Arkansas PANS/PANDAS Advisory Council
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0:00
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Senator Kim Hammer
Unverified
9:30
um pressing places to be um we have at least two doctors in the house dr smith and dr sharp i know they
would like to get back to their patients as well as natalie and some others so we're going to try to be respectful of time with that being said uh represent warren do you have any opening comments i do not all right and so what i need now is a motion to approve the minutes from the
okay thank you uh got a motion uh all in favor approving the minutes say aye opposed all right and next on the item agenda is interdisciplinary panel team report and so i'm going to ask i guess dr smith you want to come and speak to
that and then i know there are other members which would be natalie and matt that are on that and you can chime in as well so dr smith yes
all right would you come on up please and if
y'all would once you take your place um push the button when it's green just name for the record please sir i think they'll do it from their seat just for the sake of
time and they can chime in and all right and dr smith if y'all would introduce yourself for the record please
Uh Rick
Unverified
11:07
my name is uh rick smith and i'm
Speaker 13
11:15
a physician at uams I'm Veronica Rainey. I'm a psychiatrist at the Child Study
Senator Kim Hammer
Unverified
11:23
Center, which is a UAMS clinic. If you
Speaker 15
11:27
all would just give us an update on the interdisciplinary panel,
Speaker 16
11:31
please. So the interdisciplinary panel met on Friday on a conference call and discussed
Speaker 15
11:40
a number of our issues. The panel asked us to put together several documents that
Speaker 16
11:49
Dr. Rainey and Dr. Aurobinda
retrieved from the Pace Foundation in Arizona and in Tucson. on, and I'm going to, Mr. Chair, I'll ask if you want us to, Dr. Rainey, to go through this very briefly, just to at least say what the content is and which pages and all of
Uh Rick
Unverified
12:07
that, and I'm happy to pass, I have 30 copies, so I'm happy to pass this out to the committee. That'd be great, if you don't mind, if
Senator Kim Hammer
Unverified
12:15
we can get some help from staff to pass those out, please, and while we're doing that, let me just make this one comment. If you read
the piece of legislation, and I'll accept responsibility for this, I or the, we just didn't catch it in the draft you'll read the phrase interdisciplinary panel in one part of legislation and then you'll read interdisciplinary team in the other part of legislation they're both one in the same we just for some reason didn't get the same word twice so for those of you that may be wondering about that and we'll refer to it as the interdisciplinary panel moving forward so just know that if you read that that's what that refers to
And as soon as we get that, Dr. Smith and Dr. Ranney all
Speaker 13
13:06
can proceed. Okay, so on this, just in terms of what's contained, page one has a brief introduction to what the aim of the CPAE clinic is as childhood post-infectious autoimmune encephalopathy clinic, and then a brief summary that I'm sure some of you are very familiar with in terms of the diagnostic criteria for pans and then page two has differentials so that's a list
of explanations of things other than pans or pandas that might be going on that present with similar symptoms page three has the pre-appointment lab requirements that the the cpae clinic in arizona provided with us that are very important with helping to rule in or out different differentials and taken in context with the presentation of course not the labs alone page four has an outline of the clinic process and it kind of highlights
the importance of all the different port parts of the assessment which includes the family history medical history the presenting problems the physical exam and then the labs taking all of it into account and those are used then to reach a diagnostic category or code. They refer to it as diagnostic code, but I changed to say diagnostic code slash or diagnostic category slash code because it's not really a code for coding for anything. It's just to have the conversation among the different clinics so that
you get the kind of the stratification of the symptoms that the patients present with. So it kind of helps to aid in the discussion for how to approach treatment for those patients. and then page five has the diagnostic categories and the treatment approach so it's got the tiered treatment approach that the cpa e-clinic in arizona worked out also and they were kind enough to share with us and then page six is the treatment process and it describes the follow-up
process after the initial start of treatment and then how did how do we do the follow-up And the pages 7 and 8 contain the course of illness, sort of a proposed explanation. It's mirrored off of multiple sclerosis, which is also an autoimmune disease. And so that kind of gives kind of an outline also to help with talking about it. And then the last page of this has an interim phone number for the clinic in terms of referrals.
Speaker 16
15:47
The clinic will be at Children's Hospital, is at Children's Hospital. They have been seeing some patients there. We've had some challenges getting our full act together, but this number is at the Child Studies Center, which is on the Children's Hospital campus. The nurse, we have brought to be one or two nurses that will help us do the medical record review
and support the families starting in a day or two, but this week this will be active. Then we'll be hiring a nurse to be a full-time nurse to work in the clinic and do the work and support Dr. Rainey and Dr. Aurobinda. Members, I meant to mention, if you want to
Senator Kim Hammer
Unverified
16:44
ask a question, just raise your hand and Carol will see your hand and we'll get
you in the queue to ask any questions. So let me just start off by asking a few.
How many do you have right now to be seen? I know there was a little confusion,
Speaker 16
17:03
I think, the other day about the numbers. There's still confusion about that, and I think that we even had a conference here. We were unclear. Dr. Rainey has been seeing some. Dr. Aurobinda has seen some. I suspect there are probably 10 or so that need to be worked up and expedited, and we'll be working on that.
Speaker 28
17:27
Dr. Rainey and Dr. Aurobinda are prioritizing them.
