here is the point. it as more thans, if something is a priority like national security after 9/11. we find a solution, or we make one. here is the crisis. thousand black, men, and boys and many other americans die ever year and evidence in our

country and virtually nothing happens. no sustained comprehensive action is taken. but it is happening and it does every day. illegal guns are the weapons of mass destruction on our streets. we experience as one of any fellow mayors has said has murder once by one by one in slow motion every single day in the united states of america. and so i ask the question, where is our right red line on violation -- violence in america? 10,000 plus murdered americans every year. that is a crime against humidity. we have a civil war unfolding in our cities every day, week,

every month. mary landrieu and i have both have spoken with president obama on this issue. he is ready to act. the question is where is the congress? what are they prepared to do? so let me ask this question, what if our response to domestic terrorism was as thorough and engaged as our response to international terrorism? what if we had a 9/11 commission about black men getting slaughtered on the streets of america? a national commission on domestic terrorism, violence and crime in america. to exam the root cause of this violence? find solutions and make recommendations for what governments at all levels can do to reduce domestic terrorism, violence, and crime in america. from the 9/11 commission, we created the t sergeant a, the transportation security administration. now maybe we need the wa

sergeant a. the walking around security administration. this is serious. because we have a violence problem in america. >> this is another way the federal government can help reduce gun violence in america. you have to hit the street. democrats, republicans, congress, and president obama lock hands and launch a strong more targeted cop program to put more cop on the beat. justice like congress and president clinton did in the 1990s. congress has money. in fact, according to the governmental accountability office from 2009 to 2011, nearly $14 billion was spent by the united states government building, hiring, training, and equipping police department inspect $14 billion wasn't spent in new orleans, philadelphia, or chicago even though we're

fighting the good fight again violence crime on what amounts to a shoe string budget. it to bill police department for the people of afghanistan, iraq, pakistan, mexico, and columbia. we need to redirect those resource wack to the home front. we need congress to treat fighting murder and violent crime as national priority. further more, we need to do something about criminals with illegal gun. i support the second amendment and the genius of our constitution it greats a strong balance in every right. crime and yelling fire in a youd movie theater. common sense solutions can be found that strike this plan and stay true to the original intent. there is demon ground on this issue. i would give you one example.

everyone can agree what we should do to get guns out of the hands of dangerous criminal. here is one specific way we can do it. over thirty years ago, congress authorized them to target drug dealer as a part of a war on drugs. we should do the same with violent gun offenders make it a federal priority. let give them clear, concurrent jurisdiction over all violent offense committed by firearm that travel in interstate customer. let wring the hand down on the criminals. >> on these big issues, these major issues of the day, mary landrieu and i cannot look away. we won't be quiet. americans tackle problemses. we fibbing them. put our hand to the plow and find way to make life better. so we started to do the research and got others involved to

answer the question. what is happening in our streets and why? what we found was that murder, of course, is not justice a philadelphia issue. it's not just a new orleans issue. it's a national issue that deserves a national conversation and national action. in america, young black men are being slaughtered. we need everyone on board to find solution. so we have brought together our federal and state partners, mayorer from as cross the country and philanthropy leaders to establish cities united. a new initiative specifically aimed at finding ways to stop the murder of young african-american men and boys. now cities united seeks to create an urgency, dispel myths, unpack the reality, and name the challenge. as a part of this effort, we in philadelphia have taken practical steps to reduce violent vim -- crime and inured my city. first, as mayor landrieu said,

we have to do something about illegal guns. as i often say to the guys on the street with illegal guns, got a gun? go to jail. not talking about legally purchased gun people use for preace or other legal purpose. we're targeting implement the law legal guns bought by straw purchasers and used by criminal to reek havoc in our city. we reach out in the operation pressure point which detail the police officer and other law enforcement per tell me to crime high spot. take the fight to the street coacher. further more, working closely with business owners to register outdoor video surveillance camera. they can get there quickly, take down the criminal. third we're reaching out. try to stop violence before it starts. a variety of stakeholders across the city to help on the front line confronting and preventing

violence. we're making some progress. i can report to you today this year in philadelphia, murder is down nearly 30% and shootings are down over 16% compared to the same time l.a. year. our progress is promising. but as mentioned, it is a drop in the bucket geb the tidal wave. one murder or shooting must be unacceptable. if you really unthis problem, you can see that no law, no rule, or regulation alone is going fundamentally change the culture of death on the street of america. government on it best day can never replace a family. the government must invest in communities so family can thrive and children can have a change. we need safe streets, more job, better school. it won't matter without personal

responsibility. babies having babies doesn't work. the point is government can't solve all of the problem. we need to take care of our own business. this means pastors, teachers, coaches, neighborhood and friends. we each have a big role to play. there is no excuse. we have quit wait and start doing. we may not be at fault. but we are all responsible. as mayor of major american city, government close toast the ground. we are called upon to do the hard work of governing. it is where it must be deep, ambition must meet human frailty. s a per ration crash again the rock of reality and hope hit the street. real time, real challenges, real life, real death. we're the one that get the call to go to the crime scene after the murder. we get the call when the police officer gets shot.

we get the e-mail day in and day out that tell the same story, mr. mayor, i'm sorry to inform you that last night shots rang out in the middle of the night. we arrived and found a young african-american man face down three bullet holes in the head. there are no witnesses. we're the ones that go to the funeral they lay to rest a 1-year-old an 11-year-old caught in this terrible cross fire from hell. we feel the seering pain of mothers and fathers grieving the loss of a baby child taken before her time. we are called to bear witness and so today we do. to all of the nay sayers, i say you may be to be kill the mess jeer, but you cannot kill the truth. some are sin kl and believe we cannot clang. some believe that the murder of thousand of young african-american men on our

streets is to be accepted like it's a part of the natural order of thing. it does not have to be this way. is hope because of young people like ryan dalton. ryan dalton is the sixth of 11 children raised by his moms in new orleans. he was nearly lost to us. shot three times with an ak47 laying on the street of new orleans. he survived. he got up. he turned his life around. and with a program we have in new orleans a noft for profit that qebts young people to he came and started his own organization to help young people and last year he went to the white house to talk to the national leader about how to stop the violence. this winter he joined the mayor staff as coordinatorrer for midnight basketball he hosted

over 2,100 moly young african-american men. ryan -- [applause] ryan was saved because we as a community came together and showed him love, helped him see his unique worth and remarkable potential. by working together we created a pathway to a better future and he took the responsibility to walk down that pathway. now he's saving the live of other. he flipped his script. don't tell me it cannot be done. ryan, thank you very much. that young man right there, his life is a testament that hope, those may be concealed is always there waiting for for us seek her up. this is where fortitude and

courage calls us to keep going. to hurt but not to despair. to struggle but not to stop. the never-ending march to the more perfect union we all dream of. >> these issues of the day should capture our attention on a continuous basis. after all, peace and freedom come only in struggle. everything that -- in everything can be lost just in a moment in an instant in the blinking of an eye. we cannot dodge our responsibility and ignore these problems because they won't just go away. actually tried that before and now the problems are bigger and the remedieses are more painful than ever. in closing every new year's day we visit inmates at our city prisons. i talk with them. men, women, and, yes, juveniles. a few years back, i met a young

man, his name of the ken. hef 17 years old and facing 7 to 20 years for four armed robberies. his total haul from the robberies $2,000. so much of his life given for so little. i stayed and talked with him for awhile. despite his crimes and decisions, kent had a youthfulnd about him. still a sense of hope. she was very smart and very respect offul. it broke my heart to hear he had a 3.6 gp a. colleges were sending letters to his parents house trying to get him to apply while he was still in prison. that's a tragedy. kent's story shows a stark term the crisis that we face. the boy had remarkable potential.

in a different world, he could have been anything. a lawyer, doctor, engineer, mayor, governor, president. but instead it's the same old story. so similar to is many other young african-american men. so much talent, so much potential, wasted either behind bars or in the cold rain. now is the time to make combating murder and violent crime a top national priority. now is the time for adults to take responsibility for the young people in our lives. whether it's your children, your nieces, nephews, student, your own employees, kids who maybe live down the block. we may not all be at fault. we are all responsible. we each have our role to play. and through our work, he cans a spire our nation and the world proof that tragedy can come from triumph. i have great hope for the people of america, because we never

stop moving forward. even in our darkest hours, because we take action. we have a long way to go together. so here is what you can do. do stories on this american problem. week long personals. show what is going on like you did during the civil right movement, the hanging, the water hoses, the beating, the dogs. like you did during the vietnam war. dead american coming back from foreign battle fields. take the responsibility and show dead americans coming from the battle field streets of our cities all across america. talk with mayors and governors and ask what they're doing. meet with citizen on the street and hear their plea and cry for peace and freedom from violence. talk to police chief and law enforcement community about their ideas. ask a member of congress what they think about all of this. and more importantly, what are

they going do to stop the daily carnage? what is the federal response america's new civil war? cover these story, care about the issues, devote air time and budget and beers tell me to the horrific american traj i can. black men and boys are dying. americans are dying. their on killing feegd. do something now. knowing demands action. [applause]

[applause] thank you, mayors. both of you have sounded solutions that appear much like those advance by your predecessors, mayor mark and mad your ed randall. what will be different this time around? >> thank you. thank you for the question. i think the difference is we've carved out pathway,. i think we articulated some solutions. the discussion that many of us are having how do we best utilize in many instances the resources we have. we continue to learn from our predecessor mayors. we continue to learn from the mayors in office. those maybe who have impone out of office repeatedly. the issue for us how do we best collaborate and coordinate and maximize the resources. how do we get america to pay attention to the particular issue in way the country has not in the past? it's happening every day in the

street of america. and i forly believe if it were some other issue, just have a lot more attention. >> also, to recognize the work they have done with president clinton and vice president biden said today. the '90s they expanded a target of the program across america. it was one of the main tool that helped public safety to the community. we're asking for congress and the president do it again on a targeted basis. we know that worked. if you do something this works and you stop it and go goes baseball to where it was. a good message you might want to try it again. we think it's a targeted way to make it happen. >> funding is, of course, an a-list topic in washington. you talk about looking at the pot of money coming back from wars overseas as potential source. do you have any other potential sources of revenue to fund the initiative given that you're not the only one interested in that

particular pot of money? >> well, first all, i think the mayor and i would agree and most mayors in america called upon to do the hard work of government. we have balanced budget requirements too. we cut our budgets, i mean, significantly overtime. we recognize waste, fraud, abuse, ineffectivenesses, inefficiency needs to be weeded out. we cut $100 million or 25% out of the budget. we know what cutting is about. we actually know how to do it. we do it fairly well. but it is also true that you need resources to work. the message from is always we don't have any money. it's curious to me, speaking for myself now, that in a discussion of the immigration bill, as it is waxed and waned over time, turn t urn in to we need $32 million to build a wall. it materialized because it was something the nation thought was important.

