* Arkansas PANS-PANDAS Advisory Council
Video
Transcript
7 documents
Machine transcript
May contain errors. Verify important quotations against the official video.
About transcript accuracy
- Source
- Whisper
- Model
- ggml-large-v3-turbo.bin RTX5060
- Processing date
- October 7, 2026
Unknown speaker
0:00
Thank you.
Thank you.
Thank you.
Thank you.
Thank you.
Thank you.
Thank you.
Thank you.
Senator Kim Hammer
Unverified
4:00
We will have introductions in just a minute, but there's a couple matters of technicality we need to take care of in order to be proper by standards that we try to live by down here at the legislature. The first matter on the order of business that you'll have in front of you on the agenda is the appointment of the Pan and Pandas Advisory Council member
and acceptance of chair recommendation from the interdisciplinary panel. You have in your packet a list of those that are recognized, either by appointment of the Speaker of the House or the pro tem of the Senate by the Governor or as designated by the professional agencies that are referenced in the legislation. there is one position that is opened it is the first open position you see on the list down there for medical professional by pana pandas advisory council we'll need to take care of that
appointment once we get officially recognized as a advisory council and then there are three that we're still waiting for those entities to give us the names of those that are going to be attending the meetings in the future. We have Maurice Rigsby who is at the table and for the record Maurice would you introduce yourself with your name and title please. Thank you.
Speaker 3
5:29
Maurice Rigsby Vice Chancellor Institutional Relations UAMS. All right
Senator Kim Hammer
Unverified
5:38
in a little bit the interdisciplinary panel which is actually organized under the direction of UAMS work in conjunction with Children's Hospital is to make a recommendation to this advisory council as to who they would like to see chair this advisory council. And I think, Maurice, you have a
Speaker 3
6:00
recommendation that you'd like to present? Yes, Senator. On behalf of Dr. Rick Smith and the Interdisciplinary Committee panel, he would like to recommend that you and Senator
hammer and representative left les warren serve as co-chairs of the advisory council okay and with
Senator Kim Hammer
Unverified
6:19
regards to the vice chairs did you have a recommendation on
Speaker 3
6:24
that as well as senator irving and representative cloud will serve as vice chairs okay and so
Senator Kim Hammer
Unverified
6:32
members you hear the recommendation from the interdisciplinary panel of ums and children's as to who will chair this committee and so what we need to do is i'd like to get a motion from a member of the committee to
recognize the names that are on the advisory council as pointed by their appropriate people and then also in that motion include accepting the recommendation of the interdisciplinary panel as to the chairs and the vice chairs of the committee do i hear a motion or can i get motion all right get a motion from representative joe cloud i need to get a second from a member second got a second from mr vincent with the pharmacy association so we'll open it up for discussion is there any discussion from the advisory council members all in favor would
you say aye aye any opposed okay so we have that matter done i know maurice is on a very tight schedule today um we're going to have discussion a little bit about the interdisciplinary panel but i think the two doctors that are here are going to be able to handle that we're going to wrap items g and f into one is there anything you want to share maurice
Speaker 3
7:45
before you have to get out of here no um senator i just want to thank you and all the members of the general assembly for your um leadership and listening to the parents and the advocates and all the the patients out
So this is important for UMS and Children's Hospital and we look forward to working collaboratively with you. Dr. Smith will be leading the interdisciplinary panel and so we look forward to having him appear at your next meeting. He is out of town today. He has submitted a report to outline the work with the Pace Foundation foundation and all the efforts to get the clinic up and running at children's so I've submitted
that information for your review as well but we look forward to being a resource for all of you so but thank you for all the members
Senator Kim Hammer
Unverified
8:41
of the council for your service all right thank you and I'm going
Representative Les Warren
Unverified
8:47
to recognize representative Warren to a share comment at this time Marcus I just want to say thank you to UAMS. Working with you guys has been wonderful. I'm looking forward to hearing from the two doctors here, but please let everyone know how grateful we are. Look forward to working with
Dr. Smith and the rest of the group. Please express our gratitude to Dr. Patterson, but thank you I know this is your first day back after being off so thanks for being here but we're looking forward to it no thank you and happy
Speaker 3
9:22
new year to everyone and I think we have great doctors that today Dr. Panda and Dr. Rainey that will give testimony and that I think will be insightful and helpful and help chart the course for where we're trying to go as a state so thank
Senator Kim Hammer
Unverified
9:38
you for the opportunity to to be here today and maurice let me uh add on one thing that um so the advisory council knows that when we have our meeting next month dr smith has arranged um with regards to the open house would you talk about that
Speaker 19
9:55
for just a second uh yes he's looking at uh he's working with it was children's to find
Speaker 3
10:00
an opportunity for for an open house so we're hopefully by next week we'll have um a firm date on the the open house and and he's he's working them to schedule that so and also during that time we will have the the hopefully have the
ryan's back to have another meeting but but they're seeing and the doctors can speak to this directly but i think they're they're seeing patients already but as far as a a formal open that's what dr smith is working on late february or early march time frame and so he's just trying to confirm that on the calendar at children's but they can speak to the the clinical operations and what's currently going on right now good and members we should know that date as soon as we
Senator Kim Hammer
Unverified
10:44
know that date maurice will communicate with carol our community uh committee analysis and uh analysts sorry and uh she'll make sure to get that out to you so you can schedule well in advance to to be there and we'll we're actually intending to uh talk to senator ervin who could not be here today. Her son, his car broke down. She's trying to get him on the road back to college, so I think we can all appreciate that, but I did talk with her about a joint committee meeting between the House and Senate Public Health and this advisory council when they come back, so hopefully
that the Ryans are able to be here, that we have them come speak to the joint committees, and we can all have an opportunity to learn some knowledge from them, and give you all a firsthand chance to talk to them about what they're doing out there
Representative Les Warren
Unverified
11:29
so all right maurice i i appreciate you i was not meaning to slight children so dr wheeler we equally appreciate children so i just knew you were about to leave
Senator Kim Hammer
Unverified
11:38
so all right any any members of the committee have any questions for uh maurice
at this time all right thanks for being here maurice all right members um we're going to take a moment to do some introductory comments from each of the members so everybody can kind of be acquainted with each other what we'll do is i'm going to start over here all the way to my left because representative slap who is not a member of this commission but he is here today which i think speaks volumes that he's here so i'm going to start all the way to my left and we're going to gravitate to my right which will put dr cloud your second in the hopper to introduce yourself
tell a little bit about yourself each one of you what your expertise or interest is in being on this advisory council members uh the way you operate is there's a that black button in front of you just push it that light should become green wait until it comes your turn because if two mics are on at one time it doesn't work real well so we'll
Speaker 6
12:40
we'll start off by by doing that okay so representative slate would you introduce yourself please representative key slate district 83 um i've had uh using uams and and children's in the past has always got me interested in
anything i could do to help but i'm really curious of what's going on here and that and following dr cloud around i just wound
Representative Joe Cloud
Unverified
13:06
up here dr cloud uh representative joe cloud uh uams class of 82 dr wheeler actually worked me over a time or two in during clinicals i believe i remember that i bet he doesn't though i appreciate the appointment to this board and of course health care is near and dear to my heart and i look forward to what we can learn and what we can do thank you
Speaker 25
13:33
chantelle all britain with the arkansas insurance department Natalie
Speaker 28
13:40
Bradford, physician assistant, and I treat these kids in Benton, Arkansas. Is it
Speaker 30
13:51
on? Okay. I'm Paisley Butler, and I am a counselor in Benton Middle School, and I have worked with a lot of kids who have had PANS and PANDAS.