The kids that are most critical and urgent are moved ahead. okay
Senator Kim Hammer
Unverified
17:34
and the number that's being posted did you say that's a dedicated line or is that
Speaker 30
17:40
a line that's a dedicated line to the child study center and it will be answered
Speaker 16
17:46
and there'll be somebody there to talk to and if not because we have a part-time staff for temporarily the people will
Speaker 15
17:53
be called back that day or the next day to get the referrals in okay
Senator Kim Hammer
Unverified
18:00
and do me if y'all would do me a favor turn your cards where i can see them please because i'm a little
Speaker 33
18:13
disadvantaged thank you all right chantelle so along the lines of intake i know from experience
Speaker 35
18:18
that recently um intake has changed from children's and has moved on to uams doing the intake for the child study center we're doing the intake the clinic
Speaker 16
18:32
the clinic is going to be operated in the neuroscience portion and dr sharp who's on the committee can correct me but the uh he's the medical director at uh at children's will be in the neuroscience portion at children's hospital uh uams staffs all of the physicians for children's hospital so dr rainey and dr arabinda will be seeing the patients uh instead of the nurse working as an employee of children's hospital the nurse will work as an employee of uams
and he or she when they're hired will sit at the child study center which is on the children's hospital campus which is
Speaker 35
19:14
how it it used to be for intakes are you saying there's going to be a different intake because i know that that there's a three-month wait for intake into the child study center and i'm just wondering um aside from the children who are going to be moved forward what that would look like for them like intake dr rainey is the medical director of
Speaker 41
19:42
her answer thanks there there should not be a three-month weight at this point in terms of getting in I know that we've got just a lot of access changes going on right now so there's times that it's going through the call center and times that it's coming to our clinic and so if they it we have a triage process set up where a person who's you know clinical a clinical provider who's able to kind of to make those decisions decides if
somebody needs to go through therapy first or through the the med clinic side first and then see and then once that person sees them to decide if they need to be seen for both sides of our clinic but who is who is telling you the three-month wait i can't
Speaker 33
20:32
remember her name but i I called in directly for an appointment for a child. Do
Speaker 35
20:39
you know when that was? It was last week, and their appointment was given in June for intake.
Speaker 43
20:46
May I ask a question? That's because it's
Speaker 45
20:53
a new patient. Is that specifically just for the Child Study Center?
Speaker 38
20:57
Child Study Center. So my connection was trying to figure out. It is directly
Speaker 35
21:01
for the Child Study Center, center. But I'm wondering if the people who are coming in for PANDAS, unless they're moved
Speaker 16
21:07
straight ahead through like a physician. This is a unique PANDAS number, which will be a separate operation. It's just going to be housed there. So once this interim number will get you the
PANDAS, PANDAS, CPAE, nurse. Right now it'll be a temporary nurse until we get somebody hired, which we expect to be able to hire. We've already got somebody identified and we're talking with are right now. She's already a UAMS employee. But these kids will move expeditiously. Now, there is a back and forth. It has to be a primary care physician identified. There has to be some preclinic assessments. There has to be some lab work done. But they'll start on it right away.
So there shouldn't be a wait to get started on it.
Speaker 35
21:56
Okay. I'm just concerned about access. with especially like with the pandas we need to
Speaker 16
22:01
get the funds flowing but uams has agreed to front the money to get this going dr sharp did you have anything
Senator Kim Hammer
Unverified
22:08
else to weigh in on that no i
Speaker 50
22:12
think it's just being i think it's a very specific clinic for it so it there are a wait list of different types in child studies center and in the neuroscience center but for this specific clinic it would be if you if there was a referral made to this clinic it would be applicable
Speaker 54
22:28
to that clinic only these are two separate clinics they're not housed at the child study center
Speaker 50
22:37
okay right so the actual clinic will be in the neuroscience clinic at children's hospital that'll be the setting of the
Speaker 58
22:44
clinic all right representative warren yes
Representative Les Warren
Unverified
22:49
thank you mr chairman i was uh just curious and i'm i'm still learning names i've been so proud of myself for being able to say Verapendian. My name is Smith, so you should... That one's easy. I was going, I leaned
over, I was going, who is R? So I get Ara for his first name, but anyway, when we were there doing the tour, there was a single lady who was designated as the collection
point, a lady who was taking in all the data on potential patients and condensing it, compiling it, so that the doctors would be able to look at everything. It was sort of a clearinghouse. Is she still with you
Speaker 13
23:37
guys? So that was probably at the neurology clinic, and it was a nurse that was filling in, would be my guess, because the goal was to hire a nurse dedicated to that, to be the nurse coordinator for the cpie clinic and um so that that's where that hire has not happened yet in terms of finding a
Speaker 64
23:58
permanent nurse but you did have a lady right she yes she was she
Speaker 16
24:03
was there that day dr rainey wasn't there but there was there wasn't there was a dr arabinda's nurse his neurology nurse was there but she supports him and his other work and when when we found out
just before your visit that this takes a full-time nurse for a half to a whole day of clinic a week. That's unusual because there's so much pre-work that needs to be done. So that's been part of the starts and stops and starts and stops. And so now the money that is coming forward to hire the nurse will then allow us to have somebody working full-time on just these kids. That helps me. Thank you.
