Begin by introducing your pages we have quite a few willies today but begin with Conner Bryon, Hosendo Pate, Warren Hardy Tender Jackson, Lil Waves, senator Davis, Mary Alison Paige any else on page? Through senator Krawiec, Eddy Lewis okay, Julian Van Jones, Senator Brock, Lavin Jackson, Senator Blue, Blake Fleischman, Senator Randoman[sp?] and Anderson Gover, Senator Davis. We check again for mayor's page and Edu Lewis. Our Sergent at arms to Barn hart, Markas Kits and Bale Hove thank you all today and Pages, I hope you have a wonderful week, I know we've got a lot of exciting things going this week, so it just keeps moving. So We have first of all announce SB 451 there is work to be done on developing the Committee Substitute for that bill, so we will not be hearing that bill in committee today, they spoke to the sponsors and it not just ready to go at this time, so we will begin discussions today with house bill and we have a PCS for this bill, do we have a motion Senator Robinson? moves for consideration of the PCS. All those in favor signify by saying Aye. Aye. Thank you. I can give you what they gave me. [xx] just a summary I think. Thank you Chairman Hise, and thank you Senators. What you've before you is the William C. Lindley, Jr. SUDEP Law. SUDEP is the leading cause of death in people with epilepsy, but it's one of the most mysterious afflictions that we know of. It's commonly the result of unknown causes, the medical examiners if there's a patient with epilepsy that has no apparent trauma, if it's an unattended death and there's no toxicological or physiological explanations if the patient does have a history of epilepsy they tend to dismiss it or put it down as sudden unexpected death in epilepsy. We know very little about this illness and what this bill tends to do is to try to move the ball forward and getting more information by requiring more of our medical examiners in North Carolina a little extra training on the nature of [xx] and the bill incorporates couple of other provisions for medical examiner community that requires regular annual training including training in sudden unexpected just in epilepsy and than also gives the achievement medical examiner the authority to replace a local medical examiner what they've been doing there job, so I will be happy to try answer any questions about this, it is a mysterious illness and it is a small step the first step in trying to get more information through the medical examiner's office through autopsy, to find out if there is way that we can come up with a cure, or a solutions, some answers to this all, thank you. thank, senator Wade. Thank you Mr. Chairman, I was reading the material here when it says 1/1000 people have epilepsy, is that correct? Or they die from this mysterious, have many people have epilepsy in the United States or in the world or North Carolina doing that? Thank you for the question senator Wade, I'm looking my notes here we go about 1/26 will develop epilepsy in their life, so if you want an actual I don't have that but whatever 1/26 is and real population present or is it 159 all of those will eventually perish of sue death but then the epilepsy community those without control procedures it is the leading cause of death, and
marks the epilepsy issue follow up, Go So my understanding that the medical examiners are possibly not physicians and haven't had the medical training in some smaller rural counties and they can even, they just have to find whoever they can find to be the medical examiner, so I'm just a little perplexed how you're going to give them training to find a disease that you don't even know if it's related to epilepsy when they die because there're people all over the world that die for unexplained reasons, so how do you know that they're just didn't died from unexplained reasons and had nothing to do with epilepsy? Good, thank you again for the question, that's the purpose of the bill's trying to get some answers, right now we have a very want, a derth of information about this and what we're trying to do is to get into our medical examiners community a little extra training, specific to epilepsy and stood up a very tragic [xx] where either through A little more precise care in the autopsy with a little knowledge about what Stood up does and how it affects epileptic patients that they can gather some more data that will help us understand maybe some other ancillary causes that are yet unknown. Just one more follow up. Follow up. I guess I am having trouble with just because you have epilepsy and die suddenly, does it mean it was related to the epilepsy at all?. People die all the time certainly is not related to it. So how would an autopsy without an expert looking at it and just whoever the County Medical Examiner is, I just don't understand how they're going to be qualified to make that decision, that's merely my point. How are you going to give a medical training before they do it? If you look at paragraph B in the bill it says, County Medical Examiner shall complete annual continuing education training that shall include training regarding sudden unexplained death in epilepsy as directed by the office of the Chief Medical Examiner and based on established and published guidelines and guidelines and then shall be published in any [xx] on the website. What we're trying to do is put some standards in place for the performance of autopsies by medical examiners to be considerate, that [xx] is a possible cause here, and then to look for some other factors that might be germane to diagnosing it. Just for clarification PCS is a bill requires continuing yet [xx] training no longer lists as specifically as annual