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

     LEGISLATIVE HEARING ON MISCELLANEOUS PUBLIC HEALTH LEGISLATION, H.R.
    1852, CHILDREN'S HOSPITAL GME SUPPORT REAUTHORIZATION ACT OF 2011, AND
            H.R. 2005, COMBATING AUTISM REAUTHORIZATION ACT OF 2011

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

                                    HEARING

                                   BEFORE THE

                             SUBCOMMITTEE ON HEALTH

                                     OF THE

                        COMMITTEE ON ENERGY AND COMMERCE
                            HOUSE OF REPRESENTATIVES

                          ONE HUNDRED TWELFTH CONGRESS

                                 FIRST SESSION

                                   __________

                                 JULY 11, 2011

                                   __________

                               Serial No. 112-72

    [GRAPHIC NOT AVAILABLE IN TIFF FORMAT]

          Printed for the use of the Committee on Energy and Commerce

                            energycommerce.house.gov
                                  __________

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                        COMMITTEE ON 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

                                     7_____

                             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. Fred Upton, a Representative in Congress from the State of
      Michigan, opening statement....................................     5
    Prepared statement...............................................     6
    Hon. Frank Pallone, Jr., a Representative in Congress from the
      State of New Jersey, opening statement.........................     7
    Hon. Michael C. Burgess, a Representative in Congress from the
      State of Texas, opening statement..............................    17
    Hon. Leonard Lance, a Representative in Congress from the State
      of New Jersey, prepared statement..............................    59
    Hon. Henry A. Waxman, a Representative in Congress from the State
      of California, prepared statement..............................    61
    Hon. James D. Dingell, a Representative in Congress from the
      State of Michigan, prepared statement..........................    63

                                   Witnesses

    Janet Heinrich, Associate Administrator, Bureau of Health
      Professions, Health Resources and Services Administration,
      Department of Health and Human Services........................    18
        Prepared statement...........................................    20
    Thomas Insel, Director, National Institute of Mental Health,
      National Institutes of Health..................................    25
        Prepared statement...........................................    28
        Answers to submitted questions...............................    65

                               Submitted Material

    Letters, dated May 19, 2011, from Jim Mandell, Board Chair, and
      Lawrence A. McAndrews, President and CEO, National Association
      of Children's Hospitals to Mr. Pitts and Mr. Pallone (submitted
      by Mr. Pallone)................................................     9
    Letter, dated May 26, 2011, from Benard Dreyer, President,
      Academic Pediatric Association, et al. to subcommittee
      leadership (submitted by Mr. Pallone)..........................    11
    Letter, dated May 24, 2011, from Atul Grover, Chief Advocacy
      Officer, Association of American Medical Colleges, to
      subcommitte leadership et al. (submitted by Mr. Pallone).......    13
    Letters, dated July 8, 2011, from Rick Pollack, Executive Vice
      President, American Hospital Association, to Mr. Pitts and Mr.
      Pallone (submitted by Mr. Pallone).............................    14
    Letter, dated July 11, 2011, from James L. Madara, Executive Vice
      President and CEO, American Medical Association, to
      subcommittee leadership (submitted by Mr. Pallone).............    16

     LEGISLATIVE HEARING ON MISCELLANEOUS PUBLIC HEALTH LEGISLATION, H.R.
    1852, CHILDREN'S HOSPITAL GME SUPPORT REAUTHORIZATION ACT OF 2011, AND
            H.R. 2005, COMBATING AUTISM REAUTHORIZATION ACT OF 2011

                                  ----------

                             MONDAY, JULY 11, 2011

                      House of Representatives,
                                Subcommittee on Health,
                              Committee on Energy and Commerce,
                                                        Washington, DC.
        The subcommittee met, pursuant to call, at 2 p.m., in room
    2123, Rayburn House Office Building, Hon. Joseph R. Pitts
    (chairman of the subcommittee) presiding.
        Members present: Representatives Pitts, Burgess, Blackburn,
    Gingrey, Latta, Cassidy, Guthrie, Upton (ex officio), Pallone,
    Dingell, and Waxman (ex officio).
        Also present: Representative Christensen.
        Staff present: Jim Barnette, General Counsel; Brenda
    Destro, Professional Staff Member, Health; Andy Duberstein,
    Special Assistant to Chairman Upton; Debbee Keller, Press
    Secretary; Ryan Long, Chief Counsel, Health; Katie Novaria,
    Legislative Clerk; Heidi Stirrup, Health Policy Coordinator;
    Stephen Cha, Minority Senior Professional Staff Member; Alli
    Corr, Minority Policy Analyst; and Ruth Katz, Minority Chief
    Public Health Counsel.
        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

        Today's legislative hearing will focus on two bills: H.R.
    1852, the Children's Hospital Graduate Medical Education
    Reauthorization Act of 2011, the bill that I introduced with
    Ranking Member Pallone; and H.R. 2005, the Combating Autism
    Reauthorization Act of 2011, introduced by Congressman Chris
    Smith. I will focus my remarks on the CHGME reauthorization.
        In his fiscal year 2012 budget President Obama proposed
    eliminating the Children's Hospital Graduate Medical Education
    program, a program that provides more than $300 million a year
    to 56 freestanding children's hospitals across the U.S. Three
    of these hospitals are located in my home State of
    Pennsylvania: the Children's Hospital of Philadelphia, the
    Children's Hospital of Pittsburgh, and Saint Christopher's
    Hospital for Children. Due to its proximity many of my
    constituents travel to the Children's Hospital in Philadelphia
    to seek treatment for their children.
        The CHGME program trains 40 percent of our Nation's
    pediatricians and 43 percent of pediatric subspecialists. More
    than 5,000 residents take part in this program every year. The
    1990s saw a 13 percent decline in the number of pediatric
    residents. However, since 1999 when the CHGME program was
    enacted, the number of pediatric residents has increased 35
    percent. During the program's lifetime, $2 billion has gone to
    train the next generation of pediatricians and pediatric
    subspecialists.
        The program's current authorization expires September 30,
    2011, and that is why I and Ranking Member Pallone introduced
    H.R. 1852, to reauthorize the program at the current level of
    $330 million over the next 5 years. This is a fiscally
    responsible bill which continues the CHGME program at its
    current authorization. We cannot simply zero out this important
    program, as the administration has requested, and hope that
    other Federal programs not specifically dedicated to pediatric
    health care will pick up the slack.
        To date this bill has garnered over 90 cosponsors,
    including more than half of the members of this subcommittee.
    This is not a partisan issue; it is about children's health and
    lives. I urge my colleagues to support this bill.
        I also support Representative Chris Smith's Combating
    Autism Reauthorization Act, H.R. 2005.
        I will now yield to the chairman of the committee, Mr.
    Upton, for the remainder of my time.
        [The prepared statement of Mr. Pitts follows:]
        [GRAPHICS NOT AVAILABLE IN TIFF FORMAT]

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

        Mr. Upton. Well, thank you. And certainly this legislative
    hearing gives this subcommittee an opportunity not only to
    review the progress of these two important bills, but also to
    demonstrate our ability to work in a bipartisan manner. And
    with the passage of CHGME in 1999, freestanding children's
    hospitals began receiving funds to support the pediatric
    medical residency programs. And as a result, the number of
    pediatricians in the U.S. has steadily grown.
        Over 40 percent of pediatricians and pediatric specialists
    are trained in the 56 freestanding children's hospitals that
    receive funding. The program has enjoyed bipartisan support. It
    makes the Obama administration's decision to eliminate funding
    for this in their 2012 budget very troubling. Even Secretary
    Sebelius expressed regret about the decision to zero out
    funding while testifying before the Energy and Commerce
    Committee earlier.
        We look forward to the testimony today and its impact on
    funding for pediatric medical residency programs in the future
    of the program.
        I would also say that the Combating Autism Act of 2006
    consolidated and intensified the Federal effort to understand
    and treat autism spectrum disorders. It also addressed the need
    to monitor the disorder and bring relief to the children and
    families who live with the challenge of autism. This year the
    Interagency Autism Coordinating Committee released its
    strategic plan for autism spectrum disorders research that
    provides a blueprint for researchers and a basis for
    partnerships for the public and private sector.
        Recent results from research on early screening genetics
    and prenatal conditions are hopeful signs that the Federal
    effort is working. The interagency coordinating committee is
    something that I am particularly interested in. I want to hear
    from the witnesses on how this committee has worked and whether
    the improved coordination of the Department's activities is
    something that should be emulated elsewhere.
        Too often I have visits from patient groups telling a story
    about how a particular agency's activities did not complement
    another's work. HHS is a unified Department and its differing
    agencies should have the same strategic vision that is
    coordinated to achieve maximum results.
        I look forward to the testimony and look forward to working
    with Republicans and Democrats on this very, very important
    issue, and I yield back.
        [The prepared statement of Mr. Upton follows:]
        [GRAPHIC NOT AVAILABLE IN TIFF FORMAT]

        Mr. Pitts. The chair thanks the gentleman, and now
    recognizes the ranking member of the subcommittee, Mr. Pallone,
    for a 5-minute opening statement.

