[House Hearing, 110 Congress]
[From the U.S. Government Publishing Office]






                 DEPARTMENTS OF LABOR, HEALTH AND HUMAN
               SERVICES, EDUCATION, AND RELATED AGENCIES
                        APPROPRIATIONS FOR 2009

_______________________________________________________________________

                                HEARINGS

                                BEFORE A

                           SUBCOMMITTEE OF THE

                       COMMITTEE ON APPROPRIATIONS

                         HOUSE OF REPRESENTATIVES

                       ONE HUNDRED TENTH CONGRESS

                             SECOND SESSION
                                ________

  SUBCOMMITTEE ON THE DEPARTMENTS OF LABOR, HEALTH AND HUMAN SERVICES, 

                    EDUCATION, AND RELATED AGENCIES

                   DAVID R. OBEY, Wisconsin, Chairman

NITA M. LOWEY, New York             JAMES T. WALSH, New York
ROSA L. DeLAURO, Connecticut        RALPH REGULA, Ohio
JESSE L. JACKSON, Jr., Illinois     JOHN E. PETERSON, Pennsylvania
PATRICK J. KENNEDY, Rhode Island    DAVE WELDON, Florida
LUCILLE ROYBAL-ALLARD, California   MICHAEL K. SIMPSON, Idaho
BARBARA LEE, California             DENNIS R. REHBERG, Montana
TOM UDALL, New Mexico               
MICHAEL HONDA, California           
BETTY McCOLLUM, Minnesota           
TIM RYAN, Ohio                      


 NOTE: Under Committee Rules, Mr. Obey, as Chairman of the Full 
Committee, and Mr. Lewis, as Ranking Minority Member of the Full 
Committee, are authorized to sit as Members of all Subcommittees.

                Cheryl Smith, Sue Quantius, Nicole Kunko,
           Teri Bergman, Charmaine Mercer, and Andria Oliver,
                           Subcommittee Staff
                                ________

                                 PART 7

         STATEMENTS OF INTERESTED INDIVIDUALS AND ORGANIZATIONS

                                ________

         Printed for the use of the Committee on Appropriations

                                 Part 7







      DEPARTMENTS OF LABOR, HEALTH AND HUMAN SERVICES, EDUCATION,
              AND RELATED AGENCIES APPROPRIATIONS FOR 2009
                 DEPARTMENTS OF LABOR, HEALTH AND HUMAN
               SERVICES, EDUCATION, AND RELATED AGENCIES

                        APPROPRIATIONS FOR 2009

_______________________________________________________________________

                                HEARINGS

                                BEFORE A

                           SUBCOMMITTEE OF THE

                       COMMITTEE ON APPROPRIATIONS

                         HOUSE OF REPRESENTATIVES

                       ONE HUNDRED TENTH CONGRESS
                             SECOND SESSION
                                ________
  SUBCOMMITTEE ON THE DEPARTMENTS OF LABOR, HEALTH AND HUMAN SERVICES, 
                    EDUCATION, AND RELATED AGENCIES
                   DAVID R. OBEY, Wisconsin, Chairman

NITA M. LOWEY, New York             JAMES T. WALSH, New York
ROSA L. DeLAURO, Connecticut        RALPH REGULA, Ohio
JESSE L. JACKSON, Jr., Illinois     JOHN E. PETERSON, Pennsylvania
PATRICK J. KENNEDY, Rhode Island    DAVE WELDON, Florida
LUCILLE ROYBAL-ALLARD, California   MICHAEL K. SIMPSON, Idaho
BARBARA LEE, California             DENNIS R. REHBERG, Montana
TOM UDALL, New Mexico               
MICHAEL HONDA, California           
BETTY McCOLLUM, Minnesota           
TIM RYAN, Ohio                      


 NOTE: Under Committee Rules, Mr. Obey, as Chairman of the Full 
Committee, and Mr. Lewis, as Ranking Minority Member of the Full 
Committee, are authorized to sit as Members of all Subcommittees.
                Cheryl Smith, Sue Quantius, Nicole Kunko,
           Teri Bergman, Charmaine Mercer, and Andria Oliver,
                           Subcommittee Staff
                                ________

                                 PART 7

         STATEMENTS OF INTERESTED INDIVIDUALS AND ORGANIZATIONS

                                ________

         Printed for the use of the Committee on Appropriations
                                ________

                     U.S. GOVERNMENT PRINTING OFFICE

 43-329                     WASHINGTON : 2008



















                                  COMMITTEE ON APPROPRIATIONS

                   DAVID R. OBEY, Wisconsin, Chairman


JOHN P. MURTHA, Pennsylvania             JERRY LEWIS, California
NORMAN D. DICKS, Washington              C. W. BILL YOUNG, Florida
ALAN B. MOLLOHAN, West Virginia          RALPH REGULA, Ohio
MARCY KAPTUR, Ohio                       HAROLD ROGERS, Kentucky
PETER J. VISCLOSKY, Indiana              FRANK R. WOLF, Virginia   
NITA M. LOWEY, New York                  JAMES T. WALSH, New York     
JOSE E. SERRANO, New York                DAVID L. HOBSON, Ohio 
ROSA L. DeLAURO, Connecticut             JOE KNOLLENBERG, Michigan    
JAMES P. MORAN, Virginia                 JACK KINGSTON, Georgia 
JOHN W. OLVER, Massachusetts             RODNEY P. FRELINGHUYSEN, New Jersey        
ED PASTOR, Arizona                       TODD TIAHRT, Kansas   
DAVID E. PRICE, North Carolina           ZACH WAMP, Tennessee            
CHET EDWARDS, Texas                      TOM LATHAM, Iowa
ROBERT E. ``BUD'' CRAMER, Jr., Alabama   ROBERT B. ADERHOLT, Alabama        
PATRICK J. KENNEDY, Rhode Island         JO ANN EMERSON, Missouri       
MAURICE D. HINCHEY, New York             KAY GRANGER, Texas      
LUCILLE ROYBAL-ALLARD, California        JOHN E. PETERSON, Pennsylvania           
SAM FARR, California                     VIRGIL H. GOODE, Jr., Virginia             
JESSE L. JACKSON, Jr., Illinois          RAY LaHOOD, Illinois                   
CAROLYN C. KILPATRICK, Michigan          DAVE WELDON, Florida      
ALLEN BOYD, Florida                      MICHAEL K. SIMPSON, Idaho
CHAKA FATTAH, Pennsylvania               JOHN ABNEY CULBERSON, Texas        
STEVEN R. ROTHMAN, New Jersey            MARK STEVEN KIRK, Illinois       
SANFORD D. BISHOP, Jr., Georgia          ANDER CRENSHAW, Florida            
MARION BERRY, Arkansas                   DENNIS R. REHBERG, Montana 
BARBARA LEE, California                  JOHN R. CARTER, Texas       
TOM UDALL, New Mexico                    RODNEY ALEXANDER, Louisiana        
ADAM SCHIFF, California                  KEN CALVERT, California    
MICHAEL HONDA, California                JO BONNER, Alabama       
BETTY McCOLLUM, Minnesota
STEVE ISRAEL, New York
TIM RYAN, Ohio
C.A. ``DUTCH'' RUPPERSBERGER, Maryland
BEN CHANDLER, Kentucky
DEBBIE WASSERMAN SCHULTZ, Florida
CIRO RODRIGUEZ, Texas              

                  Rob Nabors, Clerk and Staff Director

                                  (ii)

 
DEPARTMENTS OF LABOR, HEALTH AND HUMAN SERVICES, EDUCATION, AND RELATED 
                    AGENCIES APPROPRIATIONS FOR 2009

                              ----------                              


         TESTIMONY OF INTERESTED INDIVIDUALS AND ORGANIZATIONS

                              ----------                              

                                          Thursday, March 13, 2008.

  FISCAL YEAR 2009 FUNDING FOR THE INDEPENDENT LIVING PROGRAM OF THE 
       REHABILITATION ACT OF 1973, AS AMENDED (TITLE VII, PART C)

                                WITNESS

KELLY BUCKLAND, EXECUTIVE DIRECTOR, IDAHO STATE INDEPENDENT LIVING 
    COUNCIL, BOISE, IDAHO, NATIONAL COUNCIL ON INDEPENDENT LIVING, 
    DEPARTMENT OF HEALTH AND HUMAN SERVICES
    Mr. Obey. Well, good morning, everyone. Let me go over a 
few things before we get started. First of all, please do not 
be surprised by the fact that we do not have more members of 
the Subcommittee here. As you can see, there is a Congressional 
ceremony going on in the Rotunda honoring U.S. military, and a 
number of members are over there. We had a choice of delaying 
this session or keeping it on schedule, and out of courtesy to 
the witnesses who have come from out of town, we thought it 
best to proceed with the original schedule.
    Secondly, please do not take any lack of comment from 
members of the Subcommittee as being a lack of interest. We are 
simply trying to keep the schedule on time, also taking into 
account that in this puzzle factory votes occur from time to 
time on the House floor that blow away any chance of having an 
orderly hearing. So we like to try to get a little bit ahead of 
the clock so that, if that occurs, we do not wind up 
discombobulating everybody at the end of the process.
    So we will try to restrain ourselves on this side of the 
table as much as possible and let you do the talking today, and 
we will, I hope, be thinking while you are talking.
    Mr. Walsh, do you have any comments before we proceed?
    Mr. Walsh. Mr. Chairman, I absolutely agree with everything 
you said. [Laughter.]
    Mr. Obey. How about Mr. Simpson?
    Mr. Simpson. I do not have anything. I agree with 
everything also.
    Mr. Obey. Okay, then, our first witness, National Council 
on Independent Living, Kelly Buckland.
    Mr. Buckland. Good morning, Mr. Chairman, members of the 
Committee, Representative Simpson. It is good to see you. My 
name is Kelly Buckland. I am honored to appear before you today 
to ask you to consider reaffirming your commitment to Americans 
with disabilities by increasing funding for Centers for 
Independent Living by $100,000,000. As the President of the 
National Council on Independent Living (NCIL) and as a person 
with a disability, I am dedicated to increasing the 
availability of the extremely cost-effective services that 
centers provide.
    NCIL is the oldest cross-disability, national grassroots 
organization run by and for people with disabilities. NCIL 
envisions a world in which people with disabilities are valued 
equally and participate fully.
    Centers for Independent Living are non-residential, 
community-based, non-profit organizations in all but five 
Congressional districts that are designed and operated by 
individuals with disabilities. They provide four core services: 
Advocacy, information referral, peer support, and independent 
living skills training. CILs are unique in that they operate in 
according to a strict philosophy of consumer control in which 
people with disabilities of any age directly govern and staff 
the Center. Each of the 336 federally funded Centers are unique 
because they reflect the interest of their individual 
communities.
    During fiscal years 2004 through 2006, Centers for 
Independent Living provided independent living services to over 
3 million individuals with disabilities and moved 8,381 people 
out of nursing homes and other institutions. Beyond the direct 
services that they provide, Centers seek ways to broadly change 
traditional service delivery in their communities and 
throughout the Nation, including reform of the long-term care 
system.
    For over 30 years, Centers for Independent Living have 
sought community-based programs to assist people with 
disabilities. When services are delivered in an individual's 
home, rather than a costly nursing facility or other 
institution, the result is tremendous cost savings to Medicaid 
and Medicare, while enabling people with disabilities to become 
independent, financially self-sufficient, and less reliant upon 
long-term government supports.
    Indeed, Mr. Chairman, research conducted in your home State 
of Wisconsin found that community-based services are at least 
21 percent less expensive than nursing home placements. The 
success in Wisconsin reflects the system's change activities 
that Centers for Independent Living are struggling to perform 
on their meager budgets. Such initiatives, if replicated 
nationwide through increased funding of the Independent Living 
program, will assist people to regain the right to live, work, 
and participate independently in society.
    NCIL estimates that to meet the current demand and overcome 
three years of funding cuts, appropriations for Independent 
Living will need to be increased by $100,000,000. Increased 
funding should be reinvested from the $160,000,000 that Centers 
have saved the Federal Government over the last three years by 
moving people with disabilities out of costly nursing homes and 
other institutions.
    Supporting Centers in their mission to reintegrate people 
with disabilities into their communities is both morally sound 
and financially expedient. Vesting in Centers for Independent 
Living makes sense. In 2008, Centers are able to attract an 
additional $267,000,000 through grants, contracts, State funds, 
and a variety of other creative funding sources. In other 
words, we make the taxpayers' money work for you and work for 
our consumers.
    Current funding levels barely sustain the day-to-day 
operations. Without increased funds, our vision to achieve full 
integration of people with disabilities into society will be 
undercut and taxpayers will continue to pay for costly nursing 
homes and bear the economic impact of continued dependence.
    Centers for Independent Living are an excellent service and 
a bargain for America. They help keep people active, engaged in 
their communities, and they save the taxpayer money. Funding 
Centers for Independent Living makes sense, common sense, and 
dollars and cents.
    Mr. Chairman, thank you again for this opportunity, and 
members of the Subcommittee, thank you. We will follow up with 
each of you and invite you to visit a Center for Independent 
Living so that you can see firsthand their contributions to 
your Congressional district.
    [The information follows:]


    [GRAPHICS NOT AVAILABLE IN TIFF FORMAT]


    
    Mr. Obey. Thank you very much.
    And let me apologize, because I forgot to do one other 
thing in setting the context for the testimony today. I want 
everyone to understand that I think virtually every member of 
this Subcommittee, on both sides of the aisle, will be very 
sympathetic to most of the causes that we hear addressed today. 
We have one specific problem: the appropriation bills that were 
signed last year by the President were some $22,000,000,000 
below the level that this Committee eventually produced because 
the White House refused to budge on its overall funding levels 
for appropriation bills.
    This year, just to stay at the level of funding that was 
provided by those bills last year, we will have to add back 
roughly $26,000,000,000 that the President's budget cuts from a 
variety of domestic programs. That makes it very difficult to 
be responsive sufficiently to the many good causes we will hear 
about today, and I just want people to be aware of what the 
root of the problem is as we address these issues.
    But thank you. It is good to see you again. I appreciate 
your coming.
    Mr. Buckland. It is good to see you again, Mr. Chairman. 
Thank you.
    Mr. Obey. If any member of the Committee has any comments 
or any questions at any time, please, just volunteer.
    Mr. Simpson. Well, Mr. Chairman, I just want to thank Kelly 
for coming out. I have known Kelly since, what, legislative 
days, years ago, it seems like.
    But thank you for taking the time to come out and testify. 
We appreciate it very much.
    Mr. Buckland. Thank you, Representative Simpson. It is good 
to see you again.
                              ----------                              

                                          Thursday, March 13, 2008.

      FISCAL YEAR 2009 FUNDING FOR OCCUPATIONAL SAFETY AND HEALTH 
 ADMINISTRATION, EMPLOYMENT AND TRAINING ADMINISTRATION, AND OFFICE OF 
                       LABOR MANAGEMENT STANDARDS


                                WITNESS

ARLENE HOLT BAKER, EXECUTIVE VICE PRESIDENT, AMERICAN FEDERATION OF 
    LABOR-CONGRESS OF INDUSTRIAL ORGANIZATIONS (AFL-CIO)
    Mr. Obey. And now American Federation of Labor and Congress 
of Industrial Organizations, or, as people know it, AFL-CIO, 
Arlene Holt Baker.
    Ms. Baker. Good morning, Mr. Chairman and members of the 
Committee. I would like to thank you for this opportunity to 
testify this morning. My name is Arlene Holt Baker. I am the 
Executive Vice President of the AFL-CIO. The AFL-CIO is a 
federation that represents 56 affiliates and 10.5 million 
working families in all sectors in the United States economy.
    On behalf of the AFL-CIO, I thank you for the difficult 
work you do. The scarce resources over which this Subcommittee 
has jurisdiction cannot meet all the needs our Country faces. 
For the sake of time, I am limiting my testimony to some of the 
most pressing priorities of the AFL-CIO; however, we will 
continue to engage the Appropriations Committee throughout the 
remainder of this Congress on a full range of funding issues.
    President Bush's eighth and final budget to Congress 
overwhelmingly ignores the needs and priorities of working 
families. The Bush fiscal year 2009 budget preserves expensive 
tax cuts for the wealthy and dramatically boosts military 
spending, while cutting crucial programs for the most 
vulnerable Americans: Children, the elderly, the poor, and the 
sick. The President continues to propose major cuts in domestic 
appropriations and entitlements over the next five years, 
starting with $23,000,000,000 in fiscal year 2009, totaling a 
massive $474,000,000,000 in cuts over five years.
    Even though unemployment is on the rise and our economy is 
in serious distress, the President's budget contains over 
$1,000,000,000 for cuts for job training and employment 
security programs. Under this proposal, job training programs 
for dislocated workers, young people, Native Americans, migrant 
and seasonal farm workers will all suffer major cuts, along 
with a program that enables low-income senior citizens to work 
with community-based organizations in neighborhoods across the 
Country.
    Although the President has proposed some reforms and a 
modest increase in funding the Trade Adjustment Assistance 
program, his reforms and his budget request fall far short of 
the essential improvements in the TAA bill already approved by 
a bipartisan majority in the House of Representatives, a bill 
he has irresponsibly vowed to veto.
    This Bush Administration budget continues to underfund many 
basic, important programs that have been enacted over decades 
to protect America's workers from abusive employer practices. 
Yet, at the same time, the Bush Administration continues to 
seek even further increases in funding for offices of the Labor 
Department that have been politicized and that have 
institutionalized the harassment of union activists who are 
engaged in their fundamental and legal right to belong to a 
union and participate in the lawful exercise of that right.
    In particular, the Department should be halted from moving 
forward with the implementation of the intrusive 9-page 
disclosure form, the LM-30, which would provide an extreme and 
unfair burden on rank and file union members who perform 
representational tasks such as resolving shop floor disputes or 
conducting safety inspections.
    With this budget, the President has also turned his back on 
the brave men and women who responded to the devastating 
September the 11th attacks at the World Trade Center. These 
workers desperately need medical care, but the President's 
budget will slash funding for the World Trade Center Medical 
Screening and treatment program by 77 percent, from 
$108,000,000 to just $25,000,000.
    And the President's budget puts other workers at greater 
risk. Funding for the research agency, the National Institute 
for Occupational Safety and Health, will be cut 10 percent. At 
the Department of Labor, a small increase in funding has been 
requested for the Federal enforcement program for the 
Occupational Safety and Health Administration, but the worker 
safety and health training program will be eliminated under the 
budget. And the budget proposes to reduce funding for coal mine 
safety enforcement and for the development of new mine safety 
standards at a time when coal mine catastrophes continue, and 
when the Mine Safety and Health Administration is already 
failing to meet the legal deadlines for issuing new protective 
standards.
    Although 47 million Americans lack health insurance and 
millions more need coverage and struggle every day with rising 
costs----
    I see, Mr. Chairman, that the light is on. I will stop at 
this point and you can read the rest of it in the written 
testimony. We thank you for this opportunity to testify before 
the Committee.
    [The information follows:]

    [GRAPHICS NOT AVAILABLE IN TIFF FORMAT]

    
    Mr. Obey. Thank you very much. Appreciate your coming.
    Ms. Jackson Lee.
    Ms. Jackson Lee. Good morning. Good to see you.
    Ms. Baker. Good morning.
    Ms. Jackson Lee. Let me just ask you about the LM-30 
disclosure form. Can you explain what it would take or what at 
least the AFL-CIO believes it would take to get rid of this 
form? Because I agree with you.
    Ms. Baker. Well, our concern is that, as you know, the form 
before was basically a two-page form. This has increased to a 
nine-page form, and our rank and file members, who are 
basically shop stewards now, if they are participating in 
handling grievances on a shop floor and it goes over more than 
250 hours a year, they now have to file a form and they also 
have to include personal financial information to show that 
there is no conflict of interest with banks that possibly their 
unions are doing business with.
    This certainly is not something a shop steward would do, 
and it would have such a chilling impact on shop stewards, and 
it would prevent them from doing their job. So we really think 
it should be rolled back to what was previously in place. This 
really is not necessary; it is burdensome.
    Mr. Obey. Thank you very much.
                              ----------                              --
--------

                                          Thursday, March 13, 2008.