training. No follow up I have senator Randleman, Senator Davis, Senator Robinson and then Senator Curtis and then Senator Tarte for questions, so, Senator Randleman. Thank you Mr Chair, mine is really not a question but as a parent of a child who's started having epileptic seizures when he was three. I'm very disappointed that the late legislation, he is now 42, do I go to sleep every night wondering if he is okay, yes I do, so, I will move for [xx] report at the appropriate time Mr. Chair. Senator Davis Thanks Mr. Chair. My question is [xx] require more training [xx] to this? No. Okay. Follow up. So we can do this with and existing training is that to my understanding? Yes, the bill did [xx] a preparation because there is no additional cost to medical examiner community they're going to be doing training and what we are asking for is just a little insert of [xx] training to go along with that and final follow up Ok, so absolutely spend a lot of time in here especially in the interim part of the session here talking about the training, so what you're proposing here is simply add kind of a segment to to an added training, [xx] a training block to the training that we're already pushing for. Yes. Senator Robinson. Thank you Mr. Chair and I want to sort of echo senator Rabon and say I had a brother for suffered for long years year and dear-dial of "Epileptic seizure". I don't know really what are the causes, so this is important, the question I do have though is on C it says the medical examiner may revoke a counter medical will examine this appointment for failure to adequately perform their duties. What would constitute a decision that this person didn't do? Now, we are saying that these folks are not trained yet.
Most and many of them and they're not medical [xx] so does that mean if the person found out later the person had epilepsy or something, their licences could be to an added training, [xx] a training block to the training that we're already pushing for. Yes. retain they don't have it and we know the issues we have had with trying to get medical examiners and then the person without adequate training misdiagnosis or what ever does that mean that the lives and sickness can be revoked I mean what are the conditions here? Thank you for the question very good question and I'm going to ask first some help with the staff because this gets in to the whole licensing board issues as to over set that they have over different professions. Mrs [xx] Yes [xx] history has been through a lot so self section c says the chief medical examiner may revoke a county medical examiners appointment for faillior to adequately perform the duties of the office after providing the county medical examiner with written notice of the basis for the revocation and an opportunity to respond so this sub section does not directly related to the meaning it is related to the overall performance of duties, I don't think that this is uncommon to what you find in most jobs that, it would just provide that the chief medical examiner has to provide the county medical examiner with written notice, and then the county man equip medical examination has a opportunity to respond. Just follow Ms. [xx], I just want to make sure that we aren't saying here that this would be one of those causes, because I'm not sure we have the evidences there in terms of what their training is and, that person is certified in perform or giving appropriate diagnosis, I want to make sure that this does not continue in India. Thank you, Senator and thank you Ms. [xx] for the very good response, it's not designed to be anything special to suit up and if you miss something as a county medical examiner then you are out, it simply deals with overall performance of an individual within that office as is done in other licensing board, thank you. Senator Curtis if a person with epilepsy dies suddenly is autopsy always done? lean on staff again for that. I don't think that's the case but I don't know for sure so most of my information on the issue comes from [xx] institute and these I will reduce some information from their website and this may also answer some of the questions that we heard earlier the person with epilepsy is often found dead in bed and doesn't appear to have had a compulsive seizure, about a third of them do show evidence of a seizure close to a time death they are found lying down face down and no one sure about the cause of death some researchers think that a segue causes an irregular [xx] with them while recent studies have suggested that the person may suffocate from impaired breathing fluid in the lungs are being faced down on the bedding, so what I gather the intent of the bill isn't certainly the sponsor can speak to that is to put a little more effort into the investigation when someone dies that has a history of seizures so that we can begun to accumulate data and data hormone if this is a Sudafed related death or not. Senator Todd. Thank you Mr. Chair and I don't know what the question has in this, but it destructs me as being and I'm not a physician obviously you know I've lived upon for 36 years in a Paediatrician at is and taking to several medical examiners as we've looked at their office this would be interesting thing to ask or put to Dr. Alish or dr.comings in the office and know items in the audience but I think Sudafed is very similar to seed sand I think we are mixing the terms which we need to be very careful of saying cause death, it's not a cause I don't believe it's a category and even now it's unexpected it ties back into and is unexplained they don't know why that person as to way unexpectedly so it's not the cause of the death it's a category and basically saying we don't have clue why and that's potentially why doing this and making it aware for the medical examiners and that would be my question I guess does their ability to identify this as a category non necessary caused allow us and
