Arkansas PANS/PANDAS Advisory Council

To speak raise your hand and a push the button and it should light up to a maximum use use again the pig just push the button there. Yeah just raise your hand. Push a button and see if it'll see try speaking about my conceit that will go hot yeah. Here. Yeah all right let's but so are other option is to pick up everything moved over committee room a really don't want to do that because that's going to shortness by about fifteen minutes get everything set up so here's we're going to do if you want to speak if there's something you want to say raise your hand if it's a short question I'll repeat it in order to get the answer because only through the Mike can the people that are zoomed in be able to hear otherwise what you can do is go down to the two mikes at the front table because those will work I know that bill penny convenient but that's going to be a lot easier than the staff have to pick everything up and move over to the committee room on the other side okay and so with that being said the first thing we need to do and I'm a recognized representative warned he has a motion to make representative warned would you go ahead and. Thank you Mr chair I move that the Arkansas pans pandas Advisory Council grant the authority for approval of special expenses to the chairman of the Arkansas pans and is Advisory Council. Argan motion got a second any discussion this is a formality for non members or for members of the committee they're out legislators are what we've got to do in order to be able to make sure that when everybody signs in everything is recognized and legalized so anybody have any questions. All favour say aye aye any opposed. Okay and. Gotten we've even made things a little bit better because now we got a microphone that we pass around so if you want to speak raise your hand and we'll just up past the past the football and you can get to the Mike to read okay so where is the Mike right now. Matthew got or who got to what do just take a moment for everybody's benefit and especially for those that are on Sam if you would go ahead and state your name just pass the microphone around please survey can hear who's here Dan honey. Cat a packet. Matt Bromley. Representative John Rock Arkansas District fifty four. Joe Thomason. All right and. Shoot shoot should be able to have them on. Hey Natalie. Can you hear us okay if you will you induce yourself. Natalie Bradford. Okay Mr Ryan would you get yourself please. I senator Hammer yeah this is all. All right and Dr panda. Is this is on the cover up and then and then abandoned from Arkansas sentence also. All right and the other young lady I'm sorry just yell well rounded and announced late call and okay. Senate Tedford board of nursing. But if. Represent one. Represent Les Warren the vice chair of the committee good to have you guys the the as soon we appreciate your participation. And I'm Kim Hammer state senator district thirty three and I'll echo my chair's comments about glad to have everybody back in I think we're going to we've got a pretty good meeting lined up where we can get jump started to get going again before I go down the list thanks represented warm do you have anything on stage coach here I have gotten to where I can say doctor fan to peer I just messed it up. Dot the doctor and the very and that's their right. Thank you Scranton yes I did. All right just to give you a sneak shot or a snapshot of where we're gonna go today we have set this time aside each month for our meetings so that you can plan your calendar is to wind up paying the pandas Advisory Council will meet of. Also we are checking unit fund up. Okay we will find out before next month's meeting as it is right now this state is not used by legislators for any other meetings and so what we're gonna try to do is get permission that if you are non legislator and your attending this meeting that you would be able to park in a legislative parking spot should be closer to the building specially as we get up in the July August in the cold weather and so we want to we'll try to we'll try to work that out we got up we got check all the details and we'll let you know about that the email the other thing is would like to do subject to committee approval and if nobody objects this is what we'll do it we will have a full committee meeting every other month starting with this month and then on the off months the two subcommittees would be able to meet and be able to take care of their business and then report back at the next full committee assignment that way were meeting every month but we're not over meeting as far as the full committee is concerned so without objection that'll kind of be the trend that will use that way we've got consistency moving forward so we can keep information before the committee but give the two committees which would be the educational committee and the outreach committee there opportunities to work okay any questions about that. Okay and again we've mentioned to you about the sign in sheets and so if you have not signed in yet over here and see my ways to see ways to left and they'll take care of getting you signed in okay. with that being said center Chesterfield has made her way into the room Senator Chesterfield the Mike's not working I'm not sure where the hand held my kids right behind you but if you take the Mike right behind you. And just announcer self please so everybody knows you're here. Of seeing in the future thanks for being here Michael you will go ahead introduce yourself. Thank you senator of both senators are both chairs thank you very much for allowing me the opportunity to be here today my name is Michael CAC I'm with the office of institutional relations with UAMS I have been assigned to the the opportunity to work with this handsome pandas Advisory Council and it is a it is a privilege for me to do so soon you'll be hearing from Dr Vera Pandian as well as Mister Ryan I can provide some more specific detail to some of the things that are taking place but nothing happens without the leadership that is occurred both at the legislature Senator Hammer representative Warren as well as your colleague representative clouded Senator Irvin we are most appreciative for your leadership not only during this legislative session but while the legislature is out of session your efforts on this on behalf of this issue are greatly appreciated we had significant legislation passed and this recent legislative session ACT four thirty ACT six thirty seven an active twenty four which expanded Medicaid insurance coverage for the patients it also renews the pants panda Advisory Council. There has been an extraordinary leadership provided by doctor Rick Smith doctor Smith after more than forty years of services recently announced his retirement and so we are working with doctor very opinion as well as doctor ready to continue his legacy there is a new chair that will soon be announced that we're excited will. Continuing this work is taking place or center of excellence you will be hearing more about this from Dr opinion as well as Mr Reid but it is a center of excellence is a collaborative between UAMS and children's hospital. We are starting starting today we now have a nurse that is available to to provide increased clinic access for the for patients we have a new clinical trial but we're excited to be a part of and the pants incident study which is a multi state three your reference practice study is something that we're excited to be a part of it will soon hear more about that finally we are excited about the great collaborative effort that we as an institution have with the pace foundation and their consortium of academic institutions and Mr church privilege to be here and I'll allow you to call the next people and I'll be here afterwards okay to what we'll get to that in a second thanks for the overview and and Michael's new on assignment to committee and so we're glad that he's here I think he's program we take a little bit of space and time the more reaches up taken in the past a couple housekeeping things I need to get taken care before we get into the meat of the agenda and that is I need to if you look at your exhibit C. except city there these are the rules of procedure that we would operate as under the guidance of what our rules and regulations specially deal with a LC and I need to get a motion and a second but to be able to adopt the. From at a second. Bye I will get back you over there motions but make you. Okay at the sharks sharks are so. Kathy. A discussion to the rules give you meant to look over many questions or discussion to the rules. No discussion to the motion. Maybe I'm overlooking this but I thought we also if they had been to UAMS before twenty one. Do we allow them to continue coming beyond that. And I'm I'm asking that because in my. The county. First from the pans and pandas. Yes that's a great question of specifics of that I'm. Senator You may have a better answer than I do on that just after to clarify okay if we can if we can hold that for a minute right now and if we can have the discussion on gypsy which is the rules of the that were operated by so there any questions to I'm sorry that's right any questions to the rules under gypsy. All favor say aye opposed. Okay. One of the things we need to do next in that is under item B. which is the appointment panda pandas Advisory Council member each of you have been appointed and we do have an open position that's ours to a point of previously of Matt Bromley was the one that was previously appointed to it Matt has volunteered to step back up into that role to fill that position that was created by the legislation and so I would I take nominations of of Someone to up to fill up to. I'm an eight minute back to that position I'll take that as a motion to from. Senator senator Hammer Hollowell renominate mat or get a motion by Natalie to renominate Matt second. Second any other recommendations or any other nominations. All in favor of Matt which say I please. Post. Okay. All right moving on down then two of. All right I to me which is the minutes from last time we met give a chance to look over the minutes and I need to get a motion and second to approve the minutes under exhibit E. which was from our last committee meeting. Which was always back on. December fourth. Your motion to accept images presented. Motion the second. Anybody checked yes second any discussion to the minutes. All favor say aye. Right any posed. All right. Now we're up to the up to the update. On F.. All right we're gonna start off with the. Referred to me lovingly is Dr panda this be the update and if you pull up your exhibit L.. And Dr panda I want to recognize you and if you don't mind kind of speak loud and you might there so everybody can hear if you would please Sir. There are. Any can you hear me OK I have. Can you hear me OK. Yes. Okay I'm gonna sell my screen and then. Senator hammer this is. On the street is there a way you guys have cameras in there that we can see the folks. Is hang on one second we're trying to get the volume up on our end. All right thank you. And the question you asked the Mr Ryan was can we have it to where whoever's speaking that they could be seen on your screen as well. Was that the question. That's correct senator I just so if there's a way of seeing especially the