as the mayor said, when the nation has decided something was a priority. you need to find a way or make one, we believe, it's a national priority. it is a national issue. and we have to prioritize our resource much like we do when we try to protect ourselves not only away but on our homeland as well. >> you said president obama ready to help. what specifically has he said he would do? >> a group of us were with president obama and attorney general holder about month or so ago, and notwithstanding as mayor landrieu pointed out the congress wants to fund something they fund it. i think we are not laboring under the misimpression. suddenly significant funding will come flowing to cities. but the federal agencies whether it's the attorney general office or the u.s. attorney and our respective areas, fbi, dea,

alcohol, tobacco, and firearm, the federal marshalls. all the agencies are on the ground in the respective cities. they have budget, personnel, equipment and technology. so you a federal -- the department head knew that

two levels was going to ask how many cases did you fake federal? how many gun did you get off the street. how many parolee, people who skip bail have you captured in the local jurisdiction. actually matters to us what you're doing on the ground. you see a different response on the ground if everyone knew their evaluation was partially dependent end on what they're doing in the local jurisdiction not just operating. you can use the resources that we have in a much more effective fashion. >> you taunt the macrolevel of the stories you need to see. they are often criticized for not writing or broadcasting much about individual victims of urban violence particularly young black male victim of urban violence. do you think that's something the news media should do better on? >> well, [inaudible] obviously murder and destruction

every day is not most positive story to cover. most news casts, at least local news. the first 12 minutes or so is about possible bad thing that can happen. it's depress. we cannot ignore the issues are going on. when i talk about the civil right movement, it was when people saw the water hoses, the dogs, heard about the hangings and the stuff going on that america said it's outrageous. we cannot stand for this. there was movement. the civil rights issue. vietnam war, a number of other things. when the american public truly uns what is going on on the street of america. i think it will change hearts and mind and see folk get a little more corning to do something about the particular issue. it will make you uncomfortable. mayor landrieu and i are uncomfortable every day. when you get that page and terks message about what is going on on the street it's not a happy

time. you can't always be nape these jobs. death and destruction is not a happy business. it's taking place. that are not shooting people. as mayor said, poverty is a part of it. it's not just about poverty. there are a lot of people that are poor that the are not shooting people.

some people will say it's about joblessness. there are at lifetime of fighting people that unemployed. it's a molotov cocktail of a number of things that come together. one of the challenges has been not to divert your attention on to issue that are not going solve the immediate crisis. is there a common ground now? we ought to spend our time. mayor said a minute ago, we said we need more money from congress. we're not laboring under the misimpression somehow they bestow money so we know we have to do it ourself. we said it's a national problem. we didn't say it was just a federal problem. those are different words that mean different things. there are many ways we can work together on the issue. it's got to be coordinated and focused. it's got to talk about gun and

mental health. it's got talk about education. also the relationship people have to their community with church and pastor. the point when everybody pulls together it's a problem we have to solve. there are to bees of resources already that pull together and make focus. that's ignorant. [laughter] if you talk to anyone of lessor means i can assure you they are not enjoying their status in life. we had a job expo for americas over the committal record. 3200 folks preregister.

2500 plus actually showed up. folks who are living in poverty don't want to be in pouf -- poverty. that the want a good job, want their kiss to be safe and mauve move on to get some verlings of the american dream. so, you know, i don't understand a great deal about washington, d.c., or some of the things that go on in the congress. but cutting the republican budget to cut the program by 50% seems not make sen. it's your fault and you should stay there. i don't think that's the america that we have grab up. the america that started 230 years ago in my great city. i thought we looked after folks. we look after everybody around

the world. kids go to sleep hungry in philadelphia, new orleans, and new york. if something horrific happened on the other side of the would. i can assure you within 24 to 48 hours you will see a crshes 117 parachute of food going out the back of the plane. that should happen. my question is where would the food yesterday? and why it wasn't in my city and many other city across united states of america? we have some contradictions here we need to deal with. we cannot take care of the rest of the would and not take care of ourself. we are big enough and bad enough as a country we can do both and do great thing around the world. we need to take care of our own people at the same time. [applause] >> in two decades of american

demand that government leaders be, quote, tough on crime. a number of african-american men have been incarcerated. what to you think the impact of violence of that. have we changed the approach? >> one of the things america is beginning to come to communion on, when you see right leaning think tank and right leaning think taken talk about the incarceration rate and the mandatory someone without much thought. we have to do two thing. we center to be on cuff on crime. safety on the street of america is allows people to be free. so you to be smart on crime too. you can't just have a one size fit all approach. i think very smart people who have been looking aid is we may have missed our way on that as well. we may have put people in jail not the most violate criminal and didn't have the resource to find the most violent. have to rethink all of that.

much is being lead by a movement in juvenile justice. we did it in a state of louisiana. after we did studies we found with out it thirds of the people in the juvenile facility didn't need to be there. one-third that were were still on the street. we could be smarter in how we did in creating continuous of care. reduce the amount of money for incarcerate. have resit vifm practice in place to help kids stay where they need to be staying. it can be applied to the adult population. let be clear. mayor speaks more forcefully than i do. we have to understand that there can be no toleration for the kinds of shooting on the street of our cities. that we know in new orleans, for example, that at least 5% of our population, 691 young men belong in the gangs. are causing trouble for themselves and everybody else. we're not soft on them. they have to stop. we actually have something called the gang violence

reduction strategy. we bring them in and tell them we know who you are. and just to prove it to them. we show them their picture. we tell them they know everybody. and the next one that shoots will be visited by the multiagency gang unit that is made up of dea, atf, fbi, and everybody else. you have to stop. if you shoot somebody as the mayor said, you have to go. now, that's today. but as the drum beat of death continues as the tie tal wave movers on. we have young children being born to the same culture of violence response again, this is not just a public safety issue. it's a public health issue. it's like a virus. as i e enunciate to you in my prepared remarking from 1980 to 2011626,000 people. we didn't have it before that time. it's kind of a new historical trend that did not always exist. if it didn't exist always.

we can change did. not if we don't recognize it as a problem. >> with are almost out of time. before wrapping up. i have a couple of housekeeping matters to take care of. first of all, i like to remind you about the upcoming speakers. we'll have arne duncan. on october 18th, we'll have george actor and gay rights activist who will discuss lgbt issue and on november 5th we'll have gloldy hawn. i would like to present our speaker today with the traditional national prez club coffee mug. [laughter] [inaudible] [laughter] especially suitable with cafe

venn yai in new orleans. thank you for coming. i would like that ask for a round of applause for our speakers. [applause] [applause] i would like to thank our national press club staff including the journalism institute and the broadcast center staff for helping organize the event. here is a reminder, you can find more information about the press club online at www.press.org. thank you. we're adjourned. [inaudible conversations] tomorrow new york senator will talk about women and the u economy. she'll be at the center for american progress live coverage at 10:30 a.m. eastern on c-span 3. later, a discussion on syria' chemical weapons program.

and the challenges the international community could face disarming the country's stockpile. we'll hear from a former member of u.s. special commission on iraq. that get started at noon eastern on c-span 3. up next the president of the march of dimes testifies about federal funding for newborn medical screening programs. current fund expire at the end of the fiscal year which is next tuesday. north carolina senator kay haggen shares on children and families. [inaudible conversations] >> i want to welcome to this hearing to everyone on the sub exee on children finally. i want to thank all of our witnesses. thank you for being here today.

thank you for your work. thank for taking the time to come from across the country. i really look forward hearing your testimony. i want to e specially thank our remembering member for his work and his staff's work on this hearing. i look forward to working with my colleague to move the reauthorization of the newborn screening save lives act throughout the senate this congress. and i am proud have you as a cosponsor of the bipartisan bill. thank you. this morning we are here to discuss the past, the present, and the future of the newborn screening system in the united. and i sit not justice as chairman of this sub exee, but as a chair mom. because as a mother of three, i personally know from personal experience that with you have a child, your first hope and prayer is that your schield

healthy. so, please, every family saidlet let our imhield healthy. that's one thing every parent is praying for. thank inned a van to medical technology, the vision of medical professional and the daily work of nurses, doctors, lab technician. we now have the ability to detect and treat dozens of life threatening conditions before they're able to cause serious harm. it wasn't always this way. our system has developed over the course of decades. in fact, this month we recognize the 50th anker have i are of newborn screening. in 1963, massachusetts, delaware, and oregon became the first state in the nation to mandate universal newborn screening. and the first condition that we screen for of pku. one baby in 19,000 is born with pku. in the united states every year. these baby appear normal for the

few month of life, but unprocessed protein builds up in the bloom and will cause developmental delay. thanks to the dried blood spot test he developed so many years ago and we still use today, babies can avoid that fate with simple changes to their diet. just amazing. later, screen were developed for new conditions like sickle cell disease and cystic fie broad array sis. these advantages are life saving. only for those who live in state where they were actually implemented. some states lagged behind others and adopting new method and technologies.

as a result, a baby born with a condition that is inherited might receive the proper treatment in one state that go une deducted in another. in fact, in this very room, 11 years ago in the last hearing that the senate held on newborn screening 11 years ago senator chris dod then the chairman of the subcommittee said, let me quote, there's an enormous disparity in the newborn screening between the various state in our country. only two states at that time only two state will tee for all disorders. the vast majority tests for eight or fewer. that was 11 years ago. the situation cried out for federal leadership. thank to the work of dr. rodney howell who was the first chairman of the secretary of advisory committee on disorders and dr. howell is with us today. i'm pleased. and i thank you for your work over so many year. in addition, thank to the work

of the american college of medical genetic, the marge of dimes, the department of health and human services and many other. a consensus development was developed that recommend to the state which conditions to screen for. congress also reasoning recognize the problem and pass the newborn screening safe life act of 2008. which submitted the role of the advisory committee and reviewing new conditions and established federal support for educating parent, researching new screening technologies, and ensuring the validity of existing screening tests. this is a dramatic improvement. in 2011, the crb c recognize thed a van of the newborn screening as one of the ten great public achievement in the

united states for the decade 2001 to 2010. i think that is something that in america have to be proud of. and that's why i'm proud to take the lead with senator hatch on this reauthorization. in building on the progress we have made so far. by reauthorizing newborn screening safe lives act. our bipartisan bill of what senator incity is a sponsor focus on insuring followup care for all newborn. establish time line for the review of new conditions to recommend a state for screening and continue to nih research aimed at identifying new treatment for conditions that can be detected through newborn screening and developing new screening technologies. i look forward to working with the cosponsor of the bill senator hatch, casey, incity and hopefully many others to pass

this bill this congress. to tell us how it works we have a panel of withins today. sky each of them to keep your opening statement to less than five minute. i thank you for your written statement. which have been submitted for the record. i now want to turn to my colleague senator enzi for his opening remarking. hopefully we can get it brought up before the full committee and get it brought on the floor and get it taken care of.