brings it to the forefront that all those cases need to have an autopsy so we can start correcting the data, do the research to determine to try to get at the actual cause that we can explain and I don't know we have anybody here able, but does that requirement for an autopsy allow us to do the necessary research to potentially find cures or solutions? thank you Senator Ralph for the question, a very good question Sudip[sp? [ is a very broad category and you mentioned it in relation to the Sudden infant Death syndrome. There are actually more fatalities annually due to what we call Sudip[sp?] than there are SIDS but Sudip[sp?] is still bailed in a very large cloud is to what causes it so this is the first step of trying to charge our medical examiners with the responsibility of being aware that this is a possible cause of death if you have a patient with a history of epilepsy. It's too late for that patient and for their grieving family. But if we can through postmortem autopsy glean some information the condition of the brain or an Arrhythmia within the heart or something like that, that that loses further down in the road of understanding. Right now we just luck understanding, what Miss Matilda said is very true, some people think it's a breathing problem that something just does not trigger in the brain properly during a seizure and breathing stops. Kind of like sleep athnia is considered to be a heart issue that there is some kind of Arrhythmia within the heart, we just don't know. So what we're trying to do is take one is small step on charging a medical examiner community to be more aware that when you're doing postmortem of a epileptic patient that certain unexpected deaths in epilepsy may the because, and let's try to start collecting more data and be aware of that there're just the whole idea just giving more training to a medical examiner community to begin is a good idea because that is what in our state and then to add this little insert about epilepsy is to try to deal with a situation that has tremendously tragic consequences. I just learned about a young lady in Alamance County light in May and the cause was determined to be SUDEP, and for the parents that's just, they still have more questions, almost that they had previous, so we're just trying to move the ball forward a little bit, but I thank you for the questions. Thank you. We've gone through the list, we're starting to make a take around through that was coming in we will go back to senator Ranamon and then we have senator Davis. I just want tell of one advert that we encountered and this may put things in perspective. When my son was 21 he went to caravan just like all young people do. He made it through the gate before he had the seizure, so of cource by sticking to the in care there at the care wings I drove down, when I walked in and he was conscious he went back to sleep or in a sleep state at seven o'clock that night this was 12 he had seizure at 10 seven o'clock that night they finally decide to call in a neurologist because he is still unconscious they have him hooked up to every device that you can possibly hook a child too so when the neurologist comes he goes over and he starts talking to my son and he ask him little simple questions and my son who was in an unconscious state, he could answer any of the questions. I live in Wilkes County, you have no folks but Willsborough by asking id he knew where he was he said willsbrough the neurologist said no, try again he said willlsbrough so his brain was functioning second answered those questions even to that extent. The neurologist had asked me before he asked the question. He said, do you think he's having seizures now? I said possibly, so after the neurologist did their assertion question they come back to me ask do you think seizures now he said possibly so it's hard to tell when they go into a [xx] for those that go into this long period of unconsciousness that is when it can be deadly so, he had experience we knew all that day but he never regain consciousness till 3 O'clock the next morning, so prepare to deal with this it is major and I appreciate your efforts in trying to bring this into the attention of the general assembly and to the public thank you, Senator Davis Thanks Mr. Chair, think it was stated earlier I hadn't
seen doctor Riley [xx] could we I'm from doctor sent a set of question or something. Lets speak, I didn't see Madam Chair, think we called doctor Adam earlier [xx] whose experiment has in if that will be fine. No, I just wanted to say doctor [xx] is not here this morning but I'm just generally on the bill under the certain sector in from the Chief Medical Examiner's Office starting with government budget we put all the support to the generals assembly, there is a post to develop training, to make it a requirement for medical examiners to better educate the state wise medical examiner system and I think incorporating this into the training that was developing and responding for the budget to be done right and medically appropriate, can I answer a lot of questions have been falling around and need to be done by the experts now officer. Senator Wade. Since the great question, I don't think there is any problem with the need for it, is just I'm trying to figure out the protocol of what they're going to do, You've got a person that is not medically trained possibly, they are doing an autopsy so they