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

        Mr. Pallone. Thank you Chairman Pitts. I want to thank you
    for holding this hearing on two very important public health
    bills, and I welcome the bipartisan spirit that brings us
    together today.
        Specifically, I am proud of the bill that you and I
    introduced together, H.R. 1852, the Children's Hospital
    Graduate Medical Education Support Reauthorization Act of 2011.
    The Children's Hospital Graduate Medical Education program is a
    true success story. As every parent knows, it is so important
    to have a trusted doctor to turn to when your child gets sick.
    Since 1999 the Children's Hospital Graduate Medical Education
    program has helped to make sure that the doctor is there and
    prepared to diagnose any symptoms our children face.
        Today we are still experiencing a shortage of pediatric and
    specialty physicians in New Jersey and across the country. So
    you can imagine how disappointed I was to see that the
    President suspended funding for the GME program in this year's
    budget.
        In 2009 the program supported the training of 5,361
    resident positions nationally. When it was first created in the
    1990s the program single-handedly reversed the declines in
    pediatric training programs which threatened the stability of
    the pediatric workforce. Continuing its critical program, it is
    certain to have the same major impact on promoting access to
    primary care and an access to specialty care for children.
        The small class of hospitals that receive this funding,
    which includes the Children's Specialized Hospital in my
    district in New Brunswick represents about 1 percent of
    hospitals nationwide but trains approximately 40 percent of all
    pediatricians. In addition, the funding allows all 56 hospitals
    in 30 States who participate to enhance hospitals' research
    capabilities and improve hospitals' ability to provide care to
    vulnerable and underserved children.
        Chairman Pitts, together, along with nearly 100 of our
    colleagues who are cosponsors, we recognize that this
    legislation will help keep doctors in the pipeline who are
    prepared to address the special health care needs of our
    Nation's children.
        Now, today we are also considering the Combating Autism
    Reauthorization Act of 2011. Autism spectrum disorder affects
    so many children in the United States, including my State of
    New Jersey. In fact, CDC has estimated that one in 110 children
    are classified as having an autism spectrum disorder. In New
    Jersey that number is more prevalent, affecting one in every 94
    children, the highest prevalence in the Nation. Despite the
    high numbers of cases and the growing focus on this disease,
    there are still many providers who are unaware of the best
    methods to diagnose and treat the disorder, and that is why
    autism awareness is so important.
        We must treat autism as a condition of urgent public health
    concern and raise awareness in education of the disorder. As
    such, Congress recognized this public health crisis. In 2000 we
    passed the Children's Health Act that included specific
    activities related to autism, such as research at NIH, other
    developmental disability surveillance and research, and
    information in education. Those programs have continued to be
    reauthorized, the last time in 2006, with the acknowledgement
    that unfortunately the prevalence of autism continues to grow.
        And that is why I support H.R. 2005 which reauthorizes
    these programs until 2014. This critical bill will help
    educate, promote research, promote early screening and advanced
    early diagnosis of autism spectrum disorders and other
    developmental disabilities.
        I just wanted to say I know we had a very short weekend, we
    were only home, I guess, Saturday and Sunday, but interestingly
    enough, without my constituents knowing that either of these
    bills were on the agenda today, I actually had people--you
    know, just regular constituents--who came up to me at various
    events and mentioned what I was going to do about both of these
    areas. And I said, well, in fact we are having a hearing
    Monday. We are going to address both of these problems. So
    thank you, Chairman Pitts, and thank you again for the
    bipartisan nature of this.
        Mr. Pitts. Thank you.
        Mr. Pallone. Mr. Chairman, could I ask that these letters
    be admitted to the record--or I ask unanimous consent. I think
    you have them all. It is the National Association of Children's
    Hospitals, American Academy of Pediatrics, Association of
    American Medical Colleges, American Hospital Association and
    American Medical Association.
        Mr. Pitts. Without objection, so ordered.
        [The information follows:]
        [GRAPHICS NOT AVAILABLE IN TIFF FORMAT]

        Mr. Pallone. Thank you.
        Mr. Pitts. Thank you, Mr. Pallone. And at this time I yield
    5 minutes to the vice chairman of the subcommittee, Dr.
    Burgess, for his opening statement.

    OPENING STATEMENT OF HON. MICHAEL C. BURGESS, A REPRESENTATIVE
                  IN CONGRESS FROM THE STATE OF TEXAS

        Mr. Burgess. I thank the chairman for yielding. I thank you
    for holding the hearing on these two important
    reauthorizations.
        Let me focus my time on H.R. 1852, the Children's Hospital
    Graduate Medical Education Support Reauthorization Act of 2011.
    I am grateful to have had the chance to help author and serve
    as a cosponsor of the Children's Hospital GME Support
    Reauthorization Act of 2011 with Chairman Pitts, Ranking Member
    Pallone, and Mrs. Capps.
        In the decade since the program was first fully funded, it
    has proved to be a significant success. Graduate medical
    education levels the playing fields between adult and
    children's hospitals in regards to the training programs and
    provides a dedicated source of funding to train future doctors
    in cutting-edge pediatrics. According to the American Academy
    for Pediatrics, for most subspecialties there are, on average,
    100,000 and 200,000 children per provider across hospital
    regions. There are only about 28,000 pediatric medical
    subspecialists and surgical specialists to care for over 80
    million children in the United States.
        Prior to the Children's Hospital GME enactment, the number
    of residents in Children's Hospitals' residence programs had
    declined by over 13 percent, but the passage of this bill has
    enabled, and the appropriate funding has enabled the Children's
    Hospitals to reverse this decline and increase their training
    by 35 percent.
        Texas has an even greater need of more pediatricians and
    pediatric subspecialists. Texas currently has 60 pediatricians
    per 100,000 children, well below the national average of just
    under 90. But Children's Graduate Medical Education has helped
    close that gap through Texas Children's Hospitals. For example,
    Children's Medical Center Dallas is one example of a premier
    hospital whose mission has been greatly enhanced by the
    Children's Hospital Graduate Medical Education and has found
    that over 68 percent of the residents they train go on to
    practice within a 100-mile radius of the training facility.
        Of course I am reminded that just a few years ago, probably
    8 years ago in 2003, Children's Hospital in Dallas had that
    stunning success where they separated the two little Egyptian
    twins who had been born conjoined. And I saw a special on NPR a
    few nights ago about how their progress has continued now that
    they are back in their native country. But what an incredible
    day that was through that lengthy operation. It required the
    building of a special operating table, it involved all
    departments within the hospital. They all came together and
    worked diligently to save these two little boys. And it was an
    incredible story that was told in 2003 and still chokes you up
    when you see it many years later. But Children's adds a
    priceless asset to the region, and access to specialists and
    subspecialists across the north Texas area.
        So I am grateful that our witnesses are here with us today.
    I am looking forward to hearing their testimony and how these
    programs are administered and how these reauthorizations will
    continue the great work that has already commenced.
        Mr. Chairman, I would be happy to yield the balance of my
    time to anyone on our side who would seek recognition. If not,
    I will yield back.
        Mr. Pitts. The chair thanks the gentleman.
        We will proceed with the testimony at this time. I thank
    the witnesses for agreeing to appear before the committee. The
    first witness is Dr. Janet Heinrich. She is the Associate
    Administrator of the Bureau of Health Professions at the Health
    Resources and Services Administration. This is the entity that
    oversees the Children's Hospital Graduate Medical Education
    program.
        Our second witness is Dr. Thomas Insel, the Director of the
    National Institute of Mental Health at the National Institutes
    of Health and the chair of the Interagency Autism Coordinating
    Committee.
        Your written testimony will be made part of the official
    record. We ask that you summarize your opening statement in 5
    minutes.

     STATEMENTS OF JANET HEINRICH, ASSOCIATE ADMINISTRATOR, BUREAU
         OF HEALTH PROFESSIONS, HEALTH RESOURCES AND SERVICES
     ADMINISTRATION, DEPARTMENT OF HEALTH AND HUMAN SERVICES; AND
     THOMAS INSEL, DIRECTOR, NATIONAL INSTITUTE OF MENTAL HEALTH,
                     NATIONAL INSTITUTES OF HEALTH

        Mr. Pitts. Dr. Heinrich, you may begin your prepared
    testimony.

                      STATEMENT OF JANET HEINRICH

        Ms. Heinrich. Chairman Pitts, Ranking Member Pallone and
    members of the subcommittee, thank you for the opportunity to
    testify today on H.R. 1852, the Children's Hospital GME Support
    Reauthorization Act of 2011. I am Jan Heinrich, Associate
    Administrator of the Bureau of Health Professions at the Health
    Resources and Services Administration. We appreciate your
    interest in our work and welcome the opportunity to discuss the
    Children's Hospital GME program with you.
        First I would like to give you an overview of HRSA and give
    you an idea of our vision and mission. HRSA helps the most
    vulnerable Americans receive quality primary health care
    without regard to their ability to pay. The agency works to
    expand access to health care for millions of Americans--the
    uninsured, the underinsured and the vulnerable. HRSA recognizes
    that people need to have access to primary care, and through
    its programs and activities the agency seeks to meet these
    needs.
        In addition to helping the most vulnerable Americans
    receive quality care, we also serve as a source of support for
    the Nation's health profession's education and training
    infrastructure through our work with medical schools, nursing
    schools, residency training programs and community-based
    training organizations. Our programs fund the full spectrum of
    training programs, from pipeline programs aimed at youth,
    hoping to interest them in health professions; to support for
    students and residents in health professions training; to
    ongoing investments in the continuing education needed to
    maintain the workforce skills in a changing health care
    environment.
        We also support the infrastructure for quality health
    professions training, including faculty development,
    innovations in training, curriculum changes and the development
    of community-based clinical training sites to expose students
    to the diverse needs of our communities. HRSA programs
    demonstrate our commitment to ensuring that the Nation has the
    right practitioners with the right skills working where they
    are needed most.
        The focus of today's hearing is the children's GME payment
    program, and I would like to provide an overview for you. The
    CHGME Payment Program is authorized by section 340(e) of the
    Public Health Service Act through fiscal year 2011, as was
    stated, and is administered by the Bureau of Health
    Professions. The program provides Federal funding to the
    Nation's Children's Hospital to help them maintain the Graduate
    Medical Education programs that train resident physicians.
        Since its implementation in 2000, CHGME has provided more
    than $2.5 billion to children's hospitals to support residency
    training for general pediatrics, pediatric medical and surgical
    subspecialists, as well as pediatric experiences for adult
    medical and surgical specialists in other fields, as well as
    dentists. The CHGME funding is determined by annual
    appropriations. The size of the appropriation, the number of
    participating hospitals and the number of residents trained
    each year impact the amount of resources each participating
    children's hospital will receive from the program. Funds are
    distributed among eligible institutions based on statutory
    formulas that reflect direct and indirect Graduate Medical
    Education expenses. Payments are made to participating
    children's hospitals on a monthly basis. Much of what we know
    about the Children's Hospital Payment Program comes from annual
    reports to HRSA that participating children's hospitals are
    required by current law to submit.
        Let me give you some basic statistics. In fiscal year 2010
    the program supported 56 children's hospitals located in 29
    States and Puerto Rico which were responsible for the training
    of about 5,800 FTE residents. To determine the CHGME support, a
    participating Children's Hospital may include in its
    calculation of full-time equivalent residents both its full-
    time residents and the portion of time associated with
    residents who rotate through the hospital.
        In fiscal year 2010 the average award through the program
    was $5.4 million. It is important, though, to help you
    understand that there is a wide range in the amounts that each
    hospital receives. That range is between $21,000 to about $22
    million in a couple of facilities. This variation, again in
    dollars, is due to the variation in the size of the residency
    training program and the number of residents. The estimated
    overall average award per resident FTE is about $71,000. In
    fiscal year 2011, $268 million was appropriated for the CHGME
    program.
        And, Mr. Chairman, I am happy to answer any questions.
        Mr. Pitts. Thank you Dr. Heinrich.
        [The prepared statement of Ms. Heinrich follows:]
        [GRAPHICS NOT AVAILABLE IN TIFF FORMAT]