i have said before. i think it's truer today. we need to spend more time listening to the thought and idea of our constituents rather than presuming we have in washington automatic have the answers. screening every new baby for the serious conditions. many of which ore undetechnical nt for month or years is an important public health priority for state and the federal government. i'm particularly pleased to see the chairman's bill improve the process for hhs and the advisory committee. to review the evidence on potential new screening test and place a priority on screening for conditions where new extreme os therapies might already be in the work. we must continue to support medical and scientific innovation, along with basic research if there's to be hope we can further improve the live

of baby and children afflicted with these conditions. again, i look forward to hearing from all of the withins about the significant health benefit they veeded for the last 50 years as well as what they envision for the future the reported will be open for adigs until question after wards. thank you for participating. thank you,. >> thank you. i'm happy question work together on the bipartisan bill. it's a pleasure to work with my colleagues. our first within today is that tasha, the director of baby's first test. our nation's clearing house of newborn screening information and education for parent and health care professionals. >> chairman.

good morning. thank you for the opportunity to testify today on the important hearing about newborn screening. i'm the director of baby's first test. the newborn screening clearing house. we offer team and health care professors support through the newborn screening experience. in addition to being there when families need resources, we bring family and public perspective to the newborn screening dialogue. imagine it's 2008, and you're a new parent. you receive a call from the pediatrician on a friday afternoon and learn your baby's result were not normal. during the seven-years i worked in newborn screening countless parent have described the scenario to me. they explaining the anguish they felt as they nowhere to turn to until the following week when the doctor's office is open. fast forward to today and 24-hours a day, seven day a week we're there for them. it's critical to ask what do parent want and need? in 2008, get net align the

parent organization conducted survey and focus group with over 2,000 women to untheir attitudes and perspective on newborn screening. some of the key findings of the survey was 98% believe that newborns should be screened for conditions for early diagnosis can make a difference. more than 94% believe that newborn screening was important to improve the health of baby. there are few programs with can turn to that have the level of public support. it's clear to the vast majority of people because newborn screening has the ability to save and improve lives it should receive strong support. while one in 300 baby are wifed a treatable condition. the program reach nearly all of the 4 million baby born. a it's actionable information. of those surveyed 93% wanted information on what happened if

there's an abnormal result. 89% wanted to know what specific conditions their baby would be screened for. during the same period of time we conduct our research. it became law. this law provide a national framework to support education and evaluation programs. fully launched two years ago nearly 80 percent of the visitors are new. are new to the site. this is to be expected as every day thousand of babies are born. we average more than 15,000 visit a month. we are to be get the word out. some of the key component clear

comprehensive and specific details on all 50 state and territory newborn screening programs. we provide information on what it is. what do if there's an abnormal result as well as condition specific information such as discrepancy, followup care, as well as support services. we have information for health -- professionals. this year we plan to develop a spanish language verse of the site. that provide a translation of all 1 hush ,000 newborn screening but addresses specific issue and concern of the latino community.

it's been instrumental. this year we celebrate 50 years of newborn screening. however, we know that most expecting and new parents still don't know what newborn screening is and what their state screens for. we're working to change that. it's the healthy step. thank you for the opportunity speak to the sub committee. i look forward to aning any of your questions. >> thank you very much for your testimony. >> also one of the leading researchers and advocate in the history of newborn screening. we are certainly honored to have you with us today. >> thank you very much.

thank you for inviting me here to talk about the committee. i've had the opportunity to see firsthand for nearly 50 years the accomplishments. of the program. the current panel of conditions implemented by the states will this year identify 5,000 children with hearing loss, 210h 1250 and total of 12,500 children whose lives will be profoundly altered or saved due to newborn screening. as a physician and question nettist, i'm encouraged by the pipeline in development that representative great promise.

two both of these devastating conditions have drug therapy currently under development which will likely be a great benefit. they will be required to be administrated soon after birth. it will available the -- the nih saves lives reauthorization of 2013 is really essential. it's very important part of the legislation that will support currently lack treatment. now we have treatments for conditions that can be diagnosed and treated as a result of newborn screening will also need to have continuing support for large pilot program for the study of the long-term outcome of children and infants diagnosed as a result of newborn screening. it al has a potential of

actually saving money in our challenged health care system. skid, or officially known is a condition where infants are born lacking an immune system. if a baby with skid is not diagnosed at boirt, the outcome is death and infancy. usually only after week or months in a hospital intendive care unit beating life-threatening infections. in addition to the enormous emotional identified at birth the baby can receive life saving umbilical tran plant in the outpatient clinic over a period of days.

bills on the accomplishment of the newborn screening program and allow the committee to continue to deliver the latest evidence-based diagnose cease and treatment for now and in the future and holds tremendous promise for genetically based therapy that benefit our children and families. i thank you for your support.

>> thank you for your work. >> thank you, good morning. i want to begin by commending you for representing states that currently offering 30 out of the 31 recommended conditions with a great deal of attention on the remaining stie. just common dedication to both of you. as president of march of dime. i a privilege of representing unique partnership. truly one of the great public health victory. it is critically important. it's a highly effective public health program that test every

newborn for certain genetic metabolic, or monal conditions that are not apparent at the birth. approximately one in every 300 newborn have a condition detected through screening. if diagnosed early it can be managed successfully. thus reduce not only the physical burden of the disease but also the associated economic burden on families, community, and our nation. this year we celebrate the 50th anniversary of newborn screening. march of dimes is proud of the decade long involvement in the history and funding research that has helped to lead to contribution to the development of new screening tests.

the progress over the past two decades did persuade them topaz it in 2008. it's too for the regular five-year reniewfl. secretary advise recommittee on disorder and vital work to maintain an update the recommended uniform screening panel that state use to consider and adopt and implement new conditions. that committee evidence review and is work should be able to be continued uninterrupted.

it reauthorization act extend very important program at h erk rs ark which include seven genetic and newborn screening regional collaborative groups to support state capacity. the critical heart disease, newborn screening, demonstration program, which is improving protocol for point of care screening. baby first test which you have heard about. a wonderful national education roar for parent. the newborn screening technical tan and evaluation program which serve to help state evaluate the effectiveness of their screening programs. a quality assurance program, which continues to upgrade the accuracy of newborn screening tests, and the very important research program at nih which supports contract to improve

technology related to newborn screening. today 42 states and the district of columbia require screening for at least 29 of the recommended 31 conditions. millions of babies have been screened for dozen of disorders, thousand of cases the health and women being of the children has been preserved. its also represent a model we believe of federal, state, public partnership. so we urge you not let this vital public health program falter. on behalf of 3 million march of dimes volunteer and countless other organizations and family. we urge you we urge senators who cosponsor and support the reauthorization act. we respectfully request your report the bill out of committee and we look forward to working closely on the bill with you

with chamber leadership to ensure it can be passed as soon as possible. ..

we have some personal experiences with newborn screening reminding us volleyed this is so important. >> good morning, madame chairman, thank you for the opportunity to share our story with you today. as with all children, my son's story began well before his birth. i believe that every heart has a story and this is his. my husband and i learned that we were expecting our first child on a hot july morning in 2008. our joy and celebration was tempered quickly by some early complications. however, we were overjoyed to see her babies strong heartbeat on the screen in front of us during our first ultrasound. from then, we weathered a complex pregnancy with optimism and hope, ultimately we had five

ultrasounds and our baby would be born with two critical birth defects in our position assured us that his heart was strong in his prognosis was good. on march eight, 2009, our precious baby boy ethan was born in my husband and i spent the first eight hours of his life and surrounded by friends and family. and we prayed that he would be okay. that we had no idea that in just a short time you challenges would be coming our way. as the postpartum nurse was bringing him back to us after his screening, she noticed in her words that he just didn't look right. she immediately wheeled him back to the nursery and hooked them up to a pulse oximeter. through that noninvasive screening, she discovered that ethan's oxygen saturation level, which should've been at least 95%, was in the mid-60s. i will never forget hearing the words, we have reason to believe that there is something wrong with your baby's heart.

he was born with a defect of the heart. while a pediatric cardiologist explain what explained what that meant, the bottom line was that our son needed to be rushed to duke university medical center for open-heart surgery. it wasn't until he was nine weeks old that jeremy and i walked out of duke as a family of three and mentor home with her son. four years later, eat and how it is now he has injured 14 surgeries and procedures and he has survived full cardiac and pulmonary arrest. despite his start, we now have a boy on our hands who loves bugs and cars and playing with his preschool friends and we know that there will be more stories ahead, but we cherish the time that we have together. every heart has a story, the story of ethan is one of strength and resilience.

it can take away the arctic of screenings and surgery, but it can be the start of a lifetime of success for a baby born with a congenital heart defect. it has taken a lot of work to get ethan's work yesterday, and it all began with an observant nurse. however, a baby should not have to rely on a doctor or nurse's intuition to diagnose potential and fatal conditions. ethan story and simplifies importance of newborn screening. and it's saves lives through the reauthorization act that will help ensure that have been events throughout our nation are screened for treatable conditions like ethan's condition at birth. i urge all members of the committee to support legislation and i sincerely hope it will be passed by the full senate this fall. thank you again for listening tour story today and may god bless you. >> thank you, for being here today, thank you, ethan and

germany for being here today. thank you for your experience of how important newborn screenings are to each and every family that has a child. the hearing will remain open for 10 business days. for the senators to submit questions. we'll start with the questions now. let's just do a round of five minutes. and then we can continue. >> man come i wanted to ask you a question and thank you for sharing your story with us and ethan story. we are glad to here that he is now a happy for your old experiencing all the things that you said from bugs and cars and trains that he loves. you noted earlier in your statement that his physician detected noncritical birth defeg pregnancy. is that information that looking

back they think would be valuable to you and your family would've found helpful and comforting? remark sure come in a position it took all of the details of those to birth defects. he assured us that ethan would be screened at birth. at the time it was not mandated by north carolina and i was not specific but he did inform us that he would be well check checked and looked over after his birth. >> i know how important it would be, for pregnant moms to understand that aspect of newborn screening and i think when the questions we have is how much is actually being done in the offices. since he was born, ethan, as you said, north carolina has required this testing for all

newborns in the state to detect these critical congenital heart defects that even had. and i understand that you have been active in the community and that you have been meeting with other parents whose children might have a heart defect or other condition detected from the newborn screening. can you share what mandating this and not letting it remain optional has meant for other parents in the state you have spoken my. >> absolutely. your question is very timely. i just learned of a family in north carolina, two families that since the screaming, their babies have been screened at a community hospital, congenital heart defect was detected right away and the baby was able to get to a larger hospital to receive the care that he needed. so it is already making a difference in north carolina. i am very honored to have played a small role in a. >> thank you.