think, I guess there was suffocation or something like that, did they call an expert in? Did they take tissues? What is the protocol, how do we learn more other than somebody saying, yes they might have suffocated, and he's not really trained, so what happens, that is what I'm trying to find out. Thank you Senator Wade, we work towards in the future adding to this bill requiring a little bit more data collection or deeper tissue examinations things like, that's not in this bill, this bill is simply to get the training done first and the awareness out there, and then to move forward subsequent of this. That's why I guess I'm trying to figure out what is the training, I mean, you just tell them to look to see if it's a repository problem or they think it's the heart problem, but they're looking for that anyway, right? I'll be pretty back again to the Bill, it's after that says the Chief Medical Examiner will make the requirements based on established and published guidelines within their position, I don't know what they are, and I'm not going to dictate to them what they should be I'll rely upon them and their professional ability. Members of the committee we do have one other Bill we're trying to get I would, if someone will bring out if they've any actual opposition to the Bill maybe that will be useful in the process rather than the discussion, but I will continue. Senator Tarte. Just one last comment, just as a clarification I'm not trying to speak for the department just a clarification medical examiners I believe would not be doing any of the pathology and would not be doing into the autopsy that just being able to recognize it to refer it because the forensic pathologist would be the MDs doing the autopsy to determine thank you. Seeing no other questions Senator Randleman has moved for a favorable the bill, unfavorable to the original bill, favorable to the PCS for the bill, any other comments? Hearing non all those in favor the PCS please signify by saying aye, Aye. Opposed thank you. I appreciate it. [xx] will carry it on the floor, thank you. OK, next we have House bill 823 establish advisory council on rare diseases. There is a PCS to the bill it's coming up. Do we have a motion, Senator Robinson moves for consideration of the PCS all those in favor say aye. Aye. The PCS is before you, thank you. [xx] Thank you Mr. Chairman and members of the committee the bill before you is different from what it was in the house we have worked very hard from the time it passed the house came to the health committee and I appreciate Senator Pate help on moving this bill forward and putting the people together at the table the bill started out and if you have seen the original bill it started out with this rare dissipating the people together at the table is an advisory board being housed in DHHS and after we put all the people at the table we determine the better out for this would be to have a house that you would not see which is a research university within that the stay, just a little bit of the background on these rare disease that the advisory board
called for I was contacted by a mother in Mecklenburg county who has a daughter named Taylor and Taylor now has in her honor a Taylors Tale rare disease foundation that her mother has been tirelessly working with Nationally and Tyler was diagnosed with Buttons disease when she was seven, she is 16 now, she's blind, incapacitated and her family has gone through an enormous expense to care for their daughter. We had a breakfast here that was hosted by Senator Pate and myself right after session opened and we had two presenters there, one was Jude Samulski from the UNC Gene Therapy Centre and his real impact that day was he looked at everybody at the breakfast stand and the legislative cafeteria and he said, "If you think you make a difference, and he put up a side of an iron lung[sp?] so if we go back that far a foot research can do for rare diseases it marks, so I'm asking you today to please report the staff from going forward this board will be house at UNC it will be there is no appropriations for UNC has agreed to cover the expense involved for this commission, so I'm going to hold any further comments and would take questions. Senator Platt. I would like to thank representative canny for her passion on this and see into that we did all the due diligent said was necessary to get this bill where it is today and I certainly want to thank her for doing that and Rep. Canny if I might there is one person in the audience who is a sufferer from a rare disease he has had it in his past passed and he is the former Attorney General and one-time Secretary of State Rufus Edmisten and Mr. Chair if you would allow Mr. Ednernsion to speak I believe that would enlighten as at this time. Mr. Edernson? If you would like to make comments that would be fine. I know that people like say they did expect, but I didn't, but you know me I'm very norvous about things like these but let me tell you what this means to me. There is this lady back here named Sharon who is the mother of that beautiful child I've seen pictures and what she and the girl those are indescribable, you just described all those, various phases of epilepsy, what you've suffered, your family suffered maybe this rare disease, advisory board will do something about it. Let me tell you about mine. It will be eight years ago, last August this strapping big boy who had been elected 11 times statewide only lost once. It was a bad year for governor that year in 84. I visited someone over at Chapel Hill and came back and tried to climb the stairs in my law office, I got to the top and fell like, please excuse this analogy. I