Speaker 31
14:05
Ashley Collins. I am a school teacher, and I have, I guess, four years experience with working with kids with Pans Pandas. Kalia Duke. I'm a
Speaker 32
14:17
school nurse. I've been a nurse for almost nine years, and I'm just excited to be able to spread awareness throughout the schools and let other nurses know what to be watching for, what the teachers to be watching for, so I'm just excited. i am kathy puckett
Speaker 34
14:36
i'm a mother to a 23 year old son that has pans and we've been on this
Speaker 36
14:41
battle for about eight years now i am deborah rice i am also a parent of a child who has
Speaker 37
14:51
just turned 11 with pans pandas that started at
Speaker 40
15:03
of the board of nursing john vinson the ceo of the arkansas pharmacist association and i am also a pharmacist and also a
Speaker 43
15:15
uams grad i'm gary wheeler i'm a pediatrician with a background in infectious disease and immunology
and saw a lot of these patients in my clinic i currently am serving as the designee of our state Secretary of Health, Dr. Smith, has appointed me
Representative Les Warren
Unverified
15:35
to sit on this committee. I'm Representative Les Warren from Hot Springs, and my connection is the Puckett family. I had their son in youth group, and saw the vibrant young man
who did a tailspin down, and then the benefit of the ibig and then being told he can no longer get that and another tailspin so i've watched a family go to hell and back so i am so thankful for this day and
Senator Kim Hammer
Unverified
16:13
i'm senator kim hammer i represent district 33 which is sling county west plasso county west little rock and um and so we're looking forward to getting down to work members let me uh give
give you a little bit of expectation so you can kind of know the flow of things this advisory council is actually only allowed by law to operate to the end of this year and if you'll just give me just a minute or two to kind of verbalize a couple things so it kind of hopefully solidifies the direction that this advisory council is going to go when we started this journey two three years ago um maybe a couple years ago but anyway whenever it started uh one of the things we recognized was that was of need to put attention on the panda pandas uh disease that exists here
in the state and as this thing solidified and we began to craft the legislation and work on it uh it became apparent that there were more and more people affected by it in the state and so you are the result or part of the result of that ongoing effort uh and you are in the position you're in because you bring a level of expertise as it relates to pan and pandas and the goal and the objectives we will go over in just a minute because we're going to we're going to do a high level view of what the legislation is intended to achieve and what we are asking is
that over the next year that we help achieve those objectives so when we get to the end of this year we will have some substantive things that we can look at to know that we made a real difference as far as addressing the needs of PAN and PANDAS. In the mixture of all that, and the chair as well as the co-chair, and I think I can speak on both the other members of the legislative branch that are here, we all have a very high appreciation for how God works in mysterious ways. And one of the things that happened as a result of this was we were introduced to the Ryans.
And as a result of that, we were blessed to be partnered with UAMS and Children's. And we use those terms interchangeably because it is a partnership between UAMS and Children's, and we appreciate that working relationship that the Ryans were introduced and actually came to town last month. Some of you had a chance to meet them. Hopefully next month everybody will have a chance to meet them. But because of what they have already gained in the way of plowing ground, we don't have to reinvent the wheel,
but we can partnership with them. and I think that's going to help expedite what we're here to help achieve and so we're very thankful that we were able to meet them and as a result of the Pace Foundation have accessed some things. There are some things we're going to ask you as advisory council for that we will take up the chain of command through the legislative branch and through the administrative branch and we're not going to get everything achieved in this meeting but we will get it all achieved by
time our our time frame is is complete okay so let's let's be patient let's just put our heads down and let's plow with that being said one of the things we need to do is the first order of business is there if you look at your handout of the members of this advisory council there is an open position and it's the medical professional by the pan and pandas advisory council we have the latitude to appoint a representative to fill that slot that position
will also work in conjunction with the interdisciplinary team over at uams and children's i would like to make a recommendation and we'll open up the floor for nominations as to who should fill that slot one thing i want to say the reason we're having this meeting today is because we have parents on this committee and we have professionals from the school world okay and we also have individuals that are taking advantage of a little time off before we get back in the swing of things Monday so when we meet next time we're going to do it in conjunction with
other legislative meetings so that more legislators can be involved they'll be in town it won't be Christmas first of the year break and so we will have that one but out of respect for the teachers and the counselors and other people that had a little latitude of time that they're going to lose start Monday when school comes back. That's why we're having this first organizational meeting today. The chair would like to recommend to fill that slot Matt Brumley. Matt Brumley is in the audience. He's been a pioneer advocate for this since day one. He does bring a level of awareness
of the issue that I think would make him a good candidate. So the chair would like to submit his name to fill the slot for the medical professional by the pan and pandas advisory council and the chair will open it up to
any other recommendations by any other committee members would dr wheeler yeah would would the chair uh
Speaker 51
21:15
tell us a little bit more about dr brimley or perhaps he could introduce himself a little bit more i don't think he bears the title doctor but
Senator Kim Hammer
Unverified
21:25
but let me ask him to come to the counter and to the table. How about Dr. Wheeler? And we'll let him share about himself. If you would, Matt, your name,
Matt Brumley
Unverified
21:37
title for the record, please. My name is Matt Brumley. I'm the director of the Saline Health Foundation. It's Saline Memorial Hospital is where I office. Dr. Wheeler, would you like to ask him some questions?
I just, your medical professional background. Yes, I obtained a license through Allied Health and as a paramedic and director of emergency ambulance service and interim in the emergency department at Saline Memorial Hospital for a number of years. My focus now is really Saline Health Foundation and while I have a card that says I'm a paramedic, don't get hurt in front of me.
bit rusty. If I can expand just a little bit on some comments that Senator Hammer mentioned before I came up here. I found out about this three years ago, December 24th, where a young boy in Saline County who had struggled with something nobody really knew what showed symptoms of something that was caused by some brain inflammation later actually mid
December he was diagnosed with this I hope we soon call it post-infectious autoimmune encephalitis and he was told that he needs to get to the front of the line because there's just not many outlets for treatment his date was set for mid-January this was mid-December and on Christmas Eve that year he had a a flair he was very impulsive and he took his own life from that point in time I said we've got to figure out what this is and you know with awareness comes responsibility and I think I invited
Senator Hammer to a conversation it'll be three years ago mid-January and since such time I have seen this group come together and I've seen legislators within our state and families be able to seek out treatment. Not where we want to be but certainly not where we were and so from that whatever position or whatever posture I can hold to be helpful that the next person in line gets the treatment that they deserve is what I want to do. Thank you.
Senator Kim Hammer
Unverified
24:11
While you set the table, do any other members have any other questions they'd like to ask? Thank you, Matt. Are there any other names that the committee would like to submit for consideration? Let me say this comment. As with this committee meeting, I would expect the same of the interdisciplinary committee meeting although you got to be careful otherwise it's like opening up the choice of the color of
the carpet at the church business meeting it can unravel on you real quick but I would hope and I would express and I hope Representative Warren would join with me that anytime there is meaningful dialogue with the interdisciplinary panel at UAMS and Children's that part of the part of the duty would be to make sure there's open communication between this advisory council and the interdisciplinary team to make sure we put out effective and accurate information. That being said, any member
of the interdisciplinary team is always welcome to come to our meetings and I would hope vice versa that the advisory council would also be welcome to go to their meetings. However, we need to make sure there is a conduit between the two to make sure that that communication is effective so that we work together in unison and not cross-purposed with each other. So I would just, that would be part of the expectation of this position. So, Representative Warren. I would just like to say
Representative Les Warren
Unverified
25:52
that in the process when Senator Hammer was presenting this legislation on the Senate end and I presented on the House end, there were two people, or three roughly, that I got my information from. And this was a pretty steep learning curve to figure out all that was involved with this. But Matt Brumley was one of the key people that helped me understand and be able to make a good presentation to the House of Representatives. The others were Senator
hammer and uh kathy puckett so but he is key in this legislation being passed oh
Senator Kim Hammer
Unverified
26:41
sorry any other questions comments or recommendations yes
Speaker 34
26:51
ma'am go ahead sorry speaking to voice putting matt brumley on the board here matt was very instrumental in
helping my son cameron get further treatment here in the state of arkansas he was the one that stepped forward after we lost Max on Christmas Eve 2016 and he knew that Cameron and Max were fighting alongside each other with these disorders and Matt stepped up and he was able to help me get my son further treatment here in the state of Arkansas. So I highly recommend putting Matt on the board. Any other members? with
Senator Kim Hammer
Unverified
27:31
no other recommendations of anybody to fill this position
uh i take a motion to accept matt brumley onto the advisory council got a motion by sue tedford second second got a second by natalie bradford any discussion all favor say aye opposed all right matt you want to come up here and grab you a seat somewhere all right next members we need to adopt the rules of procedure which is your exhibit d
these are just some basic guidelines that kind of keep us between the ditches and it talks about the duties of this committee parliamentary procedure as far as quorum and when we take action how many members have to be present in the event we get in a situation where somebody disagrees with the chair's ruling and representative warren are going to swap off chairing by the way so this month i'll do it next month he'll do it back and forth and in our absence our vice chairs will take care of chairing the committee but in the event that somebody
disagrees with the ruling of the
chair with regard to a vote you can call for a roll call just fyi once you call
for the roll call your name goes on the official record if you do it a voice vote we don't identify so just fyi motions receive a second public comment there will be times in fact i would encourage you to start putting out the word that once we release the date for next month's meeting it would be a good time for public to show up because if we are
successful in getting the rinds here i think we communicate a strong message to them because they're investing in multiple ways into our efforts here it would be a good time to have a good public showing of parents who are struggling with this or children that are struggling with this and members of the public are allowed to sign up and to give a comment at the appropriate time and then carol which carol i skipped by you would you introduce yourself for the benefit of the committee please because i think some of y'all been receiving communication from her carol
Speaker 71
29:51
stapleton i'm your committee analyst and so in
Senator Kim Hammer
Unverified
29:54
the legislation uh one of the things we were able to do was to get staff support and so all the staff sitting over side if y'all don't mind just stand up and call out your name so they can put a name y'all look at me like don't
do that to me but y'all y'all stand up and shout out your name please
And she's about one week old, so y'all be kind to her, okay? And Alex is the one. She is the staff attorney that works for the Bureau that actually helped craft the legislation we had before us. Yes, ma'am. Okay. Matthew? Very good. So these are our support staff provided by the Bureau to help keep us between the ditch, and as this moves forward, if we want to make recommendations to pass on to the administrative branch
or in forms of advanced legislation, they're going to help get it done. All right, so what I need is a motion to accept the rules and procedures as presented. Can I get a motion from a member? Second? Second. All right, any discussion or do you have any questions about the rules and procedures? Any questions? unclear about anything all in favor say aye opposed anybody want to roll call it okay moving on
all right next if you would we have put together for you an explanation of act 878 it's a hundred thousand foot view it's a six page bill this is kind of the skeleton if you would to add the meat you can read the bill you've got a copy of the bill in your packet too so if you want to lay these two things side by side uh you can kind of follow along but this is make sure we're all on the same page as understanding why we're here i'm going to ask a member of staff to come to the
table that can explain a couple terminologies there in the bill for the benefit of lay people that aren't used to working with legislation the way it's written and if you would alex your name I'm entitled for the
Speaker 76
32:19
record, please. I'm Alex Stevens. I'm an attorney with the
Senator Kim Hammer
Unverified
32:23
Bureau of Legislative Research. Okay, members, you'll notice if you want to look at the bill on page one where it says section one, it says Arkansas Code, Title 23, Chapter 79.
