[House Hearing, 112 Congress]
[From the U.S. Government Publishing Office]



 
    A REVIEW OF EFFORTS TO PREVENT AND TREAT TRAUMATIC BRAIN INJURY

=======================================================================



                                HEARING

                               BEFORE THE

                         SUBCOMMITTEE ON HEALTH

                                 OF THE

                    COMMITTEE ON ENERGY AND COMMERCE

                        HOUSE OF REPRESENTATIVES

                      ONE HUNDRED TWELFTH CONGRESS

                             SECOND SESSION

                               __________

                             MARCH 19, 2012

                               __________

                           Serial No. 112-127



      Printed for the use of the Committee on Energy and Commerce

                        energycommerce.house.gov




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                        HOUSE ENERGY AND COMMERCE

                          FRED UPTON, Michigan

                                 Chairman


JOE BARTON, Texas                    HENRY A. WAXMAN, California
  Chairman Emeritus                    Ranking Member
CLIFF STEARNS, Florida               JOHN D. DINGELL, Michigan
ED WHITFIELD, Kentucky                 Chairman Emeritus
JOHN SHIMKUS, Illinois               EDWARD J. MARKEY, Massachusetts
JOSEPH R. PITTS, Pennsylvania        EDOLPHUS TOWNS, New York
MARY BONO MACK, California           FRANK PALLONE, Jr., New Jersey
GREG WALDEN, Oregon                  BOBBY L. RUSH, Illinois
LEE TERRY, Nebraska                  ANNA G. ESHOO, California
MIKE ROGERS, Michigan                ELIOT L. ENGEL, New York
SUE WILKINS MYRICK, North Carolina   GENE GREEN, Texas
  Vice Chairman                      DIANA DeGETTE, Colorado
JOHN SULLIVAN, Oklahoma              LOIS CAPPS, California
TIM MURPHY, Pennsylvania             MICHAEL F. DOYLE, Pennsylvania
MICHAEL C. BURGESS, Texas            JANICE D. SCHAKOWSKY, Illinois
MARSHA BLACKBURN, Tennessee          CHARLES A. GONZALEZ, Texas
BRIAN P. BILBRAY, California         JAY INSLEE, Washington
CHARLES F. BASS, New Hampshire       TAMMY BALDWIN, Wisconsin
PHIL GINGREY, Georgia                MIKE ROSS, Arkansas
STEVE SCALISE, Louisiana             JIM MATHESON, Utah
ROBERT E. LATTA, Ohio                G.K. BUTTERFIELD, North Carolina
CATHY McMORRIS RODGERS, Washington   JOHN BARROW, Georgia
GREGG HARPER, Mississippi            DORIS O. MATSUI, California
LEONARD LANCE, New Jersey            DONNA M. CHRISTENSEN, Virgin 
BILL CASSIDY, Louisiana              Islands
BRETT GUTHRIE, Kentucky              KATHY CASTOR, Florida
PETE OLSON, Texas
DAVID B. McKINLEY, West Virginia
CORY GARDNER, Colorado
MIKE POMPEO, Kansas
ADAM KINZINGER, Illinois
H. MORGAN GRIFFITH, Virginia

                                 _____


                         Subcommittee on Health

                     JOSEPH R. PITTS, Pennsylvania
                                 Chairman
MICHAEL C. BURGESS, Texas            FRANK PALLONE, Jr., New Jersey
  Vice Chairman                        Ranking Member
ED WHITFIELD, Kentucky               JOHN D. DINGELL, Michigan
JOHN SHIMKUS, Illinois               EDOLPHUS TOWNS, New York
MIKE ROGERS, Michigan                ELIOT L. ENGEL, New York
SUE WILKINS MYRICK, North Carolina   LOIS CAPPS, California
TIM MURPHY, Pennsylvania             JANICE D. SCHAKOWSKY, Illinois
MARSHA BLACKBURN, Tennessee          CHARLES A. GONZALEZ, Texas
PHIL GINGREY, Georgia                TAMMY BALDWIN, Wisconsin
ROBERT E. LATTA, Ohio                MIKE ROSS, Arkansas
CATHY McMORRIS RODGERS, Washington   JIM MATHESON, Utah
LEONARD LANCE, New Jersey            HENRY A. WAXMAN, California (ex 
BILL CASSIDY, Louisiana                  officio)
BRETT GUTHRIE, Kentucky
JOE BARTON, Texas
FRED UPTON, Michigan (ex officio)

                                  (ii)


                             C O N T E N T S

                              ----------                              
                                                                   Page
Hon. Joseph R. Pitts, a Representative in Congress from the 
  Commonwealth of Pennsylvania, opening statement................     1
    Prepared statement...........................................     3
Hon. Michael C. Burgess, a Representative in Congress from the 
  State of Texas, opening statement..............................     5
Hon. Frank Pallone, Jr., a Representative in Congress from the 
  State of New Jersey, opening statement.........................     5
Hon. Fred Upton, a Representative in Congress from the State of 
  Michigan, opening statement....................................    10
Hon. Henry A. Waxman, a Representative in Congress from the State 
  of California, prepared statement..............................    66

                               Witnesses

Bonnie Strickland, Director, Division of Services for Children 
  With Special Health Care Needs, Health Resources and Services 
  Administration, Department of Health and Human Services........    11
    Prepared statement...........................................    14
William A.B. Ditto, Director (retired), Division of Disability 
  Services, New Jersey Department of Human Services, on Behalf of 
  the National Association of State Head Injury Administrators...    23
    Prepared statement...........................................    25
Flaura Koplin Winston, Professor of Pediatrics, University of 
  Pennsylvania School of Medicine, Scientific Director, Center 
  for Injury Research and Prevention, Children's Hospital of 
  Philadelphia Research Institute................................    28
    Prepared statement...........................................    30
Mark J. Ashley, President, Centre for Neuro Skills, on Behalf of 
  the Brain Injury Association of America........................    39
    Prepared statement...........................................    42

                           Submitted Material

Statement, dated March 19, 2012, of Hon. Bill Pascrell, Jr., a 
  Representative in Congress from the State of New Jersey, 
  submitted by Mr. Pallone.......................................     8


    A REVIEW OF EFFORTS TO PREVENT AND TREAT TRAUMATIC BRAIN INJURY

                              ----------                              


                         MONDAY, MARCH 19, 2012

                  House of Representatives,
                            Subcommittee on Health,
                          Committee on Energy and Commerce,
                                                    Washington, DC.
    The subcommittee met, pursuant to call, at 3 p.m., in room 
2123, Rayburn House Office Building, Hon. Joe Pitts (chairman 
of the subcommittee) presiding.
    Members present: Representatives Pitts, Burgess, Shimkus, 
Blackburn, Guthrie, Upton (ex officio), and Pallone.
    Staff present: Brenda Destro, Professional Staff Member, 
Health; Debbee Keller, Press Secretary; Peter Kielty, Associate 
Counsel; Ryan Long, Chief Counsel, Health; Carly McWilliams, 
Legislative Clerk; Katie Novaria, Legislative Clerk; John 
O'Shea, Senior Health Policy Advisor; Monica Popp, Professional 
Staff Member, Health; Alli Corr, Democratic Policy Analyst; 
Elizabeth Letter, Democratic Assistant Press Secretary; Karen 
Nelson, Democratic Deputy Committee Staff Director for Health; 
and Anne Morris Reid, Democratic Professional Staff Member.
    Mr. Pitts. The subcommittee will come to order. The chair 
recognizes himself for 5 minutes for an opening statement.

