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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 

( 

Printed for the use of the Committee on Energy and Commerce 

energycommerce.house.gov 

COMMITTEE ON ENERGY AND COMMERCE 

FRED UPTON, Michigan 

Chairman 

JOE BARTON, Texas 

Chairman Emeritus 

CLIFF STEARNS, Florida 

ED WHITFIELD, Kentucky 

JOHN SHIMKUS, Illinois 

JOSEPH R. PITTS, Pennsylvania 

MARY BONO MACK, California 

GREG WALDEN, Oregon 

LEE TERRY, Nebraska 

MIKE ROGERS, Michigan 

SUE WILKINS MYRICK, North Carolina 

Vice Chairman 

JOHN SULLIVAN, Oklahoma 

TIM MURPHY, Pennsylvania 

MICHAEL C. BURGESS, Texas 

MARSHA BLACKBURN, Tennessee 

BRIAN P. BILBRAY, California 

CHARLES F. BASS, New Hampshire 

PHIL GINGREY, Georgia 

STEVE SCALISE, Louisiana 

ROBERT E. LATTA, Ohio 

CATHY MCMORRIS RODGERS, Washington 

GREGG HARPER, Mississippi 

LEONARD LANCE, New Jersey 

BILL CASSIDY, Louisiana 

BRETT GUTHRIE, Kentucky 

PETE OLSON, Texas 

DAVID B. MCKINLEY, West Virginia 

CORY GARDNER, Colorado 

MIKE POMPEO, Kansas 

ADAM KINZINGER, Illinois 

H. MORGAN GRIFFITH, Virginia 

HENRY A. WAXMAN, California 

Ranking Member 

JOHN D. DINGELL, Michigan 

Chairman Emeritus 

EDWARD J. MARKEY, Massachusetts 

EDOLPHUS TOWNS, New York 

FRANK PALLONE, JR., New Jersey 

BOBBY L. RUSH, Illinois 

ANNA G. ESHOO, California 

ELIOT L. ENGEL, New York 

GENE GREEN, Texas 

DIANA DEGETTE, Colorado 

LOIS CAPPS, California 

MICHAEL F. DOYLE, Pennsylvania 

JANICE D. SCHAKOWSKY, Illinois 

CHARLES A. GONZALEZ, Texas 

JAY INSLEE, Washington 

TAMMY BALDWIN, Wisconsin 

MIKE ROSS, Arkansas 

JIM MATHESON, Utah 

G.K. BUTTERFIELD, North Carolina 

JOHN BARROW, Georgia 

DORIS O. MATSUI, California 

DONNA M. CHRISTENSEN, Virgin Islands 

KATHY CASTOR, Florida 

SUBCOMMITTEE ON HEALTH

JOSEPH R. PITTS, Pennsylvania 

Chairman 

MICHAEL C. BURGESS, Texas 

Vice Chairman 

ED WHITFIELD, Kentucky 

JOHN SHIMKUS, Illinois 

MIKE ROGERS, Michigan 

SUE WILKINS MYRICK, North Carolina 

TIM MURPHY, Pennsylvania 

MARSHA BLACKBURN, Tennessee 

PHIL GINGREY, Georgia 

ROBERT E. LATTA, Ohio 

CATHY MCMORRIS RODGERS, Washington 

LEONARD LANCE, New Jersey 

BILL CASSIDY, Louisiana 

BRETT GUTHRIE, Kentucky 

JOE BARTON, Texas 

FRED UPTON, Michigan (ex officio) 

FRANK PALLONE, JR., New Jersey 

Ranking Member 

JOHN D. DINGELL, Michigan 

EDOLPHUS TOWNS, New York 

ELIOT L. ENGEL, New York 

LOIS CAPPS, California 

JANICE D. SCHAKOWSKY, Illinois 

CHARLES A. GONZALEZ, Texas 

TAMMY BALDWIN, Wisconsin 

MIKE ROSS, Arkansas 

JIM MATHESON, Utah 

HENRY A. WAXMAN, California (ex officio) 

(II) 

(III) 

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 

(1) 

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 ChilVerDate Aug 31 2005 15:38 Sep 07, 2012 Jkt 037690 PO 00000 Frm 00005 Fmt 6633 Sfmt 6633 F:\112-07~1.PUB\112-72~1.PUB WAYNE
2 

dren’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:] 

3 


75755.001

Opening Statement of Rep. Joseph R. Pitts 

Energy and Commerce Subcommittee on Health Hearing on 

"Legislative Hearing on Miscellaneous Public Health Legislation" 

July 11,2011 

(Remarks Prepared/or Delivery) 

Today's legislative hearing will focus on two bills: H.R. 1852, the Children's 

Hospital Graduate Medical Education (CHGME) Reauthorization Act of 20 11, a 

bill I introduced with Ranking Member Pallone, and H.R. 2005, the Combating 

Autism Reauthorization Act of 20 11, introduced by Rep. Chris Smith. 

I will focus my remarks on the CHGME reauthorization. 

In his FY12 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 free-standing 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 of 

UPMC, and st. Christopher's Hospital for Children. 

Due to its proximity, many of my constituents travel to the Children's Hospital of 

Philadelphia to seek treatment for their children. 

The CHGME program trains 40 percent of our nation's pediatricians and 43 

percent of pediatric sub-specialists. 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 sub-specialists. 

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 five years. 
4 


75755.002

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, and also to support Rep. Chris Smith's 

Combating Autism Reauthorization Act, H.R. 2005. 
5 

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:] 

6 


75755.003

Opening Statement of Chairman Fred Upton 

Subcommittee on Health Hearing on 

"Legislative Hearing on Miscellaneous Public Health Legislation." 

July 11, 2011 

(Remarh Preparedfor Delivef~V) 

This afternoon's legislative hearing gives the subcommittee an opportunity not only to review 

the progress of two impOltant bills, but also to demonstrate our ability to work in a bipartisan 

manner. 

With the passage of CHGME in 1999, freestanding Children's Hospitals began receiving funds 

to support their pediatric medical residency programs. As a result, the number of pediatricians in 

the US has steadily grown. Today, over 40 percent of pediatricians and pediatric specialists are 

trained in the 57 freestanding Children's Hospitals that receive CHGME funding. The program 

has el1joyed bipartisan support that makes the Obama administration's decision to eliminate 

funding for CHGME in the 2012 budget very troubling. Even Secretary Sebelius expressed 

regret about the decision to zcro out CHGME while testifying before the Energy and Commerce 

Committee. We look forward to testimony from Dr. Janet Heinrich, Associate Administrator of 

the Bureau of Health Profess,ions at the Health Resources and Services Administration (HRSA), 

on the impact of CHGME on' pediatric medical residency programs and the future of the 

program. 

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 (IACC) released its Strategic Plan for Autism 

Spectrum Disorders Research that provides a blueprint for researchers and a basis for 

partnerships with the public and private sector. Recent results hom research on early screening, 

genetics, and prenatal conditions are hopeful signs that this federal effOlt is working. 

The Interagency Autism Coordinating Committee is something I am particularly interested in. 

want to hear from the witness 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 [have visits from patient groups telling a story about how a particular agency's activities 

do not compliment another's work. I-IHS is a unified Department and its ditTcring agencies 

should have the same strategic vision that is coordinated to achieve maximum results. I look 

forward to testimony by Thomas R. Insel, M.D. Director of the National Institute of Mental 

Health about the research effort at NIH and the IACC strategic plan. 
7 

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 

8 

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:] 

9 


75755.004

NatIOnal t\s~0C1at10n at 

Children" Hospitals 

M-A'C-H "".o •••••• " ••••••••••••••••• "'." 

May 19, 2011 

The Honorable Joe Pitts 

Chairman 

Subcommittee on Health 

Committee on Energy and Commerce 

United States House of Representatives 

Washington, DC 20510 

Dear Chairman Pitts, 

On behalf of the National Association of Children's Hospitals, thank you fur 

introducing H.R. 1852 to reauthorize the Children's Hospitals Graduate Medical 

Education program. We appreciate your unwavering resolve as an advocate fur 

children. The future of pediatric health care cannot he compromised, and we are 

fortunate to have champions who recognize the need to ensure the adequacy of the 

pediatric workforce for our nation's children. 

Your support for CHGME, and the tireless efforts of you and your staff, helps not only 

Pennsylvania's children and children's hospitals, it also helps to ensure that children 

throughout the nation can depend on the high-quality care they need and deserve 

from our children's hospitals. As you well know, the freestanding children's hospitals 

that receive CHGME train forty percent of all pediatricians, forty-three percent of all 

pediatric subspecialists, and the majority of pediatric researchers, even though 

children's hospitals represent only one percent of all hospitals. 

We know that Congress faces a challenging agenda this year, and we deeply 

appreciate the opportunity to work with you to ensure that children's hospitals can 

continue to train the best and brightest doctors to treat our nation's children. Thank 

you again for your leadership and support. 

Sincerely, 

J~~ 

Jim Mandell, MD 

Board Chair 

National Association of Children's 

Hospitals 

Lawrence A. McAndrews 

President and CEO 

National Association of Children's 

Hospitals 
10 


75755.005

Nanonal AssoCIation ot 

Children', Hmpitals 

M-A-C-M - _ ....... _. _ ••••••••••••••••••• 

May 19, 2011 

The Honorable Frank Pallone Jr. 

Ranking Member 

Subcommittee on Health 

Committee on Energy and Commerce 

United States House of Representatives 

Washington, DC 20510 

Dear Ranking Member Pallone, 

On behalf of the National Association of Children's Hospitals, thank you for 

introducing H.R 1852 to reauthorize the Children's Hospitals Graduate Medical 

Education program. We appreciate your unwavering resolve as an advocate for 

children. The furore of pediatric health care cannot be compromised, and we are 

formnate to have champions who recognize the need to ensure the adequacy of the 

pediatric workforce for our nation's children. 