And then if you look over at page four, line 14, you'll see a phrase, the bill's divided into two sections you'll see a phrase there on page four line 14 says temporary language do not codify the chairs thought it might be good just for an explanation of what these what it means or what it refers to just so
we have some familiarity so alex if you would please
Speaker 76
32:57
yes sir before i start i do have to read an introduction because um we're providing testimony my name is
alex stevens and i'm a legislative attorney with the bureau of legislative research i've been asked by the sponsor of the legislation to explain certain aspects of the act to this committee however the bureau of legislative research is non-partisan and impartial as an employee of the bureau i cannot advocate for or against this act or the issues presented by it okay on page one the arkansas code when you're codifying it uh we were just divided into titles chapters sub chapters sub chapters and sections we have a three unit numbering system so for this one we
have it in title 23 which is actually public utilities and regulated industries we further divide that into chapter 79 which is insurance policies generally and since we're adding a new sub chapter 18 that's where that comes in so it's actually 2379 1801 on for the temporary language since legislation is generally a part of a permanent and general nature since your expires in december of 2020 this makes it kind of temporary so that's why we have that language and we don't codify it in actual Arkansas code.
Senator Kim Hammer
Unverified
34:06
Okay. Any questions from members? Remember, she can't give legal opinion or take her positions, but any questions about those two terminologies? All right. Thank you, Alex. Thank you. All right, so here we go. I'm not going to insult your intelligence by reading verbatim what the explanation of Act 878 is, but you can use the guideline. What in Section 1 it does, it assigns a definition of the medical condition that is defined in law and then that definition
is expanded on page one beginning line 33 continuing through page two seven so when we're having this discussion we're not trying to change diagnosis of cancer any of that other kind of stuff we're limited to our conversations to just this one particular diagnosis secondly identifies the challenge that the legislation is intended to address which is that not all insurance companies pay for treatment found beginning on page 2 line 8 through page 2 line 17 it establishes the interdisciplinary panel that is shall be
established and that's on line page 2 lines 19 through page 3 and 18 and it defines the working relationship with UAMS Children's Hospital and the National Institute of Mental Health I'd like to just it's not mentioned in there but since this legislation was passed and once the Pace Foundation found out about it, they became interested in it. I would say that as a result of all that, we are now getting a clinic established over at Children's in cooperation with UMS. So while they are not
mentioned in the legislation, they came into the state as a result of the work of this council members and all those that played a part in it. Charges that UMS will establish in an interdisciplinary panel, that should include, but it's not limited to three members, as identified on page 2, 32 through 3, 8, and I think the physicians that are in the room today are going to speak more to that in a minute. Interdisciplinary panel is charged with creating the protocol for the treatment of diagnosis framework for the coverage of PANAPANDAS
for a purpose of assigning international classified of diseases code. That's going to allow the pathway for working with the insurance companies for reimbursement. One thing I'd like to note also is that with the involvement of the Pace Foundation, they're going to help us keep from reinventing the wheel. They're going to fast forward the process because they've brought their expertise into the discussion. Then the next point, once the interdisciplinary panel has determined the appropriate diagnosis criteria for the protocol,
the recommendations are to be submitted to the legislative and administrative branch for the purpose of required legislation, if necessary, to implement. and then establishes the exceptions of the interdisciplinary panel and that's on page three line 32 through four and it identifies the three points under section two which applies primarily to the people in the room today establishes this advisory council we've got the members approved it's a list of specific criteria assigned to the advisory council term expires december 2020
Let me just editorialize on this one for a second. This council expires on December 20th, December 2020 this year. That doesn't mean that there couldn't be a recommendation that comes out of this council that would allow us to continue a pathway forward, whether that is to create legislation for that. This is just the chair's thought or perhaps maybe establish a conjunction of a foundation that could be the the means to make sure that this continues into the future
chairs and vice chairs recommended we handled that already and the job description of the advisory council are found on page 5 29 through 6 18 and there's four primary purposes to determine methods of increasing awareness to work with the interdisciplinary panel determine acquire critical information that will be beneficial in raising awareness participate in the recommendations concerning standard practice guidelines for the diagnosis and treatment and provide outreach through the establishment of a volunteer network.
So those are the four guiding principles of why we're here, and that's a 100,000-foot view of the six-page piece of legislation. So I'll just ask at this time if there's any questions from the advisory council that you have about the legislation, anything you don't understand or questions you want to raise about it. Any questions from anybody? okay we'll reserve opportunity for you to come back as you think about it and digest it because there may be some questions that will come up because next what i'd like to do is have our
two physicians he is affectionately referred to for simplicity as dr panda if you would come to the table and then also dr rainey if you would please come to the table while they're coming
Representative Les Warren
Unverified
39:17
i'm going to throw in a comment here when we met with the ryan's and i'm not sure uh senator you might be able to say how long they have been working on this out in arizona but they've met with these two doctors and in our meeting with them we had a meeting
in December but they said you have two exceptional doctors here and they said it not just once but I think three times just in a short meeting so I think I think we're very fortunate to have the doctors that we have working here in Arkansas on behalf of our PANS and PANDAS issue so I just and I think that's so incredible that we have an organization that is so far ahead of us that's willing to step in
and help us and for them to be so pleased with our doctors that's great so we're glad you're here what
Senator Kim Hammer
Unverified
40:21
i'd like to ask you to do and also dr smith would be here however he's in st louis helping his daughter move i understand uh so family first but he did provide a one-page summary that's been passed out to you that kind of gives us an update of where they are in the process and Dr. Smith will be here at next month's meeting when hopefully we'll have the rinds here and so just you can be
reading over that but at this time what I'd like to do is ask you all to introduce yourselves for the record and then I'm going to open up the mic for you just to bring us up to speed with where we are to date with regards to the clinic and the progress that's being made in addressing this and and then, members, you can write down your questions, and we'll open up the mics for questions when they get done. So if you all would,
Speaker 90
41:11
please name and title for the record. I'm Veronica Rainey.
