administration agencies to network with them and to become involved with them. and to open up the doors to what the state may have to offer in terms of helping out with this. many times, veterans -- employees are just not aware of the scope of brain injury programs. and frankly, because this has become the signature injury of this war, this is the first time that people started looking about -- at these other programs that were out there, dealing with people who had acquired their brain injuries in a different way other than combat. >> thank you. dr. ashley, you described the skraeshlt and post acute care. what are the factors that cause this variability, and also describe tation of children versus adults. >> well, yes, sir. the first part of your question is what accounts for the variability. it begins with a lack of understanding of the condition

itself. as i mentioned earlier, in the general medical community and in the payer community, there is not good understanding of the neuro physical logic of plasticity as a recovery mechanism for brain injury. it used to be thought what you see at six months is what you get. today we understand what we do in the environment by creating appropriately structured demand, reprograms existing cells to take over function, or induces growth in the brain for new development of -- or excuse me, development of new structures to take on function. so without the proper knowledge in the medical community or in the payer community that underlies this, it's treated as though it's a broken bone. broken bone takes six weeks to heal, and we get two weeks or so in rehabilitation for the brain. however apprri

policy in insurance plans that was designed for and orthopedic rehabilitation. four decades ago, when it first came into being. it has not morphed into covering the rehabilitation needs that we now see with surviving neurologic injuries. so we spend a great deal of money to keep a person alive, and we basically spend no money to give them any quality of life afterward. and the injustice here is that i to do it. so we're simply withholding this care, calling it something other than medical treatment, and constraing it policy by either license you're restriction or by benefit restriction, one or both. apolo. the second part of your question. the difference between children and adults. >> yeah. >> it's -- euphemistically, it's said that children are not little r. winston touched on

it very nicely when she indicated that the patho physiology of a child's train is substantially altered with an injury, and differs substantially from adults. one of the areas that we have to really investigate has to do with the onset of lifelong disease processes that arise from the changes in the brain metabolically and neuro physiologically. once altered, it's difficult to know if these changes actually revert to normal or not. there's great suspicion, for example, in pediatric injury, that neuro enthrow crin abnormalities relate to further mature appropriately. as a consequence, we have to call into question the role of even a cult brain injury, much less more obvious brain injury and conditions that might lead to dyslexia, agraph i can't, confidentiali

confidentiality difficulties with reading, writing, math and so on. that we have bundled under learning disabilities as an example. further, as we see the difference in medication differences, fa pharmacologic interventions that are not effective with children or put children at risk that can be used in adults. and then, of course, we have the real social dilemma in terms of how we treat these children. it's difficult to amass them in a single environment and take them out of their cultural surroundings, family, school, et cetera. and so unfortunately, because of the vagaries of rehabilitation coverage, the schools do end up being the de facto rehabilitation setting. it's not what they're trained for, it's not what they're prepared for. they certainly have stepped up and tried to address the problem. but the medical rehabilitation of children really ought to be left to medical professionals.

>> mr. chair, thanks. i recognize the ranking member for five minutes for questions. . thank you, mr. chairman. i wanted to ask dr. winston, you described how the majority of research is focused on traumatic brain injury for adults and you mentioned the need for focus t new safety products, programs and policies that will reduce se it seems you believe there is an possibility role for nih and other federal agencies and congress to build research on pediatric brain injury. but could you just share your perspective on specific pediatric research questions that could be further or should be further explored? >> thank you, very much for asking that question. i think that we need to build up our scientific foundation so that we can improve and bemo ca our care. i like to think about it in five

categories. first, to prevent -- toevenon s neo what, where, when, how and of pediatric injury. we need to -- using bio mechanics, behavioral science, weemeed to improve our methods and measures for studying, diagnosing and following the course of tbi. bio markers are also important. we need to conduct -- work to know what works and what doesn't. what -- how to improve on therapies that are currently done. how to deliver it in the best ways possible. we need to know how to get state of the art to the field, to the front line. and we need to support innovation research for the development of new safety products, bio markers and therapeutics, and we must not ntiset to train our next of pediatric injury. there are two resources that i call the committee's attention

to that would be able to give you more complete answers. trying to be brief here. the first is a very exciting initiative that i was part of -- actually, both i was part of, that will be released by the cdc i think next month. and it's a national action plan for child injury prevention. it provides action steps in research, data, education, health systems, communication, to prevent child injuries from occurring. it also seeks to incorporate child injury prevention into existing systems and strategies at the national, state and local level. a second very exciting initiative is the national institute of child health and development. interested in child injury. and i -- i applaud leadership for their interest in this. the society for the advancement of violence and injury research under the direction of the president, dr. fred rivera, tapped into experts in the field and enumerated important next

steps in child injury research. and i recommend you get ahold of that as well. so from a personal perspective, there's a range, at de need to . but i think that we can prioritize and we should. >> of all right. thank you very much. let me ask -- i know we're running out of time again. but dr. ashley, in your testimony, i'm struck by the continuing care that's needed for people with traumatic brain injury. and you stated for those americans who experience moderate to severe traumatic brain injury, the recovery often extends beyond hospitalization and requires rehab. you also testified it's the start of a disease -- causative and disease excel active process. can you elaborate the extent they're lifelong conditions? >> yes, sir. the difficulty that we see, of course, is that anything and everything that a human being does is mediated by the brain.