Speaker 68
24:46
did you say that there the workup has to be done prior to the intake from a pcp or did i misunderstand
Speaker 41
25:01
the the lab before caps there are parts of it that are what happens is and this is where the nurse there's it's a unusual and that the system involves the nurse coordinator so heavily is the call comes to the nurse who then collects initial information talks
with the doctors and they decide we need these labs before they even come in so that we can see you know so that we can make some decisions when they do come in after
Speaker 71
25:30
we've done physical exam and interview and everything so what is going to be the procedure if a pcp is not willing to do
Speaker 13
25:38
the lab prior to them seeing you um well the primary care what they've done in arizona is
Speaker 41
25:45
if if they refuse it's it's harder to provide care for those patients and so they will get the they
will order labs then it will just delay the diagnosis
Speaker 71
25:54
that much more it's just i can tell you there's a lot of pcps in this area that
Speaker 72
25:59
won't do lab before they see you so that's my concern is i mean and and delay is appropriate i just wanted to be sure that we were we had a plan because um and hopefully that changes um but there's a lot of pcps that aren't going to be willing to do lab for this prior to them seeing you the other thing that could be done there with
Speaker 51
26:23
the appropriate intake through the nurse is that orders and once we
Speaker 75
26:27
have the patient registered in the system. Orders for labs could be done and the patient could come to lab at Children's Hospital and have the labs done prior to clinic. The whole goal is to have all that information when the patient comes so that visit can be as efficient as possible. I think we could make those arrangements when they were necessary. And
Speaker 41
26:50
in fact, just to, that reminded me of last, whenever
we had that conference this past weekend, they modified their process because of running into issues with getting patients in to where they have, they've hired an APRN that does the initial visit, and if they haven't had labs done, they'll get them then, and then when they come in the second time, it's usually the next day, is to see the doctors. One of
Speaker 16
27:18
the dilemmas is if you have a patient in our state, say from Pocahontas or like a patient that was referred to us not long ago from Kentucky, we can't really do the follow-up
here for the family, so we need a primary care doctor that can help us with that follow-up and
Speaker 26
27:36
can be in discussion with Dr. Rainey and Dr. Arubindia. If I may interject,
Senator Kim Hammer
Unverified
27:43
so is it a matter of education and this thing just being, as we continue to put emphasis on it becoming more acceptable around the physician world because why would a physician not want to do the blood work as a workup first is it a matter of
insurance reimbursement or is it a matter of just getting educated on the on the process from any of the professionals in
Speaker 79
28:09
the room from my personal appearance experience the last two and a half years it's
Speaker 72
28:14
been a combination of both but the majority of the ones when i'm getting told absolutely no, it's because they don't consider it a true diagnosis. And I've been told that to
Speaker 15
28:25
my face. So our plan is we have some of the money dedicated to physician education, and we'll be
Speaker 16
28:31
going out doing what's called academic detailing, which is going to doctors and doctors groups and saying this is a diagnosis. These are the symptoms and signs to look for. And the first case that you all saw
Speaker 40
28:42
was pretty successfully done. It was already diagnosed before you saw them and they'd already started them on azithromycin, the one from Fayetteville, I think, from Northwest Arkansas. They had started
Speaker 12
28:53
it. It was a different antibiotic. Okay. Yeah, but it was, yeah. Okay. Any other questions? Matt?
Speaker 89
29:05
I've got a couple, actually. What's the expectation when this number is called tomorrow?
Speaker 16
29:14
Tomorrow, the number is there today. I am trying to get the nurses, part-time nurses available to help us until we hire the person. My guess is by the end of the week we'll be able to have those nurses trained and ready to go. The part-time, they're part-time nurses until we can recruit the full-time nurse and
and there'll be callbacks, and I hope Dr. Rainey has the time to help educate a couple of our psychiatric nurses on how to be able to advise people on how to get this information. The reason
Speaker 89
29:58
I ask is we certainly don't want to be counterproductive in publishing a number that just turns
Speaker 16
30:07
people off? I would wait, frankly, until a week, something.
We just had that conversation on Friday, and I've been scrambling. Dr. Rainey typed all this this weekend, so we're working pretty hard on it. Okay. I'm not trying to – I'm
Speaker 90
30:22
just trying to get it at the right time and not necessarily at the right
Speaker 16
30:26
time. Eventually what we're going to do is get a cell phone for the nurse, and the nurse will carry the cell phone during the working hours, and there'll
Speaker 97
30:33
be an after-hours number, but I don't know that there's a reason for an after-hour referral, but if there is, then we'll work on
Speaker 16
30:41
that. We'll have a pager or something, but I just think this is not a reliable number to publish widely until it's not an interim number.
This is a number that I could move somebody out of an
Speaker 89
30:54
office this afternoon and publish. Okay. My other question was the C, the childhood part, is our mission, as I understand it through legislation, is to get insurance companies to have a reasonable reimbursement for treatment and diagnoses of this. I have an inherent concern that once somebody is no longer considered a child
that they move outside of the payment for that insurance, just as somebody having gestational diabetes who's not pregnant might not qualify any longer. Is there a reason why we must put
Speaker 16
31:35
childhood in there? No, I think that's been the practice of the PACE Foundation and the clinics that are in the network. We certainly have the provisions to see these patients at the Psychiatric Research Institute, and we have geneticists and immunologists to work with us for adults.