Speaker 91
41:13
I'm a psychiatrist. I specialize in child and adolescent psychiatry.
I'm the medical director at the UAMS Child Study Center that's located on the children's campus. And I've been working with Dr. Vera Pandian to try to get the childhood post-infectious autoimmune encephalopathy clinic up and going. So you could see my
Speaker 93
41:35
last name there. It's long. It's easy. It's not that
Speaker 94
41:39
bad. It's Vera Pandian, but I go be Panda. And I'm a child neurologist with a special training in neuromuscular medicine,
meaning I see kids with muscular dystrophies and stuff. So I do a lot of multidisciplinary clinics. And I'm also the medical director of the headache clinic, and I'll be co-directing this CPA clinic at Children's. All right.
Senator Kim Hammer
Unverified
42:01
So tell us about, start off by telling us about the clinic, where you are right now. Have you started seeing patients? I'd kind of like to know the criteria for selection of the patients you see and just kind of give us an education there,
Speaker 97
42:14
if you would, please. Sure. Let me speak first and then I'll let Veronica join.
Speaker 94
42:20
So if you talk to the pediatricians or a lot of doctors out there, when you say pandas, they don't believe it, period. They just don't even want to hear that. That's just, you know, that's just been the way because we are not, when we do our training, it's not being brought up in our training so much. And it's just because of lack of awareness among the people, among the pediatricians, in the schools, in the training also. And I have seen a lot of patients with, we call pandas pants,
but we prefer to use this term CPA, chronic childhood post-infectious autoimmune encephalopathy, meaning some inflammation in the brain following some type of infection. It was first described as PANDAS because when they described these patients first, a lot of them had these manifestations of psychiatric problems, behavioral problems, acute onset, meaning they do completely fine. Then all of a sudden, they started showing these behavioral problems. right the first time and they described a lot of them had some sort of strep
infection so that's why it called us pandas but then later on we started learning that it's not just strep infection it could be followed by any type of infection so that's why we then they changed the term called pans took out the streptococcal infection
Speaker 95
43:38
from their spans now we use it just post infectious autoimmune encephalopathy meaning inflammation in the brain after some sort of infection. So I
Speaker 94
43:48
think I volunteer to do this clinic one because you know I've seen these patients and I want to help these patients and I believe this thing exists and I want to
and I know there's not a lot of providers out there that does this consistently and provide them good care for these kiddos. That's that's the main reason I chose and then obviously Dr. Smith and Dr. Sharp chose me because I've done a lot of multidisciplinary clinics I have experience with the multidisciplinary clinics meaning having more providers in one clinic like psychiatrists psychologists other providers who can all see these kiddos at one one visit then that's when we were um that's when i got introduced to veronica and then we decided to do this clinic
and um then we came to know about pace foundation which um which is the ryan's paul ryan and patricia ryan they have been doing this for at least last five more than five years actually because their grandson was affected with this and they were not treated properly initially. That's how they ended up starting this foundation. And they wanted to streamline this process. They wanted to help kids with PANs, PANDAS all over the country. And they started these sisterhood clinics, what they call.
The first one was established in Tucson, Arizona, University of Arizona in Tucson. And the key is standard of care. have a protocol to go through the when someone presents to you with hey my kid has pandas when you look at this medical record they come with you know you probably know they come with dozens and tons and tons of medical records so to streamline that process to actually come up with a protocol to diagnose them so they could use that protocol and the criteria when we present to entrance companies to cover for treatment so they had already been doing that and they had
established four centers so far in the country and if when we do this when we start doing this ours will be the fifth one and they're planning on expanding it to two more in the two or three more in the east coast and then they will stop and the goal is to have a standard of care standard of practice all around the country for diagnosis and treatment for these kids and also to create awareness among the pediatricians and other doctors in the community in the country as far where we stand at children's um we already started seeing um patients but it's not it's
called we call it soft opening it's not been officially announced or opened yet but we we had seen one or two patients so far since november um we do get a lot of referrals now i think the word is out that we are starting the clinic and we do get few referrals which we are planning to have a actual opening
Speaker 97
46:26
sometime um i think next month or hopefully in march early march and then we'll
Speaker 91
46:36
start doing the clinic. Do you have anything to add? What I would add is just with most autoimmune diseases,
when they are first being explored, discovered, scientific evidence found about them, it's often written off because with autoimmune, it's kind of hard to come up with good tests and have, like, a system of how it's diagnosed. And so it's often discounted as being all just in their mind. And so I feel like that is something I've encountered in terms of being in psychiatry
of when they've done everything that they can in terms of trying to see what is the medical issues and then send into psychiatry. And so seeing some of the evidence that there is a physical cause, it had a start that was very different than what the typical psychiatric issues are in terms of just looking at the history of it. So I feel like this is a really important disease to
Speaker 90
47:43
make sure that we raise awareness of
and we have a standardized approach to.
Senator Kim Hammer
Unverified
47:52
I've got a list of questions so let me defer to the committee members first do the
Representative Joe Cloud
Unverified
48:01
committee members have any questions Dr. Cloud thank you Mr. Chair Dr. Penn I was intrigued by your initial comment that the some of the pediatricians basically don't believe in this syndrome is am I correct and I think so yes Okay. So with the establishment of this clinic, obviously you're going to need referrals in.
Is that culture changing, or are there plans to change that culture? Yes, that's a plan,
Speaker 93
48:28
to change the culture. I think part of it is rather than, yes, they don't believe, and
Speaker 94
48:33
then they don't, if they try to send some patients, then obviously they can't get a hold, they can't refer the patients to anywhere, because a lot of the physicians, specialists would say, we don't treat pandas. I don't know, go find somebody who treats pandas. So,
Speaker 95
48:47
yes, the plans would be to educate the pediatricians and the local community providers also on this condition.
Representative Les Warren
Unverified
48:56
None, Dr. Cloud. Representative Warren. I'm going to jump in because that's one of this committee's charges is that we help with the dissemination of information out to doctors throughout the state and spread the news about PANS and PANDAS, create an awareness that is not there. Like you're saying, not everybody has the knowledge.
Some pediatricians still don't think that this is for real. So I think by having UAMS and children involved and doctors like this are going to have some credibility to what we're trying to do. So that's going to be one of the key elements of this committee is helping get that information out there.
Speaker 49
50:01
Dr. Warren. Thank you, Mr. Chairman. Wheeler, sorry. There
Speaker 43
50:09
were a couple of things that I wanted to respond to, Dr. Cloud, about. I think one of my other jobs as I serve as the president of the American Academy of Pediatrics chapter in Arkansas, we've actually been going around and visiting all the offices. And the number one issue they raise is that whereas the way they practiced medicine 10, 20 years ago
was largely focused on infectious diseases that the huge majority of their work now is dealing with behavioral issues, and they do feel actually unprepared, and this is really more for the psychiatry side of this, and that they don't have resources to deal with the large number of children they have with behavioral disorders. I think they're actually pretty aware and able to recognize obsessive-compulsive disorder, tick disorders, et cetera, which are the, I guess,
the focal points that these two syndromes have been built around. But they do not have resources, so I think having a new clinic that can be well-identified will probably, there's likely to be a pent-up load of patients that are going to get referred to. And that leads actually to the biggest issue. The title of this act and subtitle
is really about insurance coverage. I think there are many of us that believe that these disorders exist and the issues are really built around you know the treatment issues and so I think there are there are a lot of physicians out there because the literature is confusing on this about what treatments actually work and so having a network of academic facilities that are trying to standardize this I think would be it's going to be a tremendous advance and is likely to pave the way so that third-party payers
will actually pay for this the thing that i chuckled about in the in the bill is uh number three on page two that some insurance companies are currently providing disparate insurance coverage uh well let me let me tell a secret to all of you who don't work in building offices and pediatric offices that's true for every single disease every vaccination for everything so that's not a unique thing and i guess this is by way of background for the chair I wanted to make sure I understood what the jurisdiction might be for this committee
and for the legislature itself in trying to alter the way any disease is paid for by insurance companies in Arkansas. So that's sort of a general question I have back around jurisdiction. let me repeat your question back to you make sure i understand it's what i
Senator Kim Hammer
Unverified
53:14
think you're asking me do we as a committee have any authority outside of dealing with pan and pandas when it comes to
uh insurance reimbursement for for this it's really a more generic
Speaker 43
53:28
question does does any committee or does the legislature itself can it set the guidelines that require payment for any types of, regardless of what the disease would be? Or is that the jurisdiction of the Insurance Commission? That's a general question. As a layperson and not a legislature, that was my question. Sure. So here's where I'll answer
Senator Kim Hammer
Unverified
53:52
it, and then I'm going to ask Chantel to weigh
in if she has comments, being that she's with the Insurance Commissioner's Office. The piece of legislation was written with the intent that once the billing code is established and part of the sticking point maybe dr cloud or you know natalie or you dr wheeler can weigh in on what i'm about to say but part of the sticking point is that there's not really been a clear code under which this could be billed for because there's been controversy within the medical field as to how do you accurately go
about diagnosing it therefore the insurance companies didn't feel that they needed to pay for it because medical community couldn't get together on a clear pathway forward so part of what the bill is structured to do is that once the interdisciplinary team comes up and says here it is here's the code and i'll struggle to find it quickly but it is written in there in section two somewhere i think that it says that the insurance companies shall pay for the treatment was one of the things that we got placed in there but part of the challenge is and that's what i
think makes the weight of this advisory council so heavy working with the interdisciplinary panel at UAMS and Children's is we've got to we've got to expedite getting that code and the diagnosis process figured out which I think that's the act of God that the Pace Foundation got involved because they've already kind of got some of the legwork done for us so I'm gonna Chantel am I do you have anything to
weigh in on that or I'm going to defer back to the doctors either way or both?