        Mr. Pitts. Dr. Insel, you are recognized for 5 minutes for
    your opening statement.

                       STATEMENT OF THOMAS INSEL

        Mr. Insel. Thank you. Good afternoon, Chairman Pitts and
    Ranking Member Pallone, members of the committee. I am Tom
    Insel. I am the Director of the National Institute of Mental
    Health at the NIH, and I have served as the Chair of the
    Interagency Autism Coordinating Committee, which I will call
    the IACC, which was originally created by the Children's Health
    Act of 2000 and then reestablished by the Combating Autism Act
    of 2006. I have been Chair since my arrival at NIH in 2002, so
    I have been doing this for quite a few years.
        First I would like to express my appreciation for the
    opportunity to give you some background on how the existing act
    has facilitated unprecedented collaboration between Federal
    agencies and private organizations, enabling what I think is
    really amazing progress in the field of autism research and
    serving to sharpen our focus as well on the need for better
    services for people with autism and for their families.
        At NIH we are very grateful for the strong support that you
    in Congress have always shown for us and the thousands of
    researchers around the country that we support. And as Chair of
    the IACC, I also would like to express the gratitude of all the
    Federal agencies--and there are many that are members of the
    committee--for your continued interests and encouragement.
        The Combating Autism Act, which I will call the CAA, had
    five general provisions: centers of excellence; surveillance;
    education for early detection and intervention; the IACC, that
    is, this coordinating committee; and then a section on
    authorization for funding.
        The 11 autism centers of excellence, the surveillance
    efforts at the CDC, the programs for early detection and
    intervention and funding for all of these programs is
    authorized to continue with or without reauthorization of the
    Combating Autism Act. The one provision that requires
    reauthorization to continue is this IACC, this coordinating
    committee. And that is scheduled to sunset on September 30,
    2011. That is basically precisely what it says within the act.
        For this reason let me just focus for a few moments on this
    coordinating committee and what it has accomplished. I will be
    happy to take questions from you later about other provisions
    if you have interest in any of them.
        A word about autism for those of you who aren't close to
    this area, although I appreciate the comments from Mr. Pallone
    that most people are hearing more about autism than they might
    have ever imagined. Autism is now called autism spectrum
    disorder, meaning that it is a diverse collection of disorders
    that share in common impairments in verbal and nonverbal
    communication skills and social interactions, as well as,
    restricted, repetitive and sometimes stereotype patterns of
    behavior.
        By definition the disorder starts by age three. The degree
    and specific combination of impairments can vary from one
    individual to the next, creating a heterogeneous disorder that
    can range in impact from actually quite mild to severely and
    significantly disabling.
        Two decades ago, Dr. Burgess, when you were in medical
    school and I was in medical school, we probably didn't hear
    much about it, but at this point we are amazed by how frequent
    we are seeing autism in clinics, particularly in pediatric
    clinics, in neuropsychiatric clinics, where the CDC's latest
    prevalence estimates are 1 in 110 children, that is 1 in 70
    boys, that is amongst the 8-year-old cohort today being
    diagnosed with autism spectrum disorder. And it is therefore
    that the disorder has become an urgent national health
    priority.
        In 2006 Congress passed the Combating Autism Act to
    strengthen Federal coordination around this issue and to
    enhance public-private collaborations in order to accelerate
    research to improve the lives of people with ASD and their
    families.
        The CAA, the act itself, outlines the membership of this
    committee. This IACC includes both representatives of Federal
    agencies and public members representing a diverse set of
    stakeholder groups within the community. Currently the IACC
    includes two people with autism spectrum disorder, several
    parents of children and adults with ASD, members of advocacy
    research and service provider communities, and officials from
    several Federal agencies.
        There are actually six parts of the Department of Health
    and Human Services: Department of Education, and, in addition
    to that, five NIH institute directors, as well as Francis
    Collins, the Director of the NIH, who also serves on this
    committee. You can imagine the challenge of trying to chair
    such a committee, but it has actually been quite inspiring to
    have this group of people around the table.
        The major autism research and service organizations
    represented on this committee include Autism Science
    Foundation, Autistic Self-Advocacy Network, Autism Speaks, Safe
    Minds, the Simons Foundation, the Southwest Autism Research and
    Resource Center, and the UC Davis MIND Institute. So it is a
    very diverse, very experienced, and I think very committed
    group.
        In addition to the voices and perspectives added by the
    members of the IACC, the committee has fostered public
    participation by having public comment periods at every full
    meeting, regularly inviting written public comments, conducting
    formal requests for information from the public and holding
    town hall meetings. And it has provided a high level of
    transparency for the public by actively disseminating
    information about the IACC activities via email, the IACC Web
    site, Webcasts and even Twitter. By including both Federal and
    public members on the committee and by fostering public
    engagement through a variety of means, the IACC ensures that a
    diversity of ideas and perspectives on ASD are brought to the
    table to inform the activities and recommendations of the
    committee. This is a committed group, by all measures; while
    the law only requires the committee to meet twice a year, since
    2007 the committee has met around 16 times per year, including
    full committee and subcommittee meetings, workshops and town
    hall meetings, the most recent of which was a subcommittee
    meeting this morning at 8:00 a.m. So this is a very, very
    active group.
        I think given the time and the number of questions I hope
    you will have, I am not going to go into a great deal of detail
    about some of the research and some of the efforts that this
    committee has accomplished. There is actually quite a bit we
    could talk about. All of this is in the written testimony, and
    I would just steer you towards that.
        Let me say that looking back over the past 5 years since
    the passage of the act, I think that this committee has really
    served to focus efforts across the Federal Government, bringing
    these Federal agency representatives for research services and
    education, bringing parents, people with ASD, scientists,
    clinicians and others together to work as a team to address the
    issues that face everyone, and bringing a wide variety of
    expertise to what is really a difficult and, I must say,
    evolving area. In doing so it has produced a strategic plan to
    guide and focus Federal research efforts and to catalyze
    public-private partnerships.
        And hopefully at this time we can talk a bit about what
    some of those are, while also providing a forum for public
    discussion and identification of additional needs from the
    community. And those needs continue to emerge and have been
    something that the committee has continued to adapt to. I think
    we have seen some remarkable progress in the identification of
    how common ASD is within communities, how ASD develops, how we
    can detect it at increasingly earlier ages, and what types of
    interventions, most importantly, the interventions that are
    most effective, especially in very young children.
        The research is moving rapidly towards translation into
    practical tools that can be used in the clinic and community
    settings to change outcomes for people with ASD. In this time
    span, Federal agencies have coordinated efforts to enhance
    critical service programs, identify best practices to support
    the education, health, and employment needs of people on the
    spectrum, and to develop new mechanisms and strategies to
    enable broad access to health care services and supports, all
    leading towards improvement in the quality of life for people
    with ASD.
        Mr. Pitts. All right. If you can wrap up.
        Mr. Insel. I will. The CAA established the IACC to provide
    advice to the Secretary of HHS regarding matters related to ASD
    to create a forum where the public could be actively involved
    in the process and to develop a strategy to guide national
    research efforts. While there has been unequivocal progress,
    much work remains to be done. The reauthorization will be
    critical for continuing this momentum and the stability over
    the IACC over the next 3 years.
        I look forward to your questions. Thank you.
        Mr. Pitts. OK. Thank you, Doctor.
        [The prepared statement of Mr. Insel follows:]
        [GRAPHICS NOT AVAILABLE IN TIFF FORMAT]