Your support for CH GME, and the tireless efforts of you and your staff, helps not only 

New Jersey's children and children's hospitals, it also helps to ensure that children 

throughout the nation can depend on the high-quality care they need and deserve 

from our children's hospitals. As you well know, the freestanding children's hospitals 

that receive CHGME train fufty percent of all pediatricians, forty-three percent of all 

pediatric subspecialists, and the majority of pediatric researchers, even though 

children's hospitals represent only one percent of all hospitals. 

We know that Congress faces a challenging agenda this year, and we deeply 

appreciate the oppormnity to work with you to ensure that children's hospitals can 

continue to train the best and brightest doctors to treat our nation's children. Thank 

you again for your leadership and support. 

Sincerely, 

I~~ 

Jim Mandell, MD 

Board Chair 

National Association of Children's 

Hospitals 

Lawrence A. McAndrews 

President and CEO 

National Association of Children'S 

Hospitals 
11 


75755.006

May 26, 2011 

The Honorable Joe Pitts 

Chainnan 

Subcommittee on Health 

Committee on Energy and Commerce 

United States House of Representatives 

Washington, DC 20515 

Dear Chairman Pitts and Ranking Member Pallone: 

The Honorable Frank Pallone 

Ranking Member 

Subcommittee on Health 

Committee on Energy and Commerce 

United States House of Representatives 

Washington, DC 20515 

On behalf of organizations dedicated to the health of all children, we write to share our strong 

support for your bill to reauthorize the Children'S Hospital Graduate Medical Education 

(CHGME) program. As supporters of the CHGME program since its inception, we are proud to 

continue to support this important effort. 

The funding from the CHGME program helps to address an unintended but serious inequity for 

pediatric workforce and children's hospitals. This program represents significant progress toward 

Congress' goal of providing a level of federal GME support to the independent children's 

teaching hospitals comparable to what other hospitals already receive through Medicare. The 

support CHGME offers is a much-needed investment in the future of pediatric medicine and 

children's health care. 

Independent children's hospitals, with federal CHGME support, have played a key role in 

ensuring the continued growth of our nation's pediatric workforce, including pediatric 

subspecialists in short supply. CHGME has afforded children's hospitals the opportunity to 

sustain and improve their teaching programs, allowing them to expand and reverse a decline in 

pediatric residencies that began in the 1990s. Representing less than one percent of all hospitals, 

independent children's teaching hospitals train nearly 30 percent of all pediatricians and nearly 

half of all pediatric specialists. They also are the major pipeline for future pediatric researchers. 

Together, CHGME-recipient hospitals have acconnted for more than 65 percent of the growth in 

pediatric specialist training. 

In a year where budget consciousness and fiscal responsibility have taken the spotlight in all 

policy discussions, we commend you for your continued effort to prioritize child health. 

Investments in the health of children will pay dividends well into the future. 

Thank you for your life-long commitment to the health and wellbeing of children. We look 

forward to working with you to pass this important piece oflegislation. 

Sincerely, 

Benard Dreyer, MD 

Academic Pediatric Association 

President 

O. Marion Burton, MD, F AAP 

American Academy of Pediatrics 

President 
12 


75755.007

~t4t~ F. Bruder Stapleton, MD 

American Pediatric Society 

President 

Susan Furth, MD 

Society for Pediatric Research 

President 

cc: The Honorable Mike Burgess 

cc: The Honorable Lois Capps 

Alan Cohen, MD 

Association of Medical School Department Chairs 

President 
13 


75755.008

May 24, 2011 

The Honorable Joe Pitts 

Chair, Subcommittee on Health 

Energy and Commerce Committee 

United States House of Representatives 

Washington, DC 20515 

The Honorable Robert Casey 

United States Senate 

Washington, DC 20510 

The Honorable Frank Pallone 

Ranking Member, Subcommittee on Health 

Energy and Commerce Committee 

United States House of Representatives 

Washington, DC 20515 

The Honorable Johnny Isakson 

United States Senate 

Washington, DC 20510 

Dear Chairman Pitts, Ranking Member Pallone, Senator Casey, and Senator Isakson: 

On behalf of the Association of American Medical Colleges (AAMC), I write to thank you for authoring 

the Children's Hospital GME Support Reauthorization Act of 2011 (H.R. 1852/S. 958). The AAMC 

represents all 134 accredited U.S. medical schools; nearly 400 major teaching hospitals and health 

systems, including 62 Department of Veterans Affairs' medical centers; and nearly 90 academic and 

scientific societies. Through these instilntions and orgauizations, the AAMC represents 128,000 faculty 

members, 75,000 medical slndents, and 110,000 resident physicians. 

As you know, the Health Resources and Services Administration (HRSA)'s Children's Hospitals 

Graduate Medical Education (CHGME) program provides critical support for freestanding children's 

hospitals, for the future primary care workforce for our nation's children and for pediatric specialty care ~ 

the greatest workforce shortage in children's health care. CHGME hospitals train 40 percent ofal! 

pediatricians (mostly in general pediatrics), 43 percent of pediatric specialists, and the majority of 

pediatric researchers. They also provide required pediatric rotations for residents in general internal 

medicine and family medicine. 

Your leadership on this legislation will enahle the program to continue to support these activities at 

institutions across the country. As the nation's supply of physicians shriaks and demand continues to 

grow, support for physician education and training will be essential to ensure patient access to care. 

Thank you again for championing this measure and for your conunitment to education and training 

opportunities for the next generation of physicians. We look forward to working with you toward 

enactment and full funding for this critical program. 

Sincerely, 

Alnl 

~ Grover, M.D., Ph.D. 

AAMC Chief Advocacy Officer 
14 


75755.009

Amerioan Hospital 

Association 

July 8, 2011 

The Honorable Joe Pitts 

Chainnan, Subcommittee on Health 

Energy and Commerce Committee 

United States House of Representatives 

420 Cannon House Office Building 

Washington, DC 20515 

Dear Chainnan Pitts: 

On behalf of our more than 5,000 member hospitals, health systems and other health care 

organizations, and our 42,000 individual members, the American Hospital Association (AHA) 

wishes to express support for the Children's Hospital GME Support Reauthorization Act of2011 

(H.R. 1852), which would reauthorize the Children's Hospitals Graduate Medical Education 

(CHGME) program at its current funding level for the next five years. 

Congress created CHGME in 1999 to support graduate medical education programs at children's 

hospitals that train resident physicians, enhance research capabilities and care for poor and 

medically underserved children in rural and inner-city areas. The program provides funding to 

independent children's hospitals in more than 30 states to train primary care pediatricians. 

Children's hospitals treat very few Medicare patients; therefore, they do not receive Medicare 

funding to support medical training of residents. The CHGME program corrects this inequity. 

CHGME helps independent children's hospitals train more than 40 percent of general 

pediatricians, 43 percent of all pediatric specialists and the majority of pediatric researchers. 

In the face of a nationwide physician shortage and in anticipation of the increased health care 

coverage provided under the Patient Protection and Affordable Care Act, the need for 

pediatricians is greater than ever. The AHA was dismayed that President Obama's fiscal year 

2012 budget proposes to terminate CHGME. Eliminating the program will be detrimental to the 

mutual goals of strengthening the primary care workforce and ensuring timely access to critical, 

high-quality specialty care. 

We appreciate your leadership on this issue and look forward to working with you to advance 

this legislation. 

Sincerely, 

qLC?-lP~ 

Rick Pollack 

Executive Vice President 
15 


75755.010

American Hospital 

Association 

July 8, 2011 

The Honorable Frank Pallone, Jr. 

Ranking Member, Subcommittee on Health 

Energy and Commerce Committee 

United States House of Representatives 

237 Cannon House Office Building 

Washington, DC 20515 

Dear Congressman Pallone: 

On behalf of our more than 5,000 member hospitals, health systems and other health care 

organizations, and our 42,000 individual members, the American Hospital Association (AHA) 

wishes to express support for the Children's Hospital GME Support Reauthorization Act of 20 I 1 

(H.R. 1852), which would reauthorize the Children's Hospitals Graduate Medical Education 

(CHGME) program at its current funding level for the next five years. 

Congress created CHGME in 1999 to support graduate medical education programs at children's 

hospitals that train resident physicians, enhance research capabilities and care for poor and 

medically nnderserved children in rural and inner-city areas. The program provides funding to 

independent children's hospitals in more than 30 states to train primary care pediatricians. 

Children's hospitals treat very few Medicare patients; therefore, they do not receive Medicare 

funding to support medical training of residents. The CHGME program corrects this inequity. 

CHGME helps independent children's hospitals train morc than 40 percent of general 

pediatricians, 43 percent of all pediatric specialists and the majority of pediatric researchers. 

In the face of a nationwide physician shortage and in anticipation of the increased health care 

coverage provided under the Patient Protection and Affordable Care Act, the need for 

pediatricians is greater than ever. The AHA was dismayed that President Obama's fiscal year 

2012 budget proposes to terminate CHGME. Eliminating the program will be detrimental to the 

mutual goals of strengthening the primary care workforce and ensuring timely access to critical, 

high-quality specialty care. 

We appreciate your leadership on this issue and look forward to working with you to advance 

this legislation. 