Speaker 109
55:31
Sure. I think also something to look at is would this be made a mandated benefit
Speaker 110
55:36
which would make the companies pay for this as well. And that is something that can be done through the legal department at the insurance department, I think, to be able to speak with you about how that can be done. and and so let's
Senator Kim Hammer
Unverified
56:00
just have an open mic dialogue but what the insurance commissioner needs is clear
direction clearly identifiable code and agreement from the medical profession as far as the method of diagnosing yes he would he
Speaker 113
56:15
would need to have discussions about those types of things. Dr.
Speaker 43
56:22
Wheeler. Dr. Wheeler. That's very helpful. I appreciate that. I guess the second question is about getting a code. ICD-10 codes and that kind of thing are set by sort of an
international group. I didn't know what our ability to impact that was. The foundation and nationally might be able to do that. But again, I'm eager to be educated about how that process might change. John,
Speaker 116
56:54
Vincent. Thank you, Mr. Chair. I just had a follow-up question with
Speaker 40
56:58
regards to the interdisciplinary panel at UAMS, which we heard a little bit about today. Who serves on that? How will they interact with us? You know, with regards to our charge
to make recommendations concerning standard practice guidelines for diagnosis and treatment of PANS and PANDAS, which is number three, you know, of our charges? Will that come from the expertise of this council, or will the interdisciplinary team at UAMS make those recommendations to us and then we, I guess, vote on that? Or how do you anticipate or see this kind of playing out operationally? Sure. Do you
Senator Kim Hammer
Unverified
57:34
all want to speak about the interdisciplinary panel? Sure.
Speaker 94
57:39
I think as far as the interdisciplinary panel, Dr. Smith is a psychiatrist, he's leading us, and I'm the
Speaker 95
57:45
neurologist, and Dr. Rani, Veronica Rani is a psychiatrist, and we'll have a psychologist in the clinic as
Speaker 120
57:51
well, and the panel as well. So you all three are the interdisciplinary
Senator Kim Hammer
Unverified
57:58
team then? Yep. and as far as how they interact that that was one of the purposes we will have you know a representative that's going to be working with them that will you know when y'all have meetings
i would expect that he would be there and can be a direct channel in the event y'all can't be at our meetings then we'll have that that dialogue and so in answer your question john it would be essential for that open line of communication but honestly we're going to be leaning real heavy on you guys to to get the medical side worked out so we can have the code to be able to give to the insurance commissioner so that we can get because if you look at page four page four at the
top six lines once the interdisciplinary team determines the diagnosis criteria for purpose of insurance coverage, all insurance companies and health benefit plans are licensed in the state shall provide coverage for the treatment of PAN and PANDAS diagnosed according to the established diagnosis criteria recommended by the interdisciplinary team. I think that's the stick in the bill. I think like you
Speaker 121
59:10
mentioned, Pace Foundation already did the work and we have everything in place. At least we could just use the
Speaker 94
59:17
same thing from there. They've been using it
And they have been successful with that in the other centers in other states. And I think when we talk about the insurance coverage, we are actually talking mainly focusing on the IVIG
Speaker 95
59:30
part of it because the rest of the treatment is pretty standard. It's pretty simple using antibiotics or anti-inflammatory stuff like ibuprofen and naproxen. So that's pretty standard. I'm going
Senator Kim Hammer
Unverified
59:41
to recognize Representative Warner with a question, then I'll come back to you. Dr.
Representative Les Warren
Unverified
59:47
Rainey. i will just tell you that when i was presenting on the house floor that was one of my big issues
because cameron puckett was the individual that i knew that had gone through that when he got the ivig treatment he was able to come back to the old cameron and he went back to I mean he went to college for the first time and Kathy can correct me if I'm wrong here but had a year and a half of normal life and was the old Cameron that we knew and then they were told he
can't have that anymore insurance is not going to cover that so part of my fight was that we know this treatment works for Cameron I want it to be made where insurance has to cover this so and I know that a couple of other times dr. Wheeler you had it asked I served on my first term I served on the insurance committee and we had a couple of issues they were cancer related but we passed legislation that
required insurance companies to cover specific cancer treatments. So legislatively, I don't know if that ended up going through the Senate, but we did have some legislation that came through on that. Members, let me just housekeeping
Senator Kim Hammer
Unverified
1:01:18
rule here. If you want to share in a comment or discussion, raise your hand because that's part
of what Carol does is she scans y'all and if you raise your hand, she'll get your name on the list so i take you in the order so you think maybe a head nod tells me
that you want that could be you're not trying to keep from falling asleep too up here so all right so let's do this i'm gonna recognize uh dr rainey then i'm gonna go to matt brumley dr rainey you
Speaker 90
1:01:47
were going to share something a minute ago he already shared just about the the expense of ivig and the importance of the insurance coverage for that okay
Matt Brumley
Unverified
1:01:58
matt I'll be able to exhibit some ignorance very quickly in my statements but I feel like there's a few things that just stick out to me Dr. Wheeler was mentioning the ICD-10 codes
I would be interested to have some clarity to Dr. Wheeler's point we can say we want this to be reimbursed or covered but not necessarily being covered at a reasonable cost right so while there's an existing ICD-10, a lot of times they're not specific to exactly what this is. So it leaves some creativity within the practitioner to say, okay, we've got to go with encephalopathy of an unknown etiology or something like that. And we really want to focus that we're treating
the right patient at the right time with the right intervention. And so I'll go the opposite way and say, I love hearing success stories with NSAIDs and antibiotics. But even with that, a practitioner's office time is extremely important and follow-ups are extremely important. So while the prescription being filled may only be $12 to $60, how do we diagnose them? How do we get that to be their office time to even have the suspicion to send them to a lab and get that paid for. That's
what I see a lot of times, and so I'm hoping that we're seeing, yeah, I forgot there's actually IVIG treatment for these folks because we're knocking it out so quickly at the front end. I see condition codes with many disease processes, whether it be diabetes or cancer, and those condition codes crosswalk, where as respect to a condition that stage one cancer, you're not going to necessarily go straight to chemotherapy. And I would say that a stage one, if you would, post-infectious
autoimmune encephalitis patient, you wouldn't go directly to IVIG. It's counterintuitive for the whole process. And so I hope that there's a lot of actual cost savings. We don't get our eyes fixed on the high, high cost and therefore hopeful, reasonable reimbursement. But what we have experienced for patients that even for lab draws or IVIG, we just had one where we went
through 368 days of back and forth of appeals before that we were able to get a partial payment on what was predetermined appropriate, but there is now, obviously, and here's where I'm going to show off a lot of ignorance, there are predeterminations and there are preauthorizations, but a predetermination and a preauthorization are not the same thing, and neither may equal a reimbursement. And so there's a lot of time spent through,
for lack of an appropriate or better word, bureaucracy, which equals money, and so those efficiencies. And so when you look at Arizona, Wisconsin, Stanford, soon to be Harvard, I hope, but, man, look at UAMS and Central Arkansas, I think there's a few things just should be on our radar. I'll name them quickly. It's not just Arkansas insurances that are going to be coming to your clinic. It's going to be surrounding contiguous states and even further away is we have that now in a little town called Benton, Arkansas.
people coming. So how do we address that? And then I would think that there would be a nomenclature of reimbursement, as I understand it. And I'm not looking for anything, but just to put it in the back of our minds, that if somebody goes to that multidisciplinary clinic, there's going to be a line forming quickly. How do we get things to that clinic in recorded real time so that that multidisciplinary clinic can then talk back to the primary care physician or the appropriate clinician that's taking care of that patient.