>> ms. bond home, as director of babies first, you are regularly engaged in trying to educate parents who may not know much about newborn screening. were the most common is perceptions that you have and are their education efforts targeted for a specific communities that we know have a higher incidence of conditions that will be detected by newborn screening, we know that sickle cell anemia is obviously prevalent among african-americans and that certain heart defects are more common in certain areas of alaska. can you go over the questions in the educational issues. >> absolutely. one of the main questions we receive is why didn't we hear about it earlier. parents always wonder why didn't i hear about this when i was planning my pregnancy or when they were talking about other

different screenings that we're going to take place. you hear about breast-feeding in all of these other activities that take place on these first few days of life. and in terms of programs targeted towards specific communities, there are there are a number of organizations in the state and national level, one that actually babies first is helping to target those who need the screening particularly wrapping newborn status into sickle cell testing. i know that that it shows information about that, about the newborn screening in this particular condition that affect that population. soon i think you.

>> senator enzi? >> thank you, for the mullis family, i cannot even imagine what you have been through. my wife and i had a daughter that was born premature from some of those daily ritual things. >> especially if he considers that you are the one 10th, fewer than 99% or whatever. thank you for sharing your incredible story, it makes this tremendous impact. i would like to ask doctor hal on this legislation has been introduced by the chairman that has new timelines that we have been able to review the evidence for a priority review status and

a shorter deadline for the secretary to adopt or reject the recommendation of the advisory committee. can you explain why these new timelines are needed and what do you think that they have nominated for screening? >> thank you, senator enzi. i think that the timelines are introduced basically to try to ensure that the process goes forward briskly. particularly for instance when a drug has been approved, the conditions such as a newborn screening condition, we think that the fda has reviewed that and it has proven it's a valuable drug. we think that the valuation of the newborn screening should proceed quickly and perhaps a little bit more rapidly. i think that it's very interesting that we work on a short timeline because the conditions that we are looking for and screening for are commonly fatal conditions. any delay that we see that we

have will encourage that. and i think that we have looked at them pretty carefully. and i think on the other hand they clearly can be accomplished. the one thing that will be important as the committee works on the legislation is to ensure that the committee has adequate resources to do the evidence reviews. they are expensive and so up we have a couple of conditions that need rapid review, we need to be sure that the funding is there. but in the bureaucratic world we live in, we want these conditions to improve rapidly. the secretary is always very busy, as you always now. during the latter portion, having the secretary have timelines to respond to the committee is affected. we got letters that were

quickly. so i think that they are realistic. i think that they will require a little bit of effort, but i also think that that is fine. >> let me add one other thing. i think the fact that you do have these timelines, i believe it will encourage the persons nomination to be a little bit more complete so that they know that they can work quickly rather than having loose ends. it's a good thing to do. >> would anyone like to comment on that? >> okay, so we moved to the science of genetics which moves to the research of the united states. the scientists and researchers are learning more about the code that makes each of us who we are, and that is continually involving with the newborn screening that saves the lives reauthorization act and included in what the advisory committee

with pending therapies. we have talked about this but can you discuss the new pathway in terms of medical research and treatment for these conditions and what some of the new things are coming down the road that we may not know about? and how that will affect the development for these conditions? >> let me elaborate briefly on the two conditions. it is a condition that many people are aware of. it affects boys. it is a devastating disease that we have known about for a century. and we have actually known the genetic defect, the genetic absence of a protein. but it has been tough to figure out how to get that back. there are all sorts of studies going on, but there is one study going on and it is very

unfortunate in the long-term. basically that is a compound that attaches to the dna. were you have a deletion or absence of the portion of the dna. including a special compound that is like a bridge. so you have the part of this here, you have a deletion and then you have the rest of the regime. so these have some very encouraging results. that we really would like to be certain that as we move ahead that there is a lot of conversation between people doing newborn screening, people working on this, that is encouraged in the bill, so the drugs are coming so that if the drug indeed does show great resolve and is life-saving, it would be very important for that newborn screening program to be

rapidly moving. otherwise you have this life-saving thing and you don't want to sit and think about it for a long time. you want to move quickly. i am a big advocate. the number, there are similar drugs and they are very exciting. again, it is the most common fatal neurologic disease. a devastating disease, and encourages the results out there. we want to be ready to take care of them once they hit the market. >> thank you for your ability to explain something very difficult. >> i expect he will be explaining this to your colleagues. [laughter] >> thank you. >> senator enzi will be doing that explanation. >> you'll be busy talking about this, right? >> thank you, madam chairman. i want to thank you for calling this hearing.

you in the senator are here with us today, and we thank you with what is such an important issue that we don't spend enough time on. i i'll have a longer statement for the record that i will propose a few questions here. but some of your testimony reminds me of a story. but first we want to thank all of our witnesses, especially for you taking the time to be here, not as an advocate, but a personal witness to how important newborn screening is and how important it is to reauthorize the legislation. doctor, and i'm sorry that i missed your testimony. we are lucky to have a copy of all of your testimonies. but when he said in the second paragraph about pku and how a lot of these screening efforts

started as long as 50 years ago, you said that children with an inherited condition known as pku with an average iq of less than 20. such untreated children who have a normal life span are unable to speak or care for even simple needs and require full-time care. they are robbed of many of life's opportunities. your testimony just so happens that i have a little bit of a personal connection. my father was a state state senator in the early 1960s in pennsylvania. now u.s. senator hagan was a state senator at one point in her career. but he saw this information that was available at that time. this would've been for him in 1963 or 1964. he had a law passed, which led to the new policy as it relates

to children in pennsylvania, just a very inexpensive screening at the time, that saves a lot of lives. i will put in the record his recollection of that. he passed away more than 13 years ago. so i want to, as we pay tribute to our panel and those that are advocates, what i want to pay tribute and remind us as we put a reminder in the record. i wanted to ask about one of the challenges that we still have that all of the internet access, all of the technologies available. we know from just the last couple of days, the folks that don't have regular access to the internet, ms. bonhomme, if we are focused on baby's first test and then the work that you are doing it relies upon internet

access and disseminate information, what steps have been taken to ensure that parents who lack reliable internet access, that they can also obtain this information? >> to give her that question, senator. while baby's first test has a very public online presence, we have a number of locally based community-based community-based activities and the failure he is a challenge awards that are targeted towards where there are educational gaps and not having internet access or reliable internet access is, a great gap in the number of our citizens face. so we do invest in that fashion and you will partner with community-based organizations to make sure that they can disseminate information and we have had programs that have gone worked with local and public local public library system to make sure that there is information there. but really the partnering communities, so that they can say that we know that there are

a lot of moms and families to go to this particular part of town for whatever reasons, oftentimes at the library were a church it must make sure that we have materials there. so we really do try to address that issue of not having lot of internet access. also, they oftentimes have access to being able to provide materials that go home with the mom and we partner with them to create materials that will go in there so that there is something with a postcard or hand out after the birth of their child. >> i appreciate that. i know that my time is running out. and let me take one more for the doctor while we have a couple of minutes. i wanted to ask you about the fact that we have had state taking action over time. i mentioned what happened 50 years ago in pennsylvania.

when states are making decisions about these screenings, what factors, if you could identify what factors would screen for a particular illness that the advisory committee recommends screening for. can you shed some light and determining what goes into that? >> it has advises a state health department and they basically will look at a recommendation that comes from the committee. one thing that has been extremely gratifying to me is that when the committee has been established, it has broad representation and tremendous expectations and when i committee of the detailed evidence review, one of the things is looking at that and overwhelmingly have adopted it.

which is been very gratifying. i might point out that adoption has not been out of the blue, it has been helped tremendously by advocates of the state. fundamentally the fundamentalist have a criteria to go on. virtually all of the recommendations have been adopted and occasionally some recommendation will come down and say this will be very difficult. but even when they initially decide not to do it, they do move along the doing. and i would like to comment briefly. but when the committee has recommended the implementation of what i would call a rather complicated new technology, such as this, where you are looking at a test that is needed. the committee had recommended in

the nhs nah had founded a national pilot program, so you tried it in three or four states and dead a lot of this to see how it worked. whatever problems out in the field, that has also been invaluable and if you look today, still states are implementing this within efficiency and starting to critical congenital heart disease in the state of florida, for example. florida is in the process of implementing this. but again, to get that going, they need to meet with the various people around the state to decide what is going to happen when a baby in pensacola needs to be followed up and say that you have organizational changes and so forth. but there will always be a committee that will say it is rare and when the committee was first established and i had the privilege of working with it, a number of colleagues, thoughtful

colleagues that i don't know why you don't waste your time on that because you're going to be in washington make all of these wonderful recommendations of the bright people and the people not pay any attention to it. that did not happen largely because of the advocates that once the data was available, they made it happen. >> i want to thank the panel in the advocates that were here today and others like it for bringing light to a terrible dark darkness. thank you for another three minutes and 30 seconds. >> anytime. thank you, senator casey. this is a question for the doctor and ms. bonhomme. most babies are born in hospitals today and some do jews have their babies born at home or in other settings. in fact, since 2004, i have understand that the rate of birth occurring has risen nearly 30% in the united states, these newborns and their families

should not miss out on the life-saving opportunities presented by a screening. just because the provider setting is not in the hospital. doctor can you tell us how the newborn screening system covers babies are not born in the hospital and does that occur? >> i will defer to my colleague for the particulars of outreach. but the quick answer is really very unfortunate for any of the babies that are born at home not to have a wink into the hospital so that those tests can be taken care of. i think in many cases there is active partnership between the birth attendant or midwife come active partnership with an obstetrician and a nearby hospital so the baby can be brought in and tested. it is quite important that happen in the first 48 hours, it will be even better.

so i think the problem is recognized and there are bridges for outreach and connection. but clearly, you know, you put your finger on a potential problem and that is the babies are born at home don't have that kind of went to jamaica without testing. it is something that we need to continue to be vigilant about. thank you. >> ms. bonhomme? >> we have done a lot of work to really try to understand that yes, most babies are born in hospital setting. but what about all of the other babies that are born. we have done a lot of work with midwives who understand how we do a newborn screening and it really depends on the state, some states the midwife can actually do the blood collection and they will do it in that way. in other states the family will go see the pediatrician, their very first pediatric visit.

