to transfer web based material from the university of Arizona to the university of Arkansas to put up on our website so people can get to the information and then after that will be putting that information up on the Arkansas department of health website. Thank you. That it. Right of let me let me just pause right now on the flyer. A. Does anybody have any questions or any input about the flyer. Other than what doctor clouded noted and dark cloud would I'd like to ask if doctor Smith and doctor cloud. Could have a conversation to make sure the what was expressed as articulated right on this because if we don't if we don't come up with any other changes or suggestions would like to see happen is once doctor cloud and doctor Smith reach an agreement for how that needs to be articulated that we would be authorized to go ahead and release the flyer so we can go ahead and and and get it out whatever bills having weight input on a daily. I just had one question and it I hit the wrong button originally so I may be a little behind in my question but it goes back to doctor Smith mentioned that that they have already been sending out information to the pediatric clinics and I would be curious what the that information is and which clinics because I'm in a family practice clinic and we have an rest with these kids and we haven't received anything so are we just going to the ones associated with UAMS and children's right now or do we have or getting it out to other clinics to. Was read for us I think that there was communication with you when you were referring people and tell us about what was needed for the referral and that's what I was referring to. Yes Sir I I have I have been in contact with the doctors there multiple times and they've been or is very responsive I just I thought I misunderstood than I thought you said you had got stuff out to other pediatric clinics no ma'am we don't we don't have any we don't have any funding for that and we would like to work we're going to use whatever available mechanisms we have such as our website and the health department's website but we're not doing direct may lane about these issues at this point and will have to. Work to find other Low cost or free avenues to distribute the information. Okay all right so let me let me ask it this time. Is there any other information any questions about the flyer. Other than what doctor cloud his made a good observation about. Okay not sinister I. Good men are a good lady ET by mute button First several meetings I was asking for a hard copy the electronic copy of a hard copy it was handed out in the may meeting. I'm in the sense I've never seen it I don't know this may be it is is this what I've been asking for for the last several months were is this a new flyer. Matt I think this is this is the new flyer for a doll but you are asking for one for the pediatric wanted that was distributed I believe immediately after the last meeting. I'm not biased but I'd we do we can convey that to senator hammer's office and I was going to go out from his office or from the legislative office okay okay if there's anybody on the task force that has my email address just later thank you if they received it and forward it to me that would be great I would appreciate that page doctor Smith let me ask you though that that previous flyer that was reviewed is it going to be replaced by this one so that we're going to have a one fire does it all. Or did they both need to be out there separate classics because you're such different populations for pediatric gonna dolls we have more services for pediatrics and the dolls I mean we're we're we're thinking that there may be. Are we maybe way wrong but there may be a half a dozen adults in the course of a year which we expect a lot more than that in terms of children. So this is a different flyer even though it's red and white and. Has some of the same material audit the the key word at the top is a doll verses childhood. Okay. Matt. If you don't mind a going out not that I think it's going out to the world but. You have managed a millimeters all right we'll get it we'll get that re sent to all the members and when we walk away from this meeting day what we're green to is that the previous flyer which deals with the Pediatric version and then this adult flyer those will be the two official flyers that'll that'll be going out through the various websites that and there's no reason this can't be pushed out anywhere by anyone is that correct doctor Smith that's that's that's correct. K. must cloud and I will talk off line about his concerned about childhood all this adult one okay. Should we wait to distribute that until we have a definitive answer from you all that you're in a comfortable spot the language is correct so not to re send something I'm sorry I just don't want to send one thing and then a month later say whatever I sent disregard that knowing that that may happen I just hear that there's a question being brought up that seems to be a significant question. Get some guidance for staff on this one to make sure that when I'm about to say I'm sorry go ahead document I yield to you on this one I yield to the chair okay. Well I'm not a more direct device share in this one of the staff because on make sure when about to say can be done without it you know have any con unattended consequences. To this to the staff I would ask into the culture desk with there be any reason that if we. Have doctor cloud work with doctor Smith to address the issue is concerned and Maurice said that he would help facilitate that conversation you get it done I don't think we're gonna have another meeting between now and the year because of availability of room is is limited that we could by email get eight majority approval to authorize sending the flyers out Subject to that modification being made is there a reason we can't do it that way an official capacity. Okay showing that all right miss Collins input. This call. I'm sorry doctor well if you want okay thank you Mr chair with FOR the leeway. Doctor Smith its says currently adults with acute onset psychiatric symptoms originate region aiding during childhood of with my can solve this now if you would be agreeable to change the language adults with acute onset neuro psychiatric symptoms originating regardless what or just with the neuro psychiatric symptoms regardless of age of onset just a substitute regardless of age of onset would include all adults. Doctor Klein I'm happy to do that and we we will obviously will take care of those patients here P. are on that ends up Not following the diagnostic criteria for pans and pandas and so this was intended for those people that had the on sat during. the appropriate or the diagnostic criteria age but I'm. I'm I'm happy I'm happy to do that we just realized we just need to realize that that is a broader yes that is a broader definition. Yes Sir. So that's fine I'll be happy to modify that and we can with Maurice's help will send another one to Two five to the legislative staff and then you you can distribute it. Right I appreciate that I understand we're dealing with the real small subset probably but this way we're not excluding. Other patients. Thank you Mr chair alright you're recognized the cochair warned and then going to go to miss pocket and Bradford. Represent one. Doctor Smith a hear what you're saying and I I guess with you and doctor cloud I would ask. Could we leave the exhibit the like it is because what I'm thinking I'm hearing from you doctor Smith this that you're going to try to take care of any patient that's coming in there that you feel like really fits with your program. But. Yes yes Sir I think we were just trying to decrease the expectation of the family or the primary care physician with this I mean we we we see where one of the largest clinics that you a a mass of the Walker family clinic and see a tremendous number of patients so we just didn't want to get people's. Hopes up that. That and we wish we we already have two large clinics that this will be embedded in so it'll it'll fit in well. I guess I'm just saying you if you have someone come to you that maybe is past the age a little bit you're still