        Mr. Pitts. I will begin the questioning now, and I
    recognize myself for 5 minutes for that purpose.
        The Interagency Autism Coordinating Committee has been
    praised because it has brought together various HHS agencies
    that work with autism. Can you explain how the agencies
    interacted before the creation of the IACC?
        Mr. Insel. Well, I actually wasn't around prior to that
    time. And I must, say since we have been operational since 2000
    as a committee, it is probably fair to say that prior to 2000
    there was a fairly meager investment from most of the agencies
    in autism. There was certainly less than one-fourth of the NIH
    commitment that we have today. There was activity at the CDC in
    terms of epidemiology, but autism was not seen at that point as
    quite the priority it is today.
        Mr. Pitts. The Combating Autism Act consists of the
    function of the CDC, HRSA, NIH and the Interagency Coordinating
    Committee. If the Combating Autism Act is not reauthorized,
    would NIH, CDC, and HRSA be able to continue its activities
    related to autism?
        Mr. Insel. It will be able to continue its activities
    contingent on appropriations. So I often like to say that
    authorization here is essentially a driver's license. Agencies
    serve as our vehicle. We have got a great road map through the
    strategic plan that the IACC has put together, but at the end
    of the day, whether we have got gas in the car or not depends
    on the appropriators.
        Mr. Pitts. Let me ask a few questions about the strategic
    plan in 2011. What have you learned about risk factors for
    autism spectrum disorders, especially in light of recent news
    of an elevated risk of autism in children whose mothers took
    antidepressants in the year before delivery?
        Mr. Insel. Well, we have got a number of things that are
    emerging through the studies that are longitudinal to look at
    exposures that may increase risks. We also have increasing
    evidence for the importance of genetics as a risk factor.
    Perhaps 15 percent of children with a diagnosis of autism
    spectrum disorder are found today to have a genetic mutation.
    Many of these we didn't know about even 6 months ago. So that
    is an emerging area of risk as well.
        Probably the most important area going forward is
    understanding how these genetic and environmental effects
    interact and to put people at the greatest risk.
        Mr. Pitts. Would you describe, please, the new diagnostic
    tools for early screening and diagnosis of autism spectrum
    disorders?
        Mr. Insel. What is the most exciting on the diagnostic
    front is the possibility that we could begin to detect autism,
    not at age 4-1/2 or 4 and 3 months, but before the second
    birthday. And the way in which that is happening, really it
    happens--the most recent data comes from two fronts. One is
    just a simple 5-minute screening device that is available in
    the pediatrician offices that would be done at 12 months. And
    we are seeing that that picks up about 30 percent of the cases.
        In fact, where this was piloted in San Diego, those
    pediatricians who agreed to do it as part of the pilot have
    continued to take this on, and we now have over 1,000
    pediatricians in San Diego County who are continuing to work
    with this possibility of actually extending that much more
    broadly.
        But I think where we are getting even more traction is from
    the possibility that we could detect autism through sort of a
    biomarker; that is, looking at things like eye scanning, look
    at other very subtle behavioral changes that might not show up
    with a simple checklist coming from parents. Doing that, it
    looks like we have got about 100 percent sensitivity--I am
    sorry, 100 percent specificity, as early as 14 months by using
    a simple video monitor task to detect who will look at faces
    versus who will look at geometric shapes as a preference. And
    we have been able to now show the power of that to detect
    autism very quickly and very early on.
        Mr. Pitts. Are there any significant gaps in the research
    plan that need to be filled?
        Mr. Insel. There certainly are. I think the two places that
    we are seeing the greatest emerging need is watching the
    transition to adulthood. And this was a place that the IACC
    hadn't really been focused in 2008 and 2009. But as time has
    gone on, what we have heard from the public and what we are
    hearing from in meetings that we have in the IACC, is this
    aging cohort. Here, aging means becoming adults, going from
    being children with autism to being young adults, and the fact
    that many of the social supports and the service resources that
    are available to students and to children with autism are no
    longer available as people with autism become adults. It is
    important for us to look at that and to think about both the
    research and service needs at that point.
        The second I would say is, much more broadly, how services
    are provided throughout the country. There is an amazing amount
    of heterogeneity, not only in the needs of people with autism,
    but in the way that those needs are met across various States.
    You and Mr. Pallone happen to come from States that are
    particularly enlightened in their policies for what they do for
    people with autism, but that is not true in all 50 States, and
    the need to think about creating some standards that will be
    helpful as best practices I think is an emerging and actually
    an urgent need for people on the spectrum and for their
    families.
        Mr. Pitts. Thank you. My time is expired. The chair
    recognizes the ranking member for 5 minutes for questioning.
        Mr. Pallone. Thank you, Mr. Chairman. I am trying to get in
    half of Dr. Heinrich and half of Dr. Insel. We will see how I
    do.
        Dr. Heinrich, I wanted to ask about the children's GME. We
    know it is critical to physicians that--you know, to pediatric
    physicians. But I wanted to clarify the difference between this
    program and Medicare GME. Can you briefly explain the obstacles
    for freestanding children's hospitals to access Medicare GME
    for training pediatricians?
        Ms. Heinrich. Sure. The Medicare GME formulas that are used
    to reimburse hospitals really are heavily dependent on the
    services provided to the Medicare population, which usually are
    people 65 and over with various acute chronic conditions. With
    the freestanding children's hospitals, you do not have that 65-
    and-over population for the most part, you have children. So it
    disadvantages the Children's Hospital immediately. There also
    is a section of the law that makes it more difficult for
    children's hospitals, actually.
        Mr. Pallone. Can I ask you, are we still seeing a decline
    in the number of pediatricians trained now that we have the
    program?
        Ms. Heinrich. Are we seeing a decline?
        Mr. Pallone. Yes. I mean, I know that at one time before
    the program began there was a decline, but is that still true?
        Ms. Heinrich. To the best our knowledge we are continuing
    to see that residency positions are expanding for pediatricians
    overall. And as we look at numbers of providers, it looks like
    the number of pediatricians are continuing to expand. Whenever
    we talk about the numbers, though, we always have to be worried
    about that retiring population, because just as our overall
    population is aging, so are the health care providers.
        Mr. Pallone. I mean, when I talk to physicians--and I know
    there were some recent reports by your agency for pediatrics--
    they usually complain that the subspecialists are what we need
    more; in other words, that we need more people going to certain
    subspecialties. And I know in February 2000, there was a report
    by HRSA that concluded there was a shortage in pediatric
    rheumatologists. And then we expanded the number by 75 percent.
    In December 2008, expert work group on pediatric subspecialty
    capacity HRSA recommended that we expand graduate medical
    education for pediatric subspecialists. Do you agree with the
    findings of these reports in terms of the subspecialists?
        Ms. Heinrich. Congressman Pallone, I am not familiar with
    those particular reports. But anything from 2007 that we have
    published would have been based on even earlier data, so I
    would consider that old data. I prefer actually to see those
    reports and get back to you on whether or not we agree or
    disagree.
        Mr. Pallone. But you agree that the subspecialists in
    general need more support, right? In other words, that that is
    a problem, the subspecialties per se?
        Ms. Heinrich. You know, we have heard as you have from the
    professional associations, that there are shortages in these
    various subspecialties. It is just always very difficult to
    determine the demand for the program.
        Mr. Pallone. I am going to cut you off only because I want
    to go to Dr. Insel, but thank you.
        Let me just ask you these--a couple of these questions. In
    your remarks you mentioned a recent study involving twins which
    found that environmental factors, not just genetic factors, may
    be at play. And these findings are somewhat controversial, as
    you know.
        So I had three questions.
        First, would you explain these findings in more detail?
    Would you give us a brief summary of what the research shows in
    terms of the role of genetics? And to the extent--the third
    one--to the extent environmental factors may be involved, what
    kind of environmental factors are we talking about? I am
    jumping right in because we don't have a lot of time.
        Mr. Insel. Sure. I know.
        Let me give you the numbers because this has gotten quite a
    bit of press and it is easy to misunderstand or over-interpret
    what they mean. This was the largest study done to date on
    twins. And we divide twins into those who are identical, where
    they share 100 percent of their DNA, and those who are
    fraternal, sharing 50 percent of their DNA, which is the same
    as you would expect from siblings.
        So just to cut to the chase, in the general population it
    rates about 110, so you can imagine sort of a 1 percent risk in
    the general population. If you have a sibling with autism, your
    risk goes up somewhere between 4 and 14 percent, depending on
    the study you look at. The new data with twins says that
    fraternal twins, for a diagnosis of autism spectrum disorder,
    would be in about the 31 percent concordance rate, and that is
    pretty high. So that is 30-fold higher than the general
    population. Identical twins with 100 percent DNA shared will be
    at 77 percent for autism spectrum disorder, a little bit lower
    for peer autism.
        So what this study ended up saying, and I think where the
    confusion has come from, is that on a basis of some very
    complicated mathematical modeling, that that represented about
    58 percent of the risk being environmental and about 38 percent
    being genetic, meaning more of this was environmental than
    genetic.
        Frankly I don't think that is helpful. I think it may be
    more useful to try to go after the complexity of this by
    understanding how environments and genetics interact. It is
    important to recognize that autism is really sort of an
    umbrella term and it is representing many different syndromes.
    Some of those syndromes are absolutely genetic: Fragile X, Rett
    syndrome, Tuberous Sclerosis, very, very high rates of autism
    in each of those. They all involve a genetic lesion. So in
    those cases you are talking about autism in the context of a
    genetic disease.
        There may be some, and we don't really know the number, in
    which the disorder is really generated by environmental factors
    yet to be determined. But there is a lot of research going on