Sincerely, 

C;;?oL-VdRz-L 

Rick Pollack 

Executive Vice President 
16 


75755.011

~~~~ James I.. Madara. MD 

ASSOCIATION ~ ~ 

July 11,2011 

The Honorable Joseph Pitts 

Cbairman, Subcommittee on Health 

U.S. House of Representatives 

420 Cannon House Office Building 

Washington, DC 20515 

Dear Chairman Pitts and Ranking Member Pallone: 

Frank Pallone, Jr. 

Ranking Member, Subcommittee on Health 

U.S. House of Representatives 

237 Cannon House Office Building 

Washington, DC 20515 

On behalf of the physician and medical student members of the American Medical Association 

(AMA), I am writing in support ofH.R. 1852, the "Children's Hospital GME Support 

Reauthorization Act of 20 II," which would reauthorize federal funding to support graduate medical 

education (GME) for freestanding children's hospitals. 

Leading authorities agree that by 2025 the United States will face a shortage of physicians to meet the 

needs of our U.S. popUlation. While demand for access to physician services will be increasing, 

physician shortfalls up to 130,000 across all specialties are predicted. Pediatric subspecialists who 

train at children's hospitals are among the more than 20 specialty groups already experiencing severe 

shortages. 

Furthermore, the Balanced Budget Act of 1997 capped the number of resident physicians each 

teaching hospital could claim for reimbursement under Medicare. While new U.S. allopathic and 

osteopathic medical schools are opening and many medical schools are expanding enrollments, core 

GME training programs are experiencing minimal growth due to limited funding. 

Several important workforce programs, including Title VII and the Children's Hospitals GME 

program, rely on appropriations to fund the training of physicians. This important legislation would 

authorize the necessary funding to support this vital training program for pediatricians and pediatric 

subspecialists in children's hospitals. 

Thank you for your support of residency programs that are critical for addressing our nation's 

physician workforce shortages. We look lorward (0 working with you to see this program 

reauthorized and fully funded. 

Sincerely, 

James L. Madara, MD 
17 

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. 

18 

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 

19 

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:] 

20 


75755.012

Statement of 

Janet Heinrich, Dr.P.H., R.N. 

Associate Administrator 

Bureau of Health Professions 

Health Resources and Services Administration 

U.S. Department of Health and Human Services 

Before the 

Committee on Energy and Commerce, 

Subcommittee on Health 

U.S. House of Representatives 

Washington, D.C. 

July It, 201 t 

1 
21 


75755.013

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 20 II. [am Dr. Janet Heinrich. Associate Administrator of the Bureau of Health 

Professions at the Health Resources and Services Administration (HRSA), Department of Health 

and Human Services. HRSA appreciates your interest in our work, and welcomes the 

opportunity to discuss the Children's Hospital Graduate Medical Education (CHGME) program 

with you. 

HRSA Overview 

The Health Resources and Services Administration helps the most vulnerable Americans receive 

quality primary health care, without regard to their ability to pay. HRSA works to expand access 

to health care for millions of Americans-the uninsured, the underserved and the vulnerable. 

HRSA recognizes that people need to have access to primary health care and, through its 

programs and activities, the Agency seeks to meet these needs. The Agency collaborates with 

government at the Federal. State, and local levels, and also with community-based organizations, 

to seek solutions to primary health care problems. HRSA delivers on its obligation to address 

primary carc acccss through the six Bureaus and thirteen Offices that comprise the Agency. 

In addition to helping the most vulnerable Americans receive quality care, we also serve as a 

major source of support for the nation's health professions education and training infrastructure 

through our work with medical schools, nursing schools. residency training programs and 

community-based training organizations. 

In all of these efforts, we collaborate with colleagues across the Federal government and with 

State and local governments, community-based organizations, health care providers and 

institutions, and a range of other partners. HRSA helps to train future nurses, doctors, and other 

clinicians. placing them in areas of the country where health resources are scarce. In fact, HRSA 

provides leadership and financial support to health care providers in every State and U.S. 

territory. 

HRSA's Vision, Mission and Goals 

HRSA's vision for the nation is healthy communities and healthy people. Our mission is to 

improve health and achieve health equity through access to quality services and a skilled health 

workforce. 

We carry out our mission by working toward four major goals: 

2 
22 


75755.014

• Improve Access to Quality Care and Services; 

• Strengthen the Health Workforce; 

• Build Healthy Communities; and 

• Improve Health Equity. 

We arc pleased to have the opportunity to share with you today some of the activities associated 

with our goal of strengthening the health workforce. 

HRSA's Bureau of Health Professions 

As the Associate Administrator ofHRSA's Bureau of Health Professions, 1 have the opportunity 

to direct a range of programs designed to educate and train health professionals, including 

physicians, nurses, physician assistants, dentists, public health professionals, geriatric specialists, 

psychologists, home health aides and others. 

Our programs fund the full training continuum fI'om pipeline programs aimed at developing 

young people's skills and interest 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's skills in a changing health care environment. 

We also support the important infrastructure needed to ensure the quality of health professions 

training, including faculty development, innovations in training curricula and the development of 

community-based clinical training sites to expose residents and students to community needs. 

Throughout these programs, we aim to continuously demonstrate our commitment to ensuring 

that the nation has the right practitioners, with the right skills, working where they are needed. 

Bureau priorities to help achieve this goal include the following: 

Increase the capacity and distribution of the primary care workforce supply through 

education and training opportunities; 

• Develop new team-based models of care based on interprofessional education and 

clinical training experiences; 

Reduce health disparities by training the health workforce to provide culturally- and 

linguistically- appropriate care, as well as increasing workforce diversity; 

• Assure the health workforce is trained to provide high quality, culturally and 

linguistically appropriate care; 

Enhance geriatric/elder care training and expertise; and 

• Improve workforce data collection and analysis to better inform decision-making on the 

health workforce. 

3 
23 


75755.015

Children's Hospital Graduate Medical Education (CHGME) Payment Program 

The CHGME Payment Program is authorized by Section 340E of the Public Health Service Act 

through Fiscal Year 2011 and is administered by HRSA's Bureau of Health Professions. 

The program provides Federal funds to the Nation's children's hospitals with graduate medical 

education programs that train resident physicians. CHGME funding is determined by annual 

appropriations. 

The CHGME Payment Program was originally authorized by Congress in 1999 and subsequently 

reauthorized in 2006. Since its implementation began in 2000, it has allocated more than $2.5 

billion dollars to children's hospitals that support residency training. Children's hospitals 

supported through the program train general pediatricians, pediatric medical subspecialists, 

pediatric surgical subspecialists, adult medical subspecialists, adult surgical subspecialists, and 

dentists. 

Determining Payments 

The size of the annual appropriation, the number of participating hospitals and the number of 

residents trained each year impact the amount of resources each participating children's hospital 

receives from the program each year. 

Family and internal medicine residents also do rotations in Children's Hospitals to increase their 

exposure to pediatric practice environments. A partieipating children's hospital may include 

both its full-time residents and the pOition of time associated with residents who rotate through 

the hospital in its calculation of FTE residents - or full-time equivalent residents to determine 

CHGME support. 

Funds are distributed among eligible institutions based on a formula outlined in statute that takes 

into account the number of residents trained in the hospital, the number of hospital beds, the 

number of patients discharged, and the hospital's case-mix. Approximately one third of the 

CHGME payment is for direct graduate medical expenses and two thirds are for indirect graduate 

medical expenses. 

Monthly payments are made to participating children's hospitals. Hospitals are audited, as 

required by law, to validate the number of FTE residents claimed. Once final payments are 

reconciled at the end of each fiscal year, HRSA displays payments per hospital for the fiscal year 

in a table posted on our Web site. 

4 
24 


75755.016

Participating children's hospitals are required to submit an annual report on the status of and 

changes to graduate medical education training in their institutions. 

Residents and Awards 

In Fiscal Year 2010, the program supported 56 children's hospitals located in29 states and 

Puerto Rico, which were responsible for the training of about 5,800 full time equivalent - or FTE 

residents on- and off-site. 

In Fiscal Year 2010, the average award through the program ,vas $5.4 million. Data indicate that 

awards ranged in size from $21,000 to $21.7 million. The estimated overall average award perresident FTE is about $71,000. In Fiscal Y car 20 II, $268 million was appropriated for the 

CHGME Payment Program. 

Conclusion 

H.R. 1852, the "Children's Hospital GME Support Reauthorization Act of 20 II ", would amend 

current law to extend the CHGME program through fiscal year 2016. and would also make a 

conforming date change regarding when the report to Congress is due. The Department has no 

technical comments on the bill as written. 

Thank you for the opportunity to provide an overview of the CHGME Payment Program as 

Congress considers reauthorizing the program. 

5 
25 

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 

26 

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 publicprivate 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. 

27 

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:] 

28 


75755.017

TESTIMONY OF DR. THOMAS INSEL 

DIRECTOR, NATIONAL INSTITUTE OF MENTAL HEALTH 

NA TIONAL INSTITUTES OF HEALTH 

ON 

THE COMBATING A USTIM ACT 

BEFORE THE 

COMMITTEE ON ENERGY AND COMMERCE 

US HOUSE OF REPRESENTATIVES 

1 
29 


75755.018

Good morning Chairman Pitts, Ranking Member Pallone and members of the Committee. Jam 

Tom Insel, Director of the National Institute of Mental Health (NIMH) at the National Institutes 

of Health (NIH). I have served as the Chair of the Interagency Autism Coordinating Committee 

(IACC). created by the Children's Health Act 01'2000 and re-established by the Combating 

Autism Act of 2006 (CAA), since my arrival at NIMH in 2002. 

First, let me express my sincere appreciation for the opportunity to give you some hackground on 

how the existing CAA has facilitated unprecedented collaboration between federal agencies and 

private organizations, enabling amazing progress in the field of autism research and serving to 

sharpen our focus on the need for better services for people with autism and their families. We 

at NIH are very grateful for the strong support that you in Congress have always shown for NIH 

and the thousands ofresearehers around the country that it funds. As chair of the IACC, I'd like 