going to try to get them and from what I'm here so we we do we that we do that already and we'll be happy to do it states. Okay. So I guess my question. Are you willing to live with that dark cloud or you want to change. Okay all right all it shall work that out right I will go to the miss Parker. Okay I just want to give a little back history on a personal case with my son my son did not get clinically diagnosed until he was over the age of eighteen as a child he only presented with anxiety and depression so to clarify what doctor cloud is saying I do agree that taking you know symptoms out is starting at the pediatric aids. Would solve the problem for the adult cases because it just Karen's acute onset happened after the age of eighteen. And. Taking out the you know the the pediatric side for these adults would save a lot of headache in my opinion for these adult cases getting the help they that they actually need I mean just like cancer there's no age limit on cancer if the kids going to get cancer it doesn't matter how old they are I mean that's just what happens so I just wanted to state that I agree with doctor with what doctor cloud says about taking out the childhood in this actual document and that's just what I wanted to say. Natalie. And so I was going to just comment there are a couple of new articles out in the Medical round that do confirm adult onset I can't quote them right now but I have read them and to agree that it can happen in adults and also as far as the definition of pans pandas yes I know the P. stands for pediatric but. I'm curious of the actual definition. Has to be a pediatric on set because I'm reading in the journal of child and adolescent psycho pharmacology the J. cap article and it says pediatric acute onset neuro psychiatric syndrome is a clinical condition defined by the unusually abrupt onset of obsessive compulsive symptoms and or severe eating restrictions and at least two and comment it can cognitive behavioral or neurological symptoms doesn't specifically listed age so. I I it always has been as pediatric on set but I don't know if the definition actually requires. That's something I'm curious about now to go research. Any comment from. Senator hammer I'm not the authority a dark rainy and doctor Vera Pandyan are much more the authority than I am and I I've asked doctor rainy to start joining me on these calls are on these meetings for after the first of the year. But I think it's a scientifically debatable issue we we do see adults with. Order me in itself up with the right now and. we see are lessons with that right now whether that has the same ideology. That hands and pandas does is it is a different issue we are happy to take care of those patients regardless of what the the ology is. I think some of the patients so you all have discussed we have taken care of them and we've seen them before this clinic was established I'll be happy to see them after this call. Okay. And then. All right so. Mr. Miss rice. It is a really quick question with the with kids that you're you're seeing in the pediatric clinic as their aging out is there a kind of a streamlined that they can kind of flow into the you and mass clinic. Yes ma'am okay I got your name is going to be joining doctor clothier and the adult clinic okay they can have the same doctor. And thank you okay. So in other words become a seamless thrill flow for anybody comes in as a transition. Yes Sir okay. So here's where I understand we are and that is We have the flyer for the pediatric we have the adult fire that seems to be in common agreement with the issue with the exception of the debate or the discussion that hooker between dark cloud doctor Smith and without objections would like to do is we would just move that once doctor cloud doctor Smith a consult and they get common agreement that the flyers would be sent out to the committee and the committee would respond by email their approval of the flyers so that we go ahead and begin the disbursement of the flyers I'll just open up the con mikes for any comment if anybody has any disagreement with that. Just for the official record can your motion second that that's way will proceed on the flowers please. I will give Natalie the first give thank you the second okay any discussion. A discussion from anybody on the zoom. All favor say aye. A post. Okay doctor Smith any other update you want to give on the on the clinic. No Sir okay do you know currently right now how many how many patients have been through the clinic and how may currently are being seen. I believe they're seen about to a session and so that's about four months and I'm guessing we've had a total of about twenty baby twenty four since we opened okay. And understand want to go back to the point you made earlier in your comments that there was a anonymous donation that was made or in the process of being made it it was somewhat contingent upon some matching funds from our side in order to determine the long changed long term sustainability of two to three years while the trial is conducted for the nurse but the. Unidentified donation that was made Do you have any anticipation as to when the nurse would be able to be hired and and put into a full time status Sir to clinic at children's. it it are just to clarify since started bar and not sharper on the call is to be a U. M. S. employee and we'll get them on board my guess is and at least by February as my hope there is a nursing shortage right now since some nurses right now may want a job like this and not be and in a cute covered situation so we're will start actively recruiting next week. That's encouraging news enter the unspecified donor They probably know who they are that's that's a huge thank you on behalf of the committee for for that generous offer eight eight thing else for move on to Mr run. No Sir okay alright we're down the item the on the On the agenda and Mister Paul Ryan could you just give us an update of the things you've shared with us before where we are currently please. Which well we start with the nurse consent that is a big deal in the eye and I. Thank you on behalf of the anonymous donors so I essentially that. came together because we merged us in Arizona. The daughter commissioners on and it's merged in to the Arkansas there was a a donor on the Arkansas side equal amount so I think of the first payment that is far as a technical question A goes out next week but I and in total on the second one will be right around the end of the year so what will happen rather rapidly The other part of the clinic I think that the group should understand is it will move from a once a month or twice a month clinic to a regular schedule once a week clinic that's a big difference to what you're seeing now and. And the donations were. To enable that change sorry from coffee but. Weather is changing in Arizona and so I'm changing with the But it but in the sense of that once we clinic what happens typically and other clinics should have done that is your volume goes up pretty significantly the other part that that makes that happen this is nurse who is there becomes kind of the face of the franchise if you will actually not doctors doctors you're great they do a wonderful job but the the families get used to the nurse who really acts as a full time nurse but also as a navigator two other appointments that they have to keep so that's a that's probably the most significant thing senators far as as other activities I and if you had something in mind that we know but I think that there's a national conference that we have at the end of next week that all the doctors there have been invited to was just basically a doctor's on the comp. Where the university get together and build a Davis the requesting the doctors with the is that doctors primarily be the focus because they like to argue and that and in this meeting how to treat kids know what the best to that's a negative side most responses if they share forms they share major breakthroughs like we have a a we've developed a plan at the university of Arizona that they're currently they already have given to Arkansas as a way to track tracking the results of ideologies for one to two to three that