    to try to track down what those could be. Much of the data that
    we have so far, and we are still I think early days on this,
    has been pointing to factors that impact second trimester, so
    prenatal or early postnatal factors in some cases. And there is
    a range of them that are coming particularly out of the UC
    Davis effort that is funded by, at this point, by NIH and by
    EPA and CDC where there is a number of things going on.
        In this case one of the things they are looking at, well,
    they have got not only the antidepressant study that you have
    already mentioned, but there are questions about environmental
    exposures to certain kinds of chemicals and fertilizers. There
    are questions about medications, particularly valproic acid,
    which has been raised as a likely insult. There are other
    issues around whether certain kinds of illness prenatally might
    predispose and be a risk factor.
        The bottom line is we still don't know. And we don't know
    of any factor that gives us more than a small amount of the
    risk that explains much of this increase.
        Mr. Pallone. Thank you, Mr. Chairman. Thank you.
        Mr. Pitts. Thank you. And the chair now yields to the
    gentleman from Ohio, Mr. Latta, for 5 minutes for questions.
        Mr. Latta. Well, thank you, Mr. Chairman. I appreciate the
    opportunity. And to our guests, thanks very much for being
    here. Both of these are subjects I know that all of us face
    when we go home with a lot of questions.
        And Dr. Heinrich, just recently I was over in Cleveland at
    the Rainbow Babies Hospital, and it is an incredible facility
    they have over there. And you know, just to give you a couple
    of statistics, you know, as we were talking about prior to the
    enactment of CHGME in 1999, in 2000 it showed that Rainbow
    trained 69 residents and 26 fellows; today the hospital is
    training 112 residents and 68 fellows. I guess the first
    question is if the CHGME is not extended, who will do this
    training?
        Ms. Heinrich. I don't think that there is any one of our
    programs that could make up the gap if the funding is not
    continued for the CHGME program. The children's hospitals are
    eligible for our ongoing competitive programs. For example, in
    our physician expansion program there were several children's
    hospitals that together I think were given about $13 million.
    The pediatric hospital residency programs can also apply to our
    ongoing primary care residency programs, for example, so they
    are eligible for other funding opportunities.
        Mr. Latta. Thank you. In your testimony on page 4, you say
    that approximately one-third of the CHGME payment goes for
    direct graduate medical expenses and two-thirds are for
    indirect graduate medical expenses. Can you tell me what those
    indirect medical expenses are?
        Ms. Heinrich. The indirect expenses may be expenses that
    the hospital identifies as associated with their training
    activity, whereas the direct expense is for support of the
    resident and for very specific training such as curriculum
    development or faculty.
        Mr. Latta. Thank you.
        And Dr. Insel, if I could ask you a couple of questions
    here in my remaining time. And I know that when I was in Ohio
    legislature quite a few years ago, I had quite a few families
    and groups I met with during that time. And one of the things
    that--could you tell me, when you were talking about the five
    general provisions, you used the word ``surveillance.'' How
    would you define surveillance?
        Mr. Insel. This is looking at the prevalence; that is, the
    number of--in this case it is 8-year-olds, there is a new study
    of 4-year-olds as well, who have a diagnosis of autism spectrum
    disorder.
        Mr. Latta. OK. And also, it shows in the last two decades
    ASD was considered a rare disorder, and now you are saying that
    1 in 110 children are being diagnosed with. What were those
    kids being diagnosed with before?
        Mr. Insel. That is a great question. We don't know how many
    of these children were diagnosed with some other disorder like
    childhood schizophrenia, sometimes mental retardation. One of
    the things that has changed over time is that you can now give
    a diagnosis of autism spectrum disorder and have one of these
    other diagnoses. Prior to 1991 that was not an option. But it
    still is not clear that all of these children had something
    else.
        One of the questions that I think we need to really grapple
    with is whether this is a real increase. And I think most
    people who have been in this field, as I have for more than two
    decades, would say that it is not simply changing diagnosis, it
    is not simply greater awareness, it is not simply ascertainment
    that is better, but that there is a true increase--as there is
    in asthma, Type I diabetes, and food allergies--there are more
    people affected with autism today than there were two decades
    ago.
        Mr. Latta. With my remaining minute to go, if I could just
    get two more questions in real quick. One is, you know, if a
    child is diagnosed before the age of two, what drugs are out
    there today that are working for them?
        Mr. Insel. For medications for what we now think of as a
    neurodevelopmental disorder, we are sitting pretty empty-
    handed. We have medications that help on some of the secondary
    symptoms like helping with some of the temper tantrums,
    sometimes with some of the more compulsive behavioral pieces of
    this. But the reality is that the core symptoms--that is, the
    social deficits, problems in communication, some of this narrow
    attention--we don't really do very well with any medications.
    The best treatments have been behavioral. And those treatments
    in fact appear to be more effective when started early in life,
    18 to 24 months, rather than later after age 4.
        Mr. Latta. I see my time is up, and I yield back, Mr.
    Chairman. Thanks very much.
        Mr. Pitts. The chair thanks the gentleman, and yields to
    the gentleman from Michigan, the Ranking Member Emeritus, Mr.
    Dingell, for 5 minutes for questions.
        Mr. Dingell. Mr. Chairman, I thank you.
        These questions will be directed to Dr. Heinrich. Doctor,
    the questions here are going to be simplified to a yes or no
    answer. The Children's Hospital GME program was intended, as I
    recall it, to correct any unintentional disparity between the
    Federal Government's support for Graduate Medical Education
    that left children's hospitals without support, especially
    given the freestanding children's hospitals generally do not
    provide care to patients eligible to receive Medicare.
        Now, the question, do you feel that the Children's Hospital
    GME program was successful in addressing the disparity between
    freestanding children's hospitals in other teaching hospitals,
    yes or no?
        Ms. Heinrich. I believe it is yes.
        Mr. Dingell. Thank you. Now, in proposing to eliminate the
    Children's Hospital GME program, the President's budget
    justification called for a need to devote additional resources
    to train in primary care. The question: Are health services
    related to pediatrics considered to be primary care, yes or no?
        Ms. Heinrich. Yes.
        Mr. Dingell. Now, Doctor, are health services related to
    family medicine considered to be primary care, yes or no?
        Ms. Heinrich. If services to, I am sorry, family?
        Mr. Dingell. Well, let me repeat it. Are health services
    related to family medicine considered to be primary care?
        Ms. Heinrich. Family medicine, yes.
        Mr. Dingell. Now, Doctor, are health services related to
    internal medicine considered to be primary care, yes or no?
        Ms. Heinrich. Internal medicine before people
    subspecialize, yes.
        Mr. Dingell. Yes, thank you. Now, Doctor, my understanding
    is that 60 percent of the pediatricians trained by the
    Children's Hospital GME program are in general pediatrics, and
    hospitals in the program also provide pediatric training for
    residents in internal medicine and family medicine. Would you
    agree, then, that the Children's Hospital GME program helps to
    expand the primary care workforce, yes or no?
        Ms. Heinrich. Our numbers aren't as high as yours, but yes,
    part of what they--a number of the people that they train are
    in primary care.
        Mr. Dingell. Thank you, Doctor. Now, isn't this, then, in
    line with the President's goal of training additional
    physicians in primary care, yes or no?
        Ms. Heinrich. Part of the program is in line with the goal
    of increasing the number of providers in primary care, but we
    would say that it is important to focus our energy and our
    resources on the competitive programs.
        Mr. Dingell. So the answer is yes?
        Ms. Heinrich. Partially, yes.
        Mr. Dingell. Now, Doctor, in fiscal year 2000, the number
    of residents and fellows receiving Federal Children's Hospital
    Graduate Medical Education funding was a little over 4,200.
    Your testimony points out that in fiscal year 2010 the program
    supported approximately 5,800. The HRSA online performance
    index for the fiscal year 2012 budget submission notes that
    there has been continuous yearly growth between 3 and 6 percent
    in the number of resident full-time training equivalents at
    Children's Hospital since the inception of the program.
        Question: Would you agree that this increase in the number
    of trainees reflects the continuing need to train pediatric
    physicians, yes or no?
        Ms. Heinrich. Yes, we do feel that there is a need to
    continue to train pediatric residents.
        Mr. Dingell. And, Doctor, I want you to understand these
    are friendly questions, these are not hostile, we are not
    trying to push you into any sand traps or anything here.
        Now, in the 2010 application for the Children's Hospital
    GME funds, children's hospitals reported that half of their
    growth revenue for inpatient care and almost half of the growth
    revenue for outpatient care was for Medicaid and CHIP. Given
    that children's hospitals serve a large number of Medicaid and
    CHIP patients, as well as the uninsured, now the question,
    wouldn't you agree then, that these hospitals serve as an
    important safety net for families in need?
        Ms. Heinrich. I would have to go back and check on the
    numbers that you have provided.
        Mr. Dingell. I don't think the numbers are important,
    though, but they are substantial. And so can't we say on the
    basis, though, of almost any large numbers, that these
    hospitals are in fact an important safety net for families in
    need?
        Ms. Heinrich. I think that they are part of the safety net.
        Mr. Dingell. I guess I am over time. Thank you, Mr.
    Chairman, for your courtesy.
        Mr. Pitts. The chair thanks the gentleman, and now yields 5
    minutes to Dr. Burgess for questions.
        Mr. Burgess. Thank you, Mr. Chairman.
        Dr. Heinrich, help me if you can, understand what is going
    on with Dell Children's Medical Center in Austin, Texas. It
    established a new teaching program in 2007, at a time Federal
    regulations said that new programs could receive children's
    graduate education funding if they were accredited as a new
    program by an accrediting body such as the Accreditation
    Council for Graduate Medical Education.
        Then two years later in 2009, HRSA had a change of heart,
    and although Dell had been receiving funding for 2 years as an
    accredited teaching program, HRSA notified Dell that because of
    an interpretation by the Centers for Medicare and Medicaid
    Services to protect Medicare funds, Dell would no longer be
    receiving that funding.
        Now, my understanding is that HRSA made that decision
