Health in order, run a few pages with us today if you could just stand, give us a little way when your name is called and we apologize for any butchering of names ahead of time. A groogler sponsored by Representative Lee Zachary, Tim Mantig sponsored by Representative Rosa Gill, Tena Morrisons sponsored by Danny Lamberth, Klye Coobith sponsored by Representative Jammy and Ali Reed sponsored by Representative Allen MCneil. Our sergeant at arms today Mr. Young Bay, Mr. Bill Maurice, Mr. Jim Meran and Mr. Joe Cook. we have a couple of bills before us this morning members. We will go ahead if it's ok with our senate member and start with senator Tillman's bill, senate bill seven senator if you will like to proceed with presenting your bill, we will move forward, members there is a PCS on this bill, if I could have a motion to accept the PCS before us you are free to present your bill senator. Thank you Mr. Chairman, the bill prior to the PCS was to allow customers, so to sit down if you're in a minimal convenient store, and you want sell us a biscuit and cup of coffee, guess what you can have one when you stand up. Lovely people are old and retired and it's a social center for the morning, they want to have two cups of coffee ad they want to sit down and the health department has some notion if you sat down you'll use a bathroom more and overflow the septic system, and then the owner will have to go and his own system at his own expense and so forth and we said no, the health department, you need to let these people sit down and if they do got to the bathroom and more than once and it does have a fuzzy system then you tell us that and you prove that and then you close them down. So that's basically what that and the PCS, I'm going to ask the staff to explain that one for me. Mr. Chairman, I'll let you ask them, Mr. Chairman Yes sir. The addition, second part. Yes sir, members of the committee the second portion or section two of the now PSC or Senate Bill Seven adds in the language that was contained in Senate Bill 363 which also had a companion House Bill 440 and Section two of that allows push carts and mobile food units to prepare and serve food on the premises provided they're based from a permitted commissary or restaurant that is located on the premises of a facility containing at least 3000 permanent seats. You can see both in the bill and the bullet points in the bill's summary that there're some additional requirements with regards to serving raw meat with regards to open food and utensils, and food equipment and supplies, the effective date of section one which as Senator Tillman explained, is October the 1st, and the remainder of the bill will be effective when it becomes law. You will see in the summary there are number of different ways to serve food in North Carolina and under the current law, we have the definitions most which are the final rules for food establishment, food stand, marble food units pushcarts etcetera if you need to refer this definition I'll be happy to answer your questions. Thank you senator any additional comments? One example if you like at the Durham ball and they have the restaurant on their privacies layer therefore have a pushcart so a lot of businesses want this as an additional service to the patriots, to fans and so for if you allow the quick number to own the push card if they have already permitted to do so in the restaurant that's what basically what this does and they have asked me to attach this and I'm perfectly fine with it. Representative Dollar. And this were more for staff, my couple of questions the pushcart how can they have, I guess you can, how can they have hand washing sinks is it something that I have now or(xx) Representative Dourghal it is my understanding that will have nothing that they may have a mobile or small hand washing unit on it, Larry Michael may be here from public health DHHS and he may be able to expand a little bit more on the design of a [xx] Mr. Michael if you'll step to the mike and state your name who you are with for the record, push the button, if you will Illuminate the light, Thank you Mr. Chair I'm learning I'm Larry Michael section chief with the division of public health and just to answer your question
push caps the designer of push caps has changed to [xx] over the years, so that they are frequently made with the hand wash thing now that has a tank that can be emptied and disposed in a proper sewer Mr. Chairman let me ask a broader question and you may probably end up responding but I will start with staff and that is always wondered about the rule of an attaining consequences are we in any way if this bill were to pass more concerned about section two, are we in anyway restricting people who drive around with mobile food units now I was [xx] nursery two weeks ago a week ago and someone had a mobile hot dog stand feeding some staff out of a sand they people set up tako[sp?] stands and this kind of thing is this in any way restricting commerce as we currently know it today or is this allowing something to happen, Rep. Dollar I think the intent of section two is to expand food service to and make it more convenient for customers. I don't think that it is restricting but again Larry maybe to able way in on his opinion and whether there are any food safety issues or restrictions or limitations Mr. Michael if you could again for the record state your name and who you are. Yes Mr Chair Larry Micheal section Chief with the division of Public Health and Representative Dollars it's the mobile food in it is a different type of food establishment, based on the rules and there's different standards of the changes within this section two will not have an impact on mobile food units, or food trucks as they are commonly known. Representative Dollar, Just a follow up, so there is nothing in this bill and in each either part that would be restrictive over and above what the whole variety of how people go out and do their the official businesses in terms of selling food, is that accurate? Mr. Michael. Yes sir, that's