OPENING STATEMENT OF HON. JOSEPH R. PITTS, A REPRESENTATIVE IN 
         CONGRESS FROM THE COMMONWEALTH OF PENNSYLVANIA

    As many of you know, March is Brain Injury Awareness Month. 
According to the CDC, an estimated 1.7 million people sustain a 
traumatic brain injury each year. And of that figure, 1.365 
million, or 80 percent, are treated and released from the 
emergency room; 275,000 are hospitalized; and 52,000 will die. 
TBI affects everyone. It is not restricted to one race, gender, 
or socioeconomic group.
    While children age 4 and under and adults over the age of 
75 are particularly at risk, brain injury affects soldiers, 
athletes, and even Members of Congress, like our former 
colleague Gabby Giffords.
    The annual cost of TBI is estimated at $48 billion, but 
dollars alone do not paint a complete picture of the scope of 
these injuries. It does not take into account the suffering of 
a person with a brain injury who may be disabled for life, or 
the strain of loved ones that TBI places on family members who 
are so often the caregivers.
    Federal efforts to address TBI began with the Traumatic 
Brain Injury Act of 1996. The act aimed to identify and 
increase awareness of TBI through new research and programs. 
The TBI Amendments of 2001 amended the 1996 law by extending 
the authorization to include the implementation of a national 
trauma brain injury education and awareness campaign.
    The Traumatic Brain Injury Act of 2008 reauthorized the 
program. It also authorized CDC and NIH to conduct a study to 
examine the information gathered by HHS, assess appropriate 
interventions, and develop practiced guidelines. I look forward 
to the results of the study which will come out in November of 
this year.
    The 2008 act also focused on the incidence and prevalence 
of TBI, uniform reporting, and linking individuals with TBI to 
support services and academic institution to conduct research.
    I would like to hear an assessment from each of our 
witnesses of these Federal programs. What have we learned about 
the causes, the diagnosis, the treatment of TBI through HHS' 
efforts? How is that knowledge being applied in real-world 
situations? And I would also like to hear their ideas about 
where we should go from here.
    I would like to say a special hello to Dr. Flaura Winston 
from the Children's Hospital of Philadelphia. CHOP is a 
wonderful institution that has served many of my constituents. 
And I would also like to welcome those with us today who have 
TBI, as well as their families and caregivers who make enormous 
sacrifices every day, and we are glad that you are all here.
    I yield the balance of my time to the vice chairman, Dr. 
Burgess.

    [The prepared statement of Mr. Pitts follows:]

    [GRAPHIC] [TIFF OMITTED] 81424.001
    
    [GRAPHIC] [TIFF OMITTED] 81424.002
    
OPENING STATEMENT OF HON. MICHAEL C. BURGESS, A REPRESENTATIVE 
              IN CONGRESS FROM THE STATE OF TEXAS

    Mr. Burgess. I thank the chairman for the recognition. 
Today's hearing is of vital importance, as the Center for 
Disease Control estimates that over 1 \1/2\ million people 
sustain a traumatic brain injury annually and over 52,000 of 
them do not survive. Of those that do survive, 11,000 are 
children. This makes pediatric-acquired brain injury the number 
one cause of death and disability for children. There exists no 
viable reparative therapeutic option for patients, and all of 
the interventions are designed to prevent progression of the 
injury or secondary injury.
    In order to successfully treat traumatic brain injuries, we 
must equip healthcare professionals and researchers with the 
resources needed to achieve the goal of improving outcomes and 
quality of life for those affected. Although there are numerous 
research projects underway across the country, including the 
University of Texas and North Texas Brain Injury Model System, 
a TBI center, a centralized and coordinated research approach 
that avoids duplication is lacking. And a Government 
Accountability Office report released this January entitled 
``Coordinating Authority Needed for Psychological Health and 
Traumatic Brain Injury Activities,'' it emphasized the need for 
coordination of care and coordination of services in traumatic 
brain injury in patients in the Department of Defense. They 
noted that conducting their research, there was no central 
location to obtain accurate and timely information on traumatic 
brain injury and they had to use a variety of resources in 
order to obtain their data.
    I believe we will not achieve our goals to better 
coordinate research and support services if we don't get a 
grasp, and this hearing is designed to do that on funding in 
projects that are meant to address traumatic brain injury.
    H.R. 2600 would lead State centers, like the Center for 
Brain Health at the University of Texas at Dallas, the 
country's lead virtual center category for pediatric-acquired 
brain injury, to continue benefiting individuals with evidence-
based systems of care. Additionally, the money will be 
allocated from the available discretionary funds and will be on 
hand to advance our knowledge of the brain over the next 
several years.
    Thank you, Mr. Chairman, for the recognition. I will yield 
back my time.
    Mr. Pitts. The chair thanks the gentleman and now 
recognizes the ranking member of the subcommittee, Mr. Pallone, 
for 5 minutes for an opening statement.

OPENING STATEMENT OF HON. FRANK PALLONE, JR., A REPRESENTATIVE 
            IN CONGRESS FROM THE STATE OF NEW JERSEY

    Mr. Pallone. Thank you, Mr. Chairman. Today this committee 
will have the opportunity to hear from some of the leading 
experts in the traumatic brain injury community about an update 
on the current landscape of traumatic brain injury prevention, 
research, and treatment.
    As we all know, traumatic brain injuries are a very serious 
spectrum of disease that can have devastating outcomes. When I 
was chairman of the subcommittee, we held a field hearing 
regarding pediatric sports-related concussions in New Jersey, 
and today I look forward to an informative hearing that takes a 
broader perspective on this critical issue.
    According to the CDC over 1.7 million people are subjected 
to a traumatic brain injury each year. Furthermore, traumatic 
brain injuries account for one-third of all injury-related 
deaths. These statistics only tell part of the story, as 
currently it is unclear how many people are misdiagnosed or 
don't receive treatment after a traumatic brain injury.
    Traumatic brain injury also affects many sectors of our 
population. These injuries continue to plague primarily our 
young people and the elderly, some of the most vulnerable 
members of our society. Traumatic brain injuries also have a 
profound impact on our military and the sports community. In 
addition, I would be remiss, as my chairman said, if I didn't 
mention how a member of our own body, Gabby Giffords, was also 
a victim of traumatic brain injury while performing her 
congressional duties.
    Consequently, we must prioritize this issue in our 
prevention and research efforts. It is my understanding that 
the overwhelming majority of people that suffer a traumatic 
brain injury do not die from their injury. However, that also 
means that these patients are at risk of developing the long-
term implications that can develop from an even mild traumatic 
brain injury. Patients can suffer from cognitive impairments 
like memory loss, impaired communication skills, mental 
illness, epilepsy and are even at risk of developing 
Parkinson's Disease or Alzheimer's Disease. These complications 
can create devastating disability and hinder an individual's 
productivity. They also create a tremendous emotional and 
financial burden to families and society as a whole. Ensuring 
that these patients have access to innovative and vital 
treatments and social services is a great challenge that we 
must all work together to achieve.
    Since the passage of the Traumatic Brain Injury Act of 1996 
and subsequent reauthorization, several Federal agencies have 
led efforts to understand, prevent, and treat traumatic brain 
injury. Most recently, these efforts have undergone formal 
coordination through the Federal Interagency Committee on 
Traumatic Brain Injury. This committee, which includes HHS 
agencies and nonHHS agencies, will hopefully accelerate and 
coordinate developments in traumatic brain injury initiatives, 
and I look forward to hearing more about their proposed plans 
and activities.
    I would also like to highlight the importance of Federal 
partnerships with the States in addressing this important 
cause. I greatly appreciate the presence of Mr. William Ditto, 
who hails from the great State of New Jersey. Mr. Ditto is the 
recently retired director of the New Jersey Traumatic Brain 
Injury Program and also represents the National Association of 
State Head Injury Administrators. Mr. Ditto along with his 
colleagues have made great strides in leveraging their limited 
Federal and State funds to coordinate and provide services for 
individuals with traumatic brain injury. Strengthening 
partnerships like these will improve the outcomes of the 
families and patients affected by traumatic brain injury.
    So I look forward to today's testimony. And Mr. Chairman, I 
would like to ask--as I think you know, Congressman Bill 
Pascrell, my colleague from New Jersey, has really been a 
leader on this whole issue. And I know he is not a member of 
the committee, but he asked if I could by unanimous consent--I 
will ask unanimous consent to include his statement into the 
record.
    Mr. Pitts. Without objection, so ordered.
    [The prepared statement of Mr. Pascrell follows:]
    [GRAPHIC] [TIFF OMITTED] 81424.003
    
    [GRAPHIC] [TIFF OMITTED] 81424.004
    
    Mr. Pallone. Thank you, Mr. Chairman. As I said, I look 
forward to the testimony, and I appreciate the fact that you 
held this hearing today. Thank you.
    Mr. Pitts. The chair thanks the gentleman. And I now 
recognize the chairman of the full committee, Mr. Upton, for 5 
minutes for an opening statement.