kind of thing to as another way of telling insurance companies that this things working sure is companies should read out of been driven bore more like to ask you can approved within their own realm of payments are based on conformance so we developed this tool to start to give them a little Leslie wriggle room when there's denying insurance that we said no we can actually prove it to yourself that's worked well here we sharing with Arkansas on the same thing happens Only thing I think we talked about last time that you and I talked about a little later with their Rick was The Medicaid portion of the program and and our continuing efforts to make sure that we don't give up on that in Arkansas I I there's always obviously will easier than you guys have been but I I tell yep matching match did not do said yes yeah we're in the boat with him that trust me you know I think our orders we need bigger or as so we're trying to we're trying to a large the largest Killam are ours but basically we've got it clause. In the. Hopefully to the federal open in the Medicaid manuals that defined experimental treatments in general not just this one right and artist audition actually found a couple years ago. And we use that is our logical argument to the Arizona people to say this is not experimental and we've given Maurice a copy record copy Senate resting up piece of wording but it basically says if you have an application that is standard of care in the United States in other words used by a whole bunch of people throughout the country which is is including Stanford and Harvard a lot of major medical institutions That that it that overrides experimental it says that practice in fact is not experimental is more standard of care so we I think Marie's tech the obligation to go find it that exist in Arkansas Medicaid rules or or possibly the federal Medicaid rules and I pictures to be finds anything but I honestly would. Encourage you guys to keep that effort up whether we find it is a legal remedy to that wording or to to kind of push that idea of the trial it's it logically it's difficult for me to recommend that medical folks would not accept a trial very narrow trial with your your folks at the clinic at first and then runs out to all physicians really and and if you need help with that. Arguing further where I doctors can get on the line if if it's a possibility I don't want to waste your time if if we're getting out of a hard rock but I think it's worth pursuing on both those avenues the wording side and the medical side and then the third. Entity in that truck of efforts will be the I. B. I G. trial which you know hopefully will take work I would get dedication is probably your worst case probably two years actually get it published so I think if we just kind of keep up the street tabs and don't back off a little I think that you guys will succeed in getting that idea G. and I'm just going to offer you that we can that would help you in anyway we can't. let me ask you better a couple things actually the Natalie go ahead. I'm not sure this question is to go to but Mister Ryan said he sent the Medicaid experimental definition all that information to doctor Smith and Mari's there anyway the council can get a copy of that. I believe we can of when I had a discussion. When when we had this offline discussion the other day we were trying to find it in our Medicaid manuals FAQ and. We're trying to find it in our Medicaid manual to see yes I was and. I thank you all might need twenty all the W. done soon there thanks and tail if if we could. We're looking for okay that came up this week in a discussion and I know they were looking for a I think mark is perked up back there so we'll up will work together to get that because I don't think we've got in our position and looking to clarify that it Sir will get it out to all the committee thank you is that a fair up Morayshire doctor Smith Sir Mr run. I absolutely that okay. Each. Let me ask you about a a couple things on the and and I'll come back to that portion of the conversation in just a minute but let me ask you about a couple things in our last committee meeting the phrase center of excellence was thrown out there can you expound on because I I think if I remember right we were designated as a center of excellence for pain and pandas research can you expand on what that means who has the authority to give it and what if any clout that actually carries. Sure I think it's a. In our state it error in Arizona I live stage this border regions because it's a college designation you guys are university that it came from that board of regents designated that term to us Senate axis is is not bestowed by entities like the national student health it's not something that they have a the power to do is use the state oriented in our case because we typically work all universities it's it's university river drive so designations inside the university so doctor Smith may be the better expert but in essence the definition was established when we first establish wanted Arizona. And it has three elements one is that your actively teaching about this disease or this disorder and typically it's from the doctor rainy season opinion when they have a class or they they enter classes a guest Speaker or they're out educating the general nurse population of the general doctor populist education as kind of all right definition and that's one of the elements of being is centers your actively educating even things like your flyers and stuff for very productive and that kind of a realm the second one is you research so the fact that your Speeding action on a number of research projects with the universities including one that rainy doctor ready and prepared to do one for imaging the brain of these of this this disorder and a lot other ones or we're going to have the work about is national conference you're a major element that fulfills that easily. And then the treating the kids diagnose and treat kids with the obvious one not you're obviously doing that now and I think our our kind it loose definition was that you're doing this is a full time clinic so that that element of going to the once we clinic senator was pretty critical with us I mean that's what we help kind of Don't put that package together because we're very we we think Arkansas's got the not only that talent but the obvious see the interest by this committee and the interest of the legislature as a unique combination that you guys to created there so I as you know during our our session earlier this week late last week in a row was added chat about that in my book you're easily qualified by now is Senator backseat you should change your name the different street a clinic in a center is typically the other two elements right researching and education most people that have a clinic don't have either the capacity because you're not a university to teach at and they also get involved in have a national type Research projects that are that run into the tens of millions of dollars so it it's not just simply three elements is actually three three elements that would be robust. Anyway I would recommend based on that explanation I recommend highly that you get you become the second center in the United States you that okay all represent a recognized a vice chair Representative warm thank you have a question on that line. This will be for you Mister Ryan and doctor Smith both of you. In the last General Assembly that we had. The you a mess received the center of excellence adoption if you help me here for their cancer treatment center. And that was a really big deal. We had a doctor Patterson and a lot of people I know that we also appropriated some money for that but when they were designated as a center of excellence that was a big deal we had a significant recognition at the beginning of our session that day to just celebrate that information I don't want to pass up the opportunity with our legislative session beginning in January if we've got something like that of course I know everything's going to be different I don't know how we're going to bring people in and recognize them but. Some hell. If we've got the center of excellence that