And I think this state does a fantastic job with telemedicine through UAMS Centers of Distance Learning. They do that with the Arkansas Saves Program, Arkansas Children's with the burn or multi-trauma systems. I think it's such a resource that's already there. And however we can see that we can get in that to communicate where you're able to see, and maybe somebody doesn't have to drive from northwest Arkansas to you but you're able when you come in to say this patient went through the algorithm in which
we told the physician or clinician to go through we're able to see it and then we're able to refer back I know that was a that was a lot but those were all things and the last thing promise is what we started off with is that awareness and being able to just hear look there's I don't know 2,000 people that work at Arkansas Children's Hospital, and of that population, some are key emergency room physicians. Do they even know when a kid comes in that they have a resource within
their own building to see these patients? I know recently, a lot of people say I don't want to put somebody on the spot, Natalie Bradford was referred a patient from Arkansas Children's Neurology to her clinic in Benton, Arkansas. And so to be able to get that information out in her facility and then out wider. We don't expect you to open the door and all of a sudden everybody's like, oh, I feel like there's Pans Pandas treatment in this building somewhere, whatever that is. But that would be something I would hope that we're able to key in on also.
Senator Kim Hammer
Unverified
1:07:38
I'm looking at under the duties, if y'all look at your rules of procedures, they kind of captured the high-level points of this advisory council's parameters and work scope. Under 2B, it says operate along with the interdisciplinary panel established by the act, determine, I'm sorry, I'm sorry, C, make recommendations concerning standard practice guidelines for the diagnosis and treatment. It'd be the chair's determination
and the co-chair can weigh in. That gives us a little flexibility when it comes to helping y'all determine what are the obstacles that need to be removed to where those codes could be established as expeditiously as possible so we could get that information to the insurance commissioner's office for them to do what we've heard today they need in order to be able to do. Chantel, am I
putting you in an awkward spot or am I going down the right path?
Speaker 110
1:08:42
Or what do you need for? So we would not necessarily need the codes. We would just need for the appropriate departments within the insurance department and the commissioner to be able to understand, and that's my job, to carry that back. but they also probably need more in-depth discussions to figure out how to approach this with the companies,
whether it be through a mandated benefit, to be able to come up with the correct wording, to be able to put that in a mandated benefit. So it would be something that I would need to go back, talk to the commissioner, and get with our legal division about and reach out and have more discussions about that and how we can approach that with the companies, whether it be through the mandated benefit or otherwise. Okay. Natalie, did I see your
Senator Kim Hammer
Unverified
1:09:48
hand go up or you want to weigh in?
Speaker 26
1:09:52
Yes, sir. I just had one comment and then one question. The comment is, I know we mentioned IVIG is the biggest cost that we're struggling. But I will let you know that also lab diagnostic would be a big benefit to be sure that's covered. Although PANS-PANDAS is a clinical diagnosis, there are labs that can help you, A, recognize it, and B, help you treat it along the way. And some insurances are covering it great, and then others are not.
And so although, yes, IVIG is a huge cost, but the diagnostic parameters would also be a benefit to be sure that are included to be covered and then my question for Dr. Panda and or Dr. Rainey what ICD-10 code is Arizona using currently so I don't remember the exact code but I don't
Speaker 100
1:10:44
I don't know if that really matters for the entrance coverage the actual code but
Speaker 94
1:10:49
they are using some sort of autoimmune encephalopathy okay yeah that's that's a diagnosis that they're using for
for the insurance coverage part. I think to address that insurance coverage question, I use IVIG for a lot of other, a lot of us use, it's very commonly used for other autoimmune conditions. It's, we never have problems with coverage. It's easy, it's one time, or sometimes you need one appeal or something, and it's, the reason is that a lot of, they're looking for evidence, they're looking for clinical studies and trials showing that, hey, show me that IVIG works for this condition, like a research, a clinical study or research trial, but we don't have that for this condition
because it's rare and it's not being recognized. So that's one thing that we're also planning on. So hopefully that will help. Again, that's in the future, in a few years from now on. But they have, like I said, if we diagnose using the criteria,
Speaker 121
1:11:42
if we diagnose them with PANS or PANDAS, and if they need
Senator Kim Hammer
Unverified
1:11:48
IVIG, it should be covered. Okay. Based on one thing
you just said, so layman's interpretation, You're saying we kind of have to build a defensible log of where it has been used to successfully treat individuals that have been diagnosed for PAN or PANDAS.
Could we expedite that by capturing what's been done in other states by the PACE Foundation so that we can adapt it to Arkansas and say, here just because it didn't happen in arkansas it has happened in arizona other states we can use that to go to you know to clear the pathway to for the insurance commissioner yes okay and members let me give you a comfort level we're not going to be ordering suffering because we're not going to be staying here that long but i'm going to go ahead and share this concept and this idea
based on the hours discussion that we had I talked to Representative Warren about the idea that we would take this advisory council and break into smaller subcommittees to take on some of the issues that are tasked to us in the duties and and let the let the smaller subcommittees work at their level to address some of the issues and bring back some recommendations at the next committee meeting about what are some definable things that we need to chip away and maybe have
some communications with the pace foundation uh through children's and uams so we can we can just basically cookie cut what they've done apply it to our setting to expedite the process but if you listen to the conversation there's some people that have some real expertise in a couple areas and some of y'all are talking over my head so i don't need to be muddling up the water but that is one thing we'll recommend is that we break into some subcommittees to take on some of these tasks to get them get them done quickly and expeditiously
all right any other questions for the doctors okay then limit
can y'all sit for a minute you got patients you got to get back and see I can okay yeah ten minutes yeah okay we've kind of centered around the the insurance and around that aspect of it but let's do this if you'll take
your if you take your rules of procedure and we'll just use that sheet it's got the five points identified under number two under duties making recommendations designed to improve increased knowledge and develop mechanisms to increase clinical awareness and treatment throughout the state I'm gonna I'm gonna make a comment and then you all weigh in just to get the conversation started this what are your ideas as a council as to how that would look and be the most
effective way to advance that forward while you're thinking of your answer let me say this let me ask if if Kim Hammer state senator came into a doctor's office and said I think you need to do this they might be respectful but they're not going to treat me at the same level that y'all would be treated with or Natalie or Dr. Wheeler so it seems like on that point a lot of that water is going to have to be carried at y'all's level or is it going to be carried at UAMS when they're educating doctors that
we do things different than we did 20 years ago. Would y'all just give us some open mic comments on that and then I'll open
Speaker 121
1:15:37
it up to the council to give input. Sure, I think children send UAMS to a
Speaker 94
1:15:42
lot of physician liaison every month. They have this disease focus and we go, sometimes providers go out and talk to the pediatricians in the community or we give you know that that's that's an opportunity to do that and we do a lot of grand rounds and in-house lectures and education programs to the providers in the within the institution like matt
was mentioning and we go out and provide talks educating the pro you know all
Speaker 95
1:16:05
the other providers so those those are some of the opportunities that i'm looking at and i have done that for my other other diseases and stuff so that's
Senator Kim Hammer
Unverified
1:16:16
that's doable what about as far as do you do you see that physicians are
becoming more open to the concept because one thing i remember when this conversation started three years ago some people looked at it as you know voodoo medicine just put a point blank
do you see that that individuals in the physician field medical field are are becoming more accepting of it or is there still a pretty good resistance factor out there what's your opinion from dr wheeler or dr cloud or natalie or any of the medical professions in the room so there might be
Speaker 94
1:16:51
still a resistance but if they know there is a place that they can send patient to i think i think they'll be pretty open
Speaker 90
1:17:00
to that in my experience anytime there's behavioral
problems involved. The physicians that are in the community as well as within our own service, they are pretty happy to be able to refer them somewhere. Dr. Wheeler, you got any opinion on it? No, I just concur with Dr. Rainey. Any other, Natalie?
