Arkansas PANS/PANDAS Advisory Council

Come to order for the panda pandas Advisory Council thank you for your patience a representative warned a couple others got tied up on a pile pile up on the interstate we want to wanna make sure he was was here to help co chair this means so thanks for your patience especially you that have joined online. first of all a consideration prove love the minutes from may twenty third can get a motion to accept the minutes from anybody online or in the room the one. Thank you okay thank you have a motion second. Yes second. A discussion about the minutes. All favour say aye aye aye opposed okay update on the trawling discussion we're honored today to have Mister Ryan co founder and president of the page foundation joining us online and Mr Reiner yep there somewhere Hey are you sure you have the floor or the microphone in this case and if you would would you give us an update on the pharmaceutical trial and discussion of the pathway forward for pan pandas treatment please. Sure the trial is. A mistrial on second we have anybody can adjust the volume or is that I'm here. Okay could you buy Miller Mr run. Is that better. you got you got any more to give. No that's it. All right we're gonna we're into someone are in hang on just one second run a okay. People to my could put Mike on the Laptop and. Harvest run try that if you would. All right is that better Senator. Do I. Okay hello there is logic in the go ahead thank you. All right so on the the I. B. IG trial I don't remember how many months has been under way but they went through about a three or four months they call it sixty pause but basically it checks all the administration check boxes and safety check boxes in each trial centered on which there are a number United States and it's and if the HX so this is very difficult for a phase three trials of the use as high level as this is which is the ultimate type of trial in the United States for any drug um that pacifying colors so all the universities now they're involved and they're above a bunch added I think this Stanford Harvard Dartmouth university audit was already and you guys were already operating center St six or seven I think all around the country and they made a decision based on the success of this trial so far to expand the same guidelines into Europe specifically at this point targeting Sweden and Italy in universities there to rob a state trial so it's a big deal it's it's by far the biggest IV IG Trollope done for kids I've ever heard of thank you actually anybody's ever heard of and you guys you are smack dab in the middle of it and by the way doing an outstanding job as follows the pharmaceutical companies and our pace foundation which has helped a lot in the recruiting of it some one caveat I would give you is that your committee which is set up for a great interface between the public and the legislature on this issue I would I will send to Senator Hammer I will send you the flyer that they put out with all the contact information on how to recruit kids County gives an age range a little bit about what the kids kinda look like as far as a medical profile. I'll and it talks about the. For any expense the incurring getting to the sites to run in the trial such a pretty good little pamphlet up missed out the law what the drug companies I I think it's used differently I'll send you a copy of that today and if you can send that out to or send the to the Committee members and the department of health and other agencies UAMS children's hospital and get that kind of kick in a communications blast out for trial entries I think it's it be hugely important just to remind the committee this trial is on the sixth sense of I. B. I. G. yeah and in severe patients that are probably mostly first incident kids and they try other other methods to them rather quickly if they don't work they go into the IV IG trial so I think Dr panda and you UAMS and the university of Arizona have each the same number if I remember right three or four kids and it's been kind of low profile trial so what we're hoping for specially since you guys are in the south you're the only university in the south with this trial and I would whatever your communications folks the legislature or the health department or Medicaid it come up with to spread that to other states because all travel. To go out and and solicit other folks other kids in those stages at going to be really critical so the the one thing that's hard with this trial is to get enough kids sentence I get ninety two is the total yes Europe will join but I'd rather this was very dominated instead to be US dominated in its results anyway there are the ultimate goal the trial if it's successful is that I. B. I. G. wouldn't have to be mandated by any laws anywhere becomes an FDA approved drug for this disease and automatically gets assigned there's no argument to the insurance and I guess there could be if they want lawsuits but it it it would be wise and it's like you know any cancer drug what he just described if it's approved by the FDA it's automatically going to get reimbursed by the insurance company so it's a really important trial you and I think eight or nine other states have passed laws to try to bridge that gap for the families but but this is the ultimate test so I really encourage your your committee which is dedicated to making awareness in this this should be their number one goal they should be obvious in the doctor's handing out this to every pediatrician they know every primary care doctor they know every school nurse they know because those folks are going to see these kids first so I will stop by low speed chair but I think that I. B. IG trial is actually going the scientific wakes really well and been extremely blessed by the FDA side of there's no problem with that in the the problem could be getting of kids in there so if you could do that that would be an amazing I'll so that's the the trial the other reports that Arkansas was involved in that are historic shaking in some ways in this world is there's never really been an incident study of this disease and they coupled with university of Wisconsin and Dartmouth to create a study I think it. Probably over a year to go through all kinds of medical files trying to trace the incidence rate of children and that's done so much out for publication they're going from germ different journal didn't journal which is typical in the medical world to get a report written on that hopefully published by the end of the year and I the two folks on the line your doctor radiant Dr Pandey work normatively helpful in that study so that's that's kind of what I have on the trial and urgent plea to help on that from all your departments and then also I'm is in this report. All right any questions from members. Is there a time limit on the trial. Mr run as far as when it closes or is it all driven by them getting enough open it's open till it's done Senator they they I think. The long term data I've seen is the end of twenty four but that includes not only the trial taking place but then they got to get all the results compiled they've got a lot of writing to do there's to ninety two page protocol largest what I've ever seen cars I'm not an expert protocols for medicine but it's pretty big so I would guess they're giving themselves six eight months to write it after they're done I Dr panda rated with notice lot better me what it takes to summarize the trial but the the actual official ended up on clinical trials dot gov with this is registered is the end of twenty four. Okay any questions from up members. All right Kathy go ahead. just yep pull it down and hang on state. The okay you're good to go again okay