    because CMS clarified its rules regarding which programs could
    qualify as new. The regulations issued at the time indicated
    that this change by CMS was undertaken to protect Medicare
    entitlement funds; is that correct?
        Ms. Heinrich. It certainly was associated with the CMS
    regulations on the determination of a new program.
        Mr. Burgess. Well, and the protection of entitlement funds,
    which would be under the jurisdiction of the Center for
    Medicare and Medicaid Services. So the rules are in place to
    protect Medicare funds, but considerations are very different
    for a Children's Graduate Medical Education program because
    they are funded with discretionary funds and grants. We
    appropriate those funds as part of the annual appropriations
    process.
        So why the discrepancy there? Why are discretionary funds
    appropriated by the Congress being withheld as if they were
    mandatory funds being administered by CMS?
        Ms. Heinrich. I can't respond specifically to the different
    funding source and what difference that makes.
        Mr. Burgess. Well, look, all through the continuing
    resolution debate, we were told we couldn't touch entitlement
    funding because we were only dealing with discretionary money
    in the continuing resolution. OK, now the shoe is on the other
    foot and we have got appropriations discretionary funding going
    to Children's Graduate Medical Education, Dell Children's
    Hospital, Austin, Texas. And you are saying that because we are
    protecting mandatory funding, you can't have that money
    anymore.
        I guess what I would ask is, will you work with me and my
    office to see if we can resolve this if there is a legislative
    fix that is needed so that people understand more clearly their
    individual roles in this? I think it is a--it is bound to just
    be an oversight, but it is one of those things that we have to
    fix because the money is not going where it was intended.
        Ms. Heinrich. We would be very happy to work with you and
    your office in looking into this.
        Mr. Burgess. Well, let me ask you another question. The
    HRSA Online Performance Index for your fiscal year 2012 budget
    submission, it states ``the program''--speaking of Children's
    Graduate Medical Education--``the program also improves access
    to health care by expanding the capacity of the health care
    safety net at freestanding children's hospitals for underserved
    children and families.''
        So that is correct, right?
        Ms. Heinrich. Yes.
        Mr. Burgess. Well, why was the administration's choice then
    to zero out the budget for Children's Hospital Graduate Medical
    Education in 2012? It apparently worked, but you are zeroing
    out the funding. Can you help us understand why that would be?
        Ms. Heinrich. In these challenging budget requirements, it
    is very difficult; and we have to make very difficult choices.
        Mr. Burgess. I get that, because we are knee-deep in that--
    neck-keep in that right now.
        Ms. Heinrich. Yes.
        Mr. Burgess. But, again, according to your own views and
    estimates on the Web, this program is working; and yet the
    President chose to zero it out. It just doesn't seem to make
    sense.
        Ms. Heinrich. It is a very hard choice to decide which of
    the programs when you have to make cuts must be cut.
        Mr. Burgess. Dr. Insel, but I run out of time, let me just
    ask you a question. You gave us some rather dramatic figures
    of--was it, in male children, one out of every 80?
        Mr. Insel. One in 70.
        Mr. Burgess. One in 70. That was the 8-year-old cohort. You
    have been at the NIH since 2002, so you have seen that 8-year-
    old cohort double in age. Do any of these children age out of
    the process? What is happening now with those 16-year-olds? Is
    it one in 70 16-year-olds?
        Mr. Insel. Generally, children with autism become teenagers
    with autism, become adults with autism. They may adapt. They
    may be better to function better. Many of these children are
    able to go through a regular school system but only with a
    great number of supports and often a very extensive and
    intensive set of behavior therapies. The average estimate for
    cost over a lifetime is $3.2 million per person on the
    spectrum.
        Mr. Burgess. Thank you, Mr. Chairman.
        Mr. Pitts. The chair thanks the gentleman and yields to the
    gentleman from Kentucky, Mr. Guthrie, for 5 minutes for
    questioning.
        Mr. Guthrie. Thank you, Mr. Chairman, and thank you, Dr.
    Heinrich, for coming. I am going to focus most of my questions
    on Dr. Insel.
        But I have a lot of people that contact me about autism. I
    am from Bowling Green, Kentucky. The Kelly Autism Center is a
    new part of Western Kentucky University that an entrepreneur's
    family started when their grandson was diagnosed with autism.
    So it touches all families, all places.
        You kind of highlighted on some focus, so what I am going
    to do is kind of cede my time to you to kind of get through, if
    you would--you focused on second trimester with some things
    that you are focusing on. What are you seeing? What is on the
    horizon? I know you said you put a plan together. I know there
    are a lot of unknowns.
        You have 4 minutes. I know you ran out of time on your
    testimony. Can you give just an overview of where we are and
    where we think we are going?
        Mr. Insel. Sure. Very quickly, what we often do in science
    is go where we have the most traction; and, right now, that is
    in genetics. The cost of doing a human genome has gone from $2
    billion to $2,000 in the time that I have been at NIH, which is
    less than 10 years. So that gives you some mileage. And doing
    that has been informative, even in the last couple of months
    where we have been able to use the power of genomics to
    identify mutations that we didn't know were present that seemed
    to be associated with high risk and, in some cases, may be
    causative for autism.
        But, clearly, that is going to hit a wall. I think what we
    are going to discover is that that will explain part of the
    population; and I don't think it is going to explain the
    increase, because your genome doesn't change over two decades.
        So the interest now is in increasingly looking at what
    could be the environmental factors that are hitting those
    people who are genetically susceptible; and, as I was saying
    before, we have a very short list at this point because this is
    in some ways a relatively new area of investigation. And, to be
    honest about it, we don't have the traction in finding
    environmental factors that we do have in finding genetic
    sequence changes. So this is a long, expensive, and difficult
    process that mostly deals with large population studies and
    goes after correlations. So it is not quite the same as what we
    have been doing in genetics.
        That said, there are a number of projects under way, some
    of which are looking at younger siblings where we know there is
    a great risk, picking them up as soon you have a positive
    pregnancy test and following them. Some are looking at large
    birth cohorts, both in Norway, Denmark, and now in the United
    States. Some are looking in great detail at environmental
    factors across both pregnancy and the first 3 years of life.
        All of those, when done longitudinally, may begin to flesh
    out some signals, but right now the signals we have are
    relatively week. They may show, like with the antidepressants,
    perhaps a two-, maybe even a threefold increase in risk, but
    nothing like the 70-fold increase in risk you have for having
    an identical twin.
        Mr. Guthrie. OK. And that is where we are, kind of the
    state of the art where we are. Where do you think we will be in
    the next--I know it is maybe just guessing.
        Mr. Insel. I think part of the reason why I said there is
    some confusion about genetics versus environment is I think
    where we may end up is learning to use the power of genomics to
    actually finding environmental factors. So one of the things we
    know about from cancer research, for instance, is that
    environmental factors through somatic mutations on particular
    cells lead to changes in cell division and increased risk for
    tumor formation.
        The same thing could be happening in the brain. We don't
    know that. The same thing could be happening in the germ cells
    that create the fetus. All those are opportunities to begin to
    track down changes in the genome, either because they are
    mutations or because they are modifiers of how the genome is
    read. And that is what the environment does. The environment
    can do that.
        So we may be able to find the footprints of environmental
    exposures by looking at the genome long after they take place.
    We are not there yet, but we now are getting the tools--and by
    ``now'' I mean in the last year or two--we have the tools to
    begin to do this with great precision and great throughput. And
    at that point I think we will be able to make a little more
    progress than we have to look for environmental causes.
        Mr. Guthrie. Thank you.
        I will use my last 30 seconds, just a couple of seconds,
    just to compliment what is happening in Bowling Green with the
    Kelly Autism Program. I don't know if you are familiar with it
    or not, but Suzanne Vitale, who is the grandmother of Philip
    Proctor, I guess he is about 11 now, maybe 12, and performs in
    plays and things like that. So if you put intensive therapy
    into someone, it can really help. They have the resources to do
    so. We just need to get the resources here as we want other
    kids to have the same opportunities.
        Mr. Insel. Well, thank you. There is no group of people
    that I have met that are more inspiring than the families of
    people with autism. These are really dedicated parents who make
    things happen.
        Mr. Guthrie. Thank you.
        I am out of time. I yield back.
        Mr. Pitts. The chair thanks the gentleman and recognizes
    the gentleman from Georgia, Dr. Gingrey, for 5 minutes of
    questioning.
        Mr. Gingrey. Mr. Chairman, thank you.
        I will go to Dr. Heinrich first.
        Dr. Heinrich, these questions I think have already been put
    to you maybe a little bit by Chairman Emeritus Dingell, but I
    would like to get you to respond once again. In proposing to
    eliminate the Children's Health Graduate Medical Education, the
    President's budget justification called for a need to devote
    additional resources to train in primary care. Yet--and I think
    you may have said this--60 percent of the pediatricians trained
    by CHGME hospitals are in general pediatrics, primary care;
    and, additionally, the Health Graduate Medical Education
    hospitals provide pediatric training for residents in internal
    medicine and family medicine. And you had stated to Mr. Dingell
    that both of those were primary care, particularly internal
    medicine, before they go on to subspecialize. How is it that
    this administration does not recognize that Children's Health
    Graduate Medical Education hospitals provide essential support
    for the future primary care workforce for our Nation's
    children?
        Ms. Heinrich. We are not saying that this isn't a
    successful program. Our latest figures are that about 46
    percent of the resources are going into general pediatrics,
    maybe 27 percent to the pediatric subspecialists, and then
    another 27-28 percent that go to the other residents who rotate
    through the children's hospitals. We are simply saying that in
    this environment you have to make hard choices; and, in this
    instance, that is what we have done for the 2012 budget
    request. We are also saying that pediatricians can be trained
    in other facilities and can be trained through other types of