but it does vary by state. one thing that we have done is understand what are the terms of newborn screening because that is going to tell us what they say to the families and they actually have done focus groups here in washington dc and what are their educational needs. and generally they think it is supposed to happen they are supposed to collect its blood on this filter paper, but they're not exactly quite sure where this information goes in and all of that. it is one reason. and including those nurse midwives because they are a very strong link between the public health program. >> so the children not born in the hospital, with a midwife, what is the best time to do the test? can it be done right after

birth? >> we recommend tween 24 and 40 hours. >> it to be done in two minutes? >> it should not be done in two minutes. most states, properly if the test is done within the first 24 hours, it will require so many changes happening that soon after birth. so that that would be earlier. and i think that is jennifer and natasha pointed out, many midwives have connections so that baby could go to a site within a 24 to 48 hour timeframe. they should not be delayed because certainly the conditions that we screen for, you need a very rapid diagnosis and it could delay and you like to have the data back to the baby in under a week. >> ms. bonhomme, the midwife would have to either come back or the child would have to be taken? >> correct. oftentimes the midwife is are

you planning to come back to visit the family, they will do the delivery, and making sure everything is okay, but they will still come back, particularly in bull areas to make sure that things are going along as planned. because of that it is pretty easy to be able to fit into the already scheduled appointments with the midwife. >> thank you. we put into law significant support for the screening, including expanding technical assistance and polity insurance and research additional conditions that may be screened by the state. authorizations for these programs expire at the end of this fiscal year, which is next tuesday. senator hatch and i introduced a bill in july to make improvements to this law, which is what we are talking about.

aside from the changes in the bill, can doctor howell, can any of you describe generally just a statement of why this reauthorization of the law is so important? >> first of all, to you for that excellent question. i really want to underscore the importance of the action by the secretary's committee because you heard the doctor speaks very eloquently about the successful candidate out of the discovery pipeline. those need to be linked very quickly with the process that is put together by the secretary's committee so those recommendations can be quickly evaluated and states can get that information quickly. that is a very important part of the bill.

and continue the programs that are established. there are the allowing for continual improvement of newborn screening. the various parties except the way the program works as a federal and state partnership. so we should take the program that is well working and continue it in an uninterrupted fashion. we are very concerned about the potential for interruption in the program that has a lot of moving pieces and they are well connected through the legislation. this is a proven program and we are very concerned. we so appreciate your effort. we are just very concerned that the program continue in honor of corruptive fashion. >> i think that that there are several things that we might comment about. that the states are always very pleased with funding and i think that the funding with the states to add an innovate is very important. and without the legislation, that's not what happened.

they tend to not have new money, so their condition and resources are tremendously stretched and this is very important. the other things that are in the legislation are very critical to make the whole system work. that is the new legislation will choirs that the committee meet at least four times a year and at least two of those meetings must be in person. i think the meetings of these committees are very important. because when they are important, it provides an opportunity for a variety of people and advocates and other people to come and talk to the committee and that makes a huge difference. the huge requirement of meeting in person, to move things along is really essential. again, the research efforts are just so important. for example some of the conditions that@ for example some of the conditions that we screen for, we really don't have very effective treatments for and we won't get those treatments

without the funding. it is just going to have to be there. and this is part of the response of the committee and we need to have the money to do the evidence review. so i think that it is a bunch of things that are included that are absolutely essential. and it is unquestionably the world leader in newborn screening. and that is the great thing to write about and it also means that we are saving lives in the united states. without the legislation, we cannot continue to do that. so i think that is part of a quick summary is why we should urgently pass this legislation. >> ms. bonhomme? >> the edge has been part of it. >> okay. >> what i will say is that this is part of a state program and the funding at the state level is so limited. it would really allow the

national dialogue around newborn screening to continue. oftentimes states don't have time to do the educational effort that we want to that today we talked about that are so important. being able to have the reauthorization for the program and also the evaluation programs that fall underneath that law to continue to go further. if there is a disruption, we really will be lost. so this reauthorization is very much key. >> since you and your family have personally experienced the fact that newborn screening does a blog, you have any comments you would like to share just on this reauthorization? >> i would just like to reiterate that the rest of the panel has said that i feel it is very urgent so that the conversation can continue. i cannot speak enough as to how

important this is to our family. we were fortunate that we were in a place in a hospital that had the capability to do this. we have a lot of very good medical professionals in our area so the newborn screening was talked to and shared with us when we first found out about ethan's condition and his original birth defects, not including his heart. i feel very strongly that other families and other babies should be afforded the same opportunity as well. >> thank you. >> let me just talk about the financing of the newborn screening. i understand that screening programs honestly we have heard the testimony vary from state to state. i think one of the questions that parents may have about the newborn screening is whether they will be able to pay for more tests or whether the baby will be tested if they don't have health insurance.

can the panel explained how most newborn screening programs are financed and whether the insurance status of the parents has any effect on whether the newborns are screened? i know know that in north carolina the screening fee is $19. and in wyoming, the $70 and in utah, $173. it varies widely from state to state. are the newborn screening fees set by each state and are they typically covered by insurance? >> sure, i will start with that. >> when you look at these fees compared to any sort of treatment, we know that screening must take place. >> wreck. okay, so each state determines its own newborn screening fees and i think a lot of that plays into the lab and what tests are included. one thing that you make very clear to parents and even if they don't have insurance, they will be able to get newborn

screening and that is something that when we are building babies, asking about information about fees and putting that on the website. every state that i spoke to said these make it clear that no matter what the dollar amount lifts, we will find a way to cover the newborn screening for each baby. typically there are the fees that we mentioned. also some states have a font that comes from different taxes that help to support the newborn screening program. >> in his funding, and some states don't charge anything, for instance new york state pays for the entire newborn screening out of general funds. we have a variety of things, but it is the one program that i can point to that is universal, a public health program and every baby is screened regardless of the ability to pay. the way it works in most states that charge a fee is to say that you are born at a hospital, the hospital receives a bill and

then they decide how they get the money. the patient ordinarily is not out of his or her pocket. it is arguably the best bargain, newborn screening coming in the united states that is estimated that it cost a little over $100 and the initial screening. which means that the total program in the united states costs a little over $400 billion a year. you say that that is a lot of money and it is a lot of money. but it is less than what we spend in one week on drugs for high cholesterol. to put things on perspective. so it is an enormous bargain. and all babies will get screened regardless of their ability to pay. it is the only thing i can think of that you can say that about. there may be others, but it's a very unique thing. >> doctor?

>> connecting with what senator casey had said. as to why states might not have the full plan panel in place and why there could be delays when a new condition is recommended. part of that does tie to the question of funding because it costs additional resources to implement a new test. to add that to the laboratory's responsibility and to make sure that the follow-up and specialty services are in place and etc. but the bottom line is that the burden does not come to the families. states have a number of methods about how they pay for newborn screening. many have special funds. many are a combination of fees and money that is appropriated by the legislature. i would really commend the state senator for the manner in which they have determined how they are going to put together the

funding packages make this program work. and i think that despite enormous pressures that have faced the state legislatures and governors, they have gone to great length to make sure that this is a place that expands properly and that the burden does not fall to the families. thank you. >> in your testimony, you stated that parents expressed a desire to learn more about newborn screening earlier in the pregnancy. the most parents don't remember getting the information. what are the basic things that you would advise parents expecting to do during the prenatal period to prepare for the newborn screening. >> sure. so really for us and what you have heard from parents as if they don't want to hear about this after the fact, they want to go they are a part of that

decisions around their baby and we really do encourage parents to ask their prenatal physicians and prenatal nurse. also a number of people and speak to the pediatrician before the baby is born, bringing it up in that initial meeting like this. when will i hear about the newborn screening results, those types of key questions so that we can start the dialogue early, we are all busy, including positions. but it really is a parents know the right questions to ask, and they can start the dialogue early with a health care professional. >> all right. >> we talked a little bit about some of the new technological developments. originally it was a development of this that allowed us to engage in the newborn screening in the first place, which is just an outstanding scientific

thing. but the development has allowed us to significantly expand a number of conditions that can be screened and the use of the dna extraction and molecular testing has is well made the screening of these new conditions possible. you have covered some of this. if you could please expand on some of the other new technological developments that you think how they will shape the future of newborn screening and as the secretary's advisory committee and how they consider the implications of the new technological advancements. will there be formal opportunities for parents voices to be heard in those debates. >> this has of course been the hallmark that has been permitting us to continue to be

very useful in there other things you can do, getting many compounds out months. but i think that the technology that is on the horizon that will be shaping the future is whole genome sequencing. >> what is that. >> whole genome sequencing. we look back on the look at every little base. so most of the studies are looking at the functional change of it. the national institute of health has recently awarded 4 grams that look at the whole genome sequencing on newborn screening and you can get out of this a sample of dna that is adequate to look at this whole genome. so this will be an extremely powerful technology, as far as

the ability to look at conditions that we currently do not screen for, because he would be able to look at an area of interest. and so i think that that technology will clearly be a driving force in the future. the question of you folks have an opportunity. all four brands that the nhs recently awarded has a required section of legal and social issues with this technology so that all of those guarantees, be at the university of california, san francisco, chapel hill, missouri, etc. all of them will be having a very careful look at the ethical and social aspects using this technology of the newborn screening. i think the technology will be extremely important in helping us understand some of our newborn screening findings. for example, when we had a baby

born with certain conditions, one of the conditions of screened in new york state, you have a low enzyme activity with a blood spot. but you cannot predict reliably whether that baby will have a really serious outcome or not so bad. looking at the whole genome, in which you are basically looking at the whole environment, by looking at this, you are going to be able to decide, oh, goodness, i think we have a series of problems. so to answer your question, the whole genome sequencing will be the wave of the future. it is just now in some important funding at the genome institute and all of those has big efforts to look at, implications for the family and community and there will be tremendous care as such

technology advances to the public. >> thank you. i was pleased to hear that chapel hill also got one of those grants as well to be a part of the study. and before i became a u.s. senator, i served on the ethics committee of a local hospital. so i had been a witness to many of the discussions within family members on issues concerning many of the ethical concerns in a hospital setting. so it's something that we have spent quite a bit of research and ethical debate on. >> very important debate. >> yes, they are. very important. a question to follow. this bill expands the scope of the grants to ensure that follow-up care for newborns and families occur. doctor howell, doctor house, can you describe the appropriate follow-up care from those getting newborn screening

results and what the common gaps are and providing the follow-up care? >> i will make a couple of overview comment. but i will invite my colleague who speak very particularly about pediatric care. the key with newborn screening is that this is a program for which a test is linked to an effective treatment and that is really the heart and soul of the treatment. the test is linked to an effective treatment. there is urgency, a great deal of urgency in terms of timely intervention and treatment for the newborns. the key to follow-up is the lab, the parents come in the hospital, and the physician. often there are challenges when a baby is released from hospital

to make sure that pediatric care is immediately available to the child. that is why there is an emphasis in the bill because that was sensed as an area needed to be strengthened, frankly. one of the key questions has to do with the parents ability to be connected to a primary physician, a pediatrician, and how that gets managed between the time of release from the hospital to the parents going back home. insurance coverage matters, whether the parents have medicaid or some other form of insurance and there have been frankly some issues there about continuity of care and i do think that that is an area that we need to look out from a clinical standpoint. and i would really invite the doctor to speak about how that connection gets made and how vital and important it is. >> a couple of comments, the

follow-up starts with the initial test and the state laboratory has an abnormal test that they confirm in the lab, and so forth, so they contact the primary care person that is usually a pediatrician. also because of the following problem. each of these conditions is individually rare. so that on friday afternoon, if the lab in raleigh, north carolina, calls a pediatrician on friday. and this always happens on fridays afternoons about 4:00 o'clock and says we have just had an abnormality with fatty acid oxidation and so the pediatrician of the primary care doctor has probably never heard of this condition.