just another question the mom with the child that is actually twenty six years old looking to see when and if we're ever going to have an adult. trial treatment. Guideline process anything in order for anyone over of the adolescent age. Because it doesn't stop when I turned eighteen years old. Mr Rankin what what are the age limits on those that can be accepted into the trial. I think it's six through seventeen Senator by member right it is the child's trials a pediatric disease as it's term I answered your question I am from a national perspective there is a pretty decent movement there's a user group in New Hampshire that focuses on adult detection and treatment but this just I don't under way so getting guidelines or something that just come in S.. At one. Sturch Hey you if you all could mute if you all could double check commute your competitors unless you're speaking please. Mr Ryan take a take another run at that if you would. Your it is a matter of concern I have a few we can look at this is the specter that hasn't been around that long and to get up the think we have ten clinics now we just added a clinic in Canada and around the United States has been a herculean effort the last four five years so are about adults don't leave us I mean I I have grandchildren that I've gone through this or now adults and it is a tremendously good question so I. Patient dedicating itself to pushing that along on the other hand what you take in that effort you kind of still little bit from the kids sides we're trying to get that standard of care for the most of the population to get affected by this they can we we can detect and cure much more easily than someone whose product what is a concern of ours And again it's in my family so I think we're we're pushing it but I think it's going to take awhile to develop I know that University of Arkansas is interested in that I don't think we worked out all the details of guidelines because it's tougher for adults sandy's the standings on the line she sees both as doctor handed doctor rainy do if it's tougher because it sat in there was probably not being treated correctly at the beginning in most cases but there are kids that kids meeting a young adults who are all different types of treatment now and so I don't think it's devoid of having guidelines I think it's a matter of trying to get a couple universities to collaborate on that and put something out that's a I think it's something of that transitional care is the other issue that ties into that where these kids are teenagers now are going to within one or two years become adults right is a different world and if we don't work out a good pattern to stand these off to their I don't care providers I think we're missing the boat at we are the only we're on the only tribe on the island right now this interested in doing that so I think it's our responsibility percent add an I. think Dr radiant and doctor of your pending would would agree with me on that I think it's a it's a void we need to fill so. Yeah don't ever take that we're not working on it but all these things take time to get the. To get a guidelines set up but I agree with you thousand percent. A doctor. Ranier Dr panda would y'all want to weigh in on anything on the adult population and take on what Mr Ryan just said. Thank you. I think we're both pediatric specialist and we treat the pediatric population so if they're going to be in adults any kind of adult program it would need to be called coordinated with an adult provider. Okay a should realize that when ash I apologize to me we get you M. S. up to the table will will. That conversation of okay Kathy all right all right any other questions about the trial. All right then let's a move on today which is the discussion of the guidelines for primary care physicians. Treatment of pan pandas and We've got to Dr panda's we lovingly call him and also we have doctor rainy and then doctor done you want to come the table anybody else from you M. S. one come to table. Or will will go with them okay. What I'd like to what I'd like to do is just kind of set the. Set the table for the conversation and then open it up to doctor rainy into Dr panda to add on or to correct anything that I might say or give input and then we'll open it up for for questions so if you'll just bear with me I mean I want to reference a couple things that kind of such table and then also to what before open it up to doctor rainy induct panda among come back to Mr Ryan and ask some give it have him give us some input as far as the guidelines of that are used for the for the treatment okay. in ACT six thirty seven which was passed in twenty one you may me uncomfortable it was email. It's in the mail R. run distribute copies of that but if you have your email accounts opened up it should be in your emails it's ACT six thirty seven it may say Senate bill three eighty seven But it's ACT six thirty seven. And why you're finding they're looking for orders being distributed let me go ahead and just keep the conversation moving on page two down around lines twenty two twenty two. It speaks about the disorders associated with the infection or both under treatment plan established by post infection a center of excellence and so it refers to the treatment plan those established through the center of excellence and that's were Mister Ryan is going to come in in a minute with regards to that treatment plant. If you go over to. At ten fifty four which was also passed last session. And it's on page three. And I'll come back to this a minute because I know some you'll just get your copies are you gonna pull up on the email if you go to act ten fifty four. It's on page three. Starting with round line twenty six. Talk about disorders associated with the disease or both on or after July first twenty twenty two under a patient specific treatment plan established by the center of excellence which is housed at UAMS and children's hospital. And just to kind of framework it if a patient presents. To a PCP. Who is working in conjunction with a neurologist and with a psychologist appropriate level. And there is a determination that perhaps the patient has pans and is going to be treated in the protocol it outlines what the guidelines are leading up to the ordering of the I. V. I. G. so that we have a unified approach in not only the diagnosis of whether or not the patient may or may not have pans but if determined to. Suspect to have pans here's the protocol that is accepted protocol to be followed in whether it's the center of excellence or whether it is a PCP out in the state that has that collaborative agreement and working arrangement with the psychologists or the neurologist then they can pursue treatment as long as a follow the protocol that just kinda lays the groundwork is now Mr Ryan what I'd like you to do is if you would highlight the guidelines for assessing the pander pain treatments in Arkansas that you that you have placed and what is accepted nationwide and all the other centers of excellence would you talk about that please especially the department that's the meat of the substance. Sure I didn't get the email center but I'm a I wrote down the act so I think we're I think I'm familiar enough with them center there where they were read and In the guidelines themselves if you could down to items CD which is the first discussion of all. Kind of protocol for these kids Mr Ryan hold up a second if you're if you're in the room it at the top it says guidelines for accessing panda pandas treatment in Arkansas it should be in your email correct should be in your email if you're not in the room and we have copies of anybody in the audience wanted or could we get it I have access to my