I had understood the focus was on kids, but we have the capacity right now to do that.
Speaker 97
32:00
So Dr. Clothier sees those patients, and he's asked Dr. Rainey to come over and see them with him. Representative Warren.
Representative Les Warren
Unverified
32:17
Follow-up with what you're saying, Matt, is that going to limit us with that terminology?
Speaker 89
32:25
That's my concern, the very title of it. Clearly, I would not be entitled to coverage under that. My understanding was the scope of care was to broaden. While we're not there today, I think we should be prepared to be there for tomorrow and not revisit with a bunch of payers, insurance companies, and entitlement areas to say, okay, now we need to recode for that, and does adulthood look the same as childhood? If you've got an inflamed brain because of an autoimmune infection, then I think you
Representative Les Warren
Unverified
33:03
perfect case. The reason I'm on this board is because of a kid that I had in my youth group, an all-American kid, who is now probably 22. He's an adult, but still suffers from this disease. So I would not want to see him removed or unable to benefit from this process.
So, and that sort of ties in with, we were talking about the blood work and getting that done beforehand. And I guess in my legislative tenure, one thing I'm seeing, working with passes and everything, is some things don't even have a code. and you submit and there's not a code to to get reimbursement so my question is do we have codes
for pans pandas that we're going to be able to get reimbursement or is that another obstacle that we need to get the insurance department involved and make sure that we don't have another hurdle you're trying to treat someone and you're not getting reimbursement? I think, Representative Warren,
Uh Rick
Unverified
34:35
there are two issues in what you say. One is, is there a code? And two, can you get reimbursement?
And those are two different issues. So even though I spent two fruitless hours this afternoon looking through ICD-10, trying to find the appropriate codes, and I couldn't find the codes, but I haven't had a billing expert help me do that yet. I'm convinced that there are some codes, and there are some that our consortium has recommended that we use, and I could not find those either,
but I'm not the best detailed person
Speaker 97
35:15
like Dr. Rainey is. Getting a payor, whether it's Blue Cross Blue Shield or Medicaid, to pay that or even Medicare to pay it because some of these adults will be disabled and they'll be covered by Medicare is a different issue. And we'll have to do that payer by payer as I understand
Representative Les Warren
Unverified
35:38
it. But I guess that concerns me. You're an educated man in the medical field
and you're saying you've looked but maybe you couldn't find it and you know that's about I know but I'm saying is it is it so difficult that it's hidden from so many people that bothers me that it codes are so hard to find
Speaker 64
36:07
I think once we work collectively with payers, the payers will tell us this is the code for reimbursement
for us. And then we've got to get them to say yes,
Representative Les Warren
Unverified
36:23
they will pay it. And I guess I want to just back you up by saying if you have trouble with codes we would like to know so that we can see
Speaker 97
36:33
if we can help. That's great because we have a 16 year old that's on our women's unit through an exception right now who has an inflamed brain. She may not be infectious, but she has encephalitis, and we've had to block off two whole rooms just to keep her there
Senator Kim Hammer
Unverified
36:55
about two weeks ago. So, yes, thank you. Thank you. Dr. Cloud? Dr. Representative Cloud, I believe I
Representative Joe Cloud
Unverified
37:05
said that right. Thank you, Mr. Chairman. I just want to echo what Mr. Brumley said. A lot of the verbiage in this report has to do with children and dosages for children. So in no way, I just want to be reassured that we're excluding adults with an autoimmune encephalopathy.
And then also to what Representative Warren stated, again, to reiterate, a lot of these practitioners that have had some hesitancy in ordering all these labs, they don't want to have to eat the cost of those labs. So as we develop this, we want to make sure they're taken care of to be an advocate for the practitioner that is then going to refer to you folks.
So we want to be able to do that. So just please let us know. Thank you, Dr. Representative Cloud. I hope
Speaker 97
38:01
you're I want I want to support you in your efforts, because we see adults already with these issues and take care of them for the rest of their life at the Psychiatric Research Institute. so yes, I agree with you. And to that point, that's part of what we're here trying to get
Senator Kim Hammer
Unverified
38:15
done is you've got to have the code in order to be able to bill the insurance company
for us to be able to expect them to pay. I mean, is that kind of to the point of it all? Yes, I really think
Speaker 111
38:29
it's my limitation this afternoon on finding the code. I think there's billers
Speaker 114
38:40
that can help me find a code I just all right yeah I just want to give an experience that we've had with code with I am a parent of a child who's diagnosed and he needed IVIG a couple years ago and billing through Medicaid it went through but they would only cover a hundred and forty dollars worth of an eight thousand dollar treatment so there's more than even just the code there there's the
reimbursement rate that's an issue that we need to
Speaker 72
39:11
work through natalie i agree i can tell you the codes that are currently being used is d 89.89 which is other encephalopathy and g 93.49 which is other autoimmune unspecified i don't know if that's what arizona is using i know that's what dr fry was using before he left the state of arkansas and i know that that is what some
Speaker 119
39:34
insurances are covering my lab all right john yeah i was just going to comment or follow up that it's you know they may pay for it for an office visit or they may pay for it for one thing and they may not for another back to the point about the medicine so it's not as easy as is this the standard code. It's also matching that code to whatever service you're trying to get reimbursed
Senator Kim Hammer
Unverified
40:01
for. So we know what the problem is. What's the solution? I mean, from your perspective,
I'm going to call on you first, Dr. Smith. I mean, is this where we're down to? We've got the code, but we've got to work with the insurance companies to get the
Speaker 97
40:15
reimbursement rate up. Is that what we're down to? I think we're, I think we have to get some, we have to have discussions with payers whether it's an insurance company or whether it's Medicaid. And then we have to say, we have to get an agreement from them because it's not been covered heretofore, and then see if we can get
Speaker 107
40:36
it to work. And if it doesn't work, that's a legislative issue.