accurate. more follow up question. Representative Dollar. In the first section when it says not more than eight seats for customers I know for example there's a hot dog stand that is out of state fair of the year has 10 seats. They would not be they will not be affected by this I assume? Mr. Michael. No sir they will not be affected by these. Representative Representative [xx]. To be recognized for a motion at the appropriate time. Are there any further questions from the committee? representative Arthur looks like that time there's a referral to commercial job development Thank you Mr Chairman I believe the favourable report to PCS senate bill seven all in favorable to the original with referral to the finance.commerce and job development. Members you've heard the motion before you all favor say aye. Aye. All opposed no. Congratulations senator, your bill passes. Up next senator Bingham and senate bill 286. Senator you're free to explain your bill. Thank you Mr. Chairman ladies and gentleman of the house this bill initially I had met with the lobbies from R. J. Reynolds who we already know, and the Chaff Tally Task Force of Eight Council of LayLords and we have come to make con-censors is no this bill I know of no objection what this bill basically does it requires child resistant packages this packages have nicotine they are poisonous and hazardous to the children the addictive etcetera and the violator will be charged with an A1 misdemeanor and also the violator will also be liable for damages to the injured party of the child's family task force became very interested in this because there was no the FDA did had no commerce on child
resistance packaging on this product and we all know the dangers of nicotine and it can be absorbed through this can and even deadly to small children. So that was a genesis of this and I would urge your support, Mr Chairman and the members of the committee Thank you senator Representative Connie Thank you Mr Chairman at the appropriate for your time for a motion. Any further questions from the committee? Representative Connie you're free to make your motion, there is a referral to commerce and job development. Question of the chairman. Sure. That it did have a physical note with this, is that right? I'm I looking at the wrong yeah does it need to go to finance also? There is a incarceration note with it. Okay, well with that I move that we give senate bill 286 a favorable report with referral to commerce and job development. Members you've heard the motion before you, all in favor say Aye, Aye. All opposed No and the bill passes. Thank you Senator. Thank you Mr. Chairman, ladies and gentlemen of the house. Thank you very much. Okay. Members, we're back to House Bill House Bill 698, Representative Geda, you're welcomed to present your bill. There's a PCS to have a motion to bring that before us Representative Geda, you're free to present your bill. Thank you Mr. Chairman, Members of the Committee. House Bill 698 is the Baby Carly Bill, this is the bill that addresses severe combined Immunodeficiency Disorder which is so often known as the Bubble Boy disease this is doing predominantly two things. It is setting up the implementation of the machinery which was purchased the grant, the $466, 000 appropriation that is in this bill is for the implementation for the machinery for the state lab has already received a grant for the actual machine itself and then second day early there's a a dollar fee which spoke into the hospital association and all interested parties they've all agreed to it there's no proposition and the 466 was already referenced in the budget or as part of the pending legislation this's one of the smallest items in that category happening answering questions but we do have baby Curl's mother and Dr. Barkley from J crew I think are instrumental on this you've better reason and myself bt I yield to the chairman's discretion. Thank you representative Jitter and members we're going to allow Miss Stephanie Neugene and as well as Rebecca Barkley to speak. Miss Neugene if you'll like to step to the microphone and state your name for the recored you can address the committee. Thank you, I'm Stephanie Neugene I'm Carly's mum, as Carly's mum, I'm on first hand how important it is to test for skid at birth [xx] what's my born child and on February 23rd of 2000 at seven months of age I held her in my arms, I watched helplessly as her heart beat faded, I felt ther warm leaving her body when I kissed her for the last time. Six weeks bare to that Carly had been diagnosed with skid, she seem perfectly healthy when she was born she had no visible signs of illness all of this symptoms that she presented were common illnesses that any infant can have especially in the middle of winter you are talking of ill infections bronchitis Limonia, things that you normally see in a baby, they were all dismissed, no one concerned about it, it was frustrating for me we spent multiple times in the doctors office more than once a week sometimes more than one is in the same day, by the time Carly was diagnosed and under the care of Dr. Barkley it was too late 20 days after I gave her my bone marrow, the bacteria and the viruses had overcome her body and she couldn't fight them. I will forever be haunted by knowing that a simple blood test at birth is all that stood in the way of watching her grow up. When babies are born with good time and is not on their side, it's important that we understand that. It was had enough for