Speaker 135
1:17:30
provider who's been treating this for the last two years that especially in saline county there's
Speaker 26
1:17:36
still a lot of resistance um i have pediatricians that will no longer even refer to me because they don't believe in it and i've received emails from them specifically and um so i think we have a long way to go as far
Speaker 113
1:17:57
as that goes personally okay chantel see your hand go up i'm just curious as to
Speaker 109
1:18:03
why they're resistant to this, and also what may have changed or has anything changed?
Speaker 110
1:18:10
Maybe the change is that the awareness maybe of seeing this now as opposed
Speaker 109
1:18:17
to not having this on anyone's radar many years ago. so the resistance is because um so when
Speaker 94
1:18:29
when we see these kids right so these kids they present what we call acutely meaning they're completely normal kids or you know they they remind at their baseline they do good they
have some type of infection within a few days they get really it's 90 360 degrees change actually they go mad they have other behavioral issues sometimes they have tics and things like that so that's that's what we're looking for in the clinical picture right but a lot of other kids other families or you know they they already have a baseline what an autism spectrum disorder or other type of behavioral issues and when so I think pediatricians get to see a lot of these kids with just a baseline autism spectrum disorder and and other type of behavioral issues when when they bring
this pants and panels to them they get so that's that's the most common scenario that they see in their clinics. And that's one of the reasons they get resistant to the diagnosis because your kid probably has an underlying anxiety problem or he has some type of behavioral issues. It's not pandas. Just go treat him with a psychiatrist. So that's the reason for the resistance. And the other thing is also, like you said, there is no education about it during, like even when I did my medical school, my residency training, there is no education about this at all.
Speaker 91
1:19:47
Anything that has, oh, I'm sorry. No, go ahead. Anything that has a behavioral component, I think it's easy to dismiss as not being real. And with autoimmune disorders, multiple sclerosis, that didn't exist. It was somebody just making it all up, right? Until they started actually science advanced enough to be able to do the MRIs and be able to see the actual changes in the brain. And so I think that things that have a behavioral component, it's easy.
If you can't find the other parts of it, it's just kind of easy to dismiss it. I have been seeing a lot of patients that I would say have had different etiologies. I have people referred for behavioral that it sounds like, well, there was something that's going on physically because it doesn't fit. like I said earlier doesn't fit the classic history of a psychiatric just you know strictly psychiatric and so I think that it's it's a educational and then also just the stigma of
anything if you can put it in the mental illness category it's you can pretend it doesn't
Representative Les Warren
Unverified
1:21:01
exist representing Warren I think it's real important when we met with you guys one thing that you told us that you have one staff person and i think it's important for everybody else to know this but they have one staff person who their sole job is going through every file that they get to
look at every piece of information that they get on a patient to try and see if that that referral is a proper referral for them. So, I mean, it's not just a quick, everybody that gets referred to them gets to be seen by them. And so they've set criteria for this person saying, here are things that we're looking for.
We've got to have these things in place in order for us to want to proceed further. So I think they've already done a lot of the work to say these are things that have to happen to be considered for this diagnosis. So I just think that's really the work you've already done is important. Anybody else? Matt?
Speaker 57
1:22:21
Just one comment that I don't want left behind.
Matt Brumley
Unverified
1:22:27
I'm so glad that we're talking about a grand opening at Arkansas Children's Hospital. One thing that's probably bothered me the most, just other than the name Pans and Pandas, is that P is pediatric. And that P, if anything, should be people. Because on your 18th birthday, it doesn't go away. And so I hope that we'll be all-inclusive to people, regardless of age, of those that have an autoimmune encephalopathy, regardless of the etiology, as we go forward with this and not get tunnel vision just on pediatrics.
Senator Kim Hammer
Unverified
1:23:07
Just a comment. So let me ask you a question, and it's going to be the chair's position to try to wrap this up in 15 minutes. And just disclaimer, the intent is to have a monthly meeting and give you enough advance notice for those of you that are, you know, practicing that and for everybody else's schedule that we can, you know, have time to schedule it. Okay. So how do you, it's kind of like telling a preacher what to preach.
how do you tell a doctor what to practice because how do we in your opinion overcome that resistance and is it just going to take time and then the population segregating out which medical professions are receptive to it versus those that are you know still denying that it exists what is your opinion as to what you would offer up a suggestion how we can can deal with that I think just education
Speaker 91
1:24:15
having the education there and allowing someone who maybe has seen some of the cases to be able to be a part of that education I just I think that's ultimately what it's going to take
Senator Kim Hammer
Unverified
1:24:38
Is UMS at the level where they're instructing physicians now, including this, in their academic
instruction? Are they, is it part of the, for lack of a better
Speaker 91
1:24:54
term, textbook they're using, that they're educating doctors that are? I would guess not, just because of what Dr. Panda had pointed out earlier, just about needing a protocol because you have to be careful about making sure you're teaching things that are scientifically accurate and that you've got an actual protocol for it and so I think that we're in the early stages of kind of understanding the extent of this and so it's it's not in the
textbooks at this point in terms of it's there's pans and pandas is in some of the psychiatric I know and some of their training but but even so it's it is oftentimes sort of dismissed because it is pretty rare but I think that being able to recognize it is important and so getting getting a protocol is going to be really important and that's part of the having the different sites that are doing the
studies and gathering information and getting a more consistent a nationwide protocol for diagnosis and making sure that the labs and things are
Speaker 90
1:25:59
covered and and then also for treatment okay and let me ask you this question
Senator Kim Hammer
Unverified
1:26:05
it i use a lot of church analogies because i'm in church work but it's like there's enough centers to go around churches don't have to fight over them okay but when it comes to like natalie just referenced some physicians that are not even referring because they're non-believers what is the how are we going to how do you see the
structure working so that there's not a perception that y'all are trying to build a standalone clinic and exclude everybody out what's give me the give me the vision of how this is going to work to where physicians don't feel like children's or ums is stealing patients away and how are you an asset not a liability to somebody like natalie
Speaker 90
1:26:48
or some other physicians the pace foundation is already starting this in terms of in Arizona of where they have
Speaker 91
1:26:54
someone that goes out into the community and helps with the education of all the local pediatricians and going and speaking at
different society meetings and so they have kind of set out sort of a blueprint of how to go about it and so from what Dr. Panda had also mentioned about the different opportunities for giving those types of grand rounds and they they have they
Speaker 90
1:27:18
had to start with just educating within their own their own community their own university and then branching out from there as far as you know communicating
Speaker 148
1:27:28
with providers or stealing patients I think this could be just a one-time deal they
Speaker 94
1:27:35
come to this multidisciplinary specialty clinic let's say they get diagnosis or not then we can communicate with the providers locally in terms of how to follow them periodically what type of treatments they need, and we can keep an open communication with the providers who are willing to treat the patients. Okay.
Speaker 13
1:27:55
Members, have any questions for the doctors? Yes. One
Representative Les Warren
Unverified
1:28:00
more. I grew up with a dad that was a family physician, so I went to meeting after meeting with all
the family physicians. Is there a similar deal with pediatricians? conferences okay they don't have dr
Speaker 150
1:28:16
wheeler yes okay we need to set up a
Speaker 152
1:28:20
booth at that meeting there's there's there's two
Speaker 53
1:28:27
vehicles we typically do have a number of continuing education conferences that occur nationally that people attend we have some statewide we also have a thing called peds place which is a telemedicine
broadcast across the state educating people within the state as well as people at the children's hospital and you know you guys could easily get on the schedule to present there if
Speaker 61
1:28:52
you haven't already so i know what committee you're
Speaker 113
1:29:00
on all right any other questions yes ma'am chantelle so in regards to the continuing
Speaker 110
1:29:06
education um who would be the body to take that information because they have the conferences do they ask like pace foundation to come in and speak or
my father was also a general practitioner in a small town but they he would always have the continuing education so will that be something that they can address to get it out to the wider community? Yeah, so I do
Speaker 148
1:29:33
a lot of these talking to conferences for neuromuscular, my other specialty. When the
Speaker 94
1:29:38
community out there, when the organizations out there know that these physicians are specialized or they do this, they reach out to you, hey, can you come and
give a talk about this in this conference? And yes, the organizations like PACE Foundation and stuff, they reach out to them also. And we can reach out to them
Speaker 146
1:29:55
as well, to the organizations as well for the meetings and stuff okay anybody else let's go
Senator Kim Hammer
Unverified
1:30:03
with John first then Dr. Wheeler I'll keep this short
Speaker 40
1:30:10
but from the clinic perspective when does it open so we did a soft opening
Speaker 121
1:30:15
and we kind of started seeing one or two patients
already but I think the plan is to do a grant opening sometime next month okay and then
Speaker 40
1:30:24
follow Can I ask a real quick follow-up? Sure. Okay, follow-up. With regard to our charge of gathering information, statistics, and that kind of stuff to help raise awareness, do you think we'll get that as a result of the clinic or does some of that data already exist? Do you have an idea how big the scope is in our state? I know potential referrals from other states and other nations are also a possibility, but do you have a sense for what the scope is in Arkansas
or do you think you'll get a better
Speaker 158
1:30:51
picture as you see more patients? I think it will be better when we see more patients, but I don't know if Natalie
Speaker 135
1:30:59
can. I don't know how many patients that she's already seeing here. I can tell you
Speaker 26
1:31:03
that I've been seeing patients since August of 2017, and I currently have around 100 patients from all over the state that I see
Speaker 51
1:31:13
with this diagnosis. Dr. Wheeler. I did want to make one sort of educational clarification.