senators read. Your communicating stranger top that they're just kind of dark with the chair. Can we get IT to address that question is that something you all can handle what they want to know. In the photo shooters and mean. Be able to see who it is that's speaking. that ID question. Sorry I couldn't hear you okay okay. Thank. Yeah okay okay it's kinda same information on the hand outside. But we can see this claim that's good I'm. First of all I think thank you senator Hammer of and one of the. Or for these families. Or the center of. I also want to thank all of its foundation for his continued support as well I'm just gonna briefly give you I'm data about that the center for. So we call it as he. A child or person for. The name for and spend those and it is a consortium a on one second Dr panda do we do we have the ability to get it louder on our enters that's something they're going to do on their end. Dr panda you anymore volume or could you look closer to you Mike I think we're maxed out here we're still have a little trouble hearing you. Okay let me I'll While the man then I'll talk louder. Thank my willingness to maximum also let me try to talk louder. So there's the CPA's center of excellence it's a group is a part of our national consortium that's recognized by the pace foundation as you could see these are all the other institutions across the country including at university of Arizona your staff California out of Harvard your step is constant and I stand for so we are I recognize that a center of excellence for the southern part. And part of the country so we are the one of the center for the southern states that. But as a unique situation to get more out patient referrals and also help. More in a position to be that leader for that clinical trials and also the clinical care for this patients and families the state of Arkansas and also on the neighboring states on the southern state. So as far as the eye clinic the updates you know we we thank you for the continued support we had The last year we had a a partners and we were able to have a once a month clinic evaluating these kids and we saw about forty tickets in the last year all right now but are to make we have myself as a neurologist doctor Randy as a psychiatrist we have a doctor hall of the psychologist I say it's a interdisciplinary Janet meaning they the kids get to see all three of us from our different perspectives are you violation and we also have you mean specialist and also infectious disease specialist available if you need to get there and books on the skates and now recently we had we were able to hire an abandoned because of a full time nurse coordinator dedicated for the center of excellence for this clinic so she would be working out five days a week just focusing on. Which has Which we believe is a great great resource now she's being trained in collaboration with the base national consortium a center of excellence with the other nurse says not to be performed in this bank and of we believe that this full time nurse coordinating the clinic will expand or clinic days from you know one day months till one day a week I also improve communication with the families and the not that primary care providers. And with this being no unique center in the southern part of the United States and increased several based B. R. Able to we will we will be able to expand or trying to a population. And would also be able to communicate with the PC bees and. Other providers involved in a better efficient manner. As far as Educating the providers within this state we were able to educate the proshares within unanimous and Arkansas children's hospital by providing multiple educational sessions and we were also able to do something any called at the pizza place which we do Arkansas children's involving all the amputations this state and we were able to talk about our training and the program after the providers also which have actually helped and we have seen increased across from the pediatricians after those programs and we hope to continue to expand those education sessions with with your support. Now I testing Basil but on that research and affect out we will be starting soon the IV IG trial which in a crime to be as you could see in the thank you guys work on the act of being off legal treatment for cancer and as and this trial will probably help us will help us if it works then being an on label not an off label treatment for cancer and the Senate is a multi site study meeting a few centers that are part of this consortium would be involved in the study and we are in the initial stages of the client getting the agreement on the budgets in place and be able to starting this someone it is a placebo controlled trial meaning. Okay so what if I get a VAT are what we call clinical Sugar Bowl but it's We we believe that this will help give us an honest information about if I I just going to help on this bill on the bears and this will help us getting it enforcement easy yes well I'm getting covered for I guess it's easy as well and then we are also doing another important study the incidence study of this. This find out what what is the actual number of of a kid Askin spent as in the country we don't have an accurate information on about that so this is a multi site study also we are collaborating with the university of Wisconsin and the dark malt the second part of this CPA consortium and we are in the process of getting data and data from our medical records to actually determine the I. correct incidence of those fans and those that are condition and also other studies that we are collaborating which can help for the help the the clinical care and the treatment taken care of those children. What about CPA. Again I think I appreciate the appreciate the opportunity and I thank you all that the council and the leaders for the continued support. I'm gonna let all speak a few words anything else I'm happy to take any questions after that. Thank you to. You guys had just saw glimpses of the panel up there so there you go I see the the room and I she's not very good thank you for doing that it it might is banned stage is always just helps to see the people I'm speaking to this. Coming from a world where you have a lot of personal contact. It is a little daunting sometimes is CS just blank screen. First of all what I think Senator Hammer Senator when Senator walk or represent warrant and also represented cloud Act. Followed the process in Arkansas as closely as I could we worked with all the states on both laws and setting up of other clinics in a it's been kind of a interesting couple years but when I watched some of the hearings as much as I could I noticed one of the hearings can't remember which committee wasn't insurance this senator Hammer gave up an unbelievable speech I've worked in there is a legislature for awhile and see a lot of folks around the country and I just kind of one of the late that year a little bit because it really affected me quite a bit he was speaking about effect this clinic is going to have not just in Arkansas but in the southern region of the country which is one of the reasons we we work that out with doctor Smith And we're talking about a family in Florida that it was a military family that it got old Dr Senator hammer and and asked him if they could come to a clinic in immediately said yes and sent them there because that is the purpose of the clinic Mr Arkansas but also also and as he was talking about. Is meeting with them over the phone a copy is voice cracked you could tell it was obviously quite a bit of a motion R. as he spoke of this clinic with a lot of pride and that got to me I'm I'm doing this seven years of age we've gotten these you know multi million dollar trial started so I'm very proud of what this is done by at that moment trying to convince me a little bit of the sincerity of some of these folks in the United States to help I put Senator Hammer right up to the top of the chart I mean he and I had some thoughts on it went Arkansas but also since then about building this clinic up in about building the center up and he asked me a lot of great questions and I am working with him as well and just enjoy it so I want to compliment Arkansas but I also want to give him proper credit I think sometimes Senators get labeled as such as people understand the emotion that goes through their brains he's out there to help kids and families that's is amended tax as been that way since we first met a person it's been that way every time we've had many many meetings over the phone instant hearings so I just want you guys to understand how a one M. believable person he is he's a man of his word we made promises to each other when we were still be able to search I shake hands in the whole days. And he's kept everyone of those And faces kept theirs and I and I really just want to compliment you Senator Hammer and also tell your state a lucky they are to have you. All right let's move on. Thank you recognized it needed to be humble to write so that we. You read my script really well thank you I appreciate that to the more important things so do me a favor because and and decide to excise we've got some new legislators in the room agenda Chesterfield and also represented Johnny rye have come because of their interest in this they I don't think they've heard your passion or your involvement why you are involved in this for the benefit of anybody knew sitting in the room would you explain a little bit about the Ryan about the foundation and about your involved in it just take two or three minutes really get some backdrop as to why you're in this discussion. We sure are Mike Mike rich architected of back when people were not even seeing the scared so long time ago probably as many is that seats sixteen years ago I we we have been having a few means our family we flew around the country everybody who. Was supposedly seeing these kids there are like five in the country another we're all that good at it but they were all pioneers as well so we did not get rate treatment because there just wasn't that much known about it of the some of the user groups this started up or resting meeting between half a percent and for Senator the kids all school kids have this it's basically a disease where you have a. Of wrong autoimmune response to getting strep throat microplastic the the flu essentially and your mother and your automated system fires up and says I'm going to go fight the flu but it misfires as well and then says I'm gonna go track my break so it's just something where your body is not reacting like it should it does a great job solving the flu but it goes up it slows the kids brand when use well into your brain that kid becomes a different person I'm putting this in non medical terms I'm not a doctor but essentially that's what happens it's much more complex than that but. This kid overnight your agenda somebody you've never seen your life so are grandchild who was one point under genius app is getting the world just turned into a completely different human being you wouldn't work walk on certain places on the floor they were contaminated you wouldn't eat the food was contaminated he got out of the car a hundred times because you know he was in the states the end of his life it was chat and it was just such a remarkable thing that we decided you