                     IMPACT AID TRANSITION PROGRAM


                                WITNESS

JONATHAN HAKE, CMSGT (RET.), DIRECTOR, MILITARY AND GOVERNMENT 
    RELATIONS, AIR FORCE SERGEANTS ASSOCIATION
    Mr. Obey. Next, Air Force Sergeants Association.
    Is it Jonathan Hake?
    Sergeant Hake. Hake, yes, sir.
    Mr. Obey. Thanks for coming.
    Sergeant Hake. Good morning, Mr. Chairman and distinguished 
Committee members. On behalf of the 125,000 members of the Air 
Force Sergeants Association, I thank you for this opportunity.
    There are countless programs and their associated 
requirements before you, as you mentioned earlier, limited 
resources. We also realize that you are trusted to budget 
wisely, and the decisions you make are based on many factors, 
but I will confine my remarks to just two areas this morning. 
These are Impact Aid and tuition assistance.
    The first is Impact Aid. The program is essential to the 
quality of life of airmen that have school aged children from 
kindergarten to twelfth grade. Like many Americans, these 
service members want the best for their children. They want 
them to succeed. And a key element to that is a quality 
education.
    Public schools surrounding military installations and 
serving large service member populations often struggle because 
of local tax revenue shortfalls. Some school districts have 
noted that and increased taxes in their local areas. We think 
that is unfair to those residing around the installations and 
to those constituents. Some have even suggested we pay 
enrollment fees for public schools, or some service members 
believe sending their children to a private school is the only 
option. Both of those options are expensive and enlisted 
members are at the low end of this pay scale.
    I see my time is up.
    Mr. Obey. No, no, no, ignore that. She was just setting it 
and I think hit the wrong button, so ignore that.
    Sergeant Hake. I am sorry.
    Both options are costly, and enlisted members, as you know, 
are at the low end of the pay scale, so these are not good 
options.
    Housing privatization is also something that Congress has 
done tremendous strides to get improvements of the quality of 
the housing for those that serve, but those may not always be 
considered Federal property. And if they are not Federal 
property, the difference in compensation and Impact Aid goes 
from $2,000 a child to $400 a child, which is a significant 
difference and would be devastating.
    As remarkable as it may seem, as you mentioned earlier, the 
current Administration has projected a budget $1,000,000 below 
what Congress appropriated last year. We find this very 
disappointing. We would ask the Committee to again this year 
take action in funding Impact Aid in 2009 at the level which 
you did in 2008.
    The second area I would like to highlight quickly is 
Transition Assistance Programs. The National Defense 
Authorization Act of 1991 and associated public law established 
this program to help military members transition after their 
tour of duty. Transition Assistance Program employment 
workshops, VA Benefits Briefings, and the Disabled Transition 
Assistance Program provide valuable job placement assistance, 
training opportunities, and it really just helps those members 
of our society be better prepared for the challenges ahead.
    In the fiscal year 2009 budget request for the Department 
of Labor, the Administrator highlighted helping veterans 
transition as a priority, and yet only requested $5,000,000 
more. We think, with the sustained high operations tempo, 
retaining soldiers, sailors, airmen, and Marines, will become a 
challenge, as it has been in the past, and the demand for these 
programs will grow. We urge this Committee to fully fund the 
requested increase and would welcome additional resources to 
meet the need.
    I will close by thanking you again, Mr. Chairman, for this 
opportunity to share our perspective. We appreciate the 
difficult choices this Committee must make and hope the 
information we have provided is helpful. Thank you. This 
concludes my statement.
    [The information follows:]

    [GRAPHICS NOT AVAILABLE IN TIFF FORMAT]

    
    Mr. Obey. Thanks for your time.
                              ----------                              --
--------

                                          Thursday, March 13, 2008.

    ELEMENTARY AND SECONDARY SCHOOL COUNSELING PROGRAM GRANT (ESSCP)


                               WITNESSES

CAROLINE WILLIAMS, CURRICULUM SPECIALIST, MILWAUKEE PUBLIC SCHOOL 
    DISTRICT, MILWAUKEE, WISCONSIN, AMERICAN SCHOOL COUNSELOR 
    ASSOCIATION (ASCA)
JANET L. MAYS, SCHOOL COUNSELOR, OLIVER WENDELL HOLMES K-8 SCHOOL, 
    MILWAUKEE PUBLIC SCHOOL DISTRICT, MILWAUKEE, WISCONSIN
    Mr. Obey. Next we have American School Counselor 
Association, Caroline Williams. Good morning.
    Ms. Williams.  Thank you for giving us the opportunity to 
speak with you today. My name is Caroline Williams, and I am 
pleased to represent the American School Counseling Association 
and the 100,000 school counselors across the Country. I am the 
School Counseling Curriculum Specialist for Milwaukee public 
schools and my district received an Elementary and Secondary 
School Counseling Program grant in 2006. With this funding, we 
hired additional school counselors who are currently 
implementing research-based programs under a Comprehensive 
School Counseling Model.
    Some demographic risk indicators I would like to share. 
Milwaukee public schools is the largest school district in 
Wisconsin. It serves 87,360 students in 207 schools. Milwaukee 
public schools has a high student mobility rate and most 
recently has been sanctioned as a district in need of 
improvement. Most students in our district are economically 
disadvantaged; 71 percent qualify for free and/or reduced 
lunch. The homeless population in Milwaukee has increased since 
we received our grant. The total number of families recorded as 
homeless is currently 1,710 and is projected to rise to 2,900 
by the end of the school year. Milwaukee's high crime and 
incarceration rate add to the backdrop of significant 
behavioral risk factors.
    Unfortunately, these problems do not affect all students 
equally. English language learners represent approximately 21.8 
percent of our population. African-American students represent 
57.4 percent of our student enrollment, but they also represent 
71 percent of the homeless population. The suspension rate 
overall is 24 percent. These shocking demographic and 
behavioral risk factors truly represent a district that needs 
the type of discretionary funds provided under the Elementary 
and Secondary School Counseling Program.
    All elementary schools under the Elementary and Secondary 
School Counseling Program grant have insufficient school 
counseling staff. The number of schools without school 
counselors has grown consistently and significantly over the 
past five years. The current counselor to student ratio 
district-wide is one counselor to 987 students, compared with 
the one counselor to 250 student ratio which is recommended by 
the American School Counselor Association and other 
organizations.
    Less than 5 percent of elementary schools have counselors. 
The elementary school counselor to student ratio is one 
counselor to 1,154 students. As a result of the Elementary and 
Secondary School Counseling Program funding, the elementary 
school counselors have been able to significantly increase the 
number of students served. We also have developed two critical 
documents, a district Comprehensive School Counseling Manual 
and a Parent/Student Conferencing Manual, that will be utilized 
by grant counselors. This is only our second year of the grant 
funding, and we have seen some marvelous new services provided 
to families that were left out in the past.
    On behalf of the students and families of Milwaukee public 
schools, I am very thankful for this funding and most 
definitely see the desperate need for its continuance.
    At this time, I would like to introduce Ms. Janet Mays, who 
is one of the counselors working with the grant.
    Ms. Mays. Good morning. I am noticing the time.
    My name is Janet L. Mays, and for the past 10 years I have 
been the school counselor at Oliver Wendell Holmes School. Our 
school is a Title I school of 404 students; 23 percent are 
special education students, 98 percent receive free or reduced 
lunch. We are located in a high poverty neighborhood in an area 
where violence often occurs.
    We are extremely fortunate to have 1.5 school counselors 
now serving in our school as part of the Elementary and 
Secondary School Counseling Program. This reduces our student 
to counselor ratio to 263 to 1, having a tremendous positive 
impact on the lives of the students and their families in a 
variety of ways.
    As we strive to create an environment conducive to 
learning, our students and their families face many adverse 
challenges. For example, in less than one year, we had a second 
grader struck by a day care van and killed in front of the 
school as other children looked on, an eighth grader hit by 
stray bullets in her chest and face, and a sixth grader who saw 
his uncle shot and killed during a drive-by. Less than three 
weeks ago, five students were walking home from our Afterschool 
CLC Learning Program and they were caught in the crossfire 
between two cars on the corner of the playground.
    In each of these cases, students and their families were 
extremely traumatized and received immediate counseling support 
to work through the grief, the school social worker helped in 
assessing available community and family resources, and the 
school psychologist provided the staff with support needed to 
restore a sense of calm and security with students in their 
classrooms. The support staff worked in a seamless integration 
of service delivery to provide the most efficient, effective 
service delivery possible. While we could never have 
anticipated this number of incidents occurring with such 
frequency, our ability to meet this need would have not been 
possible without the assistance of the ESSCP funding.
    But our school is not just about crises. Like all school 
counseling programs, our fundamental goal is to help students 
overcome barriers to learning so they can achieve success in 
school and beyond. A family in our school was left homeless 
when they discovered that the person they were living with was 
selling drugs out of the home. One of the children in this 
family managed to stay on the honor roll while living out of a 
car with her mother and four siblings. The team consisting of a 
school counselor, school social worker, and school psychologist 
made sure that the family had safe housing, food and clothing, 
as well as the mental health and counseling services they 
needed while working with the teachers to identify and 
integrate successful classroom strategies for these students.
    With decreasing amounts of money allocated for schools and 
increasing operational costs, many staff positions are being 
completely eliminated. But for at-risk children and families, 
building trusting, positive relationships are crucial to 
success and can only take place with stable staff.
    A few years ago, one of my students noticed that many of 
his favorite staff members did not return to school in the fall 
year after year. He came to me with tears in his eyes and 
asked, Ms. Mays, are you going to be back in the fall? I calmly 
reassured him that, God willing, I would return. The student is 
now a junior at a top high school, currently on the honor roll 
and working as a counselor at a summer camp. He is doing all of 
this while providing support for his aging grandmother, his 
primary caregiver. For many children and families, the school 
is a sanctuary and the staff is an alternative family, helping 
with even the most basic of needs.
    Funding from this grant has enabled us to implement 
proactive programming such as peaceful conflict resolution, 
problem-solving, manner skills for students. Partnerships have 
made it possible for us to have on-site full-time nursing 
services and annual dental services for students--
    Oh, I am sorry. I see that the time has been cut short. I 
thank you for taking the time and we appreciate everything that 
you do for our students.
    [The information follows:]

    [GRAPHICS NOT AVAILABLE IN TIFF FORMAT]

    
    Mr. Obey. Thank you for coming and thank you for what you 
do.
                              ----------                              --
--------

                                          Thursday, March 13, 2008.

    DEPARTMENT OF EDUCATION 21ST CENTURY COMMUNITY LEARNING CENTERS 
                                PROGRAM


                                WITNESS

PRISCILLA M. LITTLE, ASSOCIATE DIRECTOR, HARVARD FAMILY RESEARCH 
    PROJECT
    Mr. Obey. Next, Afterschool Alliance, Priscilla Little.
    Ms. Argersinger. Good morning. I am Erica Argersinger, the 
Policy Director for the Afterschool Alliance.
    Millions of children benefit from the 21st Century 
Community Learning Centers, and I thank members of the 
Committee and the Chairman for your support in making quality 
afterschool programs available to our children. I am proud to 
introduce Priscilla Little, Associate Director of the Harvard 
Family Research Project, who will discuss the latest research 
on quality afterschool programs.
    Ms. Little. Thank you and thank you for the opportunity to 
provide testimony today on Afterschool and the 21st Century 
Community Learning Centers Program. I have spent the past 10 
years of my work at Harvard University devoted to building the 
knowledge base for Afterschool, compiling literally hundreds of 
research and evaluation studies into a national database and 
helping people understand what they are telling us about 
effective programming and how best to use research for policy 
practice.
    And I want to just tell you a very simple message. 
Afterschool programs are a critical component of children's 
education and development, and, in part thanks to the 21st 
Century Grants Program, we have a good solid evidence base to 
support this claim. The 21st Century Program spawned new money, 
new programs, and new research and evaluation studies. In 
addition to the studies conducted of 21st Century Programs 
directly, many other evaluations that I have tracked, read, and 
written about include programs which receive 21st Century 
funding as one of many blended funding sources they have 
leveraged to support their work.
    Even though the 21st Century Program began in the 20th 
century, it was aptly named as a program that could support the 
development of the skills necessary for young people to support 
America's effort to stay competitive in a 21st century global 
economy. Since its inception 10 years ago, we have learned a 
lot about the enormous potential for afterschool programs to 
support a range of positive learning and developmental 
outcomes, and let me just give you one example from the CS-
funded Study of Promising Afterschool Programs.
    This study included 3,000 students participating in 
Afterschool nationwide, including some funded by 21st Century, 
and found that regular attendance in these afterschool programs 
over a two-year period was significantly associated with gains 
in standardized math test scores and better work habits. In 
addition to academic achievement outcomes, there are a host of 
positive behavioral, prevention, and health outcomes associated 
with participation, and I refer you to my written testimony for 
that information.
    Do all afterschool programs deliver on these outcomes? Of 
course not. First, different programs target different sets of 
skills, and it is not appropriate to think one program can do 
it all. Second, we have learned a lot from the research about 
specific factors that make a big difference in whether or not 
programs can get these outcomes, and these map on to some key 
aspects of 21st Century.
    First, the research we have conducted at Harvard 
underscores a consistent pattern of winners and losers when it 
comes to access to afterschool opportunities, with middle and 
upper income children and youth getting access to and taking 
more advantage of enrichment outside of school. Twenty-first 
Century investments help level the playing field by targeting 
low income, poorly performing schools to ensure that all 
children and youth have access to programs, not just those who 
can afford them.
    Finally, we all know that learning does not stop when the 
school bell rings. Supporting learning throughout the day, 
throughout the year, and throughout a child's life requires 
partnerships, and this is an area where 21st Century Programs 
are particularly strong. The typical 21st Century Program has 
six community partners who contribute to the project by 
providing services and resources not directly funded by the 
program itself. These partners serve to improve quality, help 
engage children and youth throughout the community, and help 
21st Century Programs leverage additional resources for 
sustainability.
    In closing, I want to reiterate that we know a lot about 
what works for children and youth during the afterschool hours 
and underscore the importance of 21st Century Grants Program as 
a core educational and developmental support for our Nation's 
children. I encourage you to use the research to make informed 
decisions about resource allocations and set reasonable 
expectations for participation in 21st Century Programs. Thank 
you very much.
    [The information follows:]

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    Mr. Obey. Thank you.
    I would simply point out that last year this Committee 
added $100,000,000 to the President's Afterschool budget. This 
year he is recommending a cut of $281,000,000 and he is trying 
to turn it into a voucher program. Net result would be about 
one million kids presently on the program could be eliminated.
    Thank you for your testimony.
    Ms. Little. Thank you for that.
                              ----------                              --
--------

                                          Thursday, March 13, 2008.

                      STUDENT FINANCIAL ASSISTANCE


                                WITNESS

EDITH L. BARTLEY, DIRECTOR OF GOVERNMENT AFFAIRS, UNITED NEGRO COLLEGE 
    FUND
    Mr. Obey. Next, United Negro College Fund, Edith Bartley.
    Ms. Bartley. Good morning, Chairman Obey and distinguished 
members of the Subcommittee. I am Edith Bartley, Director of 
Government Affairs for the United Negro College Fund. It is an 
honor and a privilege to appear before you today as you 
consider funding priorities relevant to the fiscal year 2009 
Labor-HHS Education Appropriations.
    On behalf of UNCF and our 39 member institutions, I would 
like to thank you for your steadfast support of the Nation's 
historically black colleges and universities. UNCF's primary 
goal is to increase opportunities for access to higher 
education. During our 64-year existence, UNCF has raised more 
than $2,300,000,000 to support our member institutions. Today, 
UNCF supports more than 64,000 students at over 900 colleges 
and universities across the Nation.
    The Title III-B part of the Higher Education Act, entitled 
Strengthening Black Colleges and Universities, continues to be 
the primary source of institutional assistance for America's 
HBCUs. UNCF hopes this Subcommittee will continue to support 
increases to the current authorization levels.
    During the last session of Congress, your Subcommittee 
supported $170,000,000 in additional Title III-B funding for 
HBCUs under the College Cost Reduction Act. These funds, 
$85,000,000 per year for two years, were a significant lift for 
Congress and, at the same time, a wise investment. The majority 
of HBCU programs were level-funded during the 2008 House and 
Senate appropriations cycle, and the cut across the board left 
many programs funded at 2007 levels.
    The President's fiscal year 2009 budget proposes that 
$85,000,000 of these funds be counted towards his $238,000,000 
level-funded proposal. UNCF urges the Committee to reject 
proposed cuts to HBCUs and push for the maximum funding 
possible.
    The President also proposes only a modest increase in Pell 
Grant funding. Remember, UNCF schools are small. HBCU 
endowments pale in comparison to majority institutions, and 
most students attending HBCUs are first generation college 
students who need the maximum level of scholarships and grants 
available in order to minimize incurring disproportionate 
levels of student loan debt.
    UNCF requests that the members of the Committee push for 
increased appropriations to support increased Pell Grant 
levels. The average tuition at a UNCF member school is $20,657, 
which is, on average, half of the amount of tuition at a 
majority institution. However, roughly 70 percent of students 
at UNCF schools come from families with incomes below $30,000; 
and students at UNCF schools graduate with roughly $17,000 in 
undergraduate student loan debt.
    In addition to student and institutional aid, UNCF urges 
the Committee to support funding for the Digital and Wireless 
Technology Act. This bill, now attached to the House HEA bill, 
will help close the information and technology gap that exists 
between minority-serving institutions and majority schools.
    Finally, please remember HBCUs produce well-rounded, 
globally competitive graduates. In 2003, Xavier University, a 
UNCF school, produced as many successful African-American 
medical school applicants as the University of Maryland, 
Harvard, and Johns Hopkins African-American applicants. HBCUs 
and their graduates hold great significance within American 
history, the future of our Nation, and the African-American in 
particular.
    While many accounts funded within your Subcommittee are of 
great importance to UNCF, we have submitted a chart as part of 
our written testimony outlining our proposed funding levels for 
relevant programs, and we thank you for this opportunity and 
your continued support.
    [The information follows:]

    [GRAPHICS NOT AVAILABLE IN TIFF FORMAT]

    
    Mr. Obey. Thank you. Again, let me point out that last year 
the College Cost Act enacted increases of $255,000,000 more for 
HBCUs. The President proposes to rescind $85,000,000 this year.
    Ms. Bartley. Yes.
    Mr. Obey. Thank you much.
    Ms. Bartley. Thank you.
                              ----------                              

                                          Thursday, March 13, 2008.