so when the brain is injured, the potential for impacting any and every organ system in the body and its function exists. at the most basic level, when a brain cell is injured, and you have 100 billion of them, that begins a neurodegenerative process, the end of which we're not sure exists. in fact, a few hours after an injury to the brain we'll see inflammatory processes around the body initiated. in about a third of all individuals, late in life we'll see those same processes reinitiate. so we change how the brain's bio chemistry works. the brain functions in various degrees of bio energetic crisis following a brain injury, almost indefinitely. as a result, what happens is the tremendous stress within the system that triggers a number of degenerative processes. so we're beginning to reconsider

a lifelong diseases -- or diseases we've known lifelong as parkinson's, lot row sclerosis. huntingtons and so on as lipid metabolic disorders that may have an origin after a brain injury. you see this made manifest over retired athletes with repetitive concussions from the sports legacy institute and the work being done at boston university on the posthumously donated brains of retired professional athletes. we see the changes in the brain and a condition called chronic traumatic encephalopathy that's been identified as a single example these lifelong conditions and progressive conditions. >> thank you. thank you, mr. chairman.

>> of chair, thanks. recognize the gentleman from illinois, mr. shim kiss. >> thank you, mr. chairman. i apologize for not being here for opening statements. i was giving a tour of wounded warriors in the capitol, and they just left, and it gave me time to get back here and so in that venue, obviously, some of my questions will be asked. but i -- just at the outset, dr. strickland, we think it's applaudable for us to try to organize these agencies and try to maximize the focus. we know that you got federal inner agency committee, the federal clearinghouse, the federal inner agency for database. regeneral active medicine. how are you going to try to -- how are you going to try to coordinate these groups? i think everyone knows, and the president has also said, we've got to get efficient.

we've got to pare down redundancies. who you how going to do that? >> i should clarify, the committee that hrsa is convening is really not to achieve that intraagency. >> do you think that's an important thing to do? >> i think it's a very important thing to do within each agency. ours is more of an informal group so we canher agencies are better align what we're doing with our scarce resources with the resources of others. there is certainly still a need for agencies to coordinate their activities within their own agencies and dedicated activities of similar interest and similar focus. >> and i think we're going to try policywis wise to really streamline this process of not just in this area, but health care research dollars. because we do seem to have sometimes multip agencies

doing similar things, but they're not coordinateinan back information, and there's not one clearinghou clearinghouse. so we're getting a return on that investment, but the question is, are we getting a bigger return on investment as we should? and that's not even in your own agency. that's some of the health care research is in the department of defense, as you know. and the like. let me go to mr. dittio. how many states are working with returning service members or veterans? >>o. how many states are working with returning service members or veterans? >> give me a quick number? probably 15 aware of. some states are very advanced in this. massachusetts, for instance, versus a very involved, elaborate program they've been working on for years. but they had a lot of commitment of resources at the state level that helped to bring this collaboration together and to work on it. what

the standpoint of our organization and representing state governments, is that we just don't have every state working on this. but every state has returning service people. so right away, we're in sort of a difficult position, because we're really not necessarily reaching people. the other thing is, and i'm sure it's no surprise to you, most of the public entitlement programs across the country, especially like medicaid, become the payer for long-term care services for people with various disabilities, including brain injury. and most states are seeking to reduce and decrease their expenditures under the medicaid program for various reasons. and it worries me, because what's happening is, in some respects, people with brain injuries are just being mixed in or lumped in states with other groups of people with disabilities, and yet, as you've heard from the experts, the treatment and the management of

these individuals is quite different. we're looking at quite a different approach to doing something. and it -- because it's a lifelong disability, and because the impairments persist overtime, over a long period of time, it really requires a lost resources. and states -- i don't think states don't want to do the right thing. i think they're just having a very difficult time with the funding. and, you know, with constrictions and programs and with the small amount of money that hrsa gets to support through the tbi act, what needs to be done, this is -- y the system is not -- the amount of money that is being given to hrs j is not magnitude of the problem of brain injury. that's the simplest way i can say it. >> we appreciate that. what about -- in coordination with states and how are the veterans organizations linked in? at all? >> veterans' organizations are linked in. and, in fact, we've had some

very excellent -- we had some very interesting developments in a number of states, where the national guard came to the state and said we'd like to do something with the people we're sending out, you know, on -- to combat. and so they were pretested before they left on assignment with a base measure of their brain function, et cetera. and then when something happened to them and they returned home again, they were retested. and is because of the baseline, there was an ability to determine whether or not any brain damage had been sustained. then plan appropriate treatment for them. so both the local service the state veterans service organizations, as well as the federal veterans department veterans' affairs i think are all very interested in this. and nasha has tried to work with these organizations and encouraged our states to work with them. but when we ended up with 21