email but I don't I don't see it okay it's. But I think it I think that the guidelines as you read them would be in line with what the guidelines are your two senators I think we're okay either way so I just go through this documented if somebody in those guidelines thinks it's different they should pipe up but I I think this is this these guidelines were written at the beginning it's just basically describe in the center of excellence and and points a and B. it talks about guidelines up on something called pandas physician network so they are national these are not the some kind of Arkansas invention there doesn't stand for you of a armored the same guidelines as the same group of doctors to talk to each other all day long the guidelines to have in that Henderson PPS side some flow charts as well which I think help and kind of steering what guidelines the most most of primary care doctors would follow up through prescribing IV IG so but in articles and see of the guidelines that you have in front of you it talks about essentially this is a licensed physician which be a pediatrician the site it just names every a primary care physician essentially after they've tried two or more of these prescribed treatments which include general antibiotics and and said said code considerations there's a list of them and these guidelines is also the same thing in these in these guidelines on the pandas research consortium that work and I think the university has published something but those common guidelines to starting with the first two steps up yes folks out in the community primary care physicians according to these guidelines administer of the typical things you with your for a kid as far as antibiotics and steroids are. And cents and there is no improvement then the guidelines say they should that primary care physician it should then call their local PD that lists the number of doctors down rheumatologist immunologist a neurologist at the confections disease there's a list of products that you would commonly find in the medical world that would prescribe IV IG especially the children at list those people so that primary care tries the first two steps they don't work all the the specialises subspecialists listed and get a prescription for IVI Gee that's all normal these guidelines or standards of normal practice the center of excellence role in that is obviously would be applied without practice as well but we kinda determined that center of excellence as a specialty at the and more for insurance and second opinions but this these guidelines are reflective of what happens in the rest of the country rest of the country in all the states is our normal guidelines you would see in the community anywhere of some of the states have laws. protecting the IV IG part of it some don't that's what we ran this this worldwide IV IG trial because sometimes the prescription private yeah G. probably as many as half the times gets turned on by insurance because it's not a but prove by the FDA and saw in in short that's that's with these guidelines call for that guidelines on I. B. IG or even specified in here that after three applications of I. B. IG the subspecialists is basically required to measure the success of that I. B. I. G. and if it's positive then to continue on with the I. B. IG treatments so nothing stops this from happening if it's having a positive effect on the cat the the center of excellence Cummins comes into play so instead of I think we're a lot of people assume these original act you guys passed were the Senate backs is must see every kid to get IV IG that's not what this you guidelines are intended to do its president to the community makes a committee practice like pretty much any other disease I know some of your committee members for wondering about that from time to time it enables them to go to that treatment the normal treatments for this that passed on IV IG if it's possible as long as it's guided by of a primary care for a license primary care physician so in a nutshell that's with these guidelines to the very last piece of this guideline is allows the insurance companies which you know rightfully so get nervous about this because there's been some cases around the United states and states that don't have what you guys have where it's over prescribe somebody goes seizing cat per yeah I've heard cases with a super time as prescribed by the IG which is. You know just how legislative bad medicine but it allows Arkansas to help or protection of if insurance company Medicaid or the state hasn't an objection to this ideology application it can then ask for a second objection of this. Second opinion from the center of excellence and I think that's a very accepted practice we do and Arizona you want out laws Gerry common to have that protection there and I would that probably all sunsets when the I. B. A. G. trials done you don't you won't need that anymore it'll it'll obsolete itself so I in your legislation on or your act you should have something that fits you know sunset by the I. B. IG trial or sometimes maybe you want to put on of what you're comfortable not having that second opinion which I think you should be at some point that would be the other way that to make sure it hasn't and date the does that doesn't go on forever. For any questions from doctor of rainy Dr panda would you all like to comment or anything that you'd like to share. I think that's. that the lands but board or practical or we are taking on number I think I'm happy to help the the the primary care physicians all that they have a kid that they're seeing I want to talk to us and it yes in Arkansas sensitive heart how to treat them initially be happy to provide that and it becomes difficult of course they can consultation we can see that Kate and are not trying to make the center of excellence I'm. But the market is that ninety with doctor any site cactus and myself Assembly and psychologists for a conference evaluation and treatment. Dr anything are you agree agreement with that are you good. Yes I think they said everything I don't think any of that thing okay. All right. Questions from the committee. Co chair for. I just wanna make a couple of comments the number one Mr Ryan the I am so thankful that we have had the ability to work with you I had the opportunity to visit with Mr Ryan on one afternoon this week the. Dr panda doctor rainy. You know when we first started this what two or three years ago senator. Five. Long time ago long time ago. Pans and pandas was. Just what is that tell me what the letters stand for. and. I was just learning about it from a good family friend. Kathy Puckett son was someone I had in my youth group. that I worked with and I saw this kid who was right athletic popular. DO a spiral down that no one could explain. And we. I began the the pans panda journey nothing like the public family experienced but. I'm like okay I'll go to fight and see what I can do but. As a look at where we are today compared to. Just learning about what the letters meant. We're so much further down the road is it perfect no. of course one of the things I want to see Kathy is a continuation and thankfully Mr Ryan you have family members so you appreciate the continuation with the adult population who still deals with this. We we don't quit the work but to me to see this today looking at guidelines for physicians across the state to be able to use. And others to be able to recommend the I. B. IG treatment. And have the access to doctors Henderson rainy to be able to consult with and to. Take a recommend that they go see you guys when they have more severe cases that Arkansas has become a center of excellence. It just we have come light years was telling