me to watch Curlys' health decline but you couple that with knowing that an inexpensive blood test, a test that costs less than what you pay for your lunch, and a fraction more than what you would spend in a fancy cup of coffee and their are just no words to describe what that does to a person. I am here today honor Curly's memory and hope of giving North Carolina babies a chance to live. I won't be able to comprehend it if you don't agree so I hope you do agree that all infants should be tested at birth for skid and given a chance to live, you hold the power in your hands today it will give a happy ending for other North Carolina families, I hope and pray you will say yes to the baby Carly Newjen bill thank you. Thank you Mr. Newjen and on behalf of our entire committee we are extremely sorry for your loss and thank you for your strength this morning and presenting to the committee. Mrs. Barkley if you would step to the microphone and also state your name and who you are with for the record. My name is Doctor Rebecca Barkley and I'm a professor in pediatrics and immunology Duke university medical center and I was baby Carly's doctor. I have been transplanting skin babies for over three decades now and at Duke University we are transplanting babies with skid that any other center in the world and we have the highest survival rate center in the world, but the thing that was most compelling from the data that we accumulated was that if you can transplant before a baby is three and a half months of age then you have a 93% survival rate. If you transplant when they present at six or seven months like Carly did the chances of surviving are around 69% but if you don't transplant it all it's fatal before your first birthday, but the treatment is very effective if it can be given before the child develops serious infections of the type of the curly head and the treatment is much more effective than it is for many of the diseases that are currently being screened for a newborn screening is also more common than we previously thought there are now 29 states in the US that are screening for this condition and the article published last summer for Angina where 11 said its contributed all their data. It was found and there were 3 million babies screened at that point, we found that the incidence is one in 58, 000 before that it had been considered to be much more rare but this is primarily because babies die of pneumonia or meningitis or bloodstream infection and they were never diagnosed was scary. In January 2010 the secretary advisory committee of heritable disorders of newborns and children unanimously approved the additional scare to the recommended uniform screening panel, and this was approved by the secretary of HHS in May of 2010. As a result before your term on this committee and in January of 2011 the North Carolina Newborn Screening Committee approved the addition of skewered to the North Carolina newborn screening panel with the understanding that this would not be started until the new public health building open. Well that opening was delayed for some 10 months, but when the building opened in January of 2012, there was still no plan to start this and then we found that the major obstacle to initiating this, is the addition of a $5 fee to to the current $19 fee that is being charged mothers and fathers when they have a new baby. Now this fee is a sixth lowest in the nation and there're fees where some states charge as high as $157 per baby. So, this fee is already very low and the addition of $5 is certainly more than worth it to save lives. So over the past five years since the secretary of HHS approved human screening for scid, I have transplanted 11 infants with scid four of him we born in North Carolina. All were diagnosed late and were very sick at presentation. The overall cost in North Carolina medicaid retrieving the three medicaid babies was 10 million dollars and contrast and then the cost of the other baby to the private insurance was 4 million dollars. Contrast this with the average cost of transplanting a healthy baby was cured, diagnosed
at birth which is less than $100, 000 thus North Carolina could have set up this kids screening 10 times over for the cost it has paid for the medical treatment of this very sick babies. Thank you very much. Thank you Dr. Barkley Representative Brawley For a motion Mr. Chairman. If you can hold that motion briefly, Representative Brawley Representative Pendleton. Mr. Chairman, can I address the position. Dr. Barkley, would you return to the mic for a quick question. Thank you. I've never heard of this condition and thank you for all you've doing in this are but what is a transplant? What is a transplant? Is currently bone marrow and we tried to use a matched sibling if we have one if not we've been using half matched mothers and fathers for the last 30 years I do and we can do this by modifying the procedure but the answer is usually there's always a donor, now in the future gene therapy may be something that can do done for this babies right now most babies are given a bone marrow transplant. Follow up. Chairman Jones. Thank you Mr. Chairman. I also have a question for the physician if you will [xx] an immune deficiency disease and obviously there are other immune deficiency as well my question just has to do with the screening and the testing when that is done is it extremely specific? For skid or would it be helpful in other way identifying any other possible Immuno deficiency disorders? That's a very good question this screening test is for T cells lymphopenia now I know that sounds like Greek to probably most of you but this syndrome is characterized by the absence of T cells. T cells are orchestra leaders of our immune system. If you don't have T cells you can't live and there are other conditions besides skid that have T cells for example DiGeorge syndrome is one and we're already picking up other conditions that we didn't know existed and this is summarized very nicely in the JAMA article that was published last summer about [xx]. Thank you. Members, any further questions? Seeing none, representative Brawley you are free to make your motion. Thank you Mr. Chairman. This one so obvious, move a favourable report to the proposed committee substitute for House Bill 698, the serial referral to finance in favorable to appropriations, unfavourable to the original bill. Members, you've heard the motion before you. All in favor, say aye! Aye! All oppose, no! The bill passes. Congratulations representative Jitter with no further business to this committee, we're adjourned.