would also be a way of spreading the news. And I don't want to miss that opportunity so. Doctor Smith if you can help me out here because. I know that we we did something special for the Cancer Institute so. If it's appropriate I certainly want to do it. Representative or not I will work with time Mr Riggs B. and with senator Patterson and you and Senator hammer to see what we can do during the session. Sounds great the more information we get out more people that know the better. No. And should represent war I one other comment you just brought to memory with that mystery by cancer that we used in that same year we were we founded the center of excellence here we also use that in the in the bill that they wrote that funded our clinics with two hundred fifty thousand dollars which help pay. someone for the staff but mostly for the research efforts they were in so they honored that person a in the nation concept the same way they cancer A you guys to the cancer pro so I would as part of our discussion earlier in the week where the legislatures go look it up funding years two and three yes it guarantee this clinic is robust and exist for a. Predictable minimal amount of time I would look at doing the same thing in that bill it's a bill that you choose to run to get that extra funding. At the please our goal. Okay. Mysteron would you talk on that doctor Smith mention while ago the transfer of material from Arizona two U. M. S. for for the website for the clinic that material specifically is what and who is that available just to in order to view. Sure it's actually it to form centered first one will be to the U. AMS website were their CPA clinic and held ritually mere what Arizona as well we've got all the technology people and at the docks meeting next week to make sure that they get all the data out there it is a composite of filed papers that have been written UC just links those papers some by a big consortium that kind of lay down the original rules starting and fourteen or fifteen. And we have a bunch of videos out there that are short versions of explaining that disease and also the. Segment on diagnosis and treatment and then a separate segment on the I. B. I G. so the people understand what the components are of that that help this disease so it's kind of intended I as a hybrid almost between populated folks. Thank you dollar gets all open everybody but not parents like to get into those and I think it's we did a good job at the university of Arizona we need to take those videos. And use them but there they can be they'll be addressed is you of it but I would encourage you guys obviously to make your own you can copy the content so any content that we have a we have it there for research we have a different clinical treatment we have it there for parents it has the four intake forms that we use so that is very visible as to in a number of fields about the information available to to either sign up to get to the clinic here's the number here's how you do it to here's a diseases and here's what they look like in a short since so what I'm really happy we took a long time and it was expensive to do but we also have a public station at the university dire where we filmed everything so I think that's a component you guys may want to augment the idea of this is just to get content robust content up there quickly right and re label it is Arkansas content which university bears on this blasted no problem at all doing that so it'll look like you guys in that and but I would evolve that so appreciate you if you have a grand rounds presentation we have links to grand rounds which are you know you typically in our done in a university setting by a scientist which is sort of technical but that is that kind of breast that you of information you have available to you the second place that we focus on it we will right after this one is the department of health so in Arizona. Four I think for years now we've had the department of health has a separate web page just on this disease which gave us a pretty good imprimatur on the public right now all the sun because it was up there became ballot is a disease of the argument went away of any kind of controversy and the second part is the the director of health here is an advocate she was a Speaker at our we opened our clinic up with chat about two thousand people at the open it was kind of a bust but she blogs about once every three months is as you know just remind you guys here's the latest development at the center Senate she's been very good about keeping it from the public eye because everybody reads the director's log every week so is there the number one medical officer of the state so what I'm going is designed to go to two places will get their university one done and probably within a month and then I would think that the department of health may take a little longer because we're doing with a little bit of bureaucracy but I I think it you know it is not hard to copy the content to be kept it kinda generic to the disease as opposed to Arizona focused. Okay a questions on that. All right I mark. You providing come in here checking VS come the table but would you mind coming to the table and for the benefit of those that are on the same call the rest of everybody else may not know who mark is would you mind introducing yourself for the record please. Certainly more quiet chief of staff and chief legislative affairs for DHS okay and I'm not going to put you in awkward way because projects that come to table it but when you walked in the room of thought okay we'll to ensure this. So you may have heard some of the discussion that was about the Medicaid definition and not put words she's not here we owe to respond exactly everything said but mismanaged here at the last meeting and also doctor golden in there was a question about experimental and in this past week based on what Arizona Medicaid has been able to do they have found a pathway for based on their definition of of experimental in Medicaid guidelines would like to do is send to you of what we have found and I think miss ma'am participating in the conversation but get the discussion going that if there's evidence to show that this is not experimental that we've exceeded that bar of expectation and it's beyond experimental based on what Mister Ryan said awhile ago that we could do a a sample trial here in the state in order to determine our own measurables and I'm just asking you To take that information and and and will have ongoing discussions not looking for an obligation but we are in the room so well in a I'll say this certainly we're willing to look at that and look at our definition experimental sewer that fits in I will say that typically we start on public sample randomized trials point that that is not something that Medicaid can pay for because unless we have a a waiver to do with it when we make service available it has to be available for anyone who qualifies for the medically qualifies Ford Sir we don't without the capability of doing a trial also repeat twenty people and see how it works on them that's generally not an option we have in Medicaid but certain where it will have to look at what they've got and see where how we can square that with the definition experimental is running any comment on that. Don't think I heard all that the rationale of the trial part if it if you could speak the yeah that'd be great. Sure off what I was saying is so that for Medicaid will make its service available typically we have to make the service available to anyone who meets the qualifications for the words we would not be able to do say if wanted a random trial of thirty people to see does that work for these people that's not something that Medicaid can really do it's basically an all or nothing proposition that makes sense okay so you can't do like it's not a separate study this the the efficacy and safety not without some for waiver CMS. We're we're is a waiver come from I'll be from this federal centers for Medicaid Medicare services on. Rick you have a. Any past experience with that. Kind of a program I think we're talking apples and oranges in one case we're talking about a randomized clinical trial in