know are. Through HLL and back we decided that's not a good thing for anybody go through especially other family so we sat down with the NIH at the time we would do a lot of research on that. I have a business background from around the world had number companies around the world and decided to take on something they had not done and we're not chartered to do with that start clinics in the United States so that's why peace was founded seven years ago and fourteen with a meeting with myself and the NIH in the bay area and I you said you got you doing good research will start setting up clinics and that's what we did so I have a find board made up of scientists lawyers and folks that I've met through my life for a very effective people and we started Arizona state up the for centre backs once the the board of regents is cited as the center of excellence in that legislature was very helpful and so initial funding we got its it's turned into a a model it was so popular it started second clinic at the university of Arizona Senate once into set is in Tucson Arizona and we still working. And and we sent another clinic and Phoenix AZ A. got it I'm hearing some back. Remember the name of he was one in one million people so this is why this is near and dear to so many of us we have got to find a way to deal with these rare disorders that people don't deal with on a daily basis and therefore many times miss diagnose I don't understand and leave our loved ones really just puzzled as to what we can do and also heartbroken fortunately she has recovered but this is a very difficult time for all of us who deal with these these issues and that's one of the reasons I wanted to be here because I want us to not only look at this but I'll let us go further and also look at other discordant is so rare and so impactful as far as our families are concerned. You you're asking only questions so. Rare diseases I think there's like doctor brand you know and I think it's like seven thousand ten as a lot so one of the reasons I can answer questions can opt to sleep but we took on this one for seven years this is This is bent like that in a bottle we and nobody's ever done since before the country on any disease just headed up by parents essentially granting records right so it's been a hard journey but it's it's amazing and rewarding because they are now tens of thousands of families really they can go somewhere in the country get treated again I. B. IG and and something so we're kind of off label expensive treatments I think my answer to you would be this can be done now that we've learned the lessons a lot faster for other diseases and that I'm I'm an old fellow but I'm I'm gonna live long enough to see that happen and the way you do it I think it is a rare disease is probably a really good track. So the NHS these sports right disease is a rare disease Sagan are cancer on stuff over here and another buckets all receipts a lot of money dumped in the rare disease over the years it had been used Washington DC so one of the reasons we will talk in a few minutes about a thing called an incident study senator the incident study is a study the same how many kids that this disease after people think it's not a rare disease that people think it is I don't frankly care what I fear is about what is let's go find out these questions about around for twenty years and drives me insane when you can't even define your own disease so we've funded this incident study that Dr grant is part of an Arkansas and darkness and Wisconsin three universities in our in our group and we want to take a look that we like the demographics that we want to take a look and see how many kids out this turns out for instance that turns out to be a rare disease which I think is something like less than two hundred thousand kids in the country is considered rare it is less than twenty thousand kids all of a sudden you're rare disease that's kind of the number if it turns out to be a rare disease in some ways that's good I at my folks that we hired in in that now in DC as well as rustic country tell me there's actually probably more money for research and treatment there and and awareness programs which to me is the first step is making people aware so they can detect that American then see Janelle so that's my answer to your question we were trying to take what we've learned in this disease and saying okay we don't want to take seven years to develop each of the each of these rare diseases so how do we learn that lesson now what we do with it in my in my believer is in folks can make a change you know. You've got the human being sitting there in the middle your your desktop there on the top row who is proof that yeah you can change it you can change rather rapidly it's a combination of great doctors like Dr panda who believes in this and the and the treatment the skilled children legislators like Senator Hammer and assent and represent or warrant these these people are leaders but it takes that neighborhood that that group of folks to really affect a problem and without that with just one entity like us that can go find funding the set up these clinics and get starter kits and set up items and I mean I've got I'm gonna offer you guys more information that they that university of Arizona is hereby declares that you can hand out their pediatrician the State Council recognized this right you could do the same for that this is that this it It rep we've made a replica of that's a business background when I was in some of the bigger companies on boards we would always trying to say if we're doing something and we need it tomorrow for another project the process is really not that is similar to the roads excess is not that somewhere right we we battle our way to success that's all great. If we can replicate it for the next thing down the line in one tenth the speed that we've done our job so we really had to bills all along one district created environment with these kids get fixed and that if somebody else came along and said how did you do that we say here's the formula you're the forms here's the process you're the age that you gonna do go deal it's not rocket science none of this stuff is reconciled if regular old people like you when I can do this if we really get the desire to do it and and get our team together so that's my that's my speech I would I would leave it with mother think Senator on that your disease path you're not a law and if you ever need some help you know Senator never knows my number my email. I definitely know is and and I think that health is there and I think and I would I would encourage you to take that route let's see we can go there with the disease thank you very much part. A representative is that correct sorry senator I'm sorry senator Hammer an adequate thing This Is Fanta. Sure go ahead the senator who asked about this GPS I have I believe you said GPS and I'm I'm I'm considered quote unquote expert in G. B. as in this country if we only have about twenty eight thirty not exposed the whole country about GBS I'm happy to talk about it unconnected the off line if you want to discuss more. The wonderful thank you. One will make sure you get the direct contact number the doctor Chesterfield center just for. Represent warns recognized for a question well it's not so much a question Mr run I want to the follow up because I want to give a representative Brian Senator Chesterfield the other connections here I took this on because I had a young man in a youth group at my church in hot springs. Who suffers from this and that I saw a young man who was incredibly involved in school. The popular guy homecoming court athletic great student and I saw a kid spiral down. And his mom is on our committee as well Kathy Puckett. The this this family has been good friends of mine for years so this was such a an easy ask for me to take on this battle. So. And I understand the rare disease. Subject my dad had something between Bill S. and M. S. he went to Mayo Clinic he went to the tester and they said you've got something so rare in lotus just tell you. There's not enough money to research because there aren't enough people with your disease so there's not going to be a cure found for you so I am it makes me even more grateful for you Mr Ryan because of what you've enabled us to do and be able to tackle a rare disease and I agree with you I think we'll be able to model it to help with others so again thank you but I want you guys to understand. That there are other connections here but at the end of Bromley and senator Hammer both have connections with the family and Benton who also have not only had a child with that but that child that took his life so you know this is special to us here on the committee so FOR you legislators that have never been here before you see a little bit more the picture. Our questions from anybody. Natalie. Dr panda you said that that having the nurse was going to allow you all go from once a month to once a week do you know when that change will happen. There's the nurse started today and you have been gone gone through training already so I'm hoping yes the expecting as soon as possible starting starting July I'm sure I we will send out more information across the state or the providers for PCBS either for providers. So they get this information. And. There go ahead run. Thank you I'm sorry I should have Right now the on the training side there are basically three length the segments of training are she's gone through one it should be done with the other two by probably the middle of July and have access to every form we've ever invented there's a lot of testing that goes on now with the nurse prior to the child coming in once a week clinic is just the doctor's presence worse is a full time nurse five days a week that's all she does and the reason you're gonna find that necessary it is because of all these trials we're gonna run I and so my ask of the user group out there you and Matt and and the parents that are in there and it is that we're we start recruiting these kids throughout the South to Arkansas what will give you the rules out a little bit as far as when the trial starts but it's probably going to be right around when school starts and the reason we do that of this national trial is because this the communication of strapping of the disease that you will note is what triggers a lot of these kids in the reaction covid try to created almost a little stone of where kids we're going to school they work together and so the actual number right of cases probably went down right I mean or is in the study was going to be a Prost Bective study but not a chance in going to school to actually start passing the ceases to each other good news and bad news so we're doing a retrospective study on the incident study for that reason just so that the audience understands that but the nest the ask your parents why do with all times the national groups in the state groups is to help us recruit those kids throughout the south. Your regional center that will be true round trip. All right So the nurses. Is out in Arizona getting trained are you all or should be fully trained in up ready to go by when. We're doing this all up ritual at the moment this act that the travel restrictions there is on our still really heavy in the hospitals so we're gonna do it inside an onsite