Mr Ryan that it's amazing as one of the chairs of this committee that. I have people come up to me and go. Let me tell you I have someone in my family with and pans or pandas. And I get sought out just because I'm on this committee to me it's like it's become a topic a conversation piece and to me when that happens we have made progress I've got another family that I deal with the. from my church and School that I served on the school board for so. It's so good to see that pans and pandas isn't understood. Term in that we're making progress so I'm glad we got the guidelines but it's a fight that we will not let go we're going to continue so that we get The pocket family taken care of and adults taken care of so so thankful for all of you guys who have been doing the hard work behind the scenes. Thank you representative Warren I have one comment to may just go with that one Senator Hammer you and I we all talked the other day and I I wanna emphasize one thing that makes this work these guidelines work at Dr panda mentioned that when you have a primary care physician out there they don't have the background in this disease that they don't feel comfortable with and this doctor Pat is going to a doctor when you probably can't do this forever but I'd date they should get their numbers of that access to them we did that in Arizona a few years ago and the doctors here handle lots of phone calls they didn't require the kids to come in they talk to the primary care and we said what do you see in and they talked about the right kind of antibiotics the right kind of steroids or co because their words to give these kids are instead that's a critical success factor in getting this in getting these guidelines to be practiced in the proper way and for the primary care physicians to get the confidence they're going to need to really execute these guidelines correctly if that peace isn't done I think you're gonna have more confusion and misinformation and then you'd need to have I know we're we're there is all right it's working in Dartmouth it's working in the other robust areas Stanford Harvard they make it a real effort to get out in the primary care world there are flyers that the U. of a is developed that I sent Senator Hammer does say Hey primary care here's here's a transfer and this year's CD so they even have a comparison of classic OCD purses pants and as they try to get that primary care even school nurses comparable that there's a chance this kid has passed Brandis and that's the question comes up now what or why do you should have standardized guidelines out there hopefully the universities but they might if not they can get them from any other university. I put them out there I think they have as a primary care facility and after that don't call these docks that's what they're there for that's what the center dives there they impart knowledge and they can individualize it to a case by just getting some of the common things stay here but they're open to doing that in their their trip there tremendous human beings of all good doctors as we have throughout the country and and to get this done the first year to I would recommend that that that's where you go call sandy Bennett Safeway Sandia's great knowledge of this and if she doesn't know she calls these two and gets information so don't let that become a barrier what it should be is you've got a place to call to say Hey I'm a doctor I get this cat I I'm not I'm not sure I got your guy I got but I'm not sure what should I do and that's what you should do with that that makes a roaring success and all the states and I think I would recommend that as it does probably the number one thing besides me question that B. I. G. trial. Thank you senator but let me do that but I think the number one thing in Arkansas is to is to take that practice up and make these guidelines not just something on a piece of paper but make a real. Hi Senator Irvin. Thank you have I was listening as I was moving from one meeting to another to the testimony I can agree more with what was just that one thing that I think the guidelines you gotta make sure to also is that if you have primary care physicians merry two one at merry to everyone who rule Arkansas who has found and has been in different cases that are not always presented we we you have patience sometimes the president really interest you know with one in a million type cases sometimes and what's hard when that occurs is those doctors to do the work and he try to understand and dig down to figure out exactly what's going on with that patient they run into that bureaucratic stalemates of not getting the prior authorization for the testing that they need in order to do what they need to do to fully diagnose and understand that patients so part of your guidelines so critical I couldn't agree more you've got to really make sure your primary care physicians out there really understand this and that but you also have to make sure that they can navigate through the bureaucratic Systems that we have in place through privatizations in order to fully treat that patient and I think that's really really critical that's my first point the second point is considering CM means a on pants and pandas and making sure that those things are available I can tell you by watching my husband go through some CM means that are just quite frankly ridiculous that this is something that could be incorporated into a semi that would be meaningful and I think appreciated and that and so those are just be my two takeaways I left the guidelines that really kind of bumping it up to the next level is you know looking to make sure we can navigate that that prior authorization and what those steps are for asking for the different types of treatments and making sure or test or whatever to make sure that those are available so that that primary care care physician can get their patient to the specialists that that they need to get to that's very very important and then the CMA so thank you again for those comments by Mr honey and just really appreciate what you said about those folks are working out there in the field along side of our specialist you know trying to trying to figure out what's going on with our patients and and I appreciate so much you guys taking the lead on all this and all the work you guys have done on behalf of those families that you know and they you know Arkansas is well served thanks guys you. Man. I want to echo a little bit what Senator Irvin said I think when we started this some five years ago. What stood out to me was the need for reasonable reimbursement for practitioners in their efforts to see what's wrong with the person in front of them. We found ourselves in a pretty narrow lane is it referred to the P. meaning pediatric. Is. We move the pita. Post infectious so I was pretty encouraged. In ACT six thirty seven says Medicaid will cover drug treatment for pans or pandas under the following conditions. Listed in those conditions is the treatment plan must be established by an approved pan's pandas provider. One of my questions is what constitutes a approved pants pandas provider. And who's doing their proving and how often are they approved and must they be an approved pan's pandas provider if they received information through CME or otherwise to suspect that. What is going on with the person in front of them can be attributed to a post infectious autoimmune response that may be causing some cerebral. Inflammation. In this meeting December thirteenth of two thousand twenty one we said that we were going to be laser focused on a statewide network of providers to get the information to. It would help us in assisting with. Prior authorization. Which at six