Senator Kim Hammer
Unverified
40:41
Okay. And I would say this. We did try to get Blue Cross Blue Shield in the room today, but it didn't work out. But at the next meeting, we will have some of the payers here, including Medicaid so we can have this discussion with them in the room
okay all right any other any other questions at this time on this and we kind
of grouped item we kind of grouped item D and F or E together really in this conversation we're being pretty free with the conversation in
room um so this is the uh this and by the way um dr rainey thank you for doing this all weekend you it is appreciated doesn't give you your time back but it is appreciated the um is this the pathway forward then as far as what's to be expected for the pcps
that are open-minded to this is just kind of the blueprint they need to follow help a layman understand
Speaker 83
41:42
so this is something that can be used as
Speaker 13
41:51
long as I guess as long as it's done with any kind of of doctoring you've got to make sure that you're using you're putting all the different information together so you couldn't just pick out one thing out of this in terms of saying I'm going to do this you have to make sure you're taking into
account like you wouldn't order all the labs for every person you would look at what symptoms are going on what's being reported how long all of that before you decide what kind of labs to order this is all the possible labs you know they've got lists in here for that and then so it's it's kind of using your medical knowledge to make a discerning decision which will be part of I think the education that we will need
Senator Kim Hammer
Unverified
42:41
to be doing with the primary care folks okay all
Speaker 114
42:47
right any other questions comments I just have one more question about the interdisciplinary committee on in the
bill it says on page three line line five that there's a member at large she was a medical director or medical officer from an insurance company licensed in the state do we have that on our team to assist with
Senator Kim Hammer
Unverified
43:11
the insurance end of this the members of the interdisciplinary team as i recall without having the cheat sheet in front of me are of course dr smith dr rainey dr panda um natalie matt am i missing anybody
am i missing anybody so those are the those are the members of the
Speaker 113
43:35
interdisciplinary team so my question is we seem
Speaker 114
43:37
to be missing one of the key points of the bill that could alleviate some of the insurance
Senator Kim Hammer
Unverified
43:49
issues did you have conversations with it's who is it dr smith with blue cross blue shield that's
Speaker 97
43:54
on I've had a conversation with Dr. Martin, M.R. Martin, with Blue Cross Blue Shield, who is their policy medical director.
And I've had two initial conversations with him, and we plan to get together with him in the near future to go over the protocol. So
Senator Kim Hammer
Unverified
44:09
that's who it is, and that's who we'll have at the next committee meeting. And we'll
ask Medicaid to be in the room as well. And I would take
recommendations from y'all or Dr. Sharp or Natalie or any of the other medical professions in the room. If you think there's a couple particular providers that would be good to have in the room,
if you'll let Carol know who you think ought to be in the room. And as a parent, if you've had personal
experience with a provider, just see Carol afterwards and tell her who it is, and we'll work to get them in the room
Speaker 97
44:47
for the next meeting. Senator Hammer, we're probably going to need a representative from one or all of the passes because
Speaker 107
44:54
they're, I mean, Medicaid directs them, but they have to follow through. We will invite them, too.
Senator Kim Hammer
Unverified
45:03
Had a meeting with them at 11. We'll have them in, too.
Anybody? All right. Anything else? All right. another agenda item and this is
the last one unless anybody else has anything else you have well two things actually you have a copy of the breakout of the subcommittees we broke them into two subcommittees representative warren is going to be serving on subcommittee number one so you can add his name to that and you can see the breakout of the responsibilities
I'm going to ask Representative Warren to head up subcommittee one as a legislator and Dr. Cloud if you would consider heading up subcommittee number two. Senator Irvin is chair of public health and so she's pretty tied up but she'll be interacting back and forth and then what I'll probably do is I'll pick one of the two to get on and what I'm going to do is ask ask Representative Dr. Cloud and Representative Warren to just coordinate through Carol getting
with the subcommittees and whether y'all do that by conference call or what works best because of the traveling logistics of everybody we'll work out those details to get started this the last thing that anybody questions
about that then the last thing is there's a letter that Dr. Smith has written and it is a formal request to the governor to help assist with the hundred seventy five thousand that has been mentioned throughout this
conversation in order to get the nurse hired which is a critical component to the success of this project because of the time that it takes and I think Dr. Panda and Dr. Rainey very experienced I think I heard the other day four hours prepping to see one client is that correct Dr. Rainey okay so it's pretty critical and what I want to do let you look at that later if you haven't had a chance and and so Dr. Smith I'm going to ask you kind of a tough question but the question needs to be asked 175,000 is kind of
small compared to the budgets that y'all deal with why do
we need to ask for this amount and why can't it be absorbed by UMS for children's I don't want you to speak on behalf of children's but speak on behalf of yourself or Dr. Sharp or
Speaker 16
47:28
somebody with children? I can tell you that I've been working for nine months to try to get this amount of money freed up, and I have not been able to do it, and I've been working there 40 years. So it's not, the budgets still are pretty tight, and it's hard for us to find the money.