it would be unusual. some of the things that has been done to do this with regard to the pim is that every condition on the panel, the american colleagues of medical genetics has prepared a one-page document that is called an immediate action sheet that summarizes the name of the condition and it tells what the immediate problems are and what you should do, and it has some references. most state labs are faxing that to the position of that point, so that when he wish he follows a family, they will have a little bit of information already. and they will say that we need to repeat this. so that is the first immediate follow-up. and then the condition that you need to institute. it is usually coordinated through a referral center, for instance, if this baby is born there, they would go to chapel hill for follow-up and it would

be instituted and then there would be followed up long-term with her doctor. some conditions require treatments where you have to have regular infusions. the other thing is in the legislation that is very important, that we have never had a systematic way of following up data on these children. we don't know a lot about some of these conditions except pku, which a federal study. one of the things that is that we really need to get one of these babies into follow-up programs so that they innovate and when we come back in 10 years we can say that this is what happened and we need modifications or this or that. the basically the primary care doctor and conjunction with a recent medical center.

the state laboratories have been very experienced over the years. they know who to call. for instance they will call if this baby born there, they will call the lab and at beacon and chapel hill that there is a baby in their region. but if they need care. the states are aggressive in finding these children. i began my current johns hopkins here in the state patrol would go up and find the baby of the baby could not be located. you need to find them and get them in. the states have really been aggressive in discovering these really sick babies. >> thank you for that background. i think that's very important. it certainly does paint a picture as to how the follow-up is done. the provision is after 50 years of the screening that we really do need to have these long-term

studies done in follow-up of children that have had abnormal screenings and treatment. now, this is an interesting thought. it even had been born during the height of a hurricane. what would have taken place. i know that when you look at these natural disasters like hurricane katrina. what does that do to disrupt the newborn screening program? the log required cdc to write a national contingency plan with instructions for how to react in those instances. our bill would require require the plan to be updated at least every five years because we all know with that babies don't stop being born just because of a fire or a hurricane or a fly. or a power outage. so doctor, do you know how to the contingency plan was helpful when hurricane sandy hit in the northeast last year and how the affected states were able to maintain their newborn screening

program? >> first of all, every state has a contingency plan in place. >> your microphone? >> yes, sorry. every state has a contingency plan in place. and we did not receive any reports of interruptions to the newborn screening program in new york as a result of hurricane sandy. and we know that the medical facilities particularly in new york city were definitely affected and affected adversely. but there seems to have been a very supreme effort made in new york and new jersey to make sure that vital medical services continued uninterrupted, we know that there were many emergency

labor and delivery situations that were handled. we know nicky babies were evacuated. often in the arms of their nurses and doctors to be brought to more safe and secure locations. we also received in addition to those kinds of reports, no indications that there were interruptions in this vital testing and follow-up. i would really commend the health professionals and the officials responsible. that being said, no plan survives first contact with reality. i think it's very important. to regularly update those contingency plans and make sure that particularly these babies do not fall between the cracks when mother nature comes to us in such a difficult way.

>> this bonhomme, have you spoke with parents that have deliveries due to natural disasters? >> i haven't spoken with any experienced it during the disasters, but i was in contact with the new jersey department of health. live from that experience from the fact that there was this plan in place which actually forced a different agency to speak to each other beforehand and build a relationship, before there was a disaster. when the hurricane hit. the newborn screening program was able to pick up the phone and say that we need help and put this plan into place. what actually happened is that there were state troopers that picked up the blood from hospitals and brought them to the lab. people had met each other before, relationships are so important. so there were state troopers knew what newborn screening was and why it was really important. and i think that is a great

example of why having this type of planning in place is so key and why we need to keep those plans updated every five years. >> it is great. thinking of this situation, having the thought of such a situation. the children do continue to be born during these natural disasters and it certainly shows the efficacy of planning and carrying it out and building those relationships and that is very worthwhile. before the meeting started, we were speaking about the 50th anniversary for this newborn screening in the united states. but what other countries do the best practices in the united states, what other practices are there. can you share this here? >> i think there is interest throughout the world and as i mentioned briefly in the hall, europe has been really

interested in harmonizing this with the members of the european union and that is even more difficult than it is to do between the states. in europe there is tremendous europe, programs that are very similar. it has a very modest number of conditions in the united kingdom and they are moving ahead that is considerable and the discussion about trying to move ahead. in all circumstances they are very interested in how the united states is moving ahead and harmonizing now. sweet are invited to talk with them. many of them have sponsored meetings in the middle east or north africa where newborn screening is extremely well-developed in oil-rich countries such as saudi arabia.

they are more modestly funded in some countries and they have very little screening and it can be particularly beneficial in many countries like africa. because you have a high degree of first cousin marriages. when you have intermarriage, it dramatically increases the frequency of these conditions so that a condition here that might occur in a country with intermarriage, it might occur at one in 5000-hertz i think that there is a great deal of interest in working with these countries to identify important conditions that can be identified and treated simply because they lack infrastructure. so china has a spotty screening program and again they are trying to move ahead with other places like australia and new zealand. but i think that one interesting thing that everyone is

interested with what is happening in the united states, and that's kind of what we have said, someone says if the united states is doing something welled in a kind of tend to follow it. >> okay. [inaudible conversations] >> how important is the newborn screening is it does save lives. i mean, i do think it is really important to reiterate that in 2011 the cdc recognized the advances of this is one of the 10 great public achievements in the united states during the decade of 2001 through 2010. for all of you here today, i really do thank you, in particular, doctor howell, for the work that you and the march of dimes and doctor house have done to make this such a fundamental health aspect in our country. also knowing that we have to build on that and we need to

expand it to get this authorization done. i want to thank all of you today for your testimony. the hearing will remain open for 10 business days and questions for the record. we will now adjourn this hearing. >> thank you. [inaudible conversations] >> on the next "washington journal", we will discuss the continuing congressional debate on federal spending. defining the new health care law, and the possibility of a government shutdown. you can call with your questions and comments to senator tom coburn, it and vermont independent senator bernie sanders. "washington journal" is live on c-span everyday at 7:00 a.m.

eastern. >> the senate has scheduled a number of votes to fund the federal government. the geordie leader harry reid and republican senator mike we objected. we will have that exchange in a moment on c-span2. the congressional budget office director testifies on capitol hill. and later, a hearing on newborn medical screening programs. >> the majority leader. >> as i have indicated for the entire week, each day that goes by, each hour that goes by, we are we're that much closer to a government shutdown. and i have been told that the needs more time to work on this. saying that maybe what we need

is an extension of this. madam president, the stock market and the business roundtable, the american chamber of commerce, 80% of the american people, including 75% republicans says what is going on here is not taking care of the finances of this country is absolutely wrong and there is no reason to stall this. so i ask unanimous consent that at 6:30 p.m. today, all be yielded back with the exception of an hour with the first 40 minutes of that hour that people are invited to vote cloture. in the last 20 minutes reserved for might have in the final 10 minutes and senator senator mcconnell. the senate proceeded to vote poacher on this.

and we will read back the amendment 1975 with the majority being recognized with this budget point and emotional wave is agree to with the amendment. excuse me, 19endment. excuse me, 1974, the joint resolution in the senate proceeded to vote on passing the resolution finally for the first vote of the sequence in 10 minutes and there will be two minutes equally divided between the two. i would just alert everyone that we would vote up to four times around 7:30 p.m. this evening. the house will get the bill and cloture would be a vote on hhs

59, with the budget points to order. the reed amendment number 1974 and passage of this as an amendment that was amended. that is my request. >> madam president? >> is there objection? >> the senator from utah. >> reserving the right to object, if we were to vote tomorrow and have these votes tomorrow, that would represent a product of waiting to separate periods, another in connection with the cloture on the vote. the cloture on the vote, the american people people are watching this and have expected this might occur friday or saturday. so i asked the question would the majority leader be willing to modify this the same provisions in place with tomorrow's session at the senate. >> i appreciated. >> is the majority leader have a

comment? >> i request to modify my amendment, i'm sorry, my unanimous consent request. madam president, my response to that would be reserving the right to accept us. everyone in america, everyone knows what the issues are before this body. and the amendment in the mikulski reed amendment that we require a vote on is pretty simple. it says that there will be nothing done with obamacare and changes from november 15 to december 15 and that is it. the so-called anomalies we have met with the republican leader and staffs have gone over there, no problem with that. so this is an effort to stall things and i don't know why. an effort to stall. it is absolutely unfortunate

because i repeat that every minute that goes by is a minute closer to a government shutdown because when we finish this, we have to then help the american people focused on whether or not we are going to have a bad feeling and whether or not we will again crash the economy as we get last time that threat came. unless it was maybe someone who thinks that they can comment with their greek speaking ability tomorrow, to change everything, everyone in this body knows how the votes are going to go. this is going through the house of representatives and the house of representatives have said that publicly and privately, they're going to send something back. now, i want to make sure that if they do that, it means that we may not get it until sunday if we stall. we will try our utmost to get it

to them tonight, rather than sometime late saturday or maybe sometime in saturday. and under our rules, is this some kind of a subterfuge for the closing of government? because that is what is going to happen. we are not the house of representatives. and we have rules here and i understand my friend has 30 hours and we are moving more quickly than the rules require. madam president, with the american people see here in the senate is on everything is hitting a big stall. a big, big stall. wait until tomorrow, maybe we will give this great speech and we will turn the world around. this is senseless. the american people, how many

times -- 80% don't agree with anything, they think what is going on, that's big stall -- that it's bad for the country, and it is. so i do not accept the modification. >> madam president? >> if there is an objection to this and objection to my request, i will work it out with a republican leaders asked what time we are going to do that. >> madam president? >> is there objection? >> that a president, observing the right to object. >> the senator from utah. >> we have been willing to compromise. the offer that was made by my colleague, the senator from texas yesterday, from the floor. represented a significant compromise. significantly i believe it was the senator from nevada, the majority leader who objected to a unanimous consent request made yesterday from the senator from texas to proceed with having these votes tomorrow. it still represents a significant compromise that consolidates and collapses to 30 hour periods by the rules.