                         FUNDING FOR MENTORING


                                WITNESS

MARGO S. PEDROSO, SENIOR VICE PRESIDENT, PUBLIC POLICY, MENTOR/NATIONAL 
    MENTORING PARTNERSHIP
    Mr. Obey. Next, MENTOR/National Mentoring Partnership, 
Margo Pedroso.
    Ms. Pedroso. Mr. Chairman, Ranking Member Walsh, I 
appreciate the opportunity to testify in support of the 
$100,000,000 in Federal funding for youth mentoring. That is 
$50,000,000 each for the Department of Education's Mentoring 
Programs Grants and the Department of Health and Human Services 
Mentoring for Children of Prisoners Program. I am here today on 
behalf of MENTOR/National Mentoring Partnership. We are an 
advocate and a resource for youth mentoring programs around the 
Country and we work with a national network of mentoring 
partnerships about 4100 mentoring programs around the Country.
    Youth mentoring is a simple, yet powerful concept: An adult 
provides guidance, support, and encouragement to help a young 
person achieve success in life. Numerous students document that 
high-quality mentoring results in better attendance at school, 
it lowers dropout rates, and it decreases involvement with 
drugs and violent behaviors. We believe that mentoring is an 
effective strategy that addresses both the academic and non-
academic needs of struggling young people. Further details on 
the outcomes for youth involved in mentoring relationships are 
in my written testimony.
    To get the kind of results I have just touched on, research 
shows that mentoring programs must operate high-quality 
programs following best practices; they must have well-trained 
staff; they must recruit and thoroughly screen and train their 
volunteers; and they must provide ongoing monitoring and 
support for mentoring relationships. When programs follow these 
proven practices, mentoring relationships last longer and are 
closer, and have strong positive impacts on young people.
    These effective practices come at a cost. We find that it 
is about $1,000 to $1,500 per child per year to run an 
effective mentoring relationship. The mentoring field must have 
continued access to Federal funds if we are going to be able to 
serve more children and serve them well. And we do need to 
serve more children. Just 17 percent of the 17.6 million young 
people that could benefit from having a mentor are currently in 
mentoring relationships. Clearly, the demand for mentoring far 
exceeds what mentoring programs are currently able to provide.
    Since fiscal year 2004, Congress has wisely devoted 
approximately $100,000,000 each year to Federal funding, split 
between the two programs I mentioned previously: The Department 
of Education's Mentoring Programs Grants and Health and Human 
Services Mentoring Children of Prisoners Programs. Both of 
these are competitive grant programs that provide funding to 
local organizations to either start mentoring programs or 
expand the ones they already have.
    The President's budget request for fiscal year 2009 
proposes $50,000,000 for the Mentoring Children of Prisoners 
Program, a slight increase from the fiscal year 2008 funding 
level of $48,600,000. We support this request and encourage 
Congress to provide that $50,000,000.
    Unfortunately, the President's proposed budget for fiscal 
year 2009 would eliminate all funding for the Department of 
Education Mentoring Programs Grants. This program was funded at 
$48,500,000 in 2008 and we request that Congress restore the 
traditional level of $50,000,000 to this program.
    The proposed elimination of ED's Mentoring Programs grants 
would have an extremely detrimental impact on mentoring: 164 
grantees from the fiscal year 2007 cohort would lose the final 
year of funding for their three-year grants, likely resulting 
from closure or downsizing of these programs and ending 
hundreds, if not thousands, of mentoring relationships.
    Besides the immediate impact, the elimination of this 
program would mean the end of the only authorized Federal 
program exclusively focused on providing mentors for young 
people at risk of failing academically. In the seven years the 
program has been in existence, 641 grants have been awarded to 
local organizations in every State, including urban, rural, and 
suburban settings. These grants have totaled nearly 
$300,000,000, and we estimate that around 200,000 young people 
have benefitted from mentoring relationships during this 
funding.
    Eliminating this grant program will significantly impact 
the ability of mentoring programs to continue to serve children 
and will ultimately mean fewer children in mentoring 
relationships. We cannot afford to backslide and increase the 
mentoring gap.
    In conclusion, I respectfully request that Congress provide 
$50,000,000 each for Education's Mentoring Programs and HHS's 
Mentoring Children of Prisoners Program. On behalf of the 
thousands of mentoring programs and millions of young people in 
mentoring relationships today, I commend you for your past 
support of this funding and strongly encourage you to continue 
this wise investment in the future of our young people. Thank 
you.
    [The information follows:]

    [GRAPHICS NOT AVAILABLE IN TIFF FORMAT]

    
    Mr. Obey. Thank you very much.
                              ----------                              

                                          Thursday, March 13, 2008.

                              BIOTERRORISM


                                WITNESS

DAVID FLEMING, M.D., DIRECTOR OF PUBLIC HEALTH FOR SEATTLE-KING COUNTY, 
    WASHINGTON, MEMBER, BOARD OF DIRECTORS, TRUST FOR AMERICA'S HEALTH, 
    DEPARTMENT OF HEALTH AND HUMAN SERVICES
    Mr. Obey. Next, Trust for America's Health, David Fleming.
    Dr. Fleming. Mr. Chairman, members of the Committee, good 
morning. I am David Fleming. I am here as a Board Member of 
Trust for America's Health, or TFAH. I am also the Director and 
Health Officer for the Health Department of Seattle-King County 
in the State of Washington. Thank you for the opportunity to be 
here today.
    I have been lucky in my career to work at the local, State, 
national, and international level in public health and to see 
public health practiced from a variety of perspectives. It is 
clear we are facing a time of unprecedented opportunity for 
saving lives, saving money, and improving health in our Nation; 
and that is good news, because Americans deserve a well-
financed, modern, public health system. It is only rational 
that as we worry about rising health care costs and threats 
like pandemic influenza, that resources for public health 
should be on the rise. But we live in irrational times.
    The President's fiscal year 2009 budget is proposing huge 
reductions in public health spending across this Country. The 
CDC's budget would be cut by $433,000,000, continuing an 
alarming, potentially disastrous trend of disinvestment in the 
very programs that are saving lives and reducing health care 
costs. I am asking you not to let this happen.
    As a local health officer, let me give you a report 
directly from the front lines. Federal funding makes a critical 
difference in my community's and every community's ability to 
protect Americans from threats. Dollars you provide will be 
well spent. In fact, I urge you to attach to these resources 
clear accountabilities and deliverables for improving the 
health outcomes in our communities.
    The bottom line is that TFAH supports increased funding for 
a number of critical community-based programs, and I am 
submitting that for the record.
    In my remaining time, let me briefly outline two 
priorities. The first is chronic diseases, which account for 70 
percent of deaths in this Country and almost 75 percent of 
health care spending. Most are preventable; they do not need to 
happen.
    In my community, we have an amazing federally-funded 
program called Steps. Using community outreach and 
mobilization, we are attacking asthma, diabetes, and obesity in 
the poorest parts of my county. In a few short years, the 
proportion of kids buying soda and junk food in schools has 
dropped 50 percent and asthma hospitalizations are dropping at 
10 percent per year.
    Unfortunately, Federal funding for my county's Steps 
program was eliminated in the 2008 budget. Many other Steps 
communities around the Country are now facing the same prospect 
in the 2009 budget. Please restore funding for Steps and other 
critical community-based chronic disease prevention programs.
    My second priority is preparedness. Recently, TFAH released 
its annual Ready or Not report on our Nation's preparedness. 
The good news is we found significant improvement in State 
preparedness over prior years. The bad news is that there are 
many areas, like medical surge capacity, where we are woefully 
unprepared and we have a crisis in the making.
    Funding for the Preparedness Cooperative Agreements to 
States and localities has been drastically cut in recent years 
and the 2009 budget proposes an additional 18 percent 
reduction. This greatly diminished Federal support for all-
hazards approaches to preparedness puts programs that have been 
created and are now working in jeopardy, and puts the health 
and safety of the people in my community at risk. I ask you to 
restore these capacity-building grants to their fiscal year 
2005 level of $919,000,000.
    Mr. Chairman, I appreciate this opportunity to testify 
because every day across this Country dedicated public health 
practitioners save lives, protect our community and our Nation. 
We have got the will; we have got the ability; we have got the 
passion. But we need resources to get this job done and we are 
looking to you for leadership. Thank you.
    [The information follows:]

    [GRAPHICS NOT AVAILABLE IN TIFF FORMAT]

    
    Mr. Obey. Thank you again. Let me simply cite the record. 
The President proposed a $221,000,000 cut in this program last 
year. The omnibus appropriation bill, which we passed, instead 
added $393,000,000 to the President's request for CDC. This 
year, as you say, he has again proposed a $475,000,000 cut.
    Dr. Fleming. Thank you, Mr. Chairman.
    Mr. Obey. Thank you very much. Appreciate your time.
                              ----------                              

                                          Thursday, March 13, 2008.

  CENTERS FOR DISEASE CONTROL AND PREVENTION'S BUDGET FOR FISCAL YEAR 
                                  2009


                                WITNESS

GEORGES C. BENJAMIN, M.D., FACP, FACEP (EMERITUS), EXECUTIVE DIRECTOR 
    OF THE AMERICAN PUBLIC HEALTH ASSOCIATION, WASHINGTON, D.C., 
    CENTERS FOR DISEASE CONTROL AND PREVENTION COALITION, DEPARTMENT OF 
    HEALTH AND HUMAN SERVICES
    Mr. Obey. Centers for Disease Control and Prevention 
Coalition, Dr. Georges Benjamin.
    Dr. Benjamin. Good morning, Mr. Chairman and Ranking Member 
Walsh. My name is Dr. Georges Benjamin, and I am the Executive 
Director of the American Public Health Association. But today I 
am here to speak to you on behalf of the CDC Coalition to 
express our views on the importance of providing adequate 
funding for the Centers for Disease Control and Prevention's 
budget for fiscal year 2009. The CDC Coalition is a group of 
over 100 groups committed to strengthening our Nation's 
prevention programs.
    We, of course, have appreciated the Subcommittee's support 
over the years, and we recognize how real tough it is to find 
money, and even tougher to prioritize spending. But as my good 
friend, David Fleming, just said, obviously, the CDC's Federal 
funding provides the foundation for our core public health 
programs. Over 70 percent of these dollars go directly to 
communities and we believe that the CDC should be supported as 
an agency. So we are recommending an adequate level, at least 
for this year, of $7,400,000,000--which includes funding for 
the Agency for Toxic Substances and Disease Registry as well--
for CDC's core programs; and, of course, that would not include 
the dollars for Vaccines for Children Program.
    The CDC's budget has actually shrunk since 2005, in terms 
of real dollars, by over almost 4 percent, over almost 
$500,000,000. The current Administration request for fiscal 
year 2009 cuts the CDC budget by $475,000,000 below the fiscal 
year 2008 level; increases cuts to State and local preparedness 
funding, as you heard, chronic disease programs, infectious 
disease programs and detection, including things like West Nile 
Virus; and control elimination of Preventive Health Services 
Block Grant. We believe this request is inadequate and, quite 
frankly, many of the cuts appear to be arbitrary in nature.
    Since 2005, these cuts in CDC we think worked in a very 
damaging way to decrease the capacity for the CDC and we just 
think these cuts are going in the wrong direction.
    Just to point out, in California, the REACH Program. I 
mean, a small cut, but $125,000. Over $90,000,000 in the 
Preventive Health Services Block Grant. At least when I was in 
government looking at these kinds of budgets, this basically is 
a budget that has really no policy coherence whatsoever. And we 
hope that, as you are making these very, very difficult 
choices, you will be able to prioritize some funding back to 
the Centers for Disease Control and Prevention.
    With that, I will stop and be happy to take any questions 
you might have.
    [The information follows:]

    [GRAPHICS NOT AVAILABLE IN TIFF FORMAT]

    
    Mr. Obey. Thank you very much.
                              ----------                              

                                          Thursday, March 13, 2008.

  CENTERS FOR DISEASE CONTROL AND PREVENTION'S BUDGET FOR FISCAL YEAR 
                                  2009


                                WITNESS

BRYAN BECKER, M.D., PRESIDENT-ELECT, NATIONAL KIDNEY FOUNDATION (NKF), 
    DEPARTMENT OF HEALTH AND HUMAN SERVICES
    Mr. Obey. Next, National Kidney Foundation, Dr. Bryan 
Becker.
    Dr. Becker. Good morning, Mr. Chairman, members of the 
Subcommittee. I am President-Elect of the National Kidney 
Foundation and today is World Kidney Day. National Kidney 
Foundation patient advocates are visiting many of their 
Congressional delegations discussing chronic kidney disease.
    Twenty-six million Americans have chronic kidney disease 
and the prevalence of chronic kidney disease has gone up 30 
percent over the last two decades in the United States. My 
great State of Wisconsin has enough people with chronic kidney 
disease to fill Lambeau Field, one of our signature landmarks. 
Unfortunately, most of the people with chronic kidney disease 
do not know that they have it.
    The Medicare End Stage Renal Disease Program, a marvelous 
program that treats patients with kidney failure with dialysis 
or transplantation, regardless of age or other disability, is 
the only disease-specific coverage under the program. But we 
are not talking about kidney failure; we are talking about 
chronic kidney disease. We are talking about patients that just 
have a mild degree of kidney dysfunction. And if we look at 
Medicare datasets, this number of individuals accounts for 21 
percent of Medicare expenditures at present.
    Until 2005, there was no national public health program 
addressing early detection and treatment of chronic kidney 
disease. Congress provided $2,000,000 to initiate a chronic 
kidney disease program at the CDC in that year. NKF is 
requesting a very modest $3,000,000 for that program in fiscal 
year 2009. The kidney program will identify high-risk 
individuals, develop community-based systems for improved 
detection and treatment, and disseminate best practices for 
early detection and treatment.
    We know that early detection and appropriate treatment can 
limit chronic kidney disease and limit the number of people who 
develop kidney failure. The CDC has funded the development of 
the CKD surveillance system feasibility study and pilot 
programs and an expert panel which met last March has now laid 
the foundation for a true public health strategy for chronic 
kidney disease, including cooperative agreement with State-
based screening demonstration projects.
    The modest request for additional funding will expand that 
infrastructure and increase the community-based demonstration 
projects, extending them even into CKD monitoring for 
progression of CKD.
    Individuals with diabetes, high blood pressure, 
cardiovascular disease, or a family history of chronic kidney 
disease are all at great risk; and because CKD is asymptomatic 
early, we know detection is critical. The Chronic Kidney 
Disease Program at the CDC will help us improve our early 
diagnosis and enable health care providers to do what is right 
for this large set of patients in our Country.
    Thank you very much for your past support and consideration 
for this request.
    [The information follows:]

    [GRAPHICS NOT AVAILABLE IN TIFF FORMAT]

    
    Mr. Obey. Thank you. Appreciate your time.
                              ----------                              

                                          Thursday, March 13, 2008.

 CENTERS FOR DISEASE CONTROL AND PREVENTION (CDC)--NATIONAL INSTITUTE 
               FOR OCCUPATIONAL SAFETY AND HEALTH (NIOSH)


                                WITNESS

JAMES K. BROWN, M.D., FRIENDS OF NIOSH, DEPARTMENT OF HEALTH AND HUMAN 
    SERVICES
    Mr. Obey. Next, Friends of NIOSH, Dr. James Brown.
    Dr. Brown. Mr. Chairman, thank you for the opportunity to 
present testimony to the Subcommittee in support of funding for 
the National Institute of Occupational Safety and Health. My 
name is Jim Brown. I am Professor of Medicine at UC-San 
Francisco and a staff physician in lung disease at the San 
Francisco VA. I am testifying on behalf of the Friends of 
NIOSH, which is a coalition of business, labor, medical, 
professional, and educational organizations interested in 
helping the Nation reduce work-related illnesses and injury.
    For fiscal year 2009, Friends of NIOSH request a 
$50,000,000 increase for NIOSH. This increase would enable 
NIOSH to keep pace with the changing nature of work-related 
illnesses and ensure that research and education to prevent 
work-related disease and injuries remain a high priority.
    NIOSH is the primary Federal agency responsible for 
conducting research and making recommendations for prevention 
of work-related illnesses and injury. It collects information, 
collaborates with all stakeholders to identify the highest 
priority causes of these work-related problems, conducts 
biomedical research to find solutions, and translates the 
knowledge gained in solutions into products and services that 
improve the safety and health of workers in all sectors of the 
United States economy.
    It supports programs in every State. As part of these State 
activities, NIOSH evaluates workplace hazards and recommends 
solutions when requested by employers, workers, and government 
agencies. It builds State worker safety and health capacity 
through grants and cooperative agreements; it funds 
occupational safety and health research; and it supports 
occupational safety and health training programs.
    The many causes of occupational injury and illness 
represent a striking burden on American health and well-being, 
as reflected by the following observations:
    Each day, an average of 9,000 U.S. workers sustain 
disabling injuries on the job; 16 workers die from injuries 
suffered at work, and 137 workers die from work-related 
illness.
    In 2005, more than 4.2 million workers sustained work-
related injuries and illnesses in the private sector alone.
    These are especially distressing statistics because most 
work-related fatalities, injuries, and illnesses are 
preventable with effective, professionally directed health and 
safety programs.
    Furthermore, we do not work in a static environment. 
Between 2000 and 2015, the number of workers 55 years and older 
will increase by 72 percent, to over 31 million workers. Work-
related injury and fatality rates begin increasing at age 45, 
with rates for workers 65 years and older nearly three times as 
high as the average for all workers.
    We also constantly face new threats to worker health. The 
heightened awareness of terrorist threats, as well as the 
increased responsibilities of first responders and other 
homeland security professionals illustrate the need for 
strengthened workplace health and safety in the ongoing war on 
terror.
    NIOSH developed more effective methods to test for anthrax 
contamination in congressional offices. These procedures were 
quickly adopted by the Coast Guard, FBI, and government 
building contractors.
    In response to ongoing safety concerns regarding the 
tunnels under the U.S. Capitol, NIOSH was asked to evaluate 
health hazards in the tunnels for workers who maintain the 
plumbing that provide steam and water to Congress, Library of 
Congress, Supreme Court, and other Federal buildings.
    NIOSH took a lead role in the safety of 9/11 emergency 
responders in New York City and Virginia, with NIOSH trained 
professionals applying their technical expertise to meet 
immediate protective needs and safeguard the health of cleanup 
workers. NIOSH now administers awards to provide health 
screening of World Trade Center responders.
    Thank you for the opportunity to report the great need for 
research and training in occupational health and safety. Thank 
you.
    [The information follows:]

    [GRAPHICS NOT AVAILABLE IN TIFF FORMAT]

    
    Mr. Obey. Thank you very much.
    Let me just point out last year the President requested 
$252,900,000. This Committee added $21,000,000 to his request. 
This year the President is suggesting a $28,000,000 cut. I have 
to say I am biased; I think that NIOSH is one of those agencies 
squeezed the most.
    I recall, a number of years ago, when I got Dr. Irving 
Selikoff to come to my district to do an epidemiological study 
on behalf of grain workers in one of my major cities because a 
number of them were having severe respiratory problems, and the 
CEO of that grain elevator went ballistic and swore to me that 
there were no problems whatsoever on the floor. Well, I had 
been in that grain elevator; I, myself, had had a severe 
reaction to the grain. So I simply suggested to him that he 
ought to change places with his workers for a week; let them 
sit in his office while he worked on the shop floor; he might 
have a different attitude about the problem.
    NIOSH is crucial to dealing with problems like that. Thank 
you very much.
    Dr. Brown. Thank you, Mr. Chairman.
                              ----------                              

                                          Thursday, March 13, 2008.