And I think if you want this to move fast, we need to do it, especially the physician education. If you think the physician education is important,
Uh Rick
Unverified
47:55
such as what we call academic detailing, which is going out and talking to primary care physicians and pediatricians about this illness, we need some
Senator Kim Hammer
Unverified
48:03
money to do that. Anybody else want to weigh in as far as the reasoning? So what this letter basically does is this is from Dr. Smith on behalf of UMS. Am I phrasing that correctly? a formal request to request assistance in finding $175,000 in order to get the nurse,
and it's broken down as to what it would be used for so we can get this thing moving forward. Yes, sir. What I would like to ask in the form of a motion and a second discussion and vote of the advisory council is to express your agreement with the request so we can take your names, added to the list that we're going to present to officially ask for this money. So with that, I would just ask if there's a motion and a second to join in as an advisory
council to add our names to the request along with UMS and Dr. Smith to take to the governor. okay we got a motion from representative dr cloud and i think i heard matt say second but
Speaker 89
49:17
now we're open for discussion matt so i understand a hundred thousand will go to one fte that is exclusive to a nurse for this disorder is that correct yes sir and then seventy five thousand
dollars will go to education that's not necessarily an fte but expenses paid out it's part of it's it's some physician time
Speaker 97
49:37
to go to my guess is we will compensate them for going on saturdays and all to and travel money to be able to go out and give these talks uh and to do what we call academic detailing which is show up at somebody's office and um talk with them
Speaker 36
49:56
about it help them through that and make that happen and
Speaker 89
50:00
again not questioning but just trying to understand so who
okays that um the 70 75 000 and who says oh we're probably me i mean if i
Speaker 97
50:10
had to guess i mean it it could be dr sharp or you know but it's it's a uam dr sharps
Speaker 39
50:18
i think you're a uams you used to be a uams employee you may be a children's employee but it'll be
Speaker 89
50:26
one somebody like one of us Okay, and then I think this is it for me. Deliverables, evaluation, whatever it may be.
Who has oversight over that? Specifically meaning if we say, hey, we're seeing 100 patients a month, things are going great, we need to report that. Or if we're saying our waiting list is growing by 100 per month, we need more help. This $75,000 is not to see patients. No, I'm saying who has oversight over the operations and the nurse, the $100,000 FTE. Well, it would be the chancellor
Speaker 97
51:03
because all of us report to the chancellor at UAMS,
Speaker 101
51:09
and that's who's ultimately responsible. Okay. So I report to him through a variety of mechanisms. Okay. Thank you. any other discussion oh there you go can y'all hear
Speaker 139
51:30
me now um i just have a question as far as that's an insane amount of money for a nurse i mean i'm a nurse and so i feel like if y'all don't already have somebody in mind i'm not
like going out for the thing but i feel like you're going to be you know like bombarded with like just an insane amount of interviews so do you have somebody in mind like somebody that y'all already work closely with because I feel like you're gonna have to hire somebody to see
Uh Rick
Unverified
52:01
through the crazy amount of I think the we think the salary is somewhere between 60 and 70 thousand dollars a year okay and then UAMS has nearly a 25 percent fringe rate so that gets it up to close to a
Speaker 139
52:14
a hundred thousand dollars still and that's I just when I think about like you know as a nurse when you're looking at all the different jobs out there like what are the qualifications you're going to be looking for like is it set with experience in neuro or psych or so many years things to make because that's a substantial amount of money for a nurse and most UAMS I mean people don't especially the areas I know they don't have a high turnover but um you know kind of what do Y'all already know exactly what you're looking for and it's going to be a very special nurse
that fits this bill or are you
Uh Rick
Unverified
52:50
about to be bombarded with every nurse? I don't think we'll be bombarded. I think this nurse needs experience in neurology, needs experience in connective tissue disease, needs experience in psychiatry, and needs experience on dealing with families that are under a lot of pressure and also dealing with physicians who don't know anything about this, who, just like we heard a minute ago, want to say, no, I'm not interested in doing it,
especially the physicians that see the Medicaid patients because they get dinged for ordering expensive tests. So this was our best estimate. Yeah, I
Speaker 64
53:31
would also add to that that it's probably going to take a
Speaker 50
53:36
little bit to find the right individual, because this is not a new graduate from nursing school kind of position. Now, you would actually, with all the criteria that Dr. Smith just put on it, experience in all of those
Speaker 75
53:47
areas, that actually probably does not exist in the state of Arkansas. I mean, that would really be a very, that would be a real rarity if you
applied that in every area. You need to have someone who's had some experience in some of these areas and is really a very strong critical thinker because you're really asking them to contact a family, collect all this information, collate it, determine what's significant and what's not, and have a really significant amount of medical knowledge in order to do that. That enables then the physician to have a more concise report when they see the patient to be
able to see them more efficiently to avoid the four hours by two physicians to review one patient's records. Because almost all of these patients come with a significant amount of medical records. They've already been seen by other physicians, had labs, et cetera, and most have had extensive histories. So it's going to take a little while to find the right person. There are specialty nurses at Children's and the Neuroscience Clinic comparatively make a salary similar to what he's saying typically in the $60,000 to $70,000 range,
and then you have to add on their fringe benefits, you know, their insurance, everything that gets paid for a full-time employee.