to express the gratitude of all the federal agencies that are members for your continued interest 

and encouragement. 

The CAA dealt with five general provisions: centers of excellence, surveillance, education for 

early detection and intervention, the IACC, and authorization offunding. The II Autism 

Centers of Excellence, surveillance efforts at the Centers for Disease Control and Prevention 

(CDC), programs for early detection and intervention, and funding for all of these programs is 

authorized to continue with or without reauthorization of the CAA. The one provision that 

requires reauthorization to continue is the IACC, which is scheduled to sunset on September 30, 

2011. For this reason, [ will focus my remarks today on the IACC, but 1 welcome your questions 

about other provisions of the CAA. 

In order to give you the most comprehensive yet concise background. I'll briefly describe the 

lACC, its membership, its transparent process, its collaborative activities, the influential 

Strategic Plans that it has developed, and its various areas of intense interest. In short, this 

description will let you know that the IACC has fulfilled each and every requirement of the 

CAA. It has provided both an impOltant forum for public discussion of autism issues and a 

framework for a research agenda that is optimized to take full advantage of scientific 

2 
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75755.019

opportunities. As time permits, I also hope to share some examples of the very recent research 

advances that are so exciting in this field, and how these advances have been facilitated by the 

existence of the Strategic Plans developed by the [ACC with considerable public input. Finally, 

I'll discuss how the IACC has focused on the need to enhance services for people with autism. 

Autism spectrum disorder (ASD) 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 stereotyped patterns of behavior. 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 mild to significantly disabling. Two decades ago, ASD was considered 

a rare disorder. Today, with CDC's latest prevalence estimates of I in 110 children in the U.S. 

being diagnosed with ASD, this disorder has become an urgent national health priority. In 2006, 

Congress passed the CAA 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 outlines the membership of the IACC, which includes both representatives oftederal 

agencies and public members representing a diverse set of stakeholder groups within the autism 

community. Currently, the IACC includes two people with AS!), several parents of children and 

adults with ASD, members of the advocacy, research, and service provider communities, and 

officials from the following federal agencies and offices that are involved in ASD research or 

services provision: Department of Education (ED), HHS's CDC, Centers for Medicare & 

Medicaid Services (eMS), Office on Disability (OD), Substance Abuse and Mental Health 

Services Administration (SAMHSA), Administration on Developmental Disabilities (ADD) in 

the Administration for Children and Families (ACF) , Health Resources and Services 

Administration (HRSA), five institutes of NIH, and the NIH Director. Major autism research 

and services organizations represented on the lACe include Autism Science Foundation, Autistic 

Self Advocacy Network, Autism Speaks, SafeMinds, Simons Foundation, Southwest Autism 

Research & Resource Center, and the U.C. Davis M.I.N.D Institute. 

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In addition to the voices and perspectives added by the members of the IACC, the IACC has 

fostered public pmiicipation by having public comment periods at every fulllACC meeting, 

regularly inviting written public comment, conducting formal requests for information from the 

public and holding town hall meetings, and has provided a high level of transparency for the 

public by actively disseminating information about IACC activities via e-mail, the IACC 

website, 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 lACe's 

activities and recommendations, The IACC is a committed group--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. 

Under the CAA, the IACC is charged with developing and annually updating a strategic plan for 

ASD research. In fulfilling these requirements, the committee produced its first strategic plan in 

January 2009 and has issued updates in 20 I 0 and 20 II. The IACC developed its Strategic Plm1 

with a great deal of input from the publ ie, gathered through planning meetings, town hall 

meetings, and requests for information. This tremendous public input, comhined with that of 

scientific and subject matter experts and all the major federal agencies and private funders 

resulted in a plan that provided a clear path to move autism research forward in targeted, 

innovative ways to help public and private agencies prioritize activities as soon as it was 

released. The first IACC Strategic Plan was organized into six chapters that renect the needs 

expressed by the community: early and accurate diagnosis, better understanding how autism 

develops, enhanced ability to identify risk factors, development of new and more effective 

interventions and treatments, more research needed to inform and enhance services, and the 

development of better approaches to meet the changing needs of people with ASD over the entire 

lifespan. In 2010, the committee also added a chapter on the infrastructure needed to support a 

robust research effort. As you can tell, our strategic plan has a broad scope, in part because it 

was developed through the cooperation of both research and services-focused agencies and 

private organizations. While the Plan is a research plan, as the law directs, it encompasses a 

range of research that goes from fundamental biology of ASD to inform new diagnostics and 

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therapies, to the actual development of those needed tools and approaches, and finally to research 

that can inform and enhance services programs to meet the needs of people with autism across 

the lifespan. 

Fortuitously, the first strategic plan was completed just as NIH received significant additional 

funding from the American Recovery and Reinvestment Act to help stimulate the economy 

through the support and advancement of scientific research. With a strategic plan in place to 

guide priorities, NIH allocated over $122 million of additional funding between FY09 ($64 

million) and FYIO ($58 million) to autism research, supporting a variety of projects addressing 

the most critical research needs highlighted by the IACC. This was in addition to NIH's 

investment of base annually appropriated funds for autism research, which was $160 million in 

20 I O. The overall NIH investment in autism research was an unprecedented $218 million in 

20 I 0, more than double the funding prior to the CAA. 

The IACC has also fulfilled the CAA requirements to produce an annual summary of advances 

in research and to monitor federal research activities. Since 2007, the lACC has issued four 

Summary of Advances documents, which describe what the committee felt were some of the 

most exciting advances in autism biomedical and services research each year. The IACC has 

also been actively monitoring not only federally-funded research, as the CAA requires, but has 

also tracked the research funded through private organizations, making for a much more 

complete picture of the research landscape across the U.S. All of the private organizations on the 

IACC that conduct research provided their data, and we have also collected data from all U.S. 

federal agencies and additional private groups. The result has been the lACe's annual "portfolio 

analysis." The first year, the data were presented at IACC meetings, but in subsequent years the 

IACC issued full reports on liscal years 2008 and 2009 funding; the analysis of2010 data is 

currently underway. These portfolio analysis reports have provided the tirs! comprehensive look 

at autism research being conducted in the U.S. They also have facilitated a better understanding 

of how current research aligns with the IACC Strategic Plan. The committee has found both the 

summary of advances and portfolio analysis reports to be valuable tools for updating the 

Strategic Research Plan and determining the greatest areas of need for further action. 

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This year, the HIlSINIIl oJlice that supports the IACC, the Ot1icc of Autism Research 

Coordination (OARC), published a comprehensive Report to Congress, as required in the CAA, 

on federal activities that have taken place since the passage of the CAA. That report contains 

rich information about the programs and projects going on across HHS and the ED to meet the 

needs of people with autism. I urge you to take a look at this report because it provides the most 

comprehensive picture to date of how federal agencies are responding to the urgent needs of the 

autism community. The report contains details of the wide array of autism research, services and 

supports activities conducted by federal agencies, including biomedical and services research, 

public health activities, education initiatives, early screening, diagnosis and intervention services, 

provider training, healthcare delivery, social supports, and vocational training. We have copies 

of this and the other most recent reports mentioned with us and will be happy to give you copies. 

Now I'd like to share with you some of the exciting advances we have seen in ASD research. 

Since the passage of the CAA in 2006, there has been a groundswell of activity on multiple 

fronts, from game-changing scientific discoveries reshaping the field of autism research to realworld applications that can help people with ASD and their families now. 

As I mentioned earlier, one of the main provisions of the CAA was support for early diagnosis 

and intervention. CDC reports that the median age for autism diagnosis is 4 and half years of 

age and varies widely by sociodemographic group and geographic location. With recent 

advances. diagnosis by age [4 months is now a realistic possibility, and researchers are actively 

pushing the detection window to even younger ages. In April 20 It. NIH-funded researchers 

demonstrated that a simple. low-cost, practical screening tool that takes only five minutes to 

administer can be implemented by doctors' offices to detect ASD around one year of age for 

many children. More than 100 pediatricians in San Diego County, CA participated and screened 

over 10,000 one year old children using the checklists. Impressively, all pediatricians who 

participated in the study are continuing to use the tool because they recognized the tremendous 

potential it provides to identify autism earlier and direct families toward interventions that can 

result in significant positive outcomes earlier in life. Another promising diagnostic tool is a 

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simple test that detects eye gaze patterns specific to infants with autism. A group of researchers 

at University of California, San Diego who have received funding from NIH to develop such a 

test recently reported that they could identify 1-3 year old children with autism with nearly 100 

percent specificity. These promising diagnostic tools, combined with CDC's health education 

campaign, "Learn the Signs. Act Early.", to improve carly identification, provide great potential 

for reducing the age of diagnosis and allowing children and their families to get the services and 

support they need when it can help the most. 

Of course, early diagnosis is only valuable if etTective interventions are available. Recently 

published results from several successful trials of early interventions have validated approaches 

that are effective in young children, creating real promise of improved health outcomes, and 

quality of life for children with ASD. In 20 I 0, NIH investigators reported that children with 

ASD who receive a high intensity behavioral intervention starting by age 18-30 months show 

improvements in IQ, language, and adaptive behavior. to the point where the autism diagnosis no 