  HEALTH RESOURCES AND SERVICES ADMINISTRATION--CHILDREN'S HOSPITALS 
                       GRADUATE MEDICAL EDUCATION


                                WITNESS

JOSEPH WRIGHT, M.D., MPH, EXECUTIVE DIRECTOR, CHILD HEALTH ADVOCACY 
    INSTITUTE, CHILDREN'S NATIONAL MEDICAL CENTER, WASHINGTON, D.C., 
    THE NATIONAL ASSOCIATION OF CHILDREN'S HOSPITALS, ALEXANDRIA, 
    VIRGINIA, DEPARTMENT OF HEALTH AND HUMAN SERVICES
    Mr. Obey. National Association of Children's Hospitals, 
Joseph Wright.
    Dr. Wright. Chairman Obey and Ranking Member Walsh, thank 
you for the opportunity to testify today in support of the 
Children's Hospitals Graduate Medical Education Program. I am 
Dr. Joseph Wright, Executive Director of the Child Health 
Advocacy Institute at Children's National Medical Center here 
in Washington, D.C., and have practiced pediatric emergency 
medicine for 18 years there. I am here today on behalf of the 
National Association of Children's Hospitals and the 60 
independent children's teaching hospitals that qualify for 
CHGME funding, including Children's National Medical Center.
    Congress established the CHGME program in 1999 to address a 
disparity in Federal graduate medical education support that 
existed between adult teaching hospitals and independent 
children's teaching hospitals. Because independent children's 
hospitals treat children and not the elderly, they are largely 
excluded from the predominant payer of graduate medical 
education: Medicare.
    Prior to CHGME, children's teaching hospitals received one-
two hundredth the Federal GME support that adult teaching 
hospitals received. Thanks to this Subcommittee's leadership 
and the broad bipartisan Congressional support, the CHGME 
program currently provides about 80 percent of the GME support 
that Medicare provides to adult teaching hospitals.
    CHGME funding has been absolutely essential to children's 
hospitals and the future of pediatric medicine. Less than one 
percent of all independent teaching hospitals train 35 percent 
of all pediatricians and half of all pediatric subspecialists. 
CHGME hospitals provide half of all hospital care for seriously 
ill children in this Country and serve as the Nation's premier 
pediatric research centers.
    CHGME has been remarkably successful in erasing the decline 
in a number of pediatric residencies that existed prior to its 
enactment. CHGME has enabled children's hospitals to sustain 
and expand residency programs at a time of national pediatric 
workforce shortages.
    Since the program was instituted, CHGME recipient hospitals 
have accounted for more than 67 percent of the growth in the 
number of pediatric subspecialty trainees and 76 percent of the 
growth in the number of all pediatric residents.
    Since fiscal year 2000, the first year that we received 
CHGME support at my hospital, Children's National has 
experienced a 30 percent increase in the number of residents 
and fellows that we train. We have added specialties and now 
operate 17 ACGME accredited programs.
    Now, as you know, with only one exception, in fiscal year 
2005, the President has consistently proposed to cut CHGME 
funding in his annual budget. This year, the President's budget 
proposed the elimination of CHGME. Fortunately, this 
Subcommittee and Congress have consistently sustained the 
program's funding.
    In 2006, Congress reauthorized the CHGME program with 
nearly unanimous approval, providing $330,000,000 in authorized 
funding. Last year, Congress appropriated $301,700,000 for the 
program. In its reauthorization, Congress reinforced the fact 
that CHGME is a targeted, fiscally-responsible, slow-growth 
program.
    In the last five years, CHGME's funding has grown at an 
annual rate of just 0.8 percent, from $290,000,000 in fiscal 
year 2003 to less than $302,000,000 in fiscal year 2008. It 
operates under extensive data reporting requirements, which 
were further strengthened in its reauthorization.
    We deeply appreciate the support this program has received 
from so many members of this Subcommittee. We are grateful for 
the leadership of Chairman Obey and Ranking Member Walsh, and 
former Chairman Ralph Regula and Bill Young. CHGME is not only 
important to the Nation's children's hospitals, it is 
absolutely critical to all children's health and the future of 
pediatric medicine in this Country.
    I ask that you please ensure continuation of the strong 
successful CHGME program that exists today by appropriating the 
fully authorized level of $330,000,000 for CHGME in fiscal year 
2009. Thank you very much.
    [The information follows:]

    [GRAPHICS NOT AVAILABLE IN TIFF FORMAT]

    
    Mr. Obey. Thank you. Again, last year, the President 
proposed a $100,000,000 cut in this program. This Committee 
restored the funds. For the coming year, the President is 
proposing to eliminate the entire $300,000,000 program.
    Thank you much.
                              ----------                              

                                          Thursday, March 13, 2008.

                              RURAL HEALTH


                                WITNESS

PAUL MOORE, PRESIDENT, NATIONAL RURAL HEALTH ASSOCIATION, MOORE, 
    OKLAHOMA, DEPARTMENT OF HEALTH AND HUMAN SERVICES
    Mr. Obey. National Rural Health Association, Paul Moore.
    Mr. Moore. Thank you, Mr. Chairman, Ranking Member Walsh, 
and distinguished members of the Subcommittee. I thank you for 
the opportunity to testify on the rural health safety net that 
is made up of programs in the Labor, Health and Human Services 
Education and Related Agencies appropriations bill.
    My name is Paul Moore, and I serve as the President of the 
National Rural Health Association. We are a national nonprofit 
member-driven organization whose mission is to improve the 
health of rural Americans. I have a long history of working 
with the programs under your jurisdiction in a number of health 
care roles: as a community pharmacist, as a hospital 
administrator, a home health administrator, an EMS 
administrator.
    Mr. Chairman, it will be no surprise to the members of this 
Subcommittee that rural health care providers and their 
communities tend to have fewer patients and also have less 
financial resources than their urban counterparts. It is often 
difficult to invest in the infrastructure, technologies, and 
activities that are needed to improve quality, expand delivery 
of care options, or even to recruit health care professionals.
    Yet, studies show that rural hospitals are leaders in the 
nationwide quality movement. With the right resources, these 
rural hospitals can provide care with even better quality 
outcomes than their urban counterparts.
    Other rural health providers have similar opportunities. 
The rural health safety net programs each have their own 
individual goals and objectives, but, in practice, they work 
together to provide the technical assistance and the resources 
needed by the rural health providers and their communities.
    These programs, which are outlined in my testimony, include 
such Federal initiatives as the Rural Health Outreach and 
Network Grants, the Rural Telehealth Grants, and the Small 
Hospital Improvement Program. These Federal programs and others 
highlighted in my written testimony have worked to provide the 
expertise, assistance, and guidance that we need.
    In regards to training, evidence clearly shows that if you 
provide training to medical students in a rural environment, 
they are likely to practice there. This is the only way we will 
be able to overcome the growing workforce crisis in rural 
America. Already, many rural communities are in a health 
profession shortage area or medically underserved area.
    The long-term projections show that there are more 
retirements of rural health professionals than the number being 
trained to take their places. This calls for a radical 
rethinking of training, of recruitment, and care coordination, 
which is already underway. Programs such as the National Health 
Service Corps, Title VII, Title VIII must be continued and 
strengthened.
    Rural America is not asking for a lot. Our request is 
exceedingly modest. Excluding the community health centers, the 
programs making up the rural health safety net costs 
approximately $300,000,000. This is not enough money to have 
any significant impact on the overall Federal budget deficit or 
the fiscal environment; yet, it will have a huge impact on 
rural America. In the long run, the Federal Government will pay 
a much higher cost should it walk away from its commitment to 
monitor and to improve the health care in rural America.
    Mr. Chairman, it is clear that the rural health safety net 
programs that this Subcommittee oversees work. The evidence 
demonstrates that they improve all facets of the rural delivery 
system. But we must continue to fund and improve the programs. 
Without this, the future of 62 million rural Americans is at 
stake.
    I thank you for the opportunity to present to you today. 
Thank you.
    [The information follows:]

    [GRAPHICS NOT AVAILABLE IN TIFF FORMAT]

    
    Mr. Obey. Thank you. And again let me point out, last year, 
the President proposed a $142,000,000, or 50 percent, cut to 
rural health programs. This Committee restored that funding and 
added $5,000,000 more. Again this year, the President is 
proposing a $112,000,000, or 82 percent, cut in the program.
    Thanks much.
    Mr. Moore. Thank you, Mr. Chairman.
                              ----------                              

                                          Thursday, March 13, 2008.

FISCAL YEAR 2009 APPROPRIATIONS FOR THE NATIONAL INSTITUTE OF DIABETES 
                   AND DIGESTIVE AND KIDNEY DISEASES


                                WITNESS

DEE GAILEY RYAN, NEPHCURE FOUNDATION, DEPARTMENT OF HEALTH AND HUMAN 
    SERVICES
    Mr. Obey. Next, on behalf of NephCure, Dee Gailey Ryan.
    Ms. Ryan. Chairman Obey and members of the Subcommittee, 
thank you for the opportunity to appear before you today. I am 
Dee Ryan, and my husband is Lieutenant Colonel John Kevin Ryan, 
U.S. Air Force and Iraq war veteran. I am here today to tell 
you about our six-year-old daughter Jenna. She is suffering 
from nephrotic syndrome, a medical problem caused by rare 
diseases of the kidney filter, which causes leakage of protein 
into the urine and can often cause kidney failure.
    Our physician tells us Jenna has one of two filter diseases 
called Minimal Change Disease or Focal and Segmental 
Glomerulosclerosis. According to a Harvard University report, 
there are presently 73,000 people in the United States who have 
lost their kidneys as a result of FSGS.
    Unfortunately, the causes of FSGS and other filter diseases 
are very poorly understood. In October of 2007, Jenna began to 
experience general swelling of her body, intermittent abdominal 
pain, fatigue, and general malaise. Then she developed a cough 
and her stomach became dramatically distended. We rushed Jenna 
to the emergency room, where her breathing became more and more 
labored and her pulse raced. She had symptoms of pulmonary 
edema, tachycardia, hypertension, and pneumonia. Her lab 
results showed a large amount of protein in the urine and a low 
concentration of the blood protein albumin, consistent with a 
diagnosis of FSGS. Jenna's condition did not begin to stabilize 
for several frightening days.
    We are frightened by her doctor's warnings that NS and its 
treatment are associated with growth retardation and other 
medical complications, including heart disease. Jenna has 
already developed hypercholesterolemia. This is a lot for a 
little girl in kindergarten to endure.
    Jenna's prognosis is currently unknown because nephrotic 
syndrome can reoccur and NS has been known to commonly reappear 
even after a kidney transplant. Even with a transplant, FSGS 
can dramatically shorten one's life span.
    Accompanying me at today's hearing is Michael Levine. 
Michael's son Matthew is desperately ill with FSGS. Without 
improvements in treatments brought about by additional 
research, Matthew's fate is uncertain. It is more than likely 
that Matthew will require a kidney transplant in the near 
future. And even then there is no guarantee at all that 
transplanted kidneys will reverse Matthew's illness.
    As parents, we are working against the clock to find 
answers to these terrible disorders which seriously debilitate 
our children, tear our families apart, and keep us awake at 
night.
    Mr. Chairman, because the causes of FSGS and nephrotic 
syndrome are poorly understood, I am asking you to please 
significantly increase funding for the National Institutes of 
Health so that treatments can be found for Jenna, Matthew, and 
other people who suffer from FSGS and NS.
    Also, please support the establishment of a collaborative 
research network which would allow scientists to create a 
patient registry and biobank for NS/FSGS and that would allow 
coordinated studies of these deadly diseases for the first 
time.
    Finally, please urge the National Institute of Diabetes and 
Digestive and Kidney Disease to fund more grants on FSGS/NS 
research consistent with its recent program announcement 
entitled Grants for Basic Research in Glomerular Disease.
    Mr. Chairman and members of the Subcommittee, on behalf of 
Jenna, Matthew Levine, and the thousands of people suffering 
from NS and FSGS, thank you for this opportunity. We appreciate 
the opportunity to speak before the Subcommittee and for your 
consideration of our request.
    [The information follows:]

    [GRAPHICS NOT AVAILABLE IN TIFF FORMAT]

    
    Mr. Obey. Thank you very much. Let me first of all say to 
Jenna, you have been a very good girl, very patient. We 
appreciate that.
    I want to thank all of you for sharing your stories with 
us. I know it is not an easy thing to do.
    We are happy to have Congressman Burgess here this morning. 
I understand you were busy in another Committee, but we are 
happy to have you here.
    Mr. Burgess. If I might just----
    Mr. Obey. Sure.
    Mr. Burgess. My relationship with Jenna is----
    Mr. Obey. Would you pass the mic down?
    Mr. Burgess. And I appreciate the indulgence. Six years 
ago, when I was just a regular guy practicing medicine back in 
Texas, I delivered Jenna. She and her mother Dee are up here 
before you this morning to talk about her disease, nephrotic 
syndrome, which struck Jenna about four months ago. I thank the 
family for being here. I thank them for sharing their 
compelling story with you, and I hope the Committee will 
seriously take their recommendations.
    I will not take any more of your time. Thank you.
    Mr. Obey. Thank you.
    I appreciate your coming, again, and I just want to put in 
context the request, because NIH, I think every member of this 
Subcommittee cares deeply about what happens to NIH budget. In 
fact, some of us were out at NIH last Monday for a site visit 
for most of the day.
    Last year, the Administration proposed to cut NIH by 
$475,000,000. The omnibus appropriation bill that we produced 
rejected that cut, adding $613,000,000 to the Administration's 
budget, but the White House vetoed an additional $771,000,000.
    This year, the President has proposed to freeze the NIH 
budget, which would in effect mean about a $1,000,000,000 real 
cut, and we have been told by the chief at NIH, Dr. Zerhouni, 
that it would result in the loss of about 6,000 scientists who 
are presently working on NIH grants.
    So we will do the best we can on this. A lot is going to 
depend on how much funding we are allowed under the budget 
resolution, which is up on the floor today.
    But thank you all. I appreciate your coming and I am sure 
we wish you the very best of luck.
    Mr. Walsh.
    Mr. Walsh. I echo your comments.
    Mr. Obey. Thank you.
    I have been told that we should expect a roll call between 
11:00 and 11:30. It looks we are going to make it before we get 
devoured by one of those.
                                          Thursday, March 13, 2008.

     NATIONAL INSTITUTES OF HEALTH FISCAL YEAR 2009 APPROPRIATIONS


                                WITNESS

ROBERT E. PALAZZO, PH.D., PRESIDENT, FEDERATION OF AMERICAN SOCIETIES 
    FOR EXPERIMENTAL BIOLOGY, BETHESDA, MD, PROVOST, RENSSELAER 
    POLYTECHNIC INSTITUTE, TROY, NY, DEPARTMENT OF HEALTH AND HUMAN 
    SERVICES
    Mr. Obey. Next, the Federation of American Societies for 
Experimental Biology, Dr. Robert Palazzo.
    Mr. Palazzo. Mr. Chairman, thank you for the opportunity to 
testify today.
    Mr. Obey. Sure.
    Mr. Palazzo. It is an honor to come before you representing 
the 21 societies, more than 80,000 biomedical researchers of 
the Federation of American Societies for Experimental Biology. 
My name is Robert Palazzo. I am a Professor of Biology and the 
Provost of Rensselaer Polytechnic Institute, the oldest science 
and technology institute in the United States.
    In the interest of time, I would like to give a brief 
summary of the longer comments that have been submitted for the 
record.
    Although the members of this Committee are well aware, I 
think it bears repeating that the National Institutes of Health 
is the world's premier sponsor of medical research and is the 
Federal agency responsible for conducting and supporting the 
basic and clinical science that drives the development of 
treatments and cures for diseases and injury.
    NIH funds more than 325,000 scientists at more than 3100 
universities and institutions in every State across this 
Country. The researchers receiving NIH funds are united by a 
compelling desire to investigate the underlying biology of 
human disease and use this knowledge to improve our health and 
save lives.
    Chairman Obey, you have asked on a number of occasions, 
``What have we lost by not adequately or fully funding programs 
like the medical research done at the NIH?'' I think this is an 
important question, because it allows us to illustrate the 
sense of urgency felt by those of us who understand the 
critical mission of the NIH: emerging diseases and new health 
threats dominate our headlines, from drug-resistant staph 
infections to avian influenza and autism, all the while our 
aging population, under increasing pressure to meeting the 
challenges of Alzheimer's Disease, osteoporosis, macular 
degeneration, and many others.
    During the next 25 years, the number of Americans with 
chronic diseases is projected to reach 46 million. That is 
roughly one in five Americans. Yet, just as the need to prevent 
diseases becomes greater and the opportunities to succeed 
become more numerous, I fear that our commitment to medical 
research may be dwindling.
    Never before has science been more poised to advance the 
discoveries that will improve our health. Yet, never before 
have we been more in danger of squandering our scientific 
talent and delaying critical breakthroughs. Flat-funding of 
NIH, combined with the effects of inflation, has eroded the 
purchasing power of the agency by more than 10 percent. With 
every excellent idea left unfunded, we stand to miss or delay 
critical discoveries that could lead to therapies for our most 
debilitating health conditions.
    The NIH funding situation threatens to affect an entire 
generation of young scientists. Young scientists watch their 
mentors struggle to maintain grant funding from the NIH and 
question whether they should invest in such a risky, albeit 
noble, career. Many of our best and brightest scientists are 
seeking more promising opportunities outside of the lab or in 
other nations like China or Singapore. All these nations are 
increasing their investment in biomedical research even as we 
are pulling back.
    Importantly, Mr. Chairman, applications for R01 grants from 
previously unfunded scientists seeking their first grant showed 
an appreciable drop in 2007, declining by nearly 600 
applications from the 2006 level. This is a 6 percent to 7 
percent drop in those junior people seeking their first NIH 
grant. This represents the loss of hundreds of scientists and 
all of the talent and intellectual capital that they bring to 
the system. We have moved past the point where scientists are 
spending more time filling out applications doing research, and 
now we are at the point where many may be giving up.
    Congressmen, in closing, I would like to say that, without 
research, there is no hope. It was not long ago that a 
pronouncement of heart disease, AIDS, or breast cancer sounded 
a death knell. These are now treatable conditions and patients 
go on living long, happy lives years after the diagnosis. 
Infectious diseases that haunted our parents and grandparents--
polio, measles, rubella, whooping cough--have been conquered by 
vaccines. Premature infants now survive to bring parents years 
of joy, rather than drawing their last desperate breath in the 
hospital.
    We can help Jenna. We can conquer FSGS and many other 
diseases. The foundation for these cures lies in the NIH; lies 
in the support that this Congress has shown for this agency in 
the last 50 years. That hope is a direct result of your wisdom 
and the support of this House.
    With that, I will simply close. I would be happy to take 
any questions.
    [The information follows:]

    [GRAPHICS NOT AVAILABLE IN TIFF FORMAT]

    
    Mr. Obey. Well, thank you very much. We appreciate your 
time, and I certainly agree with the points that you made.
    We just made it. So let me thank everybody for their 
patience. We will reconvene at 2:00 this afternoon for another 
round. Thank you.
                              ----------                              


                           Afternoon Session

                              ----------                              

                                          Thursday, March 13, 2008.

         TESTIMONY OF INTERESTED INDIVIDUALS AND ORGANIZATIONS

    Mr. Obey. Well, thank you, everyone for coming. This is the 
second panel of public witnesses that we have heard from today. 
In the first hearing, we were very lucky. We were halfway 
through the testimony of the last witness when the bells rang 
for a vote. We are not going to be so lucky this time. We are 
supposed to have a vote in about 15 minutes, and we may have 
more than one.
    But before I ask the witnesses to proceed, let me simply 
try to make a couple points and set the context.
    First of all, as I said in the first hearing, please do not 
take silence on this side of the table as an indication of 
disinterest. We are going to be very squeezed to get all these 
witnesses in, in between roll calls, and so we have had plenty 
of time to talk through the first part of this year. We are 
going to largely listen to you. I may make a comment from time 
to time to put in context what each of the witnesses is saying, 
but outside of that we will try to restrain ourselves.
    Secondly, I want people to understand what the position of 
this Subcommittee is. We do not have authority to put together 
any bill that we want. We have to live within the limits that 
are assigned to us by the budget resolution which is on the 
floor today.
    To put that in context, last year, the President succeeded, 
in his view, in holding the line against our bills which means 
that we wound up putting into law, appropriation bills which 
were approximately $22,000,000,000 below those that the 
Committee reported out initially. The President vetoed the 
flagship domestic bill which is this Labor-Health-Education 
Bill, and that resulted in substantially less funding for this 
bill.
    This year, the President is proposing a budget which, when 
you take into account the various offsets that we used last 
year that would not be available to us this year, what it means 
is that the President is, in essence, cutting the bills that he 
signed last year in terms of the accounts that we provided last 
year by roughly $26,000,000,000.
    The budget resolution today would allow us to restore most 
of those cuts, to fill most of those holes, but the White House 
is making quite clear that they will not sign bills at that 
enhanced level.
    So that is the context in which we have to make decisions, 
and that is the context in which you are testifying today. I do 
not especially like it, but I have a habit of facing reality.
    So, with that, let me simply turn to Mr. Walsh for whatever 
comments he might make before we introduce the witnesses.
    Mr. Walsh. Thank you, Mr. Chairman, and thank you for 
bringing in all these expert witnesses from all around the 
Country.
    This is a very important part of the process because the 
decisions that we make do affect things. This bill especially 
has historically been referred to as the People's Bill because 
there are more things that affect people and our quality of 
life in this bill than any other than the Congress works on.
    All of you are here because you appreciate the fact that 
democracy is not just a spectator sport. You have to roll up 
your sleeves and put on your sneaks or wingtips, whichever, and 
come down and fight for what you believe in. So we appreciate 
your coming here today.
    I agree with the Chairman. I am glad that the Congress has 
the power of the purse. I think we should fight for that power. 
The Constitution gave it to us. It does not belong at the White 
House. It belongs here. I believe that we are closer to the 
people.
    So we will listen to your priorities. We may not be able to 
meet them, but we will listen to them, and we will give you our 
best effort to create a bill that meets the needs of the 
Country.
    Mr. Chairman, with that, I yield back.
    Mr. Obey. All right. I understand you want to introduce our 
first witness.
    Mr. Walsh. If you will, yes. Thank you, Mr. Chairman.
    It is my great pleasure to introduce Dr. Michael Miller 
from the State University of New York, Upstate Medical 
University in my hometown of Syracuse, New York. It is a 
marvelous hospital. It is also a teaching hospital and soon to 
have a children's hospital attached, which we are very excited 
about.
    Dr. Miller is a Professor and Chair of the Neuroscience and 
Physiology Department.
    Dr. Miller, thank you very much for coming today. We 
welcome your testimony.
                              ----------                              

                                          Thursday, March 13, 2008.

