[Senate Hearing 109-]
[From the U.S. Government Publishing Office]



 
  DEPARTMENTS OF LABOR, HEALTH AND HUMAN SERVICES, AND EDUCATION, AND 
          RELATED AGENCIES APPROPRIATIONS FOR FISCAL YEAR 2006

                              ----------                              

                                       U.S. Senate,
           Subcommittee of the Committee on Appropriations,
                                                    Washington, DC.

    MATERIAL SUBMITTED BY AGENCIES NOT APPEARING FOR FORMAL HEARINGS

    [Clerk's note.--The Social Security Administration and the 
Railroad Retirement Board were unable to testify and the 
following information was received in support of their fiscal 
year 2006 budget requests.]
    [The information follows:]

                     SOCIAL SECURITY ADMINISTRATION

              Questions Submitted by Senator Arlen Specter
                         human capital planning
    Question. In January 2001, the General Accounting Office identified 
strategic human capital management as a government wide high-risk area. 
What steps are you taking to acquire, develop, and retain an 
appropriate mix of agency staffing/talent, particularly in light of the 
Agency's impending retirement wave? What is the Agency's plan for 
creating an organizational culture that promotes high performance and 
accountability and empowers and includes employees in setting and 
accomplishing programmatic goals? How does the fiscal year 2006 budget 
support these activities?
    Answer. SSA has a long history of successful human capital 
planning. We first analyzed the impact of our impending retirement wave 
in 1998. This prompted development of a Future Workforce Transition 
Plan (FWTP) which laid out the strategies to ensure that a highly 
skilled staff was in place.
    We update our analysis of projected retirements annually and make 
appropriate adjustments to our recruitment, retention and succession 
strategies. We expanded upon the FWTP to publish a comprehensive and 
strategic Human Capital Plan in January 2004. The plan lays out how SSA 
will use human capital to meet the Agency's mission and goals and 
ensure that we have employees in place with the skills necessary to 
continue SSA's tradition of excellent citizen service. Employees across 
the Agency work together to accomplish these initiatives and, as a 
result, SSA received a President's Management Agenda score of ``green'' 
for the Strategic Management of Human Capital in June 2004.
    To date, we have maintained our green status by successfully 
completing planned activities, continuing with initiatives underway and 
adding new ones that will further improve our management of human 
capital.
    Since 2001, we have implemented a new national recruitment strategy 
with the following key elements: (1) an integrated marketing campaign 
with a new SSA brand entitled ``Make a difference in people's lives and 
your own;'' (2) emphasis on the Inter/Intranet; (3) coordinated on-
campus college recruitment; (4) automated staffing/recruiting; (5) 
practical methods for diversity recruitment; (6) streamlined hiring; 
and (7) maximum use of hiring flexibilities. We have expanded on these 
key elements through other key recruitment successes, including the 
release of a National Recruitment Guide to ensure consistency and 
excellence in our recruitment activities and the establishment of 
partnerships with other Federal agencies to assist veterans with 
transitioning to civilian employment.
    We are maximizing the use of technology to improve recruitment and 
hiring. SSA is in the process of transitioning to a new web-based 
staffing automated system. We are also working to improve methods of 
submitting, collecting, and processing electronic job applications. 
Improving the application process in those areas is expected to improve 
the hiring process by encouraging a larger number and more qualified 
applicants to apply for Federal positions and by facilitating more 
timely selections.
    Our recruitment efforts have proven successful in attracting 
quality hires. We hired over 15,000 employees in fiscal years 2001-
2004. For fiscal year 2005, we have hired 2,616 through March 2005. 
This includes employees who were recently hired in support of the 
recent Medicare legislation which will provide drug benefit subsidies 
to the elderly.
    We develop employees from entry-level through the Executive level. 
Our orientation programs for new employees emphasize our organizational 
culture and public service values.
    SSA has received many accolades for its national leadership 
development programs that have often been referred to as the ``best in 
government.'' This reputation is based upon our use of competency-based 
programs that include a rigorous selection process and a variety of 
program features that produce well-rounded graduates. The programs 
include the Senior Executive Service Candidate Development Program for 
executives, the Advanced Leadership Program for middle- and senior-
level employees, the Leadership Development Program for employees at 
the journeyman level, and the Presidential Management Fellows Program 
for entry-level professionals.
    SSA has redesigned entry level training, developing job-specific 
training competencies and delivering related training for about 24,000 
positions in the claims representative, service representative, and 
teleservice representative occupations. In fiscal year 2006, SSA will 
develop competency-based training that will be used for another 4,000 
positions in the benefit authorizer, claims authorizer and technical 
support technician occupations.
    SSA is also delivering training to prepare employees for the new 
Medicare legislation. The intent of this training is to ensure all 
employees understand and can process the workloads associated with the 
new legislation.
    We are also maximizing the use of technology in the training arena 
by implementing a project development plan to migrate to a common, 
government-wide electronic-learning service.
    Our 2-year retention rate for new hires has been gradually 
increasing from 84 percent for 1998 hires to 89.9 percent for 2002 
hires; a rate which is considered outstanding in the private and public 
sectors. We have enhanced our orientation process and are improving our 
exit interview processes to further support our high retention rate.
    We are promoting high performance and accountability by improving 
our performance management systems. We implemented new multi-tiered 
appraisal systems for Senior Executive System employees in October 2002 
and for GS-15s in October 2003. We are further improving our 
performance management systems by implementing a new multi-tier 
performance appraisal model for union-represented employees that, when 
implemented, will differentiate between levels of performance and 
enhance managers' ability to hold employees accountable for results.
    Full funding of the fiscal year 2006 President's budget will allow 
us to continue to carry out our Strategic Human Capital Plan 
activities.

                        DIRECT SERVICE POSITIONS

    Question. What is your plan to increase the number of direct 
service positions, while maintaining appropriate levels of technical, 
policy, and administrative support staff? The Subcommittee is aware 
that SSA met its long-term goal of reallocating 5 percent of 
headquarters positions to direct service in fiscal year 2004. 
Specifically, how was this accomplished? What does the budget assume 
for such redirections in fiscal year 2005 and fiscal year 2006?
    Answer. We met our goal through a combination of redeployments and 
overall attrition in staff components. For example, 71 employees 
transferred from staff components to direct service positions in the 
Office of Central Operations in November 2002. The fiscal year 2006 
budget request assumes no additional redirections for fiscal year 2005 
or fiscal year 2006. The fiscal year 2006 budget request does assume an 
increase in full-time equivalents from fiscal year 2005, attributable 
mainly to the 2,200 direct service employees hired in fiscal year 2005 
to handle workloads related to the new Medicare prescription drug 
program. Although hired initially to deal with this new Medicare 
workload, these employees will be trained on all of SSA's programs so 
they can ultimately help backfill for the 3,000-4,000 employees we lose 
each year due to retirements and resignations.

                 ENRICHMENT OPPORTUNITIES AND LEARNING

    Question. One long-term outcome identified in SSA's Agency 
Strategic Plan is ensuring ongoing enrichment opportunities and 
training. Specifically, how does the fiscal year 2006 budget support 
this long term outcome?
    Answer. SSA is dedicated to improving its training and development 
programs in order to build the skills our employees at all levels need 
to deliver quality customer service in the 21st century's technological 
environment. To fill emerging skills gaps, SSA is focusing on improving 
the training it provides all its employees--from the lowest levels to 
the top. We are using the lessons we learned from ``getting to green'' 
to stay focused on our commitment to improve learning at SSA so all of 
our employees are prepared to support SSA's mission.
    Currently, SSA's Office of Training is moving forward to:
  --Develop and implement a competency-based training approach to 
        ensure that our employees on the front-line doing mission 
        critical work have the skills and knowledge they need to 
        effectively address the concerns of the American public.
  --Ensure that the Agency has the number of well-rounded, competent 
        leaders it needs by implementing a new leadership development 
        strategy that will enhance SSA's nationally acclaimed career 
        development programs.
  --Open up more learning opportunities for SSA's employees by moving 
        from SSA's Online University to the government-wide GoLearn 
        online learning system. SSA employees nationwide will be able 
        to select from over 2,000 courses that are designed to make the 
        most of their potential.
    Of the many influences that are shaping SSA's future, none may be 
more fundamental or influential than the training we provide our 
employees. Our shared learning helps us to forge a sense of common 
purpose nationwide and provides us with the knowledge and skills we 
need to do our jobs. SSA's future success at meeting the public's 
increasingly varied needs depends on our ability to open up learning 
opportunities that make the most of our employees. Because of this, SSA 
is continuing to reassess the needs of its workforce and investing in 
workforce learning and performance for each of our employees and the 
Agency as a whole.
  --SSA provided an average of 48 hours of training per employee over 
        SSA's Interactive Video Teletraining (IVT) network and Online 
        University. SSA employees were particularly interested in new 
        IVT broadcasts that covered the new Medicare policy, security 
        in SSA's offices, and the growing use of the Internet.
  --The Office of Training is continuing to work with Operations to 
        redesign the training for new or recently promoted employees in 
        our mission critical positions. In redesigning our training, 
        SSA has been using results from private sector source surveys 
        and studies to develop a competency-based training program. 
        This approach provides our students with the knowledge, skills, 
        and abilities they need to do their jobs in an environment that 
        is becoming increasingly automated.
    By the end of last year, the entry-level training for Title II and 
Title XVI Claims Representatives (CRs), Service Representatives (SRs), 
and Teleservice Representatives were redesigned to reflect this 
competency-based approach.
    Redesigned training lessons improve the way our new employees learn 
their jobs by integrating information regarding SSA's programs and 
policies with structured off-air activities and on-the-job-training. 
This plays a key role in helping new employees master the technology 
and automated processes that are a critical element of today's SSA work 
environment. Mentors help guide and support students as they develop 
new skills by practicing on SSA computer systems, taking part in role-
playing, and having on-the-job experiences that will serve them well 
when they take on their new roles full time.
    The Office of Training has also been developing training for 
specific groups of employees. Working with Operations' offices across 
the country, they have completed the development of competency-based 
training for Benefit Authorizers, Claims Authorizers, and Technical 
Support Technicians in the Program Service Centers by 2006. They have 
also improved fundamentals training for employees who do not provide 
direct services to the public. This training gives general information 
about the Title II and Title XVI programs and strengthens our 
commitment to work purposefully together in shaping and managing these 
programs.
    Because of the continuing changes in the disability programs, SSA 
is working to update and expand the disability training materials for 
new or recently promoted disability adjudicators. SSA also provides a 
significant amount of training for OHA employees who process disability 
claims at the appeals levels. Topics that SSA provides on its IVT 
network focus on OHA's Case Processing Management System, Speech 
Recognition Software, Digital Recording, Dismissals, Remands, and 
Docket Management.
    The Office of Training is evaluating the training needs of SSA's 
Executive Officers and expects to develop a core curriculum for that 
position by the end of the fiscal year.
    Technology has also played an important role in SSA training.
  --During fiscal year 2004 and into fiscal year 2005, Social Security 
        continued to move forward towards realizing its vision of 
        providing IVT nationwide. By the end of 2004, employees in more 
        than 100 additional offices were linked to the IVT network. 
        Today, over 98 percent of Agency and Disability Determination 
        Service (DDS) employees have access to IVT.
  --The IVT network continues to play an important role in ensuring 
        that our employees learn what they need to know, when they need 
        it. The first part of the Medicare Part D subsidy training on 
        policy was developed and successfully delivered over the IVT 
        network. The second part of this training, which will cover 
        systems and subsidy changing events, is being readied for 
        delivery this May.
  --SSA is working behind the scenes to improve the delivery of its IVT 
        broadcasts. With the conversion of the headquarters' practice 
        studio, SSA now has a fully functional digital broadcast 
        facility in Baltimore that helps us improve our ability to get 
        up-to-date programs to our employees. SSA is also upgrading its 
        other six broadcast facilities and enhancing our automated 
        scheduling and evaluation procedures as well in an effort to 
        better ensure that our IVT programs reach the employees who 
        need them.
  --SSA is expanding the benefits and values of online learning through 
        the SSA GoLearn training site. SSA GoLearn replaces SSA's 
        current Online University (OLU). All employees and their 
        managers will have unprecedented opportunities to take over 
        2,000 courses at their workstations or at home, at no cost to 
        them or their offices. Each employee will learn at his or her 
        own pace and be able to select courses that will help them 
        learn and perform better or become eligible for other, more 
        rewarding work. Successful learners will automatically get 
        credit for completed courses on their personnel records, 
        without filling out any paperwork.
  --IVT provides disability policy training to SSA and the DDS 
        employees. IVT broadcasts provide these employees with help in 
        handling a host of difficult technical issues, including 
        electronic disability, evidence in childhood cases, disability 
        fraud detection, and disability onset. SSA also broadcasts 
        vocational and adjudicative tips in case development and 
        processing for employees who handle SSA's disability workloads.
    Since 2004, SSA has ensured that it has the talent it needs to lead 
the Agency by supporting the expansion of the national leadership 
development programs.
  --60 employees have been selected to take part in the Leadership 
        Development Program (LDP) that will begin mid-year. The GS-9 
        through GS-11 employees who will participate in the program 
        will have the opportunity to move forward in the Agency by 
        making the most of the training and rotational assignments 
        available to them in the 18-month program.
  --The Senior Executive Service Candidate Development Program (SES 
        CDP) is expected to be announced later this year. The SES 
        candidates are expected to begin their program in 2006. In 
        order to develop the qualifications they need to become the 
        government's top executives, SSA's SES candidates will take a 
        variety of Agency rotational assignments and some will spend 
        time at other Federal agencies to prepare them to successfully 
        lead change within the Federal Government.
  --Approximately 26 top graduate students are expected to be selected 
        at the end of this calendar year for the Presidential 
        Management Fellows (PMF) 2-year development program.
    SSA is continuing to seek new ways to ensure that the Agency has 
the leadership it needs to succeed in the 21st century. Earlier this 
year, a national workgroup of manager and trainers in headquarters and 
from the field worked together to establish a new strategy for 
developing leaders at SSA. The Office of Training is getting nationwide 
comments on the strategy which is designed to foster competencies that 
leaders and managers need to effectively manage people, achieve 
results, and promote performance management. SSA anticipates 
implementing this new, improved approach to leadership by the end of 
this year.
    Full funding of the fiscal year 2006 President's budget request for 
SSA will permit us to continue to carry out these training and 
development programs.

                       INITIAL DISABILITY CLAIMS

    Question. Over the period fiscal year 2000-fiscal year 2004, 
initial disability claims pending have increased by more than 16 
percent and now total more than 620,000, despite an increase in agency 
resources from $6.6 billion to $8.3 billion, or almost 26 percent. 
Please provide a breakout of DDS (Disability Determination Service) 
resources (dollars and staffing) over this period. What explains this 
growth in backlogs, despite increasing Agency resources? What specific 
actions are underway or planned in fiscal year 2005 and fiscal year 
2006 to ensure more timely adjudication of disability cases and more 
cost-effective expenditure of agency resources?
    Answer. The growth in initial disability claims pending is the 
result of a dramatic growth in initial claims receipts. Over the fiscal 
year 2000-2004 period, DDS initial claims receipts increased almost 24 
percent.
    SSA responded within available resources to this increase in 
receipts by: (1) increasing DDS resources; (2) initiating fewer 
continuing disability reviews in fiscal year 2003 and fiscal year 2004 
and redirecting those resources to process initial claims; and (3) 
improving productivity in the DDSs. In spite of these efforts, we were 
unable to keep up with the growth in receipts.
    In fiscal year 2005, we implemented a plan to lower initial pending 
levels to 592,000 by the end of the fiscal year. Thus far this year, we 
have succeeded in lowering pendings to 608,000. To help achieve the 
pending goal, increased funding was provided to the DDSs, and DDSs were 
authorized additional hiring and increased overtime. In addition, where 
requested and needed, Federal assistance in case processing is being 
provided to some DDSs. In fiscal year 2006, the President's budget 
request reflects productivity and processing time improvement for the 
DDSs, mainly through an electronic disability claims process (eDib).
    Despite not receiving the full President's budget request for the 
last two fiscal years, my Service Delivery Budget goal is still to 
reduce disability claims pending to 400,000 by 2008. To achieve this, 
we need the Committee's support, including full funding for the 
President's budget request of $9.403 billion for SSA's administrative 
expenses.
    A breakout of DDS resources (dollars and staffing) for fiscal year 
2000-fiscal year 2004 is provided in the chart below.

                          [Dollars in millions]
------------------------------------------------------------------------
                     Year                        Worrkyears     Amount
------------------------------------------------------------------------
2000..........................................       14,231       $1,461
2001..........................................       14,397        1,513
2002..........................................       14,947        1,588
2003..........................................       14,700        1,593
2004..........................................       14,772        1,672
------------------------------------------------------------------------

                        EDIB AND IMPLEMENTATION

    Question. The Government Accountability Office (GAO) added Social 
Security's disability programs to its list of High-Risk programs. SSA's 
fiscal year 2006 budget request supports complete implementation of an 
electronic disability process--eDIB--as a means to improving the 
timeliness of and efficiency associated with disability decision. How 
much funding is included in the fiscal year 2006 request to support the 
eDIB? In several recent reports, GAO has raised concerns about the 
cost-benefit analysis, risk assessment and mitigation, and 
implementation plan for this initiative. Given the difficulties 
experienced in previous attempts to improve this process, what 
contingencies are in place to deal with challenges in implementing 
eDIB? Specifically, what resources are available and supports in places 
to deal with any potential implementation challenges?
    Answer. SSA has requested approximately $50 million in fiscal year 
2006 for information technology (IT) hardware/software services, as 
well as internal IT staff to support eDib.
    The most important thing to note is that eDib functionality was 
implemented by January 2004 and has been working effectively since that 
time. This includes the Internet Disability Report, the Electronic 
Disability . . . Collect System (EDCS), new hardware and software for 
the State legacy systems, the Document Management Architecture (DMA), 
and the Office of Hearings and Appeals (OHA) Case Process Management 
System (CPMS). We are well on our way to the completion of the eDib 
rollout to all of the Social Security and State offices.
    SSA has put many controls and resources into the process to assure 
our success as we implement these features, as we build upon them, and 
as we continue to roll-out full electronic folder capability across the 
nation to all components involved in processing the disability 
workload. This includes regular high level monitoring of the project 
status. There is frequent contact among all of the SSA components 
involved in eDib including staff from systems, policy and operations. 
SSA also deploys policy, systems, workflow, and usability experts to 
field offices, Disability Determination Service (DDS) offices, OHA 
offices, and Office of Quality Assurance (OQA) sites to learn first-
hand about the issues faced by staff working with the eDib applications 
and works to resolve any problems quickly.
    In addition, SSA is conducting an Independence Day Assessment (IDA) 
before moving a DDS, OHA, or OQA office to a fully electronic process 
(i.e., new cases can be processed in the electronic folder with no new 
paper folder created). This assessment ensures that everything is 
working properly before going fully electronic by validating the 
business process, the systems functionality, and other processes and 
procedures. The assessment also makes sure the electronic folder meets 
all documentation standards set forth by SSA and the National Archives 
and Records Administration (NARA).
    SSA has assigned an ``integrator'' for each State. The integrator 
is responsible for tracking the progress of testing and implementation 
in each State and is the single point of contact for the DDS should 
they encounter issues. The integrator is responsible for identifying 
the component/person that can address and resolve each issue. This has 
proven to be a very successful model for eDib implementation. In 
addition, each DDS receives onsite support by their legacy system 
vendor and SSA Systems staff during testing and training, as well as 
during the first week of production.
    We have placed a strong focus on risk management. We hired a 
contractor to work with our Project managers to develop Risk Management 
Plans for each of the major eDib projects. We have assigned each of the 
risks to the appropriate Project Managers for their use in addressing 
the risks. Our contractor updates these plans with the Project Managers 
to assure continued monitoring and mitigation of risks.

                      DISABILITY REDESIGN PROCESS

    Question. According to SSA's service delivery assessment of the 
disability process completed in 2002, persons pursuing their disability 
claims through all levels of Agency appeal wait an average of 1,153 
days for that final decision. Due to backlogs, cases that go through 
all levels of appeal spend nearly 50 percent of the time (535 days) 
waiting for SSA action. Commissioner, you have proposed an ambitious 
redesign concept for the disability determination process, and also 
have established a date of January 2006 as the earliest major changes 
in the disability determination process may become effective. 
Improvements to this process are needed, as the current process takes 
too long. What process will you follow for making final decisions about 
the redesign plan and what is the timeline for making those decisions? 
How much funding is proposed in the FY'06 budget associated with 
redesign implementation (OB) and what redesign activities do they 
support?
    Answer. Improving the disability process is one of my highest 
priorities as Commissioner. I am close to making the final decisions 
that will convert my new approach for improving disability 
determinations into a proposed regulation which will provide the right 
decision as early in the process as possible and create work 
opportunities for people with disabilities.
    When I announced my new approach, I stressed that the changes 
envisioned were predicated on successful implementation of our 
electronic disability system (which we call eDib) and that it was 
critically important to listen to the ideas of all interested parties 
as we developed the disability determination improvements.
    I am pleased to report that our State-by-State roll out of eDib is 
on track. All of our field offices across the nation are now using the 
Electronic Disability Collect System (EDCS) that initially creates the 
electronic folder. This system was implemented at the first State 
Agency Disability Determination Services (DDS) in January 2004, and 
additional DDSs have continued to implement eDib ever since. Currently, 
eDib has been rolled out in all States except North Dakota, Alaska, 
Nebraska, New York and Washington, DC. With the exception of New York, 
all remaining States will be rolled out by the end of June 2005. At the 
same time, our Office of Hearings and Appeals (OHA) has begun using the 
new Case Processing and Management System (CPMS), which is a new 
software for processing cases and managing OHA office workloads. CPMS 
will enable OHA to work with the electronic file.
    In view of the complexity and importance of the disability 
programs, my second strategy, having an open process, has been 
invaluable in my decision making. Last year, I launched a massive 
outreach effort to obtain and give thoughtful consideration to all 
comments on the current system and our proposed improvements. I created 
the Disability Service Improvement Staff within my immediate office to 
coordinate this effort and I have been taking a personal role in 
listening to those involved and interested in the disability process. I 
have personally participated in more than 60 meetings with more than 40 
organizations--both within SSA and outside of the Agency. As I have 
been making decisions, I have carefully considered hundreds of views 
and suggestions received from the Congress, the general public, and 
many public and private sector groups and individuals.
    With respect to fiscal year 2006 funding, I anticipate that our 
plan to roll out the new process region by region will enable us to 
implement these improvements without seeking additional resources 
beyond those the President requested for SSA from the Congress for 
fiscal year 2006.

                        SPECIAL DISABILITY CASES

    Question. The Subcommittee is aware that SSA's latest plan is to 
complete the entire review of the special disability cases by 2010. 
What specifically is the Agency's plan for accomplishing this goal and 
how much funding will be required to review all of these cases?
    Answer. As of fiscal year 2004, we have processed 96,600 cases of 
the estimated 300,000 individuals eligible for Supplemental Security 
Income (SSI) who are also entitled to (but not receiving) Social 
Security Disability Insurance benefits. In fiscal year 2005, we plan to 
process 30,500 cases at a cost of $78 million. The fiscal year 2006 
budget includes $79 million for the processing of 30,600 special 
disability cases.
    Through fiscal year 2004, SSA spent approximately $175 million on 
the processing of Special Disability cases. Assuming full funding of 
the President's fiscal year 2006 budget request, as well as sufficient 
funding in future years to support continued processing of this 
workload, we expect to complete case processing by September 2010 at an 
administrative cost of about $630 million.

                                  CDRS

    Question. The Subcommittee notes that one of the Agency's Long-Term 
Outcomes under its Stewardship goal is to remain current with 
Disability Insurance CDRs and to regain currency with SSI CDRs. What 
are the performance outcomes the Agency needs to achieve during the 
years fiscal year 2005 through fiscal year 2009 to meet this long-term 
outcome measure? What is SSA's plan for meeting this goal? What best 
practices did SSA develop during the period when Congress provided 
special funding that are being applied to the process currently that 
will ensure the most cost-effective expenditure of LAE resources? How 
will the Agency determine an appropriate balance between Continuing 
Disability Reviews processed through mailers and those cases requiring 
a full medical review?
    Answer. To remain current in Title II CDRs and achieve currency in 
Title XVI CDRs by the end of fiscal year 2009, SSA would need to 
process over 7.5 million CDRs, including those that will come due 
during the period fiscal year 2006-fiscal year 2009 and CDRs that we 
have been unable to initiate through fiscal year 2005 because of 
funding limitations. While we are updating our CDR plan to reflect more 
current information, including the latest projections of initial 
disability claims receipts, we do not believe that we will be able to 
achieve Title XVI currency until after fiscal year 2009.
    The President's fiscal year 2006 budget includes budget enforcement 
legislation that would place caps on net discretionary budget authority 
and outlays. The legislation would permit adjustments to these caps for 
spending above a base level for several government-wide program 
integrity activities, including SSA's CDRs. The amount of the 
adjustment for CDRs is $189 million, which means if the President's 
proposal is enacted, $189 million of SSA's budget request would not be 
counted towards the overall cap on discretionary budget authority.
    Congress provided SSA with special funding for CDRs, outside the 
discretionary budget caps, from fiscal year 1996 through fiscal year 
2002. During this period and continuing, SSA has worked continuously to 
improve the efficiency and effectiveness of the CDR program. The 
results are borne out by the following passage from SSA's most recent 
Annual Report to Congress on CDRs covering fiscal year 2003:

    ``SSA's CDR process has consistently yielded a favorable ratio of 
savings to costs in the Disability Insurance (DI) program. Prior to the 
implementation of the current process for case selection, it was 
estimated that we were achieving $3 in DI program savings for each $1 
in administrative costs invested in full medical CDRs. The addition of 
the mailer process beginning in 1993 was estimated to result in a 
doubling of this ratio to approximately $6 to $1.
    ``Actual results to-date for the period during which supplemental 
administrative funding has been available have been even better than 
anticipated. During this period, the number of cases processed has 
expanded significantly, especially in the review of SSI cases. This 
expanded process has yielded savings-to-cost ratios for the seven 
fiscal years 1996-2002 averaging roughly $10.3 to $1.''----From SSA's 
Annual Report of Continuing Disability Reviews, fiscal year 2003; 
published October 27, 2004.

    The breakthrough innovation was the implementation of a statistical 
profiling/mailer process in 1993 which permitted SSA to reliably 
identify large cohorts of beneficiaries with a low probability of 
cessation due to medical improvement for whom the expensive full 
medical review process is not required. The CDR statistical scoring 
models are a series of mathematical formulas designed to predict the 
likelihood of medical improvement for each Retirement Survivors 
Disability Insurance (RSDI) beneficiary and SSI adult recipient. Based 
on the scores generated by these models and a statistical threshold 
which determines whether a mailer or full medical examination would be 
the most cost effective type of review to perform, cases scoring below 
the threshold are targeted for CDR mailers, and those scoring at or 
above the threshold are targeted for full medical reviews.
    During the early years of the special funding we focused primarily 
on improving internal systems and operational processes needed to 
reliably control and track more than a million reviews annually. SSA 
engaged a statistical contractor in fiscal year 2000 to improve the 
performance of the statistical modeling. Since then, the contractor has 
updated and expanded the data and mathematical formulas upon which the 
statistical scoring is based.
    SSA has been able to implement several processing improvements 
based on research findings by our statistical contractor. Since fiscal 
year 2002, SSA has been able to use the profiling/mailer process to 
identify RSDI disabled workers with a statistical model score 
signifying ``medium'' probability of medical improvement who do not 
require a full medical review. The process was extended to SSI disabled 
adult beneficiaries in fiscal year 2005. In fiscal year 2003, we were 
able to apply Medicare usage data to identify additional RSDI disabled 
workers with a low or medium probability of medical improvement. 
Altogether since fiscal year 2002, these innovations have avoided well 
over 500,000 full medical reviews, more than $300 million in 
administrative costs, and significantly reduced unnecessary burden on 
our most severely disabled beneficiaries.
    We continuously monitor the performance of the statistical models 
and can readily make enhancements that are suggested. In addition, the 
models have been scrutinized by several teams of auditors and found to 
be accurate and reliable. And, together with our statistical 
contractor, we continue to look for additional processing efficiencies 
that can be implemented in the future.
    With respect to determining the appropriate balance between CDRs 
processed through mailers and those performed as full medical reviews, 
this decision is determined through the CDR statistical scoring models. 
For cases with medical re-examinations due to be scheduled in the 
particular fiscal year, we begin releasing CDR mailers and full medical 
reviews at the start of the fiscal year, and continue the release 
process throughout the year, with the goal of releasing all cases due 
for a CDR in that year.

                             TICKET TO WORK

    Question. According to the ``Justification of Estimates for 
Appropriations Committees'' for the fiscal year 2006 budget request, 
the Ticket to Work Program will be expanded to all States and U.S. 
Territories by September 2004. Specifically, how much funding is 
available within the fiscal year 2006 request for the Limitation for 
Administrative Expenses account to support implementation of the Ticket 
to Work program and what activities are supported? How much funding 
from other sources within the fiscal year 2006 budget request support 
the program?
    Answer. The administrative budget for fiscal year 2006 includes 
$39.4 million for Return to Work activities. This funding is for 
Benefits Planning and Assistance Cooperative Agreements ($23 million), 
Protection and Advocacy grants ($7 million), and the Program Manager 
Contract ($9.4 million).
    The following chart summarizes other objects administrative costs 
of the Ticket to Work program by major category:

                             RETURN TO WORK
                        [In millions of dollars]
------------------------------------------------------------------------
                                                       Fiscal year
                                               -------------------------
                                                    2005     2006 budget
                                                  estimate    submission
------------------------------------------------------------------------
Benefits Planning & Assistance Cooperative             23.0         23.0
 Agreements (including training and technical
 assistance)..................................
Protection & Advocacy Grants..................          7.0          7.0
Program Manager Contract......................      \1\ 6.9          9.4
                                               -------------------------
      Total...................................         36.9        39.4
------------------------------------------------------------------------
\1\ The fiscal year 2005 contract is only for nine months. The contract
  is being re-competed for fiscal year 2006. The President's budget
  estimates $9.4 million for fiscal year 2006, the same as the full year
  cost for fiscal year 2004.

    Benefits Planning and Assistance and Cooperative (BPAO) Agreements 
are intended to ensure that community based benefits planning and 
assistance outreach services are available across the United States and 
its territories. The law authorized $23 million to be appropriated each 
year and the Social Security Protection Act of 2004 (Public Law 108-
203) extended this authorization through 2009.
    The Protection and Advocacy (P&A) grants are used to provide advice 
to beneficiaries and to provide an avenue for resolving disputes. The 
Social Security Protection Act of 2004 also extended authorization to 
provide funding for P&A grants through fiscal year 2009. The budget 
continues funding of $7 million for P&A grants in fiscal year 2005 and 
fiscal year 2006.
    The Program Manager Contract provides funds to an outside 
contractor to help SSA manage the Ticket to Work program. The contract 
will be re-competed and the required funding has been estimated to be 
$9.4 million for fiscal year 2006.
    The budget also includes program funding to cover outcome and 
milestone payments made to Employment Networks (ENs) under the Ticket 
to Work program. State Vocational Rehabilitation (VR) agencies have the 
option, on a case-by-case basis, to elect to be paid under the 
reimbursement payment system or as an EN. The Beneficiary Services 
Budget for fiscal year 2006 includes $262 million to cover 
reimbursement payments to VR agencies and Ticket payments to ENs (see 
chart).
    The chart below summarizes the estimated Beneficiary Services 
payments:

                                          BENEFICIARY SERVICES PAYMENTS
                                            [In millions of dollars]
----------------------------------------------------------------------------------------------------------------
                                                                        OASDI                      SSI
                                                             ---------------------------------------------------
                                                                     Fiscal year               Fiscal year
                                                             ---------------------------------------------------
                                                                  2005         2006         2005         2006
----------------------------------------------------------------------------------------------------------------
Reimbursement Payments (VR).................................           80          104           52           67
Ticket Payments (EN)........................................           25           54           25           37
                                                             ---------------------------------------------------
      Total Payments........................................          105          158           77          104
----------------------------------------------------------------------------------------------------------------

                      DISABILITY PROGRAM NAVIGATOR

    Question. How has SSA collaborated with other federal agencies and 
partners to increase the work opportunities of individuals receiving 
Social Security and SSI disability payments and what resources are 
included within the fiscal year 2006 budget request to carry out such 
activities? Specifically, what has been the experience in increasing 
work opportunities through the Disability Program Navigator housed in 
One Stop Centers and the Area Work Incentive Coordinators? Why is 
funding for the Disability Program Navigator position being 
discontinued in 2005?
    Answer. On September 30, 2002, SSA and DOL entered into an 
interagency agreement to jointly fund a two-year pilot and evaluation 
of a new position within the One-Stop Career Center system, the 
Disability Program Navigator (DPN). This funding, in the form of 
cooperative agreements, was distributed to 14 States in fiscal year 
2003. A primary objective of the Navigator is to increase employment 
and self-sufficiency for individuals with disabilities by linking them 
to employers and by facilitating access to programs and services that 
will enable their entry or reentry into the workforce.
    SSA and DOL funded the DPN's for a second year which will support 
the project through June 2005. During the second year of this joint 
initiative, Navigators experienced increased activity in the area of 
relationship building within the One-Stop Center as well as with 
employers, Vocational Rehabilitation agencies, Benefit Planning, 
Assistance and Outreach (BPAO) providers, and SSA Area Work Incentive 
Coordinators (AWIC). Evaluation survey data is currently being 
collected and, based on the results, SSA will make a decision regarding 
funding for an additional year.
    The SSA AWICs are the Agency focal point for public information 
outreach and education efforts for the Ticket to Work program. The 
fifty-five nationwide AWICs work closely with the external Ticket to 
Work partners, such as Protection and Advocacy representatives, BPAO 
representatives, Employment Networks (ENs), Disability Program 
Navigators, Vocational Rehabilitation and other disability advocates. 
In some regions AWICs are included in regional training events with the 
BPAOs and have partnered with Maximus to provide training to the ENs. 
AWICs, Plan for Achieving Self-Support (PASS) specialists and SSA 
regional office staff participate in the training and refresher 
training sessions.
    In addition, SSA has entered into a number of interagency 
agreements and cooperative agreements which are focused on increasing 
work opportunities for individuals receiving disability benefits.
    SSA has entered into a $100,000 interagency agreement with HHS' 
Office of the Assistant Secretary for Planning and Evaluation (ASPE) to 
subcontract the evaluation of the Florida Freedom Initiative (FFI). The 
FFI is an expansion of a Real Choice Systems Change grant from the 
Centers for Medicare and Medicaid Services (CMS), which is targeted to 
a subpopulation of participants in the section 1115 waiver 
demonstration called Consumer-Directed Care Plus. This subpopulation 
consists of adults with mental retardation/developmental disabilities. 
In addition to the financial commitment to the evaluation of the FFI, 
SSA will be waiving certain SSI and SSDI program rules for FFI 
participants to test whether the combination of Social Security and CMS 
waivers fosters greater self-sufficiency among demonstration 
participants.
    SSA's Youth Transition Demonstration (YTD) consists of seven 
cooperative agreements in six States (California, Colorado, Iowa, 
Maryland, Mississippi, and New York). The goal of these cooperative 
agreements is to find more effective ways to enable youth who receive 
SSI and SSDI as well as those who are at risk of receiving these 
benefits, to transition successfully to work or post-secondary 
education and ultimately to maximize their economic self-sufficiency. 
These seven cooperative agreements were awarded September 30, 2003 for 
up to five years. The latest budget estimate for fiscal year 2006 
includes $11.8 million for funding the demonstration projects, 
evaluation and technical assistance. These partners are collaborating 
at the State level with the Vocational Rehabilitation Services, 
Department of Education, Department of Labor One Stop Centers as well 
as other State and local agencies.
    Since 2001, SSA has been working under an Interagency Agreement 
with DOL's Office of Disability Employment Policy (ODEP) to promote 
SSA's Ticket to Work Program within DOL's ``Employer Assistance 
Referral Network'' (EARN). DOL has incorporated Ticket to Work into a 
specialized unit of EARN called ``Ticket to Hire'' (TTH). EARN's 
primary purpose is to provide employers with a one-stop service to help 
them locate and recruit skilled candidates with disabilities for jobs. 
TTH matches employers' job openings with qualified, job-ready 
candidates from the Ticket to Work Program. Presently, there is 
$600,000 budgeted for the continuation of this Interagency Agreement 
for fiscal year 2006.

                              OHA HEARINGS

    Question. Over the period fiscal year 2000-fiscal year 2004, the 
number of social security hearings pending have increased by 90 percent 
to more than 590,000, despite an increase in agency resources from $6.6 
billion to $8.3 billion, or almost 26 percent. Pending hearings grew by 
nearly 80,000 during the last fiscal year and the average processing 
time increased by almost 14 percent, despite the provision of 
additional staff support to OHA and the hiring of 103 administrative 
law judges. Please provide a breakout of Office of Hearings and Appeal 
resources (dollars and staffing) over this period. What accounted for 
this growth in backlogs, despite increasing agency resources? What 
actions are underway or planned in fiscal year 2005 and fiscal year 
2006 to ensure more timely dispositions and more cost-effective 
expenditure of agency resources?
    Answer. The inability to hire ALJs between fiscal year 2001 and 
fiscal year 2004 resulted in increased cases pending, even though we 
were able to hire 103 ALJs in fiscal year 2004. This ALJ shortage, 
along with a 14 percent increase in case receipts during the same time 
period, has also increased processing time. OHA has hired an additional 
100 ALJs during fiscal year 2005, and anticipates hiring additional 
ALJs during fiscal year 2006 which will, when these ALJs are fully 
trained, facilitate case processing. Other actions being implemented to 
decrease processing time include the:
  --development of File Assembly Units for assembling files for 
        hearings;
  --establishment of a Centralized Screening Unit which reviews and 
        prepares cases for potential On-The-Record Decisions;
  --implementation of various initiatives at the hearing level to 
        expedite the issuance of decisions. These include the 
        following: screening cases for on-the-record allowances; 
        issuance of fully favorable decision by the ALJ at the hearing 
        (bench decisions); providing an easily prepared decision format 
        for ALJ's to prepare decision findings; and
  --electronic developments such as eDib, the Digital Recording 
        Acquisition Program and the Case Processing Management System 
        (CPMS), are expected to expedite case processing and tracking.
    Despite not receiving the full President's budget request for the 
last two fiscal years, my Service Delivery Budget goal is to eliminate 
the hearings pending backlog by 2010. To achieve this, we need the 
Committee's support, including full funding for the President's budget 
request of $9.403 billion for SSA's administrative expenses.
    The breakout of OHA's resources (dollars and staffing) over the 
period covering fiscal year 2001 through fiscal year 2004 is as 
follows:

                          [Dollars in millions]
------------------------------------------------------------------------
                     Year                        Workyears      Amount
------------------------------------------------------------------------
2001..........................................        7,945       $692.8
2002..........................................        8,049        751.1
2003..........................................        7,903        815.7
2004..........................................        8,204        867.0
------------------------------------------------------------------------

                              HIRING ALJS

    Question. What is SSA's plan for hiring Administrative Law Judges 
in fiscal year 2005 and fiscal year 2006? How does the fiscal year 2006 
budget request support continued improvement in Administrative Law 
Judge productivity, one way to help reduce the growing average 
processing time for hearings, which is up 31 percent from fiscal year 
2000 to fiscal year 2004? The Committee is aware of the more than 100 
day decrease in average processing time for hearings associated with 
the use of the video teleconferencing capability. What are the savings 
associated with the expansion of these facilities proposed in the 
fiscal year 2006 budget request?
    Answer. OHA hired 100 ALJs for fiscal year 2005 and plans to hire 
additional ALJs in fiscal year 2006 depending on the level of funding 
available. After the nine-month learning curve, we expect that the 
increase in ALJ resources will help reduce the hearings backlog, and as 
a result, reduce the average processing time.
    Including the 80 additional sites installed this fiscal year, there 
now are a total of 240 video teleconferencing sites in operation. We 
have conducted nearly 12,000 video hearings this fiscal year through 
April compared to 4,000 through April of fiscal year 2004. Video 
hearing usage contributes to ALJ productivity improvements because 
fewer hearings are postponed, ALJ travel is decreased, and expert 
resources are more accessible.

                OHA'S CASE PROCESSING MANAGEMENT SYSTEM

    Question. The new Office of Hearings and Appeals Case Processing 
Management System was scheduled to be completed by September 2004. What 
training resources are being expended to support its successful 
implementation? What does the fiscal year 2006 budget assume about 
savings related to this new system in fiscal year 2005 and fiscal year 
2006?
    Answer. The Case Processing Management System (CPMS) conversion 
began in May 2004 and was completed in August 2004. The following 
training resources supported successful implementation of the Case 
Processing Management System (CPMS):
  --CPMS training began in April 2004 and ended in July 2004;
  --CPMS training took place ``onsite'' at each hearing office (HO);
  --CPMS training was performed over a 40-hour week;
  --Training was broken into several categories, general training for 
        all staff then job specific training for each job type;
  --The on-site trainers were in the HO to help with the conversion of 
        all Hearing Office Tracking Systems data to CPMS;
  --The trainers remained onsite the week after training to address any 
        CPMS issues that arose; and
  --Further support has been provided after the training was completed:
    --A CPMS help desk in Falls Church is now maintained full-time;
    --CPMS training manuals have been made available on the OHA's 
            website;
    --CPMS training material is on the OHA Website;
    --Continual updates are made to the training materials on the 
            website;
    --Net meetings are conducted with HO's on the use of CPMS; and
    --A series of three Interactive Video Teletraining sessions on the 
            use of CPMS were completed in March 2004.
    No specific savings were associated with implementation of CPMS. 
However, the system is an essential element for implementation of the 
electronic folder process at the hearings level and will assist us in 
our plan to achieve an annual productivity improvement of 2 percent.

                      ELECTRONIC SERVICE DELIVERY

    Question. Given the focus SSA has placed on electronic service 
delivery as a means of providing appropriate service to growing 
workloads, how is the agency monitoring electronic service delivery use 
and experience to alter and build its electronic service delivery 
infrastructure in a secure and user-friendly way?
    Answer. E-Government services within SSA are maturing as a service 
delivery alternative to face-to-face contact, mail, and telephone. 
Substantial investments in infrastructure have been made with the 
expectation that electronic services will continue to grow and become a 
viable, efficient channel for the delivery of SSA's services. In fiscal 
year 2004, over 611,000 electronic entitlement and supporting actions, 
i.e., applications, Medicare replacement cards, change of address, 
etc., were processed. This represents an increase of 179 percent over 
the fiscal year 2002 baseline.
    Electronic services are monitored using management information 
data. This data is analyzed to identify usage trends and to determine 
the level of resources required for these workloads. Customer feedback 
using email, surveys and telephone calls are additional ways to monitor 
usage.
Customer Feedback
  --We have general feedback mechanisms on most web-pages that allow 
        customers to send us their comments or complaints via email.
  --Some on-line applications on the SSA web site also allow general 
        customer feedback through the use of surveys. In addition, SSA 
        has incorporated several American Customer Satisfaction Index 
        (ACSI) surveys on its web site. Sponsored by the Department of 
        the Treasury's Federal Consulting Group, ACSI surveys use a 
        standardized set of questions to measure user satisfaction.
  --SSA's Office of Quality Assurance uses telephone surveys to measure 
        customer satisfaction with the Agency's programs, including 
        services available from the web site.
  --SSA subscribes to demographic data services that allow us to 
        identify who is visiting the SSA site, from where, how long 
        they stay, how many pages they visit, etc. This data helps us 
        identify both popular and problem pages/services on the web 
        site, and to focus marketing of the web site and its services.
    Question. What new electronic services will be supported by the 
fiscal year 2006 budget and how will current services be improved to 
enhance user experience and Agency efficiency?
    Answer. The following services will be supported:
  --SSA's Internet Change of Address application has been enhanced to 
        allow access through Knowledge Based Authentication in addition 
        to the pin/password access.
  --Speech technology provides citizens with the option to use 
        automated telephone applications on the National 800 Number 
        Network to access claims, benefits and related programmatic 
        information.
  --Last year, we completed speech-enabled automation of the 
        transcription process over the National 800 Number Network. 
        Prior to this conversion, callers left a message which was 
        manually transcribed by SSA employees. Now callers hear a 
        message confirming that their request was received and is being 
        processed. If the request was not successful, the caller is 
        directed to an agent for assistance.
  --SSA's Electronic Wage Reporting initiative encourages employers to 
        report their employees' wages electronically rather than via 
        paper, magnetic tape or diskettes/CD ROMs. SSA offers online 
        assistance and staffs an Employer 800 Number to provide 
        information and technical support to employers. At least 70 
        percent of all W-2s will be filed electronically in fiscal year 
        2006, resulting in WY savings for the Agency and in more 
        accurate, timely postings to the Master Earnings File.
  --The Electronic Special Redetermination Mailer is an approved 
        project in the Agency IT Systems Plan fiscal year 2005-2006. 
        Under this project, High Error Profile (HEP) redeterminations 
        will be processed using a new, expanded redetermination mailer 
        that will be scanned in the Office of Earnings Operations 
        (OEO). Mailer responses will be extracted electronically and 
        compared to the Supplemental Security Record, and decision 
        logic will be applied which clears cases or refers them for 
        manual review/exception resolution in OEO or the Field Offices. 
        Testing of the electronic special mailer is planned for April 
        2006 with implementation by October 2006.
  --Social Security Number Verification Service (SSNVS) was recently 
        approved by OMB. SSA plans to begin implementation in June 
        2005, with full nationwide implementation in October 2005. 
        Employers who previously called the Employer 800 Number to 
        verify employee SSNs will be able to obtain that confirmation 
        via the Internet, instead. SSA plans extensive marketing of 
        electronic SSNVS, which is expected to reduce SSN verification 
        calls to the Employer 800 Number, verifications requested by 
        tape/diskette, and the processing of paper listings.
  --Electronic Freedom of Information Act (EFOIA) is expected to expand 
        the use of the Internet to provide faster and better access to 
        Government services and Information. The EFOIA system will 
        employ technology that will automate SSA's internal FOIA 
        processes to substantially reduce the FOIA processing time and 
        allow us to respond to citizens within the legally required 20-
        day timeframe. The new system will accept electronic credit 
        card payments and respond to requests via aggressive use of the 
        Internet. EFOIA is expected to reduce the OEO unit time for 
        FOIA actions by 20 percent effective with fiscal year 2006.
  --The Microfilm/Microfiche Replacement Project was approved by the 
        Information Technology Advisory Board in fiscal year 2004 after 
        evaluation of Proof of Concept (POC) results. The processes SSA 
        has used to produce, store, and access microfilm/fiche data 
        have been among its most labor-intensive and costly. 
        Microfilming technology is outdated and increasingly difficult 
        to maintain. Online access by Operations employees from their 
        workstations will enable SSA to process related workloads on a 
        timely basis and ensure both the availability and integrity of 
        SSA's databases. Based on POC results, the unit time required 
        for employees in the PSCs, ODIO and OEO to access data will 
        decrease from an average of 12 minutes to an average of 2 
        minutes.
  --W-2C Online will continue to decrease the volume of W-2 corrections 
        received in OEO for manual processing (examination, data entry/
        balancing, microfilming, etc.).
  --As part of the e-Authentication initiative of the Presidential E-
        Government Initiatives, SSA has signed a Memorandum of 
        Understanding with GSA to implement the federated 
        authentication architecture with several SSA applications 
        through fiscal year 2006. The federated authentication 
        architecture will allow SSA to use the authentication of an 
        online customer by a trusted partner (e.g., a financial 
        institution whose authentication process has been certified by 
        GSA) to conduct business online. The federated authentication 
        architecture offers the potential for millions of online 
        customers of banks and other financial institutions to use 
        their existing pin/passwords to gain secure access to SSA 
        electronic applications, improving and simplifying user access 
        to our electronic applications without SSA (or any other 
        government agency) having to establish or maintain pin/
        passwords.
  --Development of the electronic folder to replace the paper 
        disability folder will continue with processes to speed the 
        request and retrieval of electronic evidence from medical, 
        educational, and other third parties.
  --SSA is studying ways to enhance the claims process to incorporate 
        secure messaging with claimants as an alternative communication 
        approach to the more-expensive telephone and in-person 
        channels.
    Question. What specific activities are supported in the fiscal year 
2006 budget to promote the use of electronic services to employers, 
covered workers and current recipients/beneficiaries?
    Answer. Through our network of field office managers and Public 
Affairs Specialists, we conduct ongoing outreach to raise awareness of 
online services and to encourage their use. Each year, working in their 
local communities, these professionals deliver speeches, submit 
newspaper articles, conduct workshops, lead seminars, and conduct radio 
and television interviews on all aspects of Social Security's programs, 
including the benefits of doing business with us online. We include 
information about our online services in all our Social Security 
publications, including the Social Security Statement, which we send to 
all workers age 25 and older.
    We also use a variety of other tools tailored to specific target 
audiences, as follows:
General Public
  --An Online Services Marketing Kit, which includes:
    --A Fact Sheet (also available in Spanish);
    --Links to Special Places, a one-page handout that lists webpages 
            such as the Glossary, the Immigration page, Most Popular 
            Baby Names--items that draw people of all ages and 
            ethnicities to the site;
    --A tri-fold leaflet, Apply Online for Social Security Benefits, 
            that answers questions about our online retirement 
            application;
    --A one-page ``URL Handout'' that provides addresses for the online 
            retirement application, the Social Security Statement page, 
            the Benefit Planners and Social Security card information; 
            and
    --An Internet bookmark
  --800 Number on-hold messages promoting online services
  --Partnerships with local libraries to distribute Social Security 
        Online bookmarks and conduct educational seminars
Third Parties With Clients Applying for Disability Benefits
  --PowerPoint overview of the i3368PRO (Internet Adult Disability and 
        Work History Report)
  --Instructional CD containing examples of the i3368PRO online 
        application screens
  --``eColleague letters'' (email messages that formerly were paper-
        based ``Dear Colleague'' letters) to national organizations 
        (advocates, attorneys, social service agencies, etc.)
  --Webpage www.socialsecurity.gov/i3368prohelp that provides 
        background information, helpful tips, etc.
Covered workers
  --Cost-of-Living Adjustment (COLA) notices sent to all beneficiaries 
        in January each year inviting them to visit 
        www.socialsecurity.gov
  --Panel on homepage promoting online retirement application
  --Door signs that show office hours and encourage visitors to do 
        business online
  --Posters, tent cards, leaflets
  --PowerPoint presentations
  --PowerPoint overview of the i3368 (Internet Adult Disability and 
        Work History Report)
  --Instructional CD containing examples of the online application 
        screens
  --Draft redesign of Baby Names page to promote online retirement 
        planners and calculators
  --800 Number on-hold messages promoting online services
Current recipients/beneficiaries
  --Change of Address:
    --Articles for local news outlets, organizations' house organs, 
            etc.
    --Correspondence with people who wrote to the Commissioner, the 
            Congress, or the White House
    --Fact Sheet
    --Partnership with USPS to place a link to SSA from their homepage
  --Direct Deposit:
    --Partner with Fidelity to allow their online customers to set up 
            direct deposit of their Social Security benefits into an 
            eligible account
  --800 Number on-hold messages promoting all online services
Employers
  --Articles in SSA/IRS Reporter
  --Electronic Wage Reporting CD
  --Posters, pamphlets, fact sheets
  --Inserts for inclusion in IRS correspondence with employers
  --Seminars at national conferences, such as the IRS Tax Forums the 
        American Payroll Association and the National Restaurant 
        Association to promote online wage reporting and filing for 
        retirement online
  --Partnerships with Chambers of Commerce across the country to 
        encourage small business owners to file their wage reports 
        online
  --Partnerships with Human Resource Managers including the Society of 
        Human Resource Managers to encourage their employees to file 
        for retirement online
  --CD for Human Resource Managers promoting online retirement and 
        providing useful tips
  --Screen calendars (calendar strips that people affix to their 
        computer monitors)
  --Survey of non-electronic filers to identify (and help us overcome) 
        barriers to online wage reporting
  --Website covering all aspects of online wage reporting
  --Toll-free call center specifically for employers with wage 
        reporting issues
  --W2News e-mail specifically for employers discussing wage reporting 
        issues
    Question. How much savings does SSA expect through its electronic 
service delivery initiative in fiscal year 2005 and over the period 
fiscal year 2004-fiscal year 2007?
    Answer. Although savings have not been specifically identified for 
most of these initiatives, we expect that the efficiencies gained 
through implementation and expansion of these efforts will be an 
essential element in our ability to reach a goal of a 2 percent annual 
improvement in productivity.

                 BI-PARTISAN SOLVENCY EDUCATION PROGRAM

    Question. Please provide the Subcommittee with additional 
information related to the proposed bi-partisan solvency education 
program. What resources are requested within the fiscal year 2006 
budget for these activities? How does this planned level of expenditure 
compare with fiscal years 1999-2004?
    Answer. Among the many services provided by the Social Security 
Administration is educating the American public about the programs and 
finances of Social Security. One of the stated objectives in our Agency 
Strategic Plan is: ``Through education and research efforts, support 
reforms to ensure sustainable solvency and more responsive retirement 
and disability programs.'' No specific amount was included in SSA's 
fiscal year 2006 budget request for solvency education. As in prior 
years, this effort is part of the ongoing educational program conducted 
by SSA to educate the public about the Social Security program, 
including the financing challenges facing them, through our ongoing 
communication efforts. As the national discussion continues on how best 
to strengthen Social Security for the future, we will work to continue 
to ensure that policymakers and the public have the information needed 
to assess the implications of all proposals under consideration.
    Messages about the current status of the Trust Funds, as described 
in the Annual Report of the Board of Trustees of the Federal Old-Age 
and Survivors Insurance and Disability Insurance Trust Funds are 
included in a number of our public information resources, including:
  --On our website--www.socialsecurity.gov;
  --In our publications--``The Future of Social Security'' and 
        ``Understanding The Benefits'' pamphlets;
  --In the annual Social Security Statement mailed to all workers age 
        25 and older not currently receiving benefits; and
  --When appropriate, as part of the presentation by our Agency 
        communicators when speaking to groups and organizations.

                        SOCIAL SECURITY EARNINGS

    Question. Each year approximately nine million wage records cannot 
be reconciled due to a mismatch associated with the name or Social 
Security Number of a person. According to the Inspector General of the 
Social Security Administration, as of July 2002, the Earnings Suspense 
File contained 236 million wage items totaling roughly $374 billion. Of 
these amounts, roughly 80 million items worth $13 billion are more than 
30 years old. What activities are proposed in the fiscal year 2006 
budget to update the records of wage earners whose current or future 
social security benefits would be lower than provided under current law 
due to processing mismatches? What steps are being taken to ensure that 
earnings are posted to the correct social security number upon initial 
submission and how does the fiscal year 2006 budget support these 
actions?
    Answer. In fiscal year 2003, SSA began developing new matching 
software to associate earnings items in the Earnings Suspense File 
(ESF) with the correct individual master earnings file. The new 
routines use data housed on the ESF, enumeration records, benefit 
records and earnings records to confirm that the correct earnings 
records were identified. In fiscal year 2003 and 2004, SSA removed 
about 10 million items from the ESF and posted them to the correct 
earnings records for tax years 1937 through 2000. In fiscal year 2005, 
we are continuing to expand our new software and are focusing on tax 
year 2001. The improvements will also be used to remove additional ESF 
items for years prior to 2001.
    To prevent future earnings from going into the ESF, SSA works with 
employers to provide tools to allow them to determine if they have a 
name/Social Security number (SSN) mismatch on their payroll records 
prior to sending W-2s to SSA for processing. SSA provides a free 
Employee Verification Service where an employer can verify if a name 
and SSN match. SSA has piloted an Internet-based version of this 
service, the Social Security Number Verification Service (SSNVS). SSA 
anticipates offering this free Internet-based service to all employers.
    SSNVS allows an employer to verify up to ten names/SSNs at a time 
with SSA over the Internet while receiving a response within seconds. 
In addition, an employer may submit a file over the Internet of up to 
250,000 names/SSNs and receive a response on the next business day.

              LEGISLATIVE PROPOSAL--SSI DISABILITY CLAIMS

    Question. The fiscal year 2006 budget request includes a 
legislative proposal that would require SSA to review at least 50 
percent of favorable decisions for adult SSI disability claims before 
starting payments. What are the administrative costs of this proposal 
in fiscal year 2006, and are these costs requested within the LAE 
account? What are the anticipated programmatic savings from this 
proposal?
    Answer. Under current law, SSA reviews at least 50 percent of all 
Title II initial disability allowances made by State agencies on behalf 
of SSA. The budget proposal would apply the same requirement for adult 
disability allowances in the SSI program. When fully phased in, 50 
percent of initial SSI disability allowances would be reviewed.
    The administrative costs in fiscal year 2006 are estimated to be 
about 45 workyears and $6 million which would be absorbed under the LAE 
account if the legislation is enacted.
    The estimated program savings to general revenues of the 
preeffectuation proposal in the budget are about $493 million over 10 
years in the SSI program alone. Additional Medicaid savings from the 
proposal over 10 years are estimated to be about $639 million.

                     SOCIAL SECURITY PROTECTION ACT

    Question. According to the ``Justification of Estimates for 
Appropriations Committees'' for the fiscal year 2006 budget request, 
the LAE account includes resources needed to implement the Social 
Security Protection Act. How much funding is required to implement each 
activity required by the Act?
    Answer. There are fifty-one sections of the SSPA enacted March 2, 
2004. The fiscal year 2006 administrative budget includes $14.7 
million, and 211 workyears (WYs), to fund the following provisions:
  --Expanding numbers of onsite representative payee reviews the Agency 
        will need to conduct under Section 102(b).
  --Processing suspensions of Title II benefits to persons fleeing 
        prosecution, custody, or confinement, and/or those violating 
        probation or parole as provided in Section 203. This section 
        extends fugitive felon provisions currently applied to Title 
        XVI beneficiaries to Title II beneficiaries.
  --Issuing receipts to acknowledge submission of reports of changes in 
        work or earnings status of disabled beneficiaries as provided 
        in Section 202.
    The SSPA also authorizes attorney fees to be paid directly out of 
individuals' retroactive SSI benefits to the same extent and under the 
same processes as currently are in place for deducting attorney fees 
from retroactive OASDI benefits (Section 302). Additionally, it 
requires SSA to test the impact of establishing a fee payment process 
for non-attorney representatives that is similar to the current one for 
attorneys (Section 303).

                       RAILROAD RETIREMENT BOARD

          Prepared Statement of Michael S. Schwartz, Chairman
    Mr. Chairman and Members of the Committee: We are pleased to 
present the following information to support the Railroad Retirement 
Board's (RRB) fiscal year 2006 budget request.
    The RRB administers comprehensive retirement/survivor and 
unemployment/sickness insurance benefit programs for railroad workers 
and their families under the Railroad Retirement and Railroad 
Unemployment Insurance Acts. The RRB also has administrative 
responsibilities under the Social Security Act for certain benefit 
payments and Medicare coverage for railroad workers. During fiscal year 
2004, the RRB paid $9 billion in retirement/survivor benefits to about 
649,000 beneficiaries, and $83 million in unemployment/sickness 
insurance benefits to about 34,000 claimants.
    We are respectfully requesting a total agency budget of 
$103,398,240 in fiscal year 2006. This total includes $102,543,040 for 
ongoing agency operations, which is the same as the amount included in 
the President's proposed budget for the year. In addition, we are 
requesting $855,200 for critical elements of the RRB's Enterprise 
Architecture Capital Asset Plan.

                     ADMINISTRATIVE FUNDING ISSUES

    The President's proposed budget would provide the same level of 
funding for the RRB's administrative expenses in fiscal year 2006 as 
the amount appropriated for fiscal year 2005. To operate at this level, 
RRB staffing has been significantly reduced. Early this fiscal year, 77 
employees were separated from the agency through a program of voluntary 
separation incentives, and since that time, new hiring has been 
severely restricted. The agency's funded staffing level for fiscal year 
2005 is currently 76 full-time equivalent staff years (about 7.3 
percent) lower than fiscal year 2004.
    Continuation of the same funding level from fiscal year 2005 to 
2006 would effectively require the RRB to absorb all fiscal year 2006 
cost increases for the goods and services required to administer the 
railroad retirement/survivor and unemployment/sickness insurance 
benefit programs. These rising costs include the January 2006 pay 
increase for the agency's employees, which would total approximately 
$1.61 million at the currently estimated rate of 2.6 percent.
    Under current law, the cost increases would require further cuts in 
agency staffing, because nearly 80 percent of the RRB's budget is used 
for employees' salaries and benefits. We estimate that the President's 
proposed budget would provide sufficient funding for a staffing level 
of 931 FTE's, which is 41 FTE's less than we expect to use in fiscal 
year 2005. In order to reach this level, we would need to conduct a 
reduction-in-force of about 18 employees at an estimated cost of 
$233,000.

                   NONGOVERNMENTAL DISBURSEMENT AGENT

    The President's proposed budget assumes that the RRB will contract 
with a nongovernmental agent for disbursement services, as provided 
under Section 107(e) of the Railroad Retirement and Survivors' 
Improvement Act of 2001 (Public Law 107-90). However, initial market 
research has indicated that the cost of doing so would be about three 
times the cost of having similar services provided by the Department of 
the Treasury. In addition, our Inspector General has questioned whether 
certain services provided by the Department of the Treasury, such as 
reclamations, would be provided as effectively by a nongovernmental 
disbursement agent.
    We have concluded that outsourcing this function would be 
inconsistent with the President's policy of outsourcing only where the 
government would save costs. For fiscal year 2005, the Congress added 
language to our appropriations bill prohibiting this transfer: Section 
516 of the Departments of Labor, Health and Human Services, and 
Education, and Related Agencies Appropriations Act, 2005 provides that 
none of the funds appropriated under the Act are to be used to contract 
with a nongovernmental disbursement agent. The RRB also submitted 
separate legislation to address this issue during the previous 
Congress, and we plan to again submit legislation on the subject during 
this Congress.
    Current estimates indicate that the cost of contracting with a 
nongovernmental disbursement agent would be in excess of $3 million for 
the first year and $2.3 million in subsequent years. By comparison, the 
annual cost of having these services provided by the Department of the 
Treasury is about $800,000. Enactment of legislation to remove this 
requirement would provide sufficient savings in fiscal year 2006 to 
enable the RRB to cover essential operating costs at the proposed 
budget level.