this is not an unreasonable request and moreover, not understanding what it is about having a vote tomorrow morning instead of tonight that would make a difference to get something to them tomorrow with which it will be part of sunday. >> madam president, -- >> i want to yield to the senator, but i do want to say this. it is obvious to me and it is obvious to me as it is prekindergarten student, they did not want to vote yesterday in the big speeches you've heard, to extend cloture and extend obamacare, this is a big, big charade that is not getting them where they need to go. they want to stop obamacare. they even want to vote on

cloture, of course they wanted to skip that and do that so they could talk longer. people are tired of talking. they want us to get something done here. the government is nearing the time it will close, as i said this morning, a woman who works for the park service, she and everyone that works there or are afraid they're going to lose their jobs at the park service. last time they were laid off for 29 days and didn't get paid for it. so i yield to my friend from tennessee. >> been president, i wonder -- >> the senator from tennessee. >> would be appropriate if i were to ask the senator from utah a question if you take a question. >> without objection. >> this is been a rather confusing week, no. we have had a 21 hour filibuster .

and the persons carrying out the filibuster voted for the issue that we are filibustering. i don't think that it's happened in the history of our country and i just want to make sure that we understand that i was just over at the house. and i talked to members of leadership at. the link to get a piece of legislation over there as quickly as possible so they can respond. i think all of us on the side like to see some changes to the cr, one that we believe to be good policy. we have a majority of republicans i know that they would like to send back to us and changes that i think many of us would like to report. in talking earlier with the senator from texas. it is my understanding that the reason that you don't want to send the bill over to the house, you could possibly put in place some very good policies for us here. it is that you want the american

people in the outside birds verdict that you have been in contact with to be able to watch us tomorrow. and so i'm just asking the question. is it more important to the senator from texas on the senator from utah that the people around the country watch this vote, or is it known more important to us that we have a good policy outcome from our standpoint and actually have a body that has a majority of republicans to be able to react in some back something of this policy and this is confusing to me. because i know the leadership there wishes to be able to respond as quickly as possible but i understand the reason that we are waiting is that you all have some out releases and e-mail us and we want everyone to be able to watch this and this doesn't seem to me that it is in our nation's interest, nor is it candidly in the interest of those who want to see policy on the conservative side come out of this unless wondering if

you might respond to that. >> the senator from texas. >> the senator from tennessee has made reference to me, i would ask unanimous consent that i might engage in a cloak of with the senator from utah. >> is there objection without objection? >> is there a reasonable time? >> will there be another performance -- [inaudible conversations] >> how long do the senators wish to engage in a colloquy? >> i cannot imagine it will extend beyond 10 minutes. >> is there objection to the request. >> without objection. >> madam president, i appreciate the senator from tennessee's comments and supporting the majority leader. in other senator from -- [inaudible conversations] >> and other senator from tennessee is learned on senator

procedures and another he must have made a misstatement when he moments ago suggested that those of us who participated in the filibuster the other day somehow changed our position in voting for the motion to proceed in the and the reason that i know the senator from its tennessee is mistaken because during the course of that filibuster, i explicitly state that the motion to proceed and i see about a week before the filibuster, repeatedly. ..

>> is studying in favor to grant the majority leader the ability to fund obamacare. i am sure my friend from tennessee and a stand that said his motion to proceed i know that was a statement in error. >> actually i appreciate this opportunity. what we have before us is a

bill that the funds obamacare. the bill that the house has sent over. you are right. tomorrow's vote is a vote to end debate for exactly what the house of representatives has sent over that is confusing the you are exactly right. the house actually has a policy that i support that is the funding of the health care bill because of the damage it is creating to our country. i wish our number was a little lower to wish 967 instead of 988 but that is right. and we will be cutting off the base on the bill that the house republicans has sent over to us. you are exactly right. that is an important vote. that is a vote in support of

the house. something in addition to supporting the house but getting it whatever we do back over to them so it is my understanding again, relative to this boat to night happening tomorrow instead my two colleagues that i respect have sent out e-mail's around the world to turn this into a show possibly and therefore they want people around the world to watch on the senate floor and that is taking priority and over getting legislation back to the house before the government shut down and also to put in place of their policies. >> i appreciate your comments and i would note this is confusing i don't

think it is all the confusing. the senator from tennessee set this up a vote in favor of cloture is in favor of funding obamacare so of that is the case plays majority leader harry reid will vote the same way you will both why will every democrat proposing to vote the way you will vote? if it is about de-fund obamacare if they are confused? >> i would respond after a 21 hour filibuster yesterday , you voted in favor in senator harry reid joined you also so it seems they are very similar. >> to the dispute is about to take up the bill where the vote tomorrow when it is

a field of republicans are at the democrats it will what makes it is significant is the majority leader has filed an amendment that got the house continuing resolution and given that that is pending to be passed with 51 votes the senator from tennessee disagrees. harry reid in the majority leader can find obamacare with 51 votes. >> i agree it allows post cloture votes at the 51 vote majority has been there for decades with a save rule we have operated under for decades. so we had a bill before us

that i see the senator from texas supports so my question is we have a bill that we support that has been here for decades are generations or centuries in many cases, are rethinking the house of representatives i'd like us to vote against cloture on their bill? let me ask you this. if this is what they wish for us to do why isn't there already developing language and legislation to send back over? it seems they have already indicated they look at the strategy as a kenyan because the industry in the senate rules it looks like they're already developing language to send something back over because even though we're in the senate and the relatively new, how they

knew the senate rules before they sent it over. i am confused. tell me what happens if you do not invoke cloture. i would like to understand. >> i appreciate that question and there are several pieces asking if the house republicans do not invoke cloture i could tell you this morning i spoke to over a dozen house members said explicitly said it would be fantastic if said the republicans could show the same unity to vote against cloture because majority leader reid has filed an amendment to get the language. senator from tennessee expresses confusion idle think the american people are confused. i would ask the senator from tennessee in you agreed one moment ago if i understood

correctly that the 60 senators vote in favor of cloture then harry reid can't put the above a share in its entirety. if 41 republic goods stood together to vote against cloture because we said we do not support the amendment that he has filed a we said we oppose obamacare so we will not become closet to give perry be the ability to fund obamacare. could he proceeded 41 republicans stood together against cloture? >> i think the senator from texas may be confused. we will not be voting on the amendment we go out of that after the vote on cloture. the vote on cloture tomorrow is a boat on ending debate on the bill that we support.

>> the time for colloquy has expired is darr objection to the unanimous consent request by the majority leader? >> the senator from utah. >> i will modify their request made by the majority leader. in light of the fact he has turned it down. i object. >> the assistant majority leader. >> madam president what we just witnessed was an effort by senator harry reid to move the critical votes to keep the boats open what we just heard is they've want to stall and delay even more. this is just a matter of losing the legislative battle. >> the title is still under the control of the republicans. >> how much? and what was given to

senator grassley so how much time is remaining at this point on the republican side? >> the alternating time ochers at 4:30 p.m. >> than the democrats are recognized? >> that is correct. >> what time is it now? >> 4:29 p.m. >> madam president, madam president? >> senators are reminded to address each other in the third person not by the first and last name. >> the senator from tennessee? >> in response to my friend from illinois is not the republican side we only have

two republican senators wanted to push them so i don't want that to be mischaracterized in to say it is my vendor standing the reason we put this off because they would like for people to run the country that they have notified to watch so it is that process to make sure everybody watches that i think this will bring this down not the entire republican side i know most always follow the vote and the like to give the house the opportunity to respond in the appropriate way and with that i yield the floor and i have enjoyed this very much. >> the next hour is controlled by the majority. >> the assistant majority leader's finigan restart by acknowledging i have worked with senator corker in die salute him.

what he said is indicative of the problem that we face now, two senators that is there right the senator from utah and the junior senator of texas decide if they want to delete this another day. it is not just losing a legislative day, it is more. lookout what it took us to bring of the house continuing resolution. we're thinking about voting on it tomorrow. it tells you the senate rules even at with their vast means that the measures take a long time ordinarily means we just waste time but this time it is critical because the government will not be funded so until tuesday morning all across america we will not fund the government because of the actions taken on the floor

from senator lee of utah they are trying to create a political crisis. they play high-stakes poker with other people's money because the victims of this political crisis will not be that house members but innocent people, a lot of workers across america who just want to get out and do the work for the government to make his greatest nation summer risking their lives uniform but to me that have to contact wise and spouses back home if this delay continues to say it may be difficult it doesn't look like we will get a paycheck because congress has shut down the government. thousands that do their work

fbi intelligence agency will go dark. why? why have we reached this point? why have two senators, two senators think this is in the best interest of the united states of america? this cannot help our nation and shutting down the government we will find ourselves in a position where the economy will start to stall the will notice the investments are going down in value. why? because two republican senators insisted we could not speed up the vote to move the process to solve the problem. they notified their friends in the media and on e-mail death friday will be the big day. the big day in the sun so they will delay our actions for a full day so they king

give adequate publicity for what they are about to do. that is not the best interest of the senate or seven not united states of america. senator reid made efforts to come forward to expedite the process people told us if you send this back senator reid said from the start we will not delay this critically important decision we will move this through quickly and we have. at this point it is on the shoulders of those two senators those who have decided that they want to close down the government upheld a come closer to run the risk that is not the best interest of the issues that face america. my job is to be the chair of one of the most important subcommittees' the defense

department i never dreamed i would have this responsibility but this mantle fell on my shoulders. almost 60 percent of all discretionary spending -- funds goes to this one subcommittee there is a lot of hard work but if you consider the responsibility we have come it is substantial. the men and women in its uniform those the keeper country safe, let me tell you what a government shutdown will mean to them. it will mean a lot of hardship troops calling spouses to say we will not get a paycheck this month. make do. something totally unnecessary. brought on by action on the floor just minutes ago by

two republican senators. more than 700,000 civilian employees will be sent home immediately minute women who work of military installations, is sent home from work over 80 percent work outside the pentagon there will be given notice tuesday morning they have to go home. why? because of the promise made for publicity that is unacceptable. a substantial number of these men and women will be furloughed because of a sequester now if we allow the government to shut down once again commanded in women who were just trying to keep us safe, and many risking lives will not be caught in a political game. is unconscionable the list of national security imposed

by a shutdown is not confined to the military but crippling our intelligence community. they serve as our first line of defense we rely agencies to warn us of threats lawmaking critical national decisions they overwhelmingly made up of civilians the greatest portion furloughed because the government shut down is totally unnecessary brought down by the house republican in the senate republicans this will be quick in those agencies will go dark within four or eight hours of the order america and its intelligence agencies will go dark because of this political strategy of the government shut it down all dod works closes the bases will monday maintain the to