at some point in time but I think the actual training can be pretty well office virtually okay and the duties of the nurses it going to include it Her interaction with the a provider groups because we're going to have to subcommittees one's going to be educational and I want to ask I'm last doctor cloud to be in charge that one because of his medical degree and his ability to you know communicate on that level and then on the out reach one I was going to ask representative warned to take on that one so that we can help push out to messaging through the state of Arkansas will she be the primary contact that they will need to coordinate through or how do you see that so we get good communication. I I would recommend that you have to be honest with you but unless you have. Okay yes. Yes senator I agree I think she would be the primary contact for what those. Okay. I to what at the next meeting Any reason she would she be fully up and train to where our next meeting she could come and we could meet her so that she can have you know we get have that exchange that dialogue face to face. Sure I think you should be able to make it all right Michael can you. All right all right well then we'll look forward to meeting her and and she can tell us about the training I think that'll help or medical staff on our team be able to understand but it also helps to committee so we can all affected we communicate questions represent everyone has questions. Okay I actually have two questions and I know that this is a topic that I visited with some other people in the room. I'm probably the very impatient person but. I believe in the I. B. IG. I know that it works because of the young man in my community who was able to get it. I I saw a man who spiraled down out of control that came back one hundred percent. It worked. And I know that we've got the legislation and I am sitting here asking senator Hammer but I believe our legislation goes into effect July first or very close to that time. So. My. In in connection with that I was worried that we only had it where those people that were Medicaid eligible could get it but I'm being told that's probably not. Wrecked but. Where are we in is there a an insurance question that needs to be answered for I want to. I want to make sure that as soon as this legislation. Is effective. We start getting the IBG IV IG treatment to these kids that need it. And that the insurance is flowing. That's not a law to these kids but they know that it is supposed to pay for these kids to get this. So and then the second question Dr Pande you may be able to answer this one was my original question I was on the wrong document when I ask it but the kids who had this and came to you you M. S. earlier. there now beyond twenty one. Can they still be seen by you. If they still suffer from this. So we seven children's we're seeing them till twenty one but we are. Myself and a doctor I and myself are working with psychiatrist named Dr Claudia unanimous setting up an adult CPA clinic that you M. S. so that's what they will be transitioned to and the plan is also to take new new commerce new adult patients school want to be evaluated for this condition as well. Okay and then does it can anybody respond on the insurance are we sitting on go to get the I. B. IG treatments to patients that need. So. Go ahead. We should be good to go if we determine the space and the somebody needs a the idea I think I'm for me from a maintenance perspective why I don't look at it they're going to come or not if they feel like this medically unnecessary I'll I'll we'll get it done. You're awesome. and we're gonna get Alex to the table a minute and have the discussion about the laws that were passed in with the with the insurance and just a second. Okay. The flyers. That we have copies of the of the flyers that were developed in or sent out to the provider groups. Are there you mentioned awhile ago Mr run about some pamphlets that would be coming in or we would have available are they are they going to complement these two fires one is childhood one is adult or are we going to do any changes to the flyers are so we don't put out you know miscommunication information can can you all speak about that. So there there will be complimenting this but we'll be updating that the nurses information. Yes I think we'll be updating her name and email address but. The rest of the information is gonna probably stay the same okay and who is it on your side that's handling getting this out because that's one thing that that that's one thing that I hope our outreach committee. Good. Could help do yeah our outreach committee could help do is to get that out so will will it be the nurse that we need to coordinate with so that we don't compete or duplicate but we complement. Yes the nurse would be in charge of that but I would need to get back to you on the actual the P. R. will people at the women's and children's site would be doing that I forgot the name but I know we had to use someone from U. eight U. M. S. so did that before okay got a question first fall from Kathy and then we'll go to Matt okay Kathy. I will but line just real quick with catus permission. To whoever can address this because I know that this committee was set up primarily for what we just spoke of and that's a reasonable reimbursement by insurance for the treatment that is reasonable for the patient whether that be I. B. IG here in says or what whatever it is. So my question is this. Is there case management involved in any way because I think as we hand out flyers the question is going to be okay with my limited knowledge as a clinician. I think this person kind of fits that bill. We certainly don't want everybody I wouldn't think that thinks they may fit that bill causing a bottleneck inside of the clinic waiting time in the person that does fit that bill is somewhere in there so Michael question is is there a physician certification statement to be completed to determine medical necessity. From the primary care an Associated check boxes that says have you done labs on this this and this two X.. To give more expedient care to those who truly need to be seen in a very specialized clinic to receive very specialized treatment does that make sense. This is a question for me or whoever can answer it. Yes I think I I think I got the question I'm going to repeat that just correct me if I'm wrong if. Given the number of patient let's say if there's a lot of referrals coming to us and. To prevent the delay of someone who actually needs the treatment. is there a way that primary care provider can do with that is that is that the question it is let me just double tail that if if we see that there needs to be payment I mean it's great to say somebody needs IV IG they're going to get it and I think that that's a true statement somebody's got pay for it. If it's going to be an insurance company there's pre determination pre authorization and then are they really going to pay for it is it going to get hung up somewhere so I don't want there to be won treatment of IV IG and then everything come to a screeching halt because they don't have what they need. I think that the need for a VA G. really depends on that's a case to case basis how cute they are and how a whole city or they are and how to bring them and us do bring them into inpatient open them outside office and so I think that really depends on how critical they are neck varies from patient to based on that that is information that we would use our nurse to get together and she will be the one we'll be communicating with us judging K. this this is really I don't have any bills you know we need to see this it's are a lot of times We A lot of times I think the primary care providers are. Many of the primary care providers are not comfortable. Reading them but I. B. AG are any any other options that we have. Dr panda we have new legislators on the committee let me interrupt you Matt would you explain what the IV IG is please for the new of members of the committee and how it relates to the treatment please. Sure so it's a it's a stardom for intravenous immunoglobulin you know like I'll all of this rain was alluding to when he was talking that's already me on is is meaning your body produces. What we call antibodies against your own party following some sort of infection so what these immune global that does that are taxed those antibodies that was previewed stabbing clearing your immune system to help the help of this condition so it's it's expensive we use it I commonly and other conditions that like like even GPS they like the others and it was mentioning embrace and Roman other army mule diseases like multiple sclerosis and stuff I think it's as far as the event comes to and and as the like of the on the because of the controversy around this are on this topic it has been a struggle to get this IBAT treatment for these kids. Right now that's the bike but is the it let me just reduce it to this is there a clear pathway. For the primary care provider. If they have a patient that they suspect has pans or pandas that they have CPAP is there a clear pathway on what to do next and what is needed of them. So Dr Houston all right and I'm I just got it in our Jackson. that's a great question. What do you when you guys talk about him what is that something you've distributed to the primary care what is the path that you're referring to is I I induce the idea pamphlets about half hour ago and we've just created settlement at this at the Senator we started sharing with Arkansas will be sure the Arkansas this week that one of them is and their primary care intensive one on this here's what pants and this looks like and the second one is years of opera sure how you diagnose and treat so they're kind of they're they're on the way up filling the gap to primary care providers that same what is this thing look like I've never seen it all right I mean if the if I did recognized the second one is that we had a doctor range two is one of the. And the numbers are really well one of the co founders of the center of excellence in Arizona did a one hour ran rounds to primary care folks like over a hundred inside the banner health system in Arizona so we've we've given that are going to give you guys a copy of that if you want to put it up on your website for the state which I hope is by the way up there's one thing someone asked today if they have one that that information starts to become common all aimed at the primary care physician the third thing I would mention is that typically on all the centers they have up for me a lot with the nurse that's a lot broader than you guys you've ever seen it is pretty happy checklist it is also something where that kind of ladder you go up to get the I. P. AG is measured and is also trying of cognizant of the fact that severity so if the kid comes in and there and what we call full flare there and draw suicidal whatever whatever that degree is I that's recognized well so is it just if it can't qualifies the comment that there's is chartered with understanding the severity of that kid and putting them in an order of seeing them in that order so I mean if they don't have been a clinic mode we get a kid like that is on the street is seen in Arkansas I don't care if your question on there so you're seeing that kid right now so it it's kind of up. It's