               ENTERPRISE ARCHITECTURE CAPITAL ASSET PLAN

    Our budget request includes funding for a key element of the RRB's 
Enterprise Architecture Capital Asset Plan, which addresses the major 
initiatives needed to implement the agency's target enterprise 
architecture. This request is highlighted separately because of its 
significance to the long-term, continued viability of agency programs, 
and the realization that movement toward the desired target 
architecture will be a multi-year effort involving special funding 
needs. We are requesting an additional $855,200 in fiscal year 2006 to 
continue with an initiative to convert our processing systems to a 
relational database management system.
    Gartner Consulting recommended that we investigate alternatives for 
our Computer Associates' Integrated Database Management System (IDMS) 
and prepare to actively retire the platform beyond 2006. The RRB's day-
to-day operations are heavily dependent on application systems that are 
based on IDMS technology. Delaying the database management system 
conversion would create a high risk of loss for these systems, which 
would compromise the agency's ability to pay benefits and fulfill its 
mission in the future. For this reason, we have already begun project 
development for this initiative. We are currently developing 
specifications for contractual assistance, and we expect to release a 
request for proposals later in fiscal year 2005. Preliminary estimates 
indicate that a full conversion might be accomplished within 12 to 18 
months, although our schedule will depend on the availability of 
resources.
    In addition to the requests for administrative expenses, the 
Administration's budget includes $97 million to fund the continuing 
phase-out of vested dual benefits, and $150,000 for interest related to 
uncashed railroad retirement checks.

                  FINANCIAL STATUS OF THE TRUST FUNDS

    Railroad Retirement Accounts.--The RRB continues to coordinate its 
activities with the National Railroad Retirement Investment Trust 
(NRRIT), which was established by the Railroad Retirement and 
Survivors' Improvement Act of 2001 to manage and invest railroad 
retirement assets. The RRB transferred $586 million to the NRRIT in 
fiscal year 2004. This amount is in addition to the $19.188 billion and 
$1.502 billion transferred in fiscal years 2003 and 2002, respectively. 
In fiscal year 2004, the NRRIT transferred $1.564 billion to the RRB 
for the payment of tier 2 benefits.
    In June 2004, we released the annual report on the railroad 
retirement system required by Section 22 of the Railroad Retirement Act 
of 1974, and Section 502 of the Railroad Retirement Solvency Act of 
1983. The report, which reflects changes in benefit and financing 
provisions under the Railroad Retirement and Survivors' Improvement Act 
of 2001, addresses the 25-year period 2004-2028 and contains generally 
favorable information concerning railroad retirement financing. The 
report included projections of the status of the retirement trust funds 
under three employment assumptions. These indicated cash flow problems 
only under a pessimistic employment assumption, and then not until 
calendar year 2026. This is 4 years later than in the previous year's 
report.
    Railroad Unemployment Insurance Accounts.--The equity balance of 
the railroad unemployment insurance accounts at the end of fiscal year 
2004 was $87.5 million, an increase of $36 million from the previous 
year. The RRB's latest annual report on the financial status of the 
railroad unemployment insurance system, issued in June 2004, was 
generally favorable. The report indicated that even as maximum daily 
benefit rates rise 35 percent (from $55 to $74) from 2003 to 2014, 
experience-based contribution rates are expected to keep the 
unemployment insurance system solvent. No loans are anticipated even 
under our most pessimistic assumption. The average employer 
contribution rate remains well below the maximum throughout the 
projection period, but a 1.5 percent surcharge is now in effect and is 
expected for calendar year 2006 and probably 2007. We did not recommend 
any financing changes based on this report.
    In conclusion, we want to stress the RRB's continuing commitment to 
improving our operations and providing quality service to our 
beneficiaries. We recognize that fiscal year 2006 will be a tight 
budget year throughout the Federal government, and our budget request 
reflects our continued commitment to contain the RRB's administrative 
costs accordingly. Thank you for your consideration of our budget 
request. We will be happy to provide further information in response to 
any questions you may have.
                                 ______
                                 
       Prepared Statement of Martin J. Dickman, Inspector General

    Mr. Chairman and Members of the Subcommittee: My name is Martin J. 
Dickman, Inspector General of the Railroad Retirement Board (RRB). I 
would like to thank you, Mr. Chairman, and the members of the committee 
for your continued support for the Office of Inspector General. I wish 
to describe our fiscal year 2006 appropriations request and our planned 
activities.
    The Office of Inspector General requests funding of $7,195,968 to 
ensure the continuation of its independent oversight of the RRB. The 
agency is responsible for managing benefit programs which paid $9 
billion in retirement and survivor benefits to approximately 649,000 
beneficiaries in fiscal year 2004 and an additional $83 million in net 
railroad unemployment and sickness insurance benefits to 32,000 
claimants. The RRB also administers Medicare Part B, the physician 
services aspect of the Medicare program, for qualified railroad 
retirement beneficiaries. Through this program, approximately $923 
million in annual Medicare benefits are paid to approximately 551,000 
beneficiaries.
    In fiscal year 2005, the Office of Inspector General will continue 
to concentrate its efforts on the performance of reviews of significant 
policy issues and program operational areas. We will coordinate our 
efforts with agency management to identify and eliminate operational 
weaknesses. We will also continue our investigation of allegations of 
fraud, waste and abuse, and refer cases for prosecution and monetary 
recovery action.
    We also request the removal of the prohibition on the use of 
appropriated funds for any audit, investigation or review of the 
Railroad Medicare program. The RRB manages a nationwide contract for 
processing Medicare Part B claims for railroad beneficiaries. The 
agency is responsible for the enrollment of beneficiaries, premium 
collection, answering beneficiary inquiries and conducting the annual 
Carrier Performance Evaluation for the Medicare carrier.
    The prohibition does not permit the OIG to fulfill its statutory 
oversight responsibilities for a major agency program. The prohibition 
is contrary to Federal government priorities to reduce fraud in one of 
the largest Federal programs.
    We also request oversight authority to conduct audits and 
investigations of the National Railroad Retirement Investment Trust 
(NRRIT), the body responsible for the investment of approximately $27 
billion in trust funds used to support Railroad Retirement Act benefit 
programs. This office would ensure sufficient reporting mechanisms are 
in place and assess if the NRRIT members are fulfilling their fiduciary 
responsibilities. We have repeatedly expressed concerns about RRB 
management's passive relationship with the NRRIT, and identified the 
issue as a serious challenge for the RRB.
    The OIG currently is required to reimburse the agency for office 
space, equipment, communications, office supplies, maintenance and 
administrative services. We are the only Federal OIG that cannot 
negotiate a service level agreement with its parent agency. We, 
therefore, request that the language in appropriation law be removed.

                            OFFICE OF AUDIT

    Auditors will perform the audit of the RRB's 2005 financial 
statements and preliminary work for the 2006 financial statements to 
ensure the issuance of reliable financial information. The OIG will 
obtain the services of a consulting actuary to audit the statement of 
social insurance.
    Audit staff will work with agency management to ensure detailed and 
verifiable financial information is available from the National 
Railroad Retirement Investment Trust (NRRIT). As discussed above, we 
believe RRB management should take a more active interest in NRRIT 
activities.
    They will conduct the annual evaluation of the RRB's information 
systems security to meet the requirements of the Federal Information 
Security Management Act of 2002. We will also monitor the agency's 
information systems operations to determine if the agency is meeting 
the goals established in its Strategic Information Resources Management 
Plan and to ensure the agency is in compliance with the provisions of 
the Information Technology Management Reform Act.
    Auditors will continue to monitor agency actions to address 
security deficiencies and complete corrective actions. They will ensure 
that network and system security safeguards are in place to protect the 
confidentiality of sensitive financial and personal information. 
Auditors will also perform assessments of the agency's e-government 
initiatives to identify and eliminate system vulnerabilities, and to 
ensure compliance with the E-Government Act of 2002. We will continue 
our monitoring efforts of the RRB's document imaging activities and the 
expansion of paperless processing to ensure the integrity of records.
    Auditors will continue to review RRB benefit processes and 
procedures to identify ways to reduce administrative and adjudicative 
errors. They will offer recommendations to strengthen the agency's debt 
collection program to reduce the outstanding receivables.

                        OFFICE OF INVESTIGATIONS

    The Office of Investigations (OI) identifies, investigates and 
presents cases for prosecution, throughout the United States, 
concerning fraud in RRB benefit programs. In fiscal year 2006, OI will 
continue to focus its resources on the investigation of cases with the 
highest fraud losses. OI currently has approximately 500 active 
investigations involving fraudulent benefit payments and fraudulent 
reporting with fraud losses of approximately $11 million. These cases 
involve all RRB programs that provide sickness and unemployment 
insurance benefits to injured or unemployed workers, retirement 
benefits, and disability benefits for workers who are disabled.
    We will continue our efforts with program managers to address 
weaknesses in agency programs that allow fraudulent activity to occur, 
and will recommend changes to ensure program integrity.
    We will concentrate our resources on cases with the highest fraud 
losses, those related to the RRB's retirement and disability programs 
as well as fraudulent reporting by railroad employers. OI will dedicate 
considerable resources to the investigation of nationwide schemes to 
defraud the RRB disability program. Disability cases currently 
constitute about 40 percent of our investigative caseload. These cases 
involve more complicated schemes and result in the recovery of 
substantial funds for the agency's trust funds.
    In fiscal year 2006, we will continue to use the Department of 
Justice Affirmative Civil Enforcement (ACE) program for those cases 
which do not meet the criminal guidelines of U.S. Attorneys. Through 
this program, we are able to obtain civil judgements and recover trust 
fund monies for the RRB.

                                SUMMARY

    In fiscal year 2006, the Office of Inspector General will continue 
to focus its resources on the review and improvement of RRB program 
operations and ensuring the integrity of agency trust funds. We will 
also continue to aggressively pursue individuals who engage in 
activities to fraudulently obtain RRB funds.

                       NONDEPARTMENTAL WITNESSES

    [Clerk's note.--The subcommittee was unable to hold 
hearings on nondepartmental witnesses. The statements and 
letters of those submitting written testimony are as follows:]

                          DEPARTMENT OF LABOR

     Prepared Statement of Motivation, Education and Training, Inc.
    Honorable Chairman, Senator Arlen Specter, and Honorable Committee 
Members: It is with sincere appreciation that I convey our gratitude 
for your efforts on behalf of all hard working Americans, and for 
granting us the opportunity to share information about the nation's 
migrant and seasonal agricultural workers and the importance of the 
National Farmworker Jobs Program.
    I am the executive director of Motivation Education & Training, 
Inc. (MET), the authorized National Farmworker Jobs Program (NFJP) 
operator in Louisiana, Minnesota, North Dakota, and Texas, which are 
all funded through Section 167 of the Workforce Investment Act (WIA). 
MET is a community-based organization headquartered near Houston, 
Texas, and has been actively engaged serving low-income populations and 
communities for almost four decades.
    Since the 1960s, the affirmative efforts of both Congress and 
various Presidential Administrations have created and preserved a 
modest, though vital, system to aid farmworkers and their family 
members who seek improved economic prospects through career training 
and stabilization services. As you may know, a typical American 
agricultural worker faces some of the harshest working conditions in 
the United States, and yet their compensation is neither commensurate 
with the risks taken, nor sufficient for the work performed. During the 
most recently completed Program Year, MET served more than 3,000 
migrant and seasonal farmworkers with reported average annual earnings 
of $5,855 per client. Despite this shockingly low income, very few 
farmworkers, only 6.3 percent, seek and receive public assistance, 
preferring instead the path of self-reliance and an extremely meager 
existence.
    Uncertainty, which is inherent in the agricultural economy, ensures 
the perpetuation of a cruel paradox wherein extended periods of 
joblessness due to lack of available work, are interspersed with 
fleeting spikes in labor demand as crops mature or weather conditions 
permit activity in the fields. The long distances that many farmworkers 
and their families travel represents the desperate tradeoff between the 
mere hope of income and the likelihood that any semblance of stability 
can be achieved and maintained. But members of this community face 
severe challenges when seeking to exercise other career options, and 
for many families, reliance on agriculture is passed along from one 
generation to the next, thus ensuring the inheritance of work, 
subsistence, and poverty for decades to come.
    Historically, migrant and seasonal farmworkers have had relatively 
limited access to the public workforce investment system. A number of 
factors have worked in concert to discourage their participation, and 
even in the recently expanded One-Stop network, farmworkers can expect 
little assistance outside of the local systems where NFJP programs 
consistently offer high caliber career development and stabilization 
services. Yet despite both the need for the program and the phenomenal 
performance of the NFJP with respect to all other workforce investment 
programs, the current leadership at the US Department of Labor fails to 
see any value in preserving this most basic form of individual, family, 
and community economic development. Though duly authorized in WIA we 
now face the regular threat of elimination, but MET and our partners 
across the country continue to strive for better employment options for 
farmworkers and increased earnings that can move families out of 
poverty and into progressively higher tiers of economic stability and 
security.
    Within the last year, a series of DOL-sponsored community forums in 
three regions of the country reinforced the necessity of preservation 
of the NFJP. The dialogues brought together local workforce boards, 
local and regional One-Stop partners, state agencies, federal 
stakeholders, and NFJP representatives in a setting that encouraged 
analysis and discussion related to improved One-Stop access for migrant 
and seasonal farmworkers. The forum in Texas that I attended primarily 
served as the central U.S. regional dialogue, and ultimately delivered 
two resounding messages: (1) preservation of the NFJP is crucial if 
farmworker clients can expect any type of appropriate workforce 
investment service; (2) expanded farmworker access to the One-Stop 
system is an improbable, if not impossible, prospect in the absence of 
the NFJP or a substantially similar nationally-administered initiative.
    Workforce board representatives affirmed the necessity of our 
experienced and capable administration of workforce investment services 
for migrant and seasonal farmworkers. Citing the complexity of the 
challenge that farmworker clients represent to the general system's 
core, intensive, and training delivery operations, as well as our 
singular expertise in working with these constituents, boards and other 
key stakeholders candidly expressed their concerns about some of the 
limitations within the evolving One-Stop system. I did not hear one 
dialogue participant state, suggest, or even imply that passing 
responsibility to the states and local boards would do anything except 
dramatically reduce farmworker access to public workforce services.
    A reasonable evaluation of NFJP performance clearly places this 
critical workforce component in the highest echelon of WIA authorized 
partners, achieving better results than programs that receive 
substantially more funds per client, as well as those serving 
populations that are better equipped than farmworkers upon program 
entry to secure sustainable employment. We work hard to place our 
clients in permanent positions that will afford an opportunity for 
consistent long-term upward mobility, and that provide compensation 
packages consistent with the needs of today's families. Few jobs are 
permanent in the strictest sense, and given the nature of the evolving 
global economy, an individual's ability to acquire and retain 
employment is only as promising as that person's capacity to satisfy 
emerging skill demands and their facility in utilizing available 
resources to promote their employment. Without the individual attention 
and highly intensive case management intervention that is available to 
farmworkers only through the NFJP, most of this population would be 
unable to matriculate or complete a workforce development training 
program of the type necessary to secure and retain higher wage and 
higher skill employment.
    Belt-tightening and budget reductions are inevitable considerations 
in light of the current federal revenue shortfall; however, we would do 
immeasurable injustice to a worthy few and an extreme disservice to our 
national character if, in our attempt to reduce expenditures, we place 
a heavier load on the backs of our already overburdened and less 
fortunate citizens. I would respectfully request your favorable 
consideration of full restoration for the NFJP in fiscal year 2006, and 
if that proves altogether too ambitious, at least the maintenance of 
current federal support for this crucial component in the struggle for 
economic self-sufficiency among the poorest of America's workers.
                                 ______
                                 
    Prepared Statement of the National Association of Home Builders

    On behalf of the more than 220,000 members of the National 
Association of Home Builders (NAHB), as well as our workforce 
development arm, the Home Builders Institute (HBI), we thank you for 
the opportunity to submit this statement for the record on the 
Responsible Reintegration of Youth Offenders program, and the Prisoner 
Re-entry Program.
    NAHB members are involved in home building, remodeling, multifamily 
construction, property management, subcontracting, design, housing 
finance, building product manufacturing and other aspects of 
residential and light commercial construction. Known as ``the voice of 
the housing industry,'' NAHB is affiliated with more than 800 state and 
local home builder associations around the country. NAHB's builder 
members will construct about 80 percent of the more than 1.6 million 
new housing units projected for 2005, making the housing industry one 
of the largest engines of economic growth in the country, and vital to 
the nation's overall economic growth and prosperity.
    Throughout the past two decades, one of the most pressing problems 
confronting our industry has been a shortage of skilled workers. Record 
numbers in the construction of new homes, retirements and lackluster 
interest in the construction trades by younger generations, compounded 
by insufficient training opportunities for those interested in 
construction, are among the many factors contributing to the shortages. 
According to the Bureau of Labor Statistics, some 240,000 workers are 
needed each year to meet the nation's demand for housing, and they 
anticipate that over 1 million new jobs in the residential construction 
industry will be created in the next decade as builders attempt to keep 
up with demand for affordable housing.

            HOME BUILDERS INSTITUTE (HBI) PROGRAM BACKGROUND

    Each year, the Home Builders Institute (HBI) works through various 
programs to train and place several hundred youth in residential 
construction jobs. Through real-life, hands-on training, some of our 
nation's most at-risk young people, learn a skill, and earn a second 
chance at a productive and successful life and career. Since 1994, HBI 
has focused a significant portion of its effort and resources on one 
particular targeted population, adjudicated youth, through its Project 
CRAFT (Community Restitution Apprenticeship-Focused Training) program. 
Piloted in 1994 through a Department of Labor demonstration grant, 
Project CRAFT is targeted solely to adjudicated youth and youthful 
offenders. This program has successfully combined employers, the 
juvenile justice system, workforce development and other systems, in 
one overall approach, and has since been implemented at 15 sites in ten 
states (Colorado, Ohio, Florida, Maryland, Mississippi, New Jersey, 
North Dakota, South Carolina, Tennessee, and Texas). Funding for HBI's 
implementation of this program in the state of Tennessee has come 
largely through funds provided under the Responsible Reintegration of 
Youth Offenders budget line.
    Project CRAFT incorporates the apprenticeship concept of hands-on 
training and academic instruction, utilizing its Pre-Apprenticeship 
Certificate Training (PACT), numeracy, literacy and employability 
skills curricula. Under the supervision of journey-level trade 
instructors, students learn residential construction skills while 
completing community service construction projects. Nearly 85 percent 
of Project CRAFT graduates achieve success through industry jobs each 
year.
    Since 1994, Project CRAFT has helped more than 2,000 high-risk 
youth, and in addition to offering adjudicated youth trade skills and 
job placement, community service projects by students saved taxpayers 
nearly $400,000 in labor costs in 2003-2004 alone. During 2003-2004, 
Project CRAFT graduates were placed in jobs with an average wage of 
$8.58/hour and graduates performed over 49,000 hours of community 
service as part of their programs. Recidivism rates for Project CRAFT 
have averaged between 10-15 percent, an impressive rate when compared 
to the national average of over 50 percent. Additionally, students in 
the program tend to evidence one grade level of improvement in math and 
language skills attributable largely to the formal education component 
that includes contextual learning. Math and communication skills are 
continually reinforced as students are challenged to apply these skills 
to everyday situations in the field and in the classroom.
    Project CRAFT efforts were recognized by the Department of Labor 
and the National Youth Employment Coalition when in September 2002, the 
program received a PEPNet (Promising and Effective Practices Network) 
Award. We are also grateful to the Senate Subcommittee on Labor, Health 
and Human Services and Education for its acknowledgement of Project 
CRAFT in fiscal year 2005 Report Language, as well as Congress' years 
of dedicated support for the Responsible Reintegration of Youth 
Offenders program.

          RESPONSIBLE REINTEGRATION OF YOUTH OFFENDERS PROGRAM

    NAHB and HBI's encouraging experience with Project CRAFT is an 
example of the enormous success of the Responsible Reintegration of 
Youth Offenders pilot program, and the reason why we very strongly 
support the continuation of funding for a youth-focused program 
targeting adjudicated youth with training that provides this at-risk 
population with important job- and life-skills. The Responsible 
Reintegration of Youth Offenders Program has helped to bring together 
industry and government in a partnership with tangible positive 
outcomes. Since 1994 the program has earned a reputation as a 
worthwhile investment of taxpayer dollars, a significant and important 
resource to the nation's building industry, and a major contributor to 
the future success of thousands of young people. It is a demonstration 
model that works, and as such deserves to be touted and replicated. We 
hope that its proven success and recognition as an effective 
intervention will help enable it to receive continued funding, whether 
through a stand-alone program, or as part of a youth-focused component 
of the Prisoner Re-entry Program.

                       PRISONER RE-ENTRY PROGRAM

    In its fiscal year 2006 budget proposal, the administration 
proposes to fund the Prisoner Re-entry Program through appropriations 
to three federal departments (Department of Labor, $35 million; 
Department of Justice $15 million, Department of Housing and Urban 
Development, $25 million.) We hope this joint funding level will 
provide more opportunities to train the nation's at-risk youth. The 
Prisoner Re-entry Program continues to focus on ``helping individuals 
exiting prison make a successful transition to community life and long-
term employment'' through programs to help ex-offenders find and keep 
employment, obtain housing, and take advantage of mentoring programs.
    NAHB and HBI support the goals of the Prisoner Re-entry program, 
and agree that there is enormous potential for successful programming 
targeting ex-offenders. NAHB and HBI continue to believe that an 
important targeted community within the Prisoner Re-entry program must 
be adjudicated juveniles and we support extending Prisoner Re-entry 
program eligibility to adjudicated juveniles and youthful offenders 
ages 16-24, in addition to other age groups served by the program. We 
have found that these young people in particular are energetic, 
interested and engaged in learning the skills taught through our 
Project CRAFT program. We believe that any funding targeted to training 
those who are re-entering society must include a component targeted to 
the youth offender population.
    As we have stated, the Prisoner Re-entry program has significant 
potential for helping the adult offender community receive important 
training and job skills. And we believe that HBI is well-positioned to 
participate in an adult-focused program through its Project TRADE 
(Training, Restitution, Apprenticeship, Development and Education) 
program--which is the sister program to the youth-focused Project 
CRAFT. Designed to train and place adult offenders in employment in the 
home building industry, TRADE is currently being implemented in 
Colorado Springs and Sheridan, Ill. Project TRADE has trained over 500 
adult offenders in the residential construction trade since 1995 
through programs in Maryland, North Carolina, North Dakota, Oregon, 
Pennsylvania, Washington, Tennessee, Colorado and Illinois. We believe 
that Project TRADE's emphasis on adults complements the work done by 
Project CRAFT with younger offenders.

                               CONCLUSION

    NAHB and HBI continue to strongly support the goals of the 
Responsible Reintegration of Youth Offenders program. We also support 
the Department of Labor's interest in targeting a program to ex-
offenders and adjudicated individuals through the Prisoner Re-entry 
program, and we very strongly support the inclusion of youth offenders 
and adjudicated juveniles in this initiative.
    We believe that the Responsible Reintegration of Youth Offenders 
demonstration program has been highly successful, as evidenced by our 
own accomplishments with Project CRAFT. We fervently hope that any 
proposal supported by congressional appropriators will take into 
account the needs of both the youth and adult ex-offender populations, 
and will clearly lay out congressional intent to continue serving the 
youth ex-offender population.
    Again, we thank the subcommittee for this opportunity to share our 
views on the Responsible Reintegration of Youth Offenders program, and 
Prisoner Re-entry Initiative. We look forward to working with you to 
promote training programs that help America's at-risk youth acquire the 
skills they need for successful and productive careers in the home 
building industry.
                                 ______
                                 
   Prepared Statement of the National Coalition for Homeless Veterans

                              INTRODUCTION

    The National Coalition for Homeless Veterans appreciates the 
opportunity to submit recommendations on fiscal year 2006 
appropriations for and program management issues related to the U.S. 
Department of Labor (DOL).
    The National Coalition for Homeless Veterans (NCHV), established in 
1990, is a nonprofit organization with the mission of ending 
homelessness among veterans by shaping public policy, promoting 
collaboration, and building the capacity of service providers. NCHV's 
nearly 250 member organizations in 46 states and the District of 
Columbia provide housing and supportive services to homeless veterans 
and their families, such as street outreach, drop-in centers, emergency 
shelter, transitional housing, permanent housing, recuperative care, 
hospice care, food and clothing, primary health care, addiction and 
mental health services, employment supports, educational assistance, 
legal aid and benefit advocacy.
    More than 250,000 veterans are homeless on any given night; more 
than 500,000 experience homelessness over the course of a year. 
Conservatively, one of every three homeless adult males sleeping in a 
doorway, alley, box, car, barn or other location not fit for human 
habitation in our urban, suburban, and rural communities has served our 
nation in the Armed Forces. Homeless veterans are mostly males (2 
percent are females). 54 percent are people of color. The vast majority 
are single, although service providers are reporting an increased 
number of veterans with children seeking their assistance. 45 percent 
have a mental illness. 50 percent have an addiction.
    America's homeless veterans have served in World War II, Korea, the 
Cold War, Vietnam, Grenada, Panama, Lebanon, anti-drug cultivation 
efforts in South America, Afghanistan, and Iraq. 47 percent of homeless 
veterans served during the Vietnam Era. More than 67 percent served our 
nation for at least three years and 33 percent were stationed in a war 
zone.
    Male veterans are twice as likely to become homeless as their non-
veteran counterparts, and female veterans are about four times as 
likely to become homeless as their non-veteran counterparts. Like their 
non-veteran counterparts, veterans are at high risk of homelessness due 
to extremely low or no income, dismal living conditions in cheap hotels 
or in overcrowded or substandard housing, and lack of access to health 
care. In addition to these shared factors, a large number of at-risk 
veterans live with post traumatic stress disorders and addictions 
acquired during or exacerbated by their military service. In addition, 
their family and social networks are fractured due to lengthy periods 
away from their communities of origin. These problems are directly 
traceable to their experience in military service or to their return to 
civilian society without appropriate transitional supports.
    Contrary to the perceptions that our nation's veterans are well-
supported, in fact many go without the services they require and are 
eligible to receive. One and a half million veterans have incomes that 
fall below the federal poverty level. Neither the VA, state or county 
departments of veteran affairs, nor community-based and faith-based 
service providers are adequately resourced to respond to these 
veterans' health, housing, and supportive services needs. The VA plays 
only a limited role in providing employment services to veterans, 
administering just one small supported employment program for veterans 
with serious disabilities.
    The U.S. Department of Labor and state and local workforce agencies 
bear primary responsibility for ensuring that veterans are provided 
opportunities to prepare for and obtain productive employment. 
Accordingly, we urge Congress to provide full funding for the programs 
of the Department of Labor Veterans Employment and Training Service 
(VETS) in order to ensure that our nation's workforce services system 
is equipped to fulfill their obligations to our nation's veterans.

    FISCAL YEAR 2006 APPROPRIATION RECOMMENDATION--HOMELESS VETERAN 
                         REINTEGRATION PROGRAM

    The Homeless Veterans Reintegration Program (HVRP), within the 
Department of Labor's Veterans Employment and Training Service (VETS), 
provides competitive grants to community-based, faith-based, and public 
organizations to offer outreach, job placement and supportive services 
to homeless veterans. HVRP is the primary employment services program 
accessible by homeless veterans and the only targeted employment 
program for any homeless subpopulation. Homeless veterans have many 
additional barriers to employment than non-homeless veterans due to 
their lack of housing. HVRP grantees remove those barriers through 
specialized supports unavailable through other employment services 
programs. Grantees are able to place HVRP participants into employment 
for $2,100 per placement, a tiny investment for moving a veteran out of 
homelessness, and off of dependency on public programs.
    DOL estimates that 14,750 homeless veterans will be served through 
HVRP at the fiscal year 2005 appropriation level of $21 million. This 
figure represents just three percent of the overall homeless veteran 
population, which the Department of Veterans Affairs estimates numbers 
more than 500,000 over the course of a year. An appropriation at the 
authorized level of $50 million would enable HVRP grantees to reach 
approximately 24,000 homeless veterans.
    Additionally, HVRP is being used as the account to fund a joint 
Department of Labor and Department of Veterans Affairs initiative 
authorized by Congress to assist veterans incarcerated in their reentry 
to the community. This decision essentially adds a new purpose to the 
HVRP program, for which additional funds are needed.
    We urge Congress to appropriate at least $50 million for HVRP in 
fiscal year 2006 Labor-HHS-Education appropriations legislation.

           FUNDING FOR HOMELESS VETERANS REINTEGRATION PROGRAM
                        [In millions of dollars]
------------------------------------------------------------------------
                        Fiscal year                             Amount
------------------------------------------------------------------------
2004.......................................................           19
2005.......................................................         20.8
2006--Administration.......................................           22
2006--NCHV.................................................           50
------------------------------------------------------------------------

   FISCAL YEAR 2006 APPROPRIATION RECOMMENDATION--VETERANS WORKFORCE 
                           INVESTMENT PROGRAM

    The Veterans Workforce Investment Program (VWIP), within the 
Department of Labor's Veterans Employment and Training Service (VETS), 
provides grants to states and community-based, faith-based, and local 
public organizations to offer workforce services targeted to veterans 
with service connected disabilities, with active duty experience in a 
war or campaign, recently separated from the service, or facing 
significant barriers to employment (including homelessness). At least 
80 percent of total VWIP funds are distributed via competition. VETS 
may reserve 20 percent of total VWIP funds for discretionary grants. 
VETS uses these discretionary funds for studies, demonstration 
projects, and additional funding to supplement competitive grants. The 
fiscal year 2005 appropriation for VWIP is $8.5 million.
    Both those agencies that receive VWIP funds and those hoping to 
apply face the problem of resource scarcity. Due to funding 
limitations, agencies and organizations in less than half of states 
receive VWIP funds. The need for the type of targeted assistance that 
VWIP offers is clearly needed by veterans in all states. Additionally, 
caps on the size of grant awards make it difficult for existing 
grantees to recruit and retain staff. This limits program effectiveness 
and the collaborative process. Sadly, the President's fiscal year 2006 
request is a step backward, reversing the one million increase that 
Congress appropriated just last year.
    We urge Congress to appropriate at least $33.5 million for VWIP in 
fiscal year 2006 Labor-HHS-Education appropriations legislation.

            FUNDING FOR VETERANS WORKFORCE INVESTMENT PROGRAM
                        [In millions of dollars]
------------------------------------------------------------------------
                        Fiscal year                             Amount
------------------------------------------------------------------------
2004.......................................................          7.5
2005.......................................................          8.5
2006--Administration.......................................          7.5
2006--NCHV.................................................         33.5
------------------------------------------------------------------------

                               CONCLUSION

    NCHV appreciates the opportunity to submit recommendations to 
Congress regarding the resources and activities of the U.S. Department 
of Labor. We look forward to continuing to work with the Appropriations 
Committee in ensuring that our federal government does everything 
within its grasp to prevent and end homelessness among our nation's 
veterans. They have served our nation well. It is beyond time for us to 
repay the debt.
                                 ______
                                 
  Prepared Statement of the Opportunities Industrialization Center of 
                               Washington

    Honorable Chairman Specter and members of the Subcommittee: 
Opportunities Industrialization Center of Washington (OIC) has been 
providing employment and training, educational, nutritional and other 
community services in Central Washington for over 34 years. Since July 
of 1999, we have been the U.S. Department of Labor National Farmworker 
Jobs Program (NFJP) grantee for the state of Washington. Agriculture is 
one of Washington State's principal industries; the value of major 
crops alone is approximately $5.5 billion per year.
    Our NFJP program operates six regional offices and three satellite 
offices in central and western Washington. OIC provides a full range of 
core, intensive, training, and related assistance services to eligible 
farmworkers and dependents. From July of 1999 to June of 2004, we 
provided direct services to approximately 3,200 farmworkers, most all 
of whom had substantial barriers to employment. Approximately 41 
percent of our customers had less than an 8th grade education and an 
additional 29 percent had only up to an 11th grade education. Also, 58 
percent of customers were limited English proficient, 79 percent lacked 
significant work history outside of agriculture, 34 percent lacked 
transportation, and 20 percent were single head of household with 
children. Over 80 percent were unemployed at the time they entered our 
program. In light of these obstacles, our staff did an excellent job in 
obtaining year-round employment for approximately 1,200 of our 
customers, which was 114 percent of program goals during this time 
period.
    OIC has been a part of the development of our state's WorkForce 
Development System (the OneStop system) and are partners in each of the 
Workforce Development Councils within the areas that we provide 
services. This includes participation on key committees as the voice of 
the farmworker, as well as out-stationing of staff in each area's 
WorkSource Center. It is our experience that, while our state's 
WorkSource Centers provide quality services overall, they are not yet 
positioned to provide adequate services to the farmworker community.
    Traditionally, farmworkers in our state have been reluctant to go 
to official/bureaucratic settings in order to receive services. This 
holds true for our WorkSource Centers, most of which are housed in what 
were formerly Washington State Employment Security Department Job 
Service Centers, and which continue to be managed by this agency. Most 
WorkSource Centers maintain traditional business hours, Monday through 
Friday from 8:00 a.m. to 5:00 p.m. Moreover, service delivery is 
designed around a self-service methodology and makes extensive use of 
computer-based systems. As a result migrant and seasonal farmworkers 
are prevented from accessing services due to hours of operation. Also, 
people with low levels of literacy and/or limited/non-existent computer 
skills such as our customers cannot make effective use of available 
resources.
    A compounding problem is the lack of resources needed to adequately 
serve customers with substantial barriers to employment. Our state is 
currently working to develop its biennium budget, which currently has a 
$2.1 billion shortfall. Major cutbacks are targeted for most all state 
agencies, including the Employment Security Department which operates 
the WorkSource centers.
    For years, our WorkSource Centers have struggled to maintain 
adequate staffing due to budgetary constraints. With our state's 
current budget crisis, this problem will only worsen. Our NFJP program 
has helped to alleviate this problem by out-stationing staff on a 
regularly scheduled basis in the eight WorkSource Centers and affiliate 
sites. Our bilingual-bicultural staff provides direct services to 
customers and collaborating with our other WorkSource partners in 
serving the universal access needs of our customers in general, and 
farmworkers and agricultural employers in particular.
    The National Farmworker Jobs Program has been a success both 
nationally and within the state of Washington. To our knowledge, there 
are no resources at the federal or state level to fill the void that 
will occur if its funding is reduced or eliminated. Thus, the vital 
services now provided through the NFJP to Washington State's migrant 
and seasonal farmworkers, as well as to our state's WorkSource system, 
will not be replaced.

                        OIC NFJP SUCCESS STORIES

    The following illustrates both the value provided through the 
National Farmworker Jobs Program, and the perseverance and dedication 
of those whom we are entrusted to serve.
    Mrs. P came to Washington State with her family, not knowing anyone 
here or having any family members. Over most of her 17 years of married 
life, Mrs. P had never worked outside the home, while her husband 
provided for their five children (ages range from 3 years to 16 years) 
and her. Things changed dramatically when her husband suffered a severe 
emotional trauma resulting from his involvement in a fatal accident, 
together with other negative incidents. He has since been unable to 
work and is on long-term disability.
    Without a high school education, no driver's license or work 
experience, Mrs. P was only able to work in agriculture. She found her 
way to our office through the referral of a previous participant. 
Following assessment, an Individual Employment Plan was developed with 
Mrs. P to help her move out of the fields and into a good job that paid 
a livable wage. Mrs. P began work experience training in our Mount 
Vernon office as an Office Assistant and attended GED classes in the 
evenings. Later that fall she received training in our Office 
Technology course, a class developed specifically for our participants 
to teach them keyboarding, Microsoft office professional programs and 
prepare them for an office occupation (classes are held in the evening 
to accommodate participant such as Mrs. P who have to work during the 
day to support families). Mrs. P was also provided with job search/
resume assistance that lead to an OJT with Housing Authority of Skagit 
County as a full time General Office Clerk earning $9.28 an hour. Mrs. 
P also worked hard to get her Washington State Driver's License and 
after three attempts she finally realized this goal. Through her 
diligence, and the opportunities provided through our program, Mrs. P 
is now working as a Section 8 Specialist earning $11.15 an hour with 
Housing Authority of Skagit County.
    Prior to coming to our program, Ms. A. was, in her words, ``On the 
road to nowhere.'' Abused as a child, she attempted suicide at 11 and 
ran away from home at the age of 13. When she found her way to our 
Wenatchee office, she was unemployed and without any funds to support 
her 16 year old son and herself. Her only meaningful employment was 20 
years spent working in the orchards since she was 13. As might be 
expected, she never attended high school, and her prospects for full-
time employment were bleak.
    Staff met with Ms. A to perform an assessment to address her 
immediate needs; identify her skills, interests, and goals; and put 
together a plan to meet those goals. Ms. A focused on two goals that 
had always eluded her: to earn her GED and obtain a permanent job 
through which she could support her son.
    Staff immediately provided Ms. A with emergency services for food 
and shelter to stabilize her situation. They then enrolled her into an 
evening High School Equivalency program to provide the instruction and 
tutoring she needed to work towards her GED. Also, a work experience 
placement was developed to help her develop essential job-related 
skills, while also providing income to her household. Staff also 
provided Ms. A with ongoing counseling and support to help her attain 
success.
    Through her hard work, Ms. A felt the pride of having her son watch 
as she received her GED in a gradation ceremony with 22 other 
farmworkers. She also realized her employment goal when she became a 
full-time receptionist and assistant to the housing director for the 
Wenatchee Women's Resource Center. In all, staff worked with Ms. A for 
approximately one year to assist her in moving back onto a ``road to 
somewhere.''
                                 ______
                                 
     Prepared Statement of the National Job Corps Association, Inc.

    On behalf of the National Job Corps Association (NJCA) we want to 
thank the Labor, Health and Human Services and Education Appropriations 
Subcommittee for its dedication to Job Corps and our country's most 
vulnerable youth. For 40 years, Job Corps has consistently demonstrated 
its relevance and positive results for employers and youth. The 
program's supporters represent a bipartisan and broad coalition of 
congressional leaders; employers and community organizations; and other 
key decision-makers. They all agree that Job Corps has adapted to 
America's economic changes by listening to local and national 
businesses. In turn, Job Corps has partnered with high demand, high 
growth businesses to develop innovative solutions to meet their 
workforce needs and find life-long careers for America's most 
economically disadvantaged youth.
    We appreciate the Committee's strong support for the Job Corps 
program and urge you to provide Job Corps with $1.6 billion in the 
fiscal year 2006 appropriations process. The NJCA is deeply concerned 
that President's budget request does not go far enough to efficiently 
maintain the effective job training and educational services and the 
requisite infrastructure necessary to serve Job Corps' estimated 68,000 
students entering the 21st century workforce. While we encourage 
spending restraint by the United States Government, we also believe it 
is imperative to provide adequate funding to programs with proven 
positive results. We believe the work that Job Corps accomplishes on a 
daily basis goes hand-in-hand with the economic prosperity and security 
of our local communities and our nation.

                          JOB CORPS SUCCESSES

    Job Corps is known as ``America's first choice for a second 
chance'' for a good reason. Job Corps works. Over the past 40 years, 
Job Corps has instilled in more than 2 million youth the skills and 
attitudes they need to become productive, contributing participants of 
the nation's workforce. For a moment, consider some of Job Corps' most 
shining examples and see for yourself why Job Corps is considered one 
of the most successful job training programs in the country.
    Judge Sergio Gutierrez attended the Wolf Creek Job Corps Center 
(Oregon) in 1970 after he decided to drop out of high school to provide 
additional money for his family which was barely making ends meet at 
the time. The self proclaimed introvert proudly recalls how Job Corps 
enabled him to come into his own as a leader of a carpentry crew. After 
graduating from Job Corps, Judge Gutierrez enrolled at Boise State 
University where he received his B.A. in Elementary Education. After 
teaching fifth grade and English as a Second Language for a few years, 
Judge Gutierrez went back to school to earn his Juris Doctor degree 
from the University of California. In 1993, Judge Gutierrez was 
selected to serve as the district judge for the 3rd Judicial District 
of Idaho. In 2002, he earned a higher judicial appointment, this time 
as a member of the Idaho Court of Appeals. Today, Judge Gutierrez takes 
his children to visit Job Corps centers. Judge Gutierrez said, ``I 
wanted them to see where my success began.''
    Jasmine Small, a Licensed Practical Nursing (LPN) graduate from the 
Keystone Job Corps Center (Pennsylvania) graduated from the program and 
went on to pass the Pennsylvania State Board of Nursing Exam. The 
Tobyhanna, Pennsylvania native completed her clinical rotation at the 
Kingston HCR Manor Care facility, and in August 2004 accepted a job on-
site. Small aspires to be a Registered Nurse (RN) one-day. ``Job Corps 
helped me grow strong and determined to get things done,'' Small said. 
Thanks to employer partners like HCR Manor Care, Small will continue to 
advance her career within the health care field.

                     NJCA FISCAL YEAR 2006 REQUEST

    The NJCA requests a total of $1.6 billion for Job Corps in the 
fiscal year 2006 budget: $1.486 billion for Job Corps' Operational 
account and $115 million in the Construction, Rehabilitation and 
Acquisitions (CRA) account. The NJCA believes that Job Corps merits a 
$54 million increase over the fiscal year 2005 appropriations. This 
increase would provide a modest cost-of-living increase over the fiscal 
year 2005 enacted levels that unfortunately have not been addressed 
over the last two fiscal cycles. The increase would allow Job Corps to 
maintain its existing student services and allotted slots with a full 
inflationary adjustment for the 122 centers, address infrastructure 
rehabilitation needs, continue to eliminate the $350 million backlog of 
repairs, and provide second year funding for incremental expansion of 
Job Corps.

Operational Funds
    As the nation's largest residential education and job training 
program, Job Corps is designed to serve our nation's at-risk youth who 
might otherwise ``fall between the cracks.'' Job Corps succeeds by 
providing a safe place to learn the literacy, vocational, and 
employability skills youth need to become productive, taxpaying members 
of their community.
    Job Corps' 24-hour-a-day, 7-day-a-week program of individualized 
attention, discipline, and support has produced long-term results that 
save taxpayer dollars. As a residential program, Job Corps operations 
are particularly vulnerable to fixed cost increases, including 
wholesale food, transportation, utilities/energy, and health care. As 
you are aware, the price of gasoline has spiked to all-time highs in 
the last three years; food and beverage costs have increased by 24 
percent over the last ten years; and medical costs and health insurance 
premiums have risen at double-digit rates. These increases are costs 
Job Corps cannot control. While Job Corps has been implementing 
strategies to decrease costs--particularly energy costs--money has to 
be invested in the short-term to save money in the future. We all know 
that investing in our homes increases the property value. Investing in 
Job Corps increases the value of our local economies through an 
increased number of youth--32 percent of Job Corps youth come from 
families on public assistance--becoming well-positioned taxpaying 
members of their communities.
    Job Corps continues to maintain a high placement rate. In fact, 
more than 90 percent of all Job Corps graduates get jobs, enlist in the 
military, or enroll in higher education, making Job Corps America's 
most effective job training programs for economically disadvantaged 
youth.
    In fiscal year 2006 the NJCA requests the Committee provide $1.486 
billion for Job Corps' Operational account. This would allow Job Corps 
to:
  --Maintain existing student services and allotted slots with a full 
        cost-of-living increase for the 122 Job Corps centers across 
        the country;
  --Continue Job Corps' rigorous 24-hour-a-day, comprehensive 
        residential services for approximately 68,000 economically 
        disadvantaged youth per year;
  --Provide funding necessary to cover the escalating costs of staff 
        salaries, wholesale food, utilities/energy, transportation, 
        medical, mental and dental services, and workers compensation 
        insurance; and
  --Develop Job Corps pilot and demonstration projects to strengthen 
        academic and vocational offerings in high-growth and emerging 
        occupations, including but not limited to health care, homeland 
        security, and the military.

Construction, Rehabilitation and Acquisition (CRA) Funds
    With respect to Job Corps' capital account, the NJCA requests $115 
million in fiscal year 2006. These funds would be targeted to: repair 
dorms, classrooms, and other student facilities on existing Job Corps 
centers; replace deteriorated structures, especially those that 
threaten safety and health or violate minimum building codes, including 
mechanical systems; continue to address the estimated $350 million 
backlog in construction and/or repair needs; and provide second year 
funding for incremental Job Corps expansion.
    As you know, Job Corps gives young people the opportunity to focus 
and learn in a safe, stable, and supportive environment. However, the 
average building on a Job Corps center is 46 years-old--20 years older 
than the industry standard. While the program is trying valiantly to 
address the backlog of construction and repair improvements, it needs 
more funding to allow students to learn in an auspicious setting. Over 
the past several years, the Committee has taken a proactive approach to 
provide the program with the funds necessary to maintain Job Corps' 
physical plant. We thank the Committee for its strong support and urge 
Members to continue that support in fiscal year 2006.

Incremental Expansion
    Within Job Corps' CRA account, the NJCA strongly supports $15 
million for second year funding for the Congressional supported 
incremental expansion of Job Corps. As part of the NJCA's 10-year 
initiative--Job Corps: For the Nation and the Next Generation--to 
strengthen and improve Job Corps, the NJCA supports the Committee's 
past effort to designate centers as ``High-Growth Centers,'' designed 
specifically to address the country's most vital workforce needs. The 
NJCA envisions these ``High-Growth Centers'' providing academic and 
vocational training in the following high growth, high demand 
industries such as: automotive, construction, financial services, 
health professions, hospitality, information technology, homeland 
security, and transportation. In Job Corps' most recent expansion 
process, more than 50 communities across the nation applied for new 
centers in their communities. Since that time, many other communities 
have expressed interest, including Las Vegas; Nevada, Otttumwa, Iowa; 
and the states of New Hampshire and Wyoming, the only states lacking a 
Job Corps center. The NJCA looks forward to working with the Committee 
to continue the incremental expansion of Job Corps.

Preparing the Workforce for the 21st Century Job Corps: For the Nation 
        and the Next Generation
    Increasingly, private and public employers have turned to the Job 
Corps program for qualified entry-level recruits. While they are 
enthusiastic about the employees they hire from the program, they 
commonly express one limitation: the number of trained and employment-
ready graduates in these fields is too small. Although Job Corps is the 
nation's largest national residential training and education program, 
it currently can accommodate only about 68,000 students per year. 
Hospitals, pharmacies, nursing homes, the U.S. Army and Navy, civilian 
military support contractors, security firms, local police departments, 
and ambulance companies all say that they can hire as many qualified 
applicants as Job Corps can produce. Job Corps has beds, however, for 
only one percent of youth eligible to attend the program.
    To address these demands, the NJCA has developed a decade-long 
initiative, Job Corps: For the Nation and Next Generation, to 
strengthen and expand Job Corps to help meet our nation's needs for 
trained, entry level workers in three areas: health care, homeland 
security, and military preparedness. This Initiative would leverage the 
contributions of private and public sector partners with federal 
appropriations to expand Job Corps' capacity to train entry-level 
employees in these three crucial areas of shortage. The Initiative 
would produce quantifiable results over 10 years: 60,000 graduates in 
health care occupations, 50,000 graduates defending homeland security, 
and 50,000 military personnel. To support this Initiative, the NJCA 
requests dedicated funds beyond the NJCA's $1.6 billion request in the 
following federal programs and/or Departments:

Addressing the Nation's Health Care Workforce Shortage
    The NJCA requests dedicated funding--$5 million--for the Health 
Resources and Services Administration (HRSA)'s Bureau of Health 
Professions to address the shortage of health care professionals and 
provide access to health care vocational opportunities for many 
disadvantaged young people enrolled in Job Corps. The NJCA strongly 
believes that Job Corps centers are uniquely qualified to utilize HRSA 
grant programs to train students to pursue health careers while 
generating more health care professionals to serve economically 
disadvantaged communities. The NJCA urges that HRSA funds be dedicated 
to Job Corps in two key grant programs: Pathways to Health Professions 
Demonstration Program and Health Careers Adopt-a-School Demonstration 
Program.

Ensuring Safer Communities for the Nation
    Within the Department of Homeland Security (DHS) and building upon 
language in the fiscal year 2005 Omnibus Appropriations legislation, 
the NJCA requests funds--$2 million--for a pilot demonstration program 
to establish local relationships between the Transportation Security 
Administration (TSA) at three designated Job Corps centers. The pilot 
program would study the needs of airports and attrition rates of 
airport security personnel and the feasibility of utilizing local Job 
Corps centers with security training programs as suppliers of 
qualified, eager-to-work homeland security and airport screener 
employees.
    The NJCA also requests funds--$3 million--from DHS in fiscal year 
2006 budget to develop fully recognized Federal Emergency Management 
Agency (FEMA) training sites at three designated Job Corps centers. The 
partnership between FEMA and Job Corps would include Homeland Security 
and Fire Safety certifications that are currently incorporated into 
existing Safety/Security vocational programs on Job Corps campuses 
across the country.

Enhancing America's Security and Readiness
    Building upon the mutually beneficial relationships that Job Corps 
has established with the U.S. Army, U.S. Navy, U.S. Coast Guard, and 
U.S. Army and Air National Guard, the NJCA requests $5 million from the 
Department of Defense (DOD) to develop military-endorsed curriculum in 
order to establish six military preparation programs that would 
increase the number of Tier I high quality accessions recruits joining 
the military. These military preparation programs would be incorporated 
within a student's academic and vocational training. By providing these 
funds, Job Corps can significantly supplement the military's efforts to 
address unmet recruiting and retention needs through a 40-year 
successful residential education and training program for disadvantaged 
youth. Curricula would include the critical components valued by the 
military in grooming and advancing recruits to become high quality 
accession enlistments. Preference would be given to Job Corps centers 
located near military installations.

President's Community College Initiative
    The NJCA requests that a minimum of $10 million of President Bush's 
proposed $250 million fiscal year 2006 Community College Initiative 
(also called the President's Community-Based Job Training Grants) be 
dedicated to community colleges partnerships with Job Corps centers. 
The NJCA requests this modest portion within the U.S. Department of 
Labor's Employment and Training Administration proposed budget be 
designated to: (1) develop strategic partnerships with community 
colleges, business and industry leaders, and Job Corps centers to train 
students in high, growth, high demand industries; and (2) design ``dual 
enrollment'' programs based on reciprocal agreements between Job Corps 
and adjacent community colleges.
    The NJCA strongly believes it is fitting and proper for community 
colleges to work with Job Corps because both parties share the same 
basic goals of providing access and opportunity to disadvantaged 
Americans. Job Corps and community colleges also have the ability to 
partner with employers looking for higher-skilled workers. Numerous Job 
Corps centers have already established working relationships and 
participated with local community colleges to provide advanced career 
training, increased opportunity to pursue occupations in high-growth 
industries, and greater access to industry-recognized certification 
programs.

                               CONCLUSION

    As Job Corps looks to the future, we hope you agree that it remains 
a federal program that is worthy of America's support. The NJCA looks 
forward to working with members of this Committee to define, expand and 
advance this decade-long effort to tie Job Corps' training more closely 
to our nation's most critical labor needs. Even in these tough 
budgetary times when no federal program can be above scrutiny, Job 
Corps shines through with versatility of purpose and a record of 
success that can help America address its most serious challenges. Job 
Corps remains a beacon of hope for many young Americans and an 
excellent example of our government's role in helping all sectors of 
our society. Thank you for your strong support.
    The NJCA is a professional trade association comprised of business, 
labor, volunteer, advocacy, academic, and community organizations. All 
are joined in supporting the Association's mission ``to unite the Job 
Corps community through activities and services that strengthen the 
program for the benefit of students, staff and employers.''
                                 ______
                                 
            Prepared Statement of Rural Opportunities, Inc.

    On behalf of the Migrant and Seasonal Farmworkers in Pennsylvania, 
Rural Opportunities, Inc. (ROI) extends a sincere thank you to the Sub-
Committee for the opportunity to share our success as the statewide 
grantee funded by the United States Department of Labor under the 
Workforce Investment Act, Section 167--The National Farmworker Jobs 
Program (NFJP).
    In providing services to migrant and seasonal farmworkers, ROI's 27 
years of experience in Pennsylvania has clearly demonstrated that 
farmworkers are a ``special population'' that have unique needs that 
require not only basic skills, English-as-a-Second Language, and job 
training; but, access to services via outreach in rural communities at 
non-traditional hours of service provision where and when One-Stop 
services are virtually non-existent. Further, should these services be 
required, the language requirements to ensure access are often 
unavailable unless a ROI staff person is on site in the One-Stop.
    In painting a personal picture, examples may be that if a 
farmworker were accessing services in Philadelphia County, they may 
speak Khmer. If a farmworker were accessing services in Franklin County 
or Chester County, he/she may speak Creole and Spanish respectively. 
ROI has continuously hired bilingual staff that is culturally sensitive 
and skilled at working with the predominant farmworker population in 
the specific service-provision area; thus, ensuring access.
    With this said ROI has taken its responsibility seriously for the 
stewardship of the federal funds it is awarded by ensuring access to 
effective employment and training programs that not only ensure the 
transferability of skills, but future upward-mobility both within 
agriculture and out. ROI places a high priority on measuring and 
improving the efficiency and effectiveness of our program by collecting 
detailed data on our farmworker program participants through our 
Management Information System, by monitoring program results as they 
pertain to performance standards, and evaluating our net impact.
    ROI has always been a strong training provider. Thus, again, having 
the NFJP Program ``zeroed out'' for funding, when we are a premiere 
program that truly provides training to the hardest-to-serve, is 
unconscionable. Perhaps, one can better understand the impact of the 
NFJP Program through the words of a program graduate. Alfonso Lua, of 
Dunmoyer Trucking, Inc., states, ``When I came to the program several 
years ago, I had nothing. Rural Opportunities helped me get my 
Commercial Driver's License (CDL) and I became a truck driver. Now I 
own 13 rental properties. I am going to make almost $70,000 this year. 
The program is like a ladder you can use to better yourself. If you 
want to have success, you have to educate yourself and learn something 
new. That's why the program is there to help with this. It is an 
alternative to staying where you are''.
    Alfonso Lua was a program participant who had been a farmworker for 
many years; yet, had always dreamed of becoming a truck driver. In the 
typical One-Stop setting, Alfonso may not have been able to access CDL 
Training because of his, then, language limitations. ROI worked hand-
in-hand with Alfonso translating the parts of the truck from Spanish to 
English to ensure Alfonso clearly understood the translation. Further, 
ROI Staff provided on-site tutoring, ensuring a positive outcome. 
Another program participant, Madelyn Morales, a Department Manager at 
Wal-Mart, Inc. states, ``Thank you to Rural Opportunities, Inc. who 
believed in me and opened possibilities for me to become someone in 
life''. When program participants confront barriers in accessing 
employment that requires specialized training, ROI has the expertise to 
tailor a curriculum to an individual's needs. This is extremely 
important in working with the farmworker population.
    ROI also has taken the initiative, as a NFJP Grantee, to work hand-
in-hand with agricultural employers who often are overlooked in the 
One-Stop System. ROI has developed cross-training for agricultural 
upgrade taking harvesters into a variety of demand occupations. Without 
the services provided by ROI under the auspices of the NFJP program, 
these particular training services would be inaccessible. The 
significance of this can not be underestimated as an agricultural 
employer representative, Maria C. Serrano, Human Resource & Benefits 
Specialist of Giorgi Mushroom Company, states, ``We at Giorgi Mushroom 
Company have the practice of employee development and we provide 
advancement opportunities to motivate employees. In our harvesting 
department it is often hard to promote within, since they lack the 
skills for advancement. That is where Rural Opportunities, Inc. comes 
in. They help tremendously, companies like ours to help and motivate 
employees to pursue a different position within the company. Their NFJP 
Program allows our employees the opportunity to advance by providing 
the necessary resources to develop new skills, where there is no 
economic drain to the company. Quite the contrary, it helps our 
company. We have enjoyed a very good relationship with ROI in allowing 
us the opportunity so that we can pass this program on to our 
employees. Their programs have helped not only our employees become a 
better people and gain a new position, but also our company as a whole. 
ROI offers remarkable programs that work for both the company and 
employees by giving them the chance. Without these programs, no one 
wins. We strongly agree that ROI Programs benefit both parties 
involved; and we deeply support their efforts.''
    In closing, ROI believes our success speak volumes about the NFJP 
Program's success. We are just one of the NFJP Grantees that the 
Department of Labor's own assessment stipulates do excellent work every 
day. Let us not forget that Migrant and Seasonal Farmworkers already 
bring multiple barriers to the table. Let us not place another barrier 
in their path by eliminating the NFJP Program. We request the Sub-
Committee recognize the enormous potential of this program by 
maintaining the NFJP Program in the Appropriations for the Department 
of Labor for 2006; thus, ensuring that the services this population so 
desperately needs is funded.
    Thank you for this opportunity to present testimony today.
                                 ______
                                 

                DEPARTMENT OF HEALTH AND HUMAN SERVICES

  Prepared Statement of the Academic Family Medicine Advocacy Alliance

    Mr. Chairman, the Society of Teachers of Family Medicine, the 
Association of Departments of Family Medicine, the Association of 
Family Medicine Residency Directors, and the North American Primary 
Care Research Group, thank you for the opportunity to provide this 
statement for the record on behalf of funding for family medicine 
training, and the Agency for Health Care Research and Quality (AHRQ).

  HEALTH PROFESSIONS: THE PRIMARY CARE MEDICINE AND DENTISTRY CLUSTER

    Mr. Chairman, the Academic Family Medicine Advocacy Alliance would 
like to thank you and this committee for your commitment to these 
programs. We very much appreciate the funding included in the fiscal 
year 2005 appropriations funding bill, especially in light of fiscal 
constraints. Family medicine training programs are funded under Section 
747, the Primary Care Medicine and Dentistry cluster, of Title VII of 
the Public Health Service Act. We ask that you continue your support 
for family medicine training, and restore the appropriations level for 
section 747, the Primary Care Medicine and Dentistry Cluster, to fiscal 
year 2003 levels of $92 million, a small increase of about $3 million.
    This statement is designed to show the committee how its investment 
is paying off. This statement will discuss the success of these 
programs and include recommendations about what still needs to be done. 
As you look at all the opportunities you have to fund domestic health 
programs you need to be able to make judgments about the value and 
utility of these programs. We have been asked in various venues to show 
proof that these funds actually do what they are designed to do. We 
must show that this money makes a difference. In this statement we 
intend to do just that. In addition, we believe Congress also needs to 
understand the unmet needs that exist in our nation--needs health 
professions programs can successfully help address.

President's Budget Request for Fiscal Year 2006 Once Again Zeros Out 
        Primary Care Funding
    The President's budget zeroes out funding for the Primary Care 
Medicine and Dentistry cluster. In addition, the proposal includes only 
$11 million for all Title VII Health Professions programs, a sharp cut 
from current level funding of $308 million.

Family Medicine Training Programs Are A Success
    First, let's take a look at health professions training--
specifically family medicine training. These programs are producing the 
outcomes that Congress has requested. A recent study (Family Medicine, 
June 2002), by the Robert Graham Center For Policy Studies showed that 
federal funding through Title VII of family medicine departments, 
predoptoral programs, and faculty development hps made a difference. 
The study measured the differences in career choices made by students 
exposed to Section 747 funds compared to those who were not, both 
within the same school and in different schools. This research found 
that section 747 funding is associated with:
  --54 percent increase in students going into family practice
  --25 percent more into primary care
  --34 percent more into rural underserved counties
    The increased number of family physicians associated with Title VII 
funding between 1978-1993 was found to be about 7,000. If the same 
continued for the next decade, there would be 12,000 additional family 
physicians attributable to Section 747 funding in 2003. We must 
conclude from this data that this funding means that thousands of 
physicians are making different career choices, choices that positively 
affect millions of patients in underserved areas and in primary care. 
Moreover, if this money were to ``go away'' fewer students would be 
making these career choices.

Funding primary care training programs improves the health of America
    A greater supply of primary care physicians is associated with 
positive health outcomes due to early detection and an increased 
integration of care and oversight. With the associated rise in primary 
care physicians cited above, we can extrapolate from other sources that 
this increase could mean:
  --4,600 cases of colon cancer prevented and 1,400 deaths from colon 
        cancer prevented.
  --7,400 cases of cervical cancer prevented and 3,200 deaths from 
        cervical cancer prevented.
  --24,000 individuals quit smoking.
  --7,700 additional physicians serving in rural areas and 970 
        additional physicians serving in HPSAs.
  --1.2 million deaths prevented.

Primary care is cost effective
    A study in Health Affairs (April 2004) demonstrates that the 
associated measures in primary care physicans resulting from Title VII, 
section 747 leads to an estimated $320 billion in saved health care 
expenses and 1.2 million lives saved over 26 years. For example, a 
study in the New England Journal of Medicine (Feb. 1996) looked at 
outcomes and costs of people who came to a primary care physician, a 
chiropractor, or an orthopedic surgeon for their back pain. It was 
determined that the patients all had the same outcome regardless of who 
provided care, but the primary care physicians' care cost $194 per 
person less. According to a study in the Journal of Family Practice 
(May 1998) because back pain is so common, a primary care physician can 
expect to see 82 cases per year; therefore, Title VII funds can be 
thought to have had an estimated overall health care cost savings of 
$2.4 billion from back pain alone.

Loss of funding for family medicine training would cause tremendous 
        impact on service to the underserved
    A study by the Robert Graham Center looked at counties designated 
as HPSAs to determine the degree to which the United States relies on 
family physicians in comparison to more other specialty. Of the more 
than three thousand counties in the United States, 784 are designated 
HPSAs. In a hypothetical exercise, the study removed all family 
physicians from the U.S. counties. Without family physicians, there 
would be 1,184 HPSAs--a 43 percent increase.

Family Physicians Staff the Nation's Community Health Centers (CHCs)
    The President's fiscal year 2006 budget would provide approximately 
$2 billion to CHCs in fiscal year 2006, an increase of $304 million. 
Since nearly one-half of the physicians who staff the nation's CHCs are 
family physicians, support for Section 747 would mean more trained 
doctors for those centers.

Family Physicians Have an Economic Impact on States
    On average, the income that comes into a community due to the 
presence of one family physician, and the additional jobs that result 
from his or her practice, amounts to approximately:
  --$1.2milllion in rural areas, and,
  --$0.9 million in urban areas.
    (Oklahoma Physician Manpower Training Commission, October 2003.)