   OPENING STATEMENT OF HON. FRED UPTON, A REPRESENTATIVE IN 
              CONGRESS FROM THE STATE OF MICHIGAN

    Mr. Upton. Well, thank you, Mr. Chairman. According to a 
recent report from the CDC, at least 1.7 million folks sustain 
a traumatic brain injury every year. We don't have to look very 
far to see the profound effects of a major TBI. Children 
injured by caretakers or car accidents, athletes impaired by 
multiple concussions, or soldiers disabled from war--and even 
one of our colleagues wounded at a constituent event in Arizona 
last year.
    With efforts being undertaken at the Department of Veterans 
Affairs, the Department of Defense, and several agencies at the 
Department of HHS, it is incumbent upon us to examine these 
activities so that they can work in a coordinated and efficient 
manner. And I proudly serve on the Congressional Brain Injury 
Task Force and encourage bipartisan support for TBI research 
and rehabilitation. And with that support, I am confident that 
the committee will make even greater strides to help patients 
living with the aftermath of TBI.
    So I want to extend a warm welcome to the families 
attending today's hearing as part of Brain Injury Awareness 
Month, and I look forward to your testimony. And I yield back 
to the chairman.
    Mr. Pitts. The chair thanks the gentleman.
    Today we have four witnesses on our panel: Dr. Bonnie 
Strickland, Director, Division of Services for Children With 
Special Health Care Needs, U.S. Department of Health and Human 
Services; Mr. William Ditto, retired Director of the Division 
of Disability Services, New Jersey Department of Human 
Services; Dr. Flaura Winston, Children's Hospital of 
Philadelphia; and Dr. Mark Ashley, President, Centre for Neuro 
Skills.
    Your written testimony will be made part of the record. We 
ask that you summarize your opening statements in 5 minutes.

STATEMENTS OF BONNIE STRICKLAND, DIRECTOR, DIVISION OF SERVICES 
 FOR CHILDREN WITH SPECIAL HEALTH CARE NEEDS, HEALTH RESOURCES 
  AND SERVICES ADMINISTRATION, DEPARTMENT OF HEALTH AND HUMAN 
 SERVICES; WILLIAM A.B. DITTO, DIRECTOR (RETIRED), DIVISION OF 
 DISABILITY SERVICES, NEW JERSEY DEPARTMENT OF HUMAN SERVICES, 
  ON BEHALF OF THE NATIONAL ASSOCIATION OF STATE HEAD INJURY 
ADMINISTRATORS; FLAURA KOPLIN WINSTON, PROFESSOR OF PEDIATRICS, 
   UNIVERSITY OF PENNSYLVANIA SCHOOL OF MEDICINE, SCIENTIFIC 
DIRECTOR, CENTER FOR INJURY RESEARCH AND PREVENTION, CHILDREN'S 
HOSPITAL OF PHILADELPHIA; AND MARK J. ASHLEY, PRESIDENT, CENTRE 
FOR NEURO SKILLS, ON BEHALF OF THE BRAIN INJURY ASSOCIATION OF 
                            AMERICA

    Mr. Pitts. And Dr. Strickland, you are recognized at this 
time for 5 minutes to summarize and make your opening 
statement.

                 STATEMENT OF BONNIE STRICKLAND

    Ms. Strickland. Chairman Pitts, Ranking Member Pallone, and 
members of the subcommittee, thank you for the opportunity to 
testify today on the Department of Health and Human Services 
Traumatic Brain Injury Programs. I am Dr. Bonnie Strickland, 
Director of the Division of Services for Children With Special 
Healthcare Needs in the Maternal and Child Health Bureau at the 
Health Resources and Services Administration, Department of 
Health and Human Services.
    HRSA and our HHS colleagues appreciate your interest in our 
work, and HRSA welcomes this opportunity to discuss our TBI 
program with you and to provide some highlights of other HHS 
activities.
    Congress has charged HRSA with implementing a grant program 
to Sates and American Indian consortia to improve access to 
rehabilitation and other services. The NIH has responsibility 
in the areas of research, and the CDC has responsibility for 
prevention and surveillance. SAMHSA also conducts activities 
through the authorities provided under the Public Health 
Service Act.
    HRSA's TBI program consists of two distinct grant programs: 
State implementation partnership grants and protection and 
advocacy grants. State partnership grantees are required to 
have or develop a statewide needs and resource assessment and a 
comprehensive statewide action plan. With these tools, Sates 
have made remarkable progress in increasing access to TBI 
services and supports through a TBI screening program, training 
health professionals and service coordination. HRSA's 
protection and advocacy programs provide specialized legally 
based services to help recipients understand laws to facilitate 
self-advocacy. Training in self-advocacy ensures that 
individuals with TBI and their families can pursue needed 
services, even if outside representation is unavailable.
    NIH has primary responsibility for TBI research. The 
breadth of NIH research reflects the complexity of the problems 
that TBI represents, both immediately and in the aftermath of 
the injury. For example, NIH supports studies of the mechanisms 
of damage, development of diagnostics and therapies, clinical 
trials and research on brain plasticity and recovery. NIH also 
leads a broad range of research related to TBI rehabilitation, 
falls in the elderly, and disorders that often co-occur with 
TBI, such as posttraumatic stress disorder.
    CDC is responsible for TBI prevention and surveillance. The 
agency disseminates and implements evidence-based TBI 
educational materials and clinical guidelines, informed 
evidence-based policies through activities such as the Heads Up 
Initiative, and educates health departments and community-based 
organizations on shaken baby syndrome.
    CDC also worked with national experts to produce the field 
triage guidelines for the injured patient, which provides 
uniform standards for emergency medical service providers and 
first responders to ensure that patients with TBI are taken to 
hospitals best suited to address their particular injuries.
    SAMHSA focuses primarily on behavioral health aspects of 
TBI. SAMHSA maintains strong partnerships with the VA and DOD 
to prepare community behavioral healthcare systems to provide 
services that reflect an understanding of military culture, 
servicemember's experiences, and the range of potential post-
trauma effects. This is primarily accomplished through SAMHSA 
Servicemembers, Veterans, and their Families Policy Academics. 
Additionally, SAMHSA has developed training materials for 
behavioral health providers who encounter veterans or 
servicemembers with TBI.
    In 2011 HRSA convened the first meeting of the Federal 
Interagency Committee on Traumatic Brain Injury in order to 
share information, facilitate collaboration, and minimize 
duplication across agencies.
    To facilitate this purpose, the committee plans to create a 
centralized online clearinghouse of Federal resources. The 
current representatives on the committee are the Departments of 
Defense, Education, and Veterans Affairs, the Social Security 
Administration, and with NHHS, the Agency for Health Care, 
Research and Quality, the Indian Health Service, CDC, NIH, 
SAMHSA and HRSA.
    Our agencies complement each other's work. For example, CDC 
surveillance may identify an abnormally high incidence of TBI 
in child athletes in a particular State and they may develop 
educational materials to address the issue. HRSA's State 
grantee might then use the CDC material to conduct a statewide 
education campaign for students, parents, and schools about the 
risks and consequences of TBI. Likewise, HRSA's grantee might 
utilize a screening protocol that was informed by NIH research 
in order to implement a student athlete TBI screening program. 
In addition to education and screening, HRSA would connect 
students and families with needed resources.
    Strategies like these allow HRSA State grantees to leverage 
resources of other agencies to identify and serve children with 
or at risk of sustaining a TBI. Opportunities for such a 
collaboration is a key focus of the interagency committee. HRSA 
committed to ensuring that individuals with TBI and their 
families have accessible and appropriate services and supports.
    NIH, CDC, and SAMHSA are making strides in the respective 
areas of research prevention and surveillance and behavioral 
health. We are working together to ensure that our efforts are 
complementary and to achieve cross-departmental coordination 
and strategic leveraging of resources to address the full 
spectrum of needs of individuals and families impacted by TBI.
    Mr. Chairman, this completes my prepared remarks. Once 
again, thank you for the opportunity to testify today and 
provide an overview of our TBI program.
    [The prepared statement of Ms. Strickland follows:]
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    Mr. Pitts. The chair thanks the gentlelady and recognizes 
Mr. Ditto for 5 minutes for your opening statement.