                      SUNY UPSTATE MEDICAL CENTER


                                WITNESS

DR. MICHAEL W. MILLER
    Dr. Miller. Well, good afternoon, and it is indeed an honor 
to speak to all of you. I would like to express a special 
appreciation to Mr. Walsh for his decades of service to Upstate 
New York and to our Country and for his inviting me to speak 
today.
    I speak on behalf of my institution, biomedical researchers 
across the Country and for what I believe is the health and 
well being of citizens of the United States.
    Seventy-eight years ago, Congress established the National 
Institutes of Health. It was a bold experiment, and I think we 
can all agree that it was a successful and continues to be a 
successful experiment.
    NIH continues to have a number of successes. It discovers 
new knowledge and treatments that improve the health and save 
lives. It helps drive down the costs of healthcare, and it is 
an engine for economic growth.
    It returns approximately $7 on the investment dollar, and 
it is one of the few areas that I think we can argue where we 
have a leadership role in the world.
    Support for NIH has national impact. It is not just an 
entity that supports just medical schools. The extramural 
programs support the 150, roughly, allopathic and osteopathic 
medical schools, but it is not restricted to these 
institutions.
    It is also supporting activities that are going on at small 
schools like Hamilton College, Clarkson College and small 
places Upstate New York as well as larger institutions such as 
Binghamton University. These are places outside of districts 
that are covered in the areas where there are just the medical 
schools.
    All citizens benefit from NIH research, supported research: 
Improved life expectancy, work efficiency and quality of life 
of the citizens of the United States.
    About 10 years ago, Congress took a bold step and decided 
to double the NIH budget. This was a wonderful opportunity, and 
it was in response to a lot of successful arguments that people 
had made, saying that we would be able to have cures within 
five years for neurodegenerative disease, cancer, diabetes, 
virtually any disease of your choice.
    In essence, we told you what you wanted to hear. It may 
have been done innocently. People genuinely believe that 
because of the molecular biology revolution, that things were 
going to be going much faster.
    But I think that it was naive on the part of scientists and 
on Congress' part, and the claims were foolhardy and 
shortsighted. We could not deliver within five years.
    It takes a considerable amount of time for drug development 
to occur. Just if you have a drug and you want to develop, it 
takes five to seven years just for that process alone, not to 
mention the time it takes to prepare with the basic science 
research that underlays that drug development. So really, from 
beginning to end, from concept to care delivery, it takes about 
20 years.
    It could not be done within five years, and I think that it 
was not a good situation. Basically, Rome was not built in a 
day and what we need to do is to take a longer term view of 
things, and that is what I have come here to try and encourage 
Congress to take that view.
    I just want to give an example of some of the activities 
that I am involved with. I am the head of a new center on 
developmental exposure to alcohol research, and what that is 
involved with is the effects of alcohol on the fetus and on 
adolescents.
    I think that we can all agree that is a major clinical 
issue. In fact, alcohol costs the economy a quarter of a 
trillion dollars a year in all of its ramifications.
    Fetal Alcohol Spectrum Disorder affects 2 percent of all 
children that are born. Adolescent exposure to alcohol, three-
quarters of the adolescent population has reported taking 
alcohol as an adolescent. The cost of just that is 
$58,000,000,000 to the economy. It is not a small activity.
    The problem has been known since the 1970s, Fetal Alcohol 
Spectrum Disorder, but yet it has taken us 30 years to get to a 
point where we now have biomarkers to be able to understand the 
process and are now starting to develop approaches to be able 
to deal with ameliorating the problems. It takes a long time 
for this to happen.
    So what I am asking Congress to do are three things: 
Provide global support for biomedical research; to support 
dependable, reliable growth of the research enterprise; to 
return to the central precept that the original charter of the 
NIH delegation, the original charter which is to delegate and 
to trust NIH to be able to operate. Congress should appropriate 
the funds for NIH and then to let the people at NIH figure out 
the best way to use those funds.
    At the risk of suggesting that the research enterprise is 
the enemy, I would also argue that Congress should trust but 
verify. It should just not hand out the money willy-nilly. They 
also have to take responsibility for making sure that it is 
spent properly. So I think it is a handshaking operation, and 
we need both sides.
    As a final comment, I would just like to say that the 
expectations of immediate returns from investment was not well 
taken on either part of the equation, us as scientists or on 
Congress' side. What we need for the best benefit of everybody 
is a consistent long-term commitment to biomedical research.
    I thank you for your time.
    [The information follows:]

    [GRAPHICS NOT AVAILABLE IN TIFF FORMAT]

    
    Mr. Obey. Thank you for your time.
    Let me simply point out that the President's fiscal year 
2008 budget proposed a $479,000,000 reduction to NIH compared 
to the appropriation level we provided in the fiscal year 2007 
joint resolution.
    The bill the President vetoed provided for an $899,000,000 
increase. The final omnibus bill still provided $133,000,000 
over fiscal year 2007 which was $613,000,000 over the 
President's request.
    The President's fiscal year 2009 budget request fails to 
provide any increase at all for NIH, freezing the NIH budget at 
$29,200,000,000 which, as I indicated this morning, Dr. 
Zerhouni has told us will cost us the services of 6,000 
scientists in the coming year.
    Thank you for coming.
    Dr. Miller. Thank you.
    Mr. Obey. Next, Mr. Terry Peel.
                              ----------                              

                                          Thursday, March 13, 2008.

        BOSTON UNIVERSITY AMYLOID TREATMENT AND RESEARCH PROGRAM


                                WITNESS

TERRY R. PEEL
    Mr. Peel. Some friends have joined me. Is that okay?
    Mr. Obey. Well, I do not mind the two people on the ends, 
but I am concerned about the fellow in the middle. [Laughter.]
    Mr. Peel. I understand this is your last hearing of the 
year and, recalling my prior service up here, this is a great 
day for the members but even a better day for the staff.
    Mr. Chairman, I appreciate the opportunity to appear today 
to talk to you about the rare disease and the troubling disease 
of amyloidosis. Appearing with me today is my wife, Ann, who 
has successfully undergone treatment for this disease.
    This Committee, the House Labor HHS Committee, starting 
with Mr. Regula as Chairman and now continuing with you, Mr. 
Obey as Chairman, has taken steps that have significantly 
changed the knowledge of this disease among the American public 
and also at NIH. We are asking you today to continue your 
efforts in providing report language that encourages NIH and 
the Centers for Disease Control to recognize this disease and 
work on the treatment, the care and prevention.
    Until Ann was diagnosed with this disease, we had never 
heard of amyloidosis, and that is true of most of the American 
public. In fact, most people die of amyloidosis before they 
even know that they have it, and others are diagnosed too late 
to have the treatment.
    The only treatment right now for amyloidosis is stem cell 
transplant and high dose chemotherapy. So, once you are 
diagnosed with this disease, you go through the risk of this 
type of procedure. Left untreated, the life expectancy for 
amyloidosis patients is 15 months.
    Ann has successfully obtained treatment for amyloidosis, 
and she has moved through a life and death struggle. We are now 
devoting our time to use this experience to help others.
    Dr. David Seldin is with us today. He is the Director of 
the Boston University Amyloid Treatment and Research Program, 
and it was Dr. Seldin and his team of professionals that 
actually saved Ann's life.
    Now what is amyloidosis? Amyloidosis is a protein-folding 
disease in which proteins fold and clog up the organs in the 
simple explanation. They will clog up the heart, the kidney, 
the liver to a point where death occurs.
    The treatment, as I have said, there is no cure for it, but 
the treatment is high dose chemotherapy and stem cell 
transplant where the patient's own stem cells are harvested in 
order to recover from the high dose of chemotherapy which 
brings you down to near death.
    What needs to be done about this disease? Only through more 
research is there hope of further increasing the survival rate 
and finding treatments to help more patients. Timely diagnosis 
is also of great concern to us, and early treatment is the key 
to success.
    Without a very sharp doctor here in Washington, identifying 
this disease, I am not sure Ann would be sitting here today.
    Through the leadership of this Committee, there has been 
increased basic and clinical research on amyloidosis. There has 
been increased funding for equipment and research, and the 
National Institutes of Health have now increased their 
involvement and interest in amyloidosis and identified it as a 
rare disease.
    What we are asking for you to do, Mr. Chairman, in the next 
steps is to continue the language that you have had in the 
report over the last several years, to continue to encourage 
the Centers for Disease Control and NIH to educate the American 
public and physicians, to provide funding in 2009 for research 
equipment and, finally, to assure that NIH is following through 
on the recommendations of the Committee.
    Treatment has proven very effective for Ann. We want to 
turn what has been a life-threatening experience for her into 
hope for others.
    Could Ann just say a couple words?
    Ms. Peel. When you have your health, you have everything 
which is one of the most important things I learned during my 
experience. What began as a devastating diagnosis ended in 
treatment, resulting in my remission.
    One of my goals is to allow more people, early diagnosis 
and treatment, so they can lead healthy lives. The actions 
taken by this Committee are helping to do just that.
    Thank you.
    [The information follows:]

    [GRAPHICS NOT AVAILABLE IN TIFF FORMAT]

    
    Mr. Obey. Well, thank you.
    Let me just ask the doctor one quick question. What 
percentage of physicians throughout the Country, do you think, 
are sufficiently aware of the disease and aware of the 
manifestations that would enable them to make a diagnosis?
    Dr. Seldin. I think most physicians are aware, Mr. 
Chairman. I think the internet has made a great difference for 
patients with rare disease and their ability to seek out 
centers for treatment, but it is only through the support of 
the Congress and funding of National Institutes of Health 
research that we can continue to make advances.
    I think there are thousands of people alive today with this 
and other rare diseases because of what you have allowed NIH 
and the biomedical research community to do, millions of people 
living with cancer today, who would not be here without that 
support, and I hope you can continue the momentum to improve 
things for the American people in the future.
    Thank you.
    Mr. Obey. Thank you.
    Next, PKD Foundation, Michael Haggard.
                              ----------                              

                                          Thursday, March 13, 2008.

                             PKD FOUNDATION


                                WITNESS

MICHAEL HAGGARD, BOARD MEMBER, POLYCYSTIC KIDNEY FOUNDATION
    Mr. Haggard. Thank you. Good afternoon, Mr. Chairman and 
members of the Subcommittee.
    My name is Michael Haggard, and I am on the Board of 
Trustees of the Polycystic Kidney Foundation. I am also a 
patient with polycystic kidney disease.
    The disease has run through my family as it does all who 
have PKD for generations. My maternal grandmother died when my 
mother was in college. I never met her.
    My uncle was diagnosed and became a nephrologist to find a 
cure for the disease. He died after receiving a kidney 
transplant from my grandfather, and my mother died of 
polycystic kidney disease three years ago this week.
    I am not here for myself. It is too late for me. I am here 
for Madison and Carson who are my two children, who have a 50 
percent chance of receiving the gene from me and being 
diagnosed with PKD. I am here for all the children who cannot 
control the genes that their parents pass on to them.
    Polycystic kidney disease affects 600,000 Americans, 12.5 
million people across the globe, and it is one of the world's 
most prevalent life-threatening genetic diseases. Put another 
way, there are 1,400 PKD patients in each one of your 
congressional districts.
    The majority of PKD patients will experience kidney 
failure, making dialysis or a kidney transplant the only way 
that they can survive.
    PKD is the number one genetic cause of kidney failure and 
costs the Federal Government $2,000,000,000 annually in the 
Medicare budget. As Congress knows, end-stage renal disease is 
the number one increasing item in Medicare.
    I want to thank this Committee, as previous folks have 
testified, for your commitment to research, to the NIH because 
you have had a dramatic impact. Two years ago, the PKD 
Foundation testified before this Committee, and that was before 
we had 15 clinical trials ongoing right now. This gene was only 
discovered, the gene that causes PKD, 13 years ago. Right now, 
currently we have 17 clinical trials going on.
    The PKD Foundation, which works with the NIH, has developed 
public and private partnerships to develop the research for 
this disease. Congress has responded. This Committee has 
responded with ever more progressive appropriations report 
language for PKD for 18 consecutive years.
    Research in the PKD field is now at the point where we hope 
this Committee will include the proposed fiscal year 2009 
report language which calls for the establishment of PKD 
centers and diagnostic treatment centers. We believe that these 
centers are really the next step in the progression of PKD 
research.
    They would increase the new diagnostic methods to treat 
PKD, the application of new therapeutic regimens, conduct pilot 
studies and these clinical trials, and coordinate all that data 
with the public and private partnerships, and streamline the 
appropriate clinical applications of effective treatments.
    We are pleased to report that Dr. Starr, who gave a speech 
to us last week at our awareness center, said PKD research is 
one of the most prevalent and most exciting research going on 
at the NIDDK and they have approved our report language.
    My time before you obviously is limited and there is an 
incredible group of folks to testify after me and before me. So 
we have submitted the written testimony.
    We realize that it is important for Congress, especially in 
light of everything that the Chairman has talked about with the 
freeze in funding, to see a return on investment. When you look 
at the return on investment in just a short time for PKD 
research, it is really one of those diseases that we are on the 
cusp of making a difference in. It is vitally important that 
this investment go on and we do not lose the scientific 
momentum that we have achieved.
    I do not want to leave behind the legacy for my family and 
generations to become this disease. The blessing and the 
cursing of this disease come in the genetic form, in the gene. 
Every night when I put my two kids to bed, one of the thoughts 
I always have is: Did I pass this disease on to them?
    The blessing of this disease is the genes because the 
scientists, because it is genetic, because of their 
discoveries, feel that they can make the advances and put it 
into clinical trials, which they have done, and get to the 
point where they can slow the progression of this disease.
    Thank you so much for all your efforts in the past, and I 
thank you for my time today. If you have any questions, I will 
be happy to answer them.
    [The information follows:]

    [GRAPHICS NOT AVAILABLE IN TIFF FORMAT]

    
    Mr. Obey. Thank you very much. I appreciate your time.
    Mr. Haggard. Thank you, Mr. Chairman.
    Mr. Obey. Let me say to Committee members, any time you 
want to ask a question, I am going to keep moving through 
witnesses unless somebody pulls my chain and lets me know they 
want to ask a question.
    All right. I understand that the gentlewoman from 
California would like to introduce the next witness.
    Ms. Roybal-Allard. Yes. Thank you, Mr. Chairman.
    Mr. Chairman, I would like to introduce Dr. Randy Pausch 
who will be testifying about the critical importance about 
funding pancreatic cancer research. Dr. Pausch is an award-
winning teacher, researcher and computer scientist at Carnegie 
Mellon University.
    He is, more importantly, a husband, a father of three young 
children and a courageous and outspoken individual who is 
living with pancreatic cancer. In what time he has left, Dr. 
Pausch is trying to make a meaningful contribution to 
pancreatic cancer science.
    Just a couple of days ago, Dr. Pausch was discharged from 
the hospital, and I also understand on his way over here he was 
in an automobile accident. So it has taken him a great deal of 
strength and determination to be here to share his message with 
us today.
    So, thank you, Randy, for your courage and your unselfish 
giving of your precious time to share your story before this 
Subcommittee in hopes of saving the lives of others.
                              ----------                              

                                          Thursday, March 13, 2008.

                    PANCREATIC CANCER ACTION NETWORK


                                WITNESS

DR. RANDY PAUSCH
    Dr. Pausch. Thank you.
    I am here on behalf of the Pancreatic Cancer Action 
Network.
    Pancreatic cancer is a terrible, terrible disease. I became 
sort of an accidental celebrity because after I was diagnosed, 
and I want to be very clear, I am a terminal cancer patient. I 
am not even supposed to be alive today.
    In August, I was given three to six months. I have had a 
very fortunate response to the palliative chemo, but this is 
not going to last too much longer.
    As you said, I was in the hospital last Monday. I was 
diagnosed with congestive heart failure and renal failure. I 
said to the doctors, can I get healthy enough to go to D.C. on 
Thursday?
    We do not have advocates for this disease because they do 
not live long enough. We do not have a Michael J. Fox because 
people die too fast. Pancreatic cancer is absolutely ruthless.
    I became an accidental celebrity because I gave a lecture 
at Carnegie Mellon after I was diagnosed, as an academic 
tradition of the last lecture. Hypothetically, if you were 
going to die, what would you tell your students? I got to do it 
for real.
    I gave a lecture for my children, but I gave it in an 
academic setting. It got loose on YouTube and damned if six 
million people have not watched it.
    But I want you to understand that pancreatic cancer is one 
of those unusual diseases. The statistics are pretty clear. If 
you get it, you are dead within a year with a 75 percent 
chance. When you talk about survival, 4 percent of people make 
it to 5 years.
    When I presented first with symptoms, we thought I had 
hepatitis. When we got the diagnosis, my wife said, gee, I 
guess you would trade for hepatitis.
    I said, honey, I would trade for AIDS in a heartbeat, in a 
flash. I would love to trade for AIDS.
    This Subcommittee is pretty familiar with AIDS. You were 
some of the first funding that was provided. I do not think we 
have beaten AIDS, but I think we have made huge progress 
against the disease that many people thought would be 
impossible.
    Pancreatic cancer right now is the fourth leading killer 
amongst cancers. More interestingly, it is one of the only 
cancers you can point to and say, in the last 30 years, we have 
made no progress. That is terrible.
    There are so many cancers where you can see, particularly 
with childhood cancers, where the 4 percent survival became 90 
percent survival. It makes me feel really good to be an 
American to see the researchers let loose and win like that.
    With pancreatic cancer, I learned a new word, nihilistic. 
It means given up, too hard. I do not believe in too hard.
    I believe that by funding pancreatic cancer research, we 
will be going after the hardest problem, and I am a trained 
researcher. I know that if you go after the hardest problem, 
you cannot go for the halfway solutions.
    I mean not that I am not a fan of chemotherapy and 
radiation, they have kept me alive, but the real answers are 
going to be in genetics and things like pancreatic cancer force 
you into those kinds of solutions because the halfway measures 
just are not good enough against that strong of a disease.
    This is a disease you cannot protect yourself against. I 
never smoked. I never drank. I exercised every day. I tried to 
eat right. It just comes like a thunderbolt out of the blue.
    Part of my job is to put a face on the disease. At the risk 
of being a little bit overly dramatic, I want to show you a 
picture. This is my family.
    This is Dylan. He is six years old. He loves dinosaurs.
    This is Logan. He is four. He is Super Logan. He has a 
cape. He runs around the house, saving everyone.
    This is Chloe. In May, she turns two.
    And, this is my widow. That is not a grammatical 
construction you get to use every day, but it is not many 
diseases where you know it will be fatal.
    I have metastasized to the liver and spleen which means 
that I have 100 percent chance of dying, and there is not 
anybody in the medical community who will not bet that I will 
not be dead by the end of the year.
    This woman is going to raise these three children by 
herself, very bravely, because I will not be there to help her.
    All I can ask today is that everyone keep in their minds 
that pancreatic cancer is a disease that I think we can beat, 
but it is going to take more continued courage and funding from 
our government to help protect us from the things that we 
cannot protect ourselves from.
    Thank you.
    [The information follows:]