What Is The Unmet Need? Why Must We Continue To Fund And Grow These 
        Programs?
    According to a study by Politzer, et al (The Journal of Rural 
Health, Winter,1999) Title VII funding is key to ending HPSAs. This 
funding has led to the time needed for HPSA elimination to decrease to 
15 years. Doubling the funding for these programs would decrease the 
time for HPSA elimination to as little as 6 years.
    According to the study, without this funding, not only would HPSAs 
not be eliminated, but the number of shortage areas would continue to 
grow. Moreover, success has been attained by an allocation of funds 
more favorable to family medicine than the other two primary care 
specialties.
    Title VII funding has indeed accomplished many of the objectives 
for which it was designed:
  --Funding of innovative projects
  --Providing ``seed money'' for the start-up of new projects
  --The creation and maintenance of departments of family medicine in 
        the nation's medical schools
  --The development of 3rd year clerkships in family medicine
  --The increase in students selecting primary care residencies from 
        those schools with funded family medicine departments and 3rd 
        year clerkships
  --The increased rate of graduates from Title VII funded projects 
        entering practice in medically underserved areas (MUAs), with a 
        resultant reduction in the time required for Health Professions 
        Shortage Area (HPSA) elimination

Section 747 Advisory Committee Recommends Higher Funding
    In 1998, Congress established an Advisory Committee to review and 
make recommendations on Section 747. The Advisory Committee on Training 
in Primary Care Medicine and Dentistry (ACTPCMD) recently released its 
recommendations to Congress and the Secretary of the Department of 
Health and Human Services. The first recommendation urges greatly 
expanding federal support for Section 747 to $198 million. The 
Committee notes the growing need for primary care providers, as well as 
the success of Title VII funded programs.
    The training enterprise that does not value primary care either 
financially or otherwise is a key part of the problem. Title VII funds 
that support the infrastructure and stability of family medicine 
departments in medical schools have to be sustained in order to keep 
producing the current levels of primary care physicians and, more 
specifically, those who will practice in rural and other underserved 
areas. Clearly, the programs of Title VII are on the right track toward 
meeting the health care challenges of the 21st century. So, while we 
believe that current funding must be maintained, more needs to be done.

Proposed Performance Measures need to be redefined
    The current proposed performance measures are neither measurable 
nor appropriate. Consequently, assessments of effectiveness of the 
programs based on these measures are highly flawed.
    For example, the target set for the proportion of underrepresented 
minorities (URMs) and disadvantaged students in health professions 
funded programs is set at 50 percent for 2005, even though only 12.5 
percent of current medical school graduates are URMs, and data on 
disadvantaged backgrounds is not routinely, or accurately collected. 
The concept of disadvantaged background varies based on income related 
to family size, or is based on a vague--non-quantifiable--notion of 
persons growing up in environments that don't prepare them to enter 
health professions schools.
    In 2000 approximately 12.5 percent of the medical degrees awarded 
in the United States went to underrepresented minorities. For all of 
health professions minority representation has risen from 8.3 percent 
in 1985 to 11.7 percent in 2000. Given this data, it's simply 
unrealistic to expect any program to increase its minority 
representation in one year from 12.5 percent to 25 or 50 percent.

Primary Care Training Programs React Quickly to Emerging Health 
        Challenges
    Title VII dollars have created an infrastructure that allows 
educational programs to respond to contemporary health care issues. 
Specifically, the ACTPCMD report states that:

    ``Investment in education to provide primary care has effects that 
touch the largest number of people in the country. No other group of 
health care providers can exert such a broad influence on the kind and 
quality of health care in the United States. Primary care training 
programs are ideally positioned to react quickly to meet ever-changing 
health care needs and issues, whether they are related to HIV/AIDS, 
growing numbers of elderly with chronic illnesses, implications of the 
modern genetics revolution, the threat of bioterrorism, or other issues 
that will continue to emerge and demand rapid educational intervention. 
Thus, this infrastructure is uniquely able to play a pivotal role in 
bringing emerging issues in health care to the population at large.''

    Mr. Chairman, we know that this committee has to weigh the value of 
funding various programs against each other. We hope that the evidence 
we have presented here will bring the committee to the conclusion that 
funding spent on these programs would bring value for the money and 
would be money exceptionally well spent.

   FUNDING FOR THE AGENCY FOR HEALTH CARE RESEARCH AND QUALITY (AHRQ)

    Mr. Chairman, once again, we thank you and this committee for 
funding this important agency. It is apparent that the key federal 
agency available to fund primary care research is the Agency for 
Healthcare Research and Quality (AHRQ). In its recent reauthorization, 
Congress established within the Agency a Center for Primary Care 
Research to ``serve as the principal source of funding for primary care 
practice research in the Department of Health and Human Services.'' The 
statute defined primary care research as research that ``focuses on the 
first contact when illness or health concerns arise, the diagnosis, 
treatment or referral to specialty care, preventive care, and the 
relationship between the clinician and the patient in the context of 
the family and community.

Funding Request For AHRQ
    We recommend appropriations of $440 million for the Agency for 
Healthcare Research and Quality (AHRQ) in fiscal year 2005. AHRQ 
conducts primary care and health services research geared to physician 
practices, health plans and policymakers that helps the American 
population as a whole.

President's Budget Request for fiscal year 2006 AHRQ Funding
    The President's budget includes $316 million for AHRQ, which is the 
same as actual funding for fiscal year 2005. This figure does not 
recognize the $53 million in authorization that Congress provided AHRQ 
in the Medicare Modernization Act to study ``clinical effectiveness and 
appropriateness of specific health services and treatments.''

What Does AHRQ Do?
    AHRQ's three goals are to (1) improve physician practice and 
Americans' health outcomes, (2) improve the quality of health care 
(e.g., patient safety), and (3) improve the health care system (e.g., 
increase access and reduce costs). In brief, AHRQ ``helps to improve 
the health and health care of the American people . . .'' (AHRQ report, 
March, 2001).

How Does AHRQ Meet Its Goals?
    AHRQ translates research findings from basic science entities like 
the National Institutes of Health into information that doctors can use 
every day in their practice with their patients. Another key function 
of the agency is to support research on the conditions that affect most 
Americans.

AHRQ Translates Research into Everyday Practice
    Congress has provided billions of dollars to the National 
Institutes of Health, which has resulted in important insights in 
preventing and curing major diseases. AHRQ takes this basic science and 
produces information that physicians can use every day in their 
practices. AHRQ also distributes this information throughout the health 
care system. In short, AHRQ is the link between research and the 
patient care that Americans receive. An example of this link is basic 
science research showing that beta blockers reduce mortality. AHRQ 
supported research to help physicians determine which patients with 
heart attacks would benefit from this medication.

AHRQ Supports Research on Conditions Affecting Most Americans
    Most Americans get their medical care in doctors' offices and 
clinics. However, most medical research comes from the study of 
extremely ill patients in hospitals. AHRQ studies and supports research 
on the types of illness that trouble most people. AHRQ looks at the 
problems that bring people to their doctors every day--not the problems 
that send them to the hospital. For example, AHRQ supported research 
that found older antidepressant drugs are as effective as new 
antidepressant medications in treating depression, a condition that 
affects millions of Americans.

Institute of Medicine Recommends $1 Billion for AHRQ
    The Institute of Medicine's report, Crossing the Quality Chasm: A 
New Health System for the 21St Century (2001), recommended $1 billion a 
year for AHRQ to ``develop strategies, goals, and actions plans for 
achieving substantial improvements in quality in the next 5 years. `` 
The report looked at redesigning health care delivery in the United 
States. AHRQ is a linchpin in retooling the American health care 
system.
       recommendations for family medicine training and research
    The Academic Family Medicine Advocacy Alliance have two main 
recommendations for the fiscal year 2006 Labor/HHS Appropriations bill. 
They are as follows:
  --We ask that you continue your support for family medicine training, 
        and bring the appropriations level for section 747, the Primary 
        Care Medicine and Dentistry Cluster, up to fiscal year 2003 
        levels of $92 million, a small increase of approximately $3 
        million.
  --In order to support critical practice-oriented primary care 
        research, and to ensure that existing grants and contracts will 
        not be cut, we are asking that the Agency for Healthcare 
        Research and Quality be funded at $440 million.
                                 ______
                                 
                   Prepared Statement of AIDS Action

    I am pleased to submit this testimony to the members of this 
committee on the importance of adequate funding for the fiscal year 
2006 HIV/AIDS portfolio. The federal government's commitment to funding 
research, prevention, and care and treatment for those living with HIV 
is critical. We would not be where we are today in responding to this 
epidemic without the federal government's 24-year commitment to funding 
HIV programs here at home. AIDS Action is dedicated to working with the 
federal government to make sure it sustains this commitment.
    Since 1984, AIDS Action's goals have been clear: to ensure 
effective, evidence-based HIV care, treatment, and prevention services; 
to encourage the continuing pursuit of a cure and a vaccine for HIV 
infection; and to support the development of a public health system 
which ensures that its services are available to all those in need. 
Furthermore, our commitment to working toward these goals is constant: 
AIDS Action is here Until It's Over.
    For over 20 years AIDS Action Council, through its member 
organizations and the greater public health community, has worked to 
enhance HIV prevention programs, research protocols, and care and 
treatment services. An important part of this collaborative effort has 
been working to secure comprehensive federal resources to address 
community needs.
    It is therefore on behalf of AIDS Action Council's diverse 
membership, comprising community-based AIDS service organizations, 
public health departments, and other organizations concerned with HIV 
research, education, and advocacy, that I bring your attention to some 
of the issues impacting the funding picture for fiscal year 2006.
    Despite the good news of improved treatments, which have made it 
possible for people with HIV disease to lead longer and healthier 
lives, stark realities remain:
  --There is neither a cure nor a vaccine for HIV.
  --Current treatments do not work for everyone, and some have 
        debilitating side-effects.
  --There are nearly 1 million people living with HIV in the United 
        States.
  --Access to health care is unequal.
  --Half a million HIV positive Americans are not receiving regular 
        medical care.
    The Ryan White Comprehensive AIDS Resources Emergency (CARE) Act, 
which is administered by the Health Resources and Services 
Administration (HRSA) and is funded by this subcommittee, provides 
services to more than 533,000 people living with and affected by HIV 
throughout the United States and its territories. It is the single 
largest source of federal funding solely focused on the delivery of HIV 
services; it provides the framework for our national response to the 
HIV epidemic. As such, CARE Act programs have been critical to reducing 
the impact of the domestic HIV epidemic. Yet, providers of HIV services 
are working from a deficit. In recent years, CARE Act funding has been 
decreased through across-the-board rescissions. The .80 percent 
rescission that was executed on all non-defense and non-homeland 
security discretionary spending during the final negotiations for the 
fiscal year 2005 bill had a devastating impact on the HIV/AIDS 
portfolio in general, and on the Ryan White CARE Act in particular. 
Moreover, President Bush's budget for fiscal year 2006 requests just 
one increase to the CARE Act--an additional $10 million for the AIDS 
Drug Assistance Program (ADAP).
    Now in its fifteenth year, the Ryan White CARE Act is scheduled for 
reauthorization in this session of the 109th Congress, a fact President 
Bush made known to all Americans in his State of the Union address, 
when he voiced his strong support for reauthorization. He stated, 
``Because HIV/AIDS brings suffering and fear into so many lives, I ask 
you to reauthorize the Ryan White Act to encourage prevention, and 
provide care and treatment to the victims of that disease. And as we 
update this important law, we must focus our efforts on fellow citizens 
with the highest rates of new cases, African American men and women.''
    In June 2004, while discussing the global HIV epidemic, our 
President stated with confidence, ``There's no doubt we can bring hope 
in all parts of the world, not only in Africa, but in neighborhoods in 
our own country where people wonder what the American Dream means.''
    On this point, AIDS Action Council concurs with President Bush: 
hope can be brought to all parts of the world. However, we respectfully 
disagree with the President on what will be needed to ensure hope here 
at home. The delivery of hope relies on the delivery of health care to 
all neighborhoods in this great nation--an effort that will not be 
sufficiently supported by the funding levels the President has 
requested for the HIV/AIDS portfolio in his fiscal year 2006 budget 
request.
    Clearly, it will take more than a $10 million increase for ADAP, a 
single program within the Ryan White CARE Act, to ensure HIV positive 
Americans receive the care and services necessary to remain healthy and 
productive. It is my hope that the Congress, through the good work of 
this subcommittee, will recognize and address the true funding needs of 
the care programs within the domestic HIV/AIDS portfolio.
    Last year, there was an overall increase of 14.5 percent in the 
estimated number of living AIDS cases among the fifty-one hardest hit 
eligible metropolitan areas (EMAs) in the United States, with increases 
as high as 22.6 percent in some areas. Yet fiscal year 2004 funding 
allocations for Title I of the Ryan White CARE Act, which is designed 
to provide services to these areas, were reduced. Forty of the fifty-
one jurisdictions experienced a decrease in funding, with some 
decreases as high as 15 percent. Similar reductions continued in fiscal 
year 2005 when thirty-three of the EMAs experienced a funding decrease, 
the highest being 14 percent.
    Some of the services provided under Title I include physician 
visits, laboratory services, case management, home-based and hospice 
care, nutrition services, and substance abuse and mental health 
services. According to the most recent data available from the Health 
Resources and Services Administration (HRSA), more than half (51.8 
percent) of Title I funds are allocated to core health care services, 
and more than one-third (35.0 percent) are allocated to services 
closely associated with medical care (including medically-based housing 
and care coordination and referral). These services are critical to 
ensuring patients have access to, and can effectively utilize, life-
saving therapies.
    Title II of the CARE Act ensures a foundation for HIV related 
health care services in each state and territory, including the 
critically important AIDS Drug Assistance Program (ADAP) and Emerging 
Communities Program. Title II base grants (excluding ADAP and Emerging 
Communities) decreased from $292,279,000 in fiscal year 2004 to 
$282,597,700 in fiscal year 2005 for a total decrease of over $9 
million ($9,681,300).
    Funding for Emerging Communities remained stable at $10 million, 
but it was divided among an increased number of communities. The $5 
million ``tier one'' award was divided among four cities in fiscal year 
2004 and among five cities this fiscal year, which resulted in funding 
reductions. Funding cuts for the original four cities ranged from 
$200,000 to $264,000 so that a fifth could receive $836,000. This type 
of funding variability is not conducive to providing consistent HIV 
care in emerging communities.
    We applaud the President's recommended increase of $10 million for 
ADAP in his fiscal year 2006 budget. ADAP provides medications for the 
treatment of individuals with HIV who do not have access to Medicaid or 
other health insurance. According to the National ADAP Monitoring 
Project, approximately 85,825 clients received medications through ADAP 
in June 2003.
    A single drug in the multiple-drug regimen of highly active anti-
retroviral therapy (HAART), the standard of care for HIV disease, may 
cost as much as $15,000 annually. Drugs to treat other infections may 
bring the annual cost for a single HIV patient to $40,000 a year. With 
the increasing number of people living with AIDS, the number of newly 
diagnosed infections fixed at 40,000 per year, and cuts in funding to 
state Medicaid programs, pressures on ADAP are increasing. Over the 
years, ADAP has proven to be a remarkable program, allowing people to 
receive the care and treatment they need. Consequently, AIDS Action 
urges Congress both to fully fund ADAP and to consider restructuring 
ADAP to ensure universal access to all needed drugs, regardless of 
state of residence. Moreover, many of the medicines supplied through 
ADAP reach maximum efficacy only in conjunction with proper nutrition. 
Therefore, we urge Congress to continue funding for Ryan White CARE Act 
nutrition programs, funded predominantly through Titles I and II.
    Funding for Title III of the Ryan White CARE Act is awarded under 
the Early Intervention Services program. Title III grant recipients 
include community-based clinics and medical centers, hospitals, public 
health departments, and universities in 22 states and the District of 
Columbia. The grants are targeted toward new and emerging sub-
populations impacted by the HIV epidemic. The Title III funds are 
particularly needed in rural areas where the availability of HIV care 
and treatment is still relatively new. Urban areas also continue to 
need Title III funds to ensure that emerging populations within these 
areas are not shortchanged as grantees struggle to meet the needs of 
previously identified HIV positive populations.
    The Title IV portion of the Ryan White CARE Act is awarded under 
the Comprehensive Family Services Program to provide comprehensive care 
for HIV positive women, infants, children, and youth, as well as their 
affected families. These grants fund the planning of services that 
provide comprehensive HIV care and treatment and the strengthening of 
the safety net for HIV positive individuals and their families.
    If we are to comprehensively address the HIV care and treatment 
crisis in the United States, we must never forget the smaller--but 
nonetheless significant--programs in the CARE Act: AIDS Education and 
Training Centers (AETC), dental reimbursement, and special projects of 
national significance (SPNS). Like nearly every other CARE Act program, 
AETC and SPNS have been affected by diminishing federal funding.
    Given that the President continues to support increases in funding 
to, and a greater reliance on, community health centers nationwide to 
provide care to the uninsured and under insured, we now find ourselves 
simultaneously faced with a pool of community providers who need to be 
educated about proper HIV care. The role of the AETCs is invaluable in 
ensuring that such education is available to physicians who are being 
asked to treat the increasing numbers of HIV positive patients who 
depend on them for care. Dental care is another crucial part of the 
spectrum of services needed by people living with HIV disease. Oral 
health is one of the first aspects of health care to be neglected by 
those who cannot afford, or do not have access to, proper medical care. 
Furthermore, oral health problems are often one of the first 
manifestations of HIV disease. Reimbursement offered by this CARE Act 
program allows dental education institutions to offer their much needed 
services to people living with HIV.
    As this testimony suggests, rising infections and strapped care 
systems necessitate the research and development of innovative models 
of care. The SPNS program is designed for this very purpose and must 
therefore receive sufficient funding.
    AIDS Action believes the entire Ryan White CARE Act portfolio needs 
$3.2 billion for fiscal year 2006 to address the true needs of the 
approximately 1 million people that the Centers for Disease Control and 
Prevention (CDC) estimates are living with HIV in the United States. 
President Bush has requested just over $2 billion ($2,083,342,088).
    The Housing Opportunities for People with AIDS (HOPWA) program, 
administered by the U.S. Department of Housing and Urban Development 
(HUD), is another integral program in the HIV care system. Stable 
housing is absolutely critical to the ability of people living with HIV 
to access and adhere to an effective HIV treatment plan. Without 
housing, one cannot appropriately store medicine or food and often 
cannot consistently access clean water or clean bathrooms. Furthermore, 
when one has no housing, the need for shelter often rises above the 
need to take care of one's HIV infection, which places the individual 
at higher risk of becoming ill and infecting others.
    AIDS Housing of Washington has estimated that approximately one-
third to one-half of people living with HIV are homeless, cannot afford 
their current housing, or are at risk of becoming homeless. HOPWA is 
the only program that specifically addresses the housing needs of 
people living with HIV. Despite the importance of the program, HOPWA's 
funding has been dramatically cut. In fiscal year 2005, HOPWA was 
funded at $281.7 million ($281,728,000), down from $294.8 million 
($294,800,000) in fiscal year 2004--a cut of more than $13 million. In 
his fiscal year 2006 budget proposal, the President proposes an 
additional cut to the program of almost $14 million, to $268 million 
($268,000,000) total. AIDS Action believes that $385 million should be 
appropriated to the HOPWA program for fiscal year 2006 to address the 
needs of HIV positive people requiring housing assistance.
    HIV continues to be an ongoing public health crisis. Despite 
treatment advances, there was a 2 percent increase in progression from 
HIV to an AIDS diagnosis between 2001 and 2002--the first such increase 
in several years. AIDS-defining illnesses are the leading cause of 
death among African-American women between the ages of 25 and 34 and 
they are the third leading cause of death among all African Americans 
in this age group. They are the sixth leading cause of death for 
Latinos and whites in this age group.
    According to CDC estimates contained in the agency's December 2003 
HIV/AIDS Surveillance Report, 929,985 cumulative cases of AIDS have 
been diagnosed in the United States, with a total of 524,059 deaths 
since the beginning of the epidemic. The CDC also estimates that 
between 850,000 and 950,000 people are living with HIV/AIDS in the 
United States, and approximately one-quarter of them, or 180,000-
280,000 people, are unaware of their status and could unknowingly 
transmit the virus to another person.
    For several years, estimates of new infections have remained at 
40,000 per year, compared to an estimated 180,000 new infections in the 
mid 1980s: an extraordinary achievement in efforts against HIV.
    To further reduce new infections, the CDC implemented a new 
initiative in April of 2003 called Advancing HIV Prevention: New 
Strategies for a Changing Epidemic (AHP), consisting of four key 
strategies:
  --Make HIV testing a routine part of medical care.
  --Implement new models for diagnosing HIV infection outside medical 
        settings.
  --Prevent new infections by working with persons diagnosed with HIV 
        and their partners.
  --Decrease mother-to-child transmission of HIV.
    The Urban Coalition for HIV/AIDS Prevention (UCHAPS), which 
represents the six cities that are directly funded by the CDC for HIV 
prevention and is an AIDS Action member, has responded positively to 
the AHP Initiative. UCHAPS members are working with the CDC to 
implement the Initiative effectively in their respective communities.
    This Initiative, however, does not supersede the HIV Prevention 
Strategic Plan that was published by the CDC in 2001, which stated a 
goal of reducing by half the number of new HIV infections by 2005. 
These strategies, though innovative, require additional funding for 
implementation. AIDS Action Council estimates that the CDC HIV/AIDS, 
STD, and TB prevention programs will need $2.33 billion in fiscal year 
2006 to address the true unmet needs of prevention in HIV/AIDS, STDs, 
and TB. AIDS Action Council therefore is concerned that the President 
limited his fiscal year 2006 request for the CDC HIV/AIDS, sexually 
transmitted disease (STD), and tuberculosis (TB) prevention programs to 
$956,283,000--a request that is $4,428,000 less than what the CDC 
received in fiscal year 2005.
    How will we keep apace of the epidemic and meet--albeit belatedly--
the goal of limiting new infections to 20,000 annually without an 
immediate infusion of new resources, new partnerships, and new funding? 
Without such an infusion, this country will continue to face 
significant challenges in providing urgent care and treatment to HIV 
positive people.
    Research on the domestic HIV epidemic is vital to the control of 
the disease. Research that includes biomedical, behavioral, and social 
services is the cornerstone of HIV prevention research. The research 
agenda for HIV prevention science at the Office of AIDS Research (OAR), 
part of the National Institutes of Health (NIH), targets interventions 
to at-risk individuals, both infected and uninfected, to reduce HIV 
transmission. It is essential that OAR continue its groundbreaking 
research to secure a vaccine that will keep HIV negative people 
negative. It is equally important that this office continue to research 
promising treatment vaccines that may help HIV positive people maintain 
optimal health. The research on microbicides for vaginal and anal 
sexual intercourse is critical as well. The use of microbicides by the 
receptive partner will give them power over their personal health when 
they cannot negotiate condom use with their partner to protect 
themselves from HIV transmission.
    The research at NIH on new medications for drug resistant strains 
of HIV is also critical. The current success of treatment for people 
living with HIV and AIDS is due in large part to early research 
investments in new drugs that now have improved the health of people 
living with HIV. The United States must continue to take the lead in 
the research and development of new medicines to treat current and 
future strains of HIV. Primary prevention of new HIV infections must 
remain a high priority in the field of research.
    Behavioral research to help individuals delay the initiation of 
sexual relations, limit the number of sexual partners, limit the 
consumption of alcohol and drugs prior to sexual relations, and move 
from drug use to drug treatment are all critically important in finding 
a solution to the spread of HIV in the United States. NIH's Office of 
AIDS Research is critical in supporting all of these research arenas. 
Increased funding is necessary to ensure that the resources needed to 
address all the research concerns are available both now and in the 
future. Commitment in research will ultimately decrease the care and 
treatment dollars needed if HIV continues to spread at the current 
rate.
    AIDS Action is concerned that President Bush has only requested 
$2,932,992,000 for the AIDS portfolio at NIH. AIDS Action believes the 
National Institutes of Health AIDS portfolio must be funded at $3.327 
billion for fiscal year 2006.
    On behalf of all HIV positive Americans, and those affected by the 
disease, AIDS Action Council asks that you carefully consider the 
ramifications of the President's suggested cuts to the domestic HIV/
AIDS portfolio. Help us save lives by allocating sufficient funds to 
address this nation's epidemic.
                                 ______
                                 
    Prepared Statement of the American Academy of Family Physicians

    The 94,000-member American Academy of Family Physicians submits 
this statement for the record to the Senate Appropriations Subcommittee 
on Labor/Health and Human Services, Education and Related Agencies. Our 
statement is made in support of the Section 747 Primary Care Medicine 
and Dentistry Cluster. The Academy also supports the Agency for 
Healthcare Research and Quality (AHRQ) and rural health programs.

        SECTION 747 PRIMARY CARE MEDICINE AND DENTISTRY CLUSTER

Family Medicine Training
    Section 747 is the only federal program that funds family physician 
training. The law requires the program to meet two goals: (1) increase 
the number of primary care physicians (family physicians, general 
internists and general pediatricians) and (2) boost the number of 
people to provide care to the underserved. Regarding family medicine 
specifically, Section 747 offers competitive grants for training 
programs in medical school and in residency programs.
    The fiscal year 2005 spending bill provided $89 million to Section 
747, a figure that was $3 million below the fiscal year 2003 levels, 
which is the highest figure the program has received in the last 
several years. Unfortunately, the President's fiscal year 2006 budget 
provided zero dollars for the program. In contrast, the congressionally 
established Advisory Committee on Training in Primary Care Medicine and 
Dentistry, which was set up solely to evaluate these programs, 
recommended significantly more funding: $198 million.
    Family physicians are the specialists trained to provide 
comprehensive, coordinated and continuing care to patients of both 
genders and all ages and ethnicities, regardless of medical condition. 
These residency-trained, primary care physicians treat babies with ear 
infections, adolescents who are obese, adults with depression and 
seniors with multiple, chronic illnesses. And because they focus on 
prevention, primary care, and integrating care for patients, they are 
able to treat illnesses early and cost-effectively and when necessary, 
they help patients navigate our complex health system and find the 
right subspecialists.

Section 747 and Rural and Underserved Areas
    In the last few years, there has been a great deal of interest in 
whether Section 747 actually meets its statutory goals, and 
specifically whether or not more physicians are practicing in rural and 
underserved areas as a result of the program. Due to this concern, the 
Robert Graham Center for Policy Studies studied medical schools 
receiving Section 747 family medicine funds and concluded that these 
programs met the law's requirements. According to this research, the 
trainees exposed to Section 747 funding while in these schools were 
more likely to:
  --Practice in family medicine or primary care;
  --Practice in a rural area; or
  --Practice in a whole county Primary Care Health Professions Shortage 
        Area (HPSA) (i.e., a county with inadequate numbers of family 
        physicians, general pediatricians, general internists or 
        obstetrician/gynecologists).
    More specifically, according to this research, students with any 
exposure to Section 747 were 25 percent more likely to go into a 
primary care HPSA and 34 percent more likely to go to a rural county to 
practice. Moreover, the exposure of students to Section 747 funding 
between 1978-1993 was associated with nearly 4,000 additional primary 
care physicians in rural areas and 500 additional physicians in HPSAs 
than would have otherwise occurred. This research showed that Section 
747, was, in fact, meeting the goals of the law.

Preventing HPSAs
    Along a similar vein, another study by the Robert Graham Center 
looked at counties designated as HPSAs. The research showed that the 
United States relies on family physicians more than any other medical 
specialty. For example, of the more than three thousand counties in the 
United States, 784 are designated HPSAs. In a hypothetical exercise, 
the study removed all family physicians from the U.S. counties and 
found that without these specialists, there would be 1,184 HPSAs--a 43 
percent increase. Section 747 grants contribute to bringing health care 
to underserved areas.

Family Physicians for Community Health Centers and NHSC
    Family physicians also play a major role in staffing the nation's 
Community Health Centers (CHCs) and National Health Service Corps 
(NHSC). The Academy strongly supports the Administration's commitment 
to funding increases for these programs. However, we believe that 
increasing funding for CHCs and the NHSC is only a partial solution. 
Without support for family physician training, there will be fewer 
physicians who work in these centers or practice in underserved areas. 
Thousands of family physicians will be needed if the necessary number 
of CHCs sites and NHSC staff is to be realized.
    In fact, in 2003, Community Centers depended on primary care 
physicians for 95 percent of their physician staffing, over half of 
whom were family or general practice physicians. And, since 1971, the 
National Health Service Corps has placed more than 18,000 health care 
providers in underserved areas: almost half of the NHSC doctors were 
family physicians. Support for CHCs and the NHSC must go in tandem with 
funding for Section 747.

Lower Health Care Costs and Improved Quality
    As the only federal program aimed at producing more generalists, 
Section 747 plays a role in lowering our nation's health care costs and 
increasing the quality of U.S. health care. For example, an article in 
Health Affairs (April 2004) demonstrated that states that spent more on 
Medicare had lower quality of care. There were two reasons for this 
result: states' expensive health care did not improve patient 
satisfaction, or, outcomes (e.g., people who were admitted to intensive 
care in the last 6 months of their life.)
    The second reason was also important: the authors found the makeup 
of the health care workforce made a difference. In fact, more primary 
care doctors in a state meant higher quality care and lower cost. In 
contrast, more specialists and fewer generalists led to lower quality 
and higher costs. And, just a small increase in the number of 
generalists in a state was associated with a large boost in that 
state's quality ranking.
    An article in a more recent edition of Health Affairs (March 2005), 
``The Effects of Specialist Supply on Populations' Health: Assessing 
the Evidence'' went even further. This piece stated that there is a 
``negative relationship between the supply of primary care physicians 
and death from stroke, infant mortality and low-birthweight, and all-
cause mortality.'' The article went on to say that just one more 
primary care physician per 10,000 people was associated with a decrease 
of 34.6 deaths per 100,000 population.
    The article also cited breast cancer research for the state of 
Florida, which indicated that ``each tenth-percentile increase in 
primary care physician supply is associated with a statistically 
significant 4 percent increase in odd of early-stage breast cancer. `` 
Statistics were similar for other types of cancers: there was a 
relationship between early identification and the supply of primary 
care physicians. Numerous other research was included in the Health 
Affairs article indicating that a higher ratio of primary care 
physicians to populations led to better health outcomes. These data 
support the need for additional funding for Section 747, the only 
federal program that produces primary care physicians.

Economic Impact
    In 2003, the Oklahoma Physician Manpower Training Commission 
studied the amount of income that comes into a community due to the 
presence of one family physician, and the additional jobs that result 
from his or her practice. Their research showed that the figure was 
approximately $1.2 million in rural areas and $0.9 million in urban 
areas.

The Overspecialized U.S. Physician Workforce
    Unlike all other developed countries, the United States does not 
have a primary care-based health care system. While other developed 
countries have about equal numbers of primary care doctors and 
subspecialists, less than one-third of the U.S. physician workforce is 
primary care doctors (including family physicians). As a result, about 
two-thirds of the U.S. physician workforce is made up of 
subspecialists.
    In addition, compared to those in other developed countries, the 
United States spends the most per capita on healthcare--but has the 
worst healthcare outcomes. More than 20 years of evidence have shown 
that a health system based on primary care produces greater health and 
economic benefits. Boosting support for Section 747, which funds 
training for family physicians and for other primary care disciplines, 
could improve the health of patients in the United States to enjoy 
those benefits.

              AGENCY FOR HEALTHCARE, RESEARCH AND QUALITY

    The Academy recommends $440 million for the Agency for Healthcare, 
Research and Quality (AHRQ). A major purpose of AHRQ is to conduct 
primary care and health services research geared to physician 
practices, health plans and policymakers. What this means is that the 
agency translates research findings from basic science entities like 
the National Institutes of Health (NIH) into information that doctors 
can use every day in their practices. Another key function of the 
agency is to support research on the conditions that affect most 
Americans.
    More recently, AHRQ has become the lead federal agency for research 
on comparative clinical effectiveness; information technology; and 
patient safety. For example, the Medicare Modernization Act asked AHRQ 
to study the ``clinical effectiveness and appropriateness of specified 
health services and treatments,'' and to use this information to 
improve the quality and effectiveness of the costly Medicare, Medicaid 
and SCHIP programs. In fiscal year 2005, $15 million was appropriated 
by Congress for this purpose, and the agency now has determined the top 
10 conditions for initial research. This type of study on ``what 
works'' in clinical therapies is crucial in an era of skyrocketing 
health care costs and limited federal dollars.
    Historically, however, AHRQ has been the lead agency to translate 
research into information for physicians and patients. Over the years, 
Congress has provided billions of dollars to the National Institutes of 
Health, which has resulted in important insights in preventing and 
curing major diseases. However, AHRQ's role has been to take this basic 
science and produce understandable, practical materials for the entire 
healthcare system. In short, AHRQ is the link between research and the 
patient care that Americans receive.
    In addition, AHRQ has long-supported research on conditions that 
affect most people. Most Americans get their medical care in doctors' 
offices and clinics. However, most medical research comes from the 
study of extremely ill patients in hospitals. AHRQ studies and supports 
research on the types of illness that trouble most people. In brief, 
AHRQ looks at the problems that bring people to their doctors every 
day--not the problems that send them to the hospital.

                         RURAL HEALTH PROGRAMS

    Continued funding for rural programs is vital to provide adequate 
health care services to America's rural citizens. We support the 
Federal Office of Rural Health Policy; Area Health Education Centers; 
the Community and Migrant Health Center Program; and the NHSC. State 
rural health offices, funded through the National Health Services Corps 
budget, help states implement these programs so that rural residents 
benefit as much as urban patients.

                               CONCLUSION

    The Academy urges Congress to increase funding for Section 747 
family medicine training, at a minimum, to the fiscal year 2003 level 
of $92 million; provide $440 million for AHRQ and support rural health 
programs. Federal funding for these initiatives is vital to sustain and 
improve America's health care system.
                                 ______
                                 
        Prepared Statement of the American Academy of Pediatrics

    This statement is submitted on behalf of the American Academy of 
Pediatrics (AAP) and the endorsing organizations, the Society for 
Adolescent Medicine (SAM) and the Ambulatory Pediatric Association 
(APA).
    There have been numerous and significant successes in improving the 
health of America's children and adolescents. The number of 2-year-olds 
who have received the recommended series of immunizations is at an all-
time high. Child death rates have fallen steadily over the past several 
years. And teen pregnancy rates continue to decline. However, despite 
these significant improvements, more than 9 million children and 
adolescents through age 18 remain uninsured. Moreover, racial and 
ethnic health disparities for many children and adolescents continue to 
exist, while the percent of children living in poverty continues to 
climb. Clearly there remains much work to do. As clinicians we must not 
only diagnose and treat our patients but also promote strong preventive 
interventions to improve the overall health and well-being of all 
infants, children, adolescents and young adults. Likewise, as policy-
makers, you have an integral role to play in improving the health of 
the next generation through adequate and sustained funding of vital 
federal programs.
    The AAP, SAM and APA has identified three key priorities within 
this Committee's jurisdiction key priorities that are at the heart of 
improving the health and well-being of America's children and 
adolescents: access to health care, quality of health care, and 
immunizations.

                                 ACCESS

    We believe that all children and adolescents should have full 
access to health care. From the ability to receive primary care from a 
pediatrician trained in the unique needs of children and adolescents, 
to timely access to pediatric medical subspecialists and pediatric 
surgical specialists, America's children and adolescents deserve access 
to quality pediatric care.
    Maternal and Child Health Block Grant.--The Maternal and Child 
Health (MCH) Block Grant Program at the Health Resources and Services 
Administration (HRSA) is the only federal program exclusively dedicated 
to improving the health of all mothers and children. Nationwide, the 
MCH Block Grant Program provides preventive and primary care services 
to over 28 million women, infants, children, adolescents and children 
with special health care needs. In addition, the MCH Block Grant 
Program supports community programs around the country in their efforts 
to reduce infant mortality, prevent injury and violence, expand access 
to oral health care, and address racial and ethnic health disparities. 
Moreover, the MCH Block Grant Program includes efforts dedicated to 
addressing interdisciplinary adolescent training and services and 
research for adolescents' physical and mental health care needs. HRSA 
also supports adolescent health programs for vulnerable populations, 
including health care initiatives for incarcerated and minority group 
adolescents, and violence and suicide prevention. It also plays an 
important role in the implementation of the State Children's Health 
Insurance Program (SCHIP), which is critically important at a time when 
states are continuing to suffer from ongoing deficits and shifting 
costs. One of the many successful MCH Block Grant programs is the 
Healthy Tomorrows Partnership for Children Program, a public/private 
collaboration between the MCH Bureau and the American Academy of 
Pediatrics. Established in 1989, Healthy Tomorrows has supported over 
140 family-centered, community-based initiatives in over 40 states, 
including Ohio, Wisconsin, Texas, California, Kentucky, and Maryland. 
These initiatives have addressed issues such as access to oral and 
mental health care, abstinence, injury prevention, and enhanced 
clinical services for chronic conditions such as asthma. To continue to 
foster these and other community-based solutions for local health 
problems, in fiscal year 2006 we strongly support an increase in 
funding for the MCH Block Grant Program to $755 million.
    Family Planning Services.--The family planning program, Title X of 
the Public Health Services Act, ensures that all teens have 
confidential access to valuable family planning resources. The 
consequence of adolescent pregnancy, sexually transmitted infections 
(STIs), and HIV/AIDS demands that adolescents be able to make informed, 
responsible sexual decisions. Title X--which does not provide funding 
for abortion services--supports teens in making those decisions. 
According to a January 2005 report from the Henry J. Kaiser Family 
Foundation, the percentage of high school students who report ever 
having had sexual intercourse has declined over the past decade, while 
the rate of contraceptive use among those teens has increased. 
Nevertheless, teen pregnancy rates continue to vary widely over racial 
and ethnic groups, over 4 million teens still contract a sexually 
transmitted infection each year, and nearly half (48 percent) of all 
teens say that they want more information from--and increased access 
to--sexual health care services. Responsible sexual decision-making, 
beginning with abstinence, is the surest way to protect against 
sexually transmitted diseases and pregnancy. However, for adolescent 
patients who are already sexually active, confidential contraceptive 
services, screening and prevention strategies should be available. We 
therefore support a funding level in fiscal year 2006 of $350 million 
for Title X of the Public Health Service Act.
    Mental Health.--It is estimated that one in five children and 
adolescents has a mental health problem such as depression, ADHD, or an 
eating disorder, and for as many as six million this problem may be 
significant enough to disturb school attendance, interrupt social 
interactions, and impact quality of family life. Despite these 
startling statistics, the National Institute of Mental Health (NIMH) 
estimates that fewer than one in five of these children receives 
treatment, due in part to stigma and the lack of affordability of care 
and availability of specialists. One key point of access for helping 
these children receive the mental health care they need is the 
inclusion of mental health services--provided by qualified counselors, 
psychologists, and social workers--in the nation's schools. Grants 
through the Children's Mental Health Services program have been 
instrumental in achieving decreased utilization of inpatient services, 
improvement in school attendance and lower law enforcement contact for 
children and adolescents. To ensure the continued and growing success 
of this and other programs focusing on children and adolescents with 
mental health problems, the AAP and the endorsing organizations 
recommend that $114.7 million be allocated in fiscal year 2006 for the 
Mental Health Services for Children program.
    Health Professions Education and Training.--Critical to building a 
pediatric workforce to care for tomorrow's children and adolescents are 
the Training Grants in Primary Care Medicine and Dentistry, found in 
Title VII of the Public Health Service Act. These grants are the only 
federal support targeted to the training of primary care professionals. 
They provide funding for innovative pediatric residency training, 
faculty development and post-doctoral programs throughout the country. 
For example, at the Cincinnati Children's Hospital, Title VII health 
professions programs have funded critically important programs in 
pediatric medical education. The Residency Training in Primary Care 
grant is designed to train physicians for a career in primary care 
pediatrics, and features a strong emphasis on behavioral and 
developmental pediatrics, pediatrics in a community setting, and care 
for under-represented minorities and medically underserved populations. 
The community settings in which the primary care training takes place--
and, often, ultimately where the physicians chose to practice--are 
federally-designated HPSAs with diverse populations. This program is 
now an integral part of the Cincinnati Children's pediatric residency 
training program, and widely sought after by physicians entering 
training at Children's.
    Through the enduring support of this subcommittee and Congress, the 
Title VII program has continued to finance critically important 
educational opportunities in a variety of settings that educate and 
train tomorrow's generalist pediatricians to be culturally competent 
and to meet the special health care needs of their communities. We 
recommend fiscal year 2006 funding of at least $40 million for General 
Internal Medicine/General Pediatrics. We also join with the Health 
Professions and Nursing Education Coalition in supporting an 
appropriation of at least $550 million in total funding for Titles VII 
and VIII. We further recommend and support the Administration's 
increase in funds in fiscal year 2006 for the National Health Service 
Corps, a key component to ensuring an adequate distribution of health 
care providers across the country, but emphasize the need for continued 
support of the training and education opportunities through Title VII 
for health care professionals who will work in these areas including 
community health centers.
    Independent Children's Teaching Hospitals.--Equally important to 
the future of pediatric education and research is the dilemma faced by 
independent children's teaching hospitals. Children's hospitals across 
the country are critical to the care of the nation's children and play 
a significant role in research and training tomorrow's pediatricians 
and pediatric subspecialists. This is especially important at a time 
when pediatric neurologists, gastroenterologists, and many other 
specialists for children are in short supply nationally. The children's 
hospitals have the critical mass of patients, physicians, and services 
needed to train these specialists, and their ability to sustain their 
teaching programs contributes to their ability to maintain these 
services. However, these hospitals qualify for very limited Medicare 
support, the primary source of funding for graduate medical education 
in other inpatient environments. As a bipartisan Congress has 
recognized in the past several years, equitable funding for Children's 
Hospitals Graduate Medical Education is needed to continue the 
education and research programs in these child- and adolescent-centered 
settings. We therefore reject the Administration's reduction in funding 
for this vital program and join with the National Association of 
Children's Hospitals to request total funding of $309 million for the 
CHGME program in fiscal year 2006 reflecting an adjustment for the cost 
of inflation. The support for independent children's hospitals should 
not come, however, at the expense of valuable Title VII and VIII 
programs, including grant support for primary care training.

                                QUALITY

    Access to health care is only the first step in protecting the 
health of all children and adolescents. We must ensure that the care 
provided is of the highest quality. Robust federal support for the wide 
array of quality improvement initiatives is needed if this goal is to 
be achieved.
    Emergency Services for Children.--One program that assists local 
communities in providing quality care to children is the Emergency 
Medical Services for Children (EMSC) grant program. There are 31 
million child and adolescent visits to the nation's emergency 
departments every year. Children under the age of 3 years account for 
most of these visits. Up to 20 percent of children needing emergency 
care have underlying medical conditions such as asthma, diabetes, 
sickle-cell disease, low birthweight, and bronchopulmonary dysplasia. 
Providers must be educated and trained to manage these special health 
care needs in emergency situations, and emergency systems must be 
equipped with the resources needed to care for this especially 
vulnerable population. In order to assist local communities in 
providing the best emergency care to children, we urge that the EMSC 
program be maintained and funded at $20 million in fiscal year 2006.
    Agency for Healthcare Research and Quality.--Quality of care rests 
on quality research--for new detection methods, new treatments, new 
technology and new applications of science. As the lead federal agency 
on quality of care research, the Agency for Healthcare Research and 
Quality (AHRQ) provides the scientific basis to improve the quality of 
care, supports emerging critical issues in health care delivery and 
addresses the particular needs of priority populations, such as 
children. Substantial gaps still remain in what we know about health 
care needs for children and adolescents and how we can best address 
those needs. Children are often excluded from research that could 
address these issues. The AAP and endorsing organizations strongly 
support AHRQ's objective to encourage researchers to include children 
and adolescents as part of their research populations. We also support 
increasing AHRQ's efforts to build pediatric health services research 
capacity through career and faculty development awards and strong 
practice-based research networks. Additionally, AHRQ is focusing on 
initiatives in community and rural hospitals to reduce medical errors 
and to improve patient safety through innovative use of information 
technology--an initiative that we hope would include children's 
hospitals as well. Through its research and quality agenda, AHRQ 
continues to provide policymakers, health care providers, and patients 
with critical information needed to improve health care; therefore, we 
join with the Friends of AHRQ to recommend funding of $440 million for 
AHRQ in fiscal year 2006.
    National Institutes of Health.--Since its inception, the National 
Institutes of Health (NIH) is an integral part of the public health 
continuum. NIH has served as a vital component in improving the 
nation's health through research, both on and off the NIH campus, and 
in the training of research investigators, including pediatric 
investigators. Over the years, NIH has made dramatic strides that 
directly impact the quality of life for infants, children and 
adolescents through biomedical and behavioral research. For example, 
NIH research has led to successfully decreasing infant death rates, 
increasing the survival rates from respiratory distress syndrome, and 
the transmission of HIV from infected mother to fetus and infant has 
dropped from 25 percent to just 1.5 percent. NIH is engaged in a 
comprehensive research initiative to address and explain the reasons 
for a major public health dilemma--the increasing number of obese and 
overweight adults and children in this country. Today U.S. teenagers 
are more overweight than young people in many other developed 
countries. There is also a need for ongoing and increased biomedical 
research and funding support to study pre-term delivery, etiology, 
prevention and treatment regimens. In 2002, more then 480,000 babies 
were born prematurely and the causes of nearly half pre-term births are 
unknown. The pediatric community applauds the prior commitment of 
Congress to maintain adequate funding for the NIH and we urge you to 
sustain this momentum of scientific discovery. We support the 
recommendation of the Ad Hoc Group for Medical Research Funding for a 
funding level in fiscal year 2006 of $30 billion. In addition, to 
ensure ongoing and adequate child and adolescent focused research, such 
as the National Children's Study conducted at the National Institute 
for Child Health and Human Development (NICHD), we join with the 
Friends of NICHD Coalition in requesting $1.35 billion in fiscal year 
2006.
    We commend this committee's ongoing efforts to make pediatric 
research a priority at the highest level of the NIH. We urge continued 
federal support of NIH efforts to increase pediatric biomedical and 
behavioral research, including such proven programs as targeted 
training and education opportunities and loan repayment. We recommend 
continued interest in and support for the Pediatric Research Initiative 
in the Office of the NIH Director and sufficient funding to continue 
the pediatric training grant and pediatric loan repayment programs 
enacted in the Children's Health Act of 2000. This would ensure that we 
have adequately trained pediatric researchers in multiple disciplines 
that will not come at the expense of other important programs.
    Finally, as clinicians, we know first-hand the considerable 
benefits for children and society in securing properly studied and 
dosed medications. The benefits of pediatric drug testing are 
undisputed. Proper pediatric safety and dosing information reduces 
medical errors and adverse events, ultimately improving children's 
health and reducing health care costs. In a very conservative estimate, 
the FDA projected savings from pediatric testing of over $228 million a 
year in reduced hospitalization expenses for just five diseases 
affecting children. But until now there has been little incentive for 
drug companies to study off-patent drugs--older drugs that are 
critically needed therapies for children. The Research Fund for the 
Study of Drugs, created as part of the Best Pharmaceuticals for 
Children Act of 2002, provides support for these critical pediatric 
testing needs, but unfortunately is currently funded at an amount 
sufficient to test only a fraction of the NIH and FDA-designated 
``priority'' drugs. Therefore, we urge you to provide the NIH with 
sufficient funding to fund the study of generic (off-patent) and 
selected on-patent drugs for pediatric use.
    We believe that these requests represent the best and most reliable 
estimates of the level of funding needed to sustain the high standard 
of scientific achievement embodied by the NIH. However, we encourage 
Congress to explore all possible options to identify additional sources 
of funding needed to support these increases if we are to reach these 
funding goals while not weakening any other valuable component of the 
Public Health Service.

                             IMMUNIZATIONS

    Immunization remains one of the greatest public health achievements 
of the 20th century and has saved millions of lives. Since the 
widespread use of vaccines, millions of children have avoided terrible 
diseases that can cause great suffering and, in some cases, death. For 
example before immunization, polio paralyzed 10,000-25,000 children and 
adults, rubella (German measles) caused birth defects and mental 
retardation in as many as 20,000 newborns, and measles infected 
millions of children, killing 400-500 and leaving thousands with 
serious brain damage. Immunizations have reduced by more than 95 to 99 
percent the cases of vaccine-preventable infectious diseases in this 
country. And some, like rubella, are virtually eliminated from North 
America, thanks to successful immunization programs.
    Pediatricians, working alongside public health professionals and 
other partners, have brought the United States its highest immunization 
coverage levels in history. As a result, disease levels are at, or 
near, record low levels. We attribute this, in part, to the Vaccines 
for Children (VFC) Program and encourage Congress to maintain its 
commitment to ensuring the program's viability. The VFC program 
combines the efforts of public health and private pediatricians and 
other health care professionals to accomplish and sustain vaccine 
coverage goals for both today's and tomorrow's vaccines. It removes 
vaccine cost as a barrier to immunization for some and reinforces the 
concept of vaccine delivery in a ``medical home.'' However, we are 
concerned that once again the Administration's fiscal year 2006 
proposal to reduce funding for the Section 317 program to expand VFC is 
shortsighted. Additional section 317 funding is necessary to provide 
the pneumococcal conjugate vaccine (PCV-7), a vaccine that prevents an 
infection of the brain covering, blood infections and approximately 7 
million ear infections a year, to those remaining states that currently 
do not provide it. Increased funding also is needed to purchase the 
influenza vaccine. It is now recommended that young children between 
the ages of 6 months and 23 months of age receive an annual influenza 
vaccine. This age cohort is increasingly susceptible to serious 
infection and the risk of hospitalization. And an increase in funding 
is needed to purchase the recently recommended meningococcal conjugate 
vaccine (MCV). Meningococcal disease is a serious illness, caused by 
bacteria, with 10-15 percent of cases fatal and another 10-15 percent 
of cases resulting in permanent hearing loss, mental retardation, or 
loss of limbs.
    The public health infrastructure that now supports our national 
immunization efforts must not be jeopardized with insufficient funding. 
One of the conclusions of the 2000 Institute of Medicine report, 
Calling the Shots, was that unstable funding for state immunization 
programs threatens coverage levels for specific populations and age 
groups and vaccine safety. This continues to be true today. A strong 
and sufficient infrastructure is essential. For example, adolescents 
continue to be adversely affected by vaccine-preventable diseases 
(e.g., chicken pox, hepatitis B, measles and rubella). Comprehensive 
adolescent immunization activities at the national, state and local 
levels are needed to achieve national disease elimination goals. States 
and communities continue to be financially strapped and therefore, many 
continue to divert funds and health professionals from immunization 
clinics in order to accommodate anti-bioterrorism initiatives. 
Moreover, continued investment in the CDC's immunization activities 
must be made to avoid the reoccurrence of childhood vaccine shortages 
by providing and adequately funding a national 6 month stockpile for 
all routine childhood vaccines--stockpiles of sufficient size to insure 
that significant and unexpected interruptions in manufacturing do not 
result in shortages for children.
    While the ultimate goal of immunizations clearly is eradication of 
disease, the immediate goal must be prevention of disease in 
individuals or groups. To this end, we strongly believe that CDC's 
efforts must be sustained. In fiscal year 2006, we recommend an overall 
increase in funding of $232 million to ensure that the CDC's National 
Immunization Program has the funding necessary to accommodate vaccine 
price increases, new disease preventable vaccines coming on the market, 
global immunization initiatives--including funds for polio eradication 
and the elimination of measles and rubella--and to continue to 
implement the recommendations developed by the IOM.

                               CONCLUSION

    We appreciate the opportunity to provide our recommendations for 
the coming fiscal year. As this Subcommittee is once again faced with 
difficult choices and multiple priorities we know that as in the past 
years, you will not forget America's children and adolescents.

               OTHER RECOMMENDATIONS FOR FISCAL YEAR 2006

                 DEPARTMENT OF HEALTH AND HUMAN SERVICES
------------------------------------------------------------------------
                        Agency                               Amount
------------------------------------------------------------------------
Centers for Disease Control and Prevention (total)...     $8,065,000,000
    Global Immunization (including polio eradication)        153,000,000
    Birth Defects, Disability and Health.............        135,000,000
    Newborn Hearing Screening Technical Assistance...          9,000,000
    National Violent Death Reporting System..........         10,000,000
    Folic Acid Education Campaign....................          4,000,000
Health Resources and Services Administration (total).      7,500,000,000
    Newborn Screening (Title XXVI)...................         25,000,000
    Newborn Hearing Screening Grants to States.......         10,000,000
    Consolidated Community Health Centers............      2,038,000,000
Substance Abuse and Mental Health Services                 3,531,000,000
 Administration (total)..............................
------------------------------------------------------------------------

                                 ______
                                 
   Prepared Statement of the American Academy of Physician Assistants

    On behalf of the more than 55,000 clinically practicing physician 
assistants in the United States, the American Academy of Physician 
Assistants is pleased to submit comments on fiscal year 2006 
appropriations for Physician Assistant (PA) education programs that are 
authorized through Title VII of the Public Health Service Act.
    A member of the Health Professions and Nursing Education Coalition 
(HPNEC), the Academy supports the HPNEC recommendation to provide at 
least $550 million to support the Titles VII and VIII programs in 
fiscal year 2006, including $18 million to support PA educational 
programs, as recommended by the Advisory Committee on Primary Care 
Medicine and Dentistry.
    The Academy believes that the recommended increase in funding for 
the Title VII health professions programs is well justified. The 
programs are essential to the development and training of primary 
health care professionals and contribute to the nation's overall 
efforts to increase access to care by promoting health care delivery in 
medically underserved communities.
    The Academy is very concerned with the Administration's proposal to 
eliminate funding for most Title VII programs, including zero funding 
for training in primary care medicine and dentistry. As Members of the 
Subcommittee are aware, these programs are designed to help meet the 
health care delivery needs of the nation's Health Professional Shortage 
Areas (HPSAs). By definition, the nation's more than 3,800 HPSAs 
experience shortages in the primary care workforce that the market 
alone can't address. We wish to thank the members of this subcommittee 
for your historical role in supporting funding for the health 
professions programs, and we hope that we can count on your support for 
these important programs in fiscal year 2006.

               OVERVIEW OF PHYSICIAN ASSISTANT EDUCATION

    Physician assistant programs provide students with a primary care 
education that prepares them to practice medicine with physician 
supervision. PA programs are located at schools of medicine or health 
sciences, universities, teaching hospitals, and the Armed Services. All 
PA educational programs are intensive education programs that are 
accredited by the Accreditation Review Commission on Education for the 
Physician Assistant.
    The typical PA program consists of 111 weeks of instruction. The 
first phase of the program consists of intensive classroom and 
laboratory study, providing students with an in-depth understanding of 
the medical sciences. More than 400 hours in classroom and laboratory 
instruction are devoted to the basic sciences, with over 70 hours in 
pharmacology, more than 149 hours in behavioral sciences, and more than 
535 hours of clinical medicine.
    The second year of PA education consists of clinical rotations. On 
average, students devote more than 2,000 hours or 50-55 weeks to 
clinical education, divided between primary care medicine and various 
specialties, including family medicine, internal medicine, pediatrics, 
obstetrics and gynecology, surgery and surgical specialties, internal 
medicine subspecialties, emergency medicine, and psychiatry. During 
clinical rotations, PA students work directly under the supervision of 
physician preceptors, participating in the full range of patient care 
activities, including patient assessment and diagnosis, development of 
treatment plans, patient education, and counseling.
    Physician assistant education is competency based. After graduation 
from an accredited PA program, the physician assistant must pass a 
national certifying examination jointly developed by the National Board 
of Medical Examiners and the independent National Commission on 
Certification of Physician Assistants. To maintain certification, PAs 
must log 100 continuing medical education credits over a two-year cycle 
and reregister every two years. Also to maintain certification, PAs 
must take a recertification exam every six years.

                      PHYSICIAN ASSISTANT PRACTICE

    Physician assistants are licensed health care professionals 
educated to practice medicine as delegated by and with the supervision 
of a physician. In all states, physicians may delegate to PAs those 
medical duties that are within the physician's scope of practice and 
the PA's training and experience, and are allowed by law. Forty-eight 
states, the District of Columbia, and Guam authorize physicians to 
delegate prescriptive privileges to the PAs they supervise.
    PAs are located in almost all health care settings and in every 
medical and surgical specialty. Nineteen percent of all PAs practice in 
non-metropolitan areas where they may be the only full-time providers 
of care (state laws stipulate the conditions for remote supervision by 
a physician). Approximately 41 percent of PAs work in urban and inner 
city areas. Approximately 44 percent of PAs are in primary care. Nearly 
one-quarter practice in surgical specialties. Roughly 80 percent of PAs 
practice in outpatient settings. In 2004, an estimated 206 million 
patient visits were made to PAs and approximately 250 million 
medications were prescribed or recommended by PAs.

  CRITICAL ROLE OF THE TITLE VII, PUBLIC HEALTH SERVICE ACT, PROGRAMS

    A growing number of Americans lack access to primary care, either 
because they are uninsured, underinsured, or they live in a community 
with an inadequate supply or distribution of providers. The growth in 
the uninsured U.S. population increased from approximately 32 million 
in the early 1990s to nearly 45 million today. Simultaneously, the 
number of medically underserved communities continues to rise, from 
1,949 in 1986 to more than 3,800 today.
    The role of the Title VII programs is to alleviate these problems 
by supporting access to quality, affordable, and cost-effective care in 
areas of our country that are most in need of health care services, 
specifically rural and urban underserved communities. This is 
accomplished through the support of educational programs that train 
more health professionals in fields experiencing shortages, improve the 
geographic distribution of health professionals, and increase access to 
care in underserved communities.
    The Title VII programs are the only federal education programs that 
are designed to address the supply and distribution imbalances in the 
health professions. Since the establishment of Medicare, the costs of 
physician residencies, nurses, and some allied health professions 
training has been paid through Graduate Medical Education (GME) 
funding. However, GME has never been available to support PA education. 
More importantly, GME was not intended to generate a supply of 
providers who are willing to work in the nation's medically underserved 
communities. That is the purpose of the Title VII Public Health Service 
Act Programs, which support such initiatives as loans and scholarships 
for disadvantaged students, scholarships for students with exceptional 
financial need, centers of excellence to recruit and train minority and 
disadvantaged students, and interdisciplinary initiatives in geriatric 
care and rural health care.
    Furthermore, now that there is compelling evidence that race and 
ethnicity correlate with persistent, and often increasing, health 
disparities among U.S. populations, increasing the diversity of health 
care professionals is essential. Title VII programs are unique in that 
they seek to recruit providers from a variety of backgrounds. This is 
particularly important, as studies have found that those from 
disadvantaged regions of the country are three to five times more 
likely to return to those underserved areas to provide care versus 
other areas.

               TITLE VII SUPPORT OF PA EDUCATION PROGRAMS

    Targeted federal support for PA education programs is currently 
authorized through section 747 of the Public Health Service Act. The 
program was reauthorized in the 105th Congress through the Health 
Professions Education Partnerships Act of 1998, Public Law 105-392, 
which streamlined and consolidated the federal health professions 
education programs. Support for PA education is now considered within 
the broader context of training in primary care medicine and dentistry.
    Public Law 105-392 reauthorized awards and grants to schools of 
medicine and osteopathic medicine, as well as colleges and 
universities, to plan, develop, and operate accredited programs for the 
education of physician assistants and faculty, with priority given to 
training individuals from disadvantaged communities. The funds ensure 
that PA students from all backgrounds have continued access to an 
affordable education and encourage PAs, upon graduation, to practice in 
underserved communities. These goals are accomplished by funding PA 
education programs that have a demonstrated track record of: (1) 
placing PA students in health professional shortage areas; (2) exposing 
PA students to medically underserved communities during the clinical 
rotation portion of their training; and (3) recruiting and retaining 
students who are indigenous to communities with unmet health care 
needs.
    The program works. A review of PA graduates from 1990-2003 reveals 
that students graduating from PA programs supported by Title VII are 65 
percent more likely to be from underrepresented minority backgrounds 
and 29 percent more likely to practice in underserved settings, than 
students graduating from PA programs that were not supported by Title 
VII.
    The PA programs' success in recruiting and retaining 
underrepresented minority and disadvantaged students is linked to their 
ability to creatively use Title VII funds to enhance existing 
educational programs. For example, a PA educational program in Iowa 
uses Title VII funds to target recruitment efforts to disadvantaged 
students, providing shadowing and mentoring opportunities for 
prospective students, increasing training in cultural competency, and 
identifying new family medicine preceptors in underserved areas. PA 
programs in Texas use Title VII funds to create new clinical rotation 
sites in rural and underserved areas, including new sites in border 
communities, and to establish non-clinical rural rotations to help 
students understand the challenges faced by rural communities. One 
Texas program uses Title VII funds for the development of web based and 
distant learning technology and methodologies so students can remain at 
clinical practice sites. A PA program in New York, where over 90 
percent of the students are ethnic minorities, uses Title VII funding 
to focus on primary care training for underserved urban populations by 
linking with community health centers, which expands the pool of 
qualified minority role models that engage in clinical teaching, 
mentoring, and preceptorship for PA students. Several other PA programs 
have been able to use Title VII grants to leverage additional resources 
to assist students with the added costs of housing and travel that 
occur during relocation to rural areas for clinical training.
    Without Title VII funding, many of these special PA training 
initiatives would not be possible. Institutional budgets and student 
tuition fees simply do not provide sufficient funding to meet the 
special, unmet needs of medically underserved areas or disadvantaged 
students. The need is very real, and Title VII is critical in meeting 
it.

     NEED FOR INCREASED TITLE VII SUPPORT FOR PA EDUCATION PROGRAMS

    Increased Title VII support for educating PAs to practice in 
underserved communities is particularly important given the market 
demand for physician assistants. Without the Title VII funding to 
expose students to underserved sites during their training, PA students 
are far more likely to practice in the communities where they were 
raised or the communities in which they attended school. Title VII 
funding is a critical link in addressing the natural geographic 
maldistribution of health care providers by exposing students to 
underserved sites during their training, where they frequently choose 
to practice following graduation. Currently 36 percent of PAs met their 
first clinical employer through their clinical rotations.
    Changes in the health care marketplace reflect a growing reliance 
on PAs as part of the health care team. Currently, the supply of 
physician assistants is inadequate to meet the needs of society, and 
the demand for PAs is expected to increase. A 1994 report of a 
workgroup of the Council on Graduate Medical Education (COGME), 
``Physician Assistants in the Health Workforce,'' estimated that the 
anticipated medical market demand and the estimated workforce 
requirements for PAs would exceed supply. Additionally, the Bureau of 
Labor Statistics projects that the number of available PA jobs will 
increase 49 percent between 2002 and 2012. Title VII funding has 
provided, and continues to provide, a crucial pipeline of trained PAs 
to underserved areas. One way to assure an adequate supply of physician 
assistants, especially PAs likely to practice in underserved areas, is 
to continue offering financial incentives, such as funding preferences, 
to PA programs that emphasize recruitment and placement of people 
interested in primary health care in medically underserved communities.
    Despite the increased demand for PAs, funding has not 
proportionately increased for the Title VII programs that are designed 
to educate and place physician assistants in underserved communities. 
Nor has the Title VII support for PA education kept pace with increases 
in the cost of educating PAs. A review of PA program budgets from 1984 
through 2003 indicates an average annual increase of seven percent, a 
total increase of 245 percent over the past 19 years, yet federal 
support has remained relatively static.