                STATEMENT OF WILLIAM A.B. DITTO

    Mr. Ditto. Thank you very much, Chairman Pitts and Ranking 
Member Pallone from New Jersey. Just to clear things up, I am 
the retired director of the Division of Disability Services in 
the New Jersey Department of Human Services, since I have been 
given a variety of interesting previous titles when I was 
introduced. But I am really here today not so much in that 
role, but more in my role as the Chair of the Public Policy 
Committee for the National Association of State Head Injury 
Administrators, better known as NASHIA.
    We are the only nonprofit organization that represents 
State government agencies and services who are involved in the 
provision of short- and long-term rehabilitation and community 
services for individuals with TBI and their families. And I am 
pleased to give you an opportunity to understand where State 
government stands with regard to serving these individuals.
    The big item here that I want to emphasize is that no two 
individuals with TBI are the same, and neither are any two 
States the same with regard to the extent that they are able to 
address these needs. The one thing that is the common thread 
throughout this country is that brain injury is, in fact, the 
leading cause of disability not only in the State of New 
Jersey, but all across the country.
    And I think this has not been recognized and not been 
recognized well. And if you go out on the street and ask folks 
what is the most significant disability, you will get mental 
retardation, cerebral palsy, autism, all sorts of different 
things; but in truth, it is, in fact, head injury. And head 
injury is such a disability because it is cradle-to-grave. It 
affects people in all age categories. And as a result, 
individuals with this type of disability have to interface with 
a lot of different governmental programs over their time as a 
survivor of brain injury. And as someone on the panel has 
already--someone on the committee has already mentioned, 
individuals with brain injuries are, in fact, surviving and 
they are thriving to the extent that they can get services that 
they need.
    In the early 1980s, families began advocating for States to 
provide rehabilitation in other services, and there are so many 
different needs for people with brain injuries. There really 
are no two individuals with brain injuries who are just the 
same. We also have the mild, moderate, and severe 
classification of brain injury, which makes it in my experience 
a little less clearcut. In many other forms of disability, we 
can quite clearly state what the extent of the disability is 
through clinical observation and medical evaluation. This is 
not true with brain injury. Not only that, but there was for a 
long time a feeling that people with brain injury could only 
achieve a certain plateau, a certain level, and nothing would 
happen after that.
    Research has proven that individuals, even 10 years post 
brain injury, can make significant improvements when given the 
right services. About 20 States administer Medicaid home- and 
community-based services programs for individuals with 
disabilities that are intended to provide for service in lieu 
of a more extensive institutional or long-term care. What our 
big concern at this point is that the systems need to be 
coordinated, and they need to be available to people of all 
ages. We have found from the CDC, who has moved brain injury up 
to the top of its list of concerns--and it was not always at 
the top of this list--we have found from them that the leading 
cause right now is falls, falls in individuals over the age of 
75. And I think we are all familiar with the baby boomers and 
where we are headed with that. I myself am one of them. And 
then in addition to that, it is in children under 4.
    So look at that age spectrum we have; there are people 
suffering from brain injuries throughout the progression of 
life. It is not just the typical younger adult male crash 
victim or the returning servicemember, it is really a large 
number of people. And individuals with brain injuries and their 
families are specifically looking to States for help and 
support.
    We would propose in terms of the Federal HRSA-TBI grants 
program that the grants be shifted away from short-term 
projects to allow States to maintain and expand initiatives. We 
would ask that States are given additional flexibility to use 
funds for case management and other services, that States can 
target their grant requests on populations which they identify 
as underserved, and that the program move from a competitive 
grant program to a formula-funded approach, contingent upon the 
availability of Federal funds, to allow each State to receive a 
predictable amount of funding.
    Right now the program is competitive in nature. I believe 
21 States are receiving grants. The rest of the States are not 
receiving grants, and they are relying totally on their own 
resources to be able to do that. So just as States are required 
to coordinate and maximize State and Federal programs and 
resources, NASHIA supports the Federal Interagency Task Force 
that HRSA has created to promote Federal coordination of all 
resources.
    We look forward to that time when the task force will 
invite stakeholders such as NASHIA, the Brain Injury 
Association of America, the National Disability Rights Network, 
as well as individual TBIs and their families to provide input 
as we develop a national plan and priority for TBI. Thank you.
    Mr. Pitts. The chair thanks the gentleman.
    [The prepared statement of Mr. Ditto follows:]
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    Mr. Pitts. And recognizes Dr. Winston for 5 minutes for an 
opening statement.

                STATEMENT FLAURA KOPLIN WINSTON

    Ms. Winston. Good afternoon. Thank you Chairman Upton, 
Chairman Pitts, Vice Chair Burgess, Ranking Member Pallone, and 
distinguished members of the subcommittee for calling this 
hearing and inviting me to testify. I am encouraged to see the 
increased focus on child traumatic brain injury, or TBI, along 
with the emerging emphasis on prevention. My name is Dr. Flaura 
Koplin Winston. I serve as Scientific Director for the Center 
for Injury Research and Prevention at the Children's Hospital 
of Philadelphia, or CHOP, as well as Professor of Pediatrics at 
the University of Pennsylvania. In addition to being a doctorly 
trained bioengineer, I am a board-certified practicing 
pediatrician and a public health researcher.
    The Children's Hospital of Philadelphia is the Nation's 
largest pediatric healthcare network and is home to one of the 
largest pediatric research programs in the U.S. I am humbled by 
the commitment and skill that the hospital brings to pediatric 
injury, much of which is enabled by investments from the 
Federal Government.
    I came to care about TBI early in my training. When I would 
hear the trauma transport helicopter, I felt a sense of dread 
for the family whose life would be changed by their child's 
TBI. Every day more than 125 of our Nation's children are 
hospitalized or die from TBI. Car crashes, sports, falls, and 
child abuse are the likely causes, largely preventible events, 
at great cost to families and to society. Annually estimated, 
TBI costs are more than $29 billion for children who die and 
$53 billion for those who are hospitalized. Therefore as a 
Nation, I propose that our primary success metric should be 
annual reductions in pediatric traumatic brain injuries.
    To reduce the TBI burden, I propose three priority areas: 
one, prevention; two, timely state-of-the-art acute care; and 
three, optimal recovery. I hope to demonstrate the importance 
of research and its translation, professional training and 
coordinated efforts. Together we can address child TBI so that 
our children and grandchildren can reach their full potential. 
The good news is that we know how to avoid TBI. Protect the 
brain from blows and jolts. Prevention is the best medicine. If 
you get your grandson into a car seat, or your daughter's 
sports league to adopt safe play, you can reduce the chance of 
TBI. Unfortunately, many safety strategies were designed for 
adults, not for children.
    Let me demonstrate how we can do better. At CHOP we found 
that early air bags in cars designed to save adults could 
fatally injure a child. A research-supported effort by 
government and industry to improve air bag design, policies and 
education, and now child air bag deaths are rare. Dramatic 
success like these require strong science and collaboration. 
The National Science Foundation has provided us with 
opportunities to work with partners to protect our children's 
brains in a world designed for adults.
    Research funded by NIH, CDC, HRSA and DOT taught us another 
important lesson. When it comes to TBI, child age affects the 
brain's response to impact and recovery. For example, we now 
know that infants with severe TBI have the worst prognosis. We 
also know that when compared to adults, older children with 
milder TBI recover more slowly with more physical, emotional, 
and cognitive challenges. Federal-funded biomechanics and other 
foundational research is teaching us why. Sadly, given the 
limits of current prevention efforts, TBI will continue.
    Our next level of defense is timely and proficient acute 
care. Over the past decade the CDC, HRSA, and many others have 
raised awareness about early recognition and response to TBI. 
Children with severe TBI require highly specialized aggressive 
care in the hours after impact. Children with more mild TBI 
require cognitive and physical rest within the first 48 hours. 
Federal investments in basic and translational research are 
leading to improved strategies for those on the front line. And 
I suggest taking this to the next step by including industry in 
our partnerships.
    Unfortunately, the reality is that there are limits to 
current prevention and treatment. This is why recovery is our 
third line of defense. One of the 15 children who suffers a TBI 
today could have been your child or mine, and they now face the 
long road ahead to recovery. We need to be empowered with the 
best tools to restore vital cognitive function and help our 
loved ones recover fully. HRSA funding enabled innovative 
partnerships between schools and clinicians. These need to 
continue.
    I want to close by looking forward. Recently I was selected 
as a hero by a local elementary school's children because I 
work to save lives. They too want to save lives, but I worry 
that their dreams may be stunted. We need to shore up the 
necessary training and funding opportunities that young people 
will need to become tomorrow's investigators, inventors, 
innovators, and clinicians in pediatric injury.
    Mr. Chairman, Ranking Member Pallone, and members of the 
subcommittee, as policy members please know I am grateful for 
your role in helping to save children's lives. I thank you for 
inviting me to testify and look forward to answering your 
questions. As you consider this issue I want to leave you with 
one thought: The average medical cost for children hospitalized 
for TBI is $40,000. That is a lot of helmets.
    [The prepared statement of Ms. Winston follows:]
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    Mr. Pitts. The chair thanks the gentlelady and recognizes 
Dr. Ashley for 5 minutes for an opening statement.