the other situation we're talking about. Let's study more. To see if we can get a pilot study going that would not be a randomized trial and that's within the confines of the definitions of not experimental according to the federal regulations. Right and I think in all same for for Medicaid is that you know when we may want to call it a palette we don't have a means of limiting who can access that shore of some for waiver from CMS. Mr run you know if in Arizona did Joe get a waiver do you know anything anything specific on those details. We did not the if you look at those because we didn't run a study because we use the the existing Medicaid standards to authorize this study and I think there were actually two lines in that that Medicaid standard that defined the the application specifically invited B. I G. that we used was not experimental according to that definition and that's why the Medicaid directors here approved it. All right so I went Desha first the first line against senator is to look for that is that makes it simple but there were actually two exceptions to that I have in front of you right there a one eight three with the numbers on there that defined. That this was not experimental because it was typically a standard of care in the. the other thing I was suggesting is kind of having a three way approach just in case she like the wording doesn't affect you that I would propose that you guys do like rent because it up a study in and whatever waivers it takes I'm sure that Medicaid's done studies in the past this is probably not unique the second and the third one would be the idea G. trial the global trial that we're all participating in so those would be my three approaches the easy one would be of the marines combined the wording in the federal but I'd ask your Medicaid doctors well to. Dig into his own those are is regulations you probably has more from there is anybody to go find that what they do with a. Any experimental treatment is it just. One line it says somebody said it experimental so therefore an experimental or are the exceptions to that. Go ahead yes I was the lease for our rules that are not exceptions it's either experimental or not if it is experimental it's not something they can be covered by Medicaid under our current rules. As I say we're certainly happy to look at what they've got and see if it's the trade still does make that experimental definition so what we have to do is convince Arkansas Medicaid that it's not experimental that have that that Rochester okay I'd like a. Okay like to take liberty as chair without objection what I'd like to ask is on ash doctor Joe cloud rep Dr Representative doctor Joe cloud again the title right there Representative doctor Joe cloud I'm also going to ask Natalie Bradford if you all to would team up together to work with Medicaid and have communications through more research to see if that is a pathway Ford in order to be able to do a clinical trial or try to take on the challenge of the term experimental working with their sona and what they've been able to do out there and I'll open it up for discussion on that recommendation miss rice. I was just gonna ask the question I'm over here. a big part of the discussion last time with Medicaid what is a cap coming up and it really hit my family story was case by case basis so I'm struggling with What that case by case basis again means when we're talking experimental or even if there are articles out there that show maybe this is an experimental because it's being used by Harvard and Stanford and everywhere else so how lake in that aspect how does that change that from the matter Medicaid perspective. Well. I'll be very careful because I'm I'm not a clinician and so I don't want to try to speak for the doctor golden tech in the medical side I will I will say that. There. I think when when bills for two case by case it was the situation of we are going to termination of is that treatment in this not true for not just for that but for any treatment which we have to prior authorization is this treatment medically necessary for this individual and that's that's a that is a case by case determination no instance in many cases we have criteria that apply across all those cases to make that determination but it's still termination that's going to depend on that individuals condition and diagnosis and situation because it is a question of is that medically necessary for that individual. Okay so that is different though than available for all the I'm just having a hard time with the terminology with this and when I say available for all that the anyone can come and get this if it is medically necessary for them in order to get as contrasted to do in a cause to point we think a pilot you thing that we're going to this on a very limited basis with a limited number of people will say is that that's were we really want to capacity to limit and that way if for one make it available anyone who if we set criteria they meet the criteria or if the other was demonstrate medical necessity we would have to make that available for them if we were to add that okay. Okay all right. And public disclaimer mark is an attorney not a physician yes okay. I know that just discount the value my opinion significantly but in. No it's not my book it did but all right the. This book is. Debbie hit every question that I had so I withdrawal thank you. Okay so without a disagreement objection what gonna ask is going to charge Dr represent doctor Joe cloud and Natalie Bradford to work together which Medicaid on that and the Mister Ryan and will make more reach the point of contact with doctor Smith and will occur straight that off line so okay alright Marco the Representative one. How may be opening a can of worms but again at the both. Medical professionals here and online and. The someone who can talk about Medicaid and Medicare of so. A question. A I see is reading things about this I the IG treatment and we're. In other places you've got doctors who were saying it's medically necessary and it's being accepted as an acceptable treatment and other places at what point. Is. Is there are there enough cases. That have used it and say it has successfully treated. People with Hanson pandas that it is. No longer a question of whether it's an acceptable treatment. In. The other question I have it's a two part question is when I hear the word and this has to do with my growing up with the debt that was a doctor when I hear the term medically necessary. I think that comes from a doctor so if the doctor is saying it's medically necessary then. Does Medicare and Medicaid not listen to that. So I guess that's the. To port. Question when does when they're not. Cases where it's been used that they say it's been effective treatment and then secondly medically necessary. Who gets to make that call. So on the first for the question terms of when a a treatment is no longer experimental and is appropriate for clients to to to receive. To the best of my knowledge there's not a fixed threshold for that that is more of a judgment call and this judgment this made by our clinical professionals we have medical directors a doctor we have other clinical professionals that are both within the department in those we work with which we also listened outside experts as well including those you a mass I bet my understands that is essentially a judgment call based on looking at the best available evidence for those situations and then the second part of your question a medically necessary that is that is the test for when Medicaid should cover something now they can be get much more detailed article situations but it all comes back to the to the question of is this treatment is this medically necessary for that individual and we'll make that decision will make that on the basis of either criteria that have been developed in consultation with doctors and other clinical professionals were to determination made by clinical professionals like doctors. Hey this is great can you guys hear me well enough to make for me to make a comment yes Sir go ahead our chart okay so I mean when you look at this there's really three levels that are considered one is what