thirty seven says prior authorization must be obtained to each treatment providers must submit the current treatment plan to the quality improvement organization along with the request for prior authorization. Authorization procedure codes and require modifiers. Can be found in the links below. My question is is it relates to the execution of the treatment of patients the president to a primary care provider. How are they may be aware. If they are even approved. Ask for prior authorization. With my limited experience in healthcare prior authorization prior to termination now. On whether something is going to be covered can be very cumbersome and can be quickly. That door can be quickly shut leaving the provider wondering if they're going to be reimbursed for their time. Are they going to meet their quotas in key markers to see the next patient. And sought. I am so encouraged with all of the work that is being done. But at the starting gate whether it be an emergency room physician or a primary care physician. I'm wondering I'm not wondering. I'm seeing that over the last few years they were unable to get this thing started and I'm not talking about ideology I'm talking about. Putting them in the pulmonary steps of treating a cute. Presentation of something that may be of the post infections autoimmune response that's causing some cerebral and supple off the in so. I just really want in closing for this. Just really want to see how this is done in the real world. When we have a center of excellence that is challenged with volumes. That if we're looking patient to patient. I think we have some providers is see a great volume of people. Those people's presentation at the time of that visit may be very different then when they are seen for prior authorization that must be given by an improve clinician I hope that makes sense I want the people that are in. A crisis situation. Feel like they're given a. Really good shake it saying what is wrong and I want to providers to feel like the work that they're doing is going to be met with some sort of is we started five years ago reasonable reimbursement if medical necessity is deemed appropriate. Okay. Let me up let me give you some relief to when your concerns or whatever heard was concerned. All rules were promulgated its real one twenty seven and do they have a hard copy of this you should have a hard copy this if you're on June you should be able to have it in your email it's real one twenty seven. And. The health department disagrees because of I'm not I think some of this may be read through there so if you have a disagreement one about say feel free to voice because I just want accurate information out there. What a rule one twenty seven that was run and pass in response to the legislation that we passed under section four. Coding fee for evaluation. Every health benefit plan shall permit appropriate claims coding fees charges for related healthcare services including evaluations performed by medical providers in association collaboration with the center of excellence okay and the objective today is that we have the definition of the guidelines for being able to access treatment. And because the rule it is passed and this was done by the insurance company okay as a result of the legislation that we passed. Then as long as that primary care physician in collaboration with a neurologist and psychologist having reached the determination that neither of the first to steps required in the in the guidelines have been met and fulfilled if he gets to the point that is determined by the neurologist psychologist PCP that I. V. I. G. is the next step that satisfies requirements for ordering it in the in the rule in insurance under section four. Create that pathway where it should be paid for now to what level it can be determined somewhat by the policy and that's you know just like you've got cancer anything else we're not dictating that that may be another battle that will come back and clean up in the next general session but part of what the goal of this meeting today that we want to cheat is that we have Mr Ryan working in conjunction with our center of excellence in the the folks involved here we have clearly defined guidelines that establish that whether that patient is seen at the center of excellence where the patient is seen by PCP who has that collaborative arrangement with the psychologist and a neurologist in arriving at the decision of eve IV IG is at all all required treatment the center of excellence is the fall back that if the PCP out there doesn't have that arrangement as required in the guidelines they can consult with doctor rainy Dr panda in order to meet the criteria of the guidelines and be able to get it get it ordered And that's that's the overall framework in goal and intention a clarification of today so that if their PCPs out there which I know there are there see in people because I had a conversation with you like Northwest Arkansas then this creates that pathway part of the issue we're dealing with this and see if we have any got to sandy at she's gonna get the spotlight here in a minute but I mean they're booked out until January and the reality is the resources the resources that they're operating on as far as capacity is limited unless we put more financial investment in their thank you they can't go much further than what they are right now because of all the awareness it's been made out there shall like I forgot which one said every time a pamphlet gets mailed out the call volume goes up to sandy. Are what this is these are the guidelines where we can open it up so there is the ability to network and branch out and here's the guidelines that are rich can operate by a larger green with that they're they're meeting the requirement in order to get reimbursed My neck written anything said there I just want to reiterate that the. We're focusing on the guidelines if there needs to be a clarification clarification legislatively the senator and I will not hesitate to come back and make that clear because what we're doing is. The center of excellence cannot take care of every case that is coming especially with the understanding and knowledge spreading throughout our state. We've got to have others in the state who are qualified. And they want to help with this. Be able to do this. Richmond. And with the resources of the center of excellence but if if something gets question we will go back and amend the legislation to make it crystal clear. That our intent is to stick with these guidelines allowing the the neurologist the. The primary care physicians revert to be able to begin Source of the center of At. I just wanna be clear that I understand. The collaboration with the Is that one of the check boxes. That must be checked prior to pre authorization. This is my interpretation and if if I say anything the child on gree with doctor rainy Dr panda done this time to. Make sure on the same page. The term collaboration has been the center point of the discussion and the intent today is to bring clarity to what that word means so that we can have clarity moving forward. When the work collaboration the the point of collaboration is agreement with the guidelines that the center of excellence holes in those long as those guidelines are adhered to which generated from doctor of Mr Ryan and and brought down to our center of excellence because these are guidelines that are universally used by the other center of excellence that is the that is the of epicenter of collaboration that's it now if the PCP out there suspects that they've got a child and maybe they don't have that requirement in the guidelines of the door all just in the psychologist Dr ready doctor panda are available