    programs.
        Mr. Gingrey. Thank you.
        Dr. Insel, the research on autism conducted at the Autism
    Centers of Excellence have been described by some as being
    redundant and too focused maybe on gene and diagnosis research
    and not on, for example, things like autoimmune problems. In
    addition, there is concern that administrative costs are too
    high and they take away much-needed funds from research.
    Comment on these criticisms for me, if you will. And I will
    have a follow-up question: Do you believe that autism research
    efforts are well coordinated?
        Mr. Insel. Well, there are 11 Autism Centers of Excellence.
    They represent about altogether less than $25 million of the
    investment from NIH, which is now about $218 million for 2010.
    So they are just a little bit more than perhaps 10 percent of
    our investment.
        They are places where there is a wide range of research.
    Some of it does in fact involve genetics. But one of the most
    recent networks funded is all about environmental factors, the
    early--and early in this case stands for early autism risk
    longitudinal investigation study, which is pulled together by
    Drexel University, Dr. Newschaffer, looking at actually the
    long-term exposure history for people who are at risk for
    autism. So I wouldn't think it would be accurate to say that
    they are only about the genetics of autism. That is one of the
    things that happens. There is also treatment development,
    biomarkers, a whole range of things that are going on in those
    centers.
        What about the coordination? I think that one of the
    successes of the IACC has been to increase coordination not
    only within the Federal agencies, where you see CDC and NIH and
    HRSA working much better on many of these questions, but
    perhaps in this area most importantly between the Federal
    agencies and some of the private foundations.
        Autism is a little unusual in the world that I live in,
    because this is a place where there is quite a bit of private
    money now coming in to support research in a very exciting way.
    And that is----
        Mr. Gingrey. Let me interrupt you for a second, because I
    am about to run out of time, and I did want to ask you one last
    question.
        In your testimony, you talked about identical twins and the
    prevalence of autism in regard to--my question really is, why
    isn't it 100 percent? If you have got--it is either DNA or
    genetic-related or environmental, and you say, who knows, 60-
    40, 50-50, 40-60. But those identical twins obviously have the
    exact same DNA and they have been exposed, as has their mom, to
    the exact same environment, certainly through 1-and-a-half to 2
    years of age. So why isn't it 100 percent?
        Mr. Insel. Right. So it is important to remember that
    autism is not cystic fibrosis, Huntington's Disease, or a
    number of other single-gene, truly genetic disorders. In fact,
    it is not a single disorder. When we use the term autism, it is
    like talking about epilepsy, or maybe talking about fever.
    There are many, many different syndromes that end up in this
    umbrella term. Some of them, as I mentioned before, may truly
    be 100 percent genetic; and in those twins, if one has fragile
    X, the other will have fragile X, and they may both have
    autism.
        But that doesn't cover more than perhaps 15 percent of the
    population as we know it right now. And for the rest, many
    disorders that are in this umbrella, under this umbrella, there
    may be many other sorts of ways to think about how to get
    there, and some of them could be environmental.
        Mr. Gingrey. Thank you, and I yield back.
        Thank you, Mr. Chairman.
        Mr. Pitts. The chair recognizes the gentleman from
    Louisiana, Dr. Cassidy, for 5 minutes nor questions.
        Mr. Cassidy. Again, I only have 5 minutes, if I cut you
    off.
        I am trying to get my head around--so, previously, CHGME
    for pediatrics got roughly how much money and then how much in
    this latest budget?
        Ms. Heinrich. OK. For the CR for 2011, we are funding it at
    $268 million; and in fiscal year '10 it was $317 million.
        Mr. Cassidy. And the President's budget zeroed it out?
        Ms. Heinrich. For 2012.
        Mr. Cassidy. Wow. Now, I am an internist. I am actually
    still on the faculty with an internal medicine program. And
    although there is collaboration between internal medicine, I
    find really pediatrics has their own gig going and internal
    medicine may have their own, and that is important. So if HRSA
    is going to be attempting to be all things to all specialties,
    in practice I just don't see that working as well. What do you
    imagine HRSA will dedicate towards pediatric training as it is
    dividing up this pool in different primary training
    specialties?
        Ms. Heinrich. Well, as you know, most of the training for
    physicians at the residency level are funded by Medicare GME,
    and we have a relatively small portion. The focus of this
    administration is to expand the primary care----
        Mr. Cassidy. But how much will this HRSA-type funding
    mechanism result in going to pediatric programs? You have been
    getting roughly $270 million. How much will result under the
    Obama budget?
        Ms. Heinrich. Within the competitive programs that we have
    for the primary care providers, it would really depend. It will
    depend on how----
        Mr. Cassidy. But you must have a ballpark.
        Ms. Heinrich. I don't, because----
        Mr. Cassidy. In that case, if I was a pediatric program, I
    would see a train coming down a tunnel. Because I would say,
    oh, my gosh, they have no clue how much they are going to be
    allocating towards pediatric programs.
        Is there no sense at all of how much--because autism is a
    pediatric disease, and our ability to train primary care
    pediatrics to do the 5-minute exam will in part depend upon the
    effectiveness of HRSA pulling this off. So HRSA has no
    guidelines or projections how much will be going to pediatric
    hospitals?
        Ms. Heinrich. The pediatric hospitals would be part of a
    competition that we would have, say, for primary care
    providers.
        Mr. Cassidy. I see that, but I guess we keep talking past
    each other. My specific question is, and it sounds like you
    don't, do you have a sense of how much money will be going to
    these programs to replace the $270 million being lost?
        Ms. Heinrich. You are right. We do not know that.
        Mr. Cassidy. That is frightening. There just seems there
    should be some sort of proactiveness involved.
        Dr. Insel, in the spectrum of ASD, I gather there are some
    people now in the ASD kind of group who formally may not have
    been recognized and may have just kind of gone through life
    always thought to be a little odd but now they are actually
    diagnosed. Is that a fair statement?
        Mr. Insel. It is.
        Mr. Cassidy. Now, you mentioned--very frightening--the $3
    million cost to society for untreated--for a person who is a
    member of the ASD group, if you will, diagnostic group, that
    $3.2 million, I assume that is for the kind of full-blown, not
    for the person who is marginal who previously would not have
    been recognized but now is included in a diagnostic spectrum.
    Is that fair?
        Mr. Insel. Correct.
        Mr. Cassidy. So what percent of the entire group so
    diagnosed with ASD would be those that would consume a large
    amount of future societal resources? Be it prison, be it
    neuralgic service, you name it.
        Mr. Insel. I can't give you a precise number for that.
        Mr. Cassidy. Can you give me a ballpark?
        Mr. Insel. I would say it is somewhere between 50 and 60
    percent of people who are on the spectrum are going to be in
    that group of people who would have been, by the way,
    identified 20 years ago because they don't have a subtle
    problem.
        Mr. Cassidy. Right. They are the ones that are going to
    consume more.
        I don't mean to be rude. I am almost out of time. What is
    going to be the cost of society and what is the potential of
    early intervention to diminish that cost?
        Mr. Insel. We have a good sense of the latter part. We know
    that early intervention for about half of these children--
    ``early'' meaning before 24 months--can lead to not only great
    improvement in IQ and adaptive behavior but potentially even to
    loss of diagnosis. So that is fairly impressive.
        The cost to society which we have tried to model out in
    various ways, I would have to submit that for the record. But I
    can tell you that the $3.2 million, on average, you can
    multiply, just to give you a ballpark, times what we think are
    the 700,000 people who are on this spectrum, and it is fair to
    say that somewhere around 500,000 are going to be on the severe
    end of the spectrum or will be in that range that is going to
    require additional support.
        Mr. Cassidy. I am over time. I could take more.
        If you could just send that as a response, the kind of a
    complete spreadsheet of this is the percent that will require
    more services and this is the mean. I say that not to impose
    upon you, but that will help guide public policy.
        Mr. Insel. I am happy to help.
        Mr. Cassidy. I yield back. Thank you both.
        Mr. Pitts. The chair thanks the gentleman.
        Without objection, the chair recognizes Dr. Christensen,
    who is not a member of the subcommittee, but is here and would
    like to ask questions for 5 minutes.
        Mrs. Christensen. Thank you, Mr. Chairman, and thank you,
    Ranking Member, as well for allowing me to sit in on this very
    informative hearing on two bills that really, as you can hear,
    enjoy bipartisan support.
        I guess I would ask Dr. Insel first, but I am really amazed
    and really pleased to have been able to read in your testimony
    all of the advances that are taking place in autism spectrum
    disorder. I am seeing a lot more attention paid to it in my
    district as well. So I want to commend the IACC for all of the
    work that has been done in these 10 or so years. I can't see
    how we could have had the same kind of coordination without the
    committee. So I want to thank you and the committee members for
    your service.
        My question is related to some of the health disparities we
    deal with, Dr. Insel. Given the lesser access to quality health
    care that is experienced by racial and ethnic minorities and
    the often-reported under-diagnosis of some disabilities and
    mental illness in these groups, are you seeing disparities in
    the diagnosis and treatment of ASD in people of color? And, if
    so, does the IACC have a plan to address it?
        And just an additional part to that question, are the
    territories included in your outreach to the public and
    providers?
        Mr. Insel. Well, thank you for those questions.
        Yes, the disparity is there. There is nothing unique about
    autism in terms of health equity. We have many of the same
    problems you see in the rest of health care.
        The difference here, though, may be a little more profound
    in the sense that where we see the greatest disparity is the
    age of diagnosis. Children are diagnosed, but not at age 4 but
    at age 6. And remember what I said before, that the early
    interventions appear to have the most profound improvements,
    the greatest impact on prognosis. So you have lost a real
    opportunity there to have that kind of an impact. So this is
    enormously important.
        The strategic plan, especially the one that is out in 2011,
    it mentions specifically the importance of having a diverse
    portfolio in terms of looking at many different communities and
    making sure that issues around health disparities are