fell like like a shot dog as we sometimes say in the mountains, and I couldn't move and I asked this very serious question, I said to my law partner, did we drink so much last night? And he said well no we didn't. I said we thank God and picked it was very bad wrong and they took me to my doctor who I call the gorilla doctor because he set up an office in a little former service station, but he's a miracle man. I somehow got myself down there and he he said, "Step up on the stool!" I fell backward like a lump of sugar, totally lifeless. He said, "We're getting you a direct hospital. " they rushed me over there, where a lady said, you have Deonbarre Syndrome, well you could have said to me that I had Ebola or had some of the worse step in the world and it meant nothing, I was totally paralyzed and they began a seven-day regiment of some the thing that was close to Sen. Page cost
a $100 thousand for seven gallons of it and said I wanted to take some of them home with me and then I spend three months in Rex doing rehabilitation learning to talk again and I had a lot of folks who email me and said Rufas we are not sure we want that cure, I'm at face of it, I barely escaped resptorial failure, and I had to learn to talk to walk I remember taking my first step with people with ropes from one side, and robes and the other side, and we were keeping this secret because everybody in the world were making up tales about Griffith lost both his legs and his mind and everything else and it turned out to be something they know nothing about how it comes about, and you mentioned a moment ago the rarity about what causes epilepsy, those things, we don't know what causes the Guillain-Barré syndrome. Andy Griffith had it for two years and did not know what it was and suffered tremendously. So what we're trying to do here is simply say let's let North Carolina be the leader. Let's try to get the heart of some of these, it works in perfectly to what you were talking about a moment ago with the diagnosed with epilepsy, and we're trying to judge anybody anything, we just got a lot of people, the people on this committee are chosen experts and I'm convinced representative Courtney they will come to meetings, I've served on committee after committee after committee where nobody shows up, while I think these people n ow recommend Representative Corney, Representative, the other folks in the house, [xx] is talking the seven times sent to [xx] and especially this lovely lady here named Sharon, what's your last name Sharon? Shem. Shem King who decided I wanted to do something to help my daughter and people like her, so I urge you to pass it and I'm thankful that I come back over here recovered. Thank you very much senator. Any other questions [xx] to the bill. Senator Jim Davis? Thank you Mr. Chairman. My question does not have to do with the value of looking into this, it has to do with the protocol involved, I understand that NIH has a rare disease component to that. I also understand that They gave like about $48 million grant last year, last July, to about six national universities, studying obscure and rare diseases and one of the grand recipients was Duke University school medicine. So my question to you is how is this advisory committee being housed in chapel hill going to interface with Duke, and with inner it regarding this issue? And thank you for the question senator. Duke will be very much involved, they will have an appointment on this advisory council. They have certainly been in the forefront on the research end of this and the nationals will be involved too. This is our foundation that this bill will start from North Carolina and at the end of this year, they will come back and report to the governor. I try to the joint legislative health and human services oversight committee with recommendations that we can build on as we get forward, and we don't want anybody left out. We had at that breakfast a specs person from John Stenhouse, CEO of [xx], and they already have drugs in the pipeline, and they very much have already started collaboration between our research universities here in the state [xx], and the biotech industry. That's just another appendage of where we can go with this, I do want to let you know that North Carolina has an opportunity to be the very first state to take the step, they're about nine other states that are looking at legislation, they have it drafted, Wrode Allan is about to pull the trigger on theirs, I'm just happy that North Carolina can be first our neighbors in South Carolina are looking at what we do with this next I do think it's a real turning point for us with our research within the medical field after North Carolina to be at the top so we aren't going to live anybody out as we go along. Senators for technical re sponsors will a line 28 and 29
this will a representative from each institution that receives any grand funding for rare diseases thanks for coming in so any of those grand recipients who would now be members of he advisory, senator, I guess one question would be has this been vetted and discussed with Doctor Loper at all does he have any insight or input to this? Yes it has been fully vetted that's why we've been working on Senator Robinson at the appropriate time I move a favorable report. I think it's the appropriate time so Senator Robinson will move on the bill for unfavorable to the original bill favorable to the proposed committee substitute any other comments? Hearing none all those in favor please signify by saying aye, aye opposed no. The aye's have it thank you members of the committee we have exhausted the agenda now we will stand adjourned. Thank you Mr Chairman.