              RECOMMENDATIONS ON FISCAL YEAR 2006 FUNDING

    The American Academy of Physician Assistants urges members of the 
Appropriations Committee to consider the inter-dependency of all the 
public health agencies and programs when determining funding for fiscal 
year 2006. For instance, while it is important to fund clinical 
research at the National Institutes of Health (NIH) and to have an 
infrastructure at the Centers for Disease Control (CDC) that ensures a 
prompt response to an infectious disease outbreak or bioterrorist 
attack, the good work of both of these agencies will go unrealized if 
the Health Resources and Services Administration (HRSA) is inadequately 
funded. HRSA administers the ``people'' programs, such as Title VII, 
that bring the cutting edge research discovered at NIH to the 
patients--through providers such as PAs who have been educated in Title 
VII-funded programs. Likewise, CDC is heavily dependent upon an 
adequate supply of health care providers to be sure that disease 
outbreaks are reported, tracked, and contained.
    The critically important programs administered by NIH, HRSA, and 
CDC are integral components within the nation's public health 
continuum. One component is not more important than another, and no one 
component can succeed without adequate support from each of the other 
elements.
    Furthermore, while the Academy applauds the Administration's 
proposal to strengthen national security by increasing support for 
health emergency preparedness initiatives, it should not do so at the 
expense of Title VII programs. Training is the key to preparedness, and 
Title VII, section 747, is an ideal mechanism for educating primary 
care providers in public health competencies, facilitating population 
based and community-based skills and training, and increasing the 
alliance between public health and primary care providers. This is 
particularly important for our Nation's most disadvantaged and 
underserved populations, because they are the most vulnerable during 
medical emergencies because of a lack of resources and access to care.
    The Academy respectfully requests that the Title VII and VIII 
health professions programs receive $550 million in funding for fiscal 
year 2006, including $18 million to support PA educational programs, as 
recommended by the Advisory Committee on Primary Care Medicine and 
Dentistry.
    Thank you for the opportunity to present the American Academy of 
Physician Assistants' views on fiscal year 2006 appropriations.
                                 ______
                                 
 Prepared Statement of the American Association of Nurse Anesthetists 
                                 (AANA)

                                 FISCAL YEAR 2006 APPROPRIATIONS REQUEST SUMMARY
----------------------------------------------------------------------------------------------------------------
                                            Fiscal year 2005 actual     Fiscal year 2006 budget    AANA request
----------------------------------------------------------------------------------------------------------------
HHS /HRSA /BHPr Title VIII Advanced       Awaiting grant allocations  Grant allocations not           $3,000,000
 Education Nursing, Nurse Anesthetist      $3.5 MM fiscal year 2004.   specified.
 Education Reserve.
Title VIII HRSA BHPr Nursing Education    $150,674,000..............  $150,471,000..............     210,000,000
 Programs.
----------------------------------------------------------------------------------------------------------------

    Chairman Specter, Ranking Member Harkin, and members of the 
Subcommittee: The AANA is the professional association for more than 
30,000 Certified Registered Nurse Anesthetists (CRNAs) and student 
nurse anesthetists representing over 90 percent of the nurse 
anesthetists in the United States. Today, CRNAs are directly involved 
in approximately 65 percent of all anesthetics given to patients each 
year in the United States. CRNA services include administering the 
anesthetic, monitoring the patient's vital signs, staying with the 
patient throughout the surgery, as well as providing acute and chronic 
pain management services. CRNAs provide anesthesia for a wide variety 
of surgical cases and are the sole anesthesia providers in almost 70 
percent of rural hospitals, affording these medical facilities 
obstetrical, surgical, and trauma stabilization, and pain management 
capabilities. CRNAs work in every setting in which anesthesia is 
delivered including hospital surgical suites and obstetrical delivery 
rooms, ambulatory surgical centers (ASCs), pain management units and 
the offices of dentists, podiatrists and plastic surgeons.
    Having provided anesthesia since the Civil War, masters' educated 
nurse anesthetists today have set for ourselves the most rigorous 
continuing education and recertification requirements in the field. We 
are humbled and honored that the Institute of Medicine reported in 1999 
that anesthesia is 50 times safer than 20 years ago. And a recent study 
by Dr. Michael Pine of over 400,000 cases in 22 states involving CRNAs, 
anesthesiologists, or both together finds ``the type of anesthesia 
provider does not affect inpatient surgical mortality.'' In addition, a 
recent AANA workforce study's data showed that CRNAs and 
anesthesiologists are substitutes in the production of surgeries. 
Through continual improvements in research, education, continuing 
education and practice, nurse anesthetists are vigilant to continue 
improving patient safety.
    And CRNAs provide the lion's share of the anesthesia care required 
by our U.S. Armed Forces through active duty and the reserves, from 
here at home to the leading edge of the field of battle. In May 2003, 
at the beginning of ``Operation Iraqi Freedom'' 364 CRNAs had been 
deployed to the Middle East to ensure military medical readiness 
capabilities. For decades CRNAs have staffed ships, remote U.S. 
military bases, and forward surgical teams without physician 
anesthesiologist support.

      IMPORTANCE OF TITLE VIII NURSE ANESTHESIA EDUCATION FUNDING

    Our chief request before the Subcommittee today, for at least $3 
million to be reserved for nurse anesthesia education from Title VIII, 
is based on two facts. First, there is a 12 percent vacancy rate of 
nurse anesthetists in the United States impacting people's healthcare. 
And second, the Title VIII program supported strongly by members of 
this Subcommittee in the past is an effective means to help address the 
nurse anesthesia workforce demand. This demand for CRNAs is something 
we as a profession are addressing every day with success, and with the 
critical assistance of federal funding through HHS' Title VIII 
appropriation.
    In 2003 the AANA conducted a nurse anesthesia workforce study, 
which concluded a 12 percent vacancy rate in hospitals for CRNAs, and a 
lower vacancy rate in ambulatory surgical centers for 2002. The supply 
has increased in recent years, stimulated by increases in the number of 
CRNAs trained. However, these increases had not been enough to offset 
the number of retiring CRNAs. This trend, as of 2003, will require 
raising the number of nurse anesthesia graduates to fill the growing 
vacancy rate. This is compounded by rising number of Medicare-eligible 
Americans, from about 34 million today, to more than 40 million in 
2010, who will require the care that CRNAs provide.
    The problem is not that our 94 accredited schools of nurse 
anesthesia are failing to attract qualified applicants. These CRNA 
schools are located all across the country including ten in 
Pennsylvania, five each in Ohio and Florida and Texas, four each in 
Illinois and New York, three each in California and Connecticut and 
Maryland, two in Rhode Island, and one in Wisconsin. It is that they 
are full. Each CRNA school continues to turn away qualified 
applicants--bachelor's educated nurses who had spent at least one year 
serving in a critical care environment. Recognizing the importance of 
nurse anesthetists to quality healthcare, the AANA has been working 
with its 94 accredited schools of nurse anesthesia to increase the 
number of qualified graduates, and to expand the number of CRNA 
schools. The Council on Accreditation of Nurse Anesthesia Educational 
Programs (COA) reports that in 1999, our schools produced 948 new 
graduates. By 2005, that number had increased to 1,628, a 72 percent 
increase in just five years. The growth is expected to continue. The 
COA projects CRNA schools to produce 1,800 graduates in 2005. But to 
meet the challenge, we simply must continue expanding the capacity and 
number of CRNA schools. With the help of competitively awarded Title 
VIII funding, we are making significant progress, expanding both the 
number of clinical practice sites and the number of graduates.
    We are pleased to report that this progress is extremely cost-
effective from the standpoint of federal funding. Anesthesia can be 
provided by nurse anesthetists, physician anesthesiologists, or by 
CRNAs and anesthesiologists working together. And we know what the Pine 
study confirms, ``the type of anesthesia provider does not affect 
inpatient surgical mortality.'' Yet, for what it costs to train just 
one anesthesiologist, eleven CRNAs may be educated for the same task at 
the same superlative level of safety. This represents an eleven to one 
educational cost/benefit for supporting CRNA educational programs with 
federal dollars vs. supporting other anesthesia providers' education. 
This also contributes to a three or four to one anesthesia delivery 
cost/benefit. These ratios represent a cost/benefit unprecedented in 
any other healthcare specialty.
    So is this $3 million Title VIII investment in nurse anesthesia 
education effective? In February 2003, AANA surveyed its CRNA school 
program directors, to gauge the impact of the Title VIII funding. Of 
those that had reported receiving competitive Title VIII Nurse 
Education and Practice Grants funding, and there were eleven such 
schools from 1998 to 2003, they said they on average had increased 
their number of graduating CRNAs by more than 15 each per year. They 
reported on average more than doubling their number of CRNA graduates 
per school, who provide care to patients during and following their 
education. Moreover, they reported producing additional CRNAs that went 
to serve in rural or medically underserved areas. Under both of these 
circumstances, an increased number of student nurse anesthetists and 
CRNAs are providing healthcare to the people of medically underserved 
America.
    We believe it is important for the Subcommittee to allocate $3 
million for nurse anesthesia education for several reasons. First, as 
we have shown, the funding is cost-effective and well-needed. Second, 
the Title VIII authorization previously providing such a reserve 
expired in September 2002. The amount we request is consistent with 
what Title VIII provided in fiscal year 2001. Third, this particular 
funding is important because nurse anesthesia for rural and medically 
underserved America is not affected by increases in the budget for the 
National Health Service Corps and community health centers, since those 
initiatives are for delivering primary and not surgical healthcare. 
And, last, this funding meets an overall objective to increase access 
to quality healthcare in medically underserved America.

       TITLE VIII FUNDING FOR STRENGTHENING THE NURSING WORKFORCE

    Mr. Chairman, the AANA joins a growing coalition of nursing 
organizations and others in support of the Subcommittee providing a 
total of $210 million in fiscal year 2006 for nursing shortage relief 
through Title VIII. This amount is approximately $60 million over the 
fiscal year 2005 level, and over the President's fiscal year 2006 
budget. Every district in America is familiar with the importance of 
nursing.
    I understand that this request is a significant increase over the 
President's request. Thanks to your leadership and that of the 
Subcommittee, Congress increased nurse education funding $5 million 
over the President's request in fiscal year 2005 for which we are 
grateful, though we are concerned the Division of Nursing ``expert 
panel'' report that motivated requests to reduce Advanced Education 
Nursing is itself fraught with shortfalls, pitfalls and problems.
    Another perspective is that America spends more than $1.7 trillion 
on healthcare this year, paid by private and public sources. About $298 
billion of that is estimated to be Medicare outlays in 2005. About $8.7 
billion of that Medicare funds direct and indirect GME, with some 99 
percent of that funding helping to educate physicians and allied health 
professionals, and about 1 percent to help educate nurses. $301 million 
of the fiscal year 2005 appropriations bill supports a GME-type program 
for pediatricians through children's hospitals. These are all worthy 
things. But for every present and future healthcare patient, Congress 
must put some focus on nurses and nurse anesthesia care.
    From each dollar America spends in healthcare our request is that 
the federal government should allocate at least 15 thousandths of a 
cent to ensure we have enough nurses, and at least two ten-thousandths 
of a cent to ensure we have the safe anesthesia care we need when we 
need it. This action will improve patients' healthcare, and strengthen 
seniors' Medicare, all at once.
    Thank you.
                                 ______
                                 
    Prepared Statement of the American College of Obstetricians and 
                             Gynecologists

    The American College of Obstetricians and Gynecologists (ACOG), on 
behalf of its 46,000 partners in women's health care, is pleased to 
offer this statement to the Senate Committee on Appropriations, 
Subcommittee on Labor, Health and Human Services, and Education. We 
thank Chairman Specter, Ranking Member Harkin, and the entire 
subcommittee for their leadership to continually address maternal and 
child health care services.
    The Nation has made important strides to improve women and 
children's health over the past several years, and ACOG is grateful to 
this Committee for its commitment to research. We look forward to 
working with the Members of this Committee to ensure that vital 
research continues to eliminate disease and to ensure valuable new 
treatment discoveries are implemented. The NIH has examined and 
determined many disease pathways, while the Health Resources and 
Services Administration has been successful in translating research 
findings into valuable public health policy solutions. This dedicated 
commitment to elevate, promote and implement medical research faces an 
uncertain future at a time when scientists are on the cusp of new 
cures.
    It is vital that the Committee provide strong support for current 
studies, and for future advances, as well. We urge the Committee to 
support a 6 percent increase for the National Institutes of Health 
(NIH) in fiscal year 2006, and a 6 percent increase for the National 
Institute of Child Health and Human Development (NICHD). We also 
continue to support efforts to secure adequate funds for important 
public health programs such as the Health Resources and Services 
Administration (HRSA). Continued appropriations to these agencies will 
ensure ongoing and new research initiatives continue to yield positive 
results for women and children's health.

        NATIONAL INSTITUTES OF HEALTH--RESEARCH LEADING THE WAY

Ob-Gyn Representation on the NICHD Advisory Council
    ACOG is most concerned that research conducted through the National 
Institute on Child Health and Human Development (NICHD) receives 
adequate funding, that the Institute can attract new ob-gyn 
researchers, and that individuals who have expertise and knowledge 
about its work guide NICHD.
    NICHD has overseen tremendous advancements for women including 
improving pregnancy and childbirth outcomes, and identifying cures for 
diseases and conditions affecting women of all ages and at all stages 
in life. NICHD is, in fact, the Institute where the vast majority of 
ob-gyn related research takes place and the only Institute where ob-
gyns have a prominent role. It's critical, then, to require that the 
NICHD Advisory Council include an adequate number of individuals who 
have distinguished themselves in ob-gyn clinical practice and research.
    Currently, this important Council, which guides the Institute's 
research funding decisions, is composed of 17 appointed members, 
including pediatricians, ob-gyns, sociologists, biologists, media 
consultants, and nurses. The ob-gyns on the Council bring years of 
expertise and knowledge of women's health care needs, research 
priorities, and the impact of research discoveries on women's lives. In 
November 2004, the number of ob-gyns on the Council was reduced from 3 
to 2.
    ACOG worked actively with the NICHD to advocate the appointment of 
another ob-gyn to this position, and we are deeply troubled that NICHD 
filled this position with an attorney, rather than with another ob-gyn. 
Research conducted at NICHD helps shape the future of women's health 
care. Women across America and the world suffer from issues of maternal 
morbidity, uterine fibroids, vulvodynia and numerous other health care 
issues that are far from being understood and cured. The world faces 
global challenges, too, of the spread of sexually transmitted diseases, 
which have barely been acknowledged, much less challenged and defeated.
    The NICHD Advisory Council must include an adequate number of ob-
gyns who are experts in these clinical and research areas. We object 
strongly to any attempt to reduce the ability of our specialty to 
contribute to the research direction of this Institute which is 
obviously so critical to the area that we know better than any other 
group or medical specialty--women's health.
    We look to Congress to amend the NICHD statute to require that its 
Advisory Council include no fewer than three experts in the field of 
ob-gyn. This action is necessary to ensure that decisions that will 
affect the future of women's health care are made by individuals with 
expertise and a deep level of commitment to the field. We hope to work 
actively with this Committee and the Congress to restructure the 
Council representation requirements.

Research at the NICHD
    The NICHD conducts research that holds great promise to improve 
maternal and fetal health and safety. With the support of Congress, the 
Institute has initiated research addressing the causes of cerebral 
palsy, gestational diabetes and pre-term birth. However, much more 
needs to be done to reduce the rates of maternal mortality and 
morbidity in the United States. More research is needed on such 
pregnancy-related issues as the impact of chronic conditions during 
pregnancy, racial and ethnic disparities in maternal mortality and 
morbidity, and drug safety with respect to pregnancy.
    A commitment to research in maternal health sheds light on a 
breadth of issues that save women's lives. Important research examining 
the following issues must continue:
            Reducing High Risk Pregnancies
    NICHD's Maternal Fetal Medicine Unit Network, working at 14 sites 
across the United States (University of Alabama, University of Texas-
Houston, University of Texas-Southwestern, Wake Forest University, 
University of North Carolina, Brown University-Women and Infant's 
Hospital, Columbia University, Drexel University, University of 
Pittsburgh-Magee Women's Hospital, University of Utah, Northwestern 
University, Wayne State University, Case Western University, and Ohio 
State University), will help reduce the risks of cerebral palsy, 
caesarean deliveries, and gestational diabetes. This Network discovered 
that progesterone reduces preterm birth by one-third.
            Reducing the Risk of Perinatal HIV Transmission
    In the last 10 years, NICHD research has helped decrease the rate 
of perinatal HIV transmission from 27 percent to 1.2 percent. This 
advancement signals the near end to mother-to-child transmission of 
this deadly disease.
            Reducing the Effects of Pelvic Floor Disorders
    The Institute has made recent advancements in the area of pelvic 
floor disorders. The NICHD is investigating whether women that have 
undergone cesarean sections have fewer incidences of pelvic floor 
disorder than women who have delivered vaginally.
            Reducing the Prevalence of Premature Births
    NICHD is helping our Nation understand how adverse conditions and 
health disparities increase the risks of premature birth in high-risk 
racial groups.
            Drug Safety During Pregnancy
    The NICHD recently created the Obstetric and Pediatric Pharmacology 
Branch to measure drug metabolism during pregnancy.
The Challenge of the Future: Attracting New Researchers
    Despite the NICHD's critical advancements, reduced funding has made 
it difficult for this research to continue, largely due to the lack of 
new investigators. Congressional programs such as the loan repayment 
program, the NIH Mentored Research Scientist Development Program for 
reproductive health, and a small grant program, all attract new 
researchers, but low pay lines make it difficult for the NICHD to 
maintain these researchers. Due to the structure of the peer review 
system, previous grant recipients have an advantage because their 
grants require fewer funds. This makes it more difficult for new 
investigators to get into the system, jeopardizing the future of 
women's health research. We urge the Committee to significantly 
increase funding at the NICHD to maintain a high level of research 
innovation and excellence, in turn reducing the incidence of maternal 
morbidity and mortality and discovering cures for other chronic 
conditions.

  HEALTH RESOURCES AND SERVICES ADMINISTRATION: TURNING RESEARCH INTO 
                               SOLUTIONS

    It is critical that we rapidly transform women's health research 
findings into public health solutions. The Health Resources and 
Services Administration (HRSA) has created women and children's health 
outreach programs based on research conducted on prematurity, high risk 
pregnancies, gestational diabetes, and a variety of other health 
issues. The National Fetal Infant Mortality Review and the Provider's 
Partnership are two examples of the successful programs under the 
Healthy Start Initiative.
    For example, research shows tobacco abuse and health disparities 
are risk factors for infant mortality. Healthy Start offers programs 
for states, which fund provider and community education programs that 
improve maternal health through tobacco cessation programs, and finds 
ways to decrease the infant mortality rate by investigating cultural 
and institutional health disparities.

                 NATIONAL FETAL INFANT MORTALITY REVIEW

    The Fetal and Infant Mortality Review (FIMR) is a cooperative 
federal agreement between ACOG and the Maternal Child Health Bureau at 
HRSA. FIMR uses the expertise of ob-gyns and local health departments 
to find solutions to problems related to infant mortality. In light of 
the recent increase in the infant mortality rate for 2002, the FIMR 
program is vital to develop community-specific, culturally appropriate 
interventions. Today 220+ local programs in 42 states are implementing 
FIMR and finding it is a powerful tool to bring communities together to 
address the underlying problems that negatively affect the infant 
mortality rate.
    In order to meet the demand of the increasing number of FIMR 
programs, NFIMR must be able to continue its activities at an adequate 
funding level. A rigorous national evaluation of FIMR conducted by 
Johns Hopkins University has concluded that the FIMR methodology is an 
effective perinatal initiative. Based on that new research, FIMR can 
now be called an evidence based MCH intervention. All Healthy Start 
programs and every locality with disparities in infant outcomes should 
be actively encouraged to implement this FIMR process.
    We urge this Committee to recognize the many positive contributions 
of the FIMR program and ensure it remains a fully funded program within 
HRSA.

                         PROVIDER'S PARTNERSHIP

    Through May 2003, HRSA funded the Provider's Partnership, a 
cooperative agreement between the Federal Maternal and Child Health 
Bureau and ACOG. This Partnership includes a series of state-level 
projects initiated to address key women's health issues, while 
simultaneously building partnerships between ACOG Members and public 
health leadership.
    The Partnership works specifically with psychosocial issues that 
greatly impact the health and well being of women. The morbidity and 
mortality attributed to issues such as a woman's depression, tobacco 
use, substance abuse and domestic violence are becoming increasingly 
apparent as they weigh on both the woman and her entire family. Without 
treatment, these psychosocial issues place a heavy financial burden on 
state and federal resources. Obstetrician-gynecologists play a critical 
role in addressing these problems within their current practice, 
however because of the complexity and the importance of promptly 
linking at-risk women with appropriate services, responsibility for 
full psychosocial assessment and treatment cannot fall solely on 
obstetrician-gynecologists. Partnerships between women's health care 
physicians and state and community programs are needed that allow for 
integration of medical care with psychosocial services. Partnerships 
increase coordination thereby minimizing demands on both the behavioral 
health care system and individual providers. Provider's Partnership 
enables stakeholders to improve prevention interventions, so that later 
complications can be avoided.
    There are currently 30 state-level Partnership teams focused on 
depression in women, tobacco use, perinatal HIV transmission and oral 
health. These teams have been successful at surveying obstetric 
providers on their screening; counseling and referral practices for 
perinatal depression and tobacco use, the results of which have been 
the basis for the development of statewide legislative and practice 
policy guidelines; establishing pilot screening and intervention 
initiatives for depression in women; and instituting provider training 
and technical assistance for depression and tobacco use screening and 
intervention. Despite their successes, these teams still struggle for 
funds to offset administrative and program costs. Representatives from 
additional states have expressed an interest in developing an ACOG 
Provider's Partnership, however, any new efforts are being postponed 
until additional funding can be identified.
    Interagency cooperation to address the multiple factors that affect 
maternal and child health will help us increase our Nation's overall 
health. By continuing to translate research done at the NICHD on high-
risk pregnancies, drug metabolism, and preterm births, into positive 
outreach programs such as NFIMR and the Provider's Partnership, we can 
further improve maternal health and reduce infant mortality.
    Again, we would like to thank the Committee for its continued 
support of maternal and child health research and programs. We strongly 
urge this Committee to support increased funding for the National 
Institute of Child Health and Human Development (NICHD), and renewed 
appropriations for the National Fetal Mortality Review (NFIMR) and the 
Provider's Partnership programs. This funding would significantly 
increase the number of women and families who benefit from smoking 
cessation programs, depression screening, and community specific 
solutions to infant mortality. Through joint community and government 
efforts we can decrease the harmful consequences these issues have on 
the Nation's health.
    We further urge the Committee and the Congress to pass a 
requirement that the NICHD Advisory Council include no fewer than three 
experts in the field of ob-gyn, to ensure a bright future for 
advancements in women's health.
                                 ______
                                 
          Prepared Statement of the American Heart Association

    Heart disease, stroke and other cardiovascular diseases kill more 
Americans each year than the next 5 leading causes of death combined, 
putting people of all ages at risk. Cardiovascular diseases remain our 
nation's No. 1 killer and a major cause of disability. We are concerned 
that our government is still not devoting sufficient resources for 
research and prevention to America's No. 1 killer--heart disease--and 
to our country's No. 3 killer--stroke.

                  STILL NO. 1--AN UNHAPPY DISTINCTION

    Cardiovascular diseases represent a continuing crisis of pandemic 
proportions. More than 70 million Americans suffer from these diseases, 
and risk factors are on the rise. About 65 percent of American adults 
are overweight or obese and an estimated 9.2 million children and 
adolescents ages 6-19 are overweight or obese. Also, an estimated 65 
million Americans have high blood pressure, nearly 38 million adults 
have high cholesterol, and nearly 14 million have diagnosed diabetes. 
Cardiovascular diseases cost Americans more than any other disease--an 
estimated $394 billion in medical expenses and lost productivity in 
2005. Heart defects are the most common birth defect and cause more 
infant deaths than any other birth defect.

               HEART DISEASE AND STROKE. YOU'RE THE CURE

    Now is the time to capitalize on our progress in understanding 
heart disease, stroke and other cardiovascular diseases. Promising, 
cost-effective breakthroughs in treatment and prevention are available, 
and new ones are on the horizon. A continued, sustained investment in 
the NIH and appropriate funding for NIH heart disease and stroke will 
support critically needed new initiatives, especially in the 
translation of that research into useful clinical and state programs. 
For fiscal year 2006, we urge you to:

Appropriate $30 billion for the National Institutes of Health (NIH)--to 
        provide a continued, sustained investment in life-saving 
        medical research
    NIH research provides new treatment and prevention strategies, 
creates jobs, and maintains America's status as the world leader in the 
biomedical and biotechnology industries.

Provide $2.3 billion for NIH heart research and $341 million for NIH 
        stroke research
    Researchers are on the brink of advances to enhance prevention and 
to provide new treatments so you and your loved ones can be spared the 
pain and suffering of heart disease and stroke. For example, the impact 
of co-morbidities on the progression of atherosclerosis and on its 
prevention and treatment needs further study. In terms of the well-
recognized epidemic of obesity, research is needed on the science of 
weight regulation, on both the genetic and environmental bases of 
obesity, and on nutrition and exercise science. Inter-Institute 
communication and joint programs, which have been encouraged by the 
Director, should continue to grow, particularly in areas such as growth 
and development, atherosclerosis, obesity and diabetes among others.

Allot $55.6 million for Heart Disease and Stroke for the CDC to expand, 
        intensify and coordinate prevention initiatives such as the 
        State Heart Disease and Stroke Prevention Program and the Paul 
        Coverdell National Acute Stroke Registry
    Science must be translated into state programs that hearten 
Americans to make healthy lifestyle choices to avert and control heart 
disease and stroke and track and improve stroke care delivery.

Allocate $15 million to continue to help rural and community areas 
        treat cardiac arrest in time to save lives by initiating 
        automated external defibrillator (AEDs) programs
    The Rural Access to Emergency Devices Act (part of Public Law 106-
505) and the Community Access to Emergency Defibrillation Act (part of 
Public Law 107-188) help rural and community areas purchase AEDs and 
train emergency and lay responders in their use.

            HEART AND STROKE RESEARCH BENEFITS ALL AMERICANS

    Thanks to advances in addressing risk factors and in treating 
cardiovascular diseases, more Americans are surviving these often 
deadly and disabling diseases. Heart disease and stroke research, 
prevention and treatment breakthroughs are saving and improving lives. 
Several examples follow.
    Automated External Defibrillator.--Each year, 250,000 Americans die 
from cardiac arrest. Training volunteers to perform cardiopulmonary 
resuscitation and to use an AED--a briefcase-size device that shocks 
the heart into a normal rhythm--distributed in shopping malls, sports 
venues and other public places can double the survival rate of cardiac 
arrest victims.
    Implantable Cardioverter Defibrillator.--An ICD, which provides an 
electrical impulse to correct an often fatal irregular heart beat, 
notably reduces deaths in heart failure patients. So, the government 
announced an expansion of the number of Medicare recipients eligible to 
receive ICDs. They estimate that about 25,000 Medicare beneficiaries 
will receive ICDs in the first year, possibly saving up to 2,500 lives. 
These patients are required to share information about their condition, 
so medical professionals can assess which individuals are helped the 
most by ICDs.
    Women and Low-Dose Aspirin.--A study found that low-dose aspirin on 
alternative days did not prevent first heart attacks or death from 
cardiovascular diseases in women, but clot-based strokes were 
significantly reduced, with the greatest benefit in women age 65 and 
older.
    Ultrasound in Combination with tPA Enhances Drug's Effectiveness 
Against Stroke.--Tissue plasminogen activator (tPA) effectively 
dissolves clots that are causing an acute clot-based stroke. But, using 
ultrasonography, a non-invasive technique that uses sound waves, in 
combination with tPA improves the drug's clot busting abilities, 
leading to improved chances for a better recovery from stroke.
    We join other members of the research community in advocating for 
an fiscal year 2006 appropriation of $30 billion for the NIH to provide 
a continued, sustained investment in life-saving medical research and 
support investigation into new therapies. The NIH budget for heart 
disease and stroke remains disproportionately under-funded compared to 
the enormous burden of these diseases and the numerous promising 
scientific opportunities that could advance the fight against these 
disorders. Heart disease, stroke and other cardiovascular diseases meet 
the NIH's criteria for priority setting (public health needs, 
scientific quality of research, scientific progress potential, 
portfolio diversification and adequate infrastructure support), but the 
NIH continues to invest only 7 percent of its budget on heart research 
and a mere 1 percent on stroke research. We have a particular interest 
in individual NIH components that relate directly to our mission. Our 
funding recommendations for these Institutes follow.

         HEART RESEARCH CHALLENGES AND OPPORTUNITIES FOR NHLBI

    Advances have been made by more than 50 years of American Heart 
Association-funded research and more than a half-century of investment 
by Congress in the National Heart, Lung, and Blood Institute. While 
more people survive heart disease and stroke, they can cause permanent 
disability, requiring costly medical care and loss of productivity and 
quality of life.
    We urge this Committee to appropriate funding for the NHLBI and for 
its heart disease and stroke-related efforts to support and expand 
current activities and to invest in promising and critically needed new 
initiatives to aggressively advance the battle against heart disease 
and stroke. To accomplish this goal, we advocate an appropriation of 
$3.1 billion for the NHLBI, including $1.9 billion for heart disease 
and stroke. This added investment is needed to focus on heart disease 
and stroke challenges and opportunities. Several of these follow.
    Heart Failure Clinical Research Network.--Despite advances in 
treatment, the number of new cases and the number of Americans 
suffering from heart failure continue to grow. And, the long-term 
prognosis for patients remains poor. A planned research network with 
the capability of implementing multiple concurrent clinical studies 
would conduct clinical studies of new approaches to improve outcomes 
and would provide an infrastructure to enable rapid translation of 
promising research findings into patient care.
    Novel Targets and Therapy Development for Clot-based Stroke.--There 
is only one FDA-approved emergency treatment for clot-based stroke: t-
PA. However, fewer than 5 percent of patients receive it, largely 
because it must be given within three hours from the onset of symptoms. 
To address an urgent need to develop new therapies, the NHLBI and the 
National Institute of Neurological Disorders and Stroke (NINDS) have 
planned a collaborative effort to identify new molecular targets, 
explore promising agents, and develop innovative therapies to quickly 
restore blood flow to the brain and limit stroke damage.
    Technologies for Engineering Small Blood Vessels.--A need exists to 
develop alternatives to natural blood vessels for patients who require 
heart artery bypass surgery and for children born with complex heart 
defects because the supply of native blood vessels to use as grafts 
does not meet the demand and prosthetic grafts fail at an unacceptable 
rate. Planned research would address the development of functional, 
small blood vessel substitutes.
    Specialized Centers of Clinically Oriented Research for Vascular 
Injury, Repair, and Remodeling.--The NHLBI has planned a new SCCOR 
program to conduct interdependent clinical and multidisciplinary basic 
research projects on the molecular and cellular mechanisms of vascular 
(blood vessel) injury, repair, and remodeling. This program would 
promote patient-oriented research to improve prevention, detection, and 
treatment of vascular diseases, such as stroke. The SCCORs would 
provide resources to enable new clinical investigators to develop 
skills and research capabilities to conduct relevant research in this 
area.

         STROKE RESEARCH CHALLENGES AND OPPORTUNITIES FOR NINDS

    Stroke is the No. 3 killer of Americans and a major cause of 
permanent disability. Many of America's 5.4 million stroke survivors 
face debilitating physical and mental impairment, emotional distress 
and huge medical costs. About 1 in 4 stroke survivors is permanently 
disabled. An estimated 700,000 Americans will suffer a stroke this 
year, and nearly 163,000 will die. In addition to the elderly, stroke 
also strikes newborns, children and young adults.
    We urge you to provide sufficient funding for the NINDS to support 
and expand current activities and to invest in promising and critically 
needed new initiatives to aggressively prevent stroke, protect the 
brain during stroke and enhance rehabilitation. To accomplish this 
goal, we advocate for an fiscal year 2006 appropriation of $1.6 billion 
for the NINDS, including $183 million for stroke. Some challenges and 
opportunities follow.
    Strategic Stroke Research Plan.--As a result of congressional 
report language during the fiscal year 2001 appropriations process, the 
NINDS convened a Stroke Progress Review Group (SPRG). Their report 
serves as a guide for a long-range strategic planning for stroke and 
includes 5 research priorities and 7 resource priorities to be 
addressed in the coming years. Multiple scientific programs initiated 
since the SPRG report are making impressive progress. But, more funding 
is needed to continue to implement these activities and other 
components of the plan.
    Emerging Stroke Risk Factors.--Although more Americans are 
controlling major stroke risk factors, such as high blood pressure and 
smoking, the number of stroke victims continues to rise. Scientists are 
defining new risk factors and re-examining the role of existing ones. 
Researchers are studying the role of inflammation in damaging arteries, 
heart valve disease, irregular heartbeats, and the long-term effects of 
high blood pressure. Increased funding for new approaches in these 
areas may lead to new ways to prevent stroke.
    Therapeutic Strategies for Stroke.--Several major clinical trials 
have identified new methods for preventing and treating stroke in high-
risk populations, including stroke survivors. But, as the number of 
strokes increases and disparities in treatment persist, funding for 
translational and clinical studies is vital to providing cutting-edge 
stroke treatment and prevention.
    Stroke Education.--As a member of the Brain Attack Coalition, 
organizations devoted to fighting stroke, we work with the NINDS to 
increase public awareness of stroke symptoms and the need to call 9-1-
1. Together, we initiated a public education campaign, Know Stroke: 
Know the Signs, Act in Time, and we are striving to develop systems to 
make tPA available to appropriate patients. In partnership with the 
CDC, the NINDS extended this campaign to launch a grassroots program 
called Know Stroke in the Community to enlist the aid of ``Stroke 
Champions'' who educate communities about stroke signs and symptoms. A 
pilot phase of the program in 5 cities has just been completed. When 
these measures are implemented, stroke treatment will shift from 
supportive care to early brain-saving intervention. But more funding is 
needed to educate the public and health providers about stroke.

   RESEARCH IN OTHER NIH INSTITUTES BENEFIT HEART DISEASE AND STROKE

    Research seeking to prevent and find better treatments for heart 
disease, stroke and other cardiovascular diseases is supported by other 
NIH entities like the National Institute on Aging, the National 
Institute of Diabetes and Digestive and Kidney Diseases, the National 
Institute of Nursing Research, the National Institute of Child Health 
and Human Development and the National Center for Research Resources. 
It is important to provide sufficient additional resources for these 
entities to continue and expand their critical work.

               AGENCY FOR HEALTHCARE RESEARCH AND QUALITY

    The AHRQ is a critical partner with the public and private health 
care sectors. They help develop evidence-based information needed by 
consumers, providers, health plans and policymakers to improve health 
care decision making. We join with the Friends of AHRQ in advocating 
for an appropriation of $440 million for the AHRQ to advance health 
care quality, cut medical errors and expand the availability of health 
outcomes information.

               CENTERS FOR DISEASE CONTROL AND PREVENTION

    Prevention is the best way to protect Americans' health and ease 
the financial and human burden of disease. Resources must be made 
available to bring the benefits of research to places where heart 
disease and stroke strike--our towns and neighborhoods. The CDC builds 
a bridge between what we learn in the lab, translating findings into 
programs in the communities where we live. We advocate an fiscal year 
2006 appropriation of $8.7 billion for the CDC, with a 10 percent 
increase over current funding for state-based chronic disease 
prevention and health promotion programs.
    Within that figure, we support an appropriation of $55.6 million 
for the CDC's Heart Disease and Stroke line--which would bring per 
capita spending for heart disease, stroke and other cardiovascular 
disease prevention from 10 cents to about 12 cents. This would allow 
the CDC to better expand, intensify and coordinate prevention 
activities against these diseases, such as enhancing the State Heart 
Disease and Stroke Prevention Program and the Paul Coverdell National 
Acute Stroke Registry. It would also allow the CDC to begin the 
development of a state-based cardiac arrest registry, augment current 
health communication projects on heart attack and stroke signs and 
symptoms, as well as public and health care provider education; and 
support critical standardization of lipid and other measurements.
    We commend Congress for encouraging the CDC to create a Heart 
Disease and Stroke Division. With ample resources and capacity, a 
Division would further enable CDC's efforts in this area. Thanks to 
this Committee's support since fiscal year 1998, the CDC's State Heart 
Disease and Stroke Prevention Program covers 33 states, allowing them 
to design and/or implement state-tailored prevention programs. But only 
12 states receive funding to actually implement programs to prevent and 
control heart disease and stroke. The other 21 states were only 
provided funds to support program planning; which is now largely 
complete. Since cardiovascular diseases remain the No. 1 killer in 
every state, each state needs funding for basic implementation of a 
State Heart Disease and Stroke Prevention Program. With fiscal year 
2005 funding, the CDC can only elevate up to two states from planning 
to program implementation.
    An appropriation of $55.6 million would allow the CDC to add up to 
4 new states to the State Heart Disease and Stroke Prevention Program, 
allowing them to conduct a state-tailored prevention plan, and would 
elevate 4 more states to from planning to program implementation. It 
would enhance the Paul Coverdell National Acute Stroke Registry, which 
tracks and improves delivery of acute stroke care that can mean the 
difference between a fairly normal life and long-term disability. After 
developing and conducting 8 registry prototypes (fiscal year 2001-
2003), the CDC funded 4 state health departments to implement 
registries in fiscal year 2004.
    We recommend the following fiscal year 2006 funding levels for the 
following CDC programs:
  --$132 million for the Preventive Health and Health Services Block 
        Grant;
  --$70 million for the Obesity, Physical Activity and Nutrition 
        Program;
  --$50 million for the Youth Media Campaign;
  --$82.4 million for the School Health Education Program; and
  --$145 million for the Office of Smoking and Health.
             health resources and services administration.
    About 95 percent of cardiac arrest victims die before reaching a 
hospital. AEDs are small, easy-to-use devices that can shock a heart 
back into normal rhythm and restore life. The Rural Access to Emergency 
Devices Act and the Community Access to Emergency Defibrillation Act 
authorize funds for state and local governments to start AED programs. 
States, cities and towns nationwide eagerly await funds from these 
vital public health service grant awards, with available funds far 
below requests. An appropriation of $15 million is required to support 
these authorized programs.

                        DEPARTMENT OF EDUCATION

    Physical inactivity is a key risk factor for heart disease and 
stroke. Yet, our youth have fewer chances for physical education. 
Congress has been appropriating money for the Carol M. White Physical 
Education Program (PEP) to provide funding for school-based physical 
education initiatives that teach life-long physical activity habits and 
thus prevent diseases, like heart disease and stroke. We advocate for 
an appropriation of $100 million for PEP.

                             ACTION NEEDED

    Despite progress, heart disease, stroke and other cardiovascular 
diseases remain America's No. 1 killer. Cardiovascular diseases meet 
the NIH's criteria for priority setting, but NIH continues to invest 
only 7 percent of its budget on heart research and a mere 1 percent on 
stroke research. Increasing funding for promising research 
opportunities and for proven prevention and treatment programs will 
allow continued strides against these diseases. Our government's 
response to this challenge will help define the health and well being 
of Americans for decades.
                                 ______
                                 
    Prepared Statement of the Americans for Nursing Shortage Relief 
                                Alliance

    The ANSR Alliance (Americans for Nursing Shortage Relief) 
appreciates the opportunity to submit written comments for the record 
regarding funding for nursing workforce and research programs in fiscal 
year 2006. ANSR is a coalition of 48 nursing organizations representing 
a diverse cross section of healthcare and professional organizations, 
healthcare providers, and friends of nursing that have united to 
address the ever-growing nursing shortage.
    To ensure that the nation has a sufficient and adequately prepared 
nursing workforce to provide quality care to all well into the 21st 
century, ANSR and the nation's 2.7 million registered and advanced 
practice registered nurses (RNs and APRNs) advocate at least $210 
million for the nursing workforce programs within Title VIII of the 
Public Health Service Act at the Health Resources and Services 
Administration (HRSA) as well as $160 million for the National 
Institute of Nursing Research (NINR) at the National Institutes of 
Health (NIH) in fiscal year 2006. ANSR stands ready to work with 
policymakers at the federal level to advance policies and programs that 
will sustain and strengthen the nation's nursing workforce.

                      NURSING SHORTAGE BACKGROUND

    Nursing is the nation's largest healthcare provider group with an 
estimated 2.7 million licensed nurses. Nurses play a critical role in 
the health care system because they represent approximately 54 percent 
of all health care workers and provide patient care in virtually all 
locations in which health care is delivered. Our ability, as a nation 
to meet these projected workforce needs is complicated by a number of 
factors.
  --The total nursing workforce is aging. By 2010, the average age of 
        RNs is forecasted to be 45.4 years, an increase of 3.5 years 
        over the current age, with more than 40 percent of the RN 
        workforce expected to be older than 50 years.
  --Approximately half of the RN workforce is expected to reach 
        retirement age within the next 10 to 15 years. The average age 
        of new RN graduates is 31 years; RNs are entering the 
        profession older and will have fewer years to work than nurses 
        traditionally have had.
  --For the first time, registered nurses top the U.S. Bureau of Labor 
        Statistics list of occupations with the largest projected 10-
        year job growth. Nurses have been on the list for some time but 
        never as number one. The Bureau's latest projections put the 
        demand for registered nurses at 2.9 million in 2012, up from 
        2.3 million in 2002.
  --The national nursing shortage also is affecting our nation's 7.6 
        million veterans who receive care through the 1,300 Veterans 
        Administration (VA) health care facilities.
  --Nearly 1,800 faculty members leave their positions and fewer than 
        400 potential faculty candidates receive doctoral degrees each 
        year.
  --For the 2003-2004 academic year, an estimated 125,000 qualified 
        applicants were turned away from nursing programs at all levels 
        due largely to a faculty shortage.

             ADEQUATE NURSING WORKFORCE: HOMELAND SECURITY

    Homeland security efforts try to prevent harm to our country, and 
nurses play a critical role. These efforts involve the health system, 
and nurses represent the largest group of health care providers who 
will be called on to respond to an emergency, disaster, or mass-
casualty event. The estimates for the nurse workforce demand in 2010 do 
not take into account the healthcare system's ability to meet the 
healthcare needs of a surge of patients that could be expected from a 
mass-casualty event, whether natural or man-made. Given the findings of 
the bipartisan 9-11 Commission, it seems particularly relevant now to 
ensure an adequate supply of all levels of nurses, who are often front-
line, first-responders in the case of tragedy. Unless steps are taken 
now, the nation's ability to respond to a natural or intentional 
disaster will be impeded by the growing nationwide nursing shortage. An 
investment in the nurse workforce is a step in the right direction to 
re-build the public health infrastructure and increase our nation's 
healthcare readiness and emergency response capabilities.

                           GROWING UNMET NEED

    Fortunately--after years of failing to have enough interested 
individuals to pursue nursing--our nation is finally seeing a slight 
upturn in nursing school applications. Many Americans, who have lost 
their jobs due to the economy, and others interested in a second 
career, find nursing attractive because of the job security, sufficient 
pay, and the opportunity it affords to help others. However, nursing 
organizations are hearing from prospective nursing students that they 
face waiting periods of up to 3 years before they can matriculate 
because there is not enough teaching faculty available. In many cases, 
students who have been accepted into programs face long waits to 
matriculate in nursing school due to these challenges. For example, in 
2004, U.S. nursing schools turned away more than 32,000 qualified 
applicants to entry-level baccalaureate and graduate nursing programs 
due to insufficient faculty, clinical sites, classroom space, clinical 
preceptors, and budget constraints, including almost 3,000 students who 
could potentially fill faculty roles. When nursing programs of all 
levels are considered, the number of qualified applicants turned away 
during the 2003-2004 academic year grows to more than 125,000. Without 
sufficient support for current nursing faculty and adequate incentives 
to encourage more nurses to become faculty--our nation will fail to 
have the teaching infrastructure necessary to educate and train the 
next generation of nurses we need so desperately to care for our family 
and friends, neighbors, colleagues, and ourselves.
    Enacted in 2002, the Nurse Reinvestment Act included new and 
expanded initiatives, including loan forgiveness, scholarships, career 
ladder opportunities, and public service announcements to advance 
nursing as a career. Despite the enactment of this critical measure, 
HRSA fails to have the resources necessary to meet the current and 
growing demands for our nation's nursing workforce. For example, in 
fiscal year 2003, HRSA received 8,321 applications for the Nurse 
Education Loan Repayment Program, but only had the funds to award 7 
percent (602) of all applications. Also in fiscal year 2003, HRSA 
received 4,512 applications for the Nursing Scholarship Program, but 
only had funding to support a mere 2 percent (94) of all applications.
    Therefore, the ANSR Alliance strongly urges Congress to provide 
HRSA with a minimum of $210 million in fiscal year 2006 to ensure that 
the agency has the resources necessary to fund a higher rate of Nurse 
Education Loan Repayment and Nursing Scholarship applications as well 
as implement other essential endeavors to sustain and boost our 
nation's nursing workforce.

            SUSTAIN AND SEIZE NURSING RESEARCH OPPORTUNITIES

    The National Institute of Nursing Research (NINR) supports basic 
and clinical research to establish a scientific basis for the care of 
individuals across the life span--from management of patients during 
illness and recovery to the reduction of risks for disease and 
disability and the promotion of healthy lifestyles. These efforts are 
crucial in translating scientific advances into cost-effective health 
care that does not compromise quality of care for patients. 
Additionally, NINR fosters collaborations with many other disciplines 
in areas of mutual interest such as long-term care for older people, 
the special needs of women across the life span, bioethical issues 
associated with genetic testing and counseling, and the impact of 
environmental influences on risk factors for chronic illnesses such as 
cancer. The ANSR Alliance supports a fiscal year 2006 appropriation 
level of $160 million for the NINR at the National Institutes of 
Health.

                               CONCLUSION

    The ANSR Alliance stands ready to work with policymakers to advance 
policies and support programs that will sustain and strengthen our 
nation's nursing workforce. We thank you for this opportunity to 
discuss the funding levels necessary to ensure that our nation has a 
sufficient nursing workforce to care for the patients of today and 
tomorrow.

----------------------------------------------------------------------------------------------------------------
                                                                               President's
                   Programmatic area                     Final fiscal year    budget fiscal      ANSR's request
                                                                2005            year 2006
----------------------------------------------------------------------------------------------------------------
Nurse Workforce Development Programs...................       $151,889,000       $150,000,000       $210,000,000
National Institute of Nursing Research.................        138,000,000        139,000,000        160,000,000
----------------------------------------------------------------------------------------------------------------

    ANSR Alliance Organizations that endorse this testimony: American 
Association of Critical-Care Nurses; American Association of 
Occupational Health Nurses, Inc.; American Academy of Nurse 
Practitioners; American College of Nurse Practitioners; American 
Nephrology Nurses Association; American Society of PeriAnesthesia 
Nurses; Association of periOperative Registered Nurses; Association of 
State and Territorial Directors of Nursing; Association of Women's 
Health, Obstetric and Neonatal Nurses; Emergency Nurses Association; 
Infusion Nurses Society; National Association Nurse Massage Therapists; 
National Association of Orthopaedic Nurses; National Association of 
Pediatric Nurse Practitioners; National Association of School Nurses; 
National Council of State Boards of Nursing; National League for 
Nursing; National Nursing Centers Consortium; National Student Nurses' 
Association; Nurses Organization of Veterans Affairs; Oncology Nurses 
Society; Society of Trauma Nurses; and Society of Urologic Nurses and 
Associates.
                                 ______
                                 
         Prepared Statement of the American Nurses Association

    The American Nurses Association (ANA) appreciates this opportunity 
to comment on fiscal year 2006 appropriations for nursing education, 
workforce development, and research programs. Founded in 1886, ANA is 
the only full-service national association representing registered 
nurses. Through our 54 constituent member associations, we represent 
registered nurses (RNs) across the nation in all practice settings.
    The ANA gratefully acknowledges this Subcommittee's history of 
support for nursing education and research. We appreciate your 
continued recognition of the important role nurses play in the delivery 
of quality health care services. This testimony will give you an update 
on the status of the nursing shortage, its impact on the nation, and 
the outlook for the future.

                       THE NURSING SHORTAGE TODAY

    The nursing shortage is far from solved. Here are a few quick 
facts:
  --On February 11, 2004, the Bureau of Labor Statistics reported that 
        registered nursing will have the greatest job growth of all 
        U.S. professions in the time period spanning 2002-2012. During 
        this 10-year period, health care facilities will need to fill 
        more than 1.1 million RN job openings.
  --The Division of Nursing at the Health Resources and Services 
        Administration projects that, absent aggressive intervention, 
        the supply of nurses in America will fall 29 percent below 
        requirements by the year 2020.
  --The American College of Healthcare Executives reported in October, 
        2004 that 72 percent of hospitals were experiencing a nursing 
        shortage at their facility.
  --According to the National Council of State Boards of Nursing, the 
        number of first-time, U.S. educated nursing school graduates 
        who sat for the NCLEX-RN (the national licensure examination 
        for registered nurses) decreased by 20 percent from 1995-2003. 
        A total of 19,820 fewer students in this category of test 
        takers sat for the exam in 2003 as compared with 1995.
    This growing nursing shortage is having a detrimental impact on the 
entire health care system. Numerous recent studies have shown that 
nursing shortages contribute to medical errors, poor patient outcomes, 
and increased mortality rates. A study based on a review of more than 6 
million patients was published in the New England Journal of Medicine 
in May, 2002. The researchers found that hospitalized patients had 
better outcomes when the number of hours of RN care per day increased. 
Specifically, nursing shortages were found to correlate with longer 
lengths of stay, increased incidence of urinary tract infections and 
upper gastrointestinal bleeding, higher rates of pneumonia, shock and 
cardiac arrest. Increased hours of RN care resulted in fewer ``failure-
to-rescue'' deaths from pneumonia, shock or cardiac arrest, upper 
gastrointestinal bleeding, sepsis and deep venous thrombosis.
    Research published in the October 23, 2002 Journal of the American 
Medical Association demonstrated that more nurses at the bedside could 
save thousands of patient lives each year. In reviewing more than 
232,000 surgical patients at 168 hospitals, researchers from the 
University of Pennsylvania concluded that a patient's overall risk of 
death rose roughly 7 percent for each additional patient above four 
added to a nurse's workload.
    A Joint Commission on the Accreditation of Healthcare Organizations 
(JCAHO) study published in 2002 shows that nearly one-quarter of all 
unanticipated deaths or injuries result from a lack of adequate nursing 
care.

          THE IMPACT ON PREPAREDNESS AND MILITARY HEALTH CARE

    This growing nursing shortage has effects well beyond domestic 
health care. RNs are integral in everything from adequate terrorism 
preparedness, to veterans' health delivery, to disaster response. In 
the event of a terrorist attack, nurses will be needed to evaluate 
patients, administer vaccines and medications, perform disease 
surveillance, and to train non-licensed staff. The Agency for 
Healthcare Research and Quality has developed a model to determine the 
number of health staff needed for these activities. According to this 
model, a small-scale anthrax attack in New York City would require 
18,981 trained staff working around the clock for four days to provide 
needed testing and antibiotics. A contained, small-scale smallpox 
attack in Columbus, OH would require 2,296 patient-care staff working 
around the clock for 4 days. The GAO reports that five out of 7 states 
have claimed that nursing shortages are hindering their bioterrorism 
preparedness efforts.
    The nursing shortage is also stressing military health care 
delivery. Because the military holds the vast majority of its health 
care assets in the reserves, the reserve activation has been 
particularly hard on nursing. There are currently more than 19,000 RNs 
providing care through the military reserves. As these nurses are drawn 
out of the domestic labor pool, the shortage is exacerbated.
    The Army, Navy, and Air Force are offering lucrative RN recruitment 
packages that include large sign-on bonuses, generous scholarships, and 
loan forgiveness packages. Yet, for the last 2 years the Army has not 
met its RN recruiting goals for either the active service or the 
reserves. The Air Force has not met its recruiting goals for the last 5 
years. Therefore, this shortage impacts our very strength as a nation.

                 NURSING WORKFORCE DEVELOPMENT PROGRAMS

    Federal support for the Nursing Workforce Development Programs 
contained in Title VIII of the Public Health Service Act is 
unduplicated and essential. In 2002, the 107th Congress recognized the 
detrimental impact of the developing nursing shortage and passed the 
Nurse Reinvestment Act (Public Law 107-205). This law improved the 
programs of Title VIII to meet the unique characteristics of today's 
shortage. This significant achievement holds the promise of recruiting 
new nurses into the profession, promoting career advancement within 
nursing and improving patient care delivery. This promise will not be 
met, however, without a significant investment.
    In fiscal year 2004 this Subcommittee allocated $142 million in 
funding for Title VIII, this supported 28,253 individual student 
nurses. In fiscal year 2005, the hard work of this Subcommittee 
resulted in $151 million in funding for Title VIII programs. ANA 
strongly urges you to increase funding for Title VIII programs by at 
least $24 million to a total of $175 million in fiscal year 2006. The 
nursing shortage and its impact on the health care of the nation demand 
this continued investment.
    In 1974, this Subcommittee invested $153.6 million Title VIII. 
Inflated to today's dollars, this long-ago appropriation would equal 
$592 million, approximately four times the current appropriation. 
Certainly, today's shortage is more dire and systemic than that of the 
1970's; it deserves an equivalent response.
    Title VIII includes the following program areas:
    Nursing Education Loan Repayment Program & Scholarships.--This line 
item is comprised of the Nurse Education Loan Repayment Program (NELRP) 
and the Nursing Scholarship Program (NSP), the Secretary of HHS has the 
authority to allocate funds between the two areas. The NELRP repays 
nursing student loans in return for at least two years of practice in a 
facility with a critical nursing shortage. For the first two years of 
service, the NELRP will repay 60 percent of the RN's student loan 
balance. If the nurse elects to stay for another year, an additional 25 
percent of the loan will be repaid. Within 3 years, a nurse can pay off 
85 percent of his/her student loans.
    The NELRP boasts a proven track record of delivering nurses to 
facilities hardest hit by the nursing shortage. HRSA has given NELRP 
funding preference to RNs who work in skilled nursing facilities, 
disproportionate share hospitals, and departments of public health. 
However, lack of funding has hindered the full implementation of this 
program. In fiscal year 2004, HRSA received more than 4,800 
applications for the NELRP. Due to lack of funding, only 857 loan 
repayments were awarded. Therefore, 82 percent of the nurses willing to 
immediately begin practicing in facilities hardest hit by the shortage 
were turned away from this program.
    The nursing scholarship program offers funds to nursing students 
who, upon graduation, agree to work for at least two years in a health 
care facility with a critical shortage of nurses. Preference is given 
to students with the greatest financial need. Like the loan repayment 
program, the nursing scholarship program as been stunted by a lack of 
funding. In fiscal year 2004, HRSA received more than 8,800 
applications for the nursing scholarship. Due to lack of funding, a 
mere 126 scholarships were awarded. Therefore, 98 percent of the 
nursing students willing to work in facilities with a critical shortage 
of nurses were denied access to this program.
    Nurse Faculty Loan Program.--This program establishes a loan 
repayment fund within schools of nursing to increase the number of 
qualified nurse faculty. Nurses may pursue a master's or doctoral 
degree. They must agree to teach at a school of nursing in exchange for 
cancellation of up to 85 percent of their educational loans, plus 
interest, over a 4-year period. Loans can cover the costs of tuition, 
fees, books, laboratory expenses, and other reasonable education 
expenses.
    This program is vital given the critical shortage of nursing 
faculty. America's schools of nursing can not increase their capacity 
without an influx of new teaching staff. Last year, schools of nursing 
were forced to turn away tens of thousands of qualified applicants due 
largely to the lack of faculty. In fiscal year 2004, HRSA awarded 61 
nurse faculty loan repayments.
    Nurse Education, Practice, and Retention Grants.--This section 
contains grant areas designed to expand enrollments in baccalaureate 
nursing programs; develop internship and residency programs to enhance 
mentoring and specialty training, and; provide new technologies in 
education including distance learning. Practice grant are designed to 
expand practice arrangements in non-institutional settings to improve 
primary health care in medically underserved communities; provide care 
for underserved populations; provide skills necessary to practice in 
existing and emerging health systems, and; develop cultural 
competencies. Retention grant areas include career ladders and improved 
patient care delivery systems. The career ladders program supports 
education programs that assist individuals in obtaining the educational 
foundation required to enter the profession, and to promote career 
advancement within nursing.
    Enhancing patient care delivery system grants are designed to 
improve the nursing work environment. It provides grants to facilities 
to enhance collaboration and communication among nurses and other 
health care professionals, and to promote nurse involvement in the 
organizational and clinical decision-making processes of a health care 
facility. These best practices for nurse administration have been 
identified by the American Nurse Credentialing Center's Magnet 
Recognition Program. These practices have been shown to double nurse 
retention rates, increase nurse satisfaction, and improve patient care.
    Nursing Workforce Diversity.--This program provides funds to 
enhance diversity in nursing education and practice. It supports 
projects to increase nursing education opportunities for individuals 
from disadvantaged backgrounds--including racial and ethnic minorities, 
as well as individuals who are economically disadvantaged. Racial and 
ethnic minorities currently comprise more than 25 percent of the 
nation's population and will comprise nearly 40 percent by the year 
2020. Only 12 percent of the RNs in the United States come from diverse 
backgrounds. Increasing the number of RNs from diverse races helps to 
address the prevention, treatment, and rehabilitation needs of an 
increasingly diverse population. For fiscal year 2004, HRSA received 
144 submissions for nursing workforce diversity grants. HRSA was only 
able to fund 20 (14 percent of applications).
    Advanced Nurse Education.--Advanced practice registered nurses 
(APRNs) are RNs who have attained advanced expertise in the clinical 
management of health conditions. Typically, an APRN holds a master's 
degree with advanced didactic and clinical preparation beyond that of 
the RN. Most have practice experience as RNs prior to entering graduate 
school. Practice areas include, but are not limited to: anesthesiology, 
family medicine, gerontology, pediatrics, mental health, midwifery, 
neonatology, and women's & adult health. Title VIII grants have 
supported the development of virtually all initial state and regional 
outreach models using distance learning methodologies to provide 
advanced study opportunities for nurses in rural and remote areas.
    These grants also provide traineeships for masters and doctoral 
students. Title VIII funds more than 60 percent of U.S. nurse 
practitioner education programs and assists 83 percent of nurse 
midwifery programs. Over 45 percent of advanced nursing graduates go on 
to practice in medically underserved communities, and in areas with 
large Medicaid populations. Many provide care to minority or 
disadvantaged patients. In fiscal year 2004, HRSA funded 82 advanced 
education nursing grants (78 percent of applications), 335 advanced 
education nursing traineeships (every application), and 73 nurse 
anesthetist traineeships (every application).
    Comprehensive Geriatric Education Grants.--This authority awards 
grants to train and educate nurses in providing health care to the 
elderly. Funds are used to train individuals who provide direct care 
for the elderly, to develop and disseminate geriatric nursing 
curriculum, to train faculty members in geriatrics, and to provide 
continuing education to nurses who provide geriatric care. The growing 
number of elderly Americans and the impending health care needs of the 
baby boom generation make this program critically important. In fiscal 
year 2004, HRSA continued 17 previously awarded grants.

             NATIONAL INSTITUTE OF NURSING RESEARCH (NINR)

    ANA also urges the Subcommittee to increase funding for the NINR, 
one of the institutes at the National Institutes of Health (NIH). 
Nursing research is an integral part of the effectiveness of nursing 
care. Advances in nursing care arising from nursing and other 
biomedical research improves the quality of patient care and has shown 
excellent progress in reducing health care costs. Research programs 
supported by NINR address a number of critical public health and 
patient care questions. The research is driven by real and immediate 
problems encountered by patients and families.
    Recent studies have revealed the difference in heart attack 
symptoms in women versus men, the most effective means to prevent 
infectious diseases in inner city households, the incidence and risk 
factors for uterine rupture in pregnancies following cesarean section, 
and the means to help family caregivers provide high-quality long, term 
care for loved ones with chronic health care needs. NINR is leading the 
NIH research on end-of-life and palliative care. NINR is the lowest 
funded institute at NIH. ANA recommends $160 million in fiscal year 
2006 funding for the NINR.

                               CONCLUSION

    While we appreciate the continued support of this Subcommittee, ANA 
is concerned by the fact that Title VIII funding levels have not been 
sufficient to assist qualified students enter the nursing profession. 
The nursing shortage will continue to worsen if significant investments 
are not made in nursing workforce development programs. Recent efforts 
have shown that aggressive and innovative recruitment efforts can help 
avert the impending nursing shortage--if they are adequately funded.
    ANA asks you to meet today's shortage with a relatively modest 
investment of $175 million in Title VIII programs. Additionally, an 
investment of $160 million in the NINR will help assure that these 
nurses are equipped with the information needed to provide the best 
care possible.
                                 ______
                                 
  Prepared Statement of the American Public Health Association (APHA)

    The American Public Health Association (APHA), the oldest 
organization of public health professionals, represents more than 
50,000 members from over 50 public health occupations. We are pleased 
to submit our views on federal funding for public health activities in 
fiscal year 2006.

         RECOMMENDATIONS FOR FUNDING THE PUBLIC HEALTH SERVICE

    APHA's budget recommendation concurs with the estimate developed by 
the Coalition for Health Funding: we believe the Public Health Service 
needs an increase of $3.5 billion in fiscal year 2006. This figure is 
based on the professional estimate of need and opportunity within each 
agency of the Public Health Service and would accommodate needed 
increases for the Centers for Disease Control and Prevention (CDC), the 
Health Resources and Services Administration (HRSA), the Substance 
Abuse and Mental Health Services Administration (SAMHSA), the Agency 
for Healthcare Research and Quality (AHRQ), and the National Institutes 
of Health (NIH), as well as agencies outside this subcommittee's 
jurisdiction--the Food and Drug Administration (FDA) and the Indian 
Health Service (IHS).