    [GRAPHICS NOT AVAILABLE IN TIFF FORMAT]

    
    Mr. Obey. Thank you very much for sharing your story. If I 
may simply say, I am somewhat familiar with the problem because 
my brother-in-law died of pancreatic cancer.
    Dr. Pausch. Sorry to hear that.
    Mr. Obey. He worked for the Department of Transportation in 
State Government in Wisconsin, and he decided to take early 
retirement so he could spend full-time working for Tin Can 
Sailors, an organization that he helped set up after the 
Vietnam War.
    Before he retired, he took one last physical. Expecting no 
problems, he was shocked and his doctor simply said, I have a 
bad surprise for you. He spent the next two years, struggling 
before he was finally overcome by the disease.
    So I know how hard it is, and I think virtually everybody 
on this panel knows someone who has been in a similar 
situation. I simply want to assure you that we will do 
everything we possibly can to try to shape a bill that 
recognizes that it is more important to put funding into 
medical research than it is to put $51,000,000,000 in the 
pockets of millionaires in the form of a tax cut this year.
    I would simply point out again, to put this in context, 
between 2007 and 2006, the number of NIH new and competing 
grants dropped by 891 grants. In 2007, this Committee added 
1,194 grants to the NIH budget, but that change is being eroded 
this year by the loss of some 6,000 scientists that will occur 
if we pass the President's budget.
    So I want to assure you we will do everything we can to try 
to change that picture. I admire your courage, and we all wish 
you very well.
    Anyone else have any other comment?
    Mr. Honda.
    Mr. Honda. You are advocating more research and more study 
among the scientific community and the physicians. Where does 
one start?
    Reading the information here, there does not seem to be a 
starting point. Is there a starting point?
    Are there areas of research that should be looked at but 
are not being looked at, using computer science and the genome? 
Where do you start?
    Dr. Pausch. I think you put your finger on it. The human 
genome is the wildcard. Every researcher I have talked to has 
said that is an asset that we did not have even a couple of 
years ago.
    The thing that I find most tragic is when I talk to the 
young. I am a researcher myself, and I am trying to become the 
most informed pancreatic cancer patient in the world. I go and 
talk to the researchers, researcher to researcher.
    I will tell you it pretty much stinks when I meet a hotshot 
researcher, and I know I can just ask the question, which 
parent? We would not have gotten very far with breast cancer 
research if we had only limited it to people who went into it 
because they lost their mother.
    People right now who are young researchers are not heading 
toward pancreatic cancer research because it is wildly 
underfunded and it has always been underfunded.
    I think part of the trick is to seed the junior hotshots 
with the kind of grants that are provided for young 
researchers. I think this is going to be cracked by somebody 
younger, somebody who comes at it with a genomic approach. 
There are a lot of good vaccine-based approaches that are quite 
exciting.
    But I think it is going to have to be a breakthrough. I do 
not think it is going to be another chemotherapy or radiation 
tweak. I firmly believe that there are plenty of bright people 
out there that want to attack it. What they need is they need 
the strong sense that the funding is there because I have been 
a junior researcher and I have looked over in computer science, 
what shall I work on, and I know that the smart people work on 
what there is money to work on because they are pretty ruthless 
in their careers and they should be.
    So I do not think it is at all the same game it was even 10 
or 15 years ago. I think that we have already made some strides 
in figuring out some of the genetic precursors, and there is no 
doubt there is a genetic component to this. As the previous 
speaker said, do not think I do not go to sleep every night 
without worrying about are these kids going to get my genes.
    People say, are you worried?
    I say, well, the good news is pancreatic cancer does not 
normally strike until later. If the money is there, I would bet 
everything that by the time my kids are my age, we will have it 
licked. If the money is not there, then I would not be very 
confident at all.
    I do not know if that answered your question or not.
    Mr. Obey. Let me interrupt to simply say we have six 
minutes left to make the vote. So I think we are going to have 
to leave.
    Thank you again for your testimony.
    Dr. Pausch. Thank you.
    Mr. Obey. We will have a 15 minute vote on the floor, and 
then after that we are told another 15 minute quorum call. So I 
hope we can be back here in about 20 minutes.
    [Recess.]
                              ----------                              

                                          Thursday, March 13, 2008.

                         HEPATITIS B FOUNDATION


                                WITNESS

DR. TIMOTHY M. BLOCK, PRESIDENT, HEPATITIS B FOUNDATION
    Mr. Obey. Let's see where we were.
    Mr. Block.
    Mr. Block. Mr. Chairman and Committee members, I am 
accompanied by my wife, Joan, who is a nurse.
    Mr. Obey. Good first name.
    Mr. Block. We are off to a good start.
    Mr. Chairman, thank you and the Committee for the 
opportunity to speak today about the problem of hepatitis B.
    May I also note that Congressman Honda has been 
particularly sympathetic to the problem, and I hope after my 
testimony, others on the Committee, if not already, will also 
be convinced.
    My name is Dr. Timothy Block, and I am the volunteer 
President of the Hepatitis B Foundation which my wife, Joan, 
and I and another couple from Pennsylvania founded more than 18 
years ago because someone very close to us was affected. I am 
also a professor at Drexel University College of Medicine.
    The hepatitis B virus is the world's major cause of liver 
cancer and, while other cancers are declining in rate in the 
United States, liver cancer is the fastest growing in 
incidence. If you can stop hepatitis B, you can stop most liver 
cancer.
    The numbers of people who are chronically infected with 
hepatitis B will knock your socks off. In the world, there are 
more than 400 million people who are chronically infected, and 
most of these people were infected at birth from their mothers 
and they are unaware of their infection.
    Without intervention, as many as 100 million to 140 million 
of these individuals will die from an awful liver disease, most 
notably liver cancer, but pancreatic cancer has also increased 
in those with hepatitis B.
    In the United States, there are perhaps two million 
Americans who are chronically infected. Asians and African 
Americans are disproportionately affected.
    Every time I speak to a group this size, it turns out that 
someone in the room has been affected or knows someone who has 
but the news, of course, is not all grim, thanks to the work 
that has been done largely by the CDC and the National 
Institutes of Health. There is a vaccine to prevent infection.
    But for those people who are already infected, the vaccine 
is too late. They are not helped by that. Of course, there are 
now medications to control the disease, but for half the people 
who have hepatitis B, those medications do not work.
    One more thing, not everybody who is infected becomes sick. 
So if you know you have hepatitis B, that is still not enough. 
You do not know if you are going to get sick or not. The 
disease takes decades to declare itself. It is like having a 
time bomb inside you.
    This is probably because most cases of cirrhosis and liver 
cancer, which is caused by hepatitis B, are diagnosed late. The 
current methods to treat liver cancer are in the dark ages. In 
fact, there really are not any, and early diagnosis is also 
primitive.
    So we are just getting close to some solutions, but the 
decline in public health measures and scientific research that 
is happening today is threatening to allow these problems to 
come roaring back.
    May I give you just a few examples of what I am talking 
about? There was a recent crisis in a Nevada clinic where as 
many as 40,000 people were placed at risk for infection with 
hepatitis B and other blood pathogens. This is a problem the 
Centers for Disease Control thinks might just be the tip of the 
iceberg.
    The frightening increase in liver cancer is another example 
of a threat. In the United States, there were 20,000 babies 
born to mothers with hepatitis B last year alone, and 1,200 of 
them will develop chronic hepatitis, this while there is an 
effective vaccine.
    So may I now call your attention to requests regarding the 
two Federal agencies that are most critical in our opinions to 
control hepatitis B.
    We strongly support Senator Reid's request for supplemental 
funding dedicated to the Centers for Disease Control. We 
believe that the Division of Viral Hepatitis, DVH as it is 
called, is at greatest need for this increase. DVH has had flat 
funding for the past 5 years, and we request a supplement of 
$7,000,000.
    In 2009, we ask that the CDC budget be restored to 
$7,400,000,000 with $50,000,000 dedicated to the Division of 
Viral Hepatitis. If this is too big an ask, we ask that at 
least $5,000,000 be increased in the DVH budget which is really 
the minimum.
    Finally, the National Institutes of Health, we request a 
6.7 percent increase in the fiscal year 2009 budget with 
$40,000,000 dedicated in addition for hepatitis B research. 
Right now, there is only $40,000,000 spent on hepatitis B 
compared to billions for HIV, which is so important, I know, 
and billions for biodefense. Forty million dollars for 
hepatitis B in addition will be transformational.
    In summary, may I just leave you with the words of Dr. Jay 
Hoofnagle of the NIH who said, we have this disease cornered. 
He said, at a recent meeting, we ask you that you not let it 
get away.
    I was just reading, before you guys came in, the quotes 
behind you by Dwight D. Eisenhower and Hubert Humphrey. I could 
have read those as my closing statement if I had enough time, 
but I thank you very much for the opportunity to speak.
    Thank you.
    [The information follows:]

    [GRAPHICS NOT AVAILABLE IN TIFF FORMAT]

    
    Mr. Obey. Thank you very much. I appreciate your time.
                              ----------                              

                                          Thursday, March 13, 2008.

          UNITED STATES PSYCHIATRIC REHABILITATION ASSOCIATION


                                WITNESS

MARCIE GRANAHAM, CHIEF EXECUTIVE OFFICER, UNITED STATES PSYCHIATRIC 
    REHABILITATION ASSOCIATION; ACCOMPANIED BY PETER ASHENDEN
    Mr. Obey. Next, U.S. Psychiatric Rehabilitation 
Association, Marcie Granaham.
    Ms. Granaham. Good afternoon, Mr. Chairman, members of the 
Committee. I am very pleased to be here today.
    My name is Marcie Granaham. I am the Chief Executive 
Officer for the United States Psychiatric Rehabilitation 
Association, and I thank you for allowing me to speak today.
    USPRA's mission is to improve the quality of psychiatric 
rehabilitation services, to educate the mental health workforce 
and to facilitate the community readjustment of people with 
psychiatric disabilities.
    USPRA and its members, the constituencies they serve are 
very pleased that the President's 2009 budget will continue to 
fund programs that are critical to the mental health delivery 
system infrastructure, including those identified by both 
President Bush's New Freedom Commission on Mental Health and 
the Institute of Medicine.
    However, our membership is extremely concerned with the 
overall proposed decrease in SAMHSA funding, specifically the 
proposed cuts to programs of regional and national 
significance.
    USPRA believes that as a Federal Agency, SAMHSA is uniquely 
positioned to advance the transformation of our Nation's mental 
health system. SAMHSA and CMHS have been at the forefront of 
change from the funding that SAMHSA provides for progressive 
State programs to its investment in identifying evidence-based 
practices to its anticipation of future mental health workforce 
needs.
    For the past 27 years, recovery from mental illness has 
been a priority of SAMHSA and the National Institute on 
Disability and Rehabilitation Research that is within the U.S. 
Department of Education.
    To address this priority, NIDRR and SAMHSA established a 
decade-long interagency cooperative agreement to co-fund four 
centers called Rehabilitation Research and Training Centers 
whose mission is to conduct evaluations of services and systems 
and provide training and technical assistance to service 
providers and administrators. Two of those centers are mandated 
to focus on adult mental health illnesses, and the other two 
are on children's services.
    These centers are internationally known for their 
substantive work in the area of mental illness and for their 
contributions to mental health policies, programs and systems. 
They have provided consultation to the White House, to members 
of Congress and to the Government Accountability Office.
    Although USPRA does not personally receive CMHS funding 
under the programs of regional and national significance, I can 
attest to the value and the benefits that these programs 
provide. The Rehabilitation Research and Training Centers, also 
known as RRTCs, have been instrumental in conducting rigorous 
evaluations and studies designed to expand evidence-based 
practices as well as to identify newly emerging best practices.
    The RRTCs are charged with conducting the necessary 
scientific inquiry to ensure that the government spends 
taxpayer dollars on services that are both effective and cost-
efficient. Without SAMHSA's cofunding with NIDRR, these 
programs will end.
    Another important group of programs that are funded with 
SAMHSA under the programs of national significance are the 
consumer and consumer-supported technical assistance centers. 
These are charged with advancing the recommendations of the New 
Freedom Commission and the IOM for self-directed care, recovery 
and consumer and family-centered services.
    There are a total of five technical assistance centers that 
bring recovery-oriented illness self-management tools, such as 
the Wellness Recovery Action Planning or WRAP, into the 
mainstream.
    This is critically important because the survey of State 
mental health authorities conducted by the National Association 
of State Mental Health Program Directors found that in fiscal 
year 2002 to 2003 the States spent less than 1 percent of their 
public mental health budgets on self-directed consumer-centered 
recovery-oriented services. In fact, a quarter of all States 
spend less than $200,000 a year on such services.
    At this time, I would like to introduce to the Committee, 
Mr. Peter Ashenden, who is the Executive Vice President of the 
Depression and Bipolar Support Alliance and an officer of 
USPRA. Mr. Ashenden also happens to be a person in mental 
health recovery.
    Mr. Ashenden. Good afternoon. Thank you very much for 
allowing me this opportunity to tell you my personal story.
    I was diagnosed with mental health issues almost 25 years 
ago. I know what it is like to isolate. I know what it is like 
to be paralyzed with major depression and clinical depression. 
I know what it is like to have no hope, no connections and no 
future.
    I have been there. I have done that.
    Many traditional treatments did not work for me. However, 
as a result of the development of psychiatric rehabilitation, I 
can sit before you today.
    I am the Executive Vice President of Depression and Bipolar 
Support Alliance, a national organization that has over 1,000 
support groups, 450 chapters throughout the Country that are 
helping millions of people each and every year.
    Today, I am no longer a drain on the taxpayers. Today, I am 
a taxpaying citizen which has been a real turnaround in my 
life.
    You have the power to change the problem that we have 
identified. You have the power to save lives. You have the 
power to help individuals from being a drain on taxpayers, to 
being productive and taxpaying citizens.
    These programs of regional and national significance assist 
us to lead productive, integrated lives in the communities of 
our choice instead of living in institutions, jails or being a 
plight on communities through homelessness.
    By assuring that these programs are not cut, you can help 
my peers to have their voice heard, to have safe and affordable 
housing, to have gainful and meaningful employment, to have 
social support and connections that so many of us want, and 
maybe even a date on a Saturday night as well as being a 
participant in our communities as fully taxpaying individuals.
    My written testimony covers the importance of the research 
and the importance of funding these programs.
    I ask you, please. I have a fear.
    Excuse me, I have a far more important statement to make 
here. That is to please help save lives. Please allow my peers 
to experience the hope and connections that I have as a result 
of hard work and the right supports.
    Please do not allow these cuts to occur. It will result in 
homelessness, institutionalization and death.
    Thank you very much for allowing me to share my personal 
story with you.
    [The information follows:]

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    Mr. Obey. Well, thank you both for your testimony and thank 
you, specifically, for sharing your story with us.
    Let me again point out the context in which you are 
testifying. The White House's fiscal year 2008 budget requested 
$807,000,000 for the Center for Mental Health Services at the 
Substance Abuse and Mental Health Services Administration. This 
was a cut of $77,000,000 or 9 percent below the level that we 
provided in the fiscal year 2007 joint resolution.
    This Committee increased the appropriation for the center 
to $911,000,000, an increase of $104,000,000 or 13 percent 
above the President's level.
    But, again, the President this year is proposing to 
decrease the funding to $784,000,000, a cut of $127,000,000 or 
14 percent below the 2008 level.
    That is the context in which you are testifying, and I 
appreciate your coming.
    Mr. Ashenden. Thank you very much for allowing us.
    Mr. Obey. You bet.
    I understand Dr. Weldon would like to introduce the next 
witness.
                              ----------                              

                                          Thursday, March 13, 2008.

         NORTHWESTERN UNIVERSITY'S FEINBERG SCHOOL OF MEDICINE


                                WITNESS

DR. RICHARD BURT, CHIEF, DIVISION OF IMMUNOTHERAPY, NORTHWESTERN 
    UNIVERSITY, CHICAGO, ILLINOIS; ACCOMPANIED BY BARRY GOUDY
    Mr. Weldon. Yes. Thank you, Mr. Chairman.
    It is a pleasure for me to introduce Dr. Richard Burt at 
Northwestern University. He brought along a patient.
    I am very pleased that you have allowed the time for this.
    Dr. Burt is doing some very fascinating work on treating 
essentially incurable patients, people who have failed standard 
therapy, using a variety of different adult stem cell 
transplant methods. Indeed, he is actually, in some instances, 
the person the NIH turns to when they have a case they cannot 
fix. So it is a real honor to have Dr. Burt here, and he 
brought along a fascinating patient.
    Thank you for allowing the time for them to be here on the 
program, Mr. Chairman. I appreciate what you do.
    Dr. Burt. Chairman Obey and honored members of the 
Committee, Congressmen and Dr. Weldon, thank you. It is my 
honor and my pleasure to be here.
    I am the Chief of the Division of Immunotherapy at 
Northwestern University in the great City of Chicago.
    What I am known for in my field is translational research 
in stem cells. So I go from the laboratory with stem cells to 
preclinical animal models that often take many years of work 
and from that experience to the bedside, designing protocols, 
not pharmaceutical protocols but our own through the IRB, 
through data safety monitoring boards, through the FDA and then 
initiate those treatments on patients.
    What I am in my heart, though, is a patient advocate. I 
spend a great deal of my time fighting with insurance companies 
and looking for money to do the work that we need to do, to do 
what I love to do, and I am here to tell you about something 
that is succeeding.
    At Northwestern University, we have treated over 200 
patients now with autoimmune diseases with the blood stem cell. 
That is a type of adult stem cell that has been used for years 
to treat leukemias. It turns out it is also the immune stem 
cell.
    So the concept I had 20 years ago was very simple, a basic 
concept. It is that we could reboot your immune system just 
like you reboot a computer. We could remove this police force 
that was supposed to protect you from pathogens and has turned 
around and attacked your own body and regenerate a new one from 
the immune compartment.
    As it turns out, in the animal models and in human beings, 
by whatever design that is still being worked out, when it 
regenerates, the default is tolerance to self. We reestablish 
tolerance.
    As I mentioned, we have been doing this in over, now, 200 
patients. We currently have five patients going through 
transplant for autoimmune diseases in-house today.
    We have treated patients and are treating patients with 
multiple sclerosis, systemic sclerosis, systemic lupus 
erythematosus, rheumatoid arthritis, Crohns disease, myasthenia 
gravis, chronic inflammatory demyelinating polyneuropathy, 
autoimmune-related retinitis and optic neuritis which causes 
blindness, polymyositis, different vasculitis, nerve vascular 
Behcet's, nerve vascular Churg-Strauss, Wegener's, primary 
biliary cirrhosis, we recently did a child with regressive 
autism, Devics and type 1 diabetes.
    We have been using, for the most part, autologous and now 
we are moving into cord blood and sibling.
    Before you, you should have some pictures of some patients 
just as evidence, pre-transplant and one year post-transplant 
of a patient with lupus.
    Here is an example of another patient pre- and one year 
post-transplant. These patients had failed pretty much all 
therapy.
    This is a patient suffering with severe ischemic ulcers 
throughout her body and internal organs. It was occurring in 
her heart as well, that would get infected, severely painful, 
on narcotic drips. Post-transplant, she has been in remission 
five years now.
    Here is a patient with systemic sclerosis, whose lungs were 
very inflamed. It was destroying her lungs. You see on the next 
scan, post-transplant, to your right, that brown glass haze in 
the periphery of the lungs is gone. That destruction of the 
lungs is stopped and, in some cases, improved if we get it 
early enough.
    I have put here a figure that we have just submitted to a 
journal of a patient who was going blind, referred to us from 
the University of California at Davis and Stanford. They had 
three different immune suppressive regimens. Her visual acuity 
was worsening. Got a transplant and since the transplant, off 
all therapy. Her vision is markedly improved.
    I wanted a patient of mine who has MS, who you cannot put 
in a picture here, to briefly give you a description of his own 
experience from this.
    Mr. Goudy. Hi. My name is Barry Goudy. Mr. Obey, thank you 
for the invitation.
    In 1995, I was diagnosed with multiple sclerosis. Though I 
received IV drips once a month and I also received weekly shots 
that I injected in myself, periodically I would fall out of 
remission and have exacerbations, go back into the hospital, 
and it would take more and more medicine to revive me and put 
me back out.
    Since I met Dr. Burt, I went through a stem cell transplant 
in Chicago at Northwestern, and I have been MS-free now for 
five years.
    I go back every year to Chicago for the protocol, and July 
1st of this year will be the fifth year, and I live a normal, 
active, happy life. Stem cell research is very, very important.
    Thank you.
    [The information follows:]

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    Mr. Obey. Thank you. Well, thank you both for testifying. I 
appreciate your dropping by yesterday, and I appreciate Dr. 
Weldon bringing you to the attention of the Committee. I am 
happy to hear what you are doing.
    I am certainly happy to know what has happened to you.
    Mr. Goudy. Thank you.
    Mr. Obey. Any other comments?
    Mr. Weldon. I just had a quick question. You said you did 
one autistic case?
    Dr. Burt. Yes.
    Mr. Weldon. What was the result from that?
    Dr. Burt. I do not want this to become confused. The 
details are very important. This may not apply to the vast 
majority of autistic children.
    But what we selected were kids with regressive autism who 
developed normally, normal milestones and then had a setback 
and developed severe autism on their CARS score and had 
abnormal immune parameters and specific cyalate in the blood 
and autoantibodies to Purkinge fibers.
    We treated one such patient who, at this point, we have not 
yet published on but is behaving normally with no clinical 
manifestations of autism at this time.
    This is unpublished data and probably not the best format 
for me to release it. I do not want the press to get on it. 
[Laughter.]
    Mr. Weldon. Yes. Before you head back, if you could stop by 
my office, I may want to talk to you a little bit more about 
it. I meant to ask you about that earlier. Thanks.
    Dr. Burt. Thank you, Dr. Weldon.
    Mr. Obey. Thank you both very much.
    Dr. Burt. Thank you, Mr. Obey.
    Mr. Obey. You bet.
                              ----------                              

                                          Thursday, March 13, 2008.