                  STATEMENT OF MARK J. ASHLEY

    Mr. Ashley. Good afternoon, Chairman Pitts, Ranking Member 
Pallone, and members of the subcommittee. Thank you for the 
opportunity to testify today. My name is Dr. Mark Ashley. I am 
the President and CEO of the Centre for Neuro Skills which 
operates brain injury rehabilitation programs in California and 
Texas. I also serve as the Chairman Emeritus of the Brain 
Injury Association of America, which represents the 5.3 million 
children and adults in the U.S. who have long-term disability 
as a result of traumatic brain injury.
    In 1972 my brother Steve sustained a catastrophic brain 
injury while in the Navy. For 8 years he lay incontinent, 
unable to move, unable to speak, communicating through eye 
blinks only. When I completed my professional training in 1980 
I co-founded the Centre for Neuro Skills and admitted my 
brother. After 18 months of intensive rehabilitation, Steve 
regained continence, speech, movement in all extremities, and 
was able to actually feed himself.
    I hope to provide you today with several key points. The 
first is that traumatic brain injury affects people of all ages 
and is more prevalent than new diagnoses of all cancers in the 
U.S. There are over 4,000 people who will sustain a brain 
injury every day in the United States. The injury is 
heterogeneous and unpredictable. Treatment is very complex and 
highly specialized. Treatment, particularly rehabilitation in 
post-acute settings, is clinically effective and cost 
efficacious. There is significant variability in access to 
medically necessary health care for patients with traumatic 
brain injury. And research funding is not adequate to match the 
significance of this public health threat.
    TBI is not an event or an outcome, it is a catastrophic 
condition, and it is the start of lifelong disease, causative 
and disease accelerative processes. In the early weeks after an 
injury, the brain's metabolism stabilizes and improves. This 
allows the brain to find and use undamaged alternate pathways 
to perform tasks; a workaround, if you will. To maximize 
recovery, however, the brain must grow new neurons, new glial 
cells, new synapses, and new vascular structures. In short, 
grows new brain. The process is demand-induced and is rate-
limited. It occurs slowly. For children and adolescents, early 
recovery gives way to later deficits in behavior, new learning, 
and in skill acquisition. There is not a single pathway or 
course of treatment for catastrophic traumatic brain injury. 
Instead, care is provided across a spectrum of settings, 
including nonhospital-based rehabilitation facilities that 
evolved in response to demands for less costly treatment.
    When my brother was injured 40 years ago, his initial 
hospital stay was over 12 months and his rehabilitation, 
initiated 8 years later, lasted 18 months. More recently, ABC 
News journalist Bob Woodruff and Congresswoman Gabriel Giffords 
made miraculous recoveries after a year or more of intensive 
rehabilitation. Today, however, most patients with moderate to 
severe brain injuries average just 19 days in the hospital and 
just 26 days or less in post-acute rehabilitative treatment.
    What surprises most people is that today many patients do 
not receive complete rehabilitation. They include older 
patients, minorities, those who have no insurance or who are 
covered by Medicare and Medicaid, even many who have insurance. 
The consequences of this shortsighted approach include more 
medical complications, greater permanent disability, family 
dysfunction, job loss, homelessness, impoverishment, medical 
indigents, suicide, and involvement with the criminal or 
juvenile justice system.
    Inadequate treatment leads to lost productivity and greater 
use of medication, durable medical equipment, income 
maintenance programs, and long-term care and 
institutionalization. In contrast, the consequences of adequate 
medical treatment--that is, rehabilitation of sufficient scope, 
timing, and duration--are well documented but are not well 
known in the general medical community or among payors, 
patients, or families. Proper acute and post-acute treatment 
and disease management help to restore maximum levels of 
function, reduced long-term disability and suffering, rather 
than merely accommodating for it.
    My company provides post-acute treatments by physicians, 
licensed therapists, and other allied health professionals in 
assisted living facilities, like many other companies. 
Therefore, we are not eligible to be a Medicare provider. And 
because we do not have a Medicare provider number, we cannot 
accept TRICARE patients through a normal admissions process.
    Currently my company is participating in the VA's assisted 
living traumatic brain injury pilot project. However, we are 
voluntarily supplementing the care paid for by the VA with more 
frequent and intensive therapies, because after 32 years of 
clinical practice I know that is what our service members need 
and firmly believe it is what they deserve. TBI can change how 
you move, talk, think and feel, it can change the length of 
your life and its quality. Individuals with brain injury, and 
their loved ones, are rarely able to advocate for themselves. 
They rely on policymakers to invest wisely in prevention, 
treatment, including medically necessary rehabilitation, and in 
research.
    In 2011 the NIH spent $81 million on traumatic brain injury 
research, as compared to $5.4 billion in cancer. The disparity 
is enormous, given the similarity in annual incidents and 
higher societal costs associated with brain injury.
    The Brain Injury Association supports basic science 
research as envisioned by the One Mind Campaign. Investment in 
epidemiologic research by the CDC strongly advocates for more 
rehabilitation research for children and adults by the National 
Institute on Disability and Rehabilitation Research. We cannot 
sacrifice care while the field works toward a cure; therefore, 
BIA strong supports reauthorization of the TBI Act. We urge 
policymakers to move away from time-limited project-oriented 
grants, to formula funding so that all States and territories 
can build a sustainable infrastructure to address this growing 
public health problem.
    Finally, as you have learned today, administering treatment 
at the proper time and with the right scope, intensity, and 
duration by a well-skilled workforce yield significant cost 
savings in both the public and private sectors and vastly 
improves outcomes, functional independence, and life 
satisfaction.
    We hope you will take action leading to better health, 
enhanced employment and education, and more fairness in 
equality for this vulnerable population. Thank you.
    Mr. Pitts. The chair thanks the gentleman and thanks each 
of you for your opening statements.
    [The prepared statement of Mr. Ashley follows:]
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    Mr. Pitts. I will now begin the questioning, and I will 
recognize myself 5 minutes for that purpose.
    Dr. Strickland, the committee applauds your efforts to 
convene an interagency working group, to maximize resources and 
coordinate Federal efforts related to traumatic brain injury. 
Would you please review the goals of the working group, and 
what is the role of the stakeholders within the group and how 
do they receive public input?
    Ms. Strickland. Thank you. The purpose of the Federal 
Interagency Coordinating Council is, as I said in the testimony 
and in my statement, to facilitate greater collaboration and 
coordination across the agencies that are working on TBI 
activities. We want to maximize the activities and we want to 
minimize duplication of effort. We also want to create a common 
vision across the multiple programs that are going on not only 
in HHS, but across government, around traumatic brain injury. 
And above all, we want to be able to collaborate and leverage 
each other's resources.
    One of the ways that we are doing that is through a 
clearinghouse of Federal tools. We are hoping, and we are just 
throwing this out now, we are hoping that we will be able to 
include tools produced by all of the Federal programs in one 
place that would be accessible to the public and to each other 
so that we wouldn't duplicate effort and that we could use our 
scarce resources to launch out into new areas.
    Mr. Pitts. Thank you. Dr. Winston, we have always heard of 
the plasticity of young brains and their remarkable ability to 
adapt to the surgical removal of part of the brain. Yet in your 
testimony, you mention that young brains are actually harmed 
more than the brains of older individuals. Would you elaborate 
on this difference?
    Ms. Winston. Yes. Children differ from adults 
biomechanically, cognitively, emotionally, socially, and these 
differences affect injury and its recovery. Just think about 
normal children and the amazing changes that occur as your 
children grow up. Think about when you held your baby, think 
about when you taught your older child how to ride a bike or 
your teenage how to drive. Just as they are different on the 
outside, their brains are different on the inside. And new 
research is showing that this fundamental knowledge of the 
brain and its response to injury is yielding some surprises.
    We used to think that children were more resilient, their 
brains were more resilient to impact. But in fact, let me give 
you three examples. Adult skulls fracture on impact, infant 
skulls bend, and when they bend it presses on the brain and can 
cause damage. Another is that infants have stiffer brains. 
People used to think that that was protective. But in fact, 
they injure at much lower levels of impact and energy. And then 
finally, some new research that was done by--the first research 
was done by Dr. Susan Margulies at the University of 
Pennsylvania.
    New research that was done by Dr. Fred Rivera at Harborview 
shows that for mild traumatic brain injury, we start to see 
that there are disabilities that emerge that might not have 
been thought to be the case. And here there is a slight 
difference. It is the teenagers who have more disability from 
the same level of mild traumatic brain injury. And I think that 
this really shows that we are just beginning to truly 
understand the biomechanics of brains, the biology of what 
happens in the event of an injury, and this knowledge and this 
furthering of our understanding of our scientific foundation is 
going to help us to come up with better helmets, better 
prevention strategies and better therapies and, I hope, better 
recovery.
    Mr. Pitts. You mentioned the short-term and the long-term 
effects of brain injury in children. Can you have long-term 
effects without noticing any short-term injury?
    Ms. Winston. I think that you usually will see something 