               CENTERS FOR DISEASE CONTROL AND PREVENTION

    APHA supports a funding level for the Centers for Disease Control 
and Prevention that enables it to carry out its mission to protect and 
promote good health and to assure that research findings are translated 
into effective state and local programs. It is time to support CDC as 
an agency--not just the individual programs that it funds. In the best 
professional judgment of the American Public Health Association, in 
conjunction with the CDC Coalition--given the challenges of terrorism 
and disaster preparedness, new and re-emerging infectious diseases, the 
epidemic of obesity, particularly among children, and our many unmet 
public health needs and missed prevention opportunities--the agency 
will require funding of at least $8.65 billion to support its mission 
for fiscal year 2006.
    APHA is pleased with the support the Subcommittee has given to CDC 
programs over the years, including your recognition of the need to fund 
Severe Acute Respiratory Syndrome (SARS) response efforts, obesity 
prevention, chronic disease prevention, and solutions to the shortage 
of the flu vaccine. By translating research findings into effective 
intervention efforts in the field, the agency has been a key source of 
funding for many of our state and local programs that aim to improve 
the health of communities. Perhaps more importantly, federal funding 
through CDC provides the foundation for our state and local public 
health departments, supporting a trained workforce, laboratory capacity 
and public health education communications systems.
    CDC also serves as the command center for our nation's public 
health defense system against emerging and reemerging infectious 
diseases. From anthrax to West Nile to smallpox to avian flu, the 
Centers for Disease Control and Prevention is the nation's--and the 
world's--expert resource and response center, coordinating 
communications and action and serving as the laboratory reference 
center. States and communities rely on CDC for accurate information and 
direction in a crisis or outbreak.
    In fiscal year 2002, Congress appropriated $7.7 billion for CDC. In 
fiscal years 2003, 2004 and 2005, Congress appropriated $7.1 billion, 
$7.2 billion, and $8.0 billion, respectively. Now the President's 
proposed budget for the agency in fiscal year 2006 is $7.5 billion--a 
$500 million cut from last year's funding, and $200 million below the 
fiscal year 2002 funding level. We are moving in the wrong direction. 
Public health is being asked to do more, not less. As far as we can 
tell, in light of the current workload placed on the public health 
service--in addition to the threat of emerging diseases such as the 
avian flu--it simply does not make any sense to cut the budget for CDC 
at a time when the threats to public health are so great. Funding 
public health outbreak by outbreak is not an effective way to ensure 
either preparedness or accountability.
    Furthermore, the President's budget proposes the elimination of two 
very important chronic disease prevention programs: the Preventive 
Health and Health Services Block Grant and the Childhood Obesity 
Prevention Program (COPP), also referred to as the VERB or CDC Youth 
Media campaign. As states use their Prevention Block Grant dollars to 
address high priority needs such as emerging and chronic diseases, 
child safety seat programs, suicide prevention, smoke detector 
distribution and fire safety programs, adult immunization, oral health, 
worksite wellness, infectious disease outbreaks, food safety, emergency 
medical services, safe drinking water, and surveillance needs--we can 
scarcely understand why the Prevention Block Grant should be 
eliminated. And the success of the COPP program shows that over 30 
percent of the target audience, children ages 9 to 10 years, increased 
their physical activity as a direct result of the VERB media campaign. 
This type of success warrants continued funding of a program to empower 
our children to respond to the growing concerns of the obesity epidemic 
and improve the health of this nation. We encourage the Subcommittee to 
restore the cuts and fund the Prevention Block Grant at $132 million 
and the COPP program at $70 million.
    Until we are committed to a strong public health system, every 
crisis will force trade offs. For instance, the Administration's recent 
reprogramming request to make up for the vaccine shortage with money 
originally appropriated by Congress for chronic disease prevention 
programs (COPP and the Preventive Health and Health Services Block 
Grant) and bioterror preparedness funds is the most recent concrete 
example of attention to one disease coming at the expense of another.
    We also encourage the Subcommittee to provide $10 million for CDC's 
Environmental Public Health Services Branch to revitalize environmental 
public health services at the national, state and local level. As with 
the public health workforce, the environmental health workforce is 
declining. Furthermore, the agencies that carry out these services are 
fragmented and their resources are stretched. These services are the 
backbone of public health and are essential to protecting and ensuring 
the health and well being of the American public from threats 
associated with West Nile virus, terrorism, E. coli and lead in 
drinking water.

              HEALTH RESOURCES AND SERVICES ADMINISTRATION

    HRSA programs assure that all Americans have access to our nation's 
best available health care services. HRSA provides a health safety net 
for medically underserved individuals and families, including 45 
million Americans who lack health insurance; African American infants, 
whose infant mortality rate is more than double that of whites; and the 
estimated 850,000 to 950,000 people living with HIV/AIDS. Programs to 
support the underserved place HRSA on the front lines in erasing our 
nation's racial/ethnic and rural/urban disparities in health status. 
HRSA funding goes where the need exists, in communities all over 
America. The agency's overriding goal is to achieve 100 percent access 
to healthcare, with zero disparities. In the best professional judgment 
of APHA, in conjunction with the Friends of HRSA Coalition, to respond 
to this challenge, the agency will require a funding level of at least 
$7.5 billion for fiscal year 2005.
    We are grateful to the Subcommittee for your consistent strong 
support for all of HRSA's programs, including the initiatives in 
terrorism preparedness and response in the past. Unfortunately, the 
president's budget overall recommends a massive $838 million or over 12 
percent cut to the agency for fiscal year 2006. We urge the members of 
the Subcommittee to restore the cuts and fund the agency at a level 
that allows HRSA to effectively implement these important programs.
    APHA is pleased that the Administration has requested a significant 
17.5 percent increase for Community Health Centers. More than 4,000 of 
these sites across the nation provide needed primary and preventive 
care to nearly 15 million poor and near-poor Americans. Health centers 
provide access to high-quality, family-oriented, culturally and 
linguistically competent primary care and preventive services, 
including mental and behavioral health, dental and support services. 
Nearly three-fourths of health center patients are uninsured or on 
Medicaid, approximately two-thirds are people of color, and more than 
85 percent live below 200 percent of the poverty level.
    However, we are once again very concerned that the HRSA health 
professions programs under Title VII and VIII have once again landed on 
the chopping block. Today our nation faces a widening gap between 
challenges to improve the health of Americans and the capacity of the 
public health workforce to meet those challenges. An adequate, diverse, 
well-distributed and culturally competent health workforce is 
indispensable to our national readiness efforts and to address critical 
health care needs. These programs help meet the health care delivery 
needs of the areas in this country with severe health professions 
shortages, at times serving as the only source of health care in many 
rural and disadvantaged communities. Therefore, the elimination of most 
funding for the Title VII health professions training programs and flat 
funding for Title VIII nurse training will only make certain that the 
needs of these medically underserved populations will not be met.
    Furthermore, we believe the elimination of the Healthy Community 
Access Program, universal newborn hearing screening programs, and the 
Emergency Medical Services for Children Program, especially when 
coupled with the flat-funding of the Maternal and Child Health Block 
Grant, will further undermine the availability of health services for 
some that are most in need--especially children. The Healthy Community 
Access Program is an example in which communities build partnerships 
among health care providers to deliver a broader range of health 
services to their neediest residents. This program of coordinated 
service delivery is innovative, not duplicative of other available 
programs, and therefore its elimination it of grave concern. Also, the 
proposed zero funding of universal newborn hearing screening programs 
in the Administration's budget will likely cause many hearing 
impairments in infants to go undetected, which can negatively impact 
speech and language acquisition, academic achievement, and social and 
emotional development. The proposed elimination of the Emergency 
Medical Services for Children Program will hurt many children who are 
eligible for Medicaid and SCHIP, but not enrolled due to state 
enrollment limits and budgetary pressures, and therefore frequently use 
emergency health services.
    We are very concerned that most programs under the Ryan White CARE 
Act, administered by HRSA's HIV/AIDS Bureau, would be flat-funded 
should the figures requested by the Administration be implemented. The 
CARE Act program is an important safety net program, providing an 
estimated 533,000 people access to services and treatments each year. 
At a time when HIV/AIDS is the fifth leading cause of death for people 
who are 25 to 44 years old in the United States, and the number of new 
domestic HIV/AIDS cases is increasing, not decreasing, flat funding 
these critical Ryan White Act programs does not make much sense.
    Through its many programs and new initiatives, HRSA helps countless 
individuals live healthier, more productive lives. In the 21st century, 
rapid advances in research and technology promise unparalleled change 
in the nation's health care delivery system. HRSA is well positioned to 
meet these new challenges as it continues to provide first-rate health 
care to the nation's most vulnerable citizens. We recommend growth in 
HRSA's budget to meet the needs of vulnerable populations served by the 
agency.

               AGENCY FOR HEALTHCARE RESEARCH AND QUALITY

    We request a funding level of $443 million for the Agency for 
Healthcare Research and Quality for fiscal year 2006, an increase of 
$124 million over last year. This level of funding is needed for the 
agency to fully carry out its Congressional mandate to improve health 
care quality, including eliminating racial and ethnic disparities in 
health, reducing medical errors, and improving access and quality of 
care for children and persons with disabilities. The cuts proposed in 
the administration budget will severely hamper these efforts.

       SUBSTANCE ABUSE AND MENTAL HEALTH SERVICES ADMINISTRATION

    APHA supports a funding level of $3.5 billion for the Substance 
Abuse and Mental Health Services Administration for fiscal year 2006, 
an increase of $262 million over last year. This funding level would 
provide support for substance abuse prevention and treatment programs, 
as well as continued efforts to address emerging substance abuse 
problems in adolescents, the nexus of substance abuse and mental 
health, and other serious threats to the mental health of Americans.

                DEPARTMENT OF HEALTH AND HUMAN SERVICES

    The budget of the Office of Minority Health has been decreased in 
the last several years. In fiscal year 2004, OMH received $55 million; 
in fiscal year 2005, OMH received $50 million; and the proposed budget 
in fiscal year 2006 is $47 million. APHA is concerned that at a time 
when we have increasing evidence of disparities in health care 
delivery, access and health outcomes, the budget of OMH is getting cut. 
We support restoring OMH funding to the fiscal year 2004 level.

                               CONCLUSION

    In closing, we emphasize that the public health system requires 
financial investments at every stage. Successes in biomedical research 
must be translated into tangible prevention opportunities, screening 
programs, lifestyle and behavior changes, and other interventions that 
are effective and available for everyone. While we have said this 
before, in the post-September 11th era, we need to apply this to our 
spending growth in terrorism preparedness as well. We must think in a 
broad and balanced way, leveraging homeland security programs and 
funding whenever possible to provide public health benefits as a matter 
of routine, rather than emergency.
    We thank the subcommittee for the opportunity to present our views 
on the fiscal year 2006 appropriations for public health service 
programs.
                                 ______
                                 
  Prepared Statement of the Association of Maternal and Child Health 
                                Programs

    Mr. Chairman and members of the subcommittee, I am pleased to 
submit testimony on behalf of the Association of Maternal and Child 
Health Programs (AMCHP) regarding the critical need for funding of the 
Title V Maternal and Child Health Services Block Grant in fiscal year 
2006. As AMCHP's President and the director of Iowa's Child Health 
Specialty Clinics program, which uses MCH block grant funds to serve 
Iowa's children and their families, I know these funds make a 
difference. Because of the MCH Block Grant, states are able to fund a 
variety of activities to improve the health of your constituents. I 
urge you to provide $755 million for the MCH Block Grant this year.
    AMCHP is a national non-profit organization representing the 
leaders of state public health programs for maternal and child health, 
and children with special health care needs in all 50 states, the 
District of Columbia, and eight additional jurisdictions. Every state 
health department receives Title V Maternal and Child Health Services 
Block Grant funds to improve the health of all mothers and children.
    This modest increase to $755 million (3 percent) is necessary to 
help states maintain current levels of service. Between 1999 and 2003, 
the number of women and children served by this program increased by 
almost 4 million (16 percent). Federal funding has declined since 2003. 
The President's request of $723.9 million for fiscal year 2006 would be 
the fourth straight year of level or reduced funding. States are being 
called to do more with less and state MCH programs have done their best 
to make sure that the women and children we served are not adversely 
affected. However, maternal and child health programs in every state 
have reached a breaking point, with many states experiencing reductions 
in both state and federal funding; without additional funds, more 
severe cuts may have to be made.
    I also urge you to reject the Administration's proposal to 
eliminate funding for HRSA's Emergency Medical Services for Children 
program, Universal Newborn Hearing Screening program, trauma program 
and CDC's preventive health and health services block grant. The budget 
request argues that states will be able to use their MCH Block Grant 
funds to support some of these activities. States already work with 
these programs to avoid duplication and to ensure that each federal 
dollar, whether obtained through the block grant or not, goes further. 
The reality is that states have less federal and state funds available 
for maternal and child health programs and would not be able to support 
the current activities without cutting funds for other health 
priorities. Eliminating Newborn Hearing Screening grants will force 
states to cut other worthy MCH programs in order to continue hearing 
screening or to scale back or not conduct newborn hearing screening 
activities. According to a recent report, thanks to the HRSA funding, 
over 86 percent of infants born in hospitals nationwide are screened 
for hearing loss, up from 25 percent in 1999. Additionally, continued 
funding ($5 million) within the Special Projects of Regional and 
National Significance (SPRANS) set-aside for MCH oral health activities 
is critical. Most state dental programs for children are part of the 
state's maternal and child health program and are supported through the 
Maternal and Child Health block grant and support ongoing leadership to 
states to address long-term oral health problems.
    The Title V Maternal and Child Health Block Grant is one of the 
nation's oldest health programs and plays a pivotal part in states' 
current maternal and child health policy. The authorization of funding 
for the Maternal and Child Health Block Grant goes back to the Social 
Security Act of 1935. The legislation represented one of the very first 
state ``grant-in-aid'' programs, allocating federal revenues to states 
that agreed to meet the program's basic conditions of participation, 
which revolved around two main goals. The first was to help states 
lessen the negative social and public health impact of the Great 
Depression through promotion of maternal and child health services and 
the development of a basic preventive and primary health care 
infrastructure for women and children. The second, and one directly 
tied to the terrible epidemic of polio, was to assist states through 
grants to develop services for ``crippled children.''
    Today, Maternal and child health programs have expanded their roles 
and lead state efforts to increase immunization and newborn screening 
rates, reduce infant mortality, prevent childhood accidents and 
injuries, and reduce adolescent pregnancy. Each year, more than 27 
million women, infants, children and adolescents, including those with 
special health care needs, are served by MCH Block Grant funds. Half of 
the 4 million women who give birth annually receive health services 
made possible by the MCH Block Grant.
    While the block grant now represents a much smaller funding stream 
for states, it still remains one of the few resources that gives 
states' the ability to provide numerous services to meet needs 
identified by the states, to millions of women, children, and their 
families annually. And in every state, the MCH Block Grant still 
provides a health safety net for low-income women and children, by 
being a payor of last resort for needed medical services when other 
sources of payment (either public or private) are not available.

    WHO DO WE SERVE? WHAT DOES THE TYPICAL TITLE V CLIENT LOOK LIKE?

    Every year, over 4 million babies are born in this country. Many of 
them are healthy and families leave the hospital confident of a better 
future. I can discuss the many ways that MCH Block Grant dollars and 
state programs help in producing those healthy outcomes. However, I 
want to focus on the case of those families with children who may have 
special health care needs present at birth or shortly afterwards. Like 
the parent from Massachusetts with a son who was eventually diagnosed 
with congenital heart disease, abnormal heart rhythms, and is now 
pacemaker dependent. Immediately after birth, the parent made countless 
visits to the pediatrician sensing that something seemed wrong with her 
son, but she didn't know what. He was jaundiced for weeks after he was 
born and didn't gain weight, as he should. Even on formula, her son 
still did not gain weight. In a span of two calendar years, her son was 
hospitalized for 134 consecutive days. For all the ``I feel for you'' 
visits she had from hospital social workers, no one ever told her son 
was eligible for SSI after the first 30 consecutive calendar days as an 
inpatient, or that her family could apply for Massachusetts Medicaid 
buy-in option to offset their exorbitant out-of-pocket costs for the 
healthcare services her son was receiving. This parent, like many 
others, continued to have great difficulty in coordinating health care 
services. She had to make thousands of phone calls to state agencies 
and search the Internet, plead with her insurance company to pay for 
things, call state agencies, surf the Internet late into the night 
looking for support services, for other parents, or for anything that 
would help.
    Another family in Pennsylvania juggle 11 doctors who treat their 
son with special health care needs and who constantly struggle to 
navigate the health care system for as many options that are available 
to improve the quality of life for their son. These are just a few 
examples of what is unfortunately a very common occurrence throughout 
the country.
    MCH Block Grant funds help assure that every state has the ability 
to connect families like the one described above to services and when 
those services are not otherwise available, to pay for that care. In 
Missouri, a child was born with an infection similar to a form of 
meningitis and was in the NICU for the first 8 weeks of his life. 
Within a day after mother and child went home, a nurse from the Bureau 
of Special Health Care Needs contacted the family. The support from the 
state's children with special health care needs program did not stop 
but continued and even now 16 years later, is available when the family 
needs it. Anything from adaptive equipment, to personal care attendant 
services have been provided when necessary.
    State Maternal and Child Health Programs play a primary role in 
assuring health care for children with special health care needs and 
their families. The services that each state provides may vary but by 
law, 30 percent of each state's Maternal and Child Health Block Grant 
allocation must be used to provide services for these kids. Why? 
Because the experiences for families that I outlined above have 
occurred too often. Since 1935, Congress has provided funding to states 
to make sure that we put an end to stories like these. A recent 
national survey by the Maternal and Child Health Programs estimated 13 
percent of children in the United States have a special health care 
need. Maternal and Child Health Block Grant funded programs are 
reaching slightly over 1 million but more can be done with increased 
funding for this important program.
    In Iowa, Child Health Specialty Clinics is the designated Title V 
Children with Special Health Care Needs program. We operate a statewide 
program that works with families, service providers and communities to 
provide subspecialty health care and support to children, from birth 
through age 21, who have a chronic condition (physical, developmental, 
behavioral or emotional) or who have an increased risk of a chronic 
condition and need special services. Like similar programs in all 
states, the program is primarily funded through the Maternal and Child 
Health Block Grant. Each specialty clinic center can offer from one to 
four evaluation and planning clinics per month. These clinics are 
staffed by community pediatricians, nurses, and nutritionists and serve 
mostly children with behavioral and developmental problems. Clinics 
serve children with chronic health problems like heart disease, 
diabetes, sickle cell disease, and bone and joint disease. Fees for the 
clinics are based on a sliding scale that accounts for family size and 
income.
    Besides the clinics, Iowa uses MCH block grant funds to provide 
other services for children and their families including making sure 
family support is available and organizing care plans for children. 
Through a statewide parent-to-parent network, we provide one-on-one 
emotional support, problem-solving assistance and help with 
understanding health insurance to families. The network connects 
parents new to the program with parents who have already been through 
many of the same experiences When one child can have as many as 11 
doctors, the burden on families to navigate the health care maze can be 
crushing. Another way we help is helping families navigate the health 
care system. Some children with complicated health problems require 
different services from varied agencies and we help coordinate needed 
care with local agencies within the family's community. These are 
provided as free services to families.
    Child Health Specialty Clinics serve approximately 9,000 children 
yearly, including 800 infants and 1,500 preschoolers, including making 
phone, mail and face-to-face contacts with families and health care 
providers. A few years ago I had 14 of these centers throughout Iowa. 
Today, we have 13 centers and in most other locations are now open only 
four days a week. Funding reductions at the state and federal level 
mean less clinics, families have to travel farther, and no ability to 
address emerging needs such as care for children with special emotional 
and behavioral health needs, one of the largest needs that we are 
currently seeing in the state.

                           STATE BUDGET CUTS

    More MCH Block Grant funds are needed. Below are specific examples 
of reductions in services that states have made due to declining 
federal and state funding for maternal and child health.

                                  IOWA

    Because of decreased state and federal funding along with increases 
in personnel costs (inflation), Iowa closed pediatric mobile clinics, 
eliminated nutrition services for children, closed the Waterloo center 
and reduced services at other centers. Without increased funding, we 
are looking at:
  --Closing centers in Burlington, Council Bluffs, Sioux City
  --Consolidating the Dubuque and Davenport with other centers
  --Increased waiting time up to 12 months for families and their kids 
        to get the services they need
  --Ending behavioral pilot programs, a medical home project and other 
        activities to make sure these children and their families get 
        the right services when they need them.

                                  OHIO

    Ohio received one of the steepest cuts in federal MCH block grant 
funding, losing $1.5 million (or 6 percent) between fiscal year 2003 
and fiscal year 2004. Combined with a $7.5 million decline in the state 
funds available to support MCH, the ability for the program to maintain 
services to the 266,000 women, infants, and children who received 
services in 2002 has been severely compromised. Ohio's Children with 
Special Health Care Needs (CSHCN) program, because of both state cuts 
and cuts in the Ohio MCH Block Grant, has had to decrease the number of 
diagnoses covered by the CSHCN Treatment Program and to change the 
eligibility rules to reduce the services provided. Three diagnosed 
conditions were eliminated from coverage, affecting almost 600 
children.
    Other changes may affect up to 5,000 children who rely on the 
program. Co-payments are increased for families. Raising co-payments 
can significantly impact the financial and physical health of these 
families and their children if they are unable to pay them. These 
families turn to Title V when insurance (either private or public) 
cannot provide the services. The Ohio Specialty Field Clinic Program 
received a 20 percent decrease in MCH block grant and other funding 
support. The Specialty Clinic Program provides access to pediatric 
specialists for children in Ohio. The number of clinics will be cut, 
all in rural Ohio where the greatest need for services exists. This 
will affect the access to care for 300 children in Ohio's rural areas. 
Cardiac Specialty Clinics will be closed as of July 1, 2004. Funding 
reductions also slow the ability to respond to emerging issues, such as 
an increase in Ohio's infant mortality rate, which rose from 7.5 per 
1,000 births in 2000 to 7.9 in 2002.

                                 TEXAS

    Texas received a reduction of $753,000 (3 percent) in federal MCH 
funds. That reduction along with a reduction in state funds for MCH in 
2004-2005 will drastically increase the unmet needs of the MCH 
population in Texas. Currently, the MCH program addresses less than 10 
percent of the MCH population-in-need. For example, Title V MCH fiscal 
year 2004 contracts for services (i.e., initiatives directed toward 
teen pregnancy, childhood obesity, immunization, etc) decreased by 33 
percent and by 13 percent for direct services (prenatal care, child 
well-check visits, dental, family planning, etc.). In 2001, the Texas 
Children with Special Health Care Needs program instituted a waiting 
list that has grown to 1,200 families and is expected to continue to 
increase.

                               CONCLUSION

    Since its creation, the Title V Maternal and Child Health Block 
Grant has grown from a $2.7 million program in fiscal year 1936 to a 
$723.9 million program in fiscal year 2005, and despite its relatively 
modest size, it has been revisited by Congress repeatedly over the 
years as new maternal and child health related concerns become evident. 
Even with the enactment of Medicaid in 1965, the Early and Periodic 
Screening, Diagnostic, and Treatment (EPSDT) program in 1967 (which 
simultaneously amended Medicaid and Title V to increase support for 
primary care) and SCHIP in 1997, Title V continues as a source of 
flexible funding that allows states to invest in the child health 
``infrastructure'' for both basic and specialty care. Increased funding 
is crucial to helping state MCH programs navigate the changing maternal 
and child health world. Please provide $755 million for the Maternal 
and Child Health Block Grant in fiscal year 2006. Again, thank you for 
this opportunity to testify.
                                 ______
                                 
Prepared Statement of the Association of Women's Health, Obstetric and 
                            Neonatal Nurses

    The Association of Women's Health, Obstetric and Neonatal Nurses 
(AWHONN) appreciates the opportunity to comment on the fiscal year 2006 
appropriations for nursing education, research, and workforce programs 
as well as programs designed to improve maternal and child health. 
AWHONN is a membership organization of 22,000 nurses whose mission is 
to promote the health of women and newborns. AWHONN members are 
registered nurses, nurse practitioners, certified nurse-midwives, and 
clinical nurse specialists who work in hospitals, physicians' offices, 
universities, and community clinics across North America as well as in 
the Armed Forces around the world.
    AWHONN appreciates the support that this Subcommittee has provided 
for nursing education, research and workforce programs as well as 
maternal and child health programs in the past. We realize that there 
are many competing priorities for the Subcommittee members, and we 
appreciate your consistent support.

                        GROWING NURSING SHORTAGE

    AWHONN supports the advancement of quality care through an adequate 
nurse workforce Data from the Bureau of Health Professions, Division of 
Nursing's National Sample Survey of Registered Nurses--February 2002, 
confirm that of the approximately 2.7 million registered nurses in the 
nation, only about 82 percent of these nurses were working full-time or 
part-time in nursing. In addition to the shrinking pipeline of nurses 
coming into the program, the dominant factor in this shortage is the 
impending retirement of up to 40 percent of the workforce by 2010 or 
soon thereafter. This will occur at the same time that the needs of the 
aging baby boomer population will markedly increase demand for health 
care services and the services of registered nurses.
    This critical demand is reinforced by the fact that in February 
2004, the U.S. Bureau of Labor released statistics detailing how 
registered nurses have the largest projected 10-year job growth in the 
United States, with about 1 million new job openings by 2010. In 
addition to the care provider shortage, nursing faculties are also 
decreasing in number, requiring universities to decline acceptance to 
qualified nursing school applicants. The Southern Regional Education 
Board states that with faculty vacancies and newly budgeted positions, 
there has been a 12 percent shortfall in the number of nurse educators 
needed to train nursing applicants. The entire nursing workforce needs 
strengthening. As a result, it will take long-term planning and 
innovative initiatives at the local, state and federal level to assure 
an adequate supply of a qualified nurse workforce for the nation.

                  NURSE WORKFORCE DEVELOPMENT PROGRAMS

AWHONN recommends a total of $210 million for fiscal year 2006 to fund 
        the Nurse Workforce Development programs in Title VIII
    The Nurse Education Act (Public Health Service Act, Title VIII), 
enacted in 1964, represents the only comprehensive federal legislation 
to provide funds for nursing education. The programs authorized in this 
portion of Public Law 105-392 help schools of nursing and nursing 
students prepare to meet patient needs in a changing health care 
delivery system, favoring programs in institutions that train nurses 
for practice in medically underserved communities and Health 
Professional Shortage Areas.
    Reauthorized as the Nursing Workforce Development section in 1998, 
the new NEA gives the Department of Health and Human Services more 
discretion over the focus of federal spending. In 2002, Congress 
enacted the Nurse Reinvestment Act, which provides funding for new and 
expanded programs. These programs include scholarships, career ladders, 
internships and residencies, retention programs, and faculty loans 
designed to encourage students to consider nursing, keep nurses in the 
field, and ensure that nurse educators are plentiful enough to educate 
future nurses that we desperately need. The new programs received an 
initial appropriation of $20 million in fiscal year 2003, which was in 
addition to $93 million in funding provided for existing Title VIII 
programming. Unfortunately, due to limited funding in the first 2 years 
of the new authorization, the loan and scholarship programs have not 
been successful in providing support to students in nursing schools. In 
the first year, only 574 loan repayment contracts were made nationally, 
averaging roughly 11 loan repayment agreements per state, and less than 
2 percent of all scholarship applicants were funded.
    The shortage of registered nurses and the effect of the shortage on 
nurse staffing and patient safety demand a significant increase in 
funding for these programs. Nursing is the largest health profession 
with over 2.7 million nurses, yet only one-fifth of 1 percent of 
federal health funding is directed to nursing education. A significant 
increase in funding for these programs would lay the groundwork to 
expand the nursing workforce, through education and clinical training 
and retention programs, in order to address some of the serious 
shortage issues.
    The nursing shortage is not confined solely to care providers; 
there is also a growing, significant shortage of nurse faculty. The 
American Association of Colleges of Nursing (AACN) reports that the 
average age of nursing professors is 52, and for associate professors 
the average age is 55. The impending retirement of these seasoned 
educators will impact the ability of our schools and universities to 
meet the educational health care needs of the nation. According to 
AACN, U.S. nursing schools turned away almost 16,000 qualified 
applicants to baccalaureate nursing programs in 2003 due to 
insufficient faculty, clinical sites, classroom space, and budget 
constraints. Additionally, 125,000 qualified applicants were turned 
away from nursing programs at all levels across the United States in 
2004 according to the National League for Nursing.
    While the capacity to implement faculty development is currently 
available through Section 811 and Section 831, adequate funding and 
direction is needed to ensure that these programs are fully 
operational. Options to provide support for full-time doctoral study 
are essential to rapidly prepare the nurse educators of the future. 
AWHONN recommends that a portion of the funds be allocated for faculty 
development and mentoring.
    Further, AWHONN recognizes the importance of appropriate 
investments in advanced practice nursing programs. As in other 
professions the advanced degree has become a necessary achievement for 
career advancement, and registered nurses who pursue the MSN degree are 
a part of the cadre of nurses who go on to become faculty. Our nation 
needs more nurses with basic training to enter the field, but focusing 
only on these nurses addresses just half of the problem. The nursing 
shortage encompasses nursing faculty; both advanced practice nursing 
and basic nursing must receive additional funding but not one at the 
expense of the other.

                    MATERNAL AND CHILD HEALTH BUREAU

AWHONN recommends $850 million in funding in fiscal year 2006 for the 
        Maternal and Child Health Bureau
    This program provides comprehensive, preventive care for mothers 
and young children, as well as an array of coordinated services for 
children with special needs. In fact, the Maternal Child Health Block 
Grant (MCH) serves over 80 percent of all infants in the United States, 
half of all pregnant women, and 20 percent of all children.
    MCH programs are facing increased demands for services due to 
continued growth in the Children's Health Insurance Program, which in 
turn identifies more children who are eligible for other MCH Services. 
Title V complements Medicaid and the State Children's Health Insurance 
Program by providing ``wrap-around'' services and enhanced access to 
care in underserved areas. Additional funding would give states the 
resources they need to expand prenatal and infancy home visitation 
programs, an approach that has been shown, in NINR research, to improve 
the prenatal health-related behavior of women and reduce rates of child 
abuse and neglect as well as maternal welfare dependence.

                         INDIAN HEALTH SERVICE

AWHONN recommends an fiscal year 2006 appropriation of $5.54 billion 
        for IHS
    The Indian Health Service (IHS) is the principal federal health 
care provider and health advocate for Indian people with the goal of 
``ensur[ing] that comprehensive, culturally acceptable personal and 
public health services are available and accessible to all American 
Indian and Alaska Native people.'' IHS is tasked with an enormous 
responsibility in providing care to over half of the American Indian 
population.
    The American Indian and Alaska Native people have long experienced 
lower health status when compared with other Americans. Lower life 
expectancy and the disproportionate disease burden exist perhaps 
because of inadequate education, poverty, discrimination in the 
delivery of health services, and cultural differences. These are broad 
quality of life issues rooted in economic adversity and poor social 
conditions.
    A recent study of federal health care spending per capita found 
that the United States spends $3,803 per year per federal prisoner, 
while spending about half that amount for a Native American: $1,914. 
Per capita health care spending for the U.S. general population is 
$5,065 per year. A significant increase in funding over fiscal year 
2005 spending levels is necessary for the federal government to fulfill 
its responsibility to Indian Country and achieve its stated goals.
    While the nursing shortage continues nationwide, IHS has been 
disproportionately affected by the lack of RNs. IHS nurses are older, 
with an average age of 48, and nearly 80 percent of RNs are over the 
age of 40. Further, the average vacancy rate for RNs is 14 percent. IHS 
administers three interrelated scholarship programs designed to meet 
the health professional staffing needs of IHS and other health programs 
serving Indian people. These programs are severely under-funded. 
Targeted resources need to be invested in the IHS health professions 
programs in order to recruit and retain registered nurses in Indian 
Country.
    Additionally, Section 112 of the Indian Health Care Improvement 
Act, Public Law 94-437, authorizes grants to public or private schools 
of nursing, tribally-controlled community colleges and tribally-
controlled post secondary vocational institutions for the purpose of 
recruiting, training and increasing the number of professional nurses 
who deliver health care services to Indian people. On average, Section 
112 programs provide five undergraduate scholarships per year and two 
master's program scholarships. This important program should be 
expanded to provide many more scholarships, both at the undergraduate 
and graduate levels, in an effort to offer meaningful relief to the 
nursing shortage for IHS healthcare providers and the patients they 
serve.

             NATIONAL INSTITUTE OF NURSING RESEARCH (NINR)

AWHONN recommends an increase of $22 million over fiscal year 2005 
        funding levels for the NINR, resulting in an fiscal year 2006 
        appropriation of $160 million
    NINR engages in significant research affecting areas such as health 
disparities in ethnic groups, training opportunities for management of 
patient care and recovery, and telehealth interventions in rural/
underserved populations. This research allows us to refine the practice 
and provide quality patient care in its current challenging 
environment.
    NINR research contributes to or results in improved health outcomes 
for women. Recent public awareness campaigns target differences in the 
manifestation of cardiovascular disease between men and women. The 
differing symptoms are the source of many missed diagnostic 
opportunities among women suffering from the disease, which is the 
primary killer of American women. In a study funded by NINR, 
researchers were able to qualitatively analyze the intensity of pain 
and limitation of activity experienced by women suffering from angina, 
both of which were found to be of greater intensity than that 
experienced by men. The study concluded that the gender variation could 
significantly impact diagnosis and treatment of female patients 
suffering from related cardiovascular problems.
    Because of the emphasis on biomedical research in this country, 
there are few sources of funds for high-quality behavioral research for 
nursing other than NINR. It is critical that we increase funding in 
this area in an effort to optimize patient outcomes and decrease the 
need for extended hospitalization.

    NATIONAL INSTITUTE OF CHILD HEALTH AND HUMAN DEVELOPMENT (NICHD)

AWHONN supports an increase in funding for NICHD for fiscal year 2006, 
        bringing the appropriation to $1.35 billion
    NICHD seeks to ensure that every baby is born healthy, that women 
suffer no adverse consequences from pregnancy, and that all children 
have the opportunity for a healthy and productive life unhampered by 
disease or disability. With increased funding, NICHD could expand its 
use of the NICHD Maternal-Fetal Medicine Network to study ways to 
reduce the incidence of low birth weight. Prematurity/low birthweight 
is the second leading cause of infant mortality in the United States 
and the leading cause of death among African American infants. AWHONN, 
like many organizations directly involved in programs to improve the 
health of women and newborns, looks to NICHD to provide national 
initiatives, such as the Maternal-Fetal Medicine Network that assists 
with the care of pregnant women and babies.
    Recently NICHD released research indicating they may have found a 
test to predict preeclampsia in patients before the life-threatening 
complication, affecting five percent of all pregnancies, occurs. 
Abnormal levels of placental growth factor (PlGF) were found in the 
urine of pregnant women who later developed preeclapmsia. Once NICHD 
screens for women who are high risk for developing preeclampsia, this 
group can be studied to prevent or cure this complication. This finding 
is a promising lead in the effort to prevent and cure preeclampsia.

      NATIONAL INSTITUTES OF ENVIRONMENTAL HEALTH SCIENCES (NIEHS)

AWHONN supports an increase in funding for NIEHS for fiscal year 2006, 
        bringing the appropriation to $680 million
    Research conducted by the NIEHS plays a critical role in what we 
know about the relationship between our environmental exposures and 
disease onset. Through the research sponsored by this Institute, we 
know that Parkinson's disease, breast cancer, birth defects, 
miscarriage, delayed or diminished cognitive function, infertility, 
asthma and many other diseases and ailments have confirmed 
environmental triggers. Our expanded knowledge, as a result, allows 
both policy makers and the general public to make important decisions 
about how to reduce toxin exposure and reduce the risk of disease and 
other negative health outcomes.
    One impressive collaborative research project spearheaded by the 
NIEHS is the recent partnering of public and private funding agencies 
that will examine how better community design encourages people to be 
more physically active in their daily lives. Researchers will identify 
how our built environment contributes to obesity and how environmental 
changes can combat a growing public health problem. The NIEHS will 
examine the program's impact on physical activity, obesity, and other 
health indicators.

            CENTERS FOR DISEASE CONTROL AND PREVENTION (CDC)

AWHONN recommends an fiscal year 2006 appropriation of $8.65 billion 
        for the CDC
    For nearly 60 years, the Centers for Disease Control and Prevention 
(CDC) has evolved to assume responsibility for programs in infectious 
disease surveillance, control and prevention, injury control, health in 
the workplace, prevention of heart disease, cancer, stroke, obesity and 
other chronic diseases, improvements in nutrition and immunization, 
environmental effects on health, prevention of birth defects, 
laboratory analyses, outbreak investigation and epidemiology training, 
and data collection and analysis on a host of vital statistics and 
other health indicators. Now more than ever, CDC's role in protecting 
the nation's health through prevention has become evident as we address 
issues of terrorism, emergency preparedness and health system capacity 
and infrastructure. Increased funding for CDC is critical.
            Birth Defects
    For over 30 years, CDC has been deeply involved in the prevention 
of birth defects through programs like the Folic Acid Education 
Campaign and the new National Center on Birth Defects and Developmental 
Disabilities (NCBDDD). The public health impact of birth defects is 
tremendous. Of the four million babies born each year in the United 
States, approximately 120,000 are born with a serious birth defect. 
According to CDC, the lifetime costs of caring for infants born in 
1992, with at least one birth defect \1\ or cerebral palsy was about $8 
billion. The emotional and financial burden for the families with 
affected children is devastating. CDC funds several programs critical 
to reducing the number of children born with birth defects, including 
funding to states for birth defects tracking systems. Due to lack of 
funds, CDC is only able to fund 15 states in fiscal year 2005, which is 
down from 28 states in fiscal year 2004. Additional funding for these 
grants is needed to fund all of the states seeking CDC assistance for 
these critical surveillance programs.
---------------------------------------------------------------------------
    \1\ These birth defects include: Spina bifida, truncus arteriosus, 
single ventricle, transposition/double outlet right ventricle, 
Tetralogy of Fallot, tracheo-esophageal fistula, colorectal atresia, 
cleft lip or palate, atresia/stenosis of small intestine, renal 
agenesis, urinary obstruction, lower-limb reduction, upper-limb 
reduction, omphalocele, gastroschisis, Down syndrome, and diaphragmatic 
hernia.
---------------------------------------------------------------------------
            Cardiovascular Disease
    Cardiovascular disease is the leading cause of death in the United 
States, causing one death every 34 seconds and $393.5 billion a year in 
direct and indirect healthcare costs, according to the American Heart 
Association. The CDC reports that almost one-fourth of the U.S. 
population has some form of cardiovascular disease. Additionally, 65 
percent of American adults are overweight or obese and nearly 16 
percent of children and adolescents are overweight. Obesity is 
considered a major public health problem because it serves as the 
gateway disease for many other illnesses including but not limited to: 
depression, type 2 diabetes, hypertension, stroke, and poor female 
reproductive health and pregnancy complications.
    These are but two examples of illnesses with programmatic public 
health funding through CDC. Any cuts to these programs will potentially 
leave millions of Americans without primary prevention programs that 
ultimately save lives and money. AWHONN urges $8.65 billion in funding 
for CDC chronic disease prevention and health promotion programs to 
ensure that these programs have the resources necessary to translate 
preventive health research into practice. This investment will save 
lives and billions in health care costs and productivity.

                        SUMMARY RECOMMENDATIONS

    A summary of AWHONN formal funding recommendations for these and 
other federal health programs:

----------------------------------------------------------------------------------------------------------------
                                                                               President's
                   Programmatic area                     Final fiscal year    budget fiscal     AWHONN's request
                                                              2005 \1\          year 2006
----------------------------------------------------------------------------------------------------------------
Nurse Workforce Development Programs...................       $151,889,000       $150,000,000       $210,000,000
Maternal & Child Health Block Grant....................        729,817,000        724,000,000        850,000,000
Indian Health Service..................................      2,985,000,000      3,048,000,000      5,540,000,000
Title X--Family Planning...............................        288,283,000        286,000,000        350,000,000
Newborn Hearing Screening..............................          9,872,000  .................         13,000,000
AHRQ...................................................        319,000,000        319,000,000        440,000,000
NIH....................................................     28,649,000,000     28,845,000,000     30,368,000,000
NINR...................................................        138,000,000        139,000,000        160,000,000
NICHD..................................................      1,271,000,000      1,278,000,000      1,350,000,000
NIEHS..................................................        645,000,000        648,000,000        680,000,000
CDC....................................................      4,572,000,000      4,017,000,000      8,650,000,000
----------------------------------------------------------------------------------------------------------------
\1\ Fiscal year 2005 numbers taken from conference report on omnibus bill do not reflect a further .8% across-
  the-board rescission.

    Thank you for the opportunity to submit testimony on these critical 
areas of funding.
                                 ______
                                 
    Prepared Statement of the Blue Cross and Blue Shield Association

    The Blue Cross and Blue Shield Association (BCBSA), which 
represents 40 independent, locally operated Blue Cross and Blue Shield 
Plans throughout the nation, is pleased to submit written testimony to 
the subcommittee on fiscal year 2006 funding for Medicare contractors.
    Blue Cross and Blue Shield Plans play a leading role in 
administering the Medicare program. Many Plans contract with the 
federal government to run much of the daily work of paying Medicare 
claims accurately and timely. Blue Cross and Blue Shield Plans serve as 
Part A Fiscal Intermediaries (FIs) and/or Part B carriers and 
collectively process most Medicare claims.
    This testimony focuses on three areas:
    Background, including a description of Medicare contractor 
functions;
    Current financial challenges facing Medicare contractors; and
    BCBSA recommendations for Medicare contractor fiscal year 2006 
funding.

                               BACKGROUND

    Blue Cross and Blue Shield Medicare contractors are proud of their 
role as Medicare administrators. While workloads have soared, operating 
costs--on a unit cost basis--have declined about two-thirds from 1975 
to 2005. In fact, contractors' administrative costs represent less than 
1 percent of total Medicare benefits.
    Medicare contractors have four major areas of responsibility:
    1. Paying Claims.--Medicare contractors process all the bills for 
the traditional Medicare fee-for-service program. In fiscal year 2006, 
it is estimated that contractors will process over 1.1 billion claims, 
nearly 4 million every working day.
    2. Providing Beneficiary and Provider Customer Services.--
Contractors are the main points of routine contact with Medicare for 
both beneficiaries and providers. Contractors educate beneficiaries and 
providers about Medicare and respond to over 50 million inquiries 
annually.
    3. Handling Hearings and Appeals.--Beneficiaries and providers are 
entitled by law to appeal the initial payment determination made by 
carriers and FIs. These contractors handle nearly 8 million annual 
hearings and appeals.
    4. Special Initiatives to Fight Medicare Fraud, Waste, and Abuse.--
All contractors have separate fraud and abuse departments dedicated to 
assuring that Medicare payments are made properly. Few government 
expenditures produce the documented, tangible savings of taxpayers' 
dollars generated by Medicare anti-fraud and abuse activities. For 
every $1 spent fighting fraud and abuse, Medicare contractors save the 
government $14.

                      CURRENT FINANCIAL CHALLENGES

    Of utmost importance to attaining outstanding performance is an 
adequate budget. Medicare contractors have been underfunded since the 
early 1990's, however, and the largest portion of the contractor 
budget--Medicare operations--faces particularly severe funding 
pressures. Medicare operations activities include claims processing, 
beneficiary and provider education and communications, hearings and 
appeals of claims initially denied, and systems maintenance and 
security.
    The underfunding of CMS and its Medicare contractors has gotten 
even more acute since the passage of the Health Insurance Portability 
and Accountability Act (HIPAA), the Benefits Improvement and Protection 
Act (BIPA), and the Medicare Modernization Act (MMA), which places new 
responsibilities on contractors, without sufficient resources to 
perform those duties. For example, between 1992 and 2002, Medicare 
benefits outlays increased 97 percent; claims volume increased 50 
percent; yet Medicare operations funding increased a mere 26 percent. 
Contractor staffing only increased by 6 percent during this time even 
though many new responsibilities were added and claims volume continued 
to rise. Clearly funding has not kept pace with additional work. In 
addition, the Medicare reform legislation includes significant changes 
that will require additional resources on an ongoing basis for 
contractors to implement.
    Whenever possible, contractors respond to reduced funding by 
achieving significant efficiencies in claims processing, but it is not 
enough to keep pace with rising Medicare claims volume and diminishing 
funding levels. It should be noted that contractors are already 
extremely efficient. Currently, contractors' administrative costs 
represent less than 1 percent of total Medicare benefits.
    Inadequate budgets for Medicare operations also impact Medicare's 
fight against fraud and abuse. While many think of Medicare operations 
activities as simply paying claims, these activities are Medicare's 
first line of defense against fraud and abuse and are critically linked 
to activities under the separately-funded Medicare Integrity Program 
(MIP). As an example, many of the front-end computer edits (e.g., 
preventing duplicate payments and detecting inaccurately coded claims 
or claims requiring additional screening) are funded through Medicare 
operations.
    Inadequate funding impacts different functions at different times, 
but always disrupts the integration of all the functional components 
needed to ``get things right the first time.'' It thus results in 
inefficiency and higher costs.
bcbsa fiscal year 2006 funding recommendations for medicare contractors
    BCBSA is pleased that many Members of this subcommittee recognize 
the need for adequate administrative resources at CMS. We are concerned 
the Administration's fiscal year 2006 budget would significantly cut 
Medicare operations funding by nearly $43 million. BCBSA urges Congress 
to take the following steps to allow Medicare contractors to meet 
increased workloads as well as beneficiary and provider needs:

A. Increase Medicare Contractor Operations Funding to $2,240 Million 
        for fiscal year 2006
    Medicare contractors continue to face increases in Medicare claims 
volume. Further reductions in administrative costs, as proposed in the 
President's budget, would seriously jeopardize contractors' ability to 
administer Medicare. BCBSA recommends:
    1. Claims processing funding must be maintained at $812 million 
($10 million more than President's budget).--The President's budget 
would decrease claims processing funding by $10 million under the 
assumption that beneficiary movement to Medicare Advantage plans will 
decrease contractor workloads, particularly in claims processing, 
appeals and inquiries. BCBSA disagrees with this assumption.
    While BCBSA recognizes a slight reduction in claims, appeals, and 
inquiries could occur, the amount is highly uncertain. In fact, data 
suggests claims volume will increase by 4 percent in fiscal year 2006. 
Congress must ensure funding is available should volume and costs be 
higher than anticipated. Otherwise, contractors will be faced with 
budget shortfalls that will result in reduced services for 
beneficiaries and providers.
    2. Appeals funding must be restored to $109 million ($12.5 million 
more than the President's budget).--The President's budget would 
decrease appeals funding by $25 million under the assumption that the 
new Qualified Independent Contractors (QICs) will take on certain 
appeals responsibilities, lessening the load for contractors. BCBSA 
disagrees with this assumption.
    Appeals workloads and costs are on the rise for several reasons. 
First, implementation of the QICs is behind schedule, requiring 
contractors to continue some of this work. Second, contractor 
interfaces with QICs require funding to prepare the case and transfer 
information. Third, CMS recently announced it will eliminate provider 
phone appeals, which cost $10 compared to $19 for written appeals, and 
require separate written notification of favorable determinations.
    3. Inquires funding must be increased to $232 million ($27 million 
more than the President's budget).--The President's budget would 
decrease inquiries funding by $17 million under the assumption that 
CMS' 1-800-MEDICARE call volume will continue to increase, diminishing 
work at the contractor site. BCBSA disagrees with this assumption.
    While Medicare contractor call volume may decrease, the complexity 
and length of the call is increasing significantly. CMS often refers 
complex beneficiary and provider inquiries to the Medicare contractor 
that originally processed the claim. Further, CMS implemented a new 
Provider Customer Service Program required by the Medicare 
Modernization Act, but did not account for its costs in the fiscal year 
2006 budget.

B. Increase Flexibility and Funding for the Medicare Integrity Program 
        (MIP)
    Congress created MIP in 1996 to provide a permanent, stable funding 
authority for the portion of the Medicare contractor budget that is 
explicitly designated as fraud and abuse detection activities. Despite 
the continued rise in claims, MIP funding has been capped at $720 
million since fiscal year 2003. In fact, claims volume increased by 
more than 16 percent (158 million claims) since MIP was last increased. 
Clearly, benefit integrity activities cannot keep pace with rising 
claims volumes without additional funding. BCBSA recommends Congress:
  --Authorize an automatic yearly increase in MIP consistent with the 
        rate of inflation and increase in claims volume;
  --Direct a portion ($20 million) of the new Part D oversight funding 
        toward MIP Part A and B activities; and
  --Urge CMS to give contractors greater flexibility to manage their 
        Medicare Integrity budgets.
    The following chart highlights BCBSA's request compared to fiscal 
year 2005 and the President's fiscal year 2006 request.

                                            [In millions of dollars]
----------------------------------------------------------------------------------------------------------------
                                                                                    President's
                                                                    Fiscal year     fiscal year    BCBSA fiscal
                   Medicare contractor budget                          2005            2006          year 2006
                                                                                  recommendation  recommendation
----------------------------------------------------------------------------------------------------------------
Medicare Operations.............................................           2,233           2,190           2,240
Medicare Integrity Program......................................             720             720             740
                                                                 -----------------------------------------------
      Total Contractor Budget...................................           2,953           2,910           2,980
----------------------------------------------------------------------------------------------------------------

                                 ______
                                 
     Prepared Statement of the Coalition of Northeastern Governors

    The Coalition of Northeastern Governors (CONEG) is pleased to 
provide this testimony for the record to the Senate Subcommittee on 
Labor, Health and Human Services, Education, and Related Agencies 
regarding fiscal year 2006 appropriations for the Low Income Home 
Energy Assistance Program (LIHEAP). The Governors appreciate the 
Subcommittee's consistent support for the LIHEAP program, and we 
recognize the difficult decisions facing the Subcommittee in this time 
of severe fiscal constraints. However, in light of sharply higher home 
energy prices, we request the Subcommittee provide $3.4 billion in 
regular fiscal year 2006 LIHEAP funding as well as the authority to 
release emergency contingency funds for unforeseen circumstances, such 
as price spikes in home heating fuels, severe weather and other 
potential emergencies.
    LIHEAP is a vital tool in making home energy more affordable for 
almost 5 million of the nation's very low-income households--the 
elderly and disabled on fixed incomes and families with young children. 
The percentage of income spent on total home energy by these low-income 
households can be four times higher than average households. For many 
of these households, annual income is simply not sufficient to pay high 
winter heating bills, even in periods of economic growth. Even after 
taking constructive actions to reduce their home energy use, too many 
low-income residents are forced to make dangerous choices between 
heating their homes, paying the full rent or mortgage, seeking medical 
attention, or purchasing food or vital medications.
    The substantial rise in home heating fuel prices hits these 
vulnerable citizens especially hard. The Northeast is heavily dependent 
on deliverable home heating fuels such as home heating oil, kerosene, 
and propane. In addition, price volatility in these fuels adversely 
affects the low-income households who, without the disposable income to 
purchase fuels off-season, typically enter the market when both the 
demand for and price of fuels are high.
    The Energy Information Administration predicts that the price of 
home heating oil, propane, and natural gas will continue to rise this 
year. Compared with 2001 to 2002, households can expect this winter to 
pay 55 percent more to heat a home with natural gas, 93 percent more 
for those heating with home heating oil, and 51 percent more for those 
heating with propane. However, within this same time period, the annual 
LIHEAP appropriation has increased modestly. In spite of the welcomed 
increase in LIHEAP funding, only a fraction--approximately 15 percent 
of eligible households--can be served at current LIHEAP funding. As a 
result, states across the country in recent years have seen significant 
increases in their regular LIHEAP caseloads, as well as in requests for 
emergency assistance from those households in imminent danger of a 
utility or fuel service cut-off. At current funding levels, states may 
be faced with the prospect of serving even fewer eligible households, 
reducing benefits, or curtailing the duration of the program. Clearly, 
the projected need far outweighs the available funding.
    Higher energy prices diminish the purchasing power of available 
LIHEAP funding assistance. In addition, without funds to carryforward 
to the new heating season, state LIHEAP programs lack the capability to 
undertake the ``pre-buy'' programs that help stabilize heating fuel 
prices for low-income households and expand the reach of limited 
program funds. An increased federal appropriation would allow states to 
manage the program resources in a manner to better take advantage of 
market opportunities.
    The current uncertainty of world energy markets underscores the 
importance of states being able to prepare for rising and potentially 
volatile energy prices. These preparedness activities, while critical, 
cannot fully shield our lowest-income citizens from the impacts of 
higher heating fuel prices. An increase in the regular LIHEAP 
appropriation to $3.4 billion in fiscal year 2006 will enable states 
across the nation to reach more of those vulnerable citizens in need of 
assistance and more fully implement cost-effective measures to meet 
their continuing energy needs.
    Your support for fiscal year 2006 LIHEAP appropriations at the $3.4 
billion level, as well as the authority to release emergency 
contingency funds for unforeseen circumstances, is urgently needed to 
enable our states to help mitigate the potential life-threatening 
emergencies and economic hardship that confront the nation's most 
vulnerable citizens.
    We thank the Subcommittee for this opportunity to share the views 
of the Coalition of Northeastern Governors, and we stand ready to 
provide you with any additional information on the importance of the 
Low Income Home Energy Assistance Program to the Northeast.
                                 ______
                                 
          Prepared Statement of the Community Medical Centers

    Mr. Chairman and Members of the Subcommittee: My name is Dr. Philip 
Hinton and I am the Chief Executive Officer of Community Medical 
Centers in Fresno, California. Community Medical Centers is a not-for-
profit, locally owned health care corporation that is committed to 
improving the health of the community. I am pleased to provide the 
subcommittee with a request for assistance in securing federal monies 
for a critical project in the Central San Joaquin Valley that would 
improve access to health care to the uninsured in Fresno County.
    The challenges and struggles facing our nation's public hospitals 
and health systems are ever-increasing. The nation's uninsured 
population continues to grow while there are significant reductions in 
state and federal government support. Hence, it is imperative for 
public hospitals to maximize their public funding sources while being 
proactive and creative in its strategies to deliver care to those who 
need it most.
    Community Medical Centers serves as the ``safety net'' provider for 
Fresno County. In its 1996 partnership with the County of Fresno, 
Community assumed the obligations of indigent care. In order to fulfill 
this obligation, last year Community provided over $90 million in 
uncompensated care. However, as Community looks to the future, it has 
determined the need for a more bold and aggressive strategy to meet the 
tremendous need for health care services in Fresno County.
    In its efforts to make health care available to the over 30 percent 
of the County's residents who are uninsured, Community has planned an 
Outpatient Care Center on the campus of the Regional Medical Center in 
downtown Fresno. This proposed facility will provide primary and 
specialty care including a children's clinic, a women's clinic focusing 
on prenatal, obstetrical and gynecological needs, asthma treatment and 
education, diabetes education and treatment, and surgical follow-up. 
This facility addresses the need for primary care services to the 
underinsured and uninsured population while attempting to reduce the 
number of unnecessary visits to local emergency departments. Although 
the overcrowding of emergency departments by the uninsured is a 
national problem, the Fresno area is particularly impacted with a 
larger percentage of uninsured.
    In addition to a high percentage of uninsured, the region boasts 
some equally sobering statistics:
  --An unemployment rate hovering at 15 percent
  --Over 25 percent of the residents living below the poverty line
  --The third highest asthma mortality rate in the nation
  --The highest rates of teen pregnancy in the state
  --Late or no prenatal care for pregnant women
    We believe that an Outpatient Care Center is critical to begin 
addressing these challenges, and we would like to ask for your 
assistance in securing $1 million towards the construction of this 
facility. We at Community Medical Centers are working diligently to 
secure significant private foundation monies for this facility as well. 
We understand that this request would require a special earmark under 
the Health Resources Services Administration account in the Labor/
Health and Human Services/Education appropriations bill. We know that 
funds are limited, but feel that this project merits funding. It is a 
project which will improve the quality of life in the Central San 
Joaquin Valley.
                                 ______
                                 
      Prepared Statement of the Council of State and Territorial 
                            Epidemiologists

    The Council of State and Territorial Epidemiologists (CSTE) is 
pleased to provide the Subcommittee with its fiscal year 2006 funding 
recommendations for nine priorities all of which are programs and 
activities administered by the Centers for Disease Control and 
Prevention.
    CSTE is a professional association with over 850 public health 
epidemiologists working in all 50 states as well as local and 
territorial health agencies to detect, prevent and control conditions 
that impact the public's health. CSTE members possess expertise in 
surveillance and epidemiology in a broad range of areas including 
communicable diseases, immunization, environmental health, chronic 
diseases, occupational health, injury control, maternal and child 
health and oral health.

 PUBLIC HEALTH WORKFORCE: INCREASING STATE AND LOCAL EPIDEMIOLOGY AND 
                          LABORATORY CAPACITY

  --$4 million increase for CDC's Office of Workforce and Career 
        Development in fiscal year 2006 to support 65 CDC/Council of 
        State and Territorial first year applied epidemiology fellows 
        at a cost of $60,000 per year;
  --$2 million in increased funding for CDC's National Center for 
        Infectious Diseases in fiscal year 2006 to support 35 CDC/
        Association of Public Health Laboratory applied research 
        training fellows.
    The disciplines of epidemiology and laboratory science are the 
pillars and backbone of public health practice. States and local 
communities have come to rely on well trained public health 
epidemiologists and laboratory scientists to investigate, monitor, and 
respond aggressively to public health threats. Every state's residents 
have become familiar with the ``disease detectives'' who they know will 
be in the lead for communicating risks and recommending preventive 
action for outbreaks of SARS, flu, West Nile virus, Monkeypox and 
epidemics of obesity, diabetes, HIV/AIDS and a host of other serious 
threats the public has experienced during recent years. These are the 
``go to'' professionals in every state. Yet, a new 2004 epidemiology 
capacity survey shows the number and the level of training of 
epidemiologists is perceived as seriously deficient in most states. 
Federal funding has increased the number of epidemiologists engaged in 
bioterrorism preparedness since 2002, but has done so at the expense of 
state environmental health, injury and occupational health activities--
shifting epidemiologists from these activities to federal bioterrorism 
preparedness priorities. Those engaged in chronic disease activities 
have increased since 2002, but are still viewed as too low in number 
and training and the number of epidemiologists engaged in infectious 
disease activities has stagnated.
    Efforts under the leadership of CDC have been made to begin 
addressing these gaps at both the federal and state level. In addition 
to expanded CDC Epidemic Intelligence Service and Career Epidemiology 
Field Officers for state and local health departments, CDC is 
supporting training fellowship programs for epidemiologists and 
laboratory scientists who are expected to increase state capacity and 
provide future leadership in these professions. CSTE applauds these 
efforts and proposes aggressive expansion of existing state-focused 
programs to increase the number of epidemiologists and public health 
laboratory scientists at state and local health departments. The 
proposed fiscal year 2006 increase will provide CSTE and APHL with the 
resources to accelerate much needed expansion of the state and local 
workforce in these critical disciplines to approximately 75 
epidemiologists and 75 laboratory scientists in training during fiscal 
year 2006.
    The overall benefits to the states and localities will be 
additional well trained epidemiologists and laboratory scientists 
entering employment through training programs that include the 
following characteristics:
  --national recruiting through a partnership between CSTE and the 
        Association of Schools of Public Health
  --orientation and training course with CDC and CSTE and APHL faculty
  --a ready-made applicant pool for state and local positions with 
        adequate time to evaluate job performance
  --a structured, individualized training curriculum for each fellow
  --technical and administrative support for fellows and state mentors
  public health infrastructure enhancement and terrorism preparedness
    CSTE supports $927 million, at a minimum, for CDC's State and Local 
preparedness grants to enhance capacity to prepare for and respond to 
terrorist attacks. The President's fiscal year 2006 request for CDC's 
State and local terrorism preparedness grants cuts funding by $130 
million and appears to shift this funding to National Stockpile 
activities, including a new $50 million Federal Mass Casualty 
Initiative. CSTE opposes this cut to on-going efforts to build strong 
state and local capacity which means, in many cases, eliminating 
personnel already hired. New federal initiatives, if they are deemed 
needed, should be funded from new resources.
    After decades of neglect of governmental public health systems, 
documented in numerous Institute of Medicine (IOM) reports, and Reports 
to Congress (The Future of the Public's Health in the 21st Century, 
IOM, 2003; Emerging Microbial Threats to Health in the 21st Century, 
IOM, 2003; Report to Congress, Public Health's Infrastructure: a Status 
Report, CDC, 2001; Emerging Infectious Diseases: Consensus on Needed 
Laboratory Capacity could Strengthen Surveillance, GAO, 1999), Congress 
and the Administration began a substantial effort to repair the damage 
following the events of 9/11 and the ensuing anthrax attacks. This 
effort to restore and enhance the system to protect the public against 
terrorist attacks, as well as naturally occurring disease threats, such 
as SARS, pandemic influenza, and West Nile virus, is beginning to have 
positive effect, but progress can only continue with sustained support.
    Reasons for maintaining funding levels in fiscal year 2006:
  --No single State, and no community in any State, has reached a full 
        level of national security preparedness to address the health 
        consequences of a terrorist event.
  --Few public health preparedness investments are one-time expenses. 
        State and local health departments have been strongly urged to 
        use preparedness funding to increase their personnel capacity 
        in epidemiology, laboratory science, communications and 
        logistics. Personnel are on-going expenses.
  --State and local health departments are in the third year of 
        expanded funding for terrorism preparedness. The effect of 
        reducing the amount of available funding by 14 percent will 
        seriously jeopardize their momentum in addressing critical 
        capacity needs.
  --The CDC cooperative agreement guidance listed several new 
        eligibility areas for State spending, including mental health, 
        chemical preparedness, and food security and newly expanded 
        guidance is expected for fiscal year 2005. In addition, States 
        are being asked to help administer several new federal programs 
        such as BioWatch, BioSense, ChemPack, additional smallpox 
        vaccination program activities, and consequence management for 
        postal facility Biohazard Detection Systems. This requires 
        spreading funding over increased areas of responsibility.
    Now is not the time to reduce our national commitment to State and 
local health departments. Building a strong public health 
infrastructure, particularly a trained public health workforce with 
sufficient epidemiologists and public health laboratory scientists, 
core public health professionals, will take a sustained commitment of 
resources over a long period of time, but will reap critical benefits 
in protected health.
cste supports $132 million for the phhs block grant in fiscal year 2006
    The Preventive Health and Health Services Block Grant, currently 
funded at $132 million, is proposed to be eliminated in the President's 
fiscal year 2006 budget. CSTE urges Congress not to cut this important 
prevention program for states, but maintain funding at the fiscal year 
2005 level. When this proposed cut is considered alongside the $130 
million cut in the state and local Bioterrorism grant program, the net 
result is to seriously undermine support for developing state public 
health capacity and activities, a strong Congressional goal leading up 
to and following the attacks of 9/11.
    The Block Grant was created to help states focus on achieving the 
health objectives identified in Healthy People 2010--a nationally 
conceived effort to set and achieve national health goals. To receive 
block grant funding, states must develop health plans, report to the 
federal government about their activities, and target public health 
interventions to populations in need. The flexibility of the grant 
allows each state to address their own unique challenges in exciting 
and innovative ways.
    Examples of this include a program in Idaho to prevent falls for 
older adults. Falls are the leading cause of injury death for Idaho 
adults age 65 and older, with hip fractures along costing the United 
States $20 billion annually. The Idaho program funds a curriculum and 
provides training to individuals who lead senior fall prevention 
exercise programs throughout the state. Another example is in Alabama 
where the Community Waterborne Disease Program, funded solely with PHHS 
Block Grant dollars protects 340,000 Alabamians who reside in rural 
areas against waterborne disease outbreaks from contaminated wells and 
septic tanks. Other Block Grant funds are used to combat newly emerging 
public health threats, such as West Nile virus, distribute smoke 
detectors, counter the growing epidemic of obesity and ensuing chronic 
diseases, improve cancer screening, conduct disease surveillance and 
infectious disease outbreaks, such as Hepatitis A and E.coli 0157:H7. 
While Block Grant funds sometimes complement existing categorical 
programs, they DO NOT DUPLICATE other CDC funded programs.