                AMERICAN ASSOCIATION FOR DENTAL RESEARCH


                                WITNESS

DR. MARC HEFT, PROFESSOR OF ORAL AND MAXILLOFACIAL SURGERY AND 
    DIAGNOSTIC SCIENCES, UNIVERSITY OF FLORIDA
    Mr. Obey. I understand Mr. Simpson would like to introduce 
the next witness.
    Mr. Simpson. Yes, I would like to welcome Dr. Heft to the 
Committee from the NIDCR and representing the dental profession 
and the work that the NIDCR does out of NIH.
    Welcome to the Committee.
    Mr. Obey. I do not know that Mr. Simpson knows much about 
dentistry.
    Mr. Simpson. Well, this morning in the Energy Subcommittee, 
we had Dr. Orbach there who is a physicist. Since you cannot 
ask them intelligent questions because they know so much, I had 
to ask him if he understood why it was important to brush your 
teeth before you eat rather than after you eat, and he did not 
get the point. [Laughter.]
    Mr. Obey. Please proceed.
    Dr. Heft. Mr. Chairman and members of the Committee, I am 
Mark Heft, Professor of Oral and Maxillofacial Surgery and 
Diagnostic Sciences at the University of Florida. My testimony 
is on behalf of the American Association of Dental Research.
    I thank the Committee for the opportunity to testify about 
the exciting advances in oral health science.
    Americans are living better and healthier lives into old 
age due to recent advances in healthcare including dental 
health and oral healthcare research. The National Institutes of 
Dental and Craniofacial Research has made this possible through 
research, research training and the dissemination of health 
information.
    Concerned that scientific opportunities were outpacing 
funding at the NIH, the U.S. Congress doubled the NIH budget 
from 1998 through 2003 which led to a remarkable period of 
discoveries.
    However, flat funding over the past six years for the NIH 
has left researchers and their institutions vulnerable to the 
rising costs of biomedical research. We are also in jeopardy of 
losing the pipeline of the next generation of scientists.
    My testimony today will focus on our recent accomplishments 
in three areas and what still needs to be addressed in those 
areas.
    The first area is salivary diagnostics. For many oral and 
systemic diseases, early detection before clinical symptoms 
appear offer the best hope for successful treatment. 
Fortunately, research funded by the NIDCR is developing highly 
sensitive and accurate methods to detect oral and systemic 
conditions at their earliest stage, using saliva as a 
noninvasive diagnostic fluid.
    Saliva is easy and painless to collect, providing a major 
advantage over the use of blood or urine for diagnostics tests. 
The same biomarkers found in blood are also found in saliva.
    We are close to marketability for a diagnostic test for 
oral cancer. Other diagnostics tests are in the pipeline.
    The second area is tooth decay. Tooth decay continues to be 
a major health concern to millions of Americans. It is one of 
the main causes of poor oral health and pain throughout life 
and a major contributor to oral health disparities in this 
Country.
    Early childhood carries is a painful, costly and severe 
form of tooth decay and is particularly common among Alaska 
Native and American Indian children. We are calling for 
$1,000,000 per year for 3 years to NIDCR's budget for research 
and clinical studies to address early childhood carries in 
cooperation with the Indian Health Service.
    The third area is oral and systemic diseases. Oral health 
plays a substantial role in general health and well being. For 
example, oral disease and conditions can greatly affect 
systemic conditions such as diabetes, may be linked to 
cardiovascular diseases and play a role in initiating early 
delivery in pregnancy.
    Oral bacteria associated with periodontal disease cause 
inflammation in the mouth. Scientists have uncovered a 
relationship between this inflammation and a higher risk of 
developing cardiovascular disease. Further, periodontal disease 
may also affect insulin resistance, glycemic control and the 
risk of developing other diabetic complications. Finally, 
preexisting gum disease in pregnancy is a risk factor for 
preterm or low birth weight babies.
    NIDCR-funded research is evaluating these relationships.
    As you can see, Mr. Chairman, there are many research 
opportunities with an immediate impact on patient care that 
need to be pursued. Additional funds can help greatly in 
bringing these opportunities to fruition. Imagine a world where 
disease can be detected at its earliest possible moment with a 
quick, painless and non-invasive salivary-based test.
    Mr. Chair, a great amount of exciting research is underway, 
and the potential to improve oral health specifically and 
overall health in general is significant. Therefore, we are 
requesting a funding level of $438,000,000 for the NIDCR for 
fiscal year 2009.
    Thank you for the opportunity to testify today.
    Mr. Obey. Thank you. I appreciate your time.
    [The information follows:]

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                                          Thursday, March 13, 2008.

                         SCLERODERMA FOUNDATION


                                WITNESS

CYNTHIA CERVANTES
    Mr. Obey. Next, the Scleroderma Foundation, Cynthia 
Cervantes.
    Ms. Cervantes. Chairman Obey and the members of the 
Subcommittee, thank you for the opportunity to appear before 
you today, and I especially want to thank Congresswoman Sanchez 
and Congresswoman Roybal-Allard from the Los Angeles area.
    I am Cynthia Cervantes, and I am 13 years old and in eighth 
grade. I live in Southern California.
    Two years ago, I was diagnosed with scleroderma. 
Scleroderma literally means hard skin. What it does especially 
in my case, it causes my internal organs to harden and become 
smaller.
    Two years ago, I began to experience sudden weakness. My 
body would ache and my vision was blurry. Some days it was so 
bad I could barely get myself out of bed and go to school.
    I was taken to see a doctor after my feet became so swollen 
that calcium began to ooze out. It took the doctors one year to 
figure out exactly what was wrong with me because of how rare 
scleroderma is and how complicated the symptoms are.
    Once again, I have been told that there is no known cause 
for scleroderma which affects three times as many women as men. 
Generally, women are diagnosed between the ages of 25 and 45, 
but sometimes kids like me are affected early in life. There is 
no cure for scleroderma, but there are treatments, treatments 
that have been delivered with the support of the National 
Institutes of Health.
    Today, I have to take nine pills and one inhaler three 
times a day, and I always have to wear gloves and a sweater 
even on a hot day as part of my treatment.
    Every month, I also have to go to the doctors to get some 
more shots, and I have to eat a special diet because my 
scleroderma is making my internal organs contract and slip at 
an angle, because it helps me digest my food.
    I love to play basketball, but it is very difficult now 
because I become tired very quickly and it is hard to keep up 
with the other kids.
    The Scleroderma Foundation's outreach program has been very 
helpful to me and my family. The Foundation provided us with 
materials to educate my teachers and others about my disease. 
Also, the local Southern California support groups the 
Foundation helped organize are helpful because they help show 
me that I can live a normal, healthy life and how to approach 
those who are curious about why I wear gloves even in hot 
weather.
    It really means a lot to me to be able to interact with 
other people in the same situation as me because it helps me 
feel less alone.
    Mr. Chairman, because no one knows what causes scleroderma 
and we have a great deal to learn about it in order to be able 
to effectively treat it, I respectfully ask you to please 
significantly increase funding for the National Institutes of 
Health, so treatments can be found for other people like me who 
suffer from this sickness.
    I also ask that you make it known to the leaders of NIH and 
the institute which studies skin disease, NIAMSD, that you 
consider scleroderma research to be a priority.
    Mr. Chairman, on behalf of thousands of people suffering 
from scleroderma and the Scleroderma Foundation, I would like 
to thank you for the chance to speak before the Subcommittee 
and for your consideration of my request. Thank you.
    [The information follows:]

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    Mr. Obey. Thank you.
    Did either of you want to say anything?
    Let me simply say, you are in eighth grade. You are doing a 
whole lot better in the eighth grade than I did. [Laughter.]
    Mr. Obey. I was kicked out of grade school when I was in 
eighth grade.
    I will yield to you just a second. I just want to say that 
we appreciate your coming here today. You did a fine job 
testifying, and I am glad that people who know about this 
disease were smart enough to pick a really good spokesman to 
explain the situation today.
    With that, let me yield to the gentlewoman from California.
    Ms. Roybal-Allard. Mr. Chairman, it was during the break 
that I learned that Cynthia was going to be here, and I want to 
thank her for her testimony.
    Also, she is a wonderful example of why I am so proud of 
the constituents of the 34th Congressional District. She is 
from the City of Huntington Park which I proudly represent.
    So, thank you for being here, Cynthia.
    Ms. Cervantes. You are welcome.
    Mr. Obey. Let me just point out when the Secretary of 
Health and Social Services was here, we were talking about the 
fact that every time this Committee appropriates money, people 
will point to the cost of appropriating the money, but they 
very seldom talk about the cost of not appropriating the money.
    As I understand it, if we take a look at what is being 
invested nationwide in this disease, it is about $12,000,000. 
That is a very small amount. If you compare that amount just to 
the economic cost of the disease, with everything from medical 
treatment to lost income to you name it, not to mention the 
human cost, I think it amply illustrates why we need to do far 
more than we are doing with respect not just to this disease 
but virtually everything else that NIH does.
    Thank you very, very much.
    Ms. Cervantes. Thank you.
                              ----------                              --
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                                          Thursday, March 13, 2008.

                   PULMONARY HYPERTENSION ASSOCIATION


                                WITNESS

JOANNE SCHMIDT
    Mr. Obey. Next, Pulmonary Hypertension Association, Joanne 
Schmidt.
    Ms. Schmidt. Good afternoon, Chairman Obey, members of the 
Subcommittee. On behalf of myself and the Pulmonary 
Hypertension Association, thank you for the opportunity to 
testify this afternoon.
    My name is Joanne Schmidt. I am from Huntington, New York, 
and I have pulmonary hypertension.
    Pulmonary hypertension refers to high blood pressure 
between the heart and the lungs, resulting in an enlarged heart 
that eventually loses its ability to pump. The disease is 
underdiagnosed, deadly and incurable. PH can occur without a 
known cause or can be secondary to a number of other conditions 
including scleroderma, lupus and sickle cell.
    In my case, this devastating condition runs in my family. 
My mom's sister was diagnosed with pulmonary hypertension in 
1963 at the age of 23. She died within six months. My brother 
was diagnosed in 1995 at the age of 34. Three years later when 
I was 34, I began to develop symptoms of PH, and I knew 
immediately what they were.
    I joined the Board of Trustees of the Pulmonary 
Hypertension Association in 2001. PHA is the Nation's oldest 
and largest nonprofit organization dedicated to the PH 
community.
    I am also the founder and co-leader of the Long Island, New 
York support group. The group remains large and active. 
However, we unfortunately lose members to PH every year.
    I would like to extend my sincere thanks to the 
Subcommittee for your past support of pulmonary hypertension 
programs at the National Institutes of Health, Centers for 
Disease Control and Prevention and Health Resources and 
Services Administration. These initiatives have opened up many 
new avenues of promising research, helped educate hundreds of 
physicians in how to properly diagnose PH and raised awareness 
about the importance of organ donation and transplantation 
within the PH community.
    I am pleased to report that we are making good progress in 
our fight against this deadly disease. Six new therapies for 
the treatment of PH have been approved by the FDA in the past 
ten years. However, there is still a long way to go on the road 
to a cure, and biomedical research holds the promise of a 
better tomorrow for our patients.
    We are truly honored to have a great partner in the 
National Heart, Lung and Blood Institute, and I would like to 
take this opportunity to recognize the Director of NHLBI, Dr. 
Elizabeth Nabel, for all that she has done for our community. 
We are particularly excited about the two centers of excellence 
in PH that NHLBI initiated last year.
    For fiscal year 2009, the Pulmonary Hypertension 
Association joins with other members of the research and 
patient community in recommending a 6.5 percent increase for 
the NIH. We are very aware of the strong need for robust 
support of the NIH.
    A few years ago, leading PH researchers submitted a 
proposal to NIH, focused on the blood thinning drug, Warfarin, 
as a possible new treatment for PH. This concept was greeted 
enthusiastically within our community because it could reduce 
the cost of treating PH from hundreds of thousands of dollars a 
year to simply hundreds of dollars a year.
    The proposal received an excellent score but did not make 
the declining NIH payline. It is critical that studies like 
these move forward in the future.
    Finally, I would like to commend the Subcommittee for 
actively addressing the current backlog in Social Security 
Disability applications at the Social Security Administration. 
Many PH patients end up applying for disability coverage, and 
streamlining the benefits process would go a long way toward 
improving the quality of life for our most in need families.
    Once again, Mr. Chairman, thank you so much for the 
opportunity to testify today.
    I would like to close by saying a special thank you to a 
great champion of the PH community and a true friend of 
everyone on Capitol Hill, the late Congressman Tom Lantos. 
Representative Lantos became a tireless advocate for our cause 
after his beautiful granddaughter, Charity, was diagnosed with 
pulmonary hypertension a few years ago. We miss him terribly, 
and we honor his legacy today.
    Thank you so much.
    [The information follows:]

    [GRAPHICS NOT AVAILABLE IN TIFF FORMAT]

    
    Mr. Obey. Thank you very much.
    Let me simply say that I have a very good friend who 
happened to have testified before this Committee last week 
whose wife has the same problem. So we have seen it affect good 
people, up and close.
    You indicate that you want us to support an increase of 6.7 
percent for NIH. I would dearly love to do that.
    We have to face the reality that last year the bill that we 
sent to the President, that he vetoed, provided a relatively 
small increase in NIH funding of $770,000,000, and we came 
within four votes of being able to override his veto. We got 
66.2 percent of the votes. We needed 66.7.
    So we will be looking for ways to try to produce a bill 
which is veto-proof. If we cannot find that in this Congress, 
then we will have no choice but to simply pass a continuing 
resolution taking us through February, so we can get a new 
start with someone who will make compromises on these issues.
    Thank you very much.
    Ms. Schmidt. Thank you so much.
                              ----------                              --
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                                          Thursday, March 13, 2008.