they're doing it now my only concern about doctor rainy Dr Pandey is they've got other duties other responsibilities we really for lack of better term have dumped on them and they are if they're at capacity beyond giving out the generosity of the heart your time there's only so much that as a human they can do and they've really gone above and beyond the call of taking on additional load in order to help get us to where we are you know with quite honestly there's little financial compensation which is something we need to come back in January and clean up because if they are providing consulting services helping collaborate with the PCP that may not have an are all just for a psychologist and they are doing now the. Out of the the belief in the. You know what we're doing here we need to take care of them but to your point. To the point that the collaboration is we agree to collaborate with the guidelines that have been presented that allows the PCP out there somewhere laws will to collaborate in agreement with these other Vaught blessing on whose have much PCPs out there that are operating offered their own different interpretation and thought processes or has to be structured to arrive at what is the proper treatment plan. Promises that none of them. The collaboration part I'm does that just pertain. To the portion of the I. B. IG treatments or is that. Treatment of a patient that is classified. In in this algorithm does that make sense. If if I if I have a heart attack victim that needs of cardiac by pass. Their steps that lead towards that loose catheterization there's an thank you for others ask for there's things that that are before that do do I do I have to get collaboration. And pre authorization for that antibiotics the INSEAD School of lab work all those things for those things to be covered because my effects yes my fear is that if there's not the collaboration. The pre approval we close the door before we ever opened it to get into the ideology so I'm a repeat back a question give an answer I want miss run to clarify that Your what I hear you asking is at what point does the collaboration begin. And and. When does it when does it officially take place with the client does it have to take place before the first round of antibiotics is given does that take place for the second at what point does it enter my understanding what was run to clarify or correct me is the collaboration engages now obviously you want to develop a relationship with the center of excellence or as in the requirements your psychiatrist or neurologist. In accordance with the guidelines you want to have that ground work already built. Before somebody presents so you don't have to catch up you know when they come up I think that's just good thought process you want to have that relationship or establish and build out your network but as far as the point of collaboration. To fulfill the requirements of the guideline is going to be at the point that you think I the IG might need to be ordered you've got have that consultation with those two Mr Ryan have a wrong on that are called the outer. Or can we think the guidelines today the normal practice is one step primary in in the I. B. IG segment of your conversation once that primary care physician has go through these guidelines and they've tried two different styles of treatment which are laid out. The determination of the primary care physician is that then council with in a row just rheumatologist immunologist as specified in the guidelines first point a collaboration for I. B. I. G. at that point it's the collaboration between the primary care physician and the their local neurologist that's how that's how these guidelines are written so I think the the one way that probably augment this a little bit Senator is to have the center on their website by the department of health or wherever you think it's necessary and observed five medical practitioners to put these guidelines out there they're not magic they're not unknown there no quite well throughout the country and I think that posting a bit would give you that primary care doctor without calling panda ready a description of the kind of treatment station give these children before they go the route the guidelines then and maybe a specified this again online says to that primary care once you've done these guidelines treatments and specifically says two different kinds of things here's here's what you do you call the used special doctors and you get an idea of the script see if they agree with you and then it goes on further to match question and it says the collaboration then gets determined after the three the first three ideologies it got to be some success ratio to continue IV IG so it's pretty pretty specific down the line and I think once the the guidance guidelines but also the typical primary care treatment is laid out by the center on its website or some other publication that because public should be easily handed out the primary care physicians for your department of health that that would really kind of take. And eliminate questions of people having to and we're discussing documents which I think if they're put out there in real life people would have a lot more ability to relate to the I also think it's a senator you went representative washes up the wide intelligent that Arizona didn't do we kind of had to follow around with that but that makes a good point you know this is all written out there could be some conflict of understanding I think that clears up if you have the center put the guidelines out of writing because now you've taken all this wording about specific treatment and said well here are guidelines so here's what we're recommending you do that's now writing the second part is as you go through this first phase but making this public you're going to run into some problems I'm not talking about every little problem I'm talking about something that becomes repetitive that needs to be addressed by the legislature to say well we've got a problem it don't thirty two percent of the primary care of folks trying to get money back to seeing these kids is being does not come up with some actual numbers that just case by case and bring it to you folks and you go and clean up those lost if required but I think this is a nice trial run all right in the sense that for probably protected trial run and it's it's because it's going on all kinds other states without having those problems so I think the specificity we can't just wave a guideline expect the world to see if you have to put it out there you're going to have to publish the center of excellence treatment guidelines on what you should do with these kids because specific a calls for two attempts to treatments therapies and their specified in these guidelines as to what they are so I think that may answer all your questions is just put this out writing it's not against not rocket science in this section national practice that's what I would that's how my action to be. Represent one. We had a couple of things I agree with waterfalls that I also want to live on one I think you already I'm sharing this information to all the good decisions for our patients to was this date on guidelines everything's being shared by sandy estamos they reach out to us I think either number two I want to talk about the PA the prior authorization one of the First Street means that the last year and the guidelines need any prior authorization those already or I'm a regular antibiotics to treat the infection if there's infection on the here are leave of the over the counter I believe that you buy or inflammation and so a lot of the initial processes need any prior opposition parties treatment first