 CSTE SUPPORTS $250 MILLION FOR INFECTIOUS DISEASES CONTROL IN FISCAL 
                               YEAR 2006

    Infectious diseases are the leading cause of death worldwide, and 
the number of deaths from infectious diseases had been increasing in 
the recent past and remains substantial in the United States today. New 
challenges in the growth of resistance to commonly used antibiotics, 
emerging disease threats such as avian flu, SARS, the rapid spread of 
West Nile virus across the United States, and the rising number of food 
borne disease outbreaks, including increased monitoring of mad cow 
disease, make increased resources for infectious diseases control 
essential to the nation's health and well-being.
    CSTE's fiscal year 2006 recommendation for infectious diseases 
control is $25 million more than the fiscal year 2005 appropriation 
level of $225.5 million. CSTE urges that the additional $25 million in 
funding target the following critical areas:
  --Expand the Emerging Infections Program (EIP) from its current 
        funding level of about $20 million to allow more than the 
        current 11 States (CA, CO, CT, GA, MD, MA, NM, NY, OR, TN, TX) 
        to join this program that provides a population-based network 
        of surveillance for infectious diseases, applied epidemiologic 
        and laboratory research, as well as capacity for flexible 
        public health response.
  --Provide support for epidemiology fellowship programs to expand the 
        number of trained public health epidemiologists, particularly 
        at the State level, where shortages in these essential public 
        health professionals are severe.
  --Expand the Epidemiology and Laboratory Capacity (ELC) cooperative 
        agreement program which provides the 50 States, plus six large 
        local health departments (Chicago, Houston, Los Angeles, New 
        York City, Philadelphia, Washington, D.C.) and Puerto Rico, 
        with support to strengthen the collaboration between 
        epidemiologic and laboratory science at the State and local 
        level to meet the demands placed upon the country by emerging 
        and re-emerging infectious disease threats.
  --Ensure that funding for CDC's new initiative in global infectious 
        diseases supports the International Emerging Infections 
        Program, which is modeled on the U.S. EIP program.

 CSTE SUPPORTS $50 MILLION FOR CDC'S HEALTH TRACKING GRANT PROGRAM IN 
                            FISCAL YEAR 2006

    Researchers have linked specific diseases with exposures to some 
environmental hazards, such as the link between exposure to asbestos 
and lung cancer. Other links remain unproven, such as the suspected 
link between exposure to disinfectant by-products and bladder cancer. 
As the Pew Environmental Health Commission's report, ``America's 
Environmental Health Gap: Why the Country Needs A Nationwide Health 
Tracking Network'' noted, there is currently no national surveillance 
system to investigate the possible links between these environmental 
exposures and a number of diseases and conditions. Most states have 
little environmental health capacity. The Environmental Public Health 
Tracking Program is designed to increase state and local environmental 
health capacity by providing resources to conduct surveillance of 
health effects, exposures and hazards and their possible linkages.

Program Accomplishments
    Since fiscal year 2002, CDC has supported 20 state and local health 
departments to:
  --Build environmental health capacity
  --Increase collaboration between environmental and health agencies
  --Identify and evaluate existing data systems
  --Build partnerships with non-governmental organizations and 
        communities
  --Develop model systems that link data
    Additional funding would be used to:
  --Fund additional state health departments to increase their 
        environmental health capacity
  --Fund technical development activities to support a nationwide 
        network
  --Expand training and education activities
  --Expand collaboration with national partners to coordinate 
        technologic standards development efforts for the network
    Surveillance: Four Priorities--Behavioral Risk Factor Surveillance 
Survey (BRFSS).--Among the many important chronic disease programs 
within CDC's Center for Chronic Disease Prevention, Health Promotion, 
and Genomics which CSTE supports, a priority is the Behavioral Risk 
Factor Surveillance Survey (BRFSS). CSTE urges continued progress 
toward achieving a funding level of $18 million (+$10 million)--the 
base amount needed to fully implement the survey. CSTE is very pleased 
that Congress increased funding for the survey from $1.8 million where 
it had remained for many years, to $6.9 million in fiscal year 2003 and 
to $7.2 million in fiscal year 2004 and $7.6 million in fiscal year 
2005. The BRFSS is a primary source of information to guide 
intervention, policy decision, and budget direction at the local, state 
and federal level for a host of health problems, especially chronic 
diseases. It is the source of data for 24 of the 73 chronic disease 
indicators, six areas of the Healthy People 2010 leading health 
indicators and serves as the core source of surveillance for multiple 
public health programs across the CDC. The additional funding provided 
in fiscal year 2004 and fiscal year 2005 will significantly improve 
data collection infrastructure, timeliness, and analysis that will not 
only improve guidance for state-based public health activities, but 
allow state to state comparisons, state to national comparisons, and a 
more solid foundation for national resource and other decisions with 
regard to a range of public health activities.
    HIV/AIDS Surveillance.--Within a total recommendation of $1,049.2 
million (+$386.6 m) for CDC's HIV/AIDS prevention activities, CSTE 
urges an increase of $35 million in fiscal year 2006 for HIV/AIDS 
surveillance cooperative agreements with state and local health 
departments to strengthen HIV case reporting. Surveillance activities 
are critical to the goal of preventing new HIV infections which can 
save an estimated $195,000 in lifetime treatment costs per individual. 
Persistent, significant funding gaps between what state and local 
health departments have requested and what CDC can provide impede 
attainment of national prevention goals. CSTE recommends, at minimum, 
an additional $35 million for HIV/AIDS core surveillance, enhanced 
perinatal surveillance, incidence surveillance, behavioral surveillance 
and morbidity monitoring.
    National Violent Death Reporting System.--Within a total 
recommendation of $168 million (+$30 m) for CDC's National Center for 
Injury Prevention and Control, CSTE urges $10 million in funding for 
fiscal year 2006 (+$6.8 million) to continue building a fully 
implemented violent death reporting system in every state. Information 
from the reporting system can be used to target prevention and early 
intervention efforts to prevent a significant number of the 50,000 
annual deaths in the United States due to violence. Increased resources 
in fiscal year 2006 would be used to create uniform reporting systems 
in more states and build capacity to both collect and analyze data; 
ensure leadership and assistance; establish strong partnerships among 
federal, state, and non-governmental organizations; and research 
potential barriers to data collection. As of August, 2004, CDC is 
funding 17 states: AK, CA, CO, GA, KY, MA, MD, NC, NJ, NM, OK, OR, RI, 
SC, UT, VA, WI.
    State-Based Occupational Safety and Health Surveillance.--Within a 
total recommendation of $335 million (+$49 m) for CDC's NIOSH 
activities, CSTE urges that $10 million be provided in fiscal year 2006 
to fully fund this program to prevent workplace injuries, diseases and 
death.. Both the CDC and CSTE believe that programs should be 
established within State Health departments as one of the most 
effective ways to build a nationwide system to prevent major causes of 
injuries and illnesses that are caused by hazardous conditions at work. 
The CDC and CSTE have established 13 occupational health indicators 
that every State should use to measure the burden of workplace injuries 
and illnesses, and then determine where they need to act to reduce 
preventable disease and disability in the population. In fiscal year 
2005, NIOSH has funded the first 12 States to establish programs to use 
these indicators to count workplace injuries and illnesses, and make 
recommendations about how to prevent a few important health conditions 
(such as asthma, pesticide illness, silica lung diseases, and 
needlesticks). This program should be expanded to all 50 States to 
assure that every State has the capacity to track work-related health 
problems and take steps to prevent work-related injury, disease and 
death. Professional judgment assesses that $10 million is needed to 
expand this program to all 50 States.
                                 ______
                                 
Prepared Statement of the Friends of the Health Resources and Services 
                         Administration (HRSA)

    The Friends of HRSA is an advocacy coalition of more than 100 
national organizations, collectively representing millions of public 
health and health care professionals, academicians and consumers. Our 
member organizations strongly support programs that assure Americans' 
access to health services.
    HRSA programs assure that all Americans have access to our nation's 
best available health care services. Through its programs in thousands 
of communities across the country, HRSA provides a health safety net 
for medically underserved individuals and families, including 45 
million Americans who lack health insurance; 49 million Americans who 
live in neighborhoods where primary health care services are scarce; 
African American infants, whose infant mortality rate is more than 
double that of whites; and the estimated 850,000 to 950,000 people 
living with HIV/AIDS. Programs to support the underserved place HRSA on 
the front lines in erasing our nation's racial/ethnic and rural/urban 
disparities in health status. HRSA funding goes where the need exists, 
in communities all over America. The Friends support a growing trend in 
HRSA programs to increase flexibility of service delivery at the local 
level, necessary to tailor programs to the unique needs of America's 
many varied communities. The agency's overriding goal is to achieve 100 
percent access to health care, with zero disparities. In the best 
professional judgment of the members of the Friends of HRSA, to respond 
to this challenge, the agency will require a funding level of at least 
$7.5 billion for fiscal year 2006.
    Through its many programs and new initiatives, HRSA helps countless 
individuals live healthier, more productive lives. In the 21st century, 
rapid advances in research and technology promise unparalleled change 
in the nation's health care delivery system. HRSA is well positioned to 
meet these new challenges as it continues to provide first-rate health 
care to the nation's most vulnerable citizens. We are grateful to the 
Subcommittee for your consistent strong support for all of HRSA's 
programs, including the initiatives in terrorism preparedness and 
response in the past. Unfortunately, the president's budget overall 
recommends a massive $838 million or over 12 percent cut to the agency 
for fiscal year 2006. We urge the members of the Subcommittee to 
restore the cuts and fund the agency at a level that allows HRSA to 
effectively implement these important programs.
    Community-based health centers and National Health Service Corps-
supported clinics form the backbone of the nation's safety net. More 
than 4,000 of these sites across the nation provide needed primary and 
preventive care to nearly 15 million poor and near-poor Americans. HRSA 
primary care centers include community health centers, migrant health 
centers, health care for the homeless programs, public housing primary 
care programs and school-based health centers. Health centers provide 
access to high-quality, family-oriented, culturally and linguistically 
competent primary care and preventive services, including mental and 
behavioral health, dental and support services. Nearly three-fourths of 
health center patients are uninsured or on Medicaid, approximately two-
thirds are people of color, and more than 85 percent live below 200 
percent of the poverty level. Additional primary care is provided by 
2,700 clinicians in the National Health Service Corps. Corps members 
work in communities with a shortage of health professionals in exchange 
for scholarships and loan repayments. The Friends of HRSA are pleased 
that the president has requested a significant 17.5 percent increase 
for Community Health Centers for a total of $2.038 billion.
    The Friends are concerned about a number of programs slated for 
deep cuts or elimination under the Administration's fiscal year 2006 
budget proposal. An adequate, diverse, well-distributed and culturally 
competent health workforce is indispensable to our national readiness 
efforts. We are concerned with the president's proposed cut for 
hospital preparedness. In the post 9/11 era, all responders, providers 
and facilities must be ready to detect and respond to complex 
disasters, including terrorism, and HRSA must continue to support these 
vital programs.
    HRSA Health Professions Programs under Title VII and VIII address 
the need for an adequate national workforce in the face of projected 
nationwide shortages of nurses, pharmacists, and other professionals. 
Graduates of these programs are up to 10 times more likely to practice 
in underserved areas, and they are up to 5 times more likely to be 
minorities. These programs provide support to students, programs, 
departments, and institutions to improve the accessibility, quality, 
and racial and ethnic diversity of the health care workforce. In 
addition to providing unique and essential training and education 
opportunities, these programs help meet the health care delivery needs 
of the areas in this country with severe health professions shortages, 
at times serving as the only source of health care in many rural and 
disadvantaged communities. The Friends are greatly concerned about the 
elimination of most funding for the Title VII health professions 
training programs and flat funding for Title VIII nurse training.
    The Healthy Community Access Program is an example in which 
communities build partnerships among health care providers to deliver a 
broader range of health services to their neediest residents. Grantees 
are public or private entities that demonstrate a commitment to 
bridging service gaps and improving health outcomes for uninsured and 
underserved people. The Friends are very concerned that the 
Administration's budget proposal once again recommends eliminating this 
program of coordinated service delivery, an innovative program that 
does not duplicate other available programs.
    Another vital program administered by HRSA is newborn screening. 
Newborn screening is a public health activity used for early 
identification of infants affected by certain genetic, metabolic, 
hormonal or functional conditions for which there is effective 
treatment or intervention. Screening detects disorders in newborns 
that, left untreated, can cause death, disability, mental retardation 
and other serious illnesses. Parents are often unaware that while 
nearly all babies born in the United States undergo newborn screening 
tests for genetic birth defects, the number and quality of these tests 
vary from state to state. Screening programs coordinated through the 
HRSA Bureau of Maternal and Child Health will assure that every baby 
born in the US receive, at a minimum, a universal core group of 
screening tests regardless of the state in which he/she is born.
    Title 26 of the Children's Health Act of 2000 authorized funding 
for grants and programs to improve state-based newborn screening. This 
provision also called for an advisory committee to provide advice and 
recommendations to the Secretary for the development of grant 
administration policies and priorities, and to enhance the ability of 
the Secretary to reduce mortality or morbidity from heritable 
disorders. The Secretary appointed 15 members to this committee in 
February 2004. HRSA, together with this committee, recently published a 
report to be considered by the Secretary, which makes recommendations 
on the number and types of conditions that should be required by state 
programs. The Friends are very concerned that the Administration's 
budget did not include additional funding for such activity and that 
once again, the President's budget zeroed-out existing funding for the 
universal newborn hearing screening program. The newborn screening 
program is vital to ensuring that newborns are screened and treated for 
conditions that, if left alone, disability, mental retardation and even 
death.
    HRSA programs improve health care service for the more than 61 
million people who live in rural America. Although almost a quarter of 
the population lives in rural areas, only an eighth of our doctors work 
there. Because rural families earn less than urban families, many 
health problems associated with poverty are more serious, including 
high rates of chronic disease and infant mortality. While the recently 
passed Medicare prescription drug bill included several enhancements 
for Medicare reimbursement for rural hospitals, this does not justify 
the elimination of small, targeted programs designed to improve access 
to health care services in rural areas. The deep $115 million cut 
proposed for rural health programs has the potential to only exacerbate 
rural/urban health disparities seen today.
    In light of many states experiencing budget crises, HRSA's State 
Planning Grants Program provides one-year grants to States to develop 
plans for providing access to affordable health insurance coverage to 
all their citizens. Considering that 45 million Americans are 
uninsured, with many individuals simultaneously being dropped from 
Medicaid and SCHIP rolls, there is a need for states to explore 
alternative approaches that provide health insurance benefits to its 
residents that are affordable in nature. The potential for states to 
share best practices as a result of this program is enormous, and 
therefore the Friends of HRSA is gravely concerned with this program's 
proposed elimination in the president's budget request.
    Also, the proposed elimination of the Emergency Medical Services 
for Children Program is of concern considering many children who are 
eligible for Medicaid and SCHIP cannot enroll due to state enrollment 
limits and budgetary pressures. Therefore, these uninsured children 
will likely increasingly utilize emergency health services, as they are 
less likely to have a usual source of care. Not investing in improving 
the quality of emergency health services to children, especially at 
this time, may result in higher rates of death and disability among 
this population. Also, this program, as outlined in the midcourse 
review of the EMSC Five-Year Plan, 2001-2005, has been shown to make 
significant progress in meeting stated objectives to improve emergency 
health service delivery to children.
    The Friends of HRSA are also concerned with the proposed flat 
funding of programs that make a difference in thousands of communities 
across the United States, and ultimately affect the lives of millions. 
The Maternal and Child Health Block Grant is another source of flexible 
funding for states and territories to address their unique needs, and 
remains in great need of increased, not flat, funding. The Block Grant 
is one of several HRSA Maternal and Child Health programs. Each year, 
more than 26 million pregnant women, infants and children nationwide 
are served by a MCH program. Of the nearly 4 million mothers who give 
birth annually, almost half receive some prenatal or postnatal service 
from a MCH-funded program. MCH programs increase immunizations and 
newborn screening, reduce infant mortality and developmentally 
handicapping conditions, prevent childhood accidents and injuries, and 
reduce adolescent pregnancy. Although states in theory could use MCH 
block grant funds to continue the universal newborn hearing screening 
and Emergency Medical Services for Children programs, two programs that 
have been proposed for elimination, in reality this is not a viable 
alternative. With the proposed flat funding of the block grant, funding 
additional programs under its auspices would mean that programs 
currently funded would have to be cut.
    Title X of the Public Health Service Act was enacted to provide 
high-quality, subsidized contraceptive care to those who need but 
cannot afford such services, to improve women's health, reduce 
unintended pregnancies, and decrease infant mortality and morbidity. 
Title X programs provide comprehensive, voluntary and affordable family 
planning services to millions of low-income women and men--many of whom 
are uninsured--at more than 4,600 clinics nationwide. People who visit 
Title-X funded clinics receive a broad package of preventive health 
services, including breast and cervical cancer screening, blood 
pressure checks, anemia testing, and STD/HIV screening.
    The Ryan White CARE Act programs, administered by HRSA's HIV/AIDS 
Bureau, are the largest single source of federal discretionary funding 
for HIV/AIDS health care for low-income, uninsured and underinsured 
Americans. We are very concerned that most programs under the Act would 
be flat-funded should the figures requested by the Administration be 
implemented, which will not be enough to meet the growing need and 
demand for services. The CARE Act program is an important safety net 
program, providing an estimated 533,000 people access to services and 
treatments each year. In addition to primary health care, CARE Act 
programs support the dissemination of drug therapies, home-based care, 
early intervention services, treatment adherence, case management and 
support. The CARE Act also funds a dental reimbursement program and the 
AIDS Education and Training Centers that offers specialized clinical 
education on the latest in HIV/AIDS care. Only the State AIDS Drug 
Assistance Program (ADAP), which provides medications to over 120,000 
individuals those living with HIV/AIDS who would otherwise fall through 
the cracks, lacking private health insurance, but ineligible for 
Medicaid, receives an increase of $10 million over fiscal year 2005.
    Cross-cutting HRSA programs continually respond to new public 
health challenges. Tooth decay remains the single most chronic 
childhood disease in the nation. About 125 million Americans have no 
dental insurance; lack of access to dental care is especially severe 
among children of poor, rural and minority families. A quarter of the 
nation's school-age children have 80 percent of all dental disease, 
putting them at risk for a host of related illnesses. And as new drugs 
help people with HIV/AIDS live longer, healthier lives, their need for 
regular oral health care will continue to climb. HRSA can help both 
groups by increasing the number of dentists in community and school-
based centers and by providing greater reimbursements to hospital 
dental clinics and dental schools for the growing costs of treating 
people living with HIV/AIDS.
    The members of the Friends of HRSA are grateful for this 
opportunity to present our views to the Subcommittee.
                                 ______
                                 
        Prepared Statement of the InterTribal Bison Cooperative

                      INTRODUCTION AND BACKGROUND

    My name is Ervin Carlson, a Tribal Council member of the Blackfeet 
Tribe of Montana and President of the InterTribal Bison Cooperative. 
Please accept my sincere appreciation for this opportunity to submit 
testimony to the honorable members of the Appropriations Sub-Committee 
on Labor, Health and Human Services and Education. The InterTribal 
Bison Cooperative (ITBC) is a Native American non-profit organization, 
headquartered in Rapid City, South Dakota, comprised of 54 federally 
recognized Indian Tribes located within 18 States across the United 
States.
    Buffalo thrived in abundance on the plains of the United States for 
many centuries before they were hunted to near extinction in the 1800s. 
During this period of history, buffalo were critical to survival of the 
American Indian. Buffalo provided food, shelter, clothing and essential 
tools for Indian people and insured continuance of their subsistence 
way of life. Naturally, Indian people developed a strong spiritual and 
cultural respect for buffalo that has not diminished with the passage 
of time.
    Numerous tribes that were committed to preserving the sacred 
relationship between Indian people and buffalo established the ITBC as 
an effort to restore buffalo to Indian lands. ITBC focused upon raising 
buffalo on Indian Reservation lands that did not sustain other economic 
or agricultural projects. Significant portions of Indian Reservations 
consist of poor quality lands for farming or raising livestock. 
However, these wholly unproductive Reservation lands were and still are 
suitable for buffalo. ITBC began actively restoring buffalo to Indian 
lands after receiving funding in 1992 as an initiative of the Bush 
Administration.
    Upon the successful restoration of buffalo to Indian lands, 
opportunities arose for Tribes to utilize buffalo for tribal economic 
development efforts. ITBC is now focused on efforts to assure that 
tribal buffalo projects are economically sustainable. Federal 
appropriations have allowed ITBC to successfully restore buffalo the 
tribal lands, thereby preserving the sacred relationship between Indian 
people and buffalo. The respect that Indian tribes have maintained for 
buffalo has fostered a serious commitment by ITBC member Tribes for 
successful buffalo herd development. The successful promotion of 
buffalo as a healthy food source will allow Tribes to utilize a 
culturally relevant resource as a means to achieve self-sufficiency.

        FUNDING REQUEST FOR PREVENTATIVE HEALTH CARE INITIATIVE

    The InterTribal Bison Cooperative respectfully requests an 
appropriation for fiscal year 2006 in the amount of $2,000,000 in the 
form of an earmark to the Department of Health and Human Service 
Department's budget. ITBC intends to utilize the funds to conduct a 
national demonstration project focused on the delivery of bison meat to 
Native Americans suffering from diet related diseases.
    The Native American population currently suffers from the highest 
rates of Type 2 diabetes. The Indian population further suffers from 
high rates of cardio vascular disease and various other diet related 
diseases. Studies indicate that Type 2 diabetes commonly emerges when a 
population undergoes radical diet changes. Native Americans have been 
forced to abandon traditional diets rich in wild game, buffalo and 
plants and now have diets similar in composition to average American 
diets. More studies are needed on the traditional diets of Native 
Americans versus their modern day diets in relation to diabetes rates. 
However, based upon the current data available, it is safe to assume 
that disease rates of Native Americans are directly impacted by a 
genetic inability to effectively metabolize modern foods. More 
specifically, it is well accepted that the changing diet of Indians is 
a major factor in the diabetes epidemic in Indian Country.
    Approximately 65-70 percent of Indians living on Indian 
Reservations receive foods provided by the USDA Food Distribution 
Program on Indian Reservation (FDPIR) or from the USDA Food Stamp 
Program. The FDPIR food package is composed of approximately 58 percent 
carbohydrates, 14 percent proteins and 28 percent fats. Studies have 
shown that the FDPIR food package has not been compatible with the 
genetic compositions of Native Americans and has been a major factor in 
the high incidence of diet-related disease among Native Americans. 
Indians utilizing Food Stamps generally select a grain based diet and 
poorer quality protein sources such as high fat meats based upon 
economic reasons and the unavailability of higher quality protein food 
sources.
    Buffalo meat is low in fat and cholesterol and is compatible to the 
genetics of Indian people. ITBC intends to develop a health care 
initiative that would educate Indian Reservation families of the 
benefits of incorporating buffalo meat into their diets. In conjunction 
with educating Reservation families on the benefits of buffalo meat, 
ITBC intends to develop methods to make buffalo meat accessible for 
Indian families and to promote incorporation of buffalo into their 
diets. ITBC intends to coordinate with Reservation health care 
providers in nutritional studies of Reservation populations that 
incorporate buffalo meat into diet packages.
    ITBC believes that incorporating buffalo meat will positively 
impact the diets of Indian people living on Reservations. A healthy 
diet for Indian people that results in a lower incidence of diabetes 
and other diet related illnesses will reduce Indian Reservation health 
care costs and result in a savings for taxpayers.

          FUNDING REQUEST FOR ITBC TRAINING AND LABOR PROGRAM

    The InterTribal Bison Cooperative respectfully requests an 
appropriation for fiscal year 2006 in the amount of $500,000. This 
amount is $400,000 above the fiscal year 2005 appropriation for ITBC 
and is critical to maintain last years funding level and to develop 
ITBC's training and labor program.
    In fiscal year 2005, the ITBC and its member Tribes were funded at 
$100,000, a decrease of $200,000 from the previous year. ITBC is now 
requesting $500,000 for fiscal year 2006 for job training as part of 
ITBC's labor initiative. To insure the success of ITBC's buffalo 
restoration efforts to Indian lands, training for the various jobs 
related to the buffalo projects is essential. Most member Tribes of 
ITBC have reservation unemployment rates of 72 percent. Jobs 
opportunities on most Indian Reservations are limited, low-paying, and 
often seasonal and temporary. The jobs created by buffalo restoration 
to Indian lands will positively impact Tribal unemployment rates and 
the overall Reservation poverty levels. Raising buffalo as an economic 
development effort requires skilled labor in permanent employment. ITBC 
has developed a job training program incorporating on-the-job training 
and work experience for youth that specifically addresses the unique 
needs of managing and maintaining buffalo. ITBC's training program 
further focuses on strengthening the economic development opportunities 
of buffalo restoration with training specific to meat processing, 
veterinary science, wildlife and biological services, infrastructure 
development, business and management training, and the overall 
development of a skilled workforce.
    Sufficient funding for job training is critical to the success of 
the buffalo restoration projects. The increase in funding will ensure 
that ITBC can provide job training, job growth training to ITBC member 
tribes. Without funding at the requested level, the buffalo restoration 
projects have less assurance of success.

                       ITBC GOALS AND INITIATIVES

    In addition to developing a preventative health care initiative, 
ITBC intends to continue with buffalo restoration efforts and the 
Tribal buffalo marketing initiative.
    In 1991, seven Indian Tribes had small buffalo herds, with a 
combined total of 1,500 animals. The herds were not utilized for 
economic development but were often maintained as wildlife only. During 
ITBC's relatively short 10-year tenure, it has been highly successful 
at developing existing buffalo herds and restoring buffalo to Indian 
lands that had no buffalo prior to 1991. Today, through the efforts of 
ITBC, over 35 Indian Tribes are engaged in raising over 15,000 buffalo. 
All buffalo operations are owned and managed by Tribes and many 
programs are close to achieving self-sufficiency and profit generation. 
ITBC's technical assistance is critical to ensure that the current 
Tribal buffalo projects gain self-sufficiency and become profit-
generating. Further, ITBC's assistance is critical to those Tribes 
seeking to start a buffalo restoration effort.
    Through the efforts of ITBC, a new industry has developed on Indian 
reservations utilizing a culturally relevant resource. Hundreds of new 
jobs directly and indirectly revolving around the buffalo industry have 
been created. Tribal economies have benefited from the thousands of 
dollars generated and circulated on Indian Reservations.

                               CONCLUSION

    ITBC has proven highly successful since its establishment to 
restore buffalo to Indian Reservation lands to revive and protect the 
sacred relationship between buffalo and Indian Tribes. Further, ITBC 
has successfully promoted the utilization of a culturally significant 
resource for viable economic development.
    ITBC has assisted Tribes with the creation of new jobs, on-the-job 
training and job growth in the buffalo industry resulting in the 
generation of new money for tribal economies. ITBC is also actively 
developing strategies for marketing Tribally owned buffalo. Finally, 
and most critically for Tribal populations, ITBC is developing a 
preventive health care initiative to utilize buffalo meat as a healthy 
addition to Tribal family diets to reduce the incidence of diet-related 
illnesses.
    ITBC strongly urges you to support its request for a $2,000,000 
earmark to the Department of Health and Human Service Department's 
budget to develop the critically needed preventative health care 
initiative utilizing Tribally produced buffalo.
                                 ______
                                 
             Prepared Statement of the Lummi Indian Nation

                               WHO WE ARE

    The Lummi Nation is a party to the Point Elliot Treaty of 1855. 
Under this Treaty we understand that the Lummi Nation has secured the 
protection of the United States of America and has reserved the right 
to govern our own lands, people and the people who enter these lands 
voluntarily. The Lummi Nation is a federally recognized Indian tribal 
government located in what is now called the State of Washington. The 
Lummi Nation includes a population of nearly 5,000 people. The Lummi 
Nation land base includes over 12,500 upland acres and 5,000 acres of 
tidelands. The Lummis are a fishing people with fishing rights in the 
San Juan Islands and much of Puget Sound and its associated waterways 
extending for hundreds of miles.

Self-governing Status
    The Lummi Nation is one of the first self-governance Tribes. 
Although many thought the Lummi Nation was seeking to establish a new 
relationship with the Federal government, it was really seeking to re-
establish the relationship that it started in 1855; to affirm the 
government-to-government relationship that began back then and reshape 
it into a relationship that fits today's realities, needs and goals. 
Each generation must continue the unbroken promise to take 
responsibility for the welfare of our people that began in the past and 
extends into the future.

Health Disparities Index
    Over the past several years there has been growing concern over the 
disparities in Health care funding that is available to disadvantaged 
populations within the United States. Unfortunately this concern has 
not generated additional funding for health care services. Instead the 
information that there are substantial and verifiable disparities in 
the level of funding provided to minority population. New funding has 
been appropriated to study the problem and to make recommendations that 
will most likely include a recommendation for additional service 
funding.

U.S. Civil Rights Commission Report
    The Civil Rights Report ``A Quiet Crisis'' was issued last year. In 
this report, the federal government provides a devastating indictment 
of the level of funding for Indian Country. This situation did not 
occur during the current administration, nor did it occur during the 
previous administration. This is not about politics. It is about human 
beings.

                   INDIAN HEALTH CARE IMPROVEMENT ACT

    The Lummi Nation wants the Congress and the Department to support 
that section of the proposed Indian Health Care Improvement Act which 
enables tribes to not only participate but to operate Medicaid Program 
services consistent with the need for health care service needs of 
their people. This proposal is budget neutral. These costs are already 
included in the current expenditure. This is simply re-routing a 
existing expenditures through the Tribal governments, which are closest 
to the people who are being served. This proposal enables Tribal 
governments to develop their own Medicaid Services plans instead of 
simply participating in the State's plan.

               HEAD START BUREAU--NEW HEAD START FACILITY

    The Lummi Nation is proud to have operated a Head Start Program 
since 1969. Our Head State Program now serves one hundred and eighteen 
children (118) and their families. However, the Lummi Nation Head Start 
Program needs to serve over two hundred (200). The limitations of the 
existing facility have limited the expansion of the program and its 
badly needed services. The Lummi Nation has completed construction of a 
new school facility with Bureau of Indian Affairs funding. In the 
process of constructing this facility the Lummi Nation planned for the 
construction of a new Head Start Facility adjacent to the new School 
Facility. Water, sewer and electrical services have been stubbed out to 
the site, thereby reducing the cost of constructing the facility. The 
first phase of construction will cost approximately $500,000.

                ADMINISTRATION FOR CHILDREN AND FAMILIES

Tribal Social Services Demonstration Projects
    ACF staff have informed Tribal Leadership the Department was 
considering a demonstration project to provide Tribes with direct 
access to Title IV (b) and Title IV (e) Social Services and Foster Care 
Services. The Lummi Nation supports the idea of a demonstration project 
and would eagerly participate in such a project. The Lummi Nation would 
support legislation that enables tribal governments to work directly 
with DHHS to access funding for Title IV (b), (c), (d), and (e) while 
maintaining their service relationship with the State services for the 
benefit of all Indian children.

Unemployment and Poverty
    The Lummi Nation approaches the problems of poverty and welfare 
through its own experience. The Lummi Nation economy is unique. It had 
remained a traditional fishing economy in the 21st century. The 
strength of the annual salmon runs had supported the Lummi Nation 
economy since time immemorial. However, these runs have finally 
succumbed to combination of farm fish competition, over-fishing and 
disappearing habitat.

Increasing Welfare Case Load
    The experience of the Lummi Nation is that TANF caseloads are 
increasing not decreasing. Due to the failure of the last 5 years 
fishing seasons the Lummi Nation fishers are being added into the 
existing welfare base case loads for the TANF and BIA General 
Assistance Programs. Each Lummi fisher person supports an additional 
four to five families that worked on their boat and received a share of 
the total income. These fishing boats have reduced by 53 percent from 
700 to 373. What community in the United States could sustain this 
level of economic disaster? For the Lummi Nation this is the bankruptcy 
of nearly all its small businesses owners/operators within a short 
period of time.

Funding for Tribes to Build Social Services/TANF Infrastructure
    The existing TANF funding for Tribes fails to recognize the long-
term investment in the development of the State Welfare infrastructure. 
Therefore, Tribes are presented a less than level playing field when 
they seek to develop and implement welfare service programs that meet 
the needs of their people. The Lummi Nation urges the Committee to 
consider earmarking a portion of the funding provided to States for 
their administrative costs to support the development of Tribal TANF 
infrastructure. This funding should be provided directly to Tribes who 
have assumed the responsibility for operating TANF.

       SUBSTANCE ABUSE AND MENTAL HEALTH SERVICES ADMINISTRATION

Tribal Substance Abuse Block Grant
    The Lummi Nation has been able to have several meeting with the 
senior management of the Substance Abuse and Mental Health Services 
Administration over the past year. During one of these meeting we 
suggested that they re-program just one year's increase in the funding 
that is available to ``States under the Substance Abuse Block Grant 
funding. Currently only the Red Lake Ban of Chippewa is receiving an 
allocation directly from the Substance Abuse Block Grant administered 
by the Substance Abuse and Mental Health Services Administration. The 
Tribal specific Block Grant Program could be started using only the 
increases that are appropriated for the general population re-
programmed as a Tribal only Substance Abuse Block Grant. Then Congress 
would subsequently appropriate enough funds for annual inflationary 
increases for both the State Block Grant and the Tribal Block Grant.

Alcohol and Substance Abuse Program Infrastructure Funding
    SAMHSA has been able to support the development of State Alcohol 
and Substance abuse program infrastructure. While Tribal governments 
face the same data challenges that are posed by the operation of the 
Alcohol and Substance Abuse Treatment, Prevention and After-care 
activities. Apparently tribal governments can achieve what State 
governments who have access to tax bases of their own, cannot do 
without Federal assistance.

                          DEPARTMENT OF LABOR

Jobs Now--Job Creation and Economic Development
    In response to the economic fishing disaster for the Lummi people, 
of past 5 years, the Lummi Nation has created the JOBS NOW Initiative 
and is in the process of developing a long-term economic stimulus plan. 
These initiatives utilize all of the Lummi Nation projects, services, 
and resources to address the internal, social and economic needs of 
Lummi Nation families. Through this initiative the Lummi Nation has 
been able to register its membership in a job skills bank and 
identified area of job training that are in demand by the local labor 
market and consistent with the employment preferences of the 
membership.

Lummi Nation Families Ned 500 Jobs to Replace Lost Fishing Industry 
        Jobs
    The goal of the Lummi Nation Salmon Recovery Initiative is to 
create 500 jobs that provide a family wage to confront the current and 
long-term effects of the fishing economic disaster that is facing Lummi 
Nation members. Therefore the Lummi Nation urges the Committee to 
support additional job training program funding earmarked to address 
the economic crisis that is facing the members of the Lummi Nation.

Lummi Nation Dislocated Fishers Project
    The Lummi Nation is fully aware of how different, how culturally 
specific this economic dislocation is. The Lummi Nation expects the 
federal government including the Department of Labor to recognize the 
unique relationship that exits between the Lummi Nation and the United 
States of America through the Point Elliot Treaty of 1855.
    The Lummi Nation anticipated that it would be afforded the full 
discretion allowed under the law. Instead we believe that we have been 
held hostage to the past experiences of the Dislocated Worker Program. 
Past practices are not useful guides to new situations. We are 
disappointed with the reaction of the Department of Labor to the needs 
of our community members. The situation at Lummi Nation is a real 
economic dislocation, not just a profit dislocation. This is not a 
company failure. This is not simply a mater of mismanagement and plant 
failure. We are not working with workers but with small businessmen who 
were previously successfully self-employed. The service models that are 
imposed by the Department of Labor are based on the plant failure 
model.
    It is clear that the intent of the legislation is to assist workers 
to get jobs when the industry that supported them is no longer 
operable. Our situation is clearly within the intent of the authorizing 
legislation. The fishing industry to which our people have devoted 
their lives and invested their fortune has changed, due to no action or 
inaction on the part of the workers for whom assistance is sought.

Negotiated Standard
    During negotiations with the Department of Labor the Lummi Nation 
sought and received a promise that funding would be available to meet 
the needs of all eligible members of the Lummi Nation. The Lummi Nation 
expects the Department to honor this standard and continue funding of 
this project until all eligible Lummi Nation members have been provided 
services such that they are able to secure and maintain comparable 
permanent employment.

+$420,000.--Additional funding for Lummi Nation WIA Programs and 
        Services
    The Lummi Nation allocation for funding under the WIA Comprehensive 
and Youth Programs is less than one third of what it needs to be. The 
Lummi Nation is requesting that the Committee review its allocations 
and increase the funding that is available to the Lummi Nation by three 
(3) times. The Lummi Nation receives $140,000 annually to meet the 
needs of 5,000 people, with multiple needs including basic reading and 
writing skills, physical therapy, other personal issues to address 
prior to job training and eventually employment. The Lummi Nation needs 
an allocation of $420,000.

                        DEPARTMENT OF EDUCATION

Funding for Tribal Education Departments
    This is needed by all of Indian Country. Those tribes that do not 
operate their own schools need the infrastructure to support their 
youth in the public schools. Those Tribes that do operate schools need 
the Department format to insure that educational services are connected 
to the Tribal government.

No Child Left behind
    The United States of America has left behind Indian children,. 
While we are supportive of many provision of the Act we are not aware 
of any benefits that it has brought to us. Indian children are still 
left behind by the lack of adequate school and preschool facilities, 
teachers and operating resources. While the 2006 Presidents budget 
Request does includes requests to maintain the 2004 funding level it is 
woefully inadequate. The leading cause of death in our community is 
abuse of alcohol and/or drugs. Children who live in such a community 
have significant social, developmental needs that must be addressed so 
that basic educational services can be of any value. The current 
funding level mean that Indian Children will continue to be left behind 
as the rest of America is catapulted into the 21st Century.

Vocational Rehabilitation
    The Lummi Nation is a long-standing grantee of the Department's 
Indian Vocational Rehabilitation. We are grateful for the support of 
the Department for the development of the Lummi Nation Vocational 
Rehabilitation Program as well as the funding to provide mush needed 
services for our membership. The Department needs to insure that the 
full amount of this allocation is available for the benefit of Indian 
people.

477 Program
    The Lummi Nation along with other who are participating in the 477 
Program are seeking to consolidate all employment and training 
programs, services functions and activities. The Education Department 
needs to fully participate in this program. The Lummi Nation urges the 
Committee to require the Department to meet with Tribal leadership and 
members of the Committee staff to identify the barriers to full 
participation and develop appropriate administrative and or legislative 
remedies.
                                 ______
                                 
   Prepared Statement of the National Association of County and City 
                            Health Officials

                                SUMMARY

    The proposed cuts in the fiscal year 2006 budget of the Centers for 
Disease Control and Prevention (CDC) fall disproportionately on local 
and state public health departments. The two largest proposed program 
cuts for CDC are a reduction of $130 million in funding for state and 
local bioterrorism preparedness and elimination of the $131 million 
Preventive Health and Health Services block grant program. Such funding 
cuts would seriously compromise the ability of the nation's 
governmental public health system to fulfill its mission of protecting 
and promoting health.
    Local public health departments work every day on the front lines 
to combat threats to the health of their communities. They can ill 
afford substantial reductions in federal support for their roles as 
first responders to bioterrorism and other public health emergencies. 
Moreover, local public health departments receive about 40 percent of 
the Preventive Health and Health Services block grant (PHHS) funds. 
These enable them to carry out programs ranging from prevention of 
heart attack and stroke to combating West Nile virus. In states where 
local health departments rely on these funds to run prevention programs 
for which no other sources of funding are available, activities to 
reduce the burdens of preventable disease will be reduced.
    At a time when the nation is engaged in urgent work to protect the 
homeland from terrorists, as well as to stop an epidemic of obesity, it 
is profoundly counterproductive and irrational to reduce support for 
local programs that are the first line of defense against the greatest 
threats to the health of communities. NACCHO urges Congress to continue 
funding these two CDC programs at levels no less than that of the 
current fiscal year. Those levels are $932 million for state and local 
bioterrorism preparedness and $131 million for the Preventive Health 
and Health Services block grant.

STRENGTHENING THE GOVERNMENTAL PUBLIC HEALTH SYSTEM TO IMPROVE HOMELAND 
                  SECURITY REQUIRES SUSTAINED FUNDING

    Congress recognized in 1997 an unmet need to strengthen the 
nation's capacity to respond to an act of bioterrorism and initiated 
funding for bioterrorism preparedness in fiscal year 1999. The initial 
funding of about $121 million (which included $51 million solely for 
stockpiling medications) assisted CDC and state and local health 
departments to begin examining what plans and resources were necessary. 
After 9/11 and the anthrax outbreaks in the fall of 2001, Congress 
increased bioterrorism funding markedly and included $940 million for 
building state and local capacities, of which about $870 million was 
actually made available to states and localities. The Department of 
Health and Human Services got these funds out to states and three large 
cities via cooperative agreements very promptly, far ahead of other 
homeland security funds for states and localities.
    Substantial bioterrorism preparedness funds for improving all 
aspects of preparedness have actually been in the hands of state health 
departments since August 2002, less than three years. Local public 
health departments, many of which have been funded for much less time, 
are justifiably proud of the progress they have made.
    Extensive response plans, developed in collaboration with local 
emergency management systems, have been made. Numerous ``tabletop'' and 
real field exercises have tested local capabilities. Mass vaccination 
clinics have taken place, some in conjunction with the actual 
requirement to provide smallpox vaccine to selected first responders, 
others as a real response to this year's flu vaccine shortage. 
Communications systems and equipment that enable rapid electronic 
information exchange among health departments and by health departments 
to their communities are operational. Improved systems for disease 
detection are in place.
    Local health departments have engaged hospitals, physicians, and 
other individuals and organizations in the private sector in developing 
their roles in responding to a serious disease outbreak. Complex 
logistical arrangements needed to distribute medications or equipment 
from the Strategic National Stockpile to stricken populations have been 
developed.
    In some locations, genuine public health crises, such as suspected 
SARS cases or flu vaccine shortages, have demanded a response. In the 
act of the responding, local health departments and their community 
partners continually identify new challenges and new ways to improve 
their ability to respond. Improving a locality's ability to detect a 
disease outbreak promptly and to contain it swiftly is a continuous 
process. Interrupting that process through funding cuts would take the 
nation's bioterrorism preparedness backwards, not forward. New 
capacities that are now in place cannot be sustained without sustained 
funding.
    The Administration has proposed to fund more medicines and supplies 
for the Strategic National Stockpile and to purchase portable medical 
treatment units, instead of sustaining funding for state and local 
capacities. Yet the acquisition of vaccines or equipment is useless 
unless there are trained people and established systems in place to get 
the vaccines or treatment to stricken populations. According to a 
recent report by the Government Accountability Office (``Bioterrorism: 
Information on Jurisdictions' Expenditure and Reported Obligation of 
Program Funds,'' February 2005), state and local governments are taking 
action responsibly to prepare for bioterrorism and there are not large 
surpluses of unspent funds. It is wholly irrational to suggest that 
more vaccines and supplies can improve national preparedness, if 
funding to sustain health departments' capacity to use those vaccines 
and supplies is simultaneously cut back.
    The nation has a long way to go before every citizen enjoys the 
best possible protection by disease detection and response systems that 
work as quickly as humanly possible. Providing this protection is the 
job of the governmental public health system. No other entity can do 
it. NACCHO urges Congress not to cut back funds available to local 
public health departments, the nation's first responders to 
bioterrorism.

           THE PHHS BLOCK GRANT IS A LINCHPIN FOR PREVENTION

    Local public health departments receive approximately 40 percent of 
the Preventive Health and Health Services block grants nationally. The 
proportion varies among states from less than 5 percent to almost 100 
percent. The block grant funds fulfill three critical purposes. First, 
they enable states to address critical unmet public health needs. The 
coexistence of other federal categorical public health funds does not 
mean that available categorical funds are sufficient or available to 
address all problems. They are not. Improving chronic disease 
prevention through screening programs and programs that promote healthy 
nutrition and physical activity are prime examples of activities to 
which many jurisdictions devote PHHS funds. Forty percent of fiscal 
year 2004 block grant funds were spent on chronic disease prevention, 
including prevention of obesity, stroke, heart disease, cancer, 
diabetes, and dental caries.
    Second, PHHS funds provide some flexible funding to address 
unexpected problems or problems that are unique to a particular 
geographic area. West Nile virus, a fully preventable disease spread to 
humans by mosquitoes, is one good example. Third, PHHS fund provide 
leverage for more funds and in-kind resources from non-federal sources. 
In one southern state, local health departments collectively used $2.77 
million in block grant funds to establish new prevention programs and 
generate $5 million in additional resources for those programs.
    States are fully accountable to the Department of Health and Human 
Services for their expenditures of block grant funds and report how 
much money they spend by specific program area. In those states where 
local health departments receive a significant amount of PHHS funds 
from the state, local prevention efforts will diminish. Local and state 
health departments are key leaders and providers of population-based 
prevention programs. They work to keep prevention in the public eye and 
they build on programs that have been proven effective in reducing 
disease and preventing premature death. As health care costs escalate, 
reducing the nation's commitment to prevention by eliminating the PHHS 
block grant and weakening state and local public health departments is 
unwise and uneconomic.
    The National Association of County and City Health Officials 
(NACCHO) is the organization representing the almost 3,000 local public 
health departments in the United States.
                                 ______
                                 
 Prepared Statement of the National Association of Foster Grandparent 
                           Program Directors

                              INTRODUCTION

    I am honored to testify in support of fiscal year 2006 funding for 
the Foster Grandparent Program (FGP), the oldest and largest of the 
three programs known collectively as the National Senior Volunteer 
Corps, which are authorized by Title II of the Domestic Volunteer 
Service Act (DVSA) of 1973, as amended and administered by the 
Corporation for National and Community Service (CNS).
    Good morning Mr. Chairman. My name is Brenda Lax and I have been 
the Foster Grandparent Program Director with the City of Kansas City, 
Missouri for the past 17 years. I am here in my capacity as President 
of the National Association of Foster Grandparent Program Directors 
(NAFGPD). NAFGPD is a membership-supported professional organization 
whose roster includes the majority of more than 350 directors who 
administer Foster Grandparent Programs nationwide, as well as local 
sponsoring agencies and others who value and support the work of FGP. 
This year we will celebrate our 40th Anniversary of engaging low-income 
seniors in service to children with special needs with a reception on 
September 21, 2005 here in Washington, DC. On behalf of NAFGPD members 
across the country, I would like to extend an invitation to you and 
your staff to join us for this special occasion.
    Mr. Chairman, I would like to begin by thanking you and the 
distinguished members of the Subcommittee for your steadfast support of 
the Foster Grandparent Program. No matter what the circumstances, this 
Subcommittee has always been there to protect the integrity and mission 
of our programs. Our volunteers and the children they serve across the 
country are the beneficiaries of your commitment to FGP, and for that 
we thank you. I also want to acknowledge your outstanding staff for 
their tireless work and very difficult job they have to ``make the 
numbers fit.''--an increasingly difficult task in this budget 
environment.
    Last year I had the great privilege of testifying before the House 
Subcommittee about the fiscal year 2005 budget request for FGP. While 
it was a great honor to be there, I was compelled to deliver some very 
disappointing news--a cut of some $3.5 million was proposed for our 
programs across the country. Well, Mr. Chairman under your leadership 
the Subcommittee not only rejected this misguided cut, but provided an 
increase of nearly $2 million over the fiscal year 2004 enacted level. 
NAFGPD was very glad to see this ill-conceived cut rejected, and we 
believe your action sent a message about our programs--they are alive 
and well and quite worthy of scarce federal resources.
    Thanks to your action in the fiscal year 2005 appropriations 
process, Mr. Chairman, the fiscal year 2006 budget request for FGP does 
not suggest another significant cut to our programs. Instead, the 
fiscal year 2006 budget provides an increase of $634,000 (.5 percent) 
for headquarters-based administrative functions such as training and 
technical assistance. While NAFGPD was pleased to see our programs not 
slated for a cut, we remain concerned that the Corporation's request 
does not provide any new funding where it is needed most--in the field. 
All of us recognize the spending constraints placed on the President 
and, most importantly on you and the Appropriations Committee, Mr. 
Chairman. However, in a time of such scarce federal resources, NAFGPD 
believes strongly that any new funding should flow to our programs in 
the field where it is most urgently needed, not CNCS headquarters.
    NAFGPD respectfully requests the subcommittee to provide $116.440 
million for the Foster Grandparent Program in fiscal year 2006, an 
increase of $5.016 million over the fiscal year 2005 level. This 
critical funding will ensure the continued viability of the Foster 
Grandparent Program, and allow for important expansion of this unique 
program. Specifically, this proposal would fund a 3 percent cost of 
living increase for every Foster Grandparent Program and expansion 
grants to existing programs that would add 372 new low-income senior 
volunteers to serve children.

                            FGP: AN OVERVIEW

    Established in 1965, the Foster Grandparent Program was the first 
federally funded, organized program to engage older volunteers in 
significant service to others. From the 20 original programs based 
totally in institutions for children with severe mental and physical 
disabilities, FGP now comprises nearly 350 programs in every state and 
the District of Columbia, Puerto Rico, and the Virgin Islands. All of 
these programs are now primarily based in community volunteer sites--
where most special needs children can be found today--and are 
administered locally through a non-profit organization or agency and 
Advisory Council comprised of community citizens dedicated to FGP and 
its mission. FGP represents the best in the federal partnership with 
local communities, with federal dollars flowing directly to local 
sponsoring agencies, which in turn determine how the funds are used. 
There are currently 38,700 Foster Grandparent volunteers who give over 
36 million hours annually to more than 277,000 children.
    The Foster Grandparent Program is unique for several reasons. We 
are one of only two volunteer programs in existence that enable seniors 
living on very limited incomes to serve their communities as volunteers 
by providing a small non-taxable stipend and other support which allow 
volunteers to serve at little or no cost to themselves. Our volunteers 
provide intensive, consistent service--15 to 40 hours every week, 
usually 4 hours every day. FGP provides intensive pre-service 
orientation and at least 48 hours of ongoing training every year to 
keep volunteers current and informed on how to work with children who 
have special needs. And our volunteers provide one-to-one service to 
their assigned children, exactly what is required to help prepare our 
nation's neediest children to become self-sufficient adults.

                          FGP: THE VOLUNTEERS

    The Foster Grandparent Program is a versatile, dynamic, and 
uniquely multi-purpose program. First, we give Americans 60 years of 
age or older who are living on incomes at or less than 125 percent of 
the poverty level the opportunity to serve 15 to 40 hours every week 
and use the talents, skills and wisdom they have accumulated over a 
lifetime to give back to the communities which nurtured them throughout 
their lives. Seniors in general are not valued or respected in today's 
society, and low-income seniors are particularly devalued because of 
their economic status. They are rarely asked by their communities to 
contribute through volunteering, because they are not traditionally 
those who participate in community activities.
    FGP actively seeks out these low-income seniors. We dare to ask 
them to serve, to give something back. And we help them to develop the 
additional skills they may need to function effectively in settings 
unfamiliar to them, like public schools, hospitals, childcare centers, 
and juvenile detention facilities. We also provide them with ongoing 
training and support throughout their tenure as Foster Grandparents. 
Through their service, our older volunteers say they feel and stay 
healthier, that they feel needed and productive. Most importantly, they 
leave to the next generation a legacy of skills, perspective and 
knowledge that has been learned the hard way--through experience.
    Within budgetary constraints, FGP is engaging older people who are 
not usually asked to serve and those usually considered as needing 
services rather than being able to serve: 86 percent are 65 or older 
and 45 percent come from various ethnic groups.

                           FGP: THE CHILDREN

    Through our volunteers, the Foster Grandparent Program also 
provides person-to-person service to children and youth under the age 
of 21 who have special or exceptional needs, many of whom face serious, 
often life-threatening challenges. With the changing dynamics in family 
life today, many children with disabilities and special needs lack a 
consistent, stable adult role model in their lives. The Foster 
Grandparent is very often the only person in a child's life who is 
there every day, who accepts the child, encourages him no matter how 
many mistakes the child makes, and focuses on the child's successes.
    Special needs of children served by Foster Grandparents include 
AIDS or addiction to crack or other drugs; abuse or neglect; physical, 
mental, or learning disabilities; speech, or other sensory 
disabilities; incarceration and terminal illness. Of the children 
served, 7 percent are abused or neglected, 26 percent have learning 
disabilities, and 11 percent have developmental delays. FGP focuses its 
resources in areas where they will have the most impact: early 
intervention services and literacy activities. Nationally, 85 percent 
of the children served by Foster Grandparents are under the age of 12, 
with 39 percent of these children age 5 or under. Foster Grandparents 
work intensively with these very young children to address their 
problems at as early an age as possible, before they enter school. 
Nearly one-half of FGP volunteers serve nearly 12 million hours 
annually addressing literacy and emergent-literacy problems with 
special needs children.
    Activities of the FGP volunteers with their assigned children 
include teaching parenting skills to teen parents; providing physical 
and emotional support to babies abandoned in hospitals; helping 
children with developmental, speech, or physical disabilities develop 
self-help skills; reinforcing reading and mathematics skills; and 
giving guidance and serving as mentors to incarcerated or other youth.

                        FGP: THE VOLUNTEER SITES

    The Foster Grandparent Program provides agencies and organizations 
providing services to special-needs children with a consistent, 
reliable, invaluable extra pair of hands 15 to 40 hours every week to 
assist in providing these services. Seventy-one percent of FGP 
volunteers serve in public and private schools as well as sites that 
provide early childhood pre-literacy services to very young children, 
including Head Start.

                      FGP: COST-EFFECTIVE SERVICE

    The Foster Grandparent Program serves local communities in a high 
quality, efficient and cost-effective manner, saving local communities 
money by helping our older volunteers stay independent and healthy and 
out of expensive in-home or institutional care. Using the Independent 
Sector's 2003 valuation for one hour of volunteer service ($17.19/
hour), the value of the service given by Foster Grandparents annually 
is over $618 million, and represents a 5-fold return on the federal 
dollars invested in FGP. The annual federal cost for one Foster 
Grandparent is $3,800--less than $4.00 per hour.
    The value local communities place on FGP and its multifaceted 
services is evidenced by the large amount of cash and in-kind donations 
contributed by communities to support FGP. For example, FGP's fiscal 
year 2001 federal allocation was matched with $40 million in non-
federal donations from states and local communities in which Foster 
Grandparents volunteer. This represents a non-federal match of 42 
percent, or $.42 for every $1.00 in federal funds invested--well over 
the 10 percent local match required by law.

                NAFGPD'S FISCAL YEAR 2006 BUDGET REQUEST

    Given the dramatically expanding number of low-income seniors 
eligible to serve and the staggering number of troubled and challenged 
children in America today, we respectfully request that the 
Subcommittee provide $116.440 million for the Foster Grandparent 
Program in fiscal year 2006, an increase of $5.016 million over fiscal 
year 2005. This critical funding will ensure the continued viability of 
the Foster Grandparent program, and allow for an expansion of this 
important program.
    The requested increase would be allocated for the following 
purposes, in order of priority:
    1st.--Award an administrative cost increase of 3 percent to each 
existing Foster Grandparent Program in order to maintain quality, 
enable recruitment and sustain the important work already being done by 
programs.
    2nd.--In accordance with the Domestic Volunteer Service Act (DVSA), 
designate one-third of the increase over the fiscal year 2005 level to 
fund Program of National Significance (PNS) expansion grants to allow 
existing FGP programs to expand the number of volunteers serving in 
areas of critical need as identified by Congress in the DVSA.
    This funding proposal will generate opportunities for approximately 
372 new low-income senior volunteers contributing in excess of 400,000 
hours of service annually to more than 2,000 additional children.
    The message is clear: (1) the population of low-income seniors 
available to volunteer 15 to 40 hours every week is increasing; (2) 
communities need and want more Foster Grandparent volunteers and more 
Foster Grandparent Programs. FGP respectfully requests increased 
funding that will address our most pressing need: a 3 percent 
administrative cost increase that will enable the program to expand its 
reach across the nation. The Subcommittee's continued investment in FGP 
now will pay off in savings realized later, as more seniors stay 
healthy and independent through volunteer service, as communities save 
tax dollars, and as children with special needs are helped to become 
contributing members of society.
    Mr. Chairman, in closing I would like to again thank you for the 
subcommittee's support and leadership for FGP over the years. NAFGPD 
takes great comfort in knowing you and your colleagues in Congress 
appreciate what our low-income senior volunteers accomplish every day 
in communities across the country.
                                 ______
                                 
         Prepared Statement of the National League for Nursing

    The National League for Nursing (NLN)--representing more than 1,200 
nursing schools and health care agencies, some 18,000 individual 
members composed of nurses, educators, administrators, public members, 
and 18 constituent leagues--appreciates the Subcommittee's past support 
for nursing education and your continued recognition of the important 
role nurses play in the delivery of health care services. We are 
concerned, however, that the advancements made by Congress to help 
alleviate the nursing shortage will be lost during the fiscal year 2006 
appropriations process unless additional resources are expended. NLN 
urges your continued support for Title VIII--Nursing Workforce 
Development Programs by ensuring that these programs are funded at a 
minimum level of $210 million for fiscal year 2006. To put this funding 
request into perspective, in 1974, during the last serious nursing 
shortage, Congress appropriated $153 million for nurse education 
programs. In today's dollars that would equate to $592 million, 
approximately four times what the federal government is spending now.
    Today's nursing shortage is very real and very different from any 
experienced in the past. The current shortage is evidenced by an aging 
workforce and an inadequate number of people entering the profession. 
Schools of nursing are suffering from a continuing and growing shortage 
of faculty, which prevents these institutions from admitting many 
qualified students who are applying to their programs. A recent NLN 
survey of nursing programs at all levels shows that an estimated 
125,000 qualified applicants were turned away from nursing programs for 
the academic year 2003-2004 because of the severe faculty shortage. The 
supply of appropriately prepared nurses and nursing faculty is 
inadequate to meet the needs of a diverse, aging population, and this 
shortfall will grow more serious over the next 5 years.
    Congress did an admirable job of passing the Nurse Reinvestment Act 
in 2002. The new monies used to fund loans and scholarships are 
appreciated. However, it has become abundantly clear that significantly 
more funding is required to even minimally meet the existing need.
    NLN's Faculty Survey conducted in 2002 concludes that not enough 
qualified nurse educators exist to teach the number of nurses needed to 
ameliorate the nursing shortage. Subsequent information indicates that 
this situation is getting more serious and is not expected to improve 
in the near future, since an inadequate number of nurse educators are 
currently in the education pipeline.
    The NLN Survey found three trends influencing the future of nursing 
education over the next decade:
  --The aging of the nurse faculty population.--An average of 1.3 full-
        time faculty members per program left their positions in 
        nursing education in 2002. About half the Survey respondents 
        had at least one unfilled budgeted full-time faculty position 
        and some have as many as 15 such positions. 36.5 percent of 
        faculty who left their positions in the preceding year did so 
        because of retirement; 8.6 percent of faculty were 61 years of 
        age or older; and 75 percent of the current faculty population 
        is expected to retire by 2019.
      Approximately 1,800 full-time faculty members leave their 
        positions each year. About 10,000 master's level nurses 
        graduate per year, 15 percent of whom would have to go into 
        teaching just to maintain the status quo. Since this is highly 
        unlikely, the gap between unfilled positions and the candidate 
        pool will widen significantly.
  --The increasing number of part-time faculty.--The number of part-
        time faculty ha increased notably since 1996--nearly 17 percent 
        in baccalaureate programs and 14 percent in associate degree 
        programs. Part-time faculty now provides approximately 23 
        percent of the estimated number of faculty FTEs.
      Part time employees are often not an integral part of the design, 
        implementation, and evaluation of the overall nursing education 
        program. Many may hold other positions that often limit their 
        availability to students. Further, many part-time faculty have 
        not been prepared for the faculty role.
  --The large number of nursing faculty who are not prepared at the 
        doctoral level.--Approximately half the full-time faculty in 
        baccalaureate and higher degree programs hold a doctoral 
        degree. In associate degree programs, doctorally prepared 
        faculty account for only 6.6 percent of the total faculty and 
        the number is slightly more than 5 percent in diploma programs. 
        Only 350 to 400 nursing students receive doctoral degrees each 
        year and the pool of doctorally prepared candidates for full-
        time nursing professorships is very limited.
      Educators without doctoral degrees may lack credibility within a 
        university setting and have limited opportunities to assume 
        leadership positions. Institutions with low numbers of 
        doctorally prepared educators may be less likely to get funds 
        to support research or educational innovations.
    As important as educational incentives are for future practicing 
nurses, the scholarships for doctoral students who will instruct the 
next generation of nurses are even more critical. Please do not allow 
us to lose ground in the fight against the nursing shortage. Fund Title 
VIII--Nursing Workforce Development Programs at a level commensurate 
with the severity of the health care crisis facing the nation today.
    Your support will help ensure that nurses exist in the future who 
are prepared and qualified to take care of you, your family, and all 
those in this country who will need our care. If you have any questions 
about NLN's position or we can be of further assistance to you, please 
feel free to contact Kathleen Ream, NLN Manager of Government Affairs, 
at 703-241-3974.
                                 ______
                                 
      Prepared Statement of the National Mental Health Association

    Thank you for this opportunity to submit testimony to the 
Subcommittee and to address the important issue of mental health. The 
National Mental Health Association (NMHA), the country's oldest and 
largest advocacy organization addressing all aspects of mental health 
and mental illness, represents over 340 affiliates throughout the 
country. NMHA is uniquely positioned to speak to the entire mental 
health and substance abuse portfolio including prevention, early 
intervention, treatment, and research.
    NMHA would like to thank Chairman Regula and Reps. Obey and Kennedy 
for your leadership and for your strong support in winning increases 
last year for mental health programs. However, we are deeply troubled 
by the Administration's current proposal to cut mental health services 
at the Center for Mental Health Services (CMHS) by a dangerous 7 
percent (from $901 to $837 million) and to increase funding for the 
National Institutes of Health (NIH) by less than 1 percent. We hope to 
highlight the tremendous need for mental health services in communities 
throughout the country and why it is imperative that we make an 
investment not cuts in mental health.