                      TUBEROUS SCLEROSIS ALLIANCE


                                WITNESS

TOMMY LINDSEY, BOARD MEMBER, TUBEROUS SCLEROSIS ALLIANCE
    Mr. Obey. Next, the Tuberous Sclerosis Alliance, Tommy 
Lindsey.
    Mr. Lindsey. I did not have a chance, prior to coming in, 
to hand something over. Do you mind if I drop this off to you?
    Mr. Obey. That is fine. Thank you.
    Mr. Lindsey. First, I would like to say thank you for 
granting me this opportunity to speak before you today.
    I would like to give a special thanks to Ranking Member 
Walsh, even though he is not in the room at the moment, for 
being so supportive of our organization in the past and 
hopefully in the future as well.
    I would also like to make another point, that we have 
something in common. I was also kicked out of grade school. It 
was Catholic school and in kindergarten.
    Mr. Obey. We will form a union. [Laughter.]
    Mr. Lindsey. I am here today on behalf of the Tuberous 
Sclerosis Alliance. I am a current board member and, more 
importantly, a dad to a little boy, Tommy, who suffers from 
tuberous sclerosis.
    Tuberous sclerosis is a rare genetic disorder that causes 
the formation of tumors in all your vital organs, causing 
severe mental and physical retardation, sometimes death. It 
affects every major organ in the body.
    We all have these two genes that naturally suppress tumor 
growth. If either one or both happen to mutate, you lose the 
ability to fight off tumors. It is a one-third passed on 
mutation, two-thirds, spontaneous mutation.
    My son happened to be a spontaneous. The sperm and the egg 
meet, the gene mutates, and you have this problem.
    Tommy was born with numerous tumors in his brain, two in 
his heart, one in each eye, and he has a bunch on his skin. We 
have to get him scanned every six months to be sure that he 
does not have any new tumors growing in any other organs, and 
this is going to go on for the rest of his life.
    They are benign in the sense that they are nonmalignant, 
but they are far from benign.
    Tommy was first diagnosed at five weeks old from a series 
of epileptic seizures which progressed over time. We brought 
him into the hospital at five weeks old because of the, for 
better lack of a word, oftency of his disease, if that is a 
word.
    It is very unknown even in the medical community. My wife 
and I were accused of shaken baby syndrome for three days 
because the medical doctors believed they were looking at blood 
spots in his brain. They did not realize they were looking at 
tumors. After a series of tests and MRIs, they realized they 
were looking at tumors, and Tommy was diagnosed with tuberous 
sclerosis.
    The diagnosis was very bleak. I was told that Tommy would 
never work. He would never talk. He would be both severely and 
physically retarded and that I should consider an institution.
    This was my five week old son. It was very hard to take. I 
was knocked on my butt.
    Growing up, I just want to tell you a little bit about 
myself. I grew up in the city limits, one of the five boroughs 
in New York. My father left when I was four. I was on welfare, 
food stamps, the whole works. I have two older sisters and my 
mom. We struggled our whole lives, growing up, but we have all 
done pretty well for ourselves as adults.
    I promised myself growing up that I would be a better 
father to my children once I had them, if that was at all 
possible, than my father was to me. Unbeknownst to me, I was 
going to wind up being this advocate and having a child handed 
to me that I was not prepared to be the advocate or father for.
    There is no cure for tuberous sclerosis. I realized that 
right away. I never once said, why me?
    I did say, why him, every day. I still do to this day 
because he bothered nobody. If anything, give it to me because 
I know that I can handle it from the way I was brought up and 
what I can deal with.
    Tommy, himself, has gone through a series of brain 
surgeries to control his epilepsy. Back in 2003, he had three 
brain surgeries over eleven days, where they removed a large 
tumor from his right frontal lobe. Those are the pictures that 
I just handed to you now. That is actually my son in the OR. 
Those are not just pictures from a textbook.
    He is on cocktails of anti-epileptic drugs on a daily 
basis. He has gone through 13, none with any help.
    I cannot stress the fact that something has to be done. We 
need more money. We need it. So is everybody else who has a 
request in this room.
    We are requesting we get--I am sorry. I am a little 
nervous. I am usually not nervous. I am usually a pretty big 
ham. I am also known as the Forest Gump of tuberous sclerosis.
    You might remember me from three years ago. I was here with 
the Oscar-nominated actress, Julianne Moore, which I was 
fortunate enough to bump into in a chance meeting and get her 
to jump on board. She is now our national spokesperson.
    But what we are asking for is an increase of 6.7 percent 
which a few other people have mentioned today, in the NIH 
funding to help do more research for tuberous sclerosis.
    We have painted the Hill. Two weeks ago, we organized a 
march with constituents, family members, some members 
themselves who have tuberous sclerosis. We had a total of 290 
meetings two weeks ago, asking the Appropriations Committee to 
appropriate $10,000,000 in the CDMRP for more research dollars 
for tuberous sclerosis.
    We believe it is a very modest request. At the present 
time, we were granted $4,000,000 in 2007, but for 2008 we are 
hoping to get that increased to $10,000,000.
    We are also asking that this Committee would be supportive 
and help us in funding a new program in the CDC to help us 
better understand the national prevalance of TSC and train 
individuals in the medical community to help us better 
understand tuberous sclerosis in general.
    One example was what I gave you earlier is that you have 
people going to the doctors. I live in a city, New York City, 
where some people consider are the best doctors in the world, 
some of the best doctors in the world, and I am being accused 
of shaken baby syndrome and being told to put my child in an 
institution.
    If we can better educate the medical community, the 
researchers in general, we can help treat these patients even 
if we cannot cure them which is obviously our main goal. We do 
not want to walk into a doctor's office where people are told 
that you have to put your child into an institution. We want 
them to have an idea of what needs to be done. We need some 
kind of protocol.
    At the present time, everybody walks in like a guinea pig, 
and everybody just takes a shot in the dark to see what might 
work, what epileptic drugs. It is the number one genetic cause 
for epilepsy, number two genetic cause for autism.
    We do have a pathway now. We know the two genes that have 
caused tuberous sclerosis. If we cure tuberous sclerosis, we 
might help many of the people that walk through these doors 
that are requesting for help as well.
    The fact that it has a link to diabetes, there is a link to 
autism, a link to epilepsy, the link to cancer, the tumor gene 
itself. If we can find a way to cure or stop that tumor gene or 
somewhere down the line, we also will help find a way to stop 
and cure most cancers.
    In some meetings with some of the hierarchy in NIH and 
other people on the Hill and researchers, we have been told in 
meetings that tuberous sclerosis is curable. We just need the 
funding. We are told that because of the strides that have been 
made in such a short period of time, we are kind of like the 
hot, sexy disease right now, if you want to call it that, if 
there is a hot, sexy disease.
    Researchers are coming to the Tuberous Sclerosis Alliance, 
putting in grant applications that we cannot fund. Over the 
years, we have funded over $12,000,000 in research grants on 
our own as a private organization. So we are not looking for a 
handout. We are actually looking for a partner with the 
government, and hopefully together we can make a difference.
    My son, Tommy, is my world. I never expected to get what 
was handed to me. I look at him every day, and I try to promise 
him.
    I promised myself I would be a better dad than my dad was. 
Now I have to promise my son that he was not born with tuberous 
sclerosis for no reason at all. If anything else, even if I 
cannot cure him, at least I can help the people coming in 
behind him. If that is going to be his legacy, if it is just a 
rationalization to make myself feel better, at least it is 
doing something.
    But I believe in this Committee. I believe in the United 
States Government because we do help people as a whole, even 
around the world, not just here. Everyone in this room, 
everyone on this Hill can make a difference.
    If you look back and we needed to build the atomic bomb, 
what did we do? We put the right people in the room, gave them 
the funding and said, do not come out until it is done. It was 
done.
    We wanted to send someone to the moon, same thing.
    If we want to cure tuberous sclerosis, which in turn will 
cure many other diseases, we need to do the same thing and we 
need more funding. I greatly urge you to support our tasks here 
the best you can.
    Thank you.
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    Mr. Obey. Well, thank you very much.
    Let me simply say, I think you are a terrific father and a 
terrific spokesman.
    I would simply make the point that what we are going to 
have to do is simply get enough votes to overcome the White 
House resistance or else get the White House to agree to make 
significant compromises in their budget because, as you 
mentioned, I have not heard a single person here come in and 
say, why do not you guys get your act together and cut cancer 
research, but that is what the Congress and the President did 
two years ago.
    We just cannot afford many more years like that. Certainly, 
your son cannot. I know you cannot, but we appreciate your 
telling your story today. I know it is painful.
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                                          Thursday, March 13, 2008.

              AMERICAN ASSOCIATION OF COLLEGES OF NURSING


                                WITNESS

DR. JEANETTE LANCASTER, PRESIDENT, AMERICAN ASSOCIATION OF COLLEGES OF 
    NURSING, DEAN, UNIVERSITY OF VIRGINIA SCHOOL OF NURSING
    Mr. Obey. The American Association of Colleges of Nursing, 
Dr. Jeanette Lancaster.
    Dr. Lancaster. Good afternoon, Mr. Chairman and Mr. 
Simpson. It is a pleasure to be here with this Subcommittee and 
the staff members who work so diligently to help you.
    I am the President of the American Association of Colleges 
of Nursing and the Dean at the University of Virginia School of 
Nursing, and I am here to speak on behalf of increased funding 
for Title VIII which I know you are very familiar with and you 
have been supportive to funding for nursing in the past.
    I guess the bottom line is we hear all of these difficult 
stories today that an investment in the profession of nursing 
is an investment in helping the people who have spoken today 
before me because without our graduates the care that they get 
will be severely limited compared to the care that they need.
    I do understand the difficult situation, and there is so 
much of a need in NIH and in HRSA for both the workforce and 
the research to report the new recoveries and advancements.
    As I think all of you know, we are in the middle of a 
decade-long nursing shortage. This is the most difficult 
shortage we have ever had. It is a complex shortage but to put 
it in the simplest terms, it is a total imbalance between 
demand and supply.
    The demand for healthcare is growing and it will grow even 
further as those of us who, regrettably, are entering the baby 
boom generation will need more healthcare. That comes at a time 
when our ability to supply new nurses is diminished compared to 
those times in the past.
    Now you might think well, that is because people do not 
want to become nurses, but that is really not the case at all. 
Last year, in our colleges of nursing, we documented the 
turning away of 40,000 students who wanted to become a nurse.
    In my State of Virginia, we turned away over 1,400 students 
who wanted to become a nurse. At the University of Virginia, we 
will admit 56 students directly from high school and competing 
for those 56 spots are 404 candidates.
    In every way you can, the school at which I am a dean, 
which is just reflective of the national situation, it is 
running this year a four to one to an eight to one ratio of 
those who wish to come and those who will be able to come.
    So it is not that people do not have an appetite to become 
a nurse. It is that we do not have the faculty to enable us to 
increase more nursing students.
    Historically, there are three things that prohibit us from 
increasing our class size: lack of clinical sites, lack of 
facilities to educate. Classroom seats, the fire marshal is 
very fussy about how many people you put in a classroom.
    Those can be overcome. Faculty are creative, and you can 
find new ways to put chairs in rooms. But what cannot be 
overcome simply is finding enough faculty to teach the 
students, and that is where Title VIII has been a big help.
    In fact, as I think back and I was thinking back a long 
time, I actually was supported in my master's program in 
psychiatric nursing through Federal funds, Federal training 
funds which paid for tuition and fees for students to get 
master's degrees in nursing. So many of us who are in the 
workforce now have been part of the Title VIII program.
    Basically, this program provides the funding to prepare 
nurses who can provide primarily healthcare services and many 
are those nurse practitioners, nurse anesthetists. It also 
provides funding for people who want to become faculty. That, 
of course, as I have already said, is the chief problem that we 
have in front of us is just the lack of funds.
    Just like NIH needs funds and not a single one of us in 
schools of nursing would deny that NIH does. We all know NIH 
needs funds, but the workforce development areas need funds as 
well. I do know that you know that.
    We are respectfully asking as a nursing community for 
$200,000,000 to support Title VIII. We do appreciate your 
attention and your thoughtfulness and your help to us in the 
past, and we fully appreciate the dilemma you are in.
    Thank you.
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    Mr. Obey. Thank you.
    Again, to put it in context, the President's fiscal year 
2008 budget proposed to cut nurse training programs by 
$45,000,000. The House passed a bill last year and was able to 
add $60,000,000 to the President's request. A vetoed conference 
report would have provided $63,000,000 more than the President 
asked for.
    The final bill that we were able to pass still contained 
$51,000,000 more than the President and $6,000,000 above the 
2007 level, but for the coming fiscal year, the President 
proposes to cut nurse education programs by $46,000,000 or 30 
percent below the current level. So we start out in the hole 
again with this as we do with so many other programs.
    Dr. Lancaster. That is right, and the cuts that the 
President is proposing are very heavily in advanced nursing 
education which would be the preparation of nurse practitioners 
and faculty, which are two huge demand needs in our Country.
    So we thank you. We wish you to take your vitamins daily 
and have the strength to do what you need to do.
    Mr. Obey. My wife tells me that too. [Laughter.]
    Dr. Lancaster. Well, if you do not, you are in the same 
boat with Al Roker and Matt Lauer. They announced today they do 
not take vitamins. We need to get after them.
    Mr. Obey. Thank you very much.
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                                          Thursday, March 13, 2008.

                 COALITION FOR HEALTH SERVICES RESEARCH


                                WITNESS

KENNETH E. THORPE, BOARD MEMBER, COALITION FOR HEALTH SERVICES 
    RESEARCH; PROFESSOR OF HEALTH POLICY AT EMORY UNIVERSITY; EXECUTIVE 
    DIRECTOR FOR THE PARTNERSHIP TO FIGHT CHRONIC DISEASE
    Mr. Obey. Lastly, the Coalition for Health Services 
Research, Kenneth Thorpe.
    Mr. Thorpe. Mr. Chairman, members of the Subcommittee, 
thank you for the opportunity to testify today on behalf of the 
Coalition for Health Services Research.
    My name is Ken Thorpe. I serve as a board member of the 
Coalition. I am also a Professor of Health Policy at Emory 
University in Atlanta and serve as the Executive Director for 
the Partnership to Fight Chronic Disease.
    The coalition represents the interests of 3,500 researchers 
and policy experts as well as 130 organizations that produce 
and use health services research.
    On February 14th of this year, I had the pleasure of 
testifying in front of this Subcommittee about the escalating 
challenges we face in healthcare: high and rising healthcare 
costs, rising numbers of uninsured, uneven quality of 
healthcare. I also talked a little bit about the 
underinvestment that we make in research and development to 
find solutions to these problems.
    For example, chronic diseases, as you have heard about many 
of these today, account for fully 75 percent of the over 
$2,000,000,000,000 we spend on healthcare. Healthcare spending 
has been growing faster than our economy for many years and has 
projected to double in as little as 10 years.
    Despite what we spend, research tells us that we only 
receive the appropriate care about half the time. The bottom 
line is America spends more on healthcare than any other 
nation, but we are in poorer health. We are simply not getting 
what we pay for, and we are not investing in healthcare wisely.
    Health services research, the field in which I work, 
provides the data and evidence needed to make better decisions 
and develop effective policy to optimize healthcare financing, 
facilitating access to the delivery system and improve 
healthcare outcomes. Unfortunately, despite what we know and 
what we can learn from the health services research field, 
there is an erosion in Federal funding for this important 
field.
    For the last five years, the Coalition has been collecting 
information on Federal funding for health services research and 
data. From what the Federal agencies report, we know that 
Federal expenditures have remained constant over this time 
period at about $1,500,000,000 a year. This equates to just 
0.075 percent of the $2,000,000,000,000 we spend in healthcare 
annually.
    Since 2003, the Federal funding has not increased. The 
field's purchasing power has continued to decline, despite the 
increased need for better information and more innovative and 
effective solutions.
    If the Federal Government is going to start bending the 
cost curve and getting better care at better value, it will 
need to increase its investment in health services research. It 
is a true public good, provides essential tools to make needed 
improvements in our health system, improvements that will 
benefit all Americans. Most importantly, increasing Federal 
funding for health services will help us stave off the mounting 
challenges we face in healthcare and in healthcare 
entitlements.
    We ask that the Subcommittee strengthen the capacity of the 
health services research field to address the challenges 
America faces in providing high quality, cost-effective 
healthcare.
    AHRQ, the Agency for Healthcare Research and Quality, is 
the lead agency of our field, yet chronic underfunding combined 
with an increasingly earmarked budget threatens the agency's 
ability to achieve its important mission.
    We recognize the budgetary context in which you are 
operating, yet we view these as substantial investments in 
finding solutions to our healthcare issues with respect to 
rising healthcare costs, reducing the number of uninsured and, 
indeed, providing better outcomes.
    With these needs in mind, we, along with 100 members of the 
organization, the Friends of AHRQ, recommend an increase in 
funding. It is a modest increase from its current level, which 
has been flat at around $325,000,000 a year, to about 
$360,000,000 for fiscal year 2009. Again, the idea is to 
highlight the funding gap, again to raise, as the Chairman has 
already done, the critical issue of what the costs are of not 
funding these appropriate research services at the appropriate 
levels.
    Taking your cue, another critical agency is the National 
Center for Health Statistics. This is a critical agency in 
terms of collecting data and providing just essential 
information on births, deaths and other basic public health 
statistics. Again, we are asking for you to look seriously at 
increasing the funding for that organization as well.
    As you know, Mr. Chairman, Medicare and Medicaid and SCHIP 
together provide coverage to nearly 100 million Americans, 
comprising 45 percent of America's total healthcare spending. 
It is imperative that we invest now in developing and testing 
new financing mechanisms to improve the cost and quality for 
the elderly, poor and other populations.
    We recommend that you provide at least $45,000,000 in 
discretionary research and development funding to help CMS 
evaluate Federal programs and analyze pay for performance and 
payment methods and improve care models. Such work, we believe, 
will pay dividends as you and other policymakers look to expand 
care and healthcare coverage to all Americans.
    Finally, I would like to discuss NIH as the principal 
funder of health services research, providing $921,000,000 or 
3.3 percent of its entire budget for its work last year. While 
significant, this level is $17,000,000 less than the amount 
invested in the previous year.
    We recommend that at least $1,000,000,000 for NIH health 
services research, which represents 3.3 percent of the nearly 
$31,000,000,000 that the broader health community is seeking 
for NIH.
    In addition, we would hope NIH would increase the 
proportion of health services funding from 3.3 percent to 5 
percent to assure that the discoveries from clinical trials 
that you have heard a lot of today are effectively translated 
into actual health services.
    Mr. Chairman, the accomplishments of health services 
research would not be possible without your leadership and the 
support of this Subcommittee. We view these as critical 
investments in solving the rising costs of healthcare in this 
Country, in dealing with the entitlement crisis, in finding new 
and more effective ways of providing healthcare to all of our 
citizens.
    We respectfully ask that you accept our recommendations, 
recognizing the substantial funding situation that you are 
dealing with, with the White House, for the Federal agencies 
that are funding health services research and health data.
    Thank you for giving me the opportunity to be here today. I 
actually was happy to be the last person testifying here 
because it gave me an opportunity to hear and learn a lot about 
the challenges that we face, not only in solving the healthcare 
cost and quality problem but the challenges in just the basic 
research and investing in disease prevention and disease 
promotion. So, thank you for inviting us to testify.
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    Mr. Obey. Thank you.
    Just two points, you mention that this Country spends more 
than any other country on healthcare. Paul Krugman, in his new 
book, has pointed out that I believe he said almost 30 percent 
of every dollar spent on healthcare in this Country is spent 
not to deliver healthcare but in an effort to deny someone 
healthcare. Given your comment about the cost, I thought we 
ought to put that in the record.
    Secondly, again, in terms of the context, the President's 
budget request for 2008 increased funding for the agency by 
$11,000,000 or 3 percent. In the final 2008 appropriation bill, 
this Committee went a step further and provided a $5,000,000 or 
a 1.5 percent increase above the President. These are all very 
small numbers, but they are very important.
    The President's request this year cuts the 2009 budget by 
$9,000,000 or a 2.7 percent reduction. To me, these 
expenditures are so small, but they are designed to tell us 
what works and what does not, which is fairly important if you 
are going to spend taxpayers' money, I would think.
    To me, to cut this budget is penny-wise and pound-foolish.
    Mr. Simpson. I do not know if I got the message. Did you 
support the President's actual bill?
    Mr. Obey. I did not.
    Mr. Simpson. I am just kidding. As you know, I supported 
your actions to override the President's veto because I think 
it was foolish on the White House's part because this really is 
an investment in the future. I think, quite frankly, we do not 
do enough in healthcare research. We do not do enough in basic 
science research and other research as is necessary in this 
Country.
    But I was just curious. A lot of the organizations and 
groups that have come up today and testified have asked for a 
6.7 percent increase in NIH funding. Do you know where that 6.7 
percent comes from?
    I do not know where they came up with 6.7 percent.
    Mr. Obey. Well, you will have to ask them. My request has 
always been to avoid a specific number like that because it 
creates false expectations.
    Mr. Simpson. Yes. Well, I was curious.
    Mr. Obey. Very frankly, when we passed the bill out of the 
House, there were a number of health organizations who spent 
more time arguing about what little piece of the pie they got 
and did not get than they spent working on the House and the 
Senate to build enough votes to overcome the President's veto.
    Mr. Simpson. That is right.
    Mr. Obey. In the end, we wound up with a bill which was 
below the original House-passed bill. I tried to warn people 
that could happen.
    Mr. Simpson. Well, I was curious. As you know, the VSOs in 
the veterans area come together with kind of a VSO budget that 
they would like to see passed. I was wondering if these groups 
got together and talked about what they think is necessary in 
NIH and stuff. I am not criticizing it or anything.
    If that is where 6.7 percent came from, why is not it 5.5? 
Why not 9.5?
    Mr. Obey. I share their goal.
    Mr. Simpson. As do I.
    Mr. Obey. But the question is under these circumstances, 
what is the best you can do without endangering your ability to 
deliver anything?
    Mr. Simpson. Yes. One of the real things we learned the 
other day, we knew it beforehand, when we went out to NIH. 
Chairman Obey took several of us out there, and we took a tour 
of NIH and some of the institutes out there. They called it the 
doubling of the NIH budget, those years when we attempted for 
five years to double the NIH budget. Now it is the undoubling 
of the NIH budget, quite frankly, because we are losing ground.
    If we had just gone up at a steady rate and had not looked 
at doubling, just gone up at a steady rate, a steady, modest 
rate, and done it over the full period of time, we would 
probably be ahead of where we are not. But we did the doubling 
and then everybody said, okay, that is done.
    Mr. Obey. That is the problem.
    Mr. Simpson. Exactly.
    Mr. Obey. I mean it is appalling to me that we spent the 
money that we spent to map the human genome, and we have made a 
concerted effort to greatly increase the NIH budget while we 
were doing that, and now that we have completed the job, we 
have the keys that can open a lot of doors, but somehow we 
appear not very anxious to go through those doors.
    Mr. Simpson. Exactly.
    Mr. Obey. That just makes no sense to me. After we spent 
all of the money in a preliminary effort to get us into a 
position to really make some progress, now we are saying, well, 
we think we will take the slow train.
    Mr. Simpson. Well, I appreciate your leadership on this 
Committee and particularly in this area, Mr. Chairman.
    Mr. Obey. And I appreciate your support, too.
    Thank you very much. We appreciate your coming.
    Mr. Thorpe. Thanks for having us.

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