longer applies to some children who receive treatment. Soon after that groundbreaking study, a 

group of investigators jointly funded by HRSA and NIH reported that an intervention designed to 

enhance social engagement in toddlers indeed improved social. language, and cognitive 

outcomes. Early interventionists have noted an encouraging "problem" - new approaches that 

are being proven efTective are being taken up so quickly by the community that it is difficult to 

find "control groups" for behavioral intervention trials. While this can complicate efiorts to 

conduct randomized control trials, the real story is that parents and community practitioners are 

putting innovative strategies into practice quickly. Many ofthesc recent advances in early 

diagnosis and intervention can be credited to NIH's Autism Centers of Excellence (ACE), which 

were expanded under the CAA and now comprise II research centers at major research 

institutions across the country. 

We do not know the causes of ASD. but very recent findings comparing idcntical and fraternal 

twins suggest the importance of focusing on both environmental and genetics factors. NJf-l and 

CDC are continuing to strengthen research investigations into possible environmental causes of 

autism, establishing expansive research networks with the capability to collect large sets of data 

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on environmental exposures and health outcomes, and to conduct powerful analyses to determine 

which risk factors may be contribnting to the development of autism. Population-based studies 

are the gold standard in epidemiology research. Large sample sizes and rigorous study designs 

allow researchers to examine many variables at once. Such networks, like NIH's Childhood 

Autism Risks from Genetics and the Environment (CHARGE) and Early Autism Risk 

Longitudinal Investigation (EARLl) and CDC's Study to Explore Early Development (SEED), 

will utilize data from medical records, interviews, questionnaires, developmental assessments, 

and physical exams to explore a host of possible risk factors. focusing heavily on factors in the 

environment before, during, and after pregnancy. It will take a few more years for these research 

networks to fully mature, but already, published findings are helping establish the evidence-base 

for ruling in and ruling out possible environmental triggers. In the first half of20 11 alone, the 

CHARGE study has implicated air pollution, mitochondrial dysfunction, and immune 

dysfunction as potential mechanisms for ASD. Just this month, CHARGE investigators reported 

that use of prenatal vitamins may reduce the risk of having children with autism. In the past 

week, another study, funded by CDC and a private group, showed that widely-used 

antidepressant medications taken during pregnancy can significantly raise the risk of having 

children with autism. In addition to their work on identifying risk factors for ASD, CDC also 

continues to provide the most comprehensive estimates to date of the prevalence of ASD in 

mUltiple areas of the U.S. through its Autism and Developmental Disabilities Monitoring 

(ADDM) Network. While great progress is being made for autism, CDC's prevalence estimates 

have documented significant increases in autism in the US, which highlights the necd to continue 

research efforts and service advances being made with facilitation by the IACC activities. 

With the pace of research moving so rapidly, [am confident that our continued investments in 

novel and innovative biomedical research in ASD will pay large dividends in the future. But 

there's a strong imperative to push the best of what we know now out into the community as 

rapidly as possible. 

Iff·IS's 00 and the Assistant Secretary tor Planning and Evaluation are creating the 

infrastructure to support and conduct patient centered research 011 health services and supports 

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for people with disabilities, including autism. Their new Center of Excellence, authorized under 

the American Recovery and Reinvestment Act, is part of a national strategy for quality 

improvement in health care and the expansion of health care delivery system research with a 

focus on person-centered outcomes research. Expanding on that effort, CMS is testing and 

implementing family-driven, person-centered and home and community-based service provision 

models for people with autism. 

A common goal across many federal agencies is to support and empower people with autism to 

live more independently and enjoy an enhanced quality of life. Informed by the IACC Strategic 

Plan, NIH is making non-traditional investments in novel service and health delivery models, 

aided by the infusion of additional funds from the Recovery Act. Both the ED's Rehabilitation 

Services Administration (RSA) and miS's SAMHSA "Supported Employment Toolkit" are 

helping people with autism secure and maintain jobs in the community. Medicaid continues to 

fund supported employment and habilitation services through States' home and communitybased waiver programs, which pay for such services for many peoplc with intellectual and 

developmental disabilities across the nation. 

There are also interventions and supports that can help people with autism and their families 

today. HRSA is helping to pave the road from research to practice. Through funds provided by 

the Combating Autism Act Initiative (CAAI) under the CAA, HRSA has invested substantially 

in autism interventions to improve physical and behavioral health of people with ASD, 

practitioner training, and service provision models. I !RSA-funded investigators are examining 

critical questions, such as the impact of co-occurring health conditions in autistic individuals and 

the effectiveness of parent-mediated and peer-mediated behavioral interventions. HRSA's health 

professionals' training programs are designed to reduce barriers to screening and diagnosis by 

increasing professional capacity and raising awareness about ASD among providers in the 

community. HRSA's State Implementation Grants represent nearly $2.7 million in funds to 

assist nine States with improving services for people with ASD. These grants promise to help 

identi fy best-practices at the individual, community, and policy level. When possible, 

partnerships between agencies are being formed -- HRSA and CDC have joined to sponsor "Act 

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Early" Summits in all regions of the US and to facilitate the development of professional and 

community teams to improve the early identitication of children with autism at a local leveL 

The coordination in the autism research community is unparalleled, and the IACC has played a 

critical role in fostering the growing list of promising public-private partnerships. Last fall, the 

mother of a child with autism spoke at an IACC meeting about the need to examine the high 

prevalence of autism in the Somali community in Minnesota reported in a state-funded study 

based on school data. Working collaboratively, several NIH Institutes, CDC. and Autism Speaks 

put together a research initiative to support investigation of the reported increase in ASD 

prevalence in the Minnesota Somali community and to identify the diverse service needs of these 

Somali-American children and their families. 

As the Somali study illustrates, federal agencies recognize the autism challenge is not one we can 

tackle alone. There are a host of private organizations funding cutting-edge research, including 

four thal hold a seat on the IACC - Autism Science Foundation. the Southwest Autism Research 

& Resources Center (SARRC) and the organizations identified by the recent IACC Portfolio 

Analysis as being the 2nd and 3,,1 largest private funders ofrescarch after NIH, Simons 

Foundation and Autism Speaks. Jointly, NIH, Autism Speaks, and Simons Foundation arc 

driving several significant initiatives poised to accelerate the pace and quality of autism research. 

By developing the infrastructure and appropriate incentives, these public-private partnerships are 

encouraging data-sharing on an impressive scale, enabling scientists to do more with less. 

Additionally, NIH's National Database for Autism Research (NDAR) is federating with several 

other autism data repositories such as the Autism Speaks' Autism Genetic Resource Exchange 

(AGRE) and the public/private-funded Interactive Autism Network (IAN) to enhance 

researchers' access to data. And in the community, programs like AGRE, IAN and the Autism 

Treatment Network (A TN), that involve direct outreach to and collaboration with the patient 

community, are bringing together hundreds of researchers and clinicians with tens of thousands 

of people nationwide affected by ASD in a search for answers. 

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FederallACC member, ADD, with the help of non-profit organizations, including the Arc of the 

United States, the Autistic Self Advocacy Network (ASAN), and the Autism Society, recently 

launched the AutismNOW Project, an innovative dissemination network to provide access to 

high-quality resources and intonnation on community-based services and interventions for 

people with ASD and their families, AutismNOW offers a call center, web-based clearinghouse 

of resources, twice-weekly webinars on a variety of topics related to autism, and regional events 

for the community to co~nect in-person, 

Looking back over the past five years since the passage of the CAA, we can see how the 

establishment of the IACC has served to focus efforts across the federal government, bringing 

federal agency represcntatives (research, services, and education), parents, people with ASD, 

scientists, clinicians and others together to work as a team to address the issues, and bringing a 

wide variety of expertise to a difficult area, In doing so, it has produced a strategic plan to guide 

and focus federal research efforts and catalyze public private partnerships. while also providing a 

forum for public discussion and identification of additional needs from the community, 

We have also seen some remarkable progress in the identitication of how common ASD is 

within communities, how ASD develops, how we can detect it at increasingly earlier ages and 

what types of interventions are most effective, especially in young children, This research is 

rapidly moving toward 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 services programs, identify best practices to 

support the education, health and employment needs of people on the spectrum. and develop new 

mechanisms and strategies to enable broad access to hcalthcare, services and supports - all 

leading toward improvement in quality of life for people with ASD and their families. 

The CAA established the IACC, to provide advice to the Secretary HHS regarding matters 

related to ASD, to create a f')ful11 where the public could be actively involved in the process, and 

to develop a strategy to guide national research efforts. While lhere has been unequivocal 

progress, much work remains to be done. The reauthorization will be critical for continuing the 

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momentum and stability of the IACC over the next 3 years. It is crucial that members of the 

IACC-individuals, federal agencies and member private organizations-have stable support to 

continue their efforts to work together on autism issues. 

1 thank you for this opportunity to speak with you and look forward to addressing any questions 

that you may have. 

12 
40 

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 

41 

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 

42 

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 

43 

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. 

44 

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 greatVerDate Aug 31 2005 15:38 Sep 07, 2012 Jkt 037690 PO 00000 Frm 00048 Fmt 6633 Sfmt 6633 F:\112-07~1.PUB\112-72~1.PUB WAYNE
45 

er 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 HosVerDate Aug 31 2005 15:38 Sep 07, 2012 Jkt 037690 PO 00000 Frm 00049 Fmt 6633 Sfmt 6633 F:\112-07~1.PUB\112-72~1.PUB WAYNE
46 