does Mister Ryan referred to as. Consideration is standard of care the second is a higher level of evidence based medicine where there had been. See both controlled double blind trial which do tend to be the gold standard to get any treatment. A certified and then funded then have documented successful treatment. The third is a nasty A.. the server at agreed upon. treatment indication and a lot today in today's world there you know we're talking about one very specific disorder there are literally hundreds of very specific disorders and some treatments are extraordinarily expensive way beyond that the cost that you would even ever fathom with I. B. I G.. and so they're they're getting the general rule both insurance companies a Medicare a is that there because they're getting more and more stringent. I can tell you twenty years ago if I said something was medically ness necessary that was honored. As a physician today that is not honored at what you know at face value if you will I mean they look for evidence based medicine Siebel controlled trials and even more commonly now with the very for nearly expensive therapies you have to be to the letter of the law the indication that got the drug with the treatment approved for the FDA so. It you know their treatments that cause. Single does two million dollars I know the medication of that nature and so they are very very. cautious with approvals and they really are becoming more and more and more strange so just to add to that there was a do you know there was one double blind placebo controlled trial that was performed by Susan sweet does group do these really that the that. You know the person who actually first describe this disorder that did not show significant difference in that that expectancy. And so and their recommendation was well more double blind placebo controlled trials need to be for and so I I still think there is a challenge there that that is billions that that is going to be the gold standard that we need to have double blind placebo controlled trials in order for this to be universally accepted as quote the standard of care you're going to have to have that before you get you start to get more or universal acceptance if that makes sense. Thank you doctor sharp the I mean that that's very helpful I. I guess where I keep going back to. I have the benefit of someone within my community who suffered with this. And he got the of the G. treatment and it was a one eighty. The this kid went back to the kid that we all knew. And. Any time you're a player up B. I G.. Worked and then. Player up and insurance says no. Not getting it. And. This kid has been to hell and back. The United States I understand that I do understand that completely and that's that's the roles I know. but I I appreciate you you pointing that out but I guess that's why I'm agreed to co chair this committee is because I want to see this get passed or if we've got to do that double blind study that you're talking about. Let's let's do it. So the I don't have to watcher anybody else here or elsewhere has to watch other kids suffer through something that could be treated so thank I appreciate your input. Yeah the other thing about double blind studies that I think should be brought out in that regard is that typically the way a double blind placebo controlled trial is performed is that the initial course of therapy is you don't know what you're getting are you getting in this case I've yet G. versus champ there be and then and then assessments or may but typically in that protocol then there is a rollover where everyone is off for treatment so it just because it's it's placebo verses I B. I G. on the front in that does that mean ultimately that you can't have a second phase where everyone is afforded the opportunity to treatment who enters the try and that's what makes a double blind placebo controlled trial Basically you may if you will and so I do think there is an opportunity to pursue this we don't have to look at it like will have to pay half the people are going to get treated because they will ultimately get treatment and and those then those responses are typically assessed also. So this is this is Paul Ryan so The pace is the one that eight to brag too much pace is the one that got this ideology trial that's been approved by the FDA gray got up I will send you anything on it but I certainly can it's been announced by Oct the farmers department company sponsoring it it's worth a it's worth into the tens of billions of dollars is global it's a double blind study is you mentioned I am glad you brought that out because we occasionally it in this committee was center ever been talking about this site B. I G. trial it starts it and uh in the first quarter of next year and again it's already been approved by the FDA is phase three trial which you know is pretty high level. I and an eight year a hundred percent right it's designed for ninety two kids. Everybody will end up getting the doses of ideology even the placebo group is treated that way your under percent right you only way we would agree to it anyway this is the humane way to go is by far the biggest IBA G. Trotter run by anybody and is it because it's so it's cool bull is more even more about I think than the outcome they're going to get the US they are doing the US first early and I and I'm very happy with that so when we talk about IDA G. trial that's the that's the will refer it to and you're at a hundred percent right the one that that us we don't rand back I know since we know very well brilliant lady and really good they all ran that the NIH Did not it might might have a very robust the protocol this protocol was invented by including you guys by about eight different university medical centers so it's about it's a pretty big effort because we didn't want the. Anything to every B. look at our question do with this so it's it's request to its two G. robots protocol and so we're all happy to have you guys is as a part of that is those assignments will be given out that they can next week or so as to each I everybody's participation but I'm glad you brought that up it is going to be a goal center so when I earlier stat I the age is going to be there if this thing is successful you probably about a year or two years depending on how long this trial takes to get published That's what I was referring to so I I that that is the gold standard is the not arguable there is a counter balance to that though for folks now that I don't know who spoke just now I abuse represent or warrant or or Senator hammer but it it it says that's all great we got a problem today and we got to the kids that respond extremely well to this city Arizona is not been remarkable because of the tools we developed about measuring IBA G. scientifically from might be that you wanted to does this wage the insurance companies here to do it just because results have been very good Medicaid include. However you you do understand as a as a state entity that there are five other states in the past laws that said you gonna give I've you're gonna cover I B. I G. coverage of these kids is a right way to go we're gonna do Illinois and I think New Hampshire and is this five a. So it's it's not at the thank you all these major universities are using of the standard of care I think there's a lot of weight. To say that we should be doing this in that to your entrant just based on results. And and I think that that's my argument I'm because you need to a ball that over and over Arkansas wants to do with that but that's always been the argument I think is a lot of that is not a good anecdotal Jackson provable and in our studies and amendments study that came out a few months ago wary it was not available by this study but have pretty good results there's there's enough there that a former company is willing to spend the estimates I related thirty million Bucks to go say yeah this is this works and we want to get that because they don't pharma companies make money if they're the named party on the study that works so I'm gonna give that as background the arm that multiple approaches Greg's right you that goes there is a trial we're doing but I but I think that the