nice when you lose but this disease kind of starts this right over formula's pretty quickly what we do have formalized answers to your questions that I think and I look forward to sending to you guys but you take a look at a you're free to rebrand the right now they got University bears on all over but I keep the eight part and put Arkansas up on that and then you're good to go. Right to that yes there is there is a pathway that the PCBS can euros depending on how comfortable they are. Dr a Mr Ryan. A quick do you think you can get a batch of those sent to us so we can get him out to the committee members to look at. I get in a given to you by tomorrow morning. Also director you also to the defendant with the copy you Senator average do you have access to a okay all right all right. Matt a thing not a representative Peterson to because he's. It's becoming a dear friend as well we're all in the same room together with the we started our members but well. You do Kathy your question yes I do my question is concerning then the one nurse that you actually have a children's which nurse or we're gonna have a separate nurse for the adult population that you a master's is going to be the same nurse. That's gonna be the same nurse she is actually hired through you and most department of state county and city will be she to get consult or consultants also she will be the same nurse Depending on the workload we have to think about in the future if we need another nurse but she'll be the one doing both adult and pediatric okay to kind of go off of what Mr Ryan was saying about this disease I mean this can this this hits and start kids at all different stages of life my son's ex intern twenty five years old he's currently going through a flare he actually made friends with a girl she just turned twenty one years old two months ago she actually tried to get in at UAMS never could get through don't have anybody to talk to her mother wind up taking her to the emergency room UAMS turned away the reason being is that. Young lady had such as anxiety about the being by herself she couldn't go through the door of the hospital and they completely refuse the mother to be there to help advocate for her daughter what's going to be done to help educate each hospital children's and you A. M. S. each and every person that works there needs to be aware that this actually exist and you're going to run across these children and adults that come through these doors that have to have assistance I cannot do this alone but when you're told that there's absolutely nothing that can be done at a hospital that is supposedly having clinics established. How are we supposed to help these parents and these adult children get the the help that they actually need I mean she had to go down the road and got admitted over not for an overnight stay at Baptist. A hospital that is not associated with what we're dealing with right now AT my question is is there anything being done to educate the entire personnel every staff member that works at each of these hospitals to be aware of these disorders and be what do we do when these kids go in such a crisis mode where do we tell them to actually go and get the help that they need before they actually commit suicide. So first of all I apologize for what happened the experience that they had that are that are steps that you're taking to educate the providers inside or institution like that it's a lot of us still need more awareness and education about that so we had done conferences and grand rounds and education sessions to the or everyone including emergency room workers healthcare providers everyone at children's and how we would do the same thing anyway I'm assessable once we have that clinic dental clinic set up that's been going on right now I once we have identified Under the twenty days and other other procedures we would we would do that and As far as where to send them I would probably say if they are an established patient with our clinic a CPAP clinic at okay the pediatric or chill an argument you have to a CPA clinic I would highly increase some to call our nurse. Now that we have full time nurses should be able to attend those calls on a daily basis and talk to us and and recommend families what to do from there and do you have anybody working at night. The answer phone calls of the kids that are in crisis. But may has to go to on call psychiatrist are then you're on call neurologist and. Once well being that we have already is get a lot of them so I I I'm hoping that that shouldn't be a problem. Okay thank you from a national perspective but also where is all the when that happens in off hours day or weekend I typically the prescribing doctor if it's a if it's really at Norman's favourite that will get hold of our. We have an immunologist Senate mineralogist they will actually the our folks will call doctor gains on the weekend or night saying I've got this you know I've been educated doctor dance so I have this hands okay you've been seeing another adult or or some. If the Asian of that and they will then come up contact gains if you'll see that person on the weekend as an emergency but at that point an emergency cases so that system was the very first one that ended went to and also the we advise them to go to it needs to be strong probably every quarter of a meeting with those guys that's kinda how we did it works pretty well it went down a little lunch bags or in the evening at Beatson said guys we talk about this now for two or three quarters are you having any trouble making sure the communication sat it's all great to have a meeting but I think we set up that kind of like we're the visitation especially with the are very critical that they have a first hand knowledge I'll end up I got a problem I think it's this can you help me with that that's exactly how that works and I and I would record it works pretty resolve it the first year was rock yes it's easy our guys you know they didn't know a thing about it but now that they're educated and becomes a standard practitioners all that it goes very smoothly for sure it's going to be a little rock and this lady went just started today your first name and just go through training so I think right to give a little time to mature but there are answers to your questions that are you know these are not uncommon questions in their great questions but I think that's the way you solve that emergency one coming children it's just education that mayor de with the solution. I can I can tell you now when the emergency room provider sees someone but this or suspect something they automatically call which is which is a great improvement compact of past they just send them away right. All right who's got to make sure we can the center Chesterfield has follow up to that. Thank you so much and each one of us as we have a legislative committee is on that will help mitigate that problem for you or for parent call senator Hammer. Hammer has the ability to call out edges Ladyman he is on our any of us can and they usually will facilitate getting individuals into UAMS that might not otherwise be able to do so they just wanna throw they income pick up the phone he has a lot a lot of geez and he took and. Your friend or your own child to where you need to be UAMS. Thank you Kathy to get your questions answered. Yep that'll be the last thing on the agenda is because will bring up to two pieces of legislation up Michael your new kid on the block for you M. S. are you getting all those taken down for you can help for sure Sir we have we have taken good notes I appreciate all the questions and all the comments I do want to say there was some specific legislation that was passed again not only continuing the the Advisory Council but making sure of the coverage for Medicaid as well as for health insurance plans as with any new requirement with a health insurance plan there is a. All rules and regulations promulgation process that has to take place but that is something representative for that was that was done by the legislature all right we're gonna hold that because we'll get to we're gonna get to ensure segment Natalie. That's your hand out. Yes I was just gonna say You'll have been on this for several years now with these kids and I will say children still as a whole still has a ways to go on but I will say we have had more positive stories in the last couple of months of people going in for other things than we've ever had but I will also agree with Kathy that UAMS is still doing. eighty in my opinion a not great job I had a twenty four or twenty eight year old was recently admitted and actually her parents was told that they would not do any E. G. because they didn't know how to handle And so kudos to children's still a ways to go is that with some of those providers but we are seeing more positive stories than we have ever in my opinion but you A. M. S.'s a continuing to fall way behind. Got it Michael John okay. So. Let's do up kind of building the agenda toward the next meeting and. Going to start sharing the chair responsibilities to represent ward going to get sure the next one so he'll he'll have the next one but we're taking notes of peer to build toward the next one we'll have the like to have the nurse in us or any other communication will get the pamphlets and make sure they coordinate with the flyers that have been getting sent out Michael would like to take up the issue of what we gotta do to improve on the on the UAMS side would like to have also. Just a report from both children's and UAMS what has been done as far as actually working to educate the medical of population because going back to the meeting we had before we got hit by the pandemic I think we're having to build believers among the medical profession at both children's and that UAMS because we call it new or college just embracing or accepting a different concept of I think we've got to focus on what we doing to build believers at children and at UAMS or at least educate them not to say knowing get a referred to the people who can. Read them before they just you know shall come off Here's a Dr panda I'm gonna ask you about the appeal process if a parent presents with the child that's been referred to you by a PCP and use a through the process and kind of going back to the checklist mac was referred to all go they get in your hands and you say now it's not pander pandas it's something else what what's the appeal process for what do you do for that parent in order to give them some sort of direction a reassurance that everything has been done can be done. So if we determine that that's a good question they don't have and spend as then we talk about from our knowledge from what we gather from them what else could this be and mmhm and we will try to help them out but for example if there any abilities services that take that there might be available within locally and we will talk about that and doctor running from state contracts and find a psychologist I also talk about the resources that that might help them based on assessment that's available locally and if we feel like we need to get some sort of and now has like a picture of the brain MRI or something that we would arrange that after retirement based on what we think can be arranged that and if you feel like you need to see at a different place like an infectious