Speaker 68
55:22
Yes, it is. Natalie. Just out of curiosity, so is
Speaker 16
55:29
this job already posted? No, ma'am, it's not. We just scrambled two part-time people this afternoon to make that
happen, and then we need to write the posting
Speaker 114
55:45
and post it. Any other questions? Yes, ma'am. Deborah? If this covers a year, what is the plan for
Uh Rick
Unverified
55:52
the years moving forward? After that, where's the money coming from? That's unknown. We thought that it would be It's taken some twists and turns between institutions and funding. We hope that the clinic revenue will create the margin that's necessary to be able to
do this. There's some difference of opinion about whether it takes a full-time nurse to do this or not, and those are in the eyes of very experienced people. And there's a disagreement, and I'll tell you, I don't know. I'm basing it only on what I'm told by the network that we're involved with that says it takes a full-time person. Okay. My concern is
Speaker 114
56:33
investing that much money and then coming up in a year from now and still kind of being at this, which way are we going?
Speaker 51
56:42
I think you have physicians that are engaged and want to see this as a successful
Speaker 75
56:48
project. Dr. Smith has been an extraordinarily strong advocate for this endeavor and probably will not let it drop, okay? So I think you've got an advocate at the table, and Dr. Rainey and Dr. Virpandian as well. So I think we can make it a successful venture. I'm the chief medical officer at Children's, but I'm also a child neurologist, so I have some expertise in this area.
I fully appreciate that there needs to be a full-time nurse to do this volume of work, even though it's only a one-day-a-week clinic. I think our nursing leaders at Children's don't necessarily see that. It's not their typical norm. They have a nurse to run a clinic that meets four days a week. So they don't really appreciate that, and I think we have to have some experience to show them and exhibit the volume of work that's required
before they more or less get it, if you will. And that's what we're trying to do is just get this initiated for a year, have it be a successful venture, and successfully take care of a good population of patients, and then I think we can convince people a little more easily. That's our goal. Any other discussion? these be
Senator Kim Hammer
Unverified
58:14
my comments and then no other discussion will take the vote remember
this is a request and so just because we request it doesn't mean necessarily that we'll get it but if we don't request it we're not going to have a chance of getting it number one number two with this dr. Smith
this is this is kind of forecasted on a year out enough to cover us for a year is that correct that's correct okay and so the thought behind it that i have is that if we if we don't
make this request and if it's not in your budget to find it we won't know a year from now what we will have and i think what probably will happen is as as the process plays out and physicians are educated and as the word spreads and as we continue to do the work that we do my personal opinion just knowing what what natalie works with i don't think there's going to be a problem keeping anybody busy my concern is that we'll have to come back in a year and ask for more
but i hope that in that year that with everything else we're doing with regards to the insurance companies stepping up and making their payments that it will create enough revenue to be self sufficient and sustaining i think that's going to be contributed part because we are about to find out as word gets out
how many people are actually dealing with this and my concern is going to be more about can you keep up than it is do you have enough help but if we don't take the first step in at least asking then i don't know what we can do moving forward it's going to be meaningful other
than get the insurance companies in here and and
continue that but this will be a good step going forward. Any, any other discussion or thoughts? And again remember this is just a request but you're adding weight to the request by your recommendation of voting for it. So any other discussion? Representative Warren, Co-Chair, you got any questions or comments? I
Representative Les Warren
Unverified
1:00:23
will just say that I appreciate this group coming together. I think our task
is to do our best to put this on the map and this is this is going to go the governor with Senator Hammer and myself pushing to make sure that the governor knows this is a serious need in our state so we want to see this issue attacked and help brought to a need. So like Senator said, you're putting your
names on it. It helps us when we go to the governor. We're going to put our best foot forward and see if we can't get the initial help we need.
Senator Kim Hammer
Unverified
1:01:19
So thank you. Any other discussion? We have a motion second to support UAMS's request for this, and I think we put in conjunction with the other entities that have been mentioned. So, all in favor say aye. Aye. Any opposed?
All right, we've already looked at the subcommittees. Just going to ask Representative Warren, Representative Cloud, we'll have some sidebar discussions to formally get that going. And it'll be essential, I think, for the education that we work closely with Children's and UAMS and the appropriate staff to make sure the proper information is being put out there. So that'll be our next task. The next meeting, what we'll do is we'll have the payers in here to involve them in discussion. And also, can you just real quickly tell us about
the Ryan Foundation and where we are with them
and any update on that
Speaker 16
1:02:11
you want to give? It's called the Pace Foundation. and Ryan is the founder of that. We're networked now in a consortium. Dr. Rainey and Dr. Arapandian went out last week, two weeks ago, to Tucson to meet with the consortium. It's the University of Arizona, UCLA, Stanford, Wisconsin. People were there from Mass General.