real question is what do you do today these kids and suffer and and I'll tell you from witnessing what I've seen there are a lot of states that we have clinics whether it's stamper are returning or here it works so this run let me interrupt your first second because I need to get doctor bar on he has to be another conference call and should higher on the agenda doctor bar you on the you still on the line. Yes Sir all right and I apologize would you just get yourself in reduce please to the committee because you are a new on border there understand I want to committee to understand who you are in relation to this conversation. Sure thank you and read far on the cheap on upon academic officer is part of the children's Arkansas Jones executive team. I've been in that role for about two weeks previous out of the chair pediatrics and social being for child health at the university of Arkansas so I. Ship the teams but not jobs and so actively engaged in child health care and improving child health across the Arkansas. I appreciate the the imitation the to join this group and you know it this is this is a This is a condition that we are very committed to making sure we provide those accurate diagnostic. and when a pole coverage as well as treatments were indicated as mentioned we have a a clinic that presently is meeting once a month from third Friday and objects that are our experts and presently we have about twenty five to thirty children that you're actively following and are are trying to do some education work referring clients absolutely private positions about Hi John good prose badges on a municipal Opeth the and when to refer etcetera many of the referrals are actually coming to our own the urology clinics of psychiatry planets he is single family practice physician to recognize that there's a problem or make a referral and then we can we can internally make sure those kids get into the right lane and I wished. But the I'm happy to answer any questions you have gonna be content expert and doctor sharp on the lines twelve is that we're all just I'm a pediatric critical care physician by background and but I'm happy to answer any questions you might have all right and I know you're pressed for another one but I think Natalie is this for. No. Good. Kathy is just. My question is gone back to the case study so I don't know if he'd be the one I need to address it to let's hold on that will go back to that because I was trying to get to doctor bar in before we had to go on another zoom meeting so anybody have any questions for doctor bar. Tucker Vaught will look for to have you just once thank you. Well thank you and happy be part of this group I'm sorry have to drop off early but it's for a of the backseat distribution meeting and that's so important right now to. I wanted to that. Our thank you. All right Dr a miss Ryan did you have anything else you want to say or you wrapped up in your comments or did doctor sharp or doctor Smith anybody else want to respond to that conversation we're having. I did just a final comment I want think a great again for bringing that that idea and you stay up I think it's got answers everybody's questions scientifically and that's what we're trying to do with. How long will that study take I know it's ninety two kids and it's global did you have a time frame on when they were expect to have their results. No and to be honest with you I we have some I will try it in this study protocol doctor Smith I think notices and I thank one should make sure Greg doesn't typically you have up kind of checkpoints during the study so if they get like a hundred percent response you know every kid gets shows a market improvement you know it'll be a land much quicker I I it's typically they're targeted to be two years at the at the low the longest this what I would guess the shortest to be year or you know maybe average eighteen months if you're guessing at that center that's about all I can give you on this and nobody knows it starts out first quarter because the pandemic is pushed back you can imagine bringing these kids into a hostile environment as a present ten Candace kid in the middle of it is a little softer to do just for the safety standpoint so it it but it no later than the end of the for our by March I think they're going to recruiting. Okay A any other questions doc sharp anything to add to it. No I'm good thank you or a. All right Clear. All right the next thing We're on to on the agenda the future legislation. You have in your packet this is this is not final. And I'm on a I want to set a tentative goal to be out here but by three This committee was schedule to be sunset at the end of this year up code county interrupted or plans along with you know one one of the beneficial things as we've had. New things develop along the course of the time that this committee has been assembled including the involvement of the page foundation that came on board in the middle of all this such certainly brought up pathway for to some things not sure we would have got theirs easily so of what Representative Warren and any other legislators that want to join on we are going to propose this legislation it be early filed almost about there's a run pre file it should be handled early in the session is to continue this committee in its capacity as so we can continue the work that we're doing a just need to make you aware that will be in General Assembly or general session of middle of January you know just figure chill middle of April of summer and try to make it shorter if we can so we might be limited on our bill to me but we'll try to navigate through that so it's not such a long period of time but attacher given to use a copy what the original legislation was we've changed the date to expand it and what we would welcome is any input as far as anything that you think needs to be included that's not in there now and fuel give it to a Representative Warren to represent a cloud or myself will be glad to get that corporation in there but just give you an idea we're not done and we're going to create a pathway to go forward not think don't think well having trouble get that done any questions on that. The next thing then would be on the you have a copy of the You have a copy of the you may not have this on the Xoom I'm not sure we get this posted on the Xoom solar articulate it but it's a it is a appropriation request of made to the university of Arkansas Senate universe are sought UAMS for for the funding in order to be able to secure for the nursing and two years two and three as mentioned awhile ago the anonymous donation that was made combined with smart other resources has made available to get the nurse hired full time which they wish run expression doctor Smith articulated that wells to the need and one of the things we need to be mindful of is that they should what Mister Ryan said about the clinical trial which hopefully will bring the necessity for payment is that we need to make sure that nurse can stay on for one to three years until the wheels get rolling and that's what this appropriation is for that will be working on to a secure the funding for so one give your copy that to let you know what that is and questions about that. Then the last thing. Is regarding the committee assignments we've gotten very active with our committee assignments par that's just because limitations placed by co would however we also have quite a bit of substance now I think that the committees can serve it's designed purpose to move forward and Representative Warren and I've been discussing that animal recognize him to share some thoughts on this. Okay thank you Mr chair. Weaver looked at this and what we want to do is ask the committees to meet. On their own. Subcommittee one the Matt Brumley has agreed to a chair that committee in my place and so that committee supposed to make recommendations designed to improve and increase knowledge and develop mechanisms to increase clinical awareness and treatment throughout the state FOR pans and pandas specially for healthcare professionals the second committee is going to continue to be chaired by represent of cloud if that's good with you Dr clown. A and that's