disease or immune specialist are a genetic doctors and B. would help them set up that based on where they invest in the local school set up here if they left the product state then we will I'm help work with their PCV the primary care providers to get get that done. Okay the the it was mention about the website awhile ago who's the custodian of the website is that you M. S. or children's of who's the custodian website. You M. S.. Okay I know you will be a we will be able to getting that the children's website also okay. Can you give us an update on the on the website or I'm not I'm that's not on the flyer that has been handed out. And I'm wondering. I will make the note on it will get that to okay if we could have that as a subject to talk about next week because if we're gonna be getting flyers from Mr Ryan we sure want to get that website on there that may be something that the education subcommittee could do is to help work as far as content to goes up on the website Mr run. Okay Senator number there's actually two websites we answered meetings we're there awhile back with the department of health and I gave them a reference point to the Arizona department of health website work instantons I don't know if they ever did but that's not to say I would probably recommend that you do that statics and gets through wreckage you authorizations or the state I it has on there are grand rounds when there's all that room stand for all of the N. I. A. has all these are are these forms I'm talking about us of the State coordinates right now Billy and I we see just that UAMS and Arkansas children's does is saying because all the reference material they have up there also appears on the website for the CPA Senator accidents and they're all duplicate essentially the major papers are so it's a way of getting to the primary care focused because they all go look at that site for guidance right even though we have a special the site you guys are special about that the best way to spread that information the of the state so I would suggest you look into that I don't there was something about that that I had a lot of conversations are Arkadelphia we regret per sign and they said they're going to let's you might want to check and see if if it yes yes again rarely use me to take the Arizona department of health website replicate the data and just change the labor I mean this really not that if all you've done that Robert state's law. Dr Thomas and can you follow up on that or do you have any knowledge of that Yeah I. Coordinating. The House. You know we've basically like the. Okay about when we come back in our next committee meeting if you don't mind it would representative war before because you'll be chair in the the out reach and maybe all to can coordinate all that so we got we got a good flow of everything be good. Okay all right one final note Senator Hammer on the Noor's. She's a brand new new be right so I I I used talking about having her come to the July session or the August session your regular session on. I like to August. Be my opinion we have or at the next one and we might I'll I'll work with the representative warning we not even picking back those subcommittees to be on the same day so while we're all here and then we could have that coordinated conversation so everybody kind up is on same page knowing that she's a newbie but we will be our daughter But the. Your late at least we're all on the same ship sailing in the same direction. Yeah okay. And that be a Monday so you your clinic days Friday right doctor and your clinic days till Friday. Thank you senator Hammer yet in here that you your your clinic day is still on Friday. Okay correct. Right I just I would want take or where you away on a clinic date sure sure okay. But one other thing that we're going insurance less anybody's gonna question tell us about the number of people that you that a number number of patients that you've seen in the clinic so far and the number of referrals that have been sent to you how big a backlog you have right now and give us a real time data set. So right now we don't have any backlogs. We were able so we have a few it was scheduled this month end of this month and we have to rent out change the dates little but because of or availability but we are if you finished by a finish the Jones clinic are we are all caught up. so essentially we actually did not. explode and so we end up seeing all the efforts of you to see. We do not exclude any of the agents of families based on the criteria that we looked at before just to give that I'm I just to make sure that you know they get a system we provide them some information and so of where to go if this is not the answer in this. I can get you the exact numbers for sure I don't I I think it's close to summer of forty to fifty range but I can give you the exact numbers if that they'll be helpful. Okay one thing that and I don't know who would do it if the nurse would do it It would I think be beneficial if we begin to build a database as far as without violating HIPAA obviously of the referral sources where they're coming from geographically especially in the state so that one the outreach committee starts to do their job if there are areas in the state that are not we're not seeing referrals from that we could concentrate in those areas to those providers and do due diligence so I don't know if that could be the nurses jobber I. T. there maybe we have to use our staff or combination of but would like to make that a subject to to work on. All right we're gonna do one better than we have so far we should be able to get to that information but we can keep track of that moving forward also send the okay great we're gonna go to talk on the insurance but before I do any other questions on any of these subject matters up till now. All right Elche you might come to the table please. There are two pieces of legislation that Well that deal with insurance that were passed this session. X. four thirty and six thirty seven. And they're your exhibit G.. And Alex work done the. Your honor. I. Let's get to the microphone whoever got to Mike. Hey what's up while you get settled and so are you still on the call. To date for you still on the call. Yes I am. One thing I like to watch on my mind suggest is that when it comes to. Education throughout the state and I know the nurses in the clinics are the front line that you know receive a lot of patients into the clinics out throughout the state. Are there other things that we can do to. Get the material in the hands of the nurses so when those patients come in they can be better educated can you help take care of that or bring some ideas to the next meeting about how we can utilize your nursing network. Yeah let me let me give it some some thought to me because we have contact for the nurses but not contact for each employer. But let me give it some thought might come up with something. Okay. All right Alex which which Senate bill to work on. You're you're well that work as well It where air that's all it was a. Right to twelve and I'm Alex Stevens I'm a staff attorney at the rear of Legislative Research the bureau is a nonpartisan agency so I cannot give you actually are actually interpret or provide intent of what the acts say so are the one that I worked on was Senate bill two twelve which is at four thirty it's effective date had emergency clause is March twenty fourth twenty twenty one. And it took the temporary language that was. Past I think in two thousand nineteen and made it permanent so it is now part of the code Arkansas Code and it just did the creation the duties the thing that is new if you look on page three. Line twelve. We were the council was first received that support from the bureau of legislative research but in subdivision two H. two would you mind holding Michael closer teacher says the council shall receive assistance from. It added that the errors on the Steele children's research center. And then it has a sunset provision on page four. One five three nine eight six two eight. Commission the sunset clause. What specifically does that refer to is that. It means the council will expire as of December thirty first twenty twenty three unless another bill ends is passed by the General Assembly that extends it okay we'll we'll do that Kobe just reject things up to be honest with you so this gives us through the end of next year of which we come back file legislation to continue it will be in general session we would be meeting anyway so we'll be able to extend it you know subject to it needing to be extended exactly our and again that effective date for Act four thirty is March twenty fourth twenty twenty one Senate bill three eighty seven is ACT six thirty seven and it is dealing with Medicaid beneficiaries an off label use of. I B. I G. is in that one yes. And then at ten fifty four in its effective date according to attorney general's opinion number twenty twenty one dash zero twenty nine is July twenty eighth of this year twenty twenty one okay and which ones that on I'm sorry that's ACT six thirty seven the Medicaid one. Which is Senate bill three eighty seven. All right Senate bill three eighty seven. Yes Sir. All right and we got Jessica coming or talk about that one because that the oils. All right the one that you dealt with those Senate bill six thirty nine right yes Sir okay and is that the one you said the attorney general's opinion is attached to. No it and all the bills that were passed during a legislator general session that didn't have an effective date according to the tourney journal that twenty twenty one twenty zero twenty nine their effective date will be July twenty eight twenty twenty one all right so. Senate bill six thirty nine the effective date is July twenty eight the effective date is July twenty eight twenty twenty one but the provisions don't begin until January first of twenty twenty two go look at. On page. The active you look on page three of the act. Okay one twenty eight yes yes. All right so walkers through the bill and then just give us the layman's explanation of six thirty nine. A. Senate bill six thirty nine which is now ACT ten fifty four provides off label use of drug treatment to treat pediatric acute onset rural psychiatric syndrome pans and pandas it defines. Health benefit plan which is the insurance policies and all the different things that are included and whatever or excluded from that it defines a healthcare insurer. And then on page three of that act it provides that. The clinic. Should provide a patient specific treatment plan. And that worked for IBM I. G. and that would allow for it provided a health benefit plan should provide coverage for the IT off label. Off label defined as one. What is off label off label is. I don't think it's defined in the act. Is not defined so. But for. My understanding is that it is like it not for what is prescribed for or what it was designed for but it he might have a better idea. You want to get locker use the understand of off label use. All is. Okay. All right go head out. Anything else not on that one but On the Medicaid one. I can get just come over here and then the insurance commissioners the is responsible for the rules. All right Insurance Commissioner. So you all would be would you know when you're bring the rules. Yeah. Okay. And just for the benefit