early on. But there are some subtle differences. Children are 
continuing to develop as we go forward. I often talk about 
children as an unfinished painting, right. We don't know where 
they are going to go, we don't know what their potential is 
going to be. And so as they get older there might be need for 
certain--certain cognitive abilities that weren't needed early 
on, and they will come through.
    Again, there was a study that was recently done that showed 
that at 36 months after a traumatic brain injury, children with 
moderate to severe brain injury had much poorer function than 
they did at baseline and that they had no improvement between 
24 and 36 months. And so this really gives us pause that we 
don't know enough about how to optimize therapy and optimize 
recovery, but we really need this in order to better inform our 
future interventions.
    Mr. Pitts. The chair thanks the gentlelady, and recognizes 
the ranking member, Mr. Pallone, 5 minutes for questions.
    Mr. Pallone. Thank you, Mr. Chairman. I wanted to start 
with Mr. Ditto. It is my understanding that the treatment of 
traumatic brain injury is very complex and, unlike other 
diseases, the treatment of course has to be tailored for each 
individual and the outcomes can be variable as well. And I 
realize there is a great importance in an interdisciplinary 
approach towards treatment and management of patients. 
Particularly those with severe diseases may require a broad 
range of services, including health care, education, vocational 
rehab, and housing. And State health departments like yours or 
like the New Jersey Department of Health, play a critical role 
in serving as access points.
    Can you tell us more about the importance of an 
interdisciplinary approach in case management in the treatment? 
In addition, can you highlight ways that you have been 
successful in providing these services in New Jersey?
    Mr. Ditto. Of course. Again, I am from the Department--I 
was previously with the Department of Human Services. We have 
got to get that health out of there. Not that I don't like 
health. But I do want to say that it is very true that one of 
the most critical services for individuals with brain injury, 
regardless of the age at which the brain injury occurred, is 
the ability to get service coordination and multidisciplinary 
intervention into the picture, because it requires a lot of 
different folks with a lot of different specialties to be able 
to help people, because no two people, as I said before, are 
alike.
    And so when we look at this, the important element is to 
have one central coordinating individual--and that is usually a 
case manager--that the family and the individual can work with 
to structure the kind of individualized service package and 
then follow along. Case management isn't successful if you just 
say to somebody, oh, well, there is a treatment place over here 
that you could go to, they are open on Monday and Wednesday. 
You need to not only tell them about it, maybe you need to go 
there with them the first time to get them introduced. Maybe 
you need to follow up. Maybe you need to check with the program 
to see if their attendance has dropped off. You need to have 
someone who is measuring progress.
    Case managers look at where they start with their clients 
and they move forward. And case management can come from a 
variety of sources. The Title 5 Maternal and Child and Health 
Program provides States with funds to provide case management 
to children with diseases and disabilities. And I can tell you 
in the State of New Jersey, it is a highly effective program 
that works very well in terms of providing that level of 
intervention helping families negotiate.
    It is harder in the adult system for us to offer those 
kinds of services because there are not entitlement programs 
that we can turn to. So for the individual with an adult onset 
brain injury, States have developed things like State trust 
funds. And we did that in New Jersey, a surcharge on motor 
vehicle registrations. Those of you in New Jersey know that we 
register and reregister our cars every year and pay a fee for 
it. And we got them to take a dollar of that fee and put it 
aside into a trust fund, and we use that trust fund money to 
help support education, outreach, awareness, and direct 
services.
    The most requested service in the State of New Jersey by 
people of all ages, from children through 99-year-old people, 
was case management, was someone to help them negotiate and 
navigate the system, and somebody with sufficient training to 
be able to understand the subtle differences between people 
with brain injury.
    If you see someone who has had a severe brain injury and 
they are in a wheelchair, you obviously see, oh, they have 
physical impacts from it. But so often for people with brain 
injury, they don't look any different than you and I do, but 
they have the problems of cognitive dysfunction, they have the 
problems of impulsivity, aggressiveness, they have impaired 
processes that lead to social problems. And one of the things 
States are very concerned about is a lot of individuals who 
have brain injuries end up in our justice system, end up in our 
prisons. And I hate to tell you, but it is true, they end up in 
State psychiatric hospitals. And frankly, a State psychiatric 
hospital is not a place for an individual with brain injuries 
to be.
    I spent a good deal of the last 10 years of my professional 
career trying to get people out of inappropriate placements and 
back into the community. But the funding for this is very, very 
difficult. There is more funding available on the child side 
than there is on the adult side. We are trying to tap into the 
aging piece of this and get more help from the Administration 
on Aging. But it comes back to the issue of really seeing that 
this is a lifelong disability that impacts people of all ages, 
and we have to look carefully at what systems have already been 
put in place out there that we can knit together to provide a 
comprehensive service. And even if we can't afford to buy all 
the treatment we need for people, at least if we can give them 
case management services and get them somebody who can help to 
coordinate their medical care with their rehabilitation care, 
with their education program, with community supports and 
services, can make a tremendous difference.
    And again, as I say, when I look back on our TBI fund in 
New Jersey, which was very successful, the most frequently 
requested service was case management beyond all others. And we 
offered a very broad range of home modifications and treatment 
services and all sorts of things, and people opted--the thing 
that was most opted for was case management.
    But it is not equal across the country. When you go from 
State to State, and that is the luxury of working in a national 
organization like I do, when you go from State to State, there 
is such a big variation in what is available to people. And 
really this is a lifelong disability from which people, in my 
view--and I know not everyone likes this term--but they 
survive. I am not sure they recover. They survive. They learn 
compensatory strategies, they learn how to cope with the world, 
they learn how to make their way and improve their social 
interaction and minimize, hopefully, their involvement with the 
legal system. But it is a lifelong disability. You don't just 
wake up one day and say, oh, I don't have a brain injury any 
longer, everything is back to normal and I am perfectly fine. 
It is there forever. Thank you.
    Mr. Pitts. The chair thanks the gentleman, and recognizes 
the vice chairman of the committee, Dr. Burgess, 5 minutes for 
questions.
    Mr. Burgess. Thank you, Mr. Chairman. Dr. Winston, along 
that line, do you have a sense as to--I mean, clearly States 
are doing things differently among the several States. Do you 
have a sense as to whether or not there is any coordination at 
the State level as to adopting the best practices, what is 
working in one location might be transferrable to another 
location, is there communication along these lines, are States 
looking at what programs are working in other areas?
    And then I want to go to Dr. Strickland as to what the 
Federal oversight of that is. But do you get a sense there are 
States that are doing it right and States that show room for 
improvement?
    Ms. Winston. Well, I have to say that it is not my 
expertise to look at what States are doing, so I can't really 
give you a full answer. I can speak to one program that HRSA 
funded that is in Pennsylvania that might be of help to you. In 
Pennsylvania, there is this group--there is a program that is 
called Brain STEPS to try to reintegrate children into the 
school system; because, understand, that is the job of children 
is to go to school and to get back in there. And now every 
school district in Pennsylvania has been trained in traumatic 
brain injury and there is coordination between these school 
districts and the local health care teams.
    So I think that there are some models. I was hearing them 
from the panel members here. We need to build the 
collaboration. And, again, I want to reiterate, it is not just 
within the public sector, it is also with the private sector. 
It is really important to keep them together. So I would like 
to actually give my time over to Dr. Strickland.
    Mr. Burgess. Let me just ask you one follow-up on that 
before we leave it. Then, what type of coordination do you see 
between the schools and the Department of Education in this 
regard, because obviously the schools may become the de facto 
rehabilitation center for children with brain injury. How do 
they integrate with the State Departments of Education or the 
Federal Department of Education?
    Ms. Winston. I can tell you that one of the main things I 
do for children, as a practicing pediatrician for children with 
special healthcare needs, is to try to get them into an 
individualized educational plan to get them the medical care 
that they need at the schools. And this does require a 
tremendous amount of coordination.
    Mr. Burgess. And how receptive is the Department of 
Education, the State Department of Education to those?
    Ms. Winston. Well, they are limited by their budgets as 
well. Clearly we have challenges to fund our public education 
system. But I can tell you that that is a part where the State 
and the school districts are really trying to make this better 
for children. But it is a very challenging thing to provide the 
kind of care that these children need day in and day out at 
school. They also need wraparound services with someone who is 
there with them in school to deal with their emotional 
outbursts, to deal with other things. So it is a really 
challenging situation.