Speaker 43
1:31:19
There's pediatricians and there's family doctors who treat children. and really the largest group of providers who take care of
Speaker 53
1:31:27
kids in the state is actually family physicians. So going back to the continuing education, they have two very large conferences each year here, which is another place to get on the menu for presentations, and that's pretty easily done as well. All right, anybody else? Yes, ma'am. Sue?
Speaker 38
1:31:50
we we keep focusing on educating our pediatricians on that
Speaker 160
1:31:54
i think we need to remember our mid-level providers because so many of these patients are seen initially by a mid-level provider and that's uh part of the reason the legislation
Senator Kim Hammer
Unverified
1:32:07
was crafted the way it is because when you look look left and right we've got about all the disciplines covered so it's not going to be one it's going to be all of us working together to get the word out and i think to keep it keep it elevated high as
far as it being the real deal and not something that we ought to stick our head
in the sand about matt yes
Matt Brumley
Unverified
1:32:30
mr chair just uh i don't know if like for you to consider that at our next meeting there's so many different silos that need to be looked at and you mentioned us breaking up or breaking into groups that maybe we spend a amount of time i can't get my mind off these school nurses and counselors and teachers that see children daily and see how they change very quickly. And then physician's office, all the things that we need to be looking at that
maybe we just plaster them on the board so we can say, hey, you know what, that's really what I should be called to do. Or I might say, Natalie, look, that's got your name written all over it that we there's so much to dissect i guess is what i'm saying maybe we could spend some time doing that
Senator Kim Hammer
Unverified
1:33:18
just a suggestion chairs open to all suggestions
uh the one thing i think that i hope we would see sooner than later is that if a school counselor a nurse the people that are in
the trenches dealing on the front line with these kids foster parents um you know that's that's somebody really we don't have in the room we need to have in the room foster parents but all these people that are dealing with the kids on the front line part of the educational component is going to be i think is going to be able to tell them well if your doctor doesn't want to or your whoever you're going to doesn't want to consider this here's a list of physicians and here's a clinic that you can call so at least they can get the diagnosis or get the you know get
the awareness and the treatment they need and
Speaker 26
1:34:07
i think that'd be part of the education natalie i will say one thing you that has been addressed is how do we get non-believers on board i do really feel like when children's and uams is on board a lot will follow because i've had many say well this doesn't belong that this doesn't exist because children's doesn't treat it um and so i do feel like that i mean i think there's still a long way to go and all this education and everything we've discussed is important but i do think once the name of
children's and UAMS is out there I think that's going to help a lot and I was also going to say talking about mid-levels I will tell you that the UAMS PA school they are not teaching it yet but I precept about five to eight of their students every year and those PAs are coming out knowing about it that's good anybody else here's
Senator Kim Hammer
Unverified
1:34:57
going to be the chair's recommendation with representative warren and dr cloud weigh in as well he's vice chair as well if you look at the
sheet that has the rules of procedure on it there's five critical areas mentioned under number two chair's opinion the top three kind of naturally go together and the bottom two kind of naturally go together what i'm going to recommend is that we create two subcommittees of this council that will focus on those areas and the respective chairs all four of us working together will work with those subcommittees to try to help um digest what the what the focus is so that you can come
back to the next committee meeting and subsequent committee meetings with recommendations about how we can achieve meeting those goals so what i'm going to ask is if nobody objects or um maybe if i can get a motion to create two subcommittees uh with the explanation the chair has given then what we're going to do is give you an opportunity to pick which of the two you would like to serve on if you don't pick one of the two the chairs will assign you one and um we can get those together and then we'll meet with you as a subcommittee
and it's also my opinion we can do a lot through email telephone and conference calls without them all geographically come to the same location and we work around everybody's schedule so that we can have deeper dive on those subject matters in those two separate categories I'm not going to take a motion right now to create that I'm just going to open up the mic and ask you what do you think and do you do you have anything to weigh in as far as what you think about that approach I'd entertain a motion to create the two subcommittees one will focus on a through
c the second one will focus on d and e that doesn't mean they won't overlap in the intercommunications but for the sake of boundaries that give us two set boundaries second second any discussion
all in favor say aye opposed all right Carol
you're the chief contact person right right okay so I'm gonna ask Carol to send out an email to y'all that will
ask you which committee would you like to serve on and you send back which one you think you'd like to serve on as i mentioned a while ago it seems like there's some expertise in certain areas um and so you and if we need to say hey we're loaded up could you would you mind doing this the chairs will work together to communicate that to you but carol will send you an email you respond by which one you want to get on then the chairs will get with you and we'll do a little organizational meeting and and identify some clear goals and purposes all right that being said um you've got a handout from dr smith that kind of talks about where they are
moving forward what we're going to do is take today's discussion formulate into those two subcommittees start attacking the issues and um our goal would be that when we come together now that we'll probably call quite honestly i'm talking out loud we'll probably call for a meeting before the joint meeting with the Ryans because if we come into public health and have the they've not been privileged to this conversation they're going to look at us like what are you talking about so we'll come together probably an hour before the joint public health
committee meeting have our discussion then adjourned to join them and then that way it'll it'll keep it cleaner okay all right so wrapping it up um anybody have any any additional thoughts or questions comments co-chair i'm good good all right so in summary we're going to do get those two subcommittees we pretty well have a good conversation understanding where we are glad to have
pace foundation involved that was different than when the legislation was run and I think the next meeting will be a very good meeting as well thank you doctors for
taking time to be here today as well as committee members appreciate it with that we're adjourned thank you
Agenda
A. Call to Order
B. Appointment of PANS/PANDAS Advisory Council Member and Acceptance of Chair Recommendation from the Interdisciplinary Panel
C. Introductions
D. Consideration to Adopt PANS/PANDAS Advisory Council Rules and Procedures [EXHIBIT D]
E. Discussion of Act 878 of 2019 creating the PANS/PANDAS Advisory Council [EXHIBIT E]
F. Discussion of Interdisciplinary Panel – University of Arkansas for Medical Sciences
G. PANS/PANDAS Clinic at Arkansas Children’s Hospital
H. Other Business
I. Adjournment
Documents
Speakers
Senator Kim Hammer
Unverified
Speaker 3
Speaker 4
Representative Les Warren
Unverified
Speaker 19
Speaker 6
Representative Joe Cloud
Unverified
Speaker 25
Speaker 28
Speaker 30
Speaker 31
Speaker 32
Speaker 34
Speaker 36
Speaker 37
Speaker 39
Speaker 40
Speaker 43
Speaker 51
Matt Brumley
Unverified
Speaker 71
Speaker 76
Speaker 90
Speaker 91
Speaker 93
Speaker 94
Speaker 97
Speaker 95
Speaker 49
Speaker 109
Speaker 110
Speaker 113
Speaker 116
Speaker 120
Speaker 121
Speaker 26
Speaker 100
Speaker 135
Speaker 57
Speaker 102
Speaker 148
Speaker 13
Speaker 150
Speaker 152
Speaker 53
Speaker 61
Speaker 146
Speaker 158
Speaker 38
Speaker 160