             CALL TO MAKE MENTAL HEALTH A NATIONAL PRIORITY

    NMHA strongly urges you to make mental health a national priority. 
In creating the Commission on Mental Health, President Bush 
emphatically declared that ``Our country must make a commitment: 
Americans with mental illness deserve our understanding, and they 
deserve excellent care. I look forward to . . . fixing the [mental 
health] system, so that Americans do not fall through the cracks.''
    These are not cracks; these are, at this time, unbridgeable chasms. 
As we know and as corroborated in a December 2004 New York Times 
editorial, the robust community-based mental health system that 
national leaders envisioned would replace the country's reliance on 
warehoused institutional care never materialized. As a result, an 
astounding 80 percent of children entering the juvenile justice system 
have mental disorders, and prisons and jails have become de facto 
mental hospitals, but without the treatment that would allow 
individuals with a mental illness to control their symptoms and 
organize their lives.
    The President's New Freedom Commission on Mental Health, the first 
such commission in over 25 years, recommended a fundamental 
transformation of the Nation's approach to mental health care. This 
transformation must ensure that mental health services and supports 
actively facilitate recovery, and build resilience to face life's 
challenges--with consumers active participants in designing and 
developing their plans of care. The Commission also found that our 
nation's failure to make mental health a priority is a national 
tragedy. A measure of the scope of that tragedy is the 
disproportionately high number of individuals with mental illness in 
the corrections system as well as over 30,000 lives lost annually to 
suicide--a loss, the Commission states, that is largely preventable.

          UNTENABLE FISCAL YEAR 2006 MENTAL HEALTH BUDGET CUTS

    Although mental illness (the chronic disease of the young) ranks 
first in the United States in terms of causing disability, the proposed 
fiscal year 2006 budget for the Center for Mental Health Services at 
SAMHSA would shrink funding for the federal government's lead mental 
health agency to virtually the level of support provided the agency for 
fiscal year 2002. Cutting a mental heath budget to fiscal year 2002 
levels at a time that more than 67 percent of adults and nearly 80 
percent of children who need mental health services do not receive 
treatment is hardly a formula for making mental health a national 
priority.
    NMHA strongly urges the Subcommittee to reverse the proposed 7 
percent cut or loss of nearly $70 million to mental health services at 
the Center for Mental Health Services (CMHS).
    In particular, we urge you to reverse the following proposals in 
the Administration's budget for the Substance Abuse and Mental Health 
Services Administration:
  --The proposed cut in funding for a successful youth-violence 
        prevention program by nearly a third, from $94 to $67 million;
  --The proposed cut in funding for jail diversion program by nearly 50 
        percent, from $7 to $4 million;
  --The proposed cut in funding of an additional $40 million in CMHS' 
        important Programs of Regional and National Significance 
        account--in essence slashing funding from an account aimed at 
        much needed priority programming; and
  --The proposed cut in funding for substance abuse prevention by 7 
        percent, from $198 to $184 million.
    In addition, we urge you to build on the Administration's proposal 
to:
  --Level fund critical youth suicide-prevention efforts, the 
        children's systems-of-care, the homelessness (PATH), PAIMI and 
        elderly programs, the mental health and substance abuse block 
        grants, as well as the Consumer TA Centers; and
  --Provide an increase of only 0.4 percent, on average, for research 
        activities at the National Institutes of Mental Health, Drug 
        Abuse, and Alcohol Abuse and Alcoholism.
    Lastly, we support the Administration's $6 million increase request 
for the State Infrastructure Grants, which will likely fund 11 grants 
with the proposed new total of $26 million, to assist States with 
planning and implementing the Commission's call for transformation of 
state mental health services across multiple service systems.

       YOUTH VIOLENCE PREVENTION: A WHOLLY UNWARRANTED BUDGET CUT

    Recent tragic events illustrate what we believe are critical 
failures in priority-setting in the SAMHSA budget. This month's 
horrible shootings at Minnesota's Red Lake High School, the most 
violent school slaying since Columbine, is a reminder that youth 
violence is still prevalent and underscores the need for every school 
house to be prepared to deal with traumatic, tragic events. Surely this 
incident is emblematic of the shortsightedness of the Administration's 
proposed devastating cut of nearly 33 percent or $27 million to youth 
violence prevention--the Safe Schools/Healthy Students (SS/HS) 
program--at CMHS.
    As CMHS' major school violence prevention program, the SS/HS 
initiative addresses school violence prevention through a wide range of 
early childhood development, early intervention and prevention, suicide 
prevention, and mental health treatment services. The primary objective 
of this grant program is to promote healthy development, foster 
resilience in the face of adversity, and prevent violence. The 
President's Commission report highlighted the need for the mental 
health system to coordinate better with other federal agencies. This 
landmark program, administered jointly with the Department of Education 
(Safe and Drug Free Schools Office) and the Department of Justice 
(Office of Juvenile Justice and Delinquency Prevention), does just 
that.
    The Red Lake School shooting and other such shootings underscore 
the tremendous mental health needs of young people that too often go 
unmet. One in ten children suffers from a mental disorder severe enough 
to cause some level of impairment. Even more children experience 
psychiatric trauma, or emotional harm, which is essentially a normal 
response to an extreme event that may or may not happen with some 
regularity.
    This Subcommittee should make investments not only in the area of 
youth violence prevention, but also invest in Jail Diversion programs 
designed to keep young people at home and in their communities as they 
get care. This is not the time to cut funding for programs that help to 
protect our nation's youth.

                LACK OF COMMUNITY MENTAL HEALTH SERVICES

    While we call on the Subcommittee to reverse the alarming cuts 
proposed in the SAMHSA budget, we urge that the Subcommittee also 
provide needed increases in funding. To illustrate the magnitude of 
needs that plead for attention, we urge that you take steps to address 
the shocking findings highlighted by Sen. Susan Collins (R-ME) whose 
hearing last year spotlighted the devastating reality that, every day, 
about 2,000 children and adolescents are warehoused in juvenile 
detention centers around the country simply because community mental 
health services are unavailable. An estimated $100 million of 
taxpayers' money is spent on the detention of these youth awaiting 
community mental health services. Shouldn't that $100 million and other 
precious resources be invested in the community rather than in the 
corrections system to provide cost-effective, quality mental health 
services? Consider the outrage that would be heard if 2,000 young 
people with ANY other illness not only went without treatment, but were 
involuntarily institutionalized as well.
    NMHA agrees with Senator Collins that ``another consequence of our 
tattered `safety net' for children with mental illness [is] the 
inappropriate use of juvenile detention centers as `holding areas' for 
young people who are waiting for mental health services. Like custody 
relinquishment [of children with mental disorders], these inappropriate 
detentions are a regrettable symptom of a much larger problem, the lack 
of available, affordable, and appropriate mental health services and 
support systems.''
    With this tragic situation in mind, we urge you to consider, for 
example, a greater investment in the Children's Mental Health Services 
program that would allow CMHS to expand beyond the 92 grants in 46 
States that have provided services to approximately 54,343 children 
from 1993-2004. This program, which scored highly in the OMB PART 
review/evaluation, has only served children in 274 or 9 percent of the 
3,142 counties in the United States.

    NEEDS ARE INCREASING, AND APPROACHING A MENTAL HEALTH STATE OF 
                               EMERGENCY

    The need for mental health services is ever-escalating for both 
young people and adults, and gaining ever-wider recognition. To 
illustrate, a February 2005 study found that U.S. hospital emergency 
departments greatly under-diagnose psychiatric disorders. Investigators 
from Louisiana State University examined records of more than 33,000 
patients and discovered an overall psychiatric disorder rate among 
patients of 5.27 percent--far below the national rate of 20 percent to 
28 percent. The researchers believe this points to large numbers of 
missed diagnoses. Last July a county in Nevada declared a ``State of 
Emergency'' after many individuals with mental illness overcrowded the 
state's hospitals. In Nebraska, the state last February reported its 
mental health system to be in crisis. And with the fifth-highest 
suicide rate in the nation, West Virginia's Gazette-Mail concluded 
earlier this year that the state is in the midst of a ``mental health 
crisis.''
    Broad societal mental health needs too often go unrecognized. As 
the nation grapples with an obesity epidemic, for example, there has 
been insufficient recognition of the link to mental health. Yet mental 
health issues are often closely intertwined with other chronic illness. 
In the case of obesity, for example, we can expect individuals who 
suffer from obesity to be at risk for heart disease. Two decades of 
NIMH research have shown that people with heart disease are more likely 
to suffer from depression than otherwise healthy people, and 
conversely, that people with depression are at greater risk for 
developing heart disease. With sharp cutbacks in the already modest 
(PRNS) funding available to the Center for Mental Health Services to 
address priority needs, any opportunity that might exist to address 
such co-morbidities appears futile. Yet such a focus could pave the way 
for the one in three people who have survived a heart attack and 
experience major depression in a given year to improve their overall 
health and lessen the fiscal burden on the nation's health care system.

                           RETURNING SOLDIERS

    It has been reported that through the end of September 2004, nearly 
900 troops had been evacuated from Iraq by the Army for psychiatric 
reasons, included attempts or threatened attempts at suicide. And a 
study of members of combat infantry units deployed to Iraq in 2003 
published in the New England Journal of Medicine (July 1, 2004), 
researchers found evidence of major depression, anxiety, or PTSD after 
combat duty in approximately one of every six of these troops. Dr. 
Stephen C. Joseph, an assistant secretary of defense for health affairs 
from 1994 to 1997, declared that ``the mental health consequences are 
going to be the medical story of [the Iraqi] war.'' We should not 
assume, however, that those bearing the psychic scars of this war will 
necessarily seek treatment from the Defense Department or the 
Department of Veterans Affairs. The study in New England Journal was 
particularly troubling in that regard in finding that most veterans who 
appeared to have combat-related mental health problems avoided seeking 
the treatment available in the military, due principally to stigma. 
That finding suggests that for many veterans war-related mental health 
problems may go unaddressed for a period of time. In many instances, an 
already overburdened public mental health system may be called on to 
meet their needs.
    At a minimum, this problem calls for a robust, multi-pronged 
campaign to renew and more fiercely combat the enormous stigma in key 
sectors of American society, such as among service-members. Where 
stigma and misperceptions regarding mental health problems fuel 
resistance to early intervention, one can foresee that these problems 
will simply persist and worsen. Yet with a sharply diminished budget, 
it is highly unlikely that SAMHSA could even consider a new anti-stigma 
effort.

                                SUICIDE

    Yet another very troubling dimension of the SAMHSA budget is its 
``status quo'' approach to public health crisis. Both the Institute of 
Medicine and the President's New Freedom Commission on Mental Health 
have highlighted that mental illness plays a major role in the over 
650,000 attempted suicides in America every year--30,000 suicides are 
completed. Almost twice as many individuals die from suicide than 
homicide yet hundreds of millions are spent on law enforcement and 
corrections facilities to prevent and protect Americans from homicides 
while suicide prevention funding under the proposed CMHS budget would 
be held to a mere $16.5 million. We urge the Subcommittee to heed this 
disparity and bring funding for suicide prevention efforts more closely 
in line with the scope of this public health crisis.
    The tragedy that befell Sen. Gordon Smith and his family when his 
son took his life did shine a spotlight on this unspeakable crisis. 
Last year, Congress enacted the Garrett Lee Smith Memorial Act to: (a) 
support the planning, implementation, and evaluation of organized 
activities involving statewide youth suicide intervention and 
prevention strategies; (b) authorize grants to institutions of higher 
education to reduce student mental and behavioral health problems; and 
(c) authorize funding for the national suicide prevention resource 
center. The program will provide early intervention and assessment 
services, including screening programs, to youth who are at risk for 
mental or emotional disorders that may lead to a suicide attempt, and 
that are integrated with school systems, educational institutions, 
juvenile justice systems, substance abuse programs, mental health 
programs, foster care systems, and other child and youth support 
organizations.
    Suicide is a problem of enormous scope and demands a response 
commensurate with its enormity. The truly tragic aspect to suicide is 
how largely preventable this crisis is. It is not just young people at 
risk of suicide deaths, older Americans are also at great risk. We urge 
the Subcommittee to increase both youth-suicide prevention funding and 
support for the Elderly program at CMHS to deal with suicide and other 
issues endemic to an aging population.

                                CLOSING

    Shrinking CMHS program funding to fiscal year 2002 dollar levels is 
a very troubling response to a landmark Presidential commission's call 
to make mental health a national priority. But a budget decline of this 
magnitude would have concrete implications in communities across this 
country. It would, for example, mean closing the door to states and 
communities that badly need help to improve mental health service-
delivery. It would mean no help to anguished school systems that are 
struggling to achieve the twin goals of school-safety and healthy-
students in the face of the threat of more Columbines and Red Lakes. It 
would mean despair for young people languishing in juvenile detention 
facilities across the country while they wait for community mental 
health treatment and families forced to relinquish custody of their 
children to secure desperately needed mental health services.
    Without a seismic shift in the level of priority the Federal 
government gives to mental health, and a corresponding investment in 
research, supports and services, we can expect to see a 
disproportionate numbers of individuals with mental illness who attempt 
and complete suicide or languish in corrections facilities.
    By making mental health a more robust funding priority, this 
Subcommittee could dramatically change the lives of millions of 
Americans, improving not only their well-being but our nation's 
productivity. And by investing in early intervention services and in an 
array of other mental health services and supports, precious resources 
at the state and federal level would be saved by stemming the flow of 
resources being spent in corrections or other systems that deliver 
mental health services that are not as cost-effective and at a lower 
quality than providing those services in the community.
                                 ______
                                 
     Prepared Statement of the National Nursing Centers Consortium

    The NNCC (National Nursing Centers Consortium) appreciates the 
opportunity to submit written comments for the record regarding funding 
for nursing workforce and research programs in fiscal year 2006. This 
testimony does not include a monetary request. Instead, the NNCC 
requests that this subcommittee support the creation of a new grant 
program under the jurisdiction of the Health Resources and Services 
Administration's (HRSA's) Bureau of Health Professions (BHPr) that 
would enable the Centers for Medicare and Medicaid Services (CMS) to 
issue nurse-managed health centers (NMHCs) prospective payment 
reimbursement for their Medicare and Medicaid patients.

                            NNCC BACKGROUND

    The NNCC is the first nation wide association of nurse-managed 
health centers (NMHCs) in the United States. The organization currently 
represents over 100 NMHCs and individual members in 35 states. These 
centers are typically community-based non-profit organizations or are 
affiliated with university-based schools of nursing. The fact that many 
NNCC member centers are affiliated with schools of nursing allows them 
to act as teaching centers for new nurses entering the workforce. Along 
with fulfilling this important role with regard to nursing education, 
these centers also provide a host of primary care, health promotion and 
disease prevention services to medically underserved patients living in 
both urban and rural communities. NNCC member centers are run by nurse 
practitioners in partnership with the communities they serve. Many 
NMHCs have established community advisory boards that give the 
community a role in determining the future of the center and the 
services provided. Along with nurse-practitioners, these services may 
also be provided clinical nurse specialists, registered nurses, health 
educators, community outreach workers, health care students and 
collaborating physicians.
    The vision of the NNCC is to improve the health of communities 
through neighborhood-based health care services that are accessible, 
acceptable, and affordable. The mission is to strengthen the capacity, 
growth, and development of nurse-managed health centers to provide 
quality health care services to vulnerable populations and to eliminate 
health disparities in underserved communities.

       THE FINANCIAL CRISIS FACED BY NURSE-MANAGED HEALTH CENTERS

    Many NMHCs were initially established with the help of Nurse 
Practice and Retention grants from the BHPr. However, of the 70 
grantees that received Division of Nursing (DON), grants to establish 
nurse-managed health centers between 1993-2001, 27 or 39 percent have 
been forced to close. There are two main reasons why such a high 
percentage of DON funded NMHCs are no longer in operation. The first 
reason is that DON has shifted its funding priorities to nurses working 
in acute care settings, and is no longer funding NMHCs. The second 
reason is that even though a recent study conducted by the NNCC and 
sponsored CMS found that NMHCs are safety-net providers, they do not 
have access to the prospective payment system (PPS), which is offered 
to other safety-net providers such as Community Health Centers (CHCs) 
and Federally Qualified Health Centers (FQHCs).
    Under PPS, CHCs/FQHCs are able to offset the cost of caring for the 
uninsured because they receive a higher level of reimbursement for 
their Medicare and Medicaid patients. Even though NMHCs also see a high 
percentage of uninsured patients they cannot offset these costs through 
PPS. Without PPS, NMHCs are forced to depend on low capitation payments 
from managed care organizations (MCOs) and unreliable private grants. 
These payments and grants are not sufficient to cover the costs of 
operating NMHCs.
    For example, the average cost of caring for a Medicaid recipient at 
a NMHC is about $540 per year. However, Medicaid MCOs pay an average 
annual capitation payment of about $144 for each Medicaid patient. This 
means that capitation payments only cover about 26 percent of the costs 
associated with caring for Medicaid patients. NMHCs are forced to seek 
outside funding to recover the other 74 percent of these costs. 
Assuming the NMHC is able to cover these costs, the center must then 
take into account the costs associated with caring for their uninsured 
clients that are and not eligible for capitation payments. About 46 
percent of the clients receiving care at NNCC member centers around the 
nation are uninsured.
    In contrast, CHCs and FQHCs with access to PPS are able to recover 
about 89 percent of the costs associated with their Medicaid clients. 
This increased revenue allows these centers to direct a higher 
percentage of their resources to covering the cost of caring for their 
uninsured patients. In addition, CHCs receive an average payment of 
$250 for each uninsured patient. PPS helps to ensure that CHCs/FQHCs 
remain financially viable. If NMHCs do not also gain access to PPS 
reimbursement many more of these centers will be forced to close 
leaving thousands of medically underserved and uninsured clients 
without access to critical primary care services. Congress itself has 
recognized the tremendous financial challenges faced by NMHCs, and has 
published language, ``encouraging HRSA to provide alternative means to 
secure cost-based (or PPS) reimbursement for NMHCs'' (Senate Report 
108-345 (2005) p.37).
    Earlier this year the Senate Appropriations Committee praised NMHCs 
for the important work they are doing to reinforce America's health 
care safety-net. The committee stated, ``Nurse-Managed Health Centers 
(NMHCs) serve a dual function in strengthening the health care safety-
net by providing health care to populations in underserved areas and by 
providing the clinical experiences to nursing students that are 
mandatory for professional development.'' (Senate Report 108-345 (2005) 
p.37). If Congress truly values NMHCs this subcommittee should move to 
ensure that they have access to PPS reimbursement.
    NNCC requests that this subcommittee support the creation of a new 
grant program under which HRSA's BPHr would be allowed to distribute 
grants through which CMS could issue NMHCs PPS reimbursement. The most 
likely place for BPHr to find the authority to issue such grants would 
be under Title VIII of the Public Health Service Act (PHSA). Placing 
the new grant program under Title VIII of the PHSA would allow NMHCs to 
retain their emphasis on education and nursing workforce development. 
The NNCC also requests that any NMHCs, which previously received start 
up funding through DON, be automatically granted access to the newly 
created PPS. As mentioned above, there are still about 48 NMHCs in 
operation around the country which were established with the help of 
DON grants. However, shifting funding priorities at DON have left these 
centers in need of a stable source of funding. Granting them automatic 
access to PPS would make them financially viable and allow them to 
provide a full range of primary care, health promotion and disease 
prevention services to their patients. These centers record close to 
600,000 client encounters each year. Lastly, CHCs receive approximately 
$250 every year for each of their uninsured patients. BHPr should be 
given the discretion to provide similar grant funding to NMHCs that 
provide care to a high percentage of uninsured clients.

                               CONCLUSION

    We thank you for this opportunity to discuss the financial crisis 
faced by NMHCs and the significance of maintaining their financial 
sustainability. The NNCC is ready to assist policy makers in granting 
NMHCs PPS reimbursement, and has already drafted a model bill that 
would accomplish this goal. If the above steps are taken the NNCC 
believes the future of these important safety-net providers will be 
secure for years to come.
                                 ______
                                 
  Prepared Statement of the National Organizations Responding to AIDS 
                            (NORA) Coalition

          RECOGNIZING THE CHALLENGES AND LOOKING TO THE FUTURE

    The year 2005 brought with it a new Congress and a new 
Administration, yet for people living with, and at risk for, HIV and 
the organizations and agencies that serve them, things have remained 
much the same. For the fourth year in a row federal funding for the 
domestic HIV/AIDS portfolio remains level, and for the past two years 
funding has been reduced through funding rescissions. For the fifth 
consecutive year, the Centers for Disease Control and Prevention (CDC) 
maintains that there are 850,000-950,000 people living with HIV in the 
United States, despite a minimum of 40,000 new infections each year.\1\ 
And once again we find ourselves challenged to make a noticeable 
difference in the course of the HIV epidemic.
---------------------------------------------------------------------------
    \1\ Centers for Disease control and Prevention, ``Basic 
Statistics,'' 2003. <>
---------------------------------------------------------------------------
    Since 2000, the CDC has estimated that there were 850,000-950,000 
people living with HIV in the United States. Since that time, the CDC 
has reported that there are approximately 40,000 new HIV infections, 
and 15,000 deaths from AIDS related causes, in the United States each 
year.\2\ (This is a minimum number; recent data suggests that we may be 
actually seeing 43,000-44,000 additional new infections each year.) 
Thus, by simply doing the math it would seem that today, in 2005, there 
are roughly 125,000 more people living with HIV in this country then 
there were just five years ago--for a total of 975,000-1,075,000 HIV 
positive Americans. In other words, 1 million people.\3\
---------------------------------------------------------------------------
    \2\ Fleming, P., et al., ``HIV Prevalence in the U.S. 2000,'' 9th 
Conference on Retroviruses and Opportunistic Infections, February 2002.
    \3\ Ovadiya, Iris, and Tytel, Jessica, AIDS Action.
---------------------------------------------------------------------------
    Twenty-four years after the start of the HIV epidemic one million 
people are living in the United States with HIV--and that number 
continues to grow each and every day. Despite all the progress that has 
been made, from the development of new treatments and therapies to 
increased availability of testing and counseling services, the epidemic 
here at home is still far from over.
    The U.S. domestic response has historically been a patchwork of 
services, ranging from the work of community-based organizations to 
that of agencies of the federal government, each of which continues to 
play a critical role in addressing the epidemic. Since the beginning 
the thread that has bound all of these pieces together has been the 
financial support of Congress and the White House. Unfortunately, 
recent fiscal constraints have caused that thread to fray--to the point 
where some of the pieces are threatening to come undone. It is 
increasingly clear that unless we reengage ourselves in the real work 
of responding to this epidemic we will no longer be able to maintain 
the public health systems that have until now have been the true 
successes in addressing HIV in the United States.
    Of special note, of the 1 million people who are currently living 
with HIV in the United States, CDC and the Health Resources and 
Services Administration (HRSA) estimate that roughly one half are 
accessing regular medical care.\4\ On one level that is a very 
important accomplishment. 500,000 people are receiving the live-saving 
treatment and medical support that they need because our government 
made an investment and a commitment to help through the establishment 
of the Ryan White Comprehensive AIDS Resources Emergency (CARE) Act and 
through the commitment of additional resources to existing programs. 
However, the fact remains that the other half--another 500,000--are not 
in care, either because they are unaware of their HIV status or because 
of financial and/or other barriers that are keeping them from getting 
the care and treatment that they need. This grim statistic has remained 
unchanged for the past five years. The challenge before us now is to 
find a way to tip the balance.
---------------------------------------------------------------------------
    \4\ Fleming, P., et al., ``HIV Prevalence in the U.S. 2000,'' 9th 
Conference on Retroviruses and Opportunistic Infections, February 2002.
---------------------------------------------------------------------------
    If we are going to provide care and support services for those 
500,000 Americans currently not in care we must first face up to the 
reality of the challenge that lies before us. Most of the programs 
within the domestic federal HIV portfolio have been level-funded and/or 
cut for the past four fiscal years. Many are now facing their lowest 
funding levels in recent memory--despite the fact that they are seeing 
an increasing demand for services. We are now finding ourselves 
straining to meet the needs of the 500,000 we already serve, all the 
while aware of the need to reach an additional 500,000 whose needs we 
have not even begun to assess or address. Despite all of our best 
efforts we are still not reaching the people who need us most. Without 
access to testing and counseling, and subsequently care and treatment, 
these people remain unaware of the realities of their HIV infection, 
and thus unable to maintain their own health and prevent further 
transmission of the virus. This is simply unacceptable.
    Both CDC and HRSA have recently identified the half a million HIV 
positive people not in care as a top priority for their HIV programs. 
Beginning with the 2000 reauthorization of the Ryan White CARE Act, 
HRSA has focused attention on what it has termed ``unmet need,'' 
individuals who are HIV positive and aware of their status, but not in 
care. CARE Act grantees have received instructions from HRSA to 
prioritize this population in the delivery of services in an attempt to 
successfully connect these individuals to care. However, no additional 
resources have been allocated to grantees for this task, and many 
report that they are already overburdened by their current client load. 
For example, in the Washington, D.C. metro area newly diagnosed HIV 
positive clients are being placed on 3 month long waiting lists for 
doctor's appointments.
    In 2003, CDC launched Advancing HIV Prevention (AHP), a new 
initiative ``aimed at reducing barriers to early diagnosis of HIV 
infection and, if positive, increasing access to quality medical care, 
treatment, and ongoing prevention services.'' \5\ One of the primary 
goals of this national initiative is to increase access to HIV 
counseling, testing, and referral to care. Since the first funds were 
awarded in 2003, AHP has shown success in linking people to testing 
through the use of new rapid test technologies; however, it remains to 
be seen whether or not the CDC can successfully link these people to 
care--and whether or not HRSA's already overburdened care system can 
maintain them in services.
---------------------------------------------------------------------------
    \5\ Centers for Disease Control and Prevention, ``Advancing HIV 
Prevention: New Strategies for a Changing Epidemic,'' September 2003. 
<>
---------------------------------------------------------------------------
    Last year NORA chose to focus on building upon our past successes. 
This year we must look to what we still have left to do. The AHP and 
unmet need initiatives are working, but we can not expect them to be 
the definitive solution. The HIV epidemic in this country continues to 
evolve, and we continue to face unanticipated policy and program 
challenges. In the past year alone we have seen the initial phases of 
implementation of the Medicare Modernization Act, the expansion of 
rapid testing technologies, and emerging concerns about the Food and 
Drug Administrations (FDA) drug approval process. At the same time the 
Department of Health and Human Services has committed itself to the 
goal of reducing by half annual HIV infections in this country by 2010, 
after realizing that the 2005 goal was out of reach. The federal 
government must commit to fund, manage, and monitor the domestic 
response, or else we will find ourselves falling even farther behind in 
our response to the epidemic.
    The challenge before us today is significant, but it is not 
insurmountable. If we commit to funding that truly meets the needs of 
people living with, and at risk for, HIV infection then we can change 
the course of the epidemic.
    We know how to provide care.
    We know what it takes to link people to medical treatment.
    We know how to support its communities living with HIV.
    Now is the time to turn knowledge into action.
    The chart that follows is NORA's funding recommendations for fiscal 
year 2006.

                                       NORA FISCAL YEAR 2006 APPROPRIATIONS REQUESTS FOR FEDERAL HIV/AIDS PROGRAMS
--------------------------------------------------------------------------------------------------------------------------------------------------------
                                                                                 President's                         Fiscal year 2006
            Program               Fiscal yeary 2006 need   Fiscal year 2005    fiscal year 2006     Change from            NORA           Change from
                                                             appropriation         request        fiscal year 2005   recommendations    fiscal year 2005
--------------------------------------------------------------------------------------------------------------------------------------------------------
 DEPARTMENT OF HEALTH AND HUMAN
            SERVICES

Minority HIV/ AIDS Initiative    $855 million...........  $399 million \1\..  $399 million.....  .................  $610 million.....  +$411 million
 (To be added across multiple
 HHS programs and included in
 fiscal year 2002 program
 totals as indicated).
ACF: Runaway and Homeless Youth  .......................  104 million.......  114 million......  +$10 million.....  140 million......  +36 million
 Act Programs.
Agency for Healthcare Research   .......................  319 million.......  319 million......  .................  440 million......  +121 million
 and Quality.
CDC: Total--HIV, STD, TB line..  2.33 billion...........  961.2 million.....  957.3 million....  -4 million.......  2.33 billion.....  +1.27 billion
CDC: HIV Prevention and          .......................  662.6 million.....  686.6 million....  -4 million.......  1.5 billion......  +813.4 million
 Surveillance.
CDC: STD Prevention............  .......................  159.7 million.....  159.7 million....  .................  351 million......  +191.3 million
CDC: TB Prevention.............  .......................  138.9 million.....  138.9 million....  .................  287.3 million....  +148.4 million
CDC: Viral Hepatitis             .......................  17.36 million.....  17.36 million....  .................  100.24 million...  +82.88 million
 (Infectious Disease Control
 line).
CDC: DASH (Chronic Disease       .......................  56.75 million.....  56.76 million....  +0.1 million.....  88.25 million....  +31.49 million
 Prevention and Health
 Promotion line).
FDA............................  .......................  1.45 billion......  1.5 billion......  +50 million......  1.57 billion.....  +116 million
HRSA: Ryan White CARE Act Total  3.2 billion............  2.048 billion.....  2.058 billion....  +10 million......  2.56 billion.....  +513 million
Title I........................  .......................  610 million.......  610 million......  .................  725 million......  +115 million
Title II: Care.................  .......................  334 million.......  334 million......  .................  384 million......  +50 million
Title II: ADAP.................  1.5 billion (non-add)..  787 million.......  797 million......  +10 million......  1.09 billion.....  +303 million
Title III......................  .......................  196 million.......  196 million......  .................  236.6 million....  +41 million
Title IV.......................  .......................  72.53 million.....  72.53 million....  .................  113.25 million...  +40.72 million
Part F: AETCs..................  .......................  35 million........  35 million.......  .................  45 million.......  +10 million
Part F: Dental Reimbursement...  .......................  13.3 million......  13.3 million.....  .................  19 million.......  +5.7 million
HRSA: Consolidated Health        .......................  1.733 billion.....  2.038 billion....  +304.2 million...  2.038 billion....  +304.2 million
 Centers.
HRSA: Title V..................  .......................  724 million.......  724 million......  .................  755 million......  +31 million
HRSA: Title X..................  .......................  286 million.......  286 million......  .................  350 million......  +66 million
Indian Health Service: HIV/AIDS  .......................  2.68 million......  2.79 million.....  +0.1 million.....  10 million.......  +7.32 million
 Program.
NIH Office of AIDS Research....  3.327 billion..........  2.92 billion......  2.93 billion.....  +12 million......  3.1 billion......  +200 million
Office of the Secretary: Office  5 million..............  ..................  .................  .................  2 million........  +2 million
 of HIV/AIDS Policy.
SAMHSA: Center for Substance     .......................  1.78 billion......  1.78 billion.....  .................  1.85 billion.....  +71 million
 Abuse Treatment Block Grant
 \2\.
SAMHSA: Center for Substance     .......................  422.4 million.....  447.1 million....  +24.7 million....  472 million......  +50 million
 Abuse Treatment--other.
SAMHSA: Center for Substance     .......................  198.7 million.....  184.3 million....  -14.4 million....  210 million......  +11 million
 Abuse Prevention \3\.
SAMHSA: Mental Health Block      .......................  432.8 million.....  432.8 million....  .................  471.5 million....  +38.9 million
 Grant \4\.
SAMHSA: Center for Mental        .......................  176.7 million.....  144.1 million....  -32.6 million....  191.8 million....  +15.1 million
 Health Services--other \4\.
SAMHSA: GBHI...................  .......................  40.1 million......  34.4 million.....  -5.7 million.....  42.5 million.....  +1.7 million
SAMHSA: PATH...................  .......................  54.8 million......  54.8 million.....  .................  59.8 million.....  +5 million

 DEPARTMENT OF EDUCATION (DOE)

Protection and Advocacy for      .......................  16.6 million......  16.6 million.....  .................  22 million.......  +5.4 million
 Human Rights.

DEPARTMENT OF HOUSING AND URBAN
       DEVELOPMENT (HUD)

HOPWA..........................  2.8 billion............  282 million.......  268 million......  -14 million......  385 million......  +103 million
McKinney-Vento Homelessness      .......................  1.241 billion.....  1.44 billion.....  +199 million.....  1.572 billion....  +331 million
 Assistance Grant Program.

    GLOBAL HIV/AIDS PROGRAMS

President's Emergency Plan for
 AIDS Relief (PEPFAR)

HIV/AIDS Programs..............  6.7 billion............  2.9 billion.......  3.16 billion.....  +265 million.....  4.61 billion.....  +1.7 billion

Global Fund to Fight AIDS,
 Tuberculosis and Malaria (non-
 add)

Global Fund....................  1.5 billion............  435 million.......  300 million......  -135 million.....  1.5 billion......  +1.06 billion
--------------------------------------------------------------------------------------------------------------------------------------------------------
\1\ NOTE.--All fiscal year 2004 amounts include the .80 percent rescission.
\2\ The numbers in this chart reflect the entire budget of SAMHSA for Substance Abuse Treatment; HIV/AIDS programs are included in this total.
\3\ The numbers in this chart reflect the entire budget of SAMHSA for Substance Abuse Prevention; HIV/AIDS programs are included in this total.
\4\ The numbers in this chart reflect the entire budget of SAMHSA for Mental Health Services; HIV/AIDS programs are included in this total.

     Prepared Statement of the North American Brain Tumor Coalition

    I am Gary L. Kornfeld, a nine-year survivor of a grade 3 
oligoastrocytoma and Chair of the North American Brain Tumor Coalition 
(NABTC). On behalf of the Coalition, I am pleased to offer these 
comments regarding brain tumor research for the record of the Labor, 
Health and Human Services, and Education Appropriations Subcommittee. 
The NABTC, a network of 12 brain tumor organizations, is dedicated to 
improving treatments for brain tumors and ensuring individuals with 
brain tumors access to high quality care. The volunteers who comprise 
the NABTC are survivors, family members, friends, and caregivers, and 
we know firsthand the devastating effects that brain tumors can have. 
We are working hard to reduce the suffering from brain tumors and 
improve the outlook for all who receive this diagnosis.
    Each year, approximately 190,000 people in the United States and 
10,000 in Canada will be diagnosed with a primary or metastatic brain 
tumor. Approximately 40,000 individuals in the United States will be 
diagnosed with primary brain tumors; of this total, more than 18,000 
will be diagnosed with malignant brain tumors. Brain tumors are a 
leading cause of death from childhood cancer, accounting for almost a 
quarter of cancer deaths in children up to 19 years of age. Brain 
tumors are the second leading cause of cancer death in young adults 
ages 20-39.
    These numbers, as frightening as they are, do not convey the 
complete story. The treatment of brain tumors is very difficult, and 
factors that contribute to these treatment challenges are the location 
of these tumors and the fact that there are more than 120 different 
kinds of tumors. Standard therapies for brain tumors include surgery, 
radiation therapy, and chemotherapy, used either individually or in 
combination.

                      RECENT ADVANCES IN TREATMENT

    There have been recent advances in the treatment of glioblastoma 
multiforme (GBM), or grade IV malignant glioma, which usually causes 
death in a year. Researchers have found that concurrent administration 
of a chemotherapy drug, temozolomide, and radiation therapy results in 
a clinically meaningful survival benefit of two and one-half months for 
newly diagnosed glioblastoma patients.
    These findings were published in the New England Journal of 
Medicine on March 10, 2005.\1\ Temozolomide with radiation can be a 
very significant development for patients with GBM, and the brain tumor 
community applauds this development. However, much more must be done to 
extend and improve the lives of those affected by brain tumors. 
Progress against brain tumors still comes much too slowly.
---------------------------------------------------------------------------
    \1\ Stupp, et al., ``Radiotherapy Plus Concomitant and Adjuvant 
Temozolomide for Glioblastoma,'' New England Journal of Medicine, March 
10, 2005.
---------------------------------------------------------------------------
    The NABTC believes treatment strides will come through an enhanced 
investment in brain tumor research and improved dissemination of 
information about the best available care for brain tumors. Researchers 
in the Glioma Outcomes Project recently reported troubling gaps in care 
of individuals with brain tumors, suggesting that more work needs to be 
done to guarantee that the best possible therapies are available to all 
with brain tumors.\2\
---------------------------------------------------------------------------
    \2\ Chang, et al., ``Patterns of Care for Adults With Newly 
Diagnosed Malignant Glioma,'' Journal of the American Medical 
Association, February 2, 2005.
---------------------------------------------------------------------------
             ENHANCE THE INVESTMENT IN BRAIN TUMOR RESEARCH

    In 2000, the National Cancer Institute (NCI) and National Institute 
of Neurological Disorders and Stroke (NINDS) published the report of a 
brain tumor research advisory panel, called the Brain Tumor Progress 
Review Group. This report included an aggressive and thoughtful plan 
for moving brain tumor research and treatments forward. In 2000, the 
NABTC endorsed the Progress Review Group plan and urged implementation 
of its key research recommendations. In 2005--half a decade after the 
report's publication--the NABTC finds that the report still describes a 
valid and vital plan for brain tumor research. While the continuing 
relevance of the report is in part a testament to the vision of the 
Progress Review Group, it is primarily a testament to the troubling 
lack of progress in brain tumor research and treatment and the failure 
to implement the report's recommendations.
    To advance brain tumor research, the NABTC recommends that:
  --NCI and NINDS implement the recommendations of the Brain Tumor 
        Progress Review Group. To ensure that we do not look back from 
        2010 and observe limited progress on the Progress Review Group 
        plan, the NABTC requests that NCI and NINDS submit to Congress 
        a brain tumor research plan, including timelines and a budget 
        for implementation of the PRG report.
  --The Directors of NCI and NINDS appoint leaders of their extramural 
        brain tumor programs without delay. Strong scientific 
        management is necessary to ensure that the nation's financial 
        investment in brain tumor research is utilized as effectively 
        as possible. Extramural research coordinators should be 
        appointed at each institute to ensure that there is proper 
        leadership on brain tumor research issues.
  --Congress provide adequate funding for existing brain tumor research 
        efforts. There are several structures or systems for clinical 
        research on brain tumors, including the brain tumor consortia 
        and the brain tumor specialized programs of research 
        significance (SPOREs), but these programs are not adequately 
        funded to allow investigation of all promising brain tumor 
        treatments and to ensure correlative studies as part of trials.
  --NINDS and NCI convene a special workshop on brain tumor research. 
        Brain tumor research is an area where cross-disciplinary 
        research approaches are absolutely critical, and a workshop on 
        a cutting-edge brain tumor research topic would likely 
        stimulate innovative research efforts. A workshop is an 
        activity that could be undertaken by NINDS in collaboration 
        with NCI.
    For individuals with brain tumors and their families, friends, and 
caregivers, the NABTC urges a greater sense of urgency among the 
leaders of NCI and NINDS regarding brain tumor research.

           ELIMINATE THE TWO-YEAR WAITING PERIOD FOR MEDICARE

    Although we realize Medicare is not in the jurisdiction of this 
Subcommittee, we nevertheless would like to direct your attention to 
important legislation, introduced by Senator Jeff Bingman (D-NM) and 
Representative Gene Green (D-TX), that would eliminate the two-year 
waiting period for Medicare benefits for those who have established 
eligibility for Social Security Disability benefits. For many 
individuals with brain tumors, the current 24-month waiting period can 
result in delays in access to care that extends or improves life.
    Thank you again for the opportunity to offer this brief statement 
on brain tumor research and care.
                                 ______
                                 
           Prepared Statement of the Oncology Nursing Society

    The Oncology Nursing Society (ONS) appreciates the opportunity to 
submit written comments for the record regarding funding for cancer and 
nursing related programs in fiscal year 2006. ONS, the largest 
professional oncology group in the United States composed of more than 
31,000 nurses and other health professionals, exists to promote 
excellence in oncology nursing and the provision of quality care to 
those individuals affected by cancer. As part of its mission, the 
Society honors and maintains nursing's historical and essential 
commitment to advocacy for the public good.
    This year more than 1.37 million Americans will be diagnosed with 
cancer and more than 570,000 will lose their battle with this terrible 
disease. Despite these grim statistics, significant gains in the War 
Against Cancer have been made through our nation's investment in cancer 
research and its application. Research holds the key to improved cancer 
prevention, early detection, diagnosis, and treatment, but such 
breakthroughs are meaningless unless we can deliver them to all 
Americans in need. Recent studies have reported 126,000 registered 
nurse vacancies in hospitals and 13,900 registered nurse vacancies in 
nursing homes. These statistics create a sizeable barrier to ensuring 
that all people benefit from breakthroughs in cancer research.
    To ensure that all people with cancer have access to the 
comprehensive, quality care they need and deserve, ONS advocates on-
going and significant federal funding for cancer research and 
application, as well as funding for programs that help ensure an 
adequate oncology nursing workforce to care for people with cancer. The 
Society stands ready to work with policymakers at the local, state, and 
federal levels to advance policies and programs that will reduce and 
prevent suffering from cancer and sustain and strengthen the nation's 
nursing workforce.

    SECURING AND MAINTAINING AN ADEQUATE ONCOLOGY NURSING WORKFORCE

    Over the last 10 years, the setting in which treatment for cancer 
is provided has changed dramatically. An estimated 80 percent of all 
Americans receive cancer care in community settings including cancer 
centers, physicians' offices, and hospital outpatient departments. 
Treatment regimens are as complex, if not more so, than regimens given 
in the inpatient setting a few years ago. Oncology nurses are on the 
front lines in the provision of quality cancer care for individuals 
with cancer--administering chemotherapy, managing patient therapies and 
side-effects, working with insurance companies to ensure that patients 
receive the appropriate treatment, providing counseling to patients and 
family members, and engaging in myriad other activities on behalf of 
people with cancer and their families.
    Overall, age is the number one risk factor for developing cancer. 
Approximately 77 percent of all cancers are diagnosed at age 55 and 
older. Currently, Medicare beneficiaries account for more than 50 
percent of all cancer diagnoses and 64 percent of cancer deaths. Over 
the next 10 to 15 years the number of Medicare beneficiaries with 
cancer is estimated to double while more than 1.1 million registered 
nursing vacancies will need to be filled by 2012 to meet growing 
patient demand and replace retiring nurses. With an increasing number 
of people with cancer needing high quality health care, coupled with an 
inadequate nursing workforce, our nation could quickly face a cancer 
care crisis of serious proportion with limited access to quality cancer 
care, particularly in traditionally underserved areas. A study in the 
New England Journal of Medicine found that nursing shortages in 
hospitals are associated with a higher risk of complications--such as 
urinary tract infections and pneumonia, longer hospital stays, and even 
patient death. Without an adequate supply of nurses, there will not be 
enough qualified oncology nurses to provide the quality cancer care to 
a growing population of people in need and patient health and well 
being could suffer.
    Further, of additional concern is that our nation also will have a 
shortage of nurses available and able to conduct cancer research and 
clinical trials. With a shortage of nurses in cancer research, the War 
against Cancer will take longer because of unfulfilled staffing needs 
coupled with the reality that in some practices and cancer centers 
resources could be funneled away from cancer research to pay for the 
hiring and retention of oncology nurses to provide direct patient care. 
Without a sufficient supply of trained, educated, and experienced 
oncology nurses, our nation will falter in its delivery--or 
application--of the benefits from our federal investment in research.
    ONS has joined with others in the nursing community in advocating 
$210 million as the fiscal year 2006 funding level necessary to support 
implementation of the Nurse Reinvestment Act and the range of nursing 
workforce programs housed at the U.S. Health Resources and Services 
Administration (HRSA). Enacted in 2002, the Nurse Reinvestment Act 
included new and expanded initiatives, including loan forgiveness, 
scholarships, career ladder opportunities, and public service 
announcements to advance nursing as a career. Despite the enactment of 
this critical measure, HRSA fails to have the resources necessary to 
meet the current and growing demands for our nation's nursing 
workforce. For example, in fiscal year 2004 HRSA received 4,873 
applications for the Nurse Education Loan Repayment Program, but only 
had funding to award 857--a rate of 17.6 percent. Also in fiscal year 
2004, the agency received 8,806 applications for the Nursing 
Scholarship Program, but only could fund 126--a rate of 1.4 percent. 
Further exacerbating the current situation is that nursing programs 
turned away more than 125,000 qualified students last year, in part due 
to a shortage of faculty. If funded sufficiently, the components and 
programs of the Nurse Reinvestment Act would help address the multiple 
factors contributing to the nationwide nursing shortage, including the 
shortage of faculty, decline in nursing student enrollments, and poor 
public perception of nursing as a viable and worthwhile profession.
    ONS strongly urges Congress to provide HRSA with a minimum of $210 
million in fiscal year 2006 to ensure that the agency has the resources 
necessary to fund a higher rate of Nurse Education Loan Repayment and 
Nursing Scholarship applications as well as implement other essential 
endeavors to sustain and boost our nation's nursing workforce. Nurses--
along with patients, family members, hospitals, and others--have joined 
together in calling upon Congress to provide this essential level of 
funding. One Voice Against Cancer (OVAC)--a collaboration of more than 
45 national nonprofit organizations representing millions of 
Americans--has added a request of $210 million for the Nurse 
Reinvestment Act funding to its fiscal year 2006 appropriations 
advocacy agenda. ONS and its allies have serious concerns that without 
full funding, the ``Nurse Reinvestment Act'' will prove an empty 
promise; the current and expected nursing shortage will worsen and 
people will not have access to the quality cancer care they need and 
deserve.

 BOOST OUR NATION'S INVESTMENT IN CANCER PREVENTION, EARLY DETECTION, 
                             AND AWARENESS

    Approximately two-thirds of cancer cases are preventable through 
lifestyle and behavioral factors and improved practice of cancer 
screening. Although the potential for reducing the human, economic, and 
social costs of cancer by focusing on prevention and early detection 
efforts remains great, our nation does not invest sufficiently in these 
strategies. While as a nation we spend almost a trillion dollars a year 
on our health care system, we only allocate about one percent of that 
amount for population-based prevention. By the year 2020, cancer and 
other chronic disease expenditures will reach one trillion dollars or 
80 percent of health care costs. The nation must make significant and 
unprecedented federal investments today to address the burden of cancer 
and other chronic diseases, and to reduce the demand on the healthcare 
system and diminish suffering in our nation both for today and 
tomorrow.
    As the nation's leading prevention agency, the Centers for Disease 
Control and Prevention (CDC) plays an important role in translating and 
delivering at the community level what is learned from research--
especially ensuring that those populations disproportionately affected 
by cancer receive the benefits of our nation's investment in medical 
research. Therefore, ONS joins with our partners in the cancer 
community--including OVAC--in calling on Congress to provide additional 
resources for physical activity, nutrition, and tobacco control 
programs and other cancer-related screening, prevention, and public 
health education efforts supported through the CDC to support and 
expand much-needed and proven effective cancer prevention, early 
detection, and risk reduction efforts. Specifically, ONS advocates the 
appropriation of $404 million in fiscal year 2006 for the Centers for 
Disease Control and Prevention's (CDC) comprehensive cancer, ovarian 
cancer, breast and cervical cancer early detection, cancer registries, 
prostate cancer, colorectal cancer, and skin cancer programs. ONS also 
urges an increase funding for the CDC's physical activity, nutrition, 
and tobacco-control programs to help reduce risk factors for developing 
cancer and other chronic diseases, diminish suffering from cancer, and 
decrease the demand on the healthcare system.
  --$250 million for the National Breast and Cervical Cancer Early 
        Detection Program;
  --$65 million for the National Cancer Registries Program:
  --$25 million for the Colorectal Cancer Prevention and Control 
        Initiative;
  --$25 million for the Comprehensive Cancer Control Initiative;
  --$20 million for the Prostate Cancer Control Initiative;
  --$5 million for the National Skin Cancer Prevention Education 
        Program;
  --$9 million for the Ovarian Cancer Control Initiative;
  --$5 million for the Geraldine Ferraro Blood Cancer Program;
  --$145 million for the National Tobacco Control Program; and
  --$70 million for the Nutrition, Physical Activity, and Obesity 
        Program.

            SUSTAIN AND SEIZE CANCER RESEARCH OPPORTUNITIES

    Our nation has benefited immensely from past federal investment in 
biomedical research at the National Institutes of Health (NIH). ONS has 
joins with the entire cancer community in advocating $30.1 billion for 
the NIH in fiscal year 2006. This will allow NIH to sustain and build 
on its research progress resulting from the recent NIH budget doubling 
effort while avoiding the severe disruption to that progress that would 
result from a minimal increase.
    Cancer research is producing extraordinary breakthroughs--leading 
to new therapies that translate into longer survival and improved 
quality of life for cancer patients. We have seen extraordinary 
advances in cancer research resulting from our national investment that 
have produced effective prevention, early detection and treatment 
methods for many cancers. To that end, ONS calls upon Congress to 
allocate $5.21 billion to the National Cancer Institute (NCI) in fiscal 
year 2006 to continue our battle against cancer.
    The National Institute of Nursing Research (NINR) supports basic 
and clinical research to establish a scientific basis for the care of 
individuals across the life span--from management of patients during 
illness and recovery to the reduction of risks for disease and 
disability and the promotion of healthy lifestyles. These efforts are 
crucial in translating scientific advances into cost-effective health 
care that does not compromise quality of care for patients. 
Additionally, NINR fosters collaborations with many other disciplines 
in areas of mutual interest such as long-term care for older people, 
the special needs of women across the life span, bioethical issues 
associated with genetic testing and counseling, and the impact of 
environmental influences on risk factors for chronic illnesses such as 
cancer. ONS joins with the nursing community in advocating an 
allocation of $160 million for NINR in fiscal year 2006.

                               CONCLUSION

    ONS stands ready to work with policymakers to advance policies and 
support programs that will reduce and prevent suffering from cancer 
this year and sustain and strengthen our nation's nursing workforce. 
Moreover, ONS maintains a strong commitment to working with Members of 
Congress, other nursing societies, patient organizations, and other 
stakeholders to ensure that the oncology nurses of today continue to 
practice tomorrow and that we recruit and retain new oncology nurses to 
meet the unfortunate growing demand that we will face as the baby boom 
generation ages. We thank you for this opportunity to discuss the 
funding levels necessary to ensure that our nation has a sufficient 
nursing workforce to care for the patients of today and tomorrow and 
that our nation continues to make gains in our fight against cancer.
                                 ______
                                 
           Prepared Statement of the Procter & Gamble Company

    Procter & Gamble appreciates the opportunity to provide testimony 
in support of funding for the Interagency Coordinating Committee on the 
Validation of Alternative Methods (ICCVAM) and pain and distress 
research under the jurisdiction of the Labor, Health and Human 
Services, Education and Related Agencies Subcommittee in fiscal year 
2006.
    As a leader in the development of alternatives to animal testing, 
P&G is committed to eliminating animal testing for products intended 
for human use. We are working on a global basis with governments and 
academia to eliminate regulations that require unnecessary animal 
testing and to promote the acceptance of alternatives. To date, P&G has 
devoted significant resources to this effort and helped to develop more 
than 50 proven alternative methods. Despite these advances, it is 
acknowledged that state-of-the-art science cannot replace animal 
research at present and far more research is needed, by governments, 
academia and the private sector, for the development, promotion and 
validation of alternative test methods.

  INTERAGENCY COORDINATING COMMITTEE ON THE VALIDATION OF ALTERNATIVE 
                            METHODS (ICCVAM)

    We were very pleased that Congress enacted Public Law 106-545 by 
unanimous voice vote in both chambers in 2000. This legislation, 
introduced by Senator Mike DeWine (R-OH) and Representatives Ken 
Calvert (R-CA) and Tom Lantos (D-CA), strengthened and made permanent 
the Interagency Coordinating Committee on the Validation of Alternative 
Methods (ICCVAM). The statute has already begun to enhance the federal 
government's capacity to evaluate and adopt chemical testing methods 
that are often faster, cheaper, and more scientifically sophisticated 
than current methods, as well as more responsive to the public's 
concerns about the welfare of animals used in toxicity testing. Public 
Law 106-545 has streamlined the process by which these better methods 
are validated and assessed, and has eased institutional barriers within 
federal agencies that discourage their use.
    ICCVAM performs an invaluable ``win-win'' function for regulatory 
agencies and stakeholders in industry, public health, and animal 
protection by assessing the suitability of new toxicological test 
methods that have interagency application. These new (and newly 
revised) methods include alternative methods that can limit animal use 
or suffering in testing. After appropriate independent peer review of a 
new test method, ICCVAM provides its assessment of the new test to the 
federal agencies that regulate the particular endpoint that the test 
measures. In turn, the federal agencies maintain their authority to 
incorporate the validated test method as appropriate for the agencies' 
regulatory mandates. This streamlined approach to assess the validation 
status of new test methods has reduced the regulatory burden of 
individual agencies, provided ``one-stop shopping'' for industry, 
animal protection, and public health advocates to consider test 
methods, and set uniform criteria for what constitutes a validated test 
method.
    ICCVAM arose from an initial mandate in the NIH Revitalization Act 
of 1993 for the National Institute of Environmental Health Sciences 
(NIEHS) to ``(a) establish criteria for the validation and regulatory 
acceptance of alternative testing methods, and (b) recommend a process 
through which scientifically validated alternative methods can be 
accepted for regulatory use.'' In 1994, NIEHS established an ad hoc 
ICCVAM to write a report that would recommend criteria and processes 
for validation and regulatory acceptance of toxicological testing 
methods that would be useful to federal agencies and the scientific 
community. Through a series of public meetings, interested stakeholders 
and agency representatives from 14 regulatory and research agencies 
developed NIH Publication No. 97-3981, Validation and Regulatory 
Acceptance of Toxicological Test Methods. This report has become the 
``sound science'' guide for consideration of new test methods by the 
federal agencies and interested stakeholders. After publication of the 
report, the ad hoc ICCVAM moved to standing status under the NIEHS' 
National Toxicology Program Interagency Center for the Evaluation of 
Alternative Toxicological Methods (NICEATM). Representatives from 
federal regulatory and research agencies have continued to meet, with 
advice from NICEATM's Scientific Advisory Committee and independent 
peer review committees, to assess the validation of new toxicological 
test methods.
    Since its inception, ICCVAM has conducted rigorous evaluations of 
several test methods and has concluded that these methods are 
scientifically valid, i.e., have been adequately validated, and are 
acceptable for specific purposes. These methods include Corrositex, 
Epiderm, Episkin, and Transcutaneous Epithelial Resistance assays for 
assessing skin corrosivity; the 3T3 NRU Phototoxicity assay for 
assessing phototoxicity; the Local Lymph Node Assay for assessing skin 
sensitization; and the Up and Down Method and various cytotoxicity 
assays for assessing acute systemic toxicity. In turn, the appropriate 
regulatory agencies have incorporated these methods into their 
regulatory practices.
    The open public comment process, input by interested stakeholders, 
and the continued commitment by various federal agencies have all 
enhanced the ICCVAM process. Now, under Public Law 106-545, ICCVAM is 
poised to go beyond its largely passive role of assessing the 
validation status of test methods that have been developed and 
validated by industry and others. ICCVAM should adopt a more proactive 
role in developing and validating promising tests methods in 
partnership with outside stakeholders, to ensure that a steady stream 
of new test methods are available for review and adoption by the 
federal government. Such a proactive stance and partnership with 
stakeholders will enable the federal government to better harness the 
potential of emerging technologies to meet the challenge of efficiently 
testing large numbers of chemicals with minimal cost in terms of money 
and animal lives. With a more proactive approach, ICCVAM could, for 
example, explore the potential of investigator-initiated and small 
business grant programs to further its mission.
    Adequate funding should be provided for ICCVAM to put the resources 
in place to ensure the federal government and industry have the best 
available tools with which to assess the toxic properties of chemicals 
in commerce. To accomplish this, we respectfully request an earmark of 
$3.6 million for fiscal year 2006 and the following Committee Report 
language:

    ``In order for the Interagency Coordinating Committee for the 
Validation of Alternative Methods (ICCVAM) to carry out its 
responsibilities under the ICCVAM Authorization Act of 2000, the 
Committee strongly urges NIEHS to strengthen the resources provided to 
ICCVAM for methods validation reviews in fiscal year 2006. ICCVAM and 
NIEHS activities must include up-front validation study design, 
execution, and review to ensure that new and revised test methods, non-
animal test methods, and alternative test methods (such as QSARs, 
mechanistic screens, high throughput assays, and toxicogenomics) are 
deemed scientifically valid before they are recommended or adopted for 
use by federal agencies or used in implementing the National Toxicology 
Program's Road Map and Vision for NTP's toxicology program in the 21st 
century.''

                       PAIN AND DISTRESS RESEARCH

    An estimated 40 percent of the National Institutes of Health (NIH) 
budget--or currently more than $11 billion--is devoted to some aspect 
of animal research. At this time, no funding is set aside specifically 
for research into alternatives that reduce the amount of pain and 
distress to which research animals are subjected, nor methods that 
replace or reduce the use of vertebrate animals in research. NIH may 
receive $28.8 billion in fiscal year 2006 if Congress fulfills the 
President's budget request. Out of this funding, we seek $2.5 million 
(0.009 percent) for research and development focused on identifying and 
alleviating animal pain and distress. In addition to our request for a 
specific funding amount, we also urge the Committee to specify in 
report language that this research should be conducted in conjunction 
with, or ``piggy-backed'' onto, ongoing research that already causes 
pain and distress. Infliction of pain and distress on additional 
animals is unnecessary, given the volume of existing research (we 
estimate a minimum of 20-25 percent of all animal research) that is 
believed to involve moderate to significant pain and/or distress.
    The large extent to which animals are used in federally-funded 
research underscores the importance of earmarking funds for pain and 
distress research. NIH has a statutory mandate to conduct or support 
research into alternative methods that produce less pain and distress 
in animals. This was specified in the NIH Revitalization Act of 1993 
regarding a plan for the use of animals in research. Earmarked funding 
will assist NIH in meeting this mandate. Additionally, researchers 
themselves often comment publicly at scientific meetings about the 
urgent need for funding in order to properly understand and mitigate 
pain and distress in research animals and to follow Animal Welfare Act 
and Public Health Service policy requirements to minimize pain and 
distress.
    It is well known that uncontrolled, undetected, and unalleviated 
pain and distress has adverse effects on animal welfare, which leads to 
adverse effects on the quality of science. Ultimately, the lack of 
information on pain and distress leads to misinterpretation of research 
results that could result in harmful effects in human beings when pre-
clinical animal research results are applied to humans in clinical 
trials.
    A 2001 survey conducted by an independent polling firm indicates 
that concern about animal pain and distress strongly influences public 
opinion about animal research in general. Seventy-five percent of the 
American public opposes research that causes severe animal pain and/or 
distress, even when it is health-related. Despite this public concern, 
NIH has failed to sponsor research and development aimed at determining 
how to minimize animal suffering and distress in the laboratory.
    During the past several years, our organization has been reviewing 
institutional policies and practices with respect to pain and distress 
in animal research. We have found that research institutions have 
inconsistent policies due to the lack of information on this subject, 
and that standards vary greatly from one institution to another. The 
federal standard for determining laboratory animal pain specifies that, 
if a procedure causes pain or distress to humans, it should be assumed 
to cause pain and distress to animals. Furthermore, while human 
experience can and should provide a useful guide in some cases, there 
are others in which humans are never subjected to the conditions facing 
laboratory animals. Information on pain and distress that animals 
themselves actually experience is important.
    Our nation takes pride in leading the world in biomedical research, 
yet we lag behind many other countries in our efforts to minimize pain 
and distress in animal subjects. For example, the United Kingdom, 
Sweden, Switzerland, Germany, the Netherlands and the European Union 
all have committed funds specifically for the ``three R's'' (replacing 
the use of animals, reducing their use, and refining research 
techniques to minimize animal suffering).
    We urge the Committee to make this small investment of $2.5 million 
to promote animal welfare and enhance the integrity of scientific 
research. We also respectfully request this accompanying committee 
report language:

    ``The Committee provides $2.5 million to support research and 
development focused on improving methods for recognizing, assessing, 
and alleviating pain and distress in research animals. No pain and 
distress should be inflicted solely for the purpose of this initiative, 
since the investigations can and should be conducted in conjunction 
with ongoing research that is believed to involve pain and distress 
under Government Principle IV of Public Health Service Policy, which 
assumes that procedures that cause pain and distress in humans may 
cause pain and distress in animals.''

    Again, we appreciate the opportunity to share our views regarding 
priorities for the Labor, Health and Human Services, Education and 
Related Agencies Appropriation Act of fiscal year 2006. We hope the 
Committee will be able to accommodate these modest requests that will 
benefit animals, enhance effectiveness of toxicological testing, and 
improve the quality of research. Thank you for your consideration.
                                 ______
                                 
  Prepared Statement of the Society for Animal Protective Legislation

    On behalf of the Society for Animal Protective Legislation (SAPL) 
and Doris Day Animal League I would like to discuss several important 
issues within the jurisdiction of this committee. In addition, SAPL 
endorses the funding request by the Doris Day Animal League for fiscal 
year 2006 to operate the National Institute of Environmental Health 
Sciences' (NIEHS) National Toxicology Program Interagency Center for 
the Evaluation of Alternative Toxicological Test Methods (NICEATM) for 
Interagency Coordinating Committee for the Validation of Alternative 
Methods (ICCVAM) activities for fiscal year 2006.