perspective until the end of the day come to this point I've got J. I just want to clarify that thank you. Mister one thing they represent warrant and and I hear your concerns Matt but miss Ryan you clarify you correct me if I'm wrong a conversation we had last week was that because the guidelines are in place and because the guidelines are designed to do what they do. The experience of prior authorizations being declined is relatively low because they're been there's been such a process to get to get up to that point utilizing multiple disciplines in the decision making process it makes it hard for the insurance company to decline that prior authorization which we as legislators do have some authority and some power working with the insurance commissioner to help encourage insurance company law Mister Ryan is that an accurate statement based on your other experiences that because these properties protocols are in place these guidelines very seldom is a prior authorization declined once it reaches that level. Yeah I of the data we have shows that in most states that that this becomes common practice that it goes from a to a denial typically the fifty percent level especially on I. B. IG as panda points out none of the other scripts here are need prior authorization anyway but when you get type B. I. G. the typical average would be fifty percent of the country and are in Arizona it's down to two percent and released only one insurance company but that is a little bit of a problem and so far they've relented on all the one of the reasons we did senator intent headset argument is we have been the physicians there okay can't deny that all the ability insurance companies that positions to come to the center and give a second opinion your right to have them I was giving away pandas time pretty pretty liberally there but to compensated for that advice that they could be great but there is a a provision in these guidelines to say if someone it's then I'd that done I'll can then be appealed to the centre back since they look at the case see now you've got medical people making those final decisions not an insurance company I think it's a it's the right thing to do because now experts are making the determination of that case and so I think you have extra protection here that to me kind of wraps in a nice package where all the questions are kind of pre answered. Reply one. I'm going to follow up on what you said Mr Ryan and make a couple of broad statements here. You're talking about the. Doctors getting to make the call rather than insurance companies I think that's why this pans pandas group actually got formed is because we had people in Arkansas who had some very serious needs with pans and pandas and they could get no help. So this group came together and. Follow up with insurance companies we we fought to get some recognition of the disease and I think we we've accomplished that but something beyond that that I think it's important to note here is that we as legislators are not here to practice medicine either. We are here to legislate and I think that we've accomplished our task in that we have gotten this ethnologist we've gotten insurance companies for their like okay we we see that this is something we need to address so what we've done is we've now gotten this to where. The experts here in Mr Ryan have gotten guidelines that are not only to be followed in Arkansas but they're falling down at the center of excellence in Arizona there followed at the other key centers in the United States and these are to be followed everywhere in the country by doctors who were dressing pans and pandas. They've got guidelines to operate by Senator Irvin came in. Who comes from a medical family. She's talking about how excited she is to see guidelines because it has everybody operating on the same page. All doctors get to operate with pans and pandas by the same guidelines. We've done our job because now the legislation has gotten the attention we needed and we've got doctors operating with the same guidelines everywhere and I know that Senator hammers can have us talk about adopting these guidelines because that that was our goal was to get to where Arkansas recognize this we get treatment for it and everybody's on the same page so I think this is the culmination of what we started out to accomplish now is there more you bet there's more because I want to take care of Cameron pocket an adult with pans and pandas but. This is a huge accomplishment where we are today to have guidelines for all doctors in the state. And doctors to be able to treat across the state with the ability to consult with their center of excellence in Little Rock so. I think we've we've accomplished what we set out to do Senator. All right. Any other discussion on the thank you any other discussion on the guidelines. Anything from doctor rainy Dr panda you Miss. All right. Doctor of doctor run my make a doctor yet up missed run any any comments from you. Know that the represent ward but did a wonderful job explaining that thank you for doing that K.. Then what I'd like to do in. The reason I want to do this we want to do this is because. If it comes to push or shove deal with the insurance companies or. Having something to reference that we have done is a committee an official capacity would like to have a motion and a second to adopt these guidelines that have been presented so that we can use that in the event there some push back from the insurance companies we can go and say no this is an official action of the committee and it would just enable us to have a stronger position to stand on on top of everything else we've done up till now and so with that being said I'd like to so maybe will make a motion second that we would adopt these guidelines. I would love. Thank. Your second. Second okay all right any discussion to the motion. On favor say aye opposed. Right so be it. I want to get Let's open it up to sandy to give us an update from the clinic and then of got a few final comments will wrap it up the sandy. Senator Sturch. And at the moment. Senator can you hear is also asking now. I can't see the screen is black. Is it there now. Now we can see it and if you would would you email it to Emily please or sharing a. All right and she is fiction to email it out to everybody is that right all right so hi please. So we'll see if I can make it right now. That is not my friend today. Well I can't get on. Okay so are twenty twenty two numbers are as follows we have seen twenty four patients today. Nineteen of the Arkansas patients. I still are outside of Arkansas. And that gives you the locations that they're in. what is now is still primarily through healthcare providers or the internet website or Facebook after the group those all together. I know that we have a few that are coming. Our family friends but they are not represented here yet. our numbers are still quite heavily non cans pandas or pans Candice was not ruled out as demonstrated by the pie chart. Our clinic blame to date with the bar graph at the bottom is pretty much on target as it was last year. Any questions for members. All right that is that has been emailed out To the to the Committee members if you remember the public you want to get a copy that come see Emily afterwards will be glad to get it sent to you if you want C. copulate okay. All right. just some comments from the chair and then recognized represent ward free comments that he has and this is just kind of a. Where are we where we go from here kind of moment. As far as where we are at this point we've gotten it now with the guidelines that if there is a PCP out there who wishes to being gauged in treating the panda panda population or they encounter