    Mr. Burgess. I am sure it is. Dr. Strickland, let me just 
ask you a question. The total budget for HRSA in the 
President's fiscal year budget for this year?
    Ms. Strickland. 9.76.
    Mr. Burgess. 9.76?
    Ms. Strickland. Million.
    Mr. Burgess. For the total of HRSA?
    Ms. Strickland. I would have to get back with you on that. 
You mean of all related activities?
    Mr. Burgess. Yes.
    Ms. Strickland. Everything related? I would have to check 
with our colleagues and see. But through the Traumatic Brain 
Injury Act, our program receives----
    Mr. Burgess. Within your division of the agency, the budget 
is?
    Ms. Strickland. $9.76 million.
    Mr. Burgess. No, no. The total HRSA budget. It is going to 
be in excess of $8 million, is it not?
    Ms. Strickland. Oh, for everything?
    Mr. Burgess. Yes.
    Ms. Strickland. In HRSA? Oh, yes, $700 million.
    Mr. Burgess. Did the President's request increase last year 
to this year?
    Ms. Strickland. Yes.
    Mr. Burgess. About how much, again, for the total of HRSA?
    Ms. Strickland. I don't remember.
    Mr. Burgess. The figure I have been given is $228 million. 
Does that sound about right?
    Ms. Strickland. I would have to get back with you.
    Mr. Burgess. And then we are spending on traumatic brain 
injury how much?
    Ms. Strickland. $9.76 million.
    Mr. Burgess. I mean, that just seems thin given the total 
HRSA budget, does it not?
    Ms. Strickland. We do a lot with the resources that we 
have. We can always do more with more.
    Mr. Burgess. It seems thin, given the requested increase. 
Now, I grant you Congress is supposed to do the budget, and 
Congress does the appropriation, so there is always a 
disconnect between what the President's request is and what the 
actual dollars are. But it just almost seems out of line, it 
seems out of kilter there. Is it because you are not asking for 
enough? I mean, Frank, he loves to give you money, so ask him. 
He will do it, he will write the check himself; I have seen him 
do it on this committee when he was chairman, subcommittee 
chairman.
    Well, I guess my point is it seems like there is a 
disconnect between the level of funding for traumatic brain 
injury and HRSA and all of the other many things that HRSA 
does, however great and wonderful they are. And I am just 
asking as we go through this, that is something we might spend 
a little time and a little attention to see if there are places 
where perhaps other funds could be freed up in other areas and 
delivered to this very pressing need.
    Thank you, Mr. Chairman, for the indulgence. I yield back.
    Mr. Pitts. The chair thanks the gentleman. The other 
members seem to have stepped out, so we will begin round two of 
questioning.
    Dr. Strickland, the GAO just found that NIH, DOD, and VA 
each lack comprehensive information on health research funded 
by the other agencies. GAO raised concerns about the potential 
for unnecessary duplication and urged the agencies to find ways 
to coordinate their efforts.
    Question: How is TBI research that is conducted by NIH, 
DOD, and VA coordinated among the three agencies?
    Ms. Strickland. Well, I would reiterate that both DOD and 
VA are members of the newly established Interagency 
Coordinating Council. We will have our second meeting actually 
at the end of this week. But specifically, NIH has partnered 
with the DOD in building a central Federal interagency brain 
injury research database that will allow access to researchers 
across the multitude of research done by both agencies. This is 
important, because that helps us establish better TBI 
classification systems, better diagnostic criteria for mild 
TBI, predictive markers for dementia, and a host of other 
activities that can only really be achieved through that type 
of collaboration. So I think that the acronym is FITBIR. The 
Federal Interagency Traumatic Brain Injury Research database I 
think is going to be a real facilitator.
    Mr. Pitts. So you are working to improve access to 
databases----
    Ms. Strickland. Right.
    Mr. Pitts (continuing). And electronic information on the 
funded research?
    Mr. Ditto, how are the States working with returning 
servicemembers or veterans, and how do States coordinate these 
services with the veterans organizations.
    Mr. Ditto. Well, actually the States have had an 
interesting opportunity over the last several years. The 
Veterans Administration actually established a program in 
conjunction with the Department of Health and Human Services 
that is called Consumer Directed Home and Community-Based 
Veterans Services.
    Mr. Ditto. And it was modeled after a program that was done 
in a number of States in which individuals were given an 
individual budget and then allowed to decide how to use that 
money to meet their specific needs. And so the States have 
gotten involved--it is a slow process, but it is taking off--in 
getting involved in understanding that the returning service 
people, once they have had the acute care and they go through 
the acute rehabilitation phase through Veterans Affairs, they 
then need sort of a stepdown after that. They are not ready to 
just go back into their communities and live. They need an 
environment, a therapeutic environment, not as intense as 
intense physical rehab is, but something that is more a day-to-
day living, kind of getting adjusted program.
    And so I think we are making headway with that, because 
before, to be perfectly blunt, in most States the Department of 
Defense was placing individuals in long-term care facilities 
and nursing homes. And so we are getting away from that.
    I think also the States are reaching out to their Veterans 
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 at these other programs that were out 
there dealing with people who had acquired their brain injuries 
in a different way other than combat.
    Mr. Pitts. Thank you. Dr. Ashley, you described the 
variability of post-acute care for TBI patients. What are the 
factors that cause this variability? And also would you--I only 
have so much time--describe the difference in rehab and 
rehabilitation of children's versus adults?
    Mr. Ashley. Yes, sir. The first part of your question is 
what accounts for the variability. It begins with the lack of 
understanding of the condition itself. As I mentioned earlier, 
in the general medical community and in the payer community, 
there is not a good understanding of the neurophysiologic and 
neuroanatomic principles of neuroplasticity as a recovery 
mechanism for brain injury. It used to be thought that what you 
see at 6 months is what you get. Today we understand that 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 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 is treated as 
though it is a broken bone. A broken bone takes 6 weeks to 
heal, and we get 2 weeks or so in rehabilitation for the brain. 
Wholly inappropriate.
    We also have rehabilitation policy insurance plans that 
were designed for musculoskeletal and orthopedic rehabilitation 
4 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. The injustice here is 
that we actually have the ability to do it. So we are simply 
withholding this care and calling it something other than 
medical treatment and constraining it in policy by either 
licensure restriction or by benefit restriction. One or both.
    I apologize, the second part of your question? Oh, the 
difference between children and adults.
    Mr. Pitts. Yes.
    Mr. Ashley. Euphemistically it is said that children are 
not little adults. I think Dr. Winston touched on it very 
nicely when she indicated the pathophysiology of a child's 
brain 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 neurophysiologically. Once altered, it is 
difficult to know if these changes actually revert to normal or 
not.
    There is great suspicion, for example in pediatric injury, 
that neuroendocrine abnormalities contribute to a failure of 
the system to further mature appropriately. As a consequence we 
have to really call into question the role of even occult brain 
injury, much less more obvious brain injury, in conditions that 
might lead to dyslexia, agraphia, dyscalculia, 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 children, we have 
medication differences, 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 is 
difficult to amass them in a single environment and take them 
out of their cultural surroundings--family, school, et cetera. 
So unfortunately, because of vagaries of rehabilitation 
coverage, the schools do end up being the de facto 
rehabilitation setting. It is not what they are trained for, it 
is not what they are 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. Pitts. The chair thanks the gentleman and recognizes 
the ranking member for 5 minutes for questions.
    Mr. Pallone. Thank you, Mr. Chairman. I want to ask Dr. 
Winston, you described how the majority of research is focused 
on traumatic brain injury in adults and that the scientific 
foundation for pediatric brain injury is limited. And you 
mentioned the need for focused research investments to inform 
new safety products, programs, and policies that will better 
prevent and reduce the severity among children.
    It seems that you believe there is an important role for 
NIH and other Federal agencies and Congress to build upon 
existing 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?
    Ms. Winston. Thank you very much for asking that question. 
We need to build up our scientific foundation so that we can 
improve and be more efficient in how we deliver our care. I 
like to think about it in five categories: first, to improve 
the prevention strategies, we need to understand the who, what, 
where, when, how, and why of pediatric injury, using 
biomechanics, behavioral science, epidemiology and the like. We 
need to improve our methods and measures for studying, 
diagnosing, and following the course of TBI. Biomarkers are 
also important. We need to conduct--work to know what works and 
what doesn't, 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 
frontline. And we need to support innovation research for the 
development of new safety products, biomarkers and 
therapeutics. And we must not forget to train our next 
generation to be scientists of pediatric injury.
    There are two resources I call the committee's attention to 
that would be able to give you more complete answers. I am 
trying to be brief here. The first is a very exciting 
initiative that I was part of--actually both I was part of--
that would be released by the CDC, I think next month, and it 
is a national action plan for child injury prevention that 
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 Childhood Health and Development is interested in childhood 
injury, and I applaud leadership for their interest in this. 