pital 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. 

47 

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 

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48 

standing 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? 

49 

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 

50 

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 

51 

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. 

52 

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 

53 

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 

54 

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 

55 

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. 

56 

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 

57 

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. 

58 

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.] 

[Material submitted for inclusion in the record follows:] 

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07.11.2011 - Congressman Leonard Lance- E&C Health Subcommittee 

- CHGME and Combating Autism Reauthorization - Opening Statement 

Thank you Mr. Chairman. 

Children's Hospitals Graduate Medical Education program is one of the 

most important federal investments in strengthening children's health 

care in America. 

Independent children's hospitals have an indispensable role in the 

children's health and the pediatric workforce, training 40 percent of all 

pediatric residents and 43 percent of pediatric specialty fellows, and 

providing pediatric training for many other residents. 

In my congressional district the staff at Children's Specialized Hospital 

in Mountainside, New Jersey under the leadership of my friend Amy 

Mansue do an outstanding job caring for children and training a highly 

qualified, effective medical staff 

There is strong bipartisan and bicameral support for the Children's 

Hospitals Graduate Medical Education program. And nowhere is this 

more evident than on the House Energy and Commerce Committee 

where my fellow colleagues are working across party lines in support of 

the Children's Hospitals Graduate Medical Education Program. 

Today's legislation under discussion to reauthorize the CHGME 

program will help pediatric training programs by maintaining and 

strengthening existing hospital graduate medical education programs. 

While I recognize that Congress faces many difficult funding decisions 

this year I believe the Children's Hospital Graduate Medical Education 
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75755.030

program is a critical investment in our country's medical future and to 

ensure that children will have continuing access to the care they need 

across provider settings. 

I also would like to take a moment and applaud the committee for 

considering legislation concerning autism. 

Autism is the fastest-growing developmental disability with nearly 1.5 

million Americans living with an autism spectrum disorder. 

Autism spectrum disorders cost nearly $60 billion a year and it is 

estimated that in 10 years the annual cost could be as high as $200 

billion. 

In 2007, New Jersey had the highest prevalence rate of the 14 states that 

were part of the federally sponsored Autism and Developmental 

Disabilities Monitoring Network. 

The Combating Autism Act created vital programs to research autism 

and provide education, early detection and intervention programs. 

I look forward to hearing from the witnesses on ways we can work 

together to improve these important programs. 
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Statement of Rep. Henry A. Waxman 

Ranking Member 

Committee on Energy and Commeree 

Subcommittee on Health Legislative Hearing 

"Miscellaneous Public Health Legislatiou" 

July 11,2011 

Thank you. Mr. Chairman, for holding today's hearing on two important pieces of 

public health legislation H.R. 1822, the Children's Hospital Graduate Medical 

Education Support Act and H.R. 2005, the Combating Autism Reauthorization Act. 

J am pleased that we have come together on a bi-partisan basis to move forward 

with these bills and want to thank the Chair and members on both sides of the aisle for 

working in concert to make that happcn. 

This bi-partisan approach has been the foundation upon which each of the original 

programs addressed in thesc bills was established. 

Created in 1999 in response to the significant decline in pediatricians across the 

country, the Children's Hospital GME Program provides ongoing and consistent financial 

support for thc training of physicians who want to specialize in pediatrics. Over the years, 

the program has been enormously successful in reversing this trend; indeed. today 

children's hospitals supported by the program train 40% of all pediatricians and 43% of 

all pediatric specialists. 

The focus on training of pediatric specialists is especially critical because experts 

report that we need more of them. They have recommended, for example, expansions of 

graduate medical cducation for pediatrics by as much as 75% for pediatric 

rheumatologists. 

Like the Children's Hospital GME Program, the Affordable Care Act's new loan 

repayment program for pediatric subspecialists is designed to help meet these kinds of 

needs. I would hope that both of these programs receive the level of funding support they 

require. 
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Unfortunately, the President's budget for Fiscal Year 2012 eliminates completely 

funding for the Children's Hospital GME Program. I believe this position is ill advised 

and short sighted and should not stand. Nonetheless, it is important that we enact the 

Pitts-Pallone Children's Hospital GME reauthorization bill not only to ensure that the 

program remains in place, but also to send a strong message about the need to fully fund 

it. 

That is the same bi-partisan message we send in taking up H.R. 2005, 

Congressmen Doyle's and Chris Smith's bill to reauthorize the Combating Autism Act. 

Origins of this Act go back to 2000 with the rising concern about the increased 

prevalence of autism. That concern continues today with CDC now estimating that the 

autism spectrum affects onc in every 110 American children, and one of every 70 boys. 

The Combating Autism Act encompasses a number of different programs 

research at NIH, surveillance and epidemiological research at CDC; regional centers of 

excellence on autism spectrum disorders and other developmental disabilities; and 

various public education efforts. All have made significant contributions in the nation's 

effort to better understand and address this very difficult diagnosis. All remain critically 

important to advance the cause. And all are reauthorized in H.R. 2005. 

I look forward to working with my colleagues in moving forward with both of 

these important pieces of legislation. We begin that process today with this hearing. 

I want to thank our witnesses for appearing before the Subcommittee and look 

forward as well to their testimony. 

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Statement from Representative John D. Dingell 

House Committee on Energy and Commerce 

Subcommittee on Health 

"Legislative Hearing on Miscellaneous Public Health Legislation" 

II 2011 

Mr. Chainnan, thank you for holding today's hearing. 

Since I was elected to the U.S. House of Representatives, I have always strived to ensure that our 

nation's children the future of our country - have access to high-quality, effective medical 

care. The two pieces of legislation before us today have made enormous strides towards meeting 

this goal, which is why I am pleased to voice my support for H.R. 1852 and H.R. 2005. 

J supported the creation ofthe Children's Hospital Graduate Medical Education (GME) program 

in 1999 not only because of the significant contribution it made to our national health care 

workforce, but more importantly it represented a historic investment in the health of our nation's 

children. This program has enjoyed broad bipartisan support over the years, and I am proud to 

join with my colleagues Health Subcommittee Chairman Pitts and Health Subcommittee 

Ranking Member Pallone as a cosponsor ofH.R. ] 852. the Children's Hospital GME 

Reauthorization Act of 20 1 I. 

The Children's Hospital GME program has proven to be extremely successful given that its 

recipient hospitals make up only one percent of all hospitals, but train 40 percent of all 

pediatricians and 43 percent of all pediatric specialists. In addition, its funding has enabled 

children's teaching hospitals to reverse a 13 percent decline in pediatric residencies that occurred 

prior to the program's enactment and enabled these teaching hospitals to expand their programs 

by 35 percent in response to local, state and national needs 

Earlier this year, the Administration proposed eliminating the program. I strongly oppose this 

proposal. Eliminating this program would have a drastic negative impact on access to primary 

care, and would yield a devastating blow for our children and their vital access to specialty care. 

While I appreciate the difficult decisions the Administration has to make, I do not believe cutting 

funding for a successful program that has largely met the goals laid out for it makes fiscal sense. 

I hope my colleagues will agree with me and join me in supporting the reauthorization of this 

critical program. 

I also want to voice my strong support for the Combating Autism Reauthorization Act or H.R. 

2005. Autism affects I in 110 children and I in every 70 boys nationwide. Through the 

Combating Autism Act, Congress and the federal government have focused our efforts to 

provide increased research and services to address this disorder. The costs of Autism Spectrum 

Disorder to affected families, people, and society are enormous. The cost to society is currently 

estimated to be $35 - $90 billion annually. Although research and services for Autism Spectrum 

Disorder have expanded in recent years, more must be done to help families facing this 

challenge. 
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I am honored to host two world class autism centers in my district: the Autism and 

Communications Disorder Center at the University of Michigan and the Autism Collaborative 

Center at Eastern Michigan University. While the University of Michigan Center is scheduled to 

close this fall, the Autism Collaborative at EMU will continue and will luckily fill that void. The 

EMU Autism Collaborative offers diagnostic assessments, services, and training at a greatly 

reduced price to families. These services are essential for these individuals and families who 

cannot afford them on their own. 

Reauthorization of the Combating Autism Act will further encourage the federal government to 

work with educational institutions and private organizations to identify and develop early 

diagnostic tests, as well as encourage development of new etTective treatments for people with 

autism and their families. If we are to continue the momentum of the research being done at 

NIH, CDC and HRSA, as well as to continue to improve the quality oflife for individuals with 

autism and their families, then we must reauthorize this critical program. J urge my colleagues 

support for H.R. 2005. 

As I have said before, children are 25 percent oflhe population in our country, but they are 100 

percent of the future. I will continue to lend my support to programs that are dedicated to 

providing and improving the quality of health care our nation's children need and deserve, and I 

hope that this Committee will join me. Together we can continue to advance such measures 

together on a bipmtisan basis. 

2 
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75755.035

FRED UPTON, MICHIGAN 

CHAIRMAN 

Dr. Thomas R. Inse! 

Director 

ONE HUNDRED TWELFTH CONGRESS 

HENRY A. WAXMAN, CALIFORNIA 

RANKING MEMBER 

(:ongtt~~ of tUt 1tnittb ~tatt~ 

~OU£lt of laepre£lcutatibc£l 

COMMITTEE ON ENERGY AND COMMERCE 

2125 RAYBURN HOUSE OFFICE BUILDING 

WASHINGTON, DC 20515--£115 

July 27,2011 

Nationallnstitnte of Mental Health 

National Institutes of Health 

6001 Executive Boulevard, Room 8235 

Bethesda, MD 20892 

Dear Dr. Insel: 