    addressed. That is a major piece of it.
        I should just finish by saying that I don't believe the
    territories itself have been an area of outreach, but I can
    again find out more about that and submit that for the record.
        Mrs. Christensen. Thank you.
        My understanding is in children with disabilities in the
    U.S. Virgin Islands specifically, it is somewhere about 4 to 5
    percent of those children are diagnosed with ASD.
        Dr. Heinrich, what percent of pediatric residents are
    supported by this CHGME? I know we have talked about what
    percentage of the pediatric residents are in primary care. But
    is it about half?
        Ms. Heinrich. It probably is about half, but I could get
    back to you with the specific number, if you wish.
        Mrs. Christensen. OK. And are there any plans in place,
    given the passage of the Patient Protection and Affordable Care
    Act and the increase in the number of individuals or families
    that will be covered, for what kind of an increase in pediatric
    primary care you might need? I realize we have Medicaid and
    SCHIP. But have there been any projections?
        Ms. Heinrich. We don't have a projection specifically for
    pediatrics, but we have expanded the primary care workforce
    through the Affordable Care Act in 2010 and continue some of
    that in 2011. So, for example, we have funded additional
    primary care residency training programs, and there were about
    six children's hospitals that are participating in that
    program. They did very well. We are also expanding the nurse
    practitioner primary care programs and the PA primary care
    programs, for example.
        Mrs. Christensen. Let me see if I can get another question
    in.
        My original plan was to go into adolescent medicine,
    although I decided to do it through family medicine, but you
    still probably paid for part of my pediatric training. Do you
    have input into the design of the training programs in the
    pediatric residencies that you support and do you see any
    specific attention being paid to that adolescent population
    that has unique needs that are not necessarily what we consider
    pediatric?
        Ms. Heinrich. We don't design the curriculum or the
    training programs. Those are really determined by the
    accrediting bodies, if you will. Of course----
        Mrs. Christensen. Is there consideration for whether you
    fund them or not?
        Ms. Heinrich. Well, the law requires that any entity that
    qualifies can participate in the program. But in the law it
    does say that there will be special attention to underserved
    populations and quality, for example, so that is stipulated in
    the law.
        Mr. Pitts. The chair thanks the gentlelady.
        That completes the first rounds of questions. We will go to
    one follow-up on each side.
        The chair recognizes Dr. Burgess for 5 minutes for follow-
    up.
        Mr. Burgess. Thank you, Mr. Chairman.
        Dr. Insel, I apologize for being out of the room when Dr.
    Gingrey's questions were being asked, but let me just be sure I
    understand correctly. I think the concern that was being
    addressed there was that the general and accounting side of the
    ledger is consuming more of the dollars that then can't go to
    the R&D side of the ledger. Is that basically the tension that
    is there?
        Mr. Insel. I am afraid I don't follow the question.
        Mr. Burgess. Are we spending more for the centers than we
    are getting in excellence? Are we spending more for the
    administrative side than we are getting on the research side?
        Mr. Insel. Well, the centers are all research centers. So
    the centers of excellence are part of----
        Mr. Burgess. Who is responsible for constructingthe budget
    and the oversight of that budget? Is that NIMH or is that NIH?
        Mr. Insel. I think it is the National Institute of Child
    Health and Human Development.
        Mr. Burgess. Perhaps they could provide us, Mr. Chairman,
    with--what would be reasonable--the last 3 years of budgetary
    figures?
        Mr. Insel. I can give you--I mean, the range is between 22
    and 26 million, depending on how you cut that pie over the last
    3 years. Overall funding in 2010 for NIH was $218 million. So,
    as I said, it is roughly about 10 percent of our overall
    investment in autism research.
        Mr. Burgess. On the breakdown of the autism research
    dollars themselves, I guess the discomfiture is there are those
    that say we are spending more for overhead than we are actually
    getting in research.
        Mr. Insel. So--I apologize. I didn't really understand
    where you were going.
        So the centers are the research centers. The overhead,
    which is true across our entire portfolio, is quite a different
    matter. So it doesn't matter whether we are paying an
    individual grantee or paying a center. The overhead rates are
    going to depend on the institution that the money goes to, and
    that overhead generally averages out about 50 percent or a
    little bit more for most institutions.
        Mr. Burgess. That seems high, but maybe it has just been
    too many years that I have been involved on the research end.
    But if you could provide us with some of those budgetary
    figures, I think that would be helpful.
        Mr. Insel. Just so I understand, what you would like to see
    are what the overhead figures are within the autism realm----
        Mr. Burgess. You have 12 centers of excellence?
        Mr. Insel. Eleven.
        Mr. Burgess. Within those 11 centers of excellence.
        Mr. Insel. I would be happy to provide that.
        Mr. Burgess. Well, let's take then just a broader view of
    your world. You know, advances in brain science have been
    occurring at a significantly more rapid rate the past decade
    than any decade prior; and whether it be Alzheimer's, traumatic
    brain injury, autism, you guys are accumulating a vast body of
    knowledge. What do you see over the horizon? Are you learning
    things in your study of autism that are helpful in other areas
    of brain science, like those suffering with Alzheimer's and
    those suffering with traumatic brain injury?
        Mr. Insel. Very much so. In fact, one could ask why is NIMH
    leading the charge on autism when autism is usually considered
    either a neurological or pediatric disorder and not necessarily
    a classical or prototypical mental illness. And yet for us this
    has been the prototype that we have wanted to follow. We think
    about all mental illnesses increasingly as neuro-developmental.
    The difference is that the symptoms of schizophrenia start at
    age 18 rather than age 3 or 2 in autism. But many of the
    aspects of the biology, the biology mostly having to do with
    how neurons connect and how they develop. So we tend to now
    think about autism as a synaptic disease; and we are
    increasingly talking about schizophrenia, mood disorders, other
    disorders, as synaptic diseases as well. So I think we are
    going to learn from autism important insights that will play
    out all across the spectrum of neuro-development.
        Mr. Burgess. And with the last reauthorization at the
    National Institutes of Health, the provision was made for
    translational research which gave the director, in this case
    Dr. Collins, some discretionary authority that the director had
    not had before. Do you see this as being something that has
    been helpful as far as being able to work across the various
    silos and agencies within the institute?
        Mr. Insel. Absolutely. And I would say that Dr. Collins'
    focus on translational science here couldn't be more urgent for
    autism. I think you may have been out of the room when I
    pointed out that, even though this is considered a
    developmental brain disorder, the only treatments we have at
    this point are behavioral, that is the treatments for the core
    symptoms that are effective. So we have an urgent need to
    create a pipeline for medications that might help. Perhaps they
    would be medications that would make behavior therapy more
    effective.
        Mr. Burgess. Correct. That behavior therapy seems to be
    labor intensive and expensive, if I caught the end of your
    comments to Dr. Cassidy correctly.
        Mr. Insel. Yes.
        Mr. Burgess. Thank you for your time, Mr. Chairman. I yield
    back.
        Mr. Pitts. The chair thanks the gentleman and recognizes
    the ranking member, Mr. Pallone, for 5 minutes for follow up.
        Mr. Pallone. Thank you, Mr. Chairman.
        I know you mentioned, as the chair of the IACC, you
    described many efforts and apparently many successes which have
    resulted from your committee's work. In the coming weeks, our
    committee is going to be taking up a proposal to grant the
    Secretary explicit authority to establish on her own
    coordination committees for specific diseases and conditions
    without additional authorizing language. As we consider this
    proposal, it would be helpful to get your insights on what
    worked and what didn't work, you know, what worked best or what
    didn't work in terms of the IACC's own activities. So I wanted
    to ask you, in your own words, why has the IACC apparently
    succeeded in actually doing what the Combating Autism Act
    intended, and then what elements or operations of the committee
    made it work so well?
        Mr. Insel. Well, I wouldn't want to suggest for a moment
    this has been easy. I mean, I think it has been successful, but
    there have been a lot of bumps in the road, and I think we have
    learned along the way.
        I have to say this is an area where I believe many members
    of the autism community felt that the government wasn't
    responsive and that the Federal agencies were asleep at the
    wheel. And I think one of the things the IACC has done is to
    make those people in the community--and this is a very diverse
    community--but making that diverse group of participants,
    keeping them as really part of the process and making sure that
    not only did we listen to them but they had a chance to hear
    what we struggled with, and we could do a number of things
    together.
        One of the things that has been perhaps most gratifying for
    us--and I am not sure how well this would work in other areas--
    is the opportunity to actually create specific public-private
    partnerships around key projects. A huge issue in autism is the
    physical health of children with autism. They have lots of
    problems besides the behavioral ones I described. Yet we didn't
    have good best practices for how to deal with sleep
    disturbances, how to deal with seizures, how to deal with some
    of the gastrointestinal problems that are really quite common
    in some children with autism.
        So one of the things that came out of an effort from Autism
    Speaks, which is one of the foundations for autism, was to
    create a the national network called the Autism Treatment
    Network, ATN, 17 sites across the country. We could partner
    with them. HRSA has also partnered with Autism Speaks on the
    same network.
        That has I think been a big part of the success, is
    creating those kinds of partnerships that might have been
    difficult to do without the IACC as a forum to get those needs
    and to also prioritize the needs all at one time.
        Mr. Pallone. I appreciate that.
        I yield back, Mr. Chairman.
        Mr. Pitts. The chair thanks the gentleman.
        That concludes our questioning for the panel, excellent
    panel, very informational.
        This will conclude today's hearing. I remind members that
    they have 10 business days to submit questions for the record,
    and I ask the witnesses to please agree to respond promptly to
    the questions.
        The subcommittee is adjourned.
        [Whereupon, at 3:32 p.m., the subcommittee was adjourned.]
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