of members and correct me if I'm wrong about this thing doesn't kick in until January first twenty twenty two right January first twenty twenty two yes Sir okay. Everybody. Hey and. To make sure that all. we we see the need to certainly be be aware of that and and make sure that the the details of how these how these are paid up or addressed in the rule okay and for the non legislators in the room the way the process works we get the legislation passed it has to be promulgated through the rules which gives the agency the chance to develop how the legislation is going to be put into practice and that's part of the reason for the January first twenty twenty to date is we had by the time to get the agency to get the rules in place so those rules as are being developed by the agency will go out for public comment and one thing you want to be mindful of the is of the public wants to be able to give input as far as how they think the rules rugby written by the insurance agency just. Maybe more than coincidental or not I'm also the chair of rules and regulations so those rules are going to come before us of which I chair the committee on the Senate side so we'll be able to watch it and and keep an eye on it so I'm asking the insurance department let's get it done as quick as we can so I don't think it's gonna be a hard one select we get it done so when January first get you we ever got to rules often done ready to go make your question yeah I'm not looking for reserve any sort of resolution here I just want to bring it up that I have a sense of interest in the House things just of an actual or is there use you here you have C. P. eighty he is next to plans next the panda is heard a database mentioned that somebody says I'm diagnosing you with pans. Somebody else crosstown says I'm diagnosing you with CPAP is I'm going to make a difference in a database and then when we start funneling things down and insurance we're talking about off label usage. Are we going to look at Pam's pandas and CPAP the same and are we going to look it P. A. E. outside of the city the same I'm not trying to get. really confusing here any way but I think that. I'll just say this if you have a domino pain with nausea vomiting that could be three different things that can be nausea vomiting which it pays at a certain rate we have Donald Payne the gets paid at a certain rate we're going to be a domino pain and nausea vomiting which can be an advanced rate and get paid totally differently so I just hope that on the front end of this we don't look at the back in and say Hey doc if you would have just said the right letters we would have been able to reimburse this correctly you get your patients taking care of I just hope that we're paying attention to systems to respect of the the nurse that was higher today that we build the system as soundly as we can. For we put the driver in that system and not set them up for some sort of failure. Libya I think that this goes without saying but I'll say it anyway obviously to address some of those questions we need to have outreach to our three major health insurance carriers and in either the rulemaking process or or through this of a through this Advisory Council to get make sure that they all get on the same page as far as some of those issues that that your address. Natalie your question. Yes so I'm trying to go back and forth on because I didn't get to print out the Bills but did I understand that one of those bills actually says that it would cover IV IG is ordered through the way messenger Eldridge clinic. It doesn't necessarily cover all providers. Now it has to be a patient specific treatment plan established by the childhood post infectious autoimmune and successful office PC clinic established by the universe of Arkansas for medical sciences in collaboration with Arkansas children's hospital. So the. Okay so the the short explanation is. That forty four to be paid for it would have to come from the referral of the center of excellence. Yeah right under patient specific treatment plan that's established by the center of excellence yes right so so if the patient is cleared through the center of excellence then the then the insurance would kick in a paycheck it is like a referral but if it's if Natalie seen the patient in her clinic but the client or the patient goes through the center of excellence and it's deemed yes that the patient needs it. Then the the payment would go through even though. Natalie might be the the primary care physician exactly okay okay. Okay so explain to me how that actually works because my son got diagnosed in Hinsdale Illinois that's we had to travel out of state years and years ago for that specific diagnoses we have follow up appointments with Natalie because she is the only one in the State of Arkansas that tickets case since this was years ago Cameron has had eight I the IG treatments so for the past two and a half years we've been fighting to get more through Natalie Cameron has been seen by doctor close the year at UAMS. With a pre existing condition of pants. So therefore you're telling me that Natalie Bradford cannot. Prescribed by the IG treatments for Cameron anymore and it's going to be denied. At that I don't know I can tell you that it has denied it had item then I I don't know that but I can tell you that ACT six thirty seven says if it's going to be off label treatment for ideology for trans and paying the than it has to be under a patient specific treatment plan established by the clinic okay and that's like telling the kid that had cancer and had chemo three doctor a goes to Dr be for a follow up he's relapse this kid's gonna go back to doctor as a in order to get the chemo to help with the treatment it to me it doesn't make any sense I mean Cameron has done great with the IV IG treatments we hadn't had any problems in the past with a provider that has actually. Prescribed it. Now we got to go through all these other channels and other hoops to try to get out of the idea back on the table. According to ACT six thirty seven I know that's what the access that's all I can give you you would need to talk to the sponsors to see what the intent was and see if the agency can tailor it a certain way that is what the access and just disclaimer for the member for committee members they cannot give legal advice and that's what she said you got to go back to the sponsor which is me so let me ask limit I hear a question Cathy but let me take them out of the middle the sketch for a minute and Dr panda. You. You've heard you've heard the explanation the bill are you you have a copy that and are you familiar with that. Yes I do have a copy of that but I think yes. I'm in the case of Kathy's real life situation that you heard her explain. What would happen if Cameron was to come see you. And you. Ran him through the center of excellence and determined that he needed IV IG treatments and made that recommendation. And I'm asking the church office to weigh in on this one to everybody can weigh in on this one that if you determine that he needed IV IG that it would be able to be paid for once we get the rules of the regular stabilised. So we would Thank you is in we would see him at nine clinic or if we need to. So we would do an evaluation and then we will be able prescribed by the AG and that could be done based on that situation it could be done as a home infusion are to be done. The hospital adult patients setting or how well it works. Kathy. Okay so camera would have to come to you and do basically more testing in order for you to. No I am so. Sorry sorry to interrupt you There's no testing involved because like we all know on Penn state as a clinical diagnosis that I want to get in too much of the clinical aspect of it there's no Martin all actual testing to look for blood or anything like that we will go through his medical records and we'll talk to you and I'm it's it's it's a clinical evaluation done going more tests. Okay. We can have. To the infant saying that Hey we have seen We have seen Cameron we have those you know we have we have examined this is what it has and it but we would need to continue with that. Okay. Represent one. I'm jumping in so I'm hearing the whole conversation so in a case like Cameron's would. UAMS Dr panda would you be able to accept. Information that they could bring to you here's what we've been through. That along with seeing a patient like Cameron. And be able to get him treatment if you agreed with what had been done. Yes we don't have built on the whole test and everything again I mean we would be yes we would accept all the records that they come with and if we need to applications no we would be happy more than happy to talk to the provider of record tomorrow well they had been staying up what they have been getting treatment from and we would accept that. Okay because I am talking with senator sit sitting here beside me. I don't think it was ever our intention to block anybody I just think that we knew the UAMS and children's for the two it agreed to work with us to. Take this on. And we didn't have anybody else in Arkansas. It was. Undertaking this at the time so. What and then led to that in the discussion of getting these acts through. One of the things in a I want per month spot but I think miss Ryan might even been in this conversation of was that for what we're talking about and the cost of the drug that we're talking about in in dealing with the insurance companies and to not have a go rogue where a bunch of PCPs around the state who did not have the working knowledge of the disease we inserted the center of excellence at children's S. the safety valve to make sure that if they would they would have to have some dialogue with that center of excellence in order that if it was ordered then it would leverage insurance companies to have to pay for having that individual go through the center of excellence so I want to make a private interpretation and Dr panda name body else room way in in your situation from what Dr panda just said we would have to restart the whole process over again because it's only been established. It may be that it would have to go through them and they would come through and say yes he needs it and that's what gives the leverage and to go to the insurance companies and say the center of excellence is said and diagnosed yes he truly has this is not psychotic this is not anything else it is it is established so that we can we can process it through I'll say this to you Dan as these rules are written that's the intent. That is the intent of the legislation and the sponsors that that's the way it would work the. That UAMS is of the gatekeeper so to speak they said this the center of action center of excellence yes that's that's generally our center centers of excellence work where they can have the diagnosis and they would just double back with similar center of excellence to get a sign off so to speak to that everything was in order. I restricted and again this is where it's very vital to make sure that our carriers you know somebody from Blue Cross United and any better are are all on the same page with this and we'll make sure that's the case as we go through the rule making process. We don't want anybody blocked that is truly. Qualifies and has that need exactly. That and and that's why the center of excellence became