more of the an outreach to educators and parents and developing a network volunteers so. What we're gonna ask is that the the cheers of those committees get their committees together outside of when we're meeting and go on now that week at the the Senator hammer said I think more concrete information after doctor cloud and doctor Smith work out whatever on one handout. The we've got some material that we can use we've got some things that are encouraging about where we are. With our pension pandas in the state of Arkansas we're Senator hammer are going to move forward with getting legislation that put some teeth to this so I'm encouraged by what we're seeing happening here in Arkansas so grateful to you Mister Ryan grateful to Dr Smith doctor Patterson the UAMS crew as well as children's hospital we're going to have a great team effort and we're going to make a difference for patients and pandas in the state of Arkansas so just excited about what we get done in the coming year so thank you all and committee chairs if you would get your committees together. All right on that also doc sharp with thank you still on the line along lines of communication and education type information That. Total zero doctor Smith yes one E. all right talk about about the academic pediatrics. Weapon are so basically what I think what was being referred to is The we we could ask our experts specifically being that the team that's running this clay doctor beer Pandyan and operating to to Perhaps we could explore the possibility of developing a weapon are through the Arkansas chapter of the American academy of pediatrics right but doctor bar night you're both on the board for the eighty Arkansas chapter. So we can explore that possibility of developing educational efforts so through the eight the for the pediatricians in Arkansas. That's good. Miss county a question or comment sorry cloud sorry not the issue thank you Mr chair just a question for clarification on subcommittee number two to provide this out reach do we have any funds available. Glad to set that a. A bill news in this is not an obligation but I had a conversation with a couple of the passes this past week they've actually submitted plans of to Medicaid for approval on a large component that is dealing with education to providers about various types of illnesses diagnosis six at our center and the conversation I had with them was would they be willing to consider incorporating educational component Japan and pandas in it and what I told them we would do when we came out this meeting which I know the committee's haven't met. But I think. With all the content we've got now we've got some solid substance for the commission made and we'll move for one of the things that this committee will need to do is put together a proposal that we could submit to the passes as to why they would allocate funding to help with the education and promotion of pan pandas so dark cloudy to be y'all's responsibility to help put that proposal together as to how we can go about educating on a statewide level and hopefully we'll see some funding I did have commitment from one of the passes that we could have access to their platform to be able to put out information I think with what Mr Reiner sharing and doctor Smith of shared about of that platform we need to have that discussion to see if we can you know make that accessible to them but in answer to a question about funding I think that's something that in this procreation we need taking consideration but also the media option maybe it will be to put together proposal to present to the passes and see if we can get some of funding they allocated for from there up of community investment dollars to deal with education on pain and pandas. Lets you already checked out Clerk can. What can. All right any other any other questions. Really appreciate a document doc sharp all the other Senator Jones joined his son Sam for the time out on a Friday afternoon any other matters come before the committee. It's not hammer yes Sir. I just quickly if if they're OR I I've been approached by somebody a foundation that wants to put money into education and awareness you may have just told me that and I missed it is that run through this committee two U. M. S. does it go to somebody in particular UAMS what's the best route for that. I'm gonna say have a conversation with a committee don't have appropriation authority but what I would suggest say is to talk to Maurice A Maurice you still online. doctor Smith. I must say that we will connect you with that districts math I'm here senator. Did you hear met question welcome to email me and me to be the U. M. S. foundation but I can I can help you get in touch with them you may have somebody for the foundation contact you. I that would that would be fantastic it or you can send me a contact person either way is fine thank you I'll do that Thank you of. One of one of the thing it doesn't have to be addressed here but the appropriation of the hundred seventy five thousand dollars just it some point will that come to us as far is this is the budget this how it's laid out that this amount not not that we have control over that just for knowledge base and then finally a last comment in respect to time I hope this and I think that we do but you know I look I look at this piece of paper that was handed out on March twenty ninth two thousand nineteen of prior to the passage of the bill that was just title to provide insurance coverage for the treatment of panting pandas the that we stay focused on that we stay persistent on that it is okay that we run into things that may be now what we want to hear at the time and I'm encouraged by this group that is able to do that I'm appreciative of a doctor Smith and and well. Don't let me just call one person at the I'm appreciative and have everybody we got a man in Arizona that this that shoulder to shoulder with this so I just want to say that is That's not where we work on March nineteenth two thousand and nineteen in and we are today I also don't want us to become. Total vision on IV IG because that's not the exclusive treatment for this since my hope and prayer very few people need I'd be IT is they are and the maturation process of of this sock terrible auto immune disease. I was reminded Saturday as we made our our lives I'm talking to you in terrible attire on a video screen because of a virus that is out there in these viruses obviously affect people and I'm just going to call it a co morbidity okay I mac broadly in And I got the call from somebody. I didn't know how to answer. News the father of a seventeen year old who had been battling with post infectious autoimmune symptoms for quite some time. They run into many of the the the hurdles that so many others have and we talked about today. By the grace of god this father was awoken. It about three thirty AM which you normally at the C. pap on stations Meliton but for whatever reason this ninety did. In the sound woke him up and he went into a room to find his daughter hanging from the ceiling. But in this case he was able to get there early. See she she's got code the. And I would go out on a limb to say it's a high potential that this is affected her in a very very rough rough way isolation in the potential for some sort of cerebral inflammation. We've been down this road many times too many. it while she may be at that end stage of what's going on looking for health and I have a I G. maybe the answer for somebody just getting that a cute. Sign and symptom of this very very brutal disease. I just think that they do need a shot when there is signs that show that they should so I just want to say thank you to all of you for staying the course and I just pray that we don't get discourages we run into things that may not be of our liking because we owe it to. These people these people not pediatrics the Speaker so thank you senator hammer for letting me. The speech that. Thank you for the words Matt I would just say issue chair co chair and recognizing Dr clout in the rooms legislators we don't get into a fight to quit and I think we're we're winning the rounds any other words. With that were dismissed thank you very much.