There will be a couple more on the East Coast, and maybe one at Emory. So we'll be a regional referral hub for that network. Okay. Any questions about the visit
Senator Kim Hammer
Unverified
1:02:53
to the Pace Foundation? All right. Any other matters come
Speaker 87
1:03:00
before us for now? Matt? Just to clarify, what's
Speaker 89
1:03:05
the timeline on the request, and then what does your fiscal budget look like?
What's the expectation? and if everything goes
Senator Kim Hammer
Unverified
1:03:13
perfect? I'll work with Representative Dr. Cloud and Senator Irving and Representative Warren. We'll respectfully work
it from both sides of the chamber to get some additional support. Now that you all have come out supporting this and we have some momentum going in, I mean, the request will be made pretty quick. The response is out of our control. But I think by the next meeting, we'd be able to hopefully be able to give you an answer. if we find out something sooner we'll let we'll let everybody know gotcha
any other questions all minds clear natalie i'm
Speaker 72
1:03:50
sorry this is going to show my legislative ignorance um but um i'm currently looking at a list of seven kids that have been denied ivig in the last three months um and that doesn't include the ones that i've been waiting for weeks and that doesn't include the medicaid that i don't even try to get approved because i know it's not reimbursable so just to make like next time when we come and sit down and we have the
payers in front of us that's when we will start moving forward with what they need from us to get coverage yes and i think
Senator Kim Hammer
Unverified
1:04:25
having what um dr raney has provided today and what we're getting from the pace foundation is going to
eliminate some of the excuses and i think that's where we go you know we go for the full court um the so i and and
here's the other thing i know spring break is coming up but i i'm going to ask carol to work with y'all
and send out an email and i realize
everybody's got to come in distances and that but i think this is pretty important to all of us in the room i'd like to try to get a meeting with the co-chairs agreement uh if we can get the date worked out for the week after spring break to get them in here sooner than later and keep the ball going and keep the press on. But we've got to respect Dr. Sharp, Dr. Cloud, Dr. Randy, Dr. Panda, you know, Natalie, everybody that's in the clinic. So that would be booked out two or three weeks to give you all time to work it into your schedule. But
I don't want to have a meeting two months from now. I'd rather
have a meeting about the week after spring break because I think we got momentum going. We need to keep it going. And the other thing, correct me if I'm
wrong. Once a commitment is made for 175, that's when Mr. Ryan and Pace Foundation will make a visit back
Speaker 97
1:05:41
to Arkansas. Am I correct on that? Senator, what they would come for is a grand
Speaker 16
1:05:47
opening at Children's Hospital. There's some scheduling issues. We need to make sure that the Children's Hospital leadership is
Speaker 97
1:05:52
available, that the governor is available, and that you and
representative Warren are available for that grand opening so that's a little bit of a scheduling issue that we have so we're gonna start anyway whether we have a grand opening is just for the is for the press and everybody to take credit for this and the committee to the committee to be there too so that's the only thing that we have that's standing in our way in terms of the pace foundation we're already participating fully with them so they're making all other information available to us and their support.
Senator Kim Hammer
Unverified
1:06:27
Anything else? All right, then. Thank you all for being here today. Meeting is adjourned. Thank you.
Agenda
A. Call to Order
B. Co-Chairmen Remarks
C. Consideration to Approve January 2, 2020, Meeting Minutes
D. Interdisciplinary Panel/Team Report
E. PANS/PANDAS Clinic --Rick Smith, M.D., Director, Psychiatric Research Institute, University of Arkansas for Medical Sciences
F. Arkansas Children’s Hospital/University of Arkansas for Medical Sciences $175,000 Funding Request Presentation and Justification
G. Subcommittees’ Memberships and Responsibilities
H. Other Business
I. Adjournment
Documents
| Title | Type | Pages | Source |
|---|---|---|---|
| Agenda — * ARKANSAS PANS/PANDAS ADVISORY COUNCIL, Mar 9, 2020 | Agenda | 1 | Official source ↗ |
| Exhibit-C Draft Minutes for 1-2-2020 | Exhibit | 3 | Official source ↗ |
| Exhibit-G Members' Subcommittee Preferences | Exhibit | 2 needs OCR | Official source ↗ |
| HANDOUT 1 Raney CPAE Clinic 3 9 20 | Exhibit | 22 needs OCR | Official source ↗ |
| HANDOUT 2 Smith UAMS letter 3 9 20 | Exhibit | 1 needs OCR | Official source ↗ |
| Minutes for 3-9-2020 APPROVED | Exhibit | 3 | Official source ↗ |
Speakers
Senator Kim Hammer
Unverified
Uh Rick
Unverified
Speaker 13
Speaker 15
Speaker 16
Speaker 28
Speaker 30
Speaker 33
Speaker 35
Speaker 40
Speaker 41
Speaker 43
Speaker 45
Speaker 38
Speaker 50
Speaker 54
Speaker 58
Representative Les Warren
Unverified
Speaker 64
Speaker 68
Speaker 71
Speaker 72
Speaker 51
Speaker 75
Speaker 26
Speaker 79
Speaker 12
Speaker 89
Speaker 90
Speaker 97
Speaker 104
Speaker 107
Representative Joe Cloud
Unverified
Speaker 111
Speaker 114
Speaker 119
Speaker 83
Speaker 113
Speaker 36
Speaker 39
Speaker 101
Speaker 139
Speaker 87