Thank you for appearing before the Subcommittee on Health on Monday, July 11,2011, to 

testify at the hearing on public health legislation. 

Pursuant to the Rules of the Committee on Energy and Commerce, the hearing record remains 

open for 10 business days to permit Members to submit additional questions to witnesses, which are 

attached. The format of your responses to these questions should be as follows: (1) the name of the 

Member whose question you are addressing, (2) the complete text of the question you are addressing in 

bold, and then (3) your answer to that question in plain text. 

To facilitate the printing of the hearing record, please e-mail your responses, in Word format, to 

the Legislative Clerk (katie.novaria@mail.house.gov) by the close of business on Wednesday, August 

10,2011. 

Thank you again for your time and effort preparing and delivering testimony before the 

Subcommittee. 

""~& ~hR.Pitts Chairman 

Subcommittee on Health 

cc: Congressman Frank Pallone, Ranking Member, Subcommittee on Health 
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75755.036

Questions for the Record 

Hearing: The Combating Autism Act (Miscellaneous Health Legislation) 

U.S. House of Representatives Energy and Commerce Subcommittee on Health, July 11,2011 

The Honorable Michael Burgess 

1) The research on autism conducted in the Autism Centers of Excellencc has been 

described by some as "redundant" and too focused on gene and diagnosis research -

and not on, for example, autoimmune prohlems. In addition, there is concern that 

administrative costs are too high and take funds away from research. Would you 

comment on these criticisms? 

The research that the NIH supports through the Autism Centers of Excellence (ACE) program 

spans a wide variety of medical and behavioral science disciplines as called for in the Combating 

Autism Act of 2006 (PL 109-416). In addition to studying the genetic risk factors that may 

contribute to autism spectrum disorder (ASD) and ways to improve methods for reliable and 

accurate diagnosis, the II ACE centers and networks also conduct research on how brain 

development and function is affected by ASD, the role of potential environmental risk factors for 

ASD, development of critically-needed social and behavioral treatments for children and adults 

on the autism spectrum, and identifying effective drug therapies to ameliorate behavioral and 

physical symptoms associated with ASD. 

For example, in the etTort to identi(y potential environmental causes of ASD, three primary 

objectives of the Early Autism Risk Longitudinal Investigation (EARLl) network at Drexel 

University are to: a) determine whether indicators of a mother's immune function, measured 

during pregnancy, at delivery, and six months post-partum, are associated with risk for 

developing ASD, b) investigate whether exposure of mothers during pregnancy to persistent 

organic pollutants is associated with autism risk, and c) explore possible maternal and child 

epigenetic changes (modifications to molecules that bind DNA and alter gene expression) as 

predictors of ASD risk. 

In the area of treatment, ACE projccts are developing and testing interventions targeted to inJants 

and toddlers. For example, an ACE research project at the University of California, Davis MIND 

Institute is conducting a randomized control trial of an early intensive behavioral intervention 

known as the Early Start Denver Model (ESDM). building on the results of an earlier successful 

trial. The new study will involve over 100 toddlers from three different sites and will evaluate 

the efficacy of the intervention for improving child outcomes after 12 and 24 months of 

treatment. 

Autism is a complex and multidimensional neurodevelopmental disorder that affects all aspects 

ofan individual's life. In recognition of this, the ACE programs are tackling this disorder using a 

wide array of approaches from a number of different medical disciplines. Each center fosters 

sharing of knowledge and information among its researchers so that different approaches can 

inforn1 one another, resulting in synergy and development of multifaceted solutions to this 

complex disorder. For example, the ACE center at the University of Illinois at Chicago focuses 

1 
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on the study of "insistence on sameness" (a core behavior in autism) from genetic, 

neurobiological, cognitive neuroscience, and pharmacological approaches. UCLA's center 

focuses on the core communication deficits in ASD by studying the relationship between the 

variability of language and genetic factors and conducting a communication intervention. And 

the UNC Chapel Hill ACE program, which focuses on longitudinal studies of brain enlargement 

in young infants, also received co-funding from Autism Speaks and the Simons foundation to 

collect DNA and data on environmental exposures. The next planned phase of the ACE research 

initiative will be guided by the latest version of the IACC Strategic Plan for ASD Research, 

which itself reflects the multifaceted approaches needed to study and treat autism spectrum 

disorders. 

With respect to the questions regarding administrative costs of the ACEs. the indirect cost rate 

for each grantee institution is set through a negotiation between the Department of Health and 

Human Services and the grantee institution, and once negotiated, the same rate applies to all 

federal grants at that institution. Thus, the indirect cost for each ACE award is precisely the 

same as the rate negotiated for all other federal research grants at that grantee institution. These 

rates vary across institutions and cover items such as facilities operation and maintenance costs, 

depreciation and administrative costs that are required in order for an institution to operate and 

support the conduct of research. 

2) Can you provide budget information on the Autism Centers of Excellence, especially 

related to overhead and indirect costs'? 

Please see attached spreadsheet with direct, indirect and total costs for each NIH Autism Center 

of Excellence from 2008-2010. 

The Honorable Bill Cassidy 

1) Please provide me with the following data requests for all of the disorders included in 

the Autism Spectrum Disorder: 

a. The total number of individuals living with each disorder 

Providing a preeise accounting of the total number of individuals living with ASD 

is not possible at this time for several reasons. First, CDC's Autism and 

Developmental Disabilities Monitoring (ADDM) Network monitors the 

prevalence of ASDs among eight-year-old children in various geographic regions 

across the United States. Studies have focused on eight-year-olds as this has been 

determined to be the age at which the most children have been identified and 

represents the peak prevalence estimate. Providing an estimate of all individuals 

living with ASDs would require CDC to monitor the prevalence in all age groups 

including adults. The ADDM Network, to date. has monitored the conditions only 

in children. There are currently no U.S. prevalence estimates for adult 

popUlations. 

2 
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Sccond, the ADDM Network repOlts prevalcnce estimates for all ASDs 

collectively, not by subtype. Roughly 2/3 to 3/4 of children identified with ASDs 

by the ADDM Network have a specific subtype diagnosed, therefore prevalence 

estimates based on subtypes would be understated. However, ADDM data 

suggest that approximately 10% of children with ASDs have Asperger's 

syndrome. 

To address this question using ADDM data, we must extrapolate from the current 

estimate and assume unvarying prevalence in the current popUlation of individuals 

ages 0 to 21. This yields an estimated 730,000 individuals between the ages of 0 

to 21 with ASDs. This extrapolated estimate is based on the average ASD 

prevalence from all sites in the ADDM Network 2006 surveillance year, reporting 

I in 110 8-year-old children with an ASD (CDC, 20(9). The ADDM Network 

identified a significant increase in ASD prevalence from 2002 to 2006 (57%) and 

will be publishing its next prevalence repOlt for 2008 within the next 6 months. 

When these ncw data are published CDC will reassess the relevancy of this 

extrapolated estimatc. 

h. The cost of a treatment intervention for each disorder 

Children and adults with ASD receive a variety of interventions based on the 

severity of the disorder in each individual and factors such as availability and 

acccss to interventions and individnal or parent/caregiver preference. These 

interventions can include Applied Behavioral Analysis (ABA) therapy, other 

behavioral interventions, speech and language therapy, occupational therapy, 

educational interventions, medications and alternative and complementary 

interventions. According to a study by Washington University social work 

researcher, Dr. Paul Shattuck. a tull-time ABA intervention, which may be used 

by families of children with severe ASD, can cost families an estimated $41,295 

per year (Shattuck et aI., 2(09). This is a simplified estimate only taking into 

account one category oftherapy. Actual costs for any given family can vary 

widely, however, depending on the interventions used. 

According to Harvard School of Public Health professor, Dr. Michael Ganz, the 

lifetime per capita incremental societal cost of autism is $3.2 million. This 

estimatc includes both direct (medical and nonmedical) and indirect costs. Direct 

medical costs typically includc physician and otber professional services, hospital 

and emergency department scrvices, drugs, equipment and othcr supplies, and the 

cost of medically related travel and time. Special education, transportation, child 

care, respite care, out-of-home placement, home and vehicle modifications, and 

supported employment services are generally included as direct nonmedical costs. 

Indirect costs meaSllre the value of]ost or impaired work time (income.), benefits, 

and household services of individuals with autism and their caregivers because of 

missed time at work, reduced work hours, switching to a lower-paying but more 

l1exible job, or leaving the workforce. For autism, the indirect costs of lost 

productivity and adult carc (not direct medical costs) were found to be the largest 

3 
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cost components. Expenses vary across the lifespan depending on the severity of 

ASD and the services needed, with direct medical costs highest between ages 3-7 

and indirect costs peaking at ages 23·27, when there is a high amount of lost 

productivity for people with autism (Ganz 2007). 

c. The number and percentage of individuals that currently benefit from a 

treatment intervention 

Your answer should include a definition of benefit. Variations in benefit 

ranging from total resolution to marginal improvement and all categories in 

between should be distinguished in your answer. 

No peer reviewed data are available on the number of individuals with ASD 

nationwide receiving various interventions and the effectiveness of each 

intervention andlor combination of interventions in the population. As described 

above, any given individual with autism may be receiving one or more 

interventions such as Applied Behavioral Analysis (ABA) therapy, other 

behavioral interventions, speech and language therapy, occupational therapy, 

educational interventions, medications and altemative and complementary 

interventions. Interventions received may depend on availability, access, and 

individual/parental caregiver preference. Clinical trials are being conducted on 

specific interventions, and their results are measured according to standards used 

in thc field, but the research does not generally measure or gauge individual 

outcomes on the basis of a range from "marginal improvement to total 

resolution." Efficacy (benefit) is usually measured based on improvement in 

specific skills or behaviors as measured by standardized assessment tools or by 

measures designed for the specific study conducted. 

The following recent research results reflect current knowledge about efficacy of 

behavioral interventions. For each, a brief description of the results is provided, 