someone that they think that has pander pandas we have the guidelines that can be protocol to follow there's also the ability that they would be as required by the guidelines to have that working relationship if it gets to the level that I V. I. G. is determined to be ordered and the clinic remains the availability to consult with doctor Ranier Dr panda and to be the fallback in the event there is a a question maybe on the part of the insurance company that they want to have a review and is doctor Ryan expressed while governments have expressed while ago in the in the stage where these guidelines replaced the denial is a relatively small number the Committee in my interpretation and representative working way enter committee can express different for where we started and where we want to get to we are a major milestone having gotten to this point today. And. The issues that we need going forward we'll be to educate the public and to educate providers nurses in schools and other places that might be the initial of contact that so we would have wondering is this something my child has or not and for that reason what I'd like to charge an ask and I know we had some subcommittee set up that's kind of fallen by the wayside like to regroup and what I'd like to ask for is if there are volunteers either from the public or that are on the committee that would be willing to help organize a advocacy group that would now be the champions and take the responsibility to go out and to get information to the public to providers utilizing water is already in place as far as what the Department health pushes out what you a mess pushes out but that we would cast a broad net across the state of raising awareness of panda panda so that if they present to providers there is that awareness out there the. The other purpose that I thank the committee. Could have that would be of value is to miss pockets point and that is between now the time that this committee sunsets which is December of twenty three that we would work continue work with Mr Ryan in which you M. S. adult side and I know they're seen some already but to bring clarity as to the pathway forward for the adult population the way that we've done it for the pediatric population and to me those are the two action items that the committee would have a purpose of continuing it till the Committee sunsets and then as legislators we will look at areas that need to be tweaked I you know cleaned up in language and work on getting that legislation between now and January as we see it's necessary if indeed it is necessary at all and I want to express appreciation to a doctor any doctor panda doctor done to Michael cactus Andy Davis to Matt Gilmore with the department of health because I think that they've all played a vital role in getting us to where we are I think we'd be Ramesh if we did not acknowledge that they have help champion getting us to where we are and is represent once in a while ago are we perfect nope but I don't know anything that is other than Jesus Christ and with his help will continue to push where as this population comes forward we can provide them the resources and the help they need now we have clear to the guidelines pathway forward so they're two points there for the committee one would like to see us develop up advocacy group even to the point of maybe a five oh one see three that we would have something similar to other disease populations where we could of race funds to help promote awareness and the second is a drill down on the adult. Population make sure we get them the same treatment pediatric represent war they thought your add to. I want to add to the you talk about advocacy groups and I am a privilege to have with me today attending our meeting a young man who has been an advocate for hands and pans the pandas and pans the Mr Ryan late them would you mind standing per second Ryan. Right and is a student at lakeside public schools and he has been working on a presentation that I got to go by the lakeside and watch he is accompanied by his mother merry late them you know standards I call your name's going to stand merry of his friend friends and classmates read Baker and McKinley Langley and also their teacher Paul Blissett his teacher has been very helpful in his putting together a presentation on pans and pandas and the so I just want to say thank you for your work and for being here today I hope this is been helpful to come and just hear from some of the experts on pension pandas Mr Ryan is the the guy that is the one who got this all started so you're seeing the man behind it all but anyway I thank you for your work I pray that and hope that you will continue to do more work and but thank you for being here today I just wanted everybody a chance to to meet you and know the work that you've done. I also want to mention Dr Tom Wilson apologize for leaving Dr Thomas in off the list as far as being of one of the champions to help get us to this point mapping a recognized you. I just in relation to your previous comments man I am very very appreciative of all the work that has been done Mr Ryan thank you and thank you everybody that has think this a document the university of Arizona has it was distributed out of showing the Dainese diagnoses and treatment of pants pandas could be a very valuable resource what we would even have to change much as couple letters there with Arizona to be able to get out also the as mentioned before the continuing medical education that the state provides through its Tandberg system program for pans pandas I think would be extremely helpful along with added information with the adult population and how to treat those things which is Marched out in in this document I am familiar with a nonprofit that does have money that's earmarked for the dissemination of information and education statewide in regards to a post auto immune infection and so I'd be happy to help they're not share their anything that we can help get that information out. Well. Much because of an issue not really who I'm going to ask Becky I think for this committee. We have we have achieved our goals objectives at this point but we really need to focus on getting the word out this is October's actually panda pandas where next month I would I would like to ask and you have the right to say no but I would like to ask thank you to consider to head that up that we would look at organizing advocacy group even to the point of an establishment maybe about five one C. three so that we can have a voice outside of this committee that would work with all the entities to make sure that education promotion materials are pushed out there so we keep the awareness you don't have to commit in public but I am asking you public if you would consider taking their own we can work out the details offline. we have representative right with us today representative right yes Sir thank thank you Mr chairman you know I've heard a lot of things is very interesting all of these different angles about this new disease I guess it actually is come up to the last couple years and you can put your hands on just wonder for the general public out there chairman is there anything that we can do to to be able to expose this find out of through their friends through their parents what are the symptoms are. Represent right uh we will get you all that information and then you take it back to your district because I would hope that legislators would be involved in helping push this out and we do have some information will get you to help promoted to push it out to be great. Anything else for any other committee members. Thank you all for your time here today and we appreciate it with that we're joined. Thank.