so important is they had to be the clearinghouse. To affirm the diagnosis. So as to. Get the insurance company to pay for the treatment. All right of Mr run. Yeah I'm Senator Hammer you're exactly right as yes exactly we talk about the St represent workers in the room. No there is a problem on both ends over prescription under yours and that cover both of those the center in Arizona was the same center in Arkansas you need someplace to validate that this treatment was appropriate that is inspected the set up is you did a great job of working that I will tell you it's not intended and is not practice here in every you know the extension IVI G. prescription has to come in personally go through a process and the ballot they that that's not the answer we do a lot of this by just second your second here's the file here's a record I hear the parent you can you can call the doctor themselves and after discussion and you know the other person at times. Five so the whole thing the bill to be used not required but it also it bill because it at some point in time we're going to get cases where thank you have a G. description using crime that is not for and and that's only the open section but it we in Arizona we made each of the property here thank you they review the case so whether it's thank you your visual that I. When we're doing here a virtual section with parents it can yeah there far away because a lot of reviews on and. And that says a lot of ways of doing it but is not intended to bring it to the necessarily property types of don't second. And that that'll be the benefit also having full time nurses because full time nurse as I understand it is going to be able to do a lot of that screening pull the information together to shorten the process for when a referral is made so that when Dr panda looks at it Raniere the team looks at it that we can get to that determination. Whitaker she's the she's the collector of all the data so yes that is exactly correct they are laid out for them if they have questions they can answer massive after but most the time that data is pretty much all they need to stay pledge that I it's very rare the action turn people down but we we the state in our state has recognized our couple providers they're rounded more doing it but there they were using that little bit and the action not prescribing the proper procedure yes. In fact or not as bad as they were gone the other direction but. Long story short that's you we try to make it easier property player I think it's a it's worded correctly one thing I will add the whole intent of this national IV IG study that paces started a couple years ago is to clarify the rules by rich discount this idea at the treatment of is described on the label not awfully Blakemore after this trial does so we're represent warrant talked about earlier where these kids need that treatment that it's then I'd get all these appeals and all this delay you take a kid that needed that you know two months ago and all of a sudden for months now they get it that may be what you want to the damage to the brain to so we tried to explain everything we do even the process of applying for I. B. IG we've modernized you guys think that the same system where everything you submit as expedite all over other words the insurance companies seventy two hours to respond we don't installation up that work well with us so we made that kind of a standard in Arkansas but we have a ninety five percent acceptance rate the other five with the I just thought they have lost the case in two years so it's kind of what it can be done it is not a it's a gate keeper of sort that's a little strong in the sense they don't see every get it for free rather actual C. the jobless they need to so anyway long story short that's lasted two ends the trial will is really to gauge the effectiveness of it it's not to gauge whether it is a fact I think representative warns that earlier he sees that he believes that affected them so why so as all medical community right to prove in scientific research on label and we don't go through all this off label legislative. Stuff that we have to go through that's that's why the trials. And and and let me make just one comment bill. Once once it is once we go through this we call face phase three trial what he called It's a FDA clinical trial it's like it's like COVID when they did the call back to nation right of center. But but once once it goes through that trial phase which is under way now right there there was ninety four that we're gonna be picked as now it date now they have to negotiate with each university would just like. Person the Goshen what the federal government but we're expecting September is when they start recruiting kids after that it's probably about a year yep ninety two kids is number and then after that they have to write it so I I'd figure in which case two years if we pushed everybody your that right but then once it goes once he gets through there and it does what it's supposed to do that that is a almost a mandate to the insurance companies. St great is amended its stock in Arkansas is going to ask you about it sure and since you're on that when you guys wrote this rule or the self insured companies like coca Cola or Amazon I date they're not covered by this I think is the only entity probably not required right. That it could. I mean I would. This is probably the SELFINSURANCE as well. Did did this discover the self insured as well yeah yeah. Okay okay yeah perfect all right Kathy that. Get your questions answered. Okay all right now Alex are you sure about that but generally speaking mandates that apply to health insurance companies only apply to licensed companies that are regulated by the state in self funded plans are only regulated by the federal Department of Labor yeah so you would have to go through that you would have to get those regulated on the federal level so and that's obviously a problem that we run into of of quite often is that you know of probably at least half or more of of of folks in Arkansas or covered under self funded plans so that is a that is a a drawback that didn't get. Some S. Ryan didn't get your walmarts in your JB Hans and those those groups right right yeah but it got it got all the other ones. We got a bite of the apple. Okay remember those Senator just so you know I I give you a little bit of an experience we have with them we sat down with the bigger ones in the state of Arizona and and they all agreed to just to ensure the kids there wasn't we didn't have any opposition because it was the belief of the state in the Medicaid people all you just sent our recent weather because they make their determinations the self owners make their in the Medicaid or can can help with this but the self funded make their own determination so if you went to Amazon or Walmart down the street and say look all these kids are insured except yours we've been insure the day they say yes I mean they they determine exactly which diseases are and which treatments that cover I don't it's not really that hard to do once you have as much ammunition as you guys out words Medicaid will of the state legislature passed it unanimously I saw on every vote your added was one opposition I mean I if you're Walmart for instance in your state I I doubt they're gonna have six say no to that. Well we do and we can we delegate that to doctor clout I bet he'd be proficient that area on the education subcommittee go have those conversations with with those groups and and see if we can come along voluntarily represent right. Call for. So the question was if this begins January one you said January one right. That'll be thank W. goal of this committee is to begin the dialogue with those companies that are covered under this legislation and and see if we can take the evidence to them and get them to come along voluntarily which they're not covered under this bill so thank Debbie good thing for some reps and senators to meet with with some other self insured companies and. What they'd be willing to do. And if you need any help from a from us since we're now pretty well nationally are you gonna have to it's remarkably section coming up in the next year one of the Arkansas that if we can help interview with those people are influenced their decision that you need us to let us know. I got a feeling will be calling you but I think the chair's going delegate that to representative cloud in his subcommittee to take that one on and to to get it get it going all right we're coming up on two hours so let's do this Jessica Biel our staff member helped draft Senate bill three eighty seven Jessica would you just trying to give us the overview of the bill please and. To to her defense I Carter shorthanded and called her up about thirty minutes ago so. Go ahead give it your best shot ACT five at I'm just a bill of Legislative Research I handle and health care legislation. And at six thirty seven it authorizes the Arkansas Medicaid program to provide coverage for off label use of drug treatments including IV IG to Medicaid beneficiaries who are diagnosed with pans or pandas or both under a treatment plan established by the center of excellence Excellency in Arkansas and that requires the Department of Human Services to apply for any federal waiver state plan amendment or other authorization necessary to implement this act. Okay. This going to have to go through rules to. This would would just have to go through rules. You mark what it would if inflation of record please. Thank Mister Clark what department services I think the short answer is we think so that's and we're still working through we think it will probably require a Medicaid state plan amendment that would come for the normal rules process. Okay and you sit in the room you heard or admonishment to the insurance department try to ex but I know you all got a lot on your plate but time frame. I don't know you for certain yet I think you'll probably to be towards the end of the calendar year before rule can be placed with us said with sametime Ross look and see what can we do or we could go and cover things starting July twenty eight even while the rules and process so we are looking at options there that be good or any questions. Okay thank you. All right I think we cleared the deck as far as what was on the agenda subject anybody have any questions or any final comments let me why you're thinking about it Michael you get baptized by fire today so you got a questions of us or anything you're not clear on or. No Sir we've of we've taken good notes we've got other people watching taking notes we've got a good plan of action coming out of your so thank you to a privilege to be your okay I must say that will have a full committee meeting next month and then we can work with the appropriate chairs represent war representative cloud maybe some things can be going on between now and then with everything we discussed today next month we'll have a full committee meeting and then we might going to the other every other month after that to address everything we talked about today represent warn you anything wanna know sure anybody else health committee have anything else you want to share questions. Really appreciate all of you all being here today and we will get the agenda as quick as we can for next month no this for committee were Jr.