along with references to the original research articles, where detailed information 

about the measures of efficacy and the tools used for assessment can be found. 

• A recent study by NIH Autism Center of Excellence researcher, Dr. Sally Rogers, 

has shov'm significant positive efTects in toddlers of an intervention called the 

Early Start Denver Model (ESDM), which is a relationship-based approach that 

draws on clcments of Applied Behavior Analysis (ABA), a style of therapy that 

emphasizes breaking activities into small, measurable units that are then 

reinforced with reward. In this randomized, controllcd intervention trial of 48 

childrcn diagnosed with ASD bctwcen 18 and 30 months of age, the cognitivc 

ability oflhe ESDM group on average improved 17.6 standard score points (l 

standard deviation ~ 15 points) compared with 7.0 points in the comparison gmup 

relative to baseline scores after 2 years of intervention. The children in the ESDM 

group also showed continued growth in adaptive behaviors (e.g., brushing teeth, 

getting dressed, eating with utensils, etc.), while the children in the control group 

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fell further behind their typically developing peers. Notably, 7 of the 24 children 

in the Early Start Denver Model group had significant enough improvements to 

change from a diagnosis of autistic disorder to PDD-NOS, a milder fom1 of ASD. 

Only one of the children in the control group had a change in diagnosis (Dawson 

et aI., 2010). The significant cognitive gains and change in diagnosis from a more 

severe form of ASD to a milder form are the measureahle benetlts of this 

intervention. 

• NIH-supported researcher, Dr. Rebecca Landa of the Kennedy Krieger Institute, 

conducted a randomized clinical trial in toddlers with ASD that introduced a 

curriculum focused on social engagement and joint attention skills as an addition 

to an ongoing comprehensive behavioral intervention. Joint attention refers to the 

development of specific skills that involve sharing attention with others through 

pointing, showing, and coordinating looks between objects and people; this skill 

is impaired in children with ASD. Fifty cbildren participated and were 

randomized to treatment Goint attention intervention plus standard treatment) and 

control (standard treatment only) groups. Cbildren in both groups made 

improvements in social, cognitive and language skills during the six-month 

intervention period. Children wbo received the social intervention made greater 

and more rapid gains than those in the control group. Tbe researchers also noted 

that children in the social intervention group used their newly acquired abilities 

with different people, locations, and type of activity. This is noteworthy because 

children with ASD have particular difficulty doing so. Tbey tend to use new skills 

mostly witbin familiar routines and situations. The additional curriculum (which 

incurred no additional treatment cost to provide) more than doubled (17% to 42%) 

the amount of imitated acts paired with eye contact in the experimental group 

(Landa et aI., 2011). 

• A randomized, controlled trial of an intervention to improve joint attention in 

toddlers, conducted by NIH-supported researcher Dr. Connie Kasari, bas also 

been successful, suggesting that short-term interventions administered by parents 

wbo have received training in the intcrvention's mcthods can have important 

efIects on core impairments in toddlers with autism (Kasari et aI., 2010). For 

children with autism, both joint attention skills and sustained joint engagement are 

signiticantly impaired. Results of this study of 38 children with autism and 19 

controls and their parents/caregivers showed statistically significant gains for the 

intervention group engaged in joint engagement (as opposed to object-focused 

play) tban the control group as measured by counts of instances of joint attention 

during targeted mother-child play interactions during the study, according to the 

specifications of the study design. 

• A national survey of parents and guardians of young adults with autism spectrum 

disorders (aged 19-23 years) was analyzed to compare rates of service use during 

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and after high school (Shattuck et aI., 2011). Services examined included mental 

health services, medical evaluation and assessment, speech therapy, and case 

management. Seventy-five percent of parents surveyed indicated that their child 

received speech therapy during high school. However, this dropped to only 9% in 

the post-high school years. The rate of young adults receiving medical evaluation 

and assessment services dropped from 47% to 24%, those using mental health 

services decreased from 46% to 35%, and recipients of case management services 

declined from 64% to 42%. While this study provides some clues regarding the 

percentage ofpeop\e with ASDs that benefit from treatment interventions and 

services (based on a sample of 410 individuals), it also points to the great need for 

transition services for young adults with ASD. In the survey, 39% of respondents 

reported that their child received no services following high school. The study 

also indicated that individuals with higher functional mental skills were more 

likely to receive no services and less likely to receive case management or 

medical services, indicating that less cost for their care would be incurred over 

their lifetime. In this survey, about 23% of participants were categorized as 

having high functioning mental skills. 

The Honorable Mike Doyle 

1) During the hearing, Dr. Insel testified that funding for all of the programs under the 

Combating Autism Act are authorized to continue with or without reauthorization 

except the lACe. I have heard since from key stakeholders that continuing many of 

the activities would he extremely difficult without the specific authorization from 

Congress to do so. Could you please clarify what you think the impacts of not 

reauthorizing the CAA would have on the programs and activities authorized under 

the law and provide information on the obstacles that the various participating 

federal agencies would experience in continuing to implement the activities 

cnrrently authorized under the law? 

Reauthorization of the CAA would enable currently authorized programs to continue 

uninterrupted. As the Secretary remarked on April 25. 2011 in her statement for Autism 

Awareness Day, she and the President fully support reauthorizing the Combating Autism Act this 

year because there is still "important work to do - more research to carry out, more treatment to 

develop and refine, and more tools to give doctors and nurses so they can get even better at 

diagnosing autism early." 

To clarify previous testimony, at least one activity could not continue without reauthorization 

due to the sunset provisions in the CAA. Without reauthorization, the Interagency Autism 

Coordinating Committee (IACC) will sunset on September 30, 2011 and its role in coordinating 

agency efforts and providing a torum for public participation will ceasc. The CAA' s 

authorization of the IACC has provided a framework to coordinate federal eftorts, promote 

public-private partnerships, and spur rapid progress in autism research over the past five years. 

Without the IACC, this progress may be slowed or hampered. 

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Also scheduled to sunset on September 30, 2011 are the Health Resources and Services 

Administration's (HRSA) autism education and early detection and intervention activities. 

Without reauthorization of the CAA, HRSA would have to terminate grants for training 

programs, intervention research, and State demonstration grrults. HRSA might be able to fund 

these activities through a different authority, but this approach would require significant 

administrative work and burden, including on the part of existing grantees, that could cause 

interruption to current activities absent reauthorization. To fund these activities through a 

different mechanism could require some ongoing programs to be reduced. 

The CAA has served to ensure that autism programs are prioritized and implemented in a 

coordinated manner across the federal agencies, with collaboration from private partners in many 

cases, and with the input and pruiicipation of the public. This coordination and collaboration has 

accelerated the pace of autism research over the past five years, resulting in gains in knowledge 

about the disorder and new possibilities for early diagnosis and treatment. The administration 

believes that reauthorization of the CAA is critical to maintaining continuity and would provide 

an important opportunity to continue building on the momentum of progress. 

The FY 2012 President's Budget includes language that would allow HRSA's activities under 

the Act to continue into FY 2012 absent a reauthorization. 

References 

Brugha TS, McManus S, Bankart J, Scott F, Purdon S, Smith J, Bebbington P, Jenkins R, 

Meltzer H. Epidemiology of autism spectrum disorders in adults in the community in England. 

Arch Gen Psychiatry. 2011 May;68(5):459-65. PMID: 21536975 

Centers for Disease Control and Prevention (CDC); Autism and Developmental Disabilities 

Monitoring Network Surveillance Year 2006 Principal Investigators. Prevalence of autism 

spectrum disorders - Autism and Developmental Disabilities Monitoring Network, United States, 

2006. MMWR Surveil! Summ. 2009 Dec 18;58(10):1-20. PMID: 20023608 

Dawson G, Rogers S, Munson J, Smith M, Winter J, Greenson J, Donaldson A, Varley J. 

Randomized, controlled trial of an intervention for toddlers with autism: the Early Start Denver 

Model. Pediatrics. 2010 Jan;125( 1):eI7-23. PMID: 19948568 

Ganz ML. The lifetime distribution of the incremental societal costs of autism. Arch Pediatr 

Adolesc Med 2007 Apr;161(4):343-9. [PMID: 17404130] 

Kasari C, Gulsrud AC, Wong C, Kwon S, Locke J. Randomized controlled caregiver mediated 

joint engagement intervention t(lr toddlers with autism. J Autism Dev Disord. 20 I 0 

Sep;40(9): 1 045-1 056. PMID:20145986 

Kim YS, Leventhal BL, Koh YJ, Fombonne E, Laska E, Lim EC, Cheon KA, Kim SJ, Kim YK, 

Lee H, Song DH, GrinkerRR. Prevalence of Autism Spectrum Disorders in a Total Population 

Sample. Am J Psychiatry. 2011 May 9. [Epub ahead of print] PMID: 21558103 

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Landa R.I, Holman KC, O'Neill AB, Stuart EA, Intervention targeting development of socially 

synchronous engagement in toddlers with autism spectrum disorder: a randomized controlled 

triaU Child Psychol Psychiatry. 2011 Jan;52(l): 13-21. PMID: 21126245 

Shattuck PT, Grosse S, Pm'ish S, Bier D. Utilization of Medicaid-funded intervention for 

children with autism. Psychiatr Servo 2009 Apr;60(4):549-52. PMID:09339334 

Shattuck PT, Wagner M, Narendorf S, Sterzing P, Hensley M. Post-high school service use 

among young adults with an autism spectrum disorder. Arch Pediatr Adolesc Med. 201 I 

Feb:165(2):141-146. PMrD 21300654 

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Autism Centers of Excellence - Priodpallnvestigators 

Grant # first last Insit/tution 

I-PSO-HD05S748-01 Nancy Minshew University of Pittsburgh I-PSO-HD05S751-01 Edwin Cook University of !l!inois, Chicago I-P50-HD05S782-01 Bryan I-PSO-HD055784-01 Susan I-P50-MH08175S-01 Eric I-P50-MH081756-01 fred 

ACE Networks Principal Investigators 

Grant 1# First last Insititution 

l-R01·ES016443-01 Newschaffer 

l-R01-H005S741-01 Piven l-ROI-MH0817$4-01 Geschwind l-ROI-MH081757-01 l-U01-NS061264·01 Chugani 

RfA H006-01G 

Project Title 

Biological and Information Processing 

Sameness in Autism 

UW Autism Center of Excellence 

Determinants of Social, Communicative, and 

Other Core Deficits in Autism 

Biomarkers of Autism at 12 Months: From Brain Overgrowth to Genes 

Mechanisms of Social Engagement in ASD 

RFA HD06·Q04 

project Title 

Early Autism Risk Longitudinal Investigation 

(EARll) Network 

FY08 

Direct Costs 

indirect 

FY09 fYIO 

Indirect Tota! Cost J Direct Costs 

Costs 

Total Cost j Direct Costs 

Indirect 

$589,522 

$739,653