see a degradation of facilities. you will see mass destructions a critical arsenal that supports more than 54,000 retired military the largest employer in the iowa / i wear region within 70 commercials adding $1 billion to the local economy to support 14,000 jobs in the region it will throw production schedules into chaos as civilians said at home under for low. i could not imagine going to these men and women is saying the reason you have had the furlough is to senators decided they needed publicity. putting that capability of risk with the industrial base in the same thing is

true that the air force base you'll shut down those employees the has the same losses everybody else there would have to get back on savings or reserve for later reimbursement rigo said the less and they become totally unnecessary senator reid has come to the floor repeatedly to tell you what the american people say, 80 percent think this is foolish and wasteful. 75 percent of republicans have given up on the strategy but yet i handful of willful members of the house and senate decide they will keep going down this road. i help they will have revelations in the next few minutes or hours or overnight to reconsider what they have done, the risk

they put this country act is not appropriate. is not fair. i listen to try to explain toe a full of filibuster 21 hours then vote for the next item up on business. the senator of texas thinks he a understands clearly but most americans don't understand what he was saying 21 hours then voting to move forward to make one thing clear obamacare this is already funded senator harry reid will not be harry reid will not be defunding obamacare it will be under appropriation bills that we have passed so the notion that somehow he will do something sinister let me remind the critics we brought this to a vote in the senate senator reid you may remember our colleague

senator kennedy was brought to the floor to vote for the affordable care act he was literally dying of cancer but this meant so much to him he came down for the vote the great personal risk and sacrifice we knew we would never see him again. we did not. the votes were taken in in the next election there is a referendum. the american people were clear they reelected president obama and rejected the governor's -- governor romney's promise to repeal obamacare they just cannot accept history they want to fight the battle for but they fight it at the expense of a lot of innocent people across america in the best workers in the world those in an military uniform and a civilian capacity. they do a great job for us

every single day. so to make him an object of this political exercise with this institution that me close by saying i will give credit to senator cruz with his 21 hours i asked him point blank triage to eliminate the protection of obamacare the says health insurance companies can discriminate against children and families and pre-existing conditions? we mckee said yes i do or want to eliminate all of it. i said to want to limit the position you cannot limit coverage so people have enough money for a serious illness he said i want to eliminate it all. you want to eliminate the protection for families to keep their kids on their own health insurance through 26 those are looking for jobs you want to eliminate that? >> he said the eliminate every bit of it and was consistent.

consistently wrong because the interest behan's -- fails to understand what americans face every single day with uninsured americans with no peace of mind the parent of a sick child without health insurance. i have been there you don't want to be there in your life or for anybody else. i ask senator cruz to tell us about his own personal health insurance and he decided he would be the arbiter it will not give me a straight answer how he gives insurance for his family he told this wonderful stories but with this issue he should tell us where it is to get health insurance? who pays for it? what is the employer contribution? what is the tax contribution? these are legitimate questions he has raised these with families across

america but let's hear his explanation and however texas family i don't think that is unreasonable. madam president i yield the floor. >> mr. president support the democratic amendment to the house continuing resolution. we have offered this amendment because its content offers a clear path for word to do three things. number one, avoided government shut down. negritude to lay the groundwork hopefully the next two years which means finding a way to reduce public debt in each year by $100 million and a number three, two get rid of the theatrical veto date

provocative amendments in the house bill calling for the de-funding of the president's affordable care act and also for the way they structure public debt. we offer this amendment because we think it is the best way forward. the american people expect us to do our job. it is now thursday morning morning, 45 a.m. and we're just on the amendment. why? the last several days we had to put up for theatrical politics rather than get the job done. senate deliberation. we're supposed to be the greatest deliberative body to the greatest delayed body the american people are fed up and so are we here. when all is said and done

now this is the time to act. we have an amendment on the floor open for full debate in the ipo for that but we need to get the business of government to do our job. we must replace the sequester. to allow the appropriations to move forward before the end of the year. now that alone shows what is wrong with communicating with the american people. it is factually accurate and truthful but nobody in the stands sequester or the words like omnibus aaron and nobody in understands what we're doing first of all, will be our not doing. there was an invention of

congress by the president to say we will reduce over a 10 year period by $110 billion per year if we fail to do it in a balanced way a review of mandatory spelling it if we fail to do that, if we fail to do that, sequester triggers across the board 50% defense 50% domestic. the problem is it cuts good programs as well as those that are dated or dysfunctional. i would rather make a strategic cuts to the

appropriations committee before the last year our committee has done its due diligence to put them into the federal checkbook to bring it to the floor for debate if for passage to send to the president. what we want to do in this bill is change the date from december 15 back at november 15 to keep the pressure on to get the deals needed so congress can get to work to have 12th fiscally responsible appropriations bills lay the groundwork for two years and invest in america's needs today and the needs of the future. this prevents a government shutdown the president of

torrey said he will veto any bill that defunds obamacare. he will veto any bill that undermines the full faith and credit of the united states. you key in a huff and puff for 21 hours but you cannot blow obamacare way. i will repeat. you can huff and puff for 21 hours but you cannot be like the magic dragon that blows the affordable care after a way. if we pass that affordable resolution it will be vetoed. another waste of time to get the job done the agencies instead of doing the job making use of taxpayers' money to be responsive to the american people they spent their energies to plan for a shutdown that amounts

that the president can send -- a sign the continuing resolution if we pass the senate amendment cheapening the government open through november 15 coming cancels the provocative elements elements, and also lays the groundwork for moving forward. there will just be a few things that will happen if we cannot have a continuing resolution. there are consequences here. this is not just about showbiz. government has to be open for business. they will be sent home or furloughed. what does that mean? if you were the fbi agent

during this time you will be doing your job the way you were working you will not get paid but a and i know you. what does that say to people who put themselves in the line of fire? we will shut down the government means that we will affect crucial research jim life saving discoveries so put on hold. the nih could not start a new clinical trials for patients. food safety inspectors inspectors, those involved with public safety are at their duty station but they are looking into across-the-board cuts but we have already said there will not be increased over three years in every one to recruit the best in the

brightest but with the drug approval process it will be sent work that is dirty and dangerous? water we doing here we show contempt for those who work for the government and that shows the people who pay for it to. added people but the way they work hard but they insist they do their job but then also. i chaired that committee is made up of 12 subcommittee

you could here's to the chairman throughout the day. i am so proud of them. for the last year they have listened and taken the the review did in base plan dash grabbing and analyzed it. i am proud of them and from what they're ready to bring to the floor keeps a vision and purpose is intact the wide use of taxpayer dollars hess with to every single hearing to inspector general's where we learn about the daily dysfunctional or duplicative and we're ready to move but we can move with the theatrical showdown politics. this has grave impact we are here and eventually will be slowed down through a sequester but what we're

facing here has a negative impact on our economy to add to the uncertainty of businesses to make wise decisions. it will often slow down the impact of jobs with infrastructure and other needed programs and impact public safety impact the future generations because of the head of research and development that comes up with the new ideas with a new jobs. later i will talk about the nih that is in my state. now. >> thousands are working for private or thousands are working for the united states of america. at the end of the day they tried to come up about

saving lives, doing the basic research of jobs and biomedical and pharmaceutical also to improve the lives of our people, our economy, to get the job done. mr. president i want to turn because we did not analyze how to give value for the dollar in to care for the sec can feed the hungry here in the a around the world. also to make sure that importuned private sector of the economy is viable.

i read -- yield the floor. ? the book tells a story of?? a nuclear weapons accident??? in damascus arkansas in 1980?? and i use that narrative as??? a way to look at the?? nagement of our nuclear weapons. but said there -- they're still capable of being used ere probably no more important thing that our government does is that

[inaudible conversations] >> the hearing will come to order i know we still have conference is going on and so some will be here later but we wanted to get started as close to one time as we can. his has been awhile since we have gone back together as a committee with a new report were the of our attention. also a bid to seize cbo does bill mundorf again take you

for putting up with this valuable report and reno would it takes. your report makes one thing clear we have not solve a problem yet we make too much money. affected but according to your report is tightening in the point in history except world war to propose some people think just because the deficit is when chilean dollars but the hell step was 39 percent of gdp. today it is 73% parker has doubled in just five years. to dave we were to have an emergency, we will have a lot less leeway. when you owe more than you make your creditors get

nervous income looking. the problem is they can cut us off at exactly the wrong time. we heard talk how we need to pay our bills but we need to make sure we can pay them today and tomorrow. look, we know what drives our debt is spending especially on health care. the cbo said most spending growth will be medicaid and medicare in the next 25 years it expects spending and health care programs to grow by 74 percent or maybe as much as 83% again all the spending what do we get? the medicare trust fund will go broke in 10 years after payroll goes up after the cuts after the sequester made even more cuts with all of these adjustments especially with the health care law were supposed to pass but instead we took on more water.

clearly it is not enough. the report said the sooner we get to work the better that is an important point. you looked at the spending package that would have saved $4 trillion that is roughly what the house passed budget would do. reenacted such a law of the spending package interest rates would be 1% lower and our economy would be 10% bigger in the publicly held debt was be just over 31 percent of gdp but on the current path interest rates will rise, our debt will grow and every economy will be 4 percent smaller. what does that mean? $3,200 less per person in america at that time. the best illustration is the fiscal gap. what does it take in spending cuts are tax hikes to keep our debt stabilize? if reject action not it would cost $145 billion per

year but if we waited it could cost 350 billion per year. we have 1 foot on each side of the crater and every day grows larger. every day we wait it is harder to bridge some gaps. washington's model is not to do today we can put off until tomorrow but it is closer than rethink and we know what the answer is. with real reforms we can help grow the economy to put people back to work. it is not ability. it is a matter of will and with that i'd like to recognize the ranking member for his opening remarks. >> think you mr. chairman and want to join the chairman to welcome you mr. l mundorf powless of the budget picture through the year 2035 clearly demonstrates on the current trajectory clear on in the unsustainable path with the debt. it indicates we need to move

forward on two fronts. first, have to act now to kick our economy into higher gear. there were eight but one way to do that is to replace the sequester right now. fatwood costas that is one that this country could not afford more people could be put to work if we take care of that issue now democrats in republicans have tried to get a boat to replace the sequester but to go in the

same reduction but to go into the hundreds of thousands of fewer jobs than we can do that. we should act now to put in place of plan it should we recognize the framework set every bi-partisan. >> i bet the overall framework but we look a special interests. the house democratic budget budget, and they all take steve balanced approach and powell could reduce that.

but said affordable care iraq that already provides health protections to millions of americans is to provide millions more access to affordable care in the days to come. right now we will position of our colleagues of taken that we don't accomplish the goal to do shed down. . . . .