The Society for 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 that you get ahold of 
that as well.
    From the personal perspective, there is a range, a wide 
range, whatever we need to do. I think we can prioritize and we 
should.
    Mr. Pallone. Thank you very much. Dr. Ashley, in your 
testimony I am struck by the continuous care that is needed for 
people with traumatic brain injury. And you stated that those 
Americans who have experienced moderate to severe traumatic 
brain injury, their recovery often extends beyond their 
hospitalization and requires ongoing extensive rehab.
    You also testified that it is the start of a disease-
causative and disease-accelerative process. Can you elaborate 
on the extent to which more serious brain injuries are lifelong 
conditions? I know you mentioned that, but if you want to talk 
about it a little more.
    Mr. Ashley. 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 are not sure 
exists. In fact, a few hours after an injury to the brain, we 
see inflammatory processes around the body initiated. In about 
a third of all individuals late in life, we will see those same 
processes reinitiate. So we change how the brain's biochemistry 
works. The brain functions in various degrees of bioenergetic 
crisis following a brain injury, almost indefinitely.
    As a result, what happens is the metabolic demand creates 
tremendous stress within the system that triggers a number of 
degenerative processes. So we are beginning to reconsider 
lifelong diseases or diseases we have known lifelong as 
Parkinson's, amyotrophic lateral sclerosis, multiple sclerosis, 
Neimann Picks, Huntington's chorea, and so on, as lipid 
metabolic disorders that may have an origin in alteration in 
the brain's neurophysiology after a brain injury. You see this 
made manifest in the recent press 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 in a condition called chronic traumatic 
encephalopathy that has been identified as a single example of 
these lifelong conditions and progressive conditions.
    Mr. Pallone. Thank you. Thank you, Mr. Chairman.
    Mr. Pitts. The chair thanks the gentleman and recognizes 
the gentleman from Illinois, Mr. Shimkus, 5 minutes for 
questions.
    Mr. Shimkus. Thank you, Mr. Chairman. I appreciate the 
panel being here. 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.
    Just at the outset, Dr. Strickland, we think it is 
applaudable for us to try to organize these agencies and try to 
maximize the focus. We know that you have got the Federal 
Interagency Committee, the Federal Clearinghouse for TBI, the 
Federal Interagency for TBI Research database, the Center for 
Neurosciences and Regenerative Medicine. How are you going to 
try to coordinate these groups? I think everyone knows and the 
President has also said we have got to get efficient and we 
have got to pare down redundancies. How are you going to go 
about doing that?
    Ms. Strickland. Well, I should clarify that the interagency 
committee that HRSA is convening is really not to achieve that 
intraagency----
    Mr. Shimkus. Do you think that is an important thing to do?
    Ms. Strickland. I think it is very important thing to do 
within each agency. Ours is more of an informal group so that 
we can be aware of what our agencies are doing and better align 
what we are 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 on 
dedicated activities of similar interest and similar focus.
    Mr. Shimkus. And I think we are going to try policy-wise 
and budgetary-wise to really streamline this process, not just 
in this area, but healthcare research dollars because we do 
seem to have sometimes multiple agencies doing similar things, 
but they are not coordinated and they are not feeding back the 
same information and there is not one clearinghouse. So we are 
not sure we--we are getting a return on that investment. The 
question is: Are we getting as big a return on investment as we 
should? That is not even in the Agency, that is some of the 
healthcare research in the Department of Defense, as you know, 
and the like.
    Let me go to Mr. Ditto. How many States are working with 
returning servicemembers or veterans?
    Mr. Ditto. Give me a quick number? Probably about 15 or 20, 
from what we are aware of. Now, some States are very advanced 
in this. The State of Massachusetts, for instance, has a very 
involved, elaborate program that they have 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 I am worried about from the standpoint of our 
organization and representing State government is that we just 
don't have every State working on this, but every State has 
returning service people. So right away we are in sort of a 
difficult position, because we are really not necessarily 
reaching people.
    The other thing is, and I am sure it is no surprise to you, 
most of the public entitlement programs across the country, 
especially like Medicaid, become the payer for long-term 
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, for obvious reasons.
    And it worries me because what is happening is in some 
respects people with brain injuries are just being mixed in or 
lumped in in States with other groups of people with 
disabilities, and yet as you have heard from the experts, the 
treatment and management of these individuals is quite 
different. We are looking at quite a different approach to 
doing something. And because it is a lifelong disability and 
because the impairments persist over time, over a long period 
of time, it really requires a lot of resources. And States are 
not--I don't think States don't want to do the right thing, I 
just think they are having a very difficult time with the 
funding. And with constrictions in programs and with the small 
amount of money that HRSA gets to support, through the TBI Act, 
what needs to be done, this system is not--the amount of money 
that is being given to HRSA is not reflective of the magnitude 
of the problem of brain injury. That is the simplest way I can 
say it.
    Mr. Shimkus. And we appreciate that. What about in your 
coordination with States? And how are the veterans 
organizations linked in at all?
    Mr. Ditto. Veterans organizations are linked in. In fact, 
we have have some very interesting developments in a number of 
States where the National Guard came to the State and said, We 
would like to do something with the people we are sending out 
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, they were 
sent home and retested. Because of baseline, there was an 
ability to determine whether or not any brain damage had been 
sustained. And if so, then plan an appropriate treatment. So 
both the local service organizations as well as the State 
veterans service organizations, as well as the Federal veterans 
department, Veterans Affairs, I think are all very interested 
in this. NASHIA 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 HRSA, it made it difficult 
for the rest of the States to get replacement funding from the 
legislature and the Governor to fill the void of trying to 
continue the momentum of this.
    Mr. Shimkus. My time has expired. I appreciate the answers. 
I will just finish on this, especially your last point, because 
as Members of Congress, one of things that we do numerous times 
is we do constituent service and we do a lot of Veterans 
Affairs issues, and have a baseline on disability and 
percentages, and be able to get through that system sooner 
rather than later, instead of reinventing the wheel--and some 
of the lag time, it is just really abysmal--that would be 
helpful too. So appreciate the testimony. Thank you, Mr. 
Chairman.
    Mr. Pitts. The chair thanks the gentleman. Dr. Winston, I 
didn't get to you, so I have just one follow-up, if you would. 
In your testimony you discuss 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?
    Ms. Winston. Yes. So the question is about the golden 
window, it used to be called the golden hour. We are now 
learning that it is important to have aggressive care for a 
longer period of time, as we heard terrific testimony on. You 
know, the fact is it is very difficult to do acute care 
research. And I think there is work out there to try to start 
bridging together emergency departments in hospitals to try to 
build networks where this kind of research can be done.
    Just beginning--I personally could get back to you on 
specific information--but I know of a very exciting study with 
adults that just came out from the University 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 
little, even late. 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 from low oxygen or a 
low blood flow.
    I think for mild traumatic brain injury, the window is a 
little bit longer, it is 48 hours. And I applaud the CDC and 
others to try to get that awareness out there that early 
recognition response is needed.
    But I want to challenge, if I may give you a challenge that 
we are experiencing, the growing awareness for early 
recognition has really turned into some real challenges by 
parents who want some sound answers. They want to know things 
like after how many concussions should my child be removed from 
contact sports? 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 concussions, 
because of awareness, have skyrocketed at the Children's 
Hospital of Philadelphia's Care Network, increasing 458 percent 
since 2009. We are struggling to meet the demand. We need 
research and leadership to provide evidence-based 
recommendations. It can't be this broad-brush because we just 
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 is necessary for this specialized care that children need. 
Thank you very much for that. We need better standards for 
safety equipment, biomarkers 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 just to reiterate, for the young athlete in particular, 
their job is not playing on the field, it is 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.
    Mr. Pitts. Thank you. And that effort for the Children's 
Hospital GME training was bipartisan. My colleague, Mr. 
Pallone, was a great advocate of that as well. Do you have any 
follow-up?
    Mr. Pallone. No. Mr. Chairman, first of all, thank you for 
what you just said and your comment about concussions in 
sports. I agree. I wanted to ask unanimous consent to submit 
the statement of our full committee ranking member, Mr. Waxman.
    Mr. Pitts. Without objection, so ordered.
    [The prepared statement of Mr. Waxman follows:]
    [GRAPHIC] [TIFF OMITTED] 81424.037
    
    Mr. Pitts. 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 10 
businesses 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.
    Without objection, the subcommittee is adjourned.
    [Whereupon, at 4:22 p.m., the subcommittee was adjourned.]

                                 
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