states getting grants from hrs j, it made it difficult for the rest of the states to get replacement funding from are the legislature and the governor to full the void of trying to continue the momentum of this. >> and my time is expired. i appreciate the answers. i'll just finish on this. i mean, especially your last point. because as members of congress, one of the things we do numerous times, is we do constituent service, and we do a lot of veterans' affairs issues. and do have a baseline on disability and percentages and be able to get through that system sooner rather than later, and instead of wheel and some of the lag times, it's just really abysmal. that would be helpful too. so aci mr. chairman. >> chair thanks the gentlemen. dr. winston, i didn't get to you, so i have just one follow-up, if you would. in your testimony, you successed the importance of the golden

window in acute treatment. are you aware of any studies of treatment of children with tbi during the golden window? >> yes. so the question is about the golden window. it used to be called the golden hour. we're now learning that it'simr care for a longer period of time, as we heard terrific testimony on. you know, the fact is that it is very difficult to do -- to do acute care research. and i think that there are -- there's work out there to try to start bridging together emergency departments and hospitals to try to build networks where this kind of research can be done. just beginning. personally, i could get back to you on specific information. but i know a very exciting study with adults found -- just came out from the university of pennsylvania, found that early,

aggressive, expensive care had important long-term consequences. i think that we give -- and i think you would agree, too little, too late. and sometimes too late, too e g we really need to get in there, particularly for very serious injuries. we need to get in there and work with the brain's ability to heal and reduce the secondary injuries that might occur from hypoxia or low oxygen or low blood flow or the rest. i think for mild traumatic brain injury, the window is a little bit longer. it's 48 hours. and i applaud the cdc and others to try to get that awareness out there, that early recognition or response is needed. but i want toel cha, if i may -- give you a challenge that we're experiencing. the growing awareness for early recognition has really turned

into some real challenges by parents who want some answers. they want to know things like after how many concussions should my child be removed from contact sports? for how long are injured brains vulnerable to a second impact? does the risk differ by age, and why did my child get a concussion when they were wearing a helmet? our science today does not answer these questions. clinicians on the front lines are also asking questions. i think you might find this interesting. visits for concussion, because of awareness, have skyrocketed at the children's hospital of 458% since 2009.re network. we're struggling to meet the demand. we need research and leadership to provide evidence-based recommendations. it can't be this broad brush, because we can't afford it and we don't have enough trained

providers. i know that chairman pitts, you have been very, very helpful in trying to make sure that we shore up the training that's necessary for this specialized care that children need. thank you very much for that. we need better standards for safety equipment, bio markers for traumatic brain injury, so we can follow the course of care. better tools to use in the field and in the clinics. evidence-based and tested protocols. these don't exist right now. and then just to reiterate, for the young athlete in particular, their job is not playing on the field. it's actually learning. and we can't forget that. we need to make sure that we protect their brains so that they can become the leaders in society that many of them hope to become. >> thank you. and that effort for the children's hospital gme training for pediatrician was bipartisan. my colleague, mr. voca of that,.

do you have any follow-up? >> no, mr. chairman. i just wanted to -- well, first of all, thank you for what you just said. and your comment about concussions and is sports. i agree. but i just wanted to -- if i could ask unanimous consent, to submit the statement of our ranking member, mr. waxman. >> without objection, so ordered. that concludes our hearing. the members may give you questions. we ask that you respond to those questions once you get them promptly. and i remind members that they have ten business days to submit questions for the record. and that means they should submit their questions by the close of business on monday, april the 2nd. excellent hearing. wonderful testimony. we thank our expert panel for your very important testimony and answers to our questions.

subcommittee is adjourned.

this is c-span 3. with politics and public affairs programming throughout the week, and every weekend, 48 hours of people and events telling the american story on american history tv. get our schedules and see past programs at our websites. and you can join in the conversation on social media sites. a house committee this week gave the federal government a c-minus for its ability to track the freedom of information act requests it receives. the report came out as american university law school held a discussion on transparency and openness in government. the keynote lunch on address included richard huff, former information policy office director. his remarks are 45 minutes. >> we're going to start with our first panel. if everyone could quiet down, i know a lot of conversation is

going on upstairs where the handouts are, and the -- the refreshments. we call that the foya foyer. we acall it that all week long. it looks like the sun is peeking out a little bit, as befitting this freedom of information day during sunshine week. i want to make sure everyone here in the audience knows that we do have handouts, many handouts up there. including detailed biographical sketch on everyone speaking here today. so you'll find that the moderators, including myself, we will not spend a lot of time with respect to biographical details. we'll spend some time on that, because we'll try to get as much content out during the day as possible. and i'm going to sit in on