CRIMINAL ANIMAL CRUELTY CHARGES FILED AGAINST NIH'S ALAMOGORDO PRIMATE 
                                FACILITY

    For years, the NIH funded the New Mexico-based Coulston Foundation 
primate testing lab with millions of taxpayer-funded dollars despite 
the lab's continued violations of the Animal Welfare Act. Compliance 
with federal animal welfare laws is a requirement for receipt of 
federal funds. The Coulston situation resulted in unprecedented 
regulatory action by the U.S. Department of Agriculture, international 
media interest, and intense Congressional scrutiny. The NIH's actions 
at Coulston prompted the House Committee on Energy and Commerce to 
launch a broad investigation of the mismanagement of billions of 
dollars in taxpayer-funded grants by NIH.
    Under the intense pressure from Congress, the NIH eventually 
stopped funding the Coulston lab. The agency assumed ownership of the 
facility located on Holloman Air Force Base, renamed it the Alamogordo 
Primate Facility (APF), and in June 2001 awarded Charles River 
Laboratories with a 10-year, $42 million contract to operate the lab, 
which houses approximately 265 government-owned chimpanzees. The NIH is 
legally responsible for the ``day-to-day management'' of the APF 
including its ``associated animal activities.'' The APF is an 
intramural NIH lab and is listed under the agency's Animal Welfare 
Assurance.
    One would think that after the years of Coulston abuses--and the 
accompanying NIH malfeasance that prompted a Congressional 
investigation--the agency would be that much more careful to ensure 
that the lab it now directly owns and manages would comply with the 
most basic precepts of animal welfare and simple human decency.
    One would be wrong.
    In September 2004, New Mexico District Attorney Scot Key filed 
multiple counts of criminal animal cruelty, accusing the NIH's 
handpicked contractor, Charles River Laboratories, and APF Director, 
veterinarian Rick Lee, of institutional negligence in the deaths of two 
chimpanzees and the near-death of a third. The D.A.'s independent 
criminal investigation found that it was ``standard practice'' for 
Charles River to leave critically ill chimpanzees in the ``care'' of 
security guards after trained animal care staff repeatedly walked off, 
clocking out at the end of the workday around 4:00 p.m.
    Because the APF is a federal research facility, it is required to 
comply with the Animal Welfare Act, but the USDA has no jurisdiction to 
enforce it. In 2001, the New Mexico legislature, prompted by the 
continuing abuses at Coulston and the federal government's inability to 
stop them, amended the state's animal cruelty statute to remove the 
blanket exemption for research facilities.
    In September 2003, the NIH was informed that the D.A. had initiated 
a criminal investigation against Charles River; that APF Director Lee 
had illegally threatened employees with lie detector tests in an 
attempt to find out who had leaked information about the treatment of 
the chimpanzees; and that the allegations were worse than anything ever 
documented at the Coulston lab. On October 1, 2003, an ad hoc NIH 
consultant, veterinarian Thomas Butler, conducted a one-day site visit 
along with the NIH official, Dr. Raymond O'Neill, in charge of 
overseeing the contract with Charles River. Butler's ``site visit'' 
report--compiled in less than one day by an ad hoc NIH consultant with 
no law enforcement authority--was neither thorough nor an 
investigation. Indeed, it completely failed to address the heart of the 
criminal charges: Charles River's abandonment of the three 
chimpanzees--including Rex, who was unconscious and vomiting--to 
security guards. In stark contrast to the NIH consultant's report, 
multiple eyewitnesses named in the D.A.'s months-long independent 
criminal investigation corroborated the criminal charges.
    On March 23, 2005, New Mexico judge Jerry Ritter accepted Charles 
River's argument that it was engaged in the practice of veterinary 
medicine, and dismissed the charges; he issued no written opinion 
regarding the other legal technicalities. By making this argument, 
Charles River and the NIH have conceded that for them, the ``practice 
of veterinary medicine'' constitutes intentional and repeated 
abandonment of critically ill or injured chimpanzees to once-per-hour 
observation by untrained security guards.
    Charles River never denied the facts alleged by the D.A. in the 
criminal charges, and the judge's decision did not deny the merits of 
the case. For now, Charles River and the NIH are accountable to 
absolutely no legitimate law enforcement authority. Neither the D.A., 
the USDA, nor the New Mexico Veterinary Board have any jurisdiction 
over the APF. The only ``oversight'' is provided by the NIH--the very 
definition of a conflict of interest--whose malfeasance at this very 
same facility when it was operated by the Coulston Foundation prompted 
a Congressional investigation of the entire agency.
    After the years of abuse at Coulston, the situation at this 
government-owned facility descended into alleged criminal animal 
cruelty while the agency was paying Charles River millions of tax 
dollars annually, including $175,000 in maximum bonus incentives. 
Charles River and the NIH have never denied the cold, cruel facts 
alleged by the D.A. in criminal charges resulting from a months-long 
independent criminal investigation conducted by a 24-year police 
veteran.
    Charles River and the NIH cannot be allowed to evade their 
culpability by hiding behind legal technicalities, half-truths and the 
typical NIH whitewash. This small-town District Attorney was attempting 
to uphold the law and do the job that a $28 billion federal agency has 
refused to do. We urge Congress to step into this gaping void of 
oversight and hold accountable the perpetrators of this unconscionable 
cruelty and their violation of the most basic standards of simple human 
decency. Congress should continue to actively investigate NIH's 
mismanagement of the APM and hold public hearings into the situation.

 NIH FAILS TO ADDRESS THIS SUBCOMMITTEES CONCERN ON ILLEGALLY ACQUIRED 
                             DOGS AND CATS

    Approximately 90,000 dogs and cats are used for experimentation in 
the United States each year. The vast majority of these animals are 
obtained from breeders who raise the animals under controlled 
conditions and have extensive information on their genetic background 
and health and vaccination status. In addition, some dogs and cats are 
being bred for experimentation at research facilities like the 
University of Texas, and in some cases, inexpensive random type animals 
are purchased directly from animal pounds.
    Despite extensive documentation strongly discouraging the practice, 
some research facilities are foot-dragging by continuing to buy dogs 
and cats from random source dealers. These dealers, with a Class B 
license designation by the U.S. Department of Agriculture (USDA), are 
notorious for selling animals to laboratories that have been acquired 
illegally and for their widespread failure to comply with other minimum 
requirements under the Animal Welfare Act.
    The saga of C.C. Baird is a prime example of the problem. Baird was 
a licensed dealer who sold random source dogs and cats for 
experimentation for about 15 years. More than a year and a half ago, 
126 animals were seized by federal authorities because their health was 
in jeopardy. And shortly thereafter USDA finally filed charges against 
him for hundreds of violations of the Animal Welfare Act stating, ``The 
violations alleged in this complaint are of the utmost seriousness, and 
include severe mistreatment and neglect of a multitude of animals in 
respondents' custody, falsification of health certificates for dogs and 
cats that respondents sold to research facilities, multitudinous 
record-keeping deficiencies and instances of noncompliance with the 
barest standards of care, husbandry and housing for dogs and cats.'' 
The charges against Baird included failure to provide adequate 
veterinary care and illegal acquisition of animals.
  --Dog Dealer's Day of Reckoning: http://www.awionline.org/pubs/
        Quarterly/03-52-4/524p1011.htm
  --A Glimpse Behind the Kennel Door: http://www.awionline.org/pubs/
        Quarterly/04-53-3/533p16.htm
  --Random Source Dealer Surrenders: http://www.awionline.org/pubs/
        Quarterly/05-54-1/541p2.htm
    Despite all of this, several registered research facilities 
including the University of Missouri continued to purchase animals from 
him. Unless NIH gives proper direction, some institutions will continue 
to place a higher priority on a cheap, ready supply of dogs than 
ensuring that animals are legally acquired and properly cared for. 
Thankfully, Baird has finally been put out of business. In fact, less 
than 20 Class B dealers remain, but the problems will persist until 
their number is reduced to zero.
    NIH has told this Subcommittee that it is ``committed to ensuring 
the appropriate care and use of animals in research.'' However, NIH has 
left the decision of whether or not to buy dogs and cats from random 
source dealers ``to the local level on the basis of scientific need.'' 
NIH defends the use of Class B dealers arguing that these dealers are 
needed to obtain ``animals that may not be available from other 
sources, such as genetically diverse, older, or larger animals.'' In 
fact, in the rare circumstance that a researcher asserts the need for 
such animals, they can be obtained directly from pounds as noted 
previously.
    The distinction between non-purpose-bred animals from pounds versus 
Class B dealers must be made. By using Class B dealers (middlemen) 
instead of pounds, researchers are contributing to the problem. In 
their search to fill researchers' demands for ``genetically diverse, 
older or larger animals,'' random source dealers and their suppliers 
may be stealing pets from backyards and farms or they are acquiring 
animals through fraud by collecting animals offered ``free to a good 
home.''
    All animals used in research should be obtained from legitimate 
sources.
    Taxpayer dollars, in the form of NIH extramural grants, must not 
continue to fund purchase of dogs and cats from dealers whose modus 
operandi are pet theft, acquisition of pets by fraud, payments made 
under the table and other illegal activities. Proper oversight of NIH's 
dispersal of extramural grants is urgently needed. We respectfully 
request that this Subcommittee include the following language in the 
HHS appropriations bill: ``None of these funds shall be used for 
research which utilizes dogs and/or cats obtained from random source 
dealers.''
                                 ______
                                 
           Prepared Statement of the Tri-Council for Nursing

    The Tri-Council for Nursing is an alliance of four national nursing 
organizations--the American Association of Colleges of Nursing (AACN), 
the American Nurses Association (ANA), the American Organization of 
Nurse Executives (AONE), and the National League for Nursing (NLN). 
Focused on leadership and excellence in nursing, the Tri-Council 
represents the breadth of the nursing profession including practicing 
nurses, nurse executives, nurse educators, and nurse researchers.
    The Nursing Workforce Development Programs under Title VIII of the 
Public Health Service Act strive to meet the health needs of the nation 
by assuring an adequate supply and distribution of qualified nursing 
personnel. These Programs increase access to quality care through 
improved composition, diversity, and retention of the nursing 
workforce; improved quality of nursing education and practice; and the 
identification of and use of data, and program performance measures and 
outcomes to make informed decisions on nursing workforce issues. The 
Tri-Council for Nursing urges Congress to ensure that adequate funding 
is available to address the critical nursing shortage through the 
Nursing Workforce Development Programs authorized by Title VIII of the 
Public Health Service Act.
    This testimony highlights the fundamental importance of the Nursing 
Workforce Development Programs as they relate to an adequately prepared 
nursing workforce. As an example, we would like to bring the public 
health role of nurses and the vital services they are providing to this 
nation today to the forefront of your attention.
    Nurses are a critical, but often unrecognized, component of the 
federal medical response to major emergencies and disasters, both 
natural and manmade. In the case of a major emergency, nurses have and 
will continue to be called upon to assist with chemoprophylaxis (oral 
or injectable medications/vaccinations) of hundreds of thousands or 
millions of Americans. The Office of Public Health Preparedness at the 
Health Resources and Services Administration (HRSA) estimates that a 
population of 100,000 people attacked by biological weapons would 
require 200 personnel working 100 hours just to deliver 
chemoprophylaxis. This effort would require approximately 16,171 
trained persons for a city the size of New York. Nurses will also be 
called upon to assist with the planned use of ``special needs 
shelters'' during disasters. People in special needs shelters may 
include an insulin-dependent diabetic who requires frequent monitoring, 
epileptic persons with a history of unstable seizure activity, and 
persons with disabilities requiring assistance with activities of daily 
living.
    Today's nursing shortage is very real and very different from any 
experienced in the past. It is evidenced by acute shortages of 
registered nurses (RNs) who are adequately prepared to meet patient 
care needs in a changing health care environment across the country. 
Although applications and enrollments for nursing programs have 
increased due to the major marketing efforts of corporations and health 
care providers, a serious nursing faculty shortage prevents the 
expansion of nursing programs to educate the number of nurses needed 
now and in the future. Studies have shown that unless dramatic steps 
are taken, the supply of appropriately prepared nurses will fall far 
short of what is needed to meet the needs of a diverse population and 
that this shortfall will grow more serious over the next 20 years. 
Since RNs represent the largest portion of our health care workforce, 
the shortage threatens the very essence of our health care system.
    In February 2004, the Bureau of Labor Statistics reported that 
registered nursing would have the greatest job growth of all 
professions in the United States in the years spanning 2002 to 2012. 
During this ten-year period, health care facilities will need to fill 
more than 1.1 million RN job openings. HRSA projects that, absent 
aggressive intervention, the RN workforce will fall 29 percent below 
requirements by the year 2020.
    The increasing health care demands of an aging population and 
changes in the country's nursing work-force have combined to create a 
shortage unlike any other. A fundamental shift has occurred in the RN 
workforce over the last two decades. As occupational opportunities for 
young women have expanded, and the changing health care environment has 
increased stresses on nursing, the number of young people entering the 
profession has declined resulting in a steady and dramatic increase in 
the average age of the nurse. Today, the average working RN is more 
than 43 years old.

           NURSES--INCREASING ACCESS TO QUALITY PATIENT CARE

    Studies have shown that insufficient numbers of nurses contribute 
to medical errors, poor patient outcomes, and increased mortality 
rates. A study published in the May 30, 2002, New England Journal of 
Medicine reported that higher levels of nursing care correlate with 
better patient care. Another study published in the October 23, 2002, 
Journal of the American Medical Association found that among the 
surgical patients studied, a pronounced correlation existed between 
nursing shortages and both patient mortality and failure to rescue.
    By the year 2025, 68.3 percent of the current nursing workforce 
will be among the first of 78 million baby boomers reaching retirement 
age and enrolling in the Medicare program. By 2030, 20 percent of the 
population--70 million--will be older Americans, more than twice their 
number in 1999. The emerging complex health and social conditions of an 
aging population demonstrate the need for more and experienced nurses 
to care for this special population. Funding to support additional 
research and education in this area is needed.
    Nurses can increase the public's access to quality primary health 
care through advanced practice registered nurses (APRNs), RNs who have 
attained advanced expertise in the clinical management of health 
conditions. Typically, an APRN holds a master's degree with advanced 
didactic and clinical preparation beyond that of the RN. Practice areas 
include, but are not limited to, anesthesiology, family medicine, 
gerontology, pediatrics, mental health, and midwifery. APRNs include:
    Nurse Practitioners (NPs) who diagnose and treat common illnesses 
and injuries; provide immunizations; manage high blood pressure, 
diabetes, and other chronic problems; order and interpret lab tests; 
and counsel patients on adopting healthy lifestyles. Research confirms 
that NPs improve the public's access to high quality care at a cost 
savings to the system while a landmark study published in 2000 in the 
Journal of the American Medical Association indicates that NP quality 
of care is equal to that of physicians.
    Clinical Nurse Specialists (CNSs) who provide care in a range of 
specialty areas, such as oncology, neonatal, and obstetric/
gynecological nursing, pediatrics, and psychiatric/mental health while 
working in hospitals and other clinical sites. CNSs develop quality 
assurance procedures and serve as educators and consultants. An 
estimated 69,000 CNSs are currently in practice.
    Certified Nurse-Midwives (CNMs) who provide prenatal and 
gynecological care to normal healthy women; deliver babies in 
hospitals, private homes, and birthing centers; and continue with 
follow-up postpartum care. Of all visits to CNMs, 90 percent are for 
primary, preventive care that includes gynecologic care such as annual 
exams and reproductive health visits.
    Certified Registered Nurse Anesthetists (CRNAs) who administer more 
than 65 percent of all anesthetics given to patients each year, and are 
the sole anesthesia providers in approximately two-thirds of all rural 
hospitals.
    As more acute public health needs exist in our communities, nurses, 
through their professional qualifications and sheer numbers, are at the 
very core of the nation's public health infrastructure.
    ``Nurse managed centers'' (NMCs) play an important role in the 
health services delivery system and offer a unique approach to primary 
care that emphasizes health promotion and disease prevention, 
particularly in underserved communities. They often serve at-risk 
persons who might not otherwise receive health care. About half of all 
their patients are uninsured and many are unable to turn elsewhere for 
medical care. In the Philadelphia region, for example, nurses at nurse-
managed health centers see their patients almost twice as often as 
other providers see theirs; their patients are hospitalized 30 percent 
less and use the emergency department 15 percent less often than those 
patients of other health care providers. Unfortunately, NMCs often 
struggle or fail to remain financially viable; the centers themselves 
need a safety net to survive financially.
    The Nursing Workforce Development Programs of Title VIII provide 
the ability to maintain and expand the availability of a qualified 
nursing workforce and facilitate the integration of underrepresented 
populations into nursing.
    Section 811.--The Advanced Education Nursing Program--funds 
traineeships for individuals preparing to be nurse practitioners, nurse 
midwives, nurse administrators, and public health nurses. In addition, 
grants are awarded to nursing schools to support education and training 
of APRNs.
    Section 821.--The Nursing Workforce Diversity Program--funds grants 
to increase nursing education opportunities for individuals who are 
from disadvantaged backgrounds by providing student stipends, pre-entry 
preparation, and retention activities. These opportunities ensure a 
culturally diverse workforce to provide health care for a culturally 
diverse patient population.
    Section 831.--The Nurse Education, Practice and Retention Program--
provides grant support for academic and continuing education projects 
designed to strengthen the nursing workforce. Several of this program's 
priorities apply to quality patient care including developing cultural 
competencies among nurses and providing direct support to establishing 
or expanding NMCs in non-institutional settings to improve access to 
primary health care in medically underserved communities. It also 
serves to provide grants to eligible entities to improve retention of 
nurses and enhanced patient care.
    Section 846.--The Loan Repayment and Scholarship Programs--is 
divided into two primary components. The Nursing Education Loan 
Repayment Program assists individual registered nurses by repaying up 
to 85 percent of their qualified educational loans over three years in 
return for their commitment to work at health facilities with a 
critical shortage of nurses. Similarly, the Nurse Scholarship Program 
provides financial aid to individual nursing students in return for 
working a minimum of two years in a health care facility with a 
critical nursing shortage.
    Section 855.--The Comprehensive Geriatric Education Grant Program--
focuses on training, curriculum development, faculty development, and 
continuing education for nursing personnel caring for the elderly.

                      NURSES--EDUCATING THE FUTURE

    At nursing schools across the nation, a surge of qualified 
applicants, who could ease the worsening shortage of nurses, is being 
turned away because schools of nursing are suffering from a continuing 
and growing shortage of faculty. This situation is not expected to 
improve in the near term, since an adequate number of nurse educators 
are currently not in the education pipeline.
    The nursing faculty shortfall is driven by health care jobs that 
offer better pay than faculty positions and by fewer nurses pursuing 
the doctorate required for full-time teaching positions. Just as with 
the nursing workforce, the faculty is graying and a wave of retirements 
is expected about the same time when more care will be needed for aging 
baby boomers. An insufficient faculty was the top reason cited by 
nursing schools for not accepting all qualified applicants into entry-
level programs for the 2004-2005 academic year. Just as important as 
educational incentives are for future practicing nurses, the 
scholarships for doctoral students who will instruct the next 
generation of nurses are even more critical.
    Title VIII funding bolsters existing programs to increase the 
number of qualified nurse faculty.
    Section 846A.--The Nurse Faculty Loan Program--supports the 
establishment and operation of a loan fund within participating schools 
of nursing to assist RNs to complete their education to become nursing 
faculty. The Program provides a cancellation provision in which 85 
percent of the loan may be cancelled over four years in return for 
serving full time as faculty in a school of nursing.
    Section 811.--The Advanced Education Nursing Program--provides 
trainee support for individuals preparing to be nurse educators. These 
funds support master's and doctoral programs, combined RN/master's 
degree programs, and post-nursing master's certificate programs.

                                SUMMARY

    While the Tri-Council for Nursing is encouraged by a recent 
resurgence of interest in the nursing profession, we are concerned that 
the funding levels for the Title VIII--Nursing Workforce Development 
Programs are insufficient to assist qualified students to enter, 
advance, and remain within the nursing profession. The nursing shortage 
will continue to worsen if significant investments are not made in 
these Title VIII programs. Recent efforts have shown that aggressive 
and innovative strategies can help avert the impending nursing 
shortage--if they are adequately funded. The contributions of nurses in 
our health care system are complex and multifaceted, and are directly 
impacted by the level of federal funding that supports nursing 
programs.
                                 ______
                                 
       Prepared Statement of Patient Services Incorporated (PSI)

    PATIENT SERVICES INCORPORATED MEDICAL INSURANCE AND CO-PAYMENT 
           ASSISTANCE CASE MANAGEMENT PROGRAM FOR HEPATITIS C

    PSI believes that its 16 years of proven patient assistance and 
results can and will translate into providing successful solutions to 
two major challenges in healthcare policy that the United States is 
currently facing:
  --Providing standard comprehensive health insurance coverage for the 
        uninsured and the underinsured in this country.
  --Developing a public-private partnership to solving this problem in 
        light of the tightening budget constraints at the federal and 
        state government levels.
    With our goals and vision in mind, PSI would use the federal 
resources to further develop and augment the Medical Insurance and Co-
payment Assistance Case Management Program for Hepatitis C to save 
federal and state government resources in this era of fiscal austerity. 
PSI intends to do this by:
  --Assisting Medicaid eligible patients affected with the Hepatitis C 
        virus (HCV) by transitioning these patients into the private 
        insurance market. According to our research, 10 percent to 15 
        percent of the Hepatitis C patient population on Medicaid who 
        are responding positively to the Pegylated Alpha Interferon/
        Ribavirin Combination treatment regimen can return to work. A 
        positive response to the regimen can be defined as having such 
        a low amount of the virus in your cell system that the viral 
        load is undetectable. This portion of the population can re-
        enter the workforce, thus returning to the status of taxpayer 
        and transition off the Medicaid roles.
  --PSI will use a portion of the federal funds to purchase health 
        insurance premiums through State High-Risk policies, Guaranteed 
        Issue policies, and/or Open Enrollment policies for these 
        patients thus freeing up Medicaid dollars. These patients will 
        then be eligible to re-enter the workforce, and ultimately be 
        covered by an employer funded benefits package.
  --Assisting the segment of the Hepatitis C patient population not 
        eligible for Medicaid, such as those patients enrolled in the 
        Medicare program, state assistance programs, as well as those 
        patients underinsured or uninsured.
    --PSI can assist patients on Medicare by satisfying the co-payment 
            for the expensive, but life-altering treatment regiments.
    --PSI can assist those patients receiving treatments through state 
            assistance programs by transitioning them into the private 
            insurance market.
    --PSI can assist those patients who are uninsured and underinsured 
            by transitioning them into the private insurance market.
    Over the last 9 years, PSI has proven that as an organization it 
can be an effective steward of taxpayer's dollars. For a $1 million 
investment by the federal government, PSI believes it can assist 1,200 
to 1,500 patients. This investment could have the potential once fully 
implemented to save the federal and state governments $10 million a 
year.

Is your project a labor, health and human services, or education 
        request?
    Health and Human Services

Within the Labor, Health and Human Services, Education Appropriations 
        Bill, the specific account within which funding is sought
    Centers for Medicare and Medicaid Services (CMS): Research, 
Demonstration and Evaluation Program.

Amount Requested
    $1,000,000 for fiscal year 2006; $1,000,000 for fiscal year 2007; 
$1,000,000 for fiscal year 2008.

How, specifically the federal funds will be spent, if obtained?
    PSI asks Congress to establish a demonstration project through the 
Department of Health and Human Services, Centers for Medicare and 
Medicaid Services, which will assist Medicare and Medicaid eligible 
individuals, who are infected with the Hepatitis C virus (HCV) and 
desiring assistance, to identify and subsidize individual health 
insurance policies. By providing premium and co-payment assistance, PSI 
will save federal Medicare and Medicaid dollars.
    PSI will begin the Medical Insurance and Co-payment Assistance 
Management Program for Hepatitis C by the Summer of 2005.

Federal funding history of the organization
    This is the first year that Patient Services Incorporated has made 
a federal funding request.

List the amount state, local and private funds being used to support 
        the project. Indicate the proposed federal share of the project
    PSI is in the final stages of development of a co-payment 
assistance program with private sector industry. The industry support 
will provide PSI with funds to develop a disease management program for 
patients infected with Hepatitis C. This program would provide PSI with 
key funds to launch this pilot program, which would provide pharmacy 
co-payment assistance for the treatment regiment of Hepatitis C.
    The private funds provided to PSI will initially assist 100 
patients nationwide. PSI will also continue to reach out to other 
manufacturers of Hepatitis C treatments for further development of this 
program. The infusion of federal resources will assist in developing 
the PSI Medical Insurance and Co-payment Assistance Case Management 
Program for Hepatitis C into a more comprehensive program.
    Proposed federal share: $1 million per year, for 3 years.

Report language requested
    Recommend Report Language Centers for Medicare and Medicaid 
Services, Program Management of the Medicare and Medicaid Research, 
Demonstration and Evaluation program.
    The committee has included $1,000,000 for a demonstration project/
pilot program with Patient Services Incorporated of Midlothian, 
Virginia to save federal health care costs by subsidizing private 
health insurance coverage for individuals suffering from the Hepatitis 
C virus (HCV). The committee requests a report on the results of this 
unique and potentially cost-saving program.

Members of Congress are you working with on this request
    Senator John Warner (R-VA) and Senator George Allen (R-VA).
Please share any additional information you deem important
    Currently there is authorization for programs such as PSI's 
proposal under the following bills:
    (1) Centers for Medicare and Medicaid Research, Demonstration and 
Evaluation Program is an existing, statutory program.
    (2) The Medicare Modernization Act authorizes demonstration 
projects for innovative programs to reduce federal health care costs, 
and for chronic care improvement pilot projects.
    Pertinent background information and justification for this 
appropriations request:

Patient Services Incorporated Demonstration Project/Pilot Program: 
        Covering the Uninsured with Chronic and Catastrophic Illness
    PSI is a national, non-profit organization committed to supporting 
people with specific chronic illnesses and conditions by locating and 
securing solutions with health insurance by paying health insurance 
premiums and pharmacy co-payments in order to help improve their 
quality of life. PSI's vision for the future is to become the premier 
national non-profit organization in developing strategies and programs 
through collaboration with federal and state governments, corporations 
and individuals to address gaps in public and private health care 
coverage.
    PSI asks Congress to establish a demonstration project through the 
Department of Health and Human Services, Centers for Medicare and 
Medicaid Services, which will assist Medicare and Medicaid eligible 
individuals, who are infected with the Hepatitis C virus (HCV) and 
desiring assistance, to identify and subsidize individual health 
insurance policies. By providing premium and co-payment assistance, PSI 
will save federal Medicare and Medicaid dollars.

Background on PSI
    Founded in 1989, PSI has spent the last fifteen years working with 
patients from the chronic disease community. PSI currently assists 
patients nationwide with the expensive costs of seventeen chronic 
illnesses and acute conditions. A few examples are those with 
Hemophilia, Alpha 1, Rheumatoid Arthritis, Crohn's Disease, Immune 
Deficiencies, Psoriasis and Multiple Sclerosis. PSI saves families from 
becoming financially devastated when a member is diagnosed with an 
expensive chronic illness. The PSI model provides the means for 
patients to become insured and have choices of treatments and 
providers.
    Private contributors, foundations, and corporate sponsors donate 
resources to PSI. PSI uses these resources to help families avoid 
turning to government sponsored social service programs. Families are 
offered assistance based upon the severity of their medical and 
financial needs, which is determined through an application process, a 
procedure that is unique to PSI. PSI has developed a sliding scale 
formula specifically designed to capture the working middle class 
person, providing the family with a safety net from financial ruin and 
assuring a successful return to work outcome. PSI does this by working 
with patients to gain access to insurance through State High Risk 
Insurance Pools, Open Enrollment, and Guaranteed Issue health insurance 
policies. PSI also assists patients in maintaining COBRA policies for 
those who qualify. PSI is committed to working with the chronically ill 
to ensure that they have the resources to meet their specific and 
costly health care needs.
    PSI is in the unique position of tackling head-on the acute problem 
of locating and ultimately paying for health insurance for the 
uninsured population in the United States. Currently the United States 
Census Bureau reports that there are over 44 million Americans who have 
no health insurance for a time period of one year or more. However, 
over 80 million Americans are without health insurance for some period 
of time during any given year. PSI can assist individuals in both 
categories. Since 1996, PSI also has successfully worked with State 
Health Department Title V programs, such as, Children With Special 
Health Care Needs and Childrens Rehabilitative Services (Medicaid). The 
PSI model has saved the Commonwealth of Virginia over $12 million since 
1996 and the state of Kentucky over $5 million in program costs since 
2000.
    In 2002, the U.S. Department of Health and Human Services' Office 
of the Inspector General issued a positive opinion endorsing the PSI 
model of premium assistance and sanctioning the co-payment assistance 
for Medicare patients. The Centers for Medicare and Medicaid Services 
acknowledged in its recent 641 Replacement Drug Demonstration Project 
that charitable organizations, like PSI, can assist patients with the 
out of pocket expenses associated with certain replacement drugs.
    It is no secret the chronic illnesses are both financially and 
emotionally draining for patients and families to cope with. Treating 
chronic conditions also accounts for the largest percentage of spending 
within the Medicare budget. The costliest five percent of Medicare 
beneficiaries account for about half of all Medicare spending each 
year. PSI has developed programs to help many of the families afflicted 
by these costly diseases; their Medical Insurance and Co-payment 
Assistance Case Management Program for Hepatitis C holds a great deal 
of promise for individuals and families who are affected by this virus 
and the accompanying complications.

Hepatitis C
    The Hepatitis C virus (HCV) is a disease of the liver that has 
potentially fatal outcomes. In the majority of Hepatitis C cases, 
infection becomes chronic and slowly damages the liver over many years. 
During this time, the liver damage can lead to cirrhosis (scarring) of 
the liver, end-stage liver disease, and liver cancer. In the United 
States, Hepatitis C affects close to 4 million people, making the 
disease more prevalent than HIV/AIDS infection. The costs for providing 
care for patients with HCV-associated liver disease in the United 
States are estimated to range from $758 million to several billion 
dollars annually. Hepatitis C infections are expected to increase to 
10.8 million Americans in the next decade, leading to a major drain on 
government health resources and increased health costs.
    Hepatitis C can be treated; early diagnosis and treatment are 
crucial to being able to control the progression of the disease and 
reduce the chances of further liver damage. There are instances where 
the treatment has taken a protracted time to show any positive results 
in lowering the viral load of patients, and in certain cases the 
treatment may not change the progression of the disorder. Currently, 
the National Institutes of Health (NIH) recommends that Hepatitis C 
patients receive pegylated alpha interferon treatment in combination 
with the antiviral drug, Ribavirin. Three different agents are used in 
this treatment approach:
  --Alpha Interferons.--A protein made naturally by your body to boost 
        your immune system and to regulate other cell functions. All of 
        the currently approved treatments for chronic Hepatitis C 
        include some form of natural or synthetic alpha interferon.
  --Pegylated Alpha Interferon.--Made by attaching a large water-
        soluble molecule call polyethylene glycol (PEG) to the alpha 
        interferon molecule. These modified alpha interferons stay in 
        the body longer and studies show they are more effective in 
        producing a sustained viral response in patients with chronic 
        Hepatitis C.
  --Ribavirin.--An antiviral drug that is used with manufactured forms 
        of alpha interferon for the treatment of chronic Hepatitis C. 
        Ribravirin by itself has not been shown to be effective against 
        the Hepatitis C virus, but in combination with forms of alpha 
        interferon is a much more successful treatment than alpha 
        interferon alone.
    The Pegylated Alpha Interferon/Ribavirin Combination treatment 
regimen is expensive; according to the 2003 Red Book Update, the costs 
range from $24,000 to $48,000 for the drug alone. These costs do not 
include fees for administering the drugs, laboratory visits, and 
medical tests associated with HCV. Hepatitis C is an expensive chronic 
illness; PSI is able to work with the federal government to assist this 
community to ensure that it receives quality care in an economically 
efficient way.
                                 ______
                                 
           Prepared Statement of the Society for Neuroscience

                              INTRODUCTION

    Mr. Chairman and members of the subcommittee, I am Dr. Carol Barnes 
of the University of Arizona and President of the Society for 
Neuroscience (SfN). I am here today in my capacity as the President of 
SfN to urge your support of biomedical research. SfN represents the 
entire range of scientific research endeavors aimed at understanding 
the nervous system and translating this knowledge to the treatment and 
prevention of nervous system disorders. It fosters the broad 
interdisciplinarity of the field, which uses multiple perspectives to 
study the nervous system of organisms ranging from invertebrates to 
humans across various stages of development, maturation, and aging.

                 WHAT IS THE SOCIETY FOR NEUROSCIENCE?

    The Society for Neuroscience is a nonprofit membership organization 
of basic scientists and physicians who study the brain and nervous 
system. Neuroscience includes the study of brain development, sensation 
and perception, learning and memory, movement, sleep, stress, aging, 
and neurological and psychiatric disorders. It also includes the 
molecules, cells, and genes responsible for nervous system functioning 
and human behavior.
    The 36,000 members of SfN include basic researchers studying the 
many neuroscience disciplines and clinicians specializing in neurology, 
neurosurgery, psychiatry, ophthalmology, and related fields. In 1970, 
neuroscience barely existed as a separate discipline. Today, there are 
more than 300 training programs in neuroscience alone. The field of 
neuroscience has made startling discoveries that have transformed our 
understanding of the healthy brain and helped to deliver treatments of 
disorders affecting millions.

         NATIONAL INSTITUTES OF HEALTH'S NEUROSCIENCE BLUEPRINT

    The NIH Neuroscience Blueprint is a framework to enhance 
cooperation among 15 NIH Institutes and Centers that support research 
on the nervous system. Over the past 10 years, driven by the science, 
the NIH neuroscience Institutes and Centers have increasingly joined 
forces through initiatives and working groups focused on specific 
disorders. The Blueprint builds on this foundation, making 
collaboration an everyday part of how the NIH does business in 
neuroscience. By pooling resources and expertise, the Blueprint can 
take advantage of economies of scale, confront challenges too large for 
any single institute, and develop research tools and infrastructure 
that will serve the entire neuroscience community.
    Last year, the Blueprint participants developed a set of 
initiatives focused on tools, resources, and training with immediate 
impact because they would build on existing programs. These initiatives 
include an inventory of neuroscience tools funded by the NIH and other 
government agencies, enhancement of training in the neurobiology of 
disease for basic neuroscientists, and expansion of ongoing gene 
expression database efforts, such as the Gene Expression Nervous System 
Atlas (GENSAT).
    Advances in the neurosciences and the emergence of powerful new 
technologies offer many opportunities for Blueprint activities that 
will enhance the effectiveness and efficiency of neuroscience research. 
Blueprint initiatives for fiscal year 2006 will include systematic 
development of genetically engineered mouse strains of critical 
importance to research on the nervous system and its diseases and 
training in critical cross cutting areas such as neuroimaging and 
computational biology.
    Several of the most common causes of death and disability, as well 
as hundreds of rare disorders, affect the brain, spinal cord, or nerve 
cells in the eye, ear, or elsewhere in the body. The vast array of 
nervous system disorders encompasses mental illness, neurological 
disease, drug and alcohol abuse, chronic pain conditions, developmental 
disorders, and dementias of aging. Numerous problems of hearing, 
vision, and other senses also include a brain component, and are 
serious health issues.
    In fiscal year 2006, NIH intends to allocate $26 million, with $14 
million contributed by collaborating institutes and centers, for 
Blueprint initiatives as follows:
  --Neuromouse Project.--developing genetically engineered mouse 
        strains specifically for nervous system disease research;
  --Cross-Institute Neuroscience Training Programs.--training in 
        critical cross-cutting areas such as neuroimaging and 
        computational biology;
  --Neuroscience Core Grants.--supporting specialized, 
        interdisciplinary ``core'' centers that might focus on areas 
        such as animal models, cell culture, computer modeling, DNA 
        sequencing, drug screening, gene vectors, imaging, microarrays, 
        molecular biology, or proteomics and their applications to 
        neuroscience research;
  --Translation of Discoveries.--accelerating the translation of basic 
        neuroscience discoveries into better ways to treat and prevent 
        nervous system diseases; and
  --Analytical Methods and Conceptual Models.--spurring the development 
        of new analytical methods and conceptual models to study 
        disease and allow for increased coordination among public 
        education and outreach campaigns involving the brain and 
        nervous system.

                            ACCOMPLISHMENTS

    The Society for Neuroscience would like to thank you for your past 
support. In the last 10 years, funding from the NIH and the Department 
of Veterans Affairs has helped scientists make great progress in 
helping people in many areas, including:
    1. Bipolar disorder.--Also known as manic depression, bipolar 
disorder is a serious brain disease that causes extreme mood swings, 
from intense feelings of euphoria (mania) to deep depression. Past 
funding from NIH and the Department of Veterans Affairs has helped 
scientists make great progress in understanding bipolar disorders and, 
thus, in diagnosing and treating the illness. Using the latest brain 
imaging technologies, scientists have also discovered that brain 
function and structure in people with bipolar disorder differs markedly 
from that in people without the illness. Researchers have found a 
significant decrease in the size of the amygdala, a part of the brain 
that governs emotions, in people with bipolar disorder. Other studies 
have found a decrease in the density of gray matter in the brains of 
people with bipolar disorder. These and other exciting new findings are 
helping to pave the way for the design of new drugs that directly 
target specific genes or areas of the brain.
    2. Alzheimer's Disease & Normal Aging.--Alzheimer's disease, one of 
the most frightening memory-robbing disorders, hampers the lives of 
some 4 to 5 million older Americans, costing the United States at least 
$100 billion in medical care and lost productivity each year. 
Fortunately, NIH-funded research has helped to generate new treatments 
that can aid memory loss. These medications slow memory deterioration 
in some patients and allow others to resume normal lives. Additional 
gains can and must be made in the field of memory research in order to 
benefit a wider range of people, and to reduce the financial burden of 
care. Recent studies on animal models suggest that the outlook could 
improve with treatments that target brain mechanisms to enhance memory. 
Additionally, research into Alzheimer's disease and its effects on 
memory have also led to important advances in how memory can be 
optimized in normal aging. This would clearly benefit the remaining 
millions of Americans who are looking toward successful aging.
    3. Depression & Heart Disease.--Depression is a biologically based 
brain disorder that affects about 10 percent of Americans over the age 
of 18. Depressed people feel intensely sad and worthless and have a 
diminished sense of emotional well-being. Among other diseases such as 
alcoholism and stroke, people with depression have an increased risk 
for heart disease, particularly coronary artery disease. In otherwise 
healthy people, depression doubles the risk for coronary artery 
disease. Furthermore, for those with coronary artery disease, there is 
evidence that depression influences outcomes, particularly mortality, 
following a heart attack. Additionally, for those undergoing coronary 
artery bypass grafting, there is increasing evidence that depression is 
associated with poorer outcomes. Studies from Johns Hopkins University 
reveal that patients with severe depression are up to five times more 
likely to have poorer outcomes such as the return of chest pain, heart 
attacks, or death. Despite much progress in understanding the biology 
of depression in the past decade, much remains to be done. The 
mechanisms of the interaction between depression and outcomes with 
cardiac disease are not clear. Nor is it known if treatment of 
depression, even mild depression, would lead to more favorable outcomes 
for those with cardiac problems. NIH-funded research might help us 
answer these complicated questions in order to save lives and money.

                      THE AMERICAN BRAIN COALITION

    Last year, the Society for Neuroscience, along with the American 
Academy of Neurology, started the American Brain Coalition (ABC). ABC 
is a nonprofit organization that brings together patients with 
disabling brain disorders, the families of those that suffer, and the 
professionals that research and treat diseases of the brain. The 
mission of the ABC is to reduce the burden of brain disorders, and 
advance the understanding of the brain.
    Because the brain is the center of human existence and the most 
complex living structure known, ABC advocates for collaboration among 
researchers and doctors who treat disorders of the brain. As seen with 
depression and heart disease, the brain plays a vital role in 
conditions once believed to be unrelated to the brain. It is only 
through more research that we will begin to further understand, 
prevent, and treat neurological and psychiatric diseases.

                    FISCAL YEAR 2006 BUDGET REQUEST

    The Society for Neuroscience supports the Ad Hoc Group for Medical 
Research Funding request of a 6 percent increase for NIH in fiscal year 
2006. This will help NIH to carry out its Blueprint initiatives and 
help people affected by neurological disorders lead healthier, 
productive lives. Furthermore it will help sustain the infrastructure 
for innovative discoveries necessary to compete as a worldwide leader 
in biomedical research.
    The request is based on the following information:
  --$1 billion is needed to cover biomedical research inflation, which 
        is projected to be 3.5 percent;
  --$560 million is needed to replace the evaluation set-aside (an 
        amount taken from each institute), which this year amounted to 
        2.4 percent (it used to be 1 percent); and
  --The total number of research project grants (RPGs) is declining by 
        402 from what it was in fiscal year 2005.
    Mr. Chairman, thank you for the opportunity to testify before this 
committee.
                                 ______
                                 
     Prepared Statement of The Humane Society of the United States

    On behalf of The Humane Society of the United States (HSUS) and our 
more than 8.6 million supporters nationwide, we appreciate the 
opportunity to provide testimony on our top funding priorities for the 
Labor, Health and Human Services, Education and Related Agencies 
Subcommittee in fiscal year 2006.

  INTERAGENCY COORDINATING COMMITTEE ON THE VALIDATION OF ALTERNATIVE 
                            METHODS (ICCVAM)

    We were very pleased that Congress enacted Public Law 106-545 by 
unanimous voice vote in both chambers in 2000. This legislation, 
introduced by Senator Mike DeWine (R-OH) and Representatives Ken 
Calvert (R-CA) and Tom Lantos (D-CA), strengthened and made permanent 
the Interagency Coordinating Committee on the Validation of Alternative 
Methods (ICCVAM). The statute has already begun to enhance the federal 
government's capacity to evaluate and adopt chemical testing methods 
that are often faster, cheaper, and more scientifically sophisticated 
than current methods, as well as more responsive to the public's 
concerns about the welfare of animals used in toxicity testing. Public 
Law 106-545 has streamlined the process by which these better methods 
are validated and assessed, and has eased institutional barriers within 
federal agencies that discourage their use.
    ICCVAM performs an invaluable ``win-win'' function for regulatory 
agencies and stakeholders in industry, public health, and animal 
protection by assessing the suitability of new toxicological test 
methods that have interagency application. These new (and newly 
revised) methods include alternative methods that can limit animal use 
or suffering in testing. After appropriate independent peer review of a 
new test method, ICCVAM provides its assessment of the new test to the 
federal agencies that regulate the particular endpoint that the test 
measures. In turn, the federal agencies maintain their authority to 
incorporate the validated test method as appropriate for the agencies' 
regulatory mandates. This streamlined approach to assess the validation 
status of new test methods has reduced the regulatory burden of 
individual agencies, provided ``one-stop shopping'' for industry, 
animal protection, and public health advocates to consider test 
methods, and set uniform criteria for what constitutes a validated test 
method.
    ICCVAM arose from an initial mandate in the NIH Revitalization Act 
of 1993 for the National Institute of Environmental Health Sciences 
(NIEHS) to ``(a) establish criteria for the validation and regulatory 
acceptance of alternative testing methods, and (b) recommend a process 
through which scientifically validated alternative methods can be 
accepted for regulatory use.'' In 1994, NIEHS established an ad hoc 
ICCVAM to write a report that would recommend criteria and processes 
for validation and regulatory acceptance of toxicological testing 
methods that would be useful to federal agencies and the scientific 
community. Through a series of public meetings, interested stakeholders 
and agency representatives from 14 regulatory and research agencies 
developed NIH Publication No. 97-3981, Validation and Regulatory 
Acceptance of Toxicological Test Methods. This report has become the 
``sound science'' guide for consideration of new test methods by the 
federal agencies and interested stakeholders. After publication of the 
report, the ad hoc ICCVAM moved to standing status under the NIEHS' 
National Toxicology Program Interagency Center for the Evaluation of 
Alternative Toxicological Methods (NICEATM). Representatives from 
federal regulatory and research agencies have continued to meet, with 
advice from NICEATM's Scientific Advisory Committee and independent 
peer review committees, to assess the validation of new toxicological 
test methods.
    Since its inception, ICCVAM has conducted rigorous evaluations of 
several test methods and has concluded that these methods are 
scientifically valid, i.e., have been adequately validated, and are 
acceptable for specific purposes. These methods include Corrositex, 
Epiderm, Episkin, and Transcutaneous Epithelial Resistance assays for 
assessing skin corrosivity; the 3T3 NRU Phototoxicity assay for 
assessing phototoxicity; the Local Lymph Node Assay for assessing skin 
sensitization; and the Up and Down Method and various cytotoxicity 
assays for assessing acute systemic toxicity. In turn, the appropriate 
regulatory agencies have incorporated these methods into their 
regulatory practices.
    The open public comment process, input by interested stakeholders, 
and the continued commitment by various federal agencies have all 
enhanced the ICCVAM process. Now, under Public Law 106-545, ICCVAM is 
poised to go beyond its largely passive role of assessing the 
validation status of test methods that have been developed and 
validated by industry and others. ICCVAM should adopt a more proactive 
role in developing and validating promising tests methods in 
partnership with outside stakeholders, to ensure that a steady stream 
of new test methods are available for review and adoption by the 
federal government. Such a proactive stance and partnership with 
stakeholders will enable the federal government to better harness the 
potential of emerging technologies to meet the challenge of efficiently 
testing large numbers of chemicals with minimal cost in terms of money 
and animal lives. With a more proactive approach, ICCVAM could, for 
example, explore the potential of investigator-initiated and small 
business grant programs to further its mission.
    Adequate funding should be provided for ICCVAM to put the resources 
in place to ensure the federal government and industry have the best 
available tools with which to assess the toxic properties of chemicals 
in commerce. To accomplish this, we respectfully request an earmark of 
$3.6 million for fiscal year 2006 and the following Committee Report 
language:

    ``In order for the Interagency Coordinating Committee for the 
Validation of Alternative Methods (ICCVAM) to carry out its 
responsibilities under the ICCVAM Authorization Act of 2000, the 
Committee strongly urges NIEHS to strengthen the resources provided to 
ICCVAM for methods validation reviews in fiscal year 2006. ICCVAM and 
NIEHS activities must include up-front validation study design, 
execution, and review to ensure that new and revised test methods, non-
animal test methods, and alternative test methods (such as QSARs, 
mechanistic screens, high throughput assays, and toxicogenomics) are 
deemed scientifically valid before they are recommended or adopted for 
use by federal agencies or used in implementing the National Toxicology 
Program's Road Map and Vision for NTP's toxicology program in the 21st 
century.''

                       PAIN AND DISTRESS RESEARCH

    An estimated 40 percent of the National Institutes of Health (NIH) 
budget--or currently more than $11 billion--is devoted to some aspect 
of animal research. At this time, no funding is set aside specifically 
for research into alternatives that reduce the amount of pain and 
distress to which research animals are subjected, nor methods that 
replace or reduce the use of vertebrate animals in research. NIH may 
receive $28.8 billion in fiscal year 2006 if Congress fulfills the 
President's budget request. Out of this funding, we seek $2.5 million 
(0.009 percent) for research and development focused on identifying and 
alleviating animal pain and distress. In addition to our request for a 
specific funding amount, we also urge the Committee to specify in 
report language that this research should be conducted in conjunction 
with, or ``piggy-backed'' onto, ongoing research that already causes 
pain and distress. Infliction of pain and distress on additional 
animals is unnecessary, given the volume of existing research (we 
estimate a minimum of 20-25 percent of all animal research) that is 
believed to involve moderate to significant pain and/or distress.
    The large extent to which animals are used in federally-funded 
research underscores the importance of earmarking funds for pain and 
distress research. NIH has a statutory mandate to conduct or support 
research into alternative methods that produce less pain and distress 
in animals. This was specified in the NIH Revitalization Act of 1993 
regarding a plan for the use of animals in research. Earmarked funding 
will assist NIH in meeting this mandate. Additionally, researchers 
themselves often comment publicly at scientific meetings about the 
urgent need for funding in order to properly understand and mitigate 
pain and distress in research animals and to follow Animal Welfare Act 
and Public Health Service policy requirements to minimize pain and 
distress.
    It is well known that uncontrolled, undetected, and unalleviated 
pain and distress has adverse effects on animal welfare, which leads to 
adverse effects on the quality of science. Ultimately, the lack of 
information on pain and distress leads to misinterpretation of research 
results that could result in harmful effects in human beings when pre-
clinical animal research results are applied to humans in clinical 
trials.
    A 2001 survey conducted by an independent polling firm indicates 
that concern about animal pain and distress strongly influences public 
opinion about animal research in general. Seventy-five percent of the 
American public opposes research that causes severe animal pain and/or 
distress, even when it is health-related. Despite this public concern, 
NIH has failed to sponsor research and development aimed at determining 
how to minimize animal suffering and distress in the laboratory.
    During the past several years, our organization has been reviewing 
institutional policies and practices with respect to pain and distress 
in animal research. We have found that research institutions have 
inconsistent policies due to the lack of information on this subject, 
and that standards vary greatly from one institution to another. The 
federal standard for determining laboratory animal pain specifies that, 
if a procedure causes pain or distress to humans, it should be assumed 
to cause pain and distress to animals. Furthermore, while human 
experience can and should provide a useful guide in some cases, there 
are others in which humans are never subjected to the conditions facing 
laboratory animals. Information on pain and distress that animals 
themselves actually experience is important.
    Our nation takes pride in leading the world in biomedical research, 
yet we lag behind many other countries in our efforts to minimize pain 
and distress in animal subjects. For example, the United Kingdom, 
Sweden, Switzerland, Germany, the Netherlands and the European Union 
all have committed funds specifically for the ``three R's'' (replacing 
the use of animals, reducing their use, and refining research 
techniques to minimize animal suffering).
    We urge the Committee to make this small investment of $2.5 million 
to promote animal welfare and enhance the integrity of scientific 
research. We also respectfully request this accompanying committee 
report language:

    ``The Committee provides $2.5 million to support research and 
development focused on improving methods for recognizing, assessing, 
and alleviating pain and distress in research animals. No pain and 
distress should be inflicted solely for the purpose of this initiative, 
since the investigations can and should be conducted in conjunction 
with ongoing research that is believed to involve pain and distress 
under Government Principle IV of Public Health Service Policy, which 
assumes that procedures that cause pain and distress in humans may 
cause pain and distress in animals.''

    Again, we appreciate the opportunity to share our views and top 
priorities for the Labor, Health and Human Services, Education and 
Related Agencies Appropriation Act of fiscal year 2006. We hope the 
Committee will be able to accommodate these modest requests that will 
benefit animals, enhance effectiveness of toxicological testing, and 
improve the quality of research. Thank you for your consideration.
                                 ______
                                 
           Prepared Statement of Voices for National Service

    Mr. Chairman and Members of the Subcommittee, Voices for National 
Service, formerly known as the Save AmeriCorps Coalition, is a 
coalition of community-based organizations, faith-based groups, state 
commissions, private sector partners, institutions of higher education, 
and others interested in promoting national service through AmeriCorps 
and other vehicles. We look forward to working with you to strengthen 
AmeriCorps and national service as you oversee the entire budget of the 
Corporation for National and Community Service for the first time.
    In light of AmeriCorps 10th Anniversary, it is appropriate to 
review some of the goals Congress set for AmeriCorps in 1993: ``to meet 
the unmet human, educational, environmental and public safety needs of 
the United States; to renew the ethic of civic responsibility and the 
spirit of community throughout the United States; to expand educational 
opportunity by rewarding individuals who participate in national 
service with an increased ability to pursue higher education or job 
training; to encourage citizens of the United States, regardless of 
age, income, or disability, to engage in full-time or part-time 
national service; and, to provide tangible benefits to the communities 
in which national service is performed.''
    We believe that those who do service through AmeriCorps, as part of 
school or community-based service-learning, or senior volunteer 
programs, through their churches synagogues and mosques, and community-
based organizations are part of one of the great currents of American 
history: working with one's neighbor to build a better community and a 
better nation. President Bush captured this theme when, in his State of 
the Union Address in 2002, he said:

    ``My call tonight is for every American to commit at least 2 
years--4,000 hours--over the rest of your lifetime to the service of 
your neighbors and your nation. . . . Our country [also] needs citizens 
working to rebuild our communities. We need mentors to love children, 
especially children whose parents are in prison. And we need more 
talented teachers in troubled schools.''
      government sponsored service is deeply rooted in our history
    It was almost a century ago that philosopher William James spoke of 
service as ``the moral equivalent of war'' and said if there ``were a 
conscription of the whole youthful population to form for a certain 
number of years a part of the army enlisted against Nature, the 
injustice would tend to be evened out . . . .''
    Since that speech in 1906, Presidents from Franklin D. Roosevelt to 
George W. Bush have proposed that Americans serve both here and abroad 
to improve conditions for those who need support. They recognized that 
serving made better citizens and better Americans, that government--in 
conjunction with community-based institutions--has a role to play in 
solving our most intractable problems and that service must be real, 
not make-work.
    In 1933, President Roosevelt spoke to Civilian Conservation Corps 
(CCC) members in Warm Springs, Georgia and told them that ``You are 
rendering a real service, not only to this community but to this part 
of the State and the whole State. It is permanent work, it is work that 
is going to be useful for a good many generations to come. That is why, 
one reason why, the people of this country as a whole believe in the 
Civilian Conservation Corps . . . .''
    It is difficult to believe that nearly half a century has passed 
since President Kennedy challenged a new generation by saying ``And so, 
my fellow Americans: ask not what your country can do for you--ask what 
you can do for your country.'' Kennedy's Peace Corps proposal included 
many of the principles embodied in AmeriCorps:

    ``In establishing our Peace Corps we intend to make full use of the 
resources and talents of private institutions and groups. Universities, 
voluntary agencies, labor unions and industry will be asked to share in 
this effort . . .  making it clear that the responsibility for peace is 
the responsibility of our entire society. . . . We will only send 
abroad Americans who are wanted by the host country--who have a real 
job to do--and who are qualified . . . . Programs will be developed 
with care, and after full negotiation . . . . Life in the Peace Corps 
will not be easy. There will be no salary and allowances will be at a 
level sufficient only to maintain health and meet basic needs.''

             NATIONAL SERVICE HAS BROAD BIPARTISAN SUPPORT

    The roots of AmeriCorps are contained in national service 
legislation enacted in 1990 and signed by President George H.W. Bush. 
It reflected his belief, articulated in his Inaugural address, that 
``America is never wholly herself unless she is engaged in high moral 
principle. We as a people have such a purpose today. It is to make 
kinder the face of the Nation and gentler the face of the world. My 
friends, we have work to do.'' To address these issues, he said ``we 
will do the wisest thing of all: We will turn to the only resource we 
have that in times of need always grows--the goodness and the courage 
of the American people.'' He called for:

    ``A new engagement in the lives of others, a new activism, hands-on 
and involved, that gets the job done. We must bring in the generations, 
harnessing the unused talent of the elderly and the unfocused energy of 
the young. For not only leadership is passed from generation to 
generation, but so is stewardship. And the generation born after the 
Second World War has come of age. The old ideas are new again because 
they are not old, they are timeless: duty, sacrifice, commitment, and a 
patriotism that finds its expression in taking part and pitching in.''

    Exactly seven years less one day before September 11, President 
Clinton swore in the first class of AmeriCorps members. Reflecting many 
of the themes articulated by President Bush, he told them that 
``Service is never a simple act, it's about sacrifice for others and 
about accomplishment for ourselves, about reaching out, one person to 
another, about all our choices gathered together as a country to reach 
across all our divides. It's about you and me and all of us together--
who we are as individuals and what we are as a nation. Service is a 
spark to rekindle the spirit of democracy in an age of uncertainty.''
    Like Presidents Roosevelt, Kennedy, and Bush, President Clinton 
also understood that each generation owes something to the nation for 
what it has received as well as to those who follow:

    ``And your generation is no exception. We look at you now. And we 
know you are no generation of slackers. Instead you are a generation of 
doers. And you want to give something back to the country that has 
given so much to you. The only limit to our future is what we're 
willing to demand of ourselves today. Generations of Americans before 
us have done the groundwork. Now, it falls to all of us to build on 
their foundations.''

    Two years ago, AmeriCorps was in crisis; its very survival in 
doubt. At that time, virtually every governor, more than 150 mayors, 
hundreds of university presidents, and corporate and civic leaders 
publicly recognized the good that AmeriCorps had accomplished since its 
creation 10 years ago. More than 100 editorials in large and small 
newspapers throughout the nation provided ample evidence of how 
AmeriCorps members improved their communities.
    President George W. Bush's support, important bipartisan 
legislative initiatives to improve the management of the Corporation 
for National and Community Service, installation of a new leadership 
team, and the rulemaking process still underway not only helped to save 
AmeriCorps but to remind us that service is the responsibility of all 
Americans.

                       STRENGTHENING COMMUNITIES

    AmeriCorps members serve in more than 900 local and state nonprofit 
organizations, public agencies, and faith-based organizations funded by 
the Corporation for National and Community Service through both state 
commissions as well as national nonprofit AmeriCorps programs including 
Teach for America, the National Association of Community Health 
Centers, the Red Cross, Habitat for Humanity, City Year, Public Allies, 
the National Association of Service and Conservation Corps, Jumpstart 
for Young Children, the Sisters of Notre Dame, and the Experience 
Corps.
    They serve to address problems within four broad categories: 
``unmet human, educational, environmental, or public safety needs.'' 
Communities identify their needs and choose the model that is most 
appropriate to meeting those needs. This is a bottom up, not a top-down 
program.
    AmeriCorps members also help strengthen Homeland Security and 
prevent or mitigate the effects of natural disasters. Recently, 
AmeriCorps members from Minnesota and Washington State joined 
colleagues serving in Florida to bring a measure of relief to victims 
of devastating hurricanes. They helped mobilize the largest volunteer 
disaster response in American history, repaired damaged homes, and 
distributed food and water to victims and community volunteers. Indeed, 
since September 11, 2001 the AmeriCorps program has expanded its work 
in public safety, public health, disaster relief, and homeland 
security.
    AmeriCorps members teach in underserved schools, tutor and mentor 
youth including the children of prisoners, run after-school programs, 
build affordable housing, provide public health services, prevent 
forest fires and do disaster relief, run after-school programs, and 
help communities respond to disasters. Hundreds of AmeriCorps state 
programs clean rivers and streams, enrich after school programs, 
support local law enforcement by providing meaningful alternatives to 
gangs, deliver services to the elderly, and meet other needs defined by 
the communities in which they serve.
    This year, for example, AmeriCorps members are serving more than 2 
million children and youth, providing valuable resources to reach the 
President's goal of having all children able to read by third grade. 
They are also helping to recruit and train more than 600,000 community 
volunteers.
    AmeriCorps members leverage community resources as well as perform 
direct service. In fiscal year 2003, AmeriCorps members recruited more 
than 529,000 community volunteers an increase of almost 275,000 (from 
the previous year when the Corporation stopped recruiting new members 
and new volunteers because of its self-imposed recruitment freeze). 
Last year, AmeriCorps programs generated more than $165 million from 
non-Corporation partners, $70 million more than in the previous year.

                            ACCOMPLISHMENTS

    According to the State Profiles and Performance Report 2002-2003 
published by the Corporation for National and Community Service 
(December 2004), examples of what AmeriCorps members accomplished 
include (but are not limited to):
  --In Alaska, members tutored almost 6,000 students in grades 1 
        through 12 and assessed 485 homes for energy efficiency.
  --In Florida, members recruited 2,000 community volunteers to provide 
        education services, maintained and expanded 200 acres of 
        habitat for threatened and endangered species, and built 40 
        homes for low-income families.
  --In Georgia, almost 7,500 homeless individuals received referrals to 
        permanent or transitional housing.
  --In Indiana, 2,400 juveniles participated in career development 
        activities for offenders or ex-offenders.
  --In Iowa, more than 4,800 elementary and middle students received 
        tutoring and mentoring support, and 32,000 received education 
        and training about the environment.
  --In Kentucky, members staged eight forums to educate more than 1,000 
        at-risk elderly about home safety and conducted 265 Home Safety 
        Assessments for seniors.
  --In Maine, members made 600 presentations on disaster preparedness, 
        benefiting more than 36,000 people and almost 1,300 people 
        participated in after-school activities designed to reduce 
        violence in public housing.
  --In Maryland, members removed 453 tons of trash, improving the 
        quality of storm water run-off into the Chesapeake Bay and 
        1,900 homeless families received food, clothing, or furniture.
  --In Minnesota, members constructed 151 housing units for low income 
        seniors or people with disabilities, planted almost 142,000 
        trees, and conserved more than 10,000 acres of habitat and 
        land.
  --In Mississippi, members trained 715 people with disabilities in 
        life skills, helped train mentally, or developmentally, 
        disabled adults for employment, and mentored 1,100 low income 
        and underachieving middle school students.
  --In Montana, members constructed 54 miles of fence to protect wild- 
        or park lands, maintained 309 miles of trails, roads, and other 
        public areas, and increased access to technology for more than 
        1,100 youth, parents, and members of the community.
  --In Nevada, 3,200 students in grades 1 through 12 received tutoring, 
        577 homeless veterans received employment-related counseling, 
        and almost 1,000 women benefited from anti-victimization 
        counseling and workshops on preventing domestic violence.
  --In New Mexico, almost 24,400 people participated in after-school 
        sports and violence avoidance activities, 400 adults received 
        instruction in basic skills development and GED training, and 
        138 homeless families found homes.
  --In New York, members transported 1,000 children to medical 
        appointments, delivered meals and snacks to about 58,000 
        children and seniors, and provided literacy activities to 
        almost 17,000 children.
  --In Ohio, members trained more than 9,000 youth in conflict 
        resolution, built repaired, or rehabilitated 364 housing units, 
        and provided educational support services to 1,500 students 
        during the summer months.
  --In Oregon, 7,000 students benefited from updating high school 
        Career Centers with college, military, apprenticeship, and 
        trade school information, planted almost 5,000 trees, and grew 
        and distributed more than 900 pounds of produce.
  --In Pennsylvania, members tutored almost 14,600 elementary and high 
        school students and more than 6,800 citizens received either 
        needs assessment or support in the areas of domestic violence, 
        foster care, mental health, and housing for homeless veterans.
  --In Tennessee, more than 900 people received access to health care, 
        almost 200 children had their immunizations ensured, and more 
        than 1,300 senior women received informational materials about 
        breast cancer.
  --In Washington, almost 37,000 students benefited from out of class 
        enrichment activities like field trips, about 6,600 peer tutors 
        were recruited, and more than 19 miles of rivers, river banks, 
        beaches, and fish habitat were restored or conserved, 
        benefiting local salmon runs.
  --In Wisconsin, members organized or packed 290 tons of food to be 
        distributed to community agencies and provided after-school 
        tutoring or mentoring services to more than 1,200 students.
  --In West Virginia, more than 3,200 children received tutoring in a 
        six-week summer literacy program, helping to realize an average 
        four month gain in literacy skills.
    According to the Corporation's National Performance Benchmarking 
Survey, ``57 percent of organizations' AmeriCorps partners reported 
that AmeriCorps members `considerably' helped them increase their 
involvement in partnerships and coalitions. (29 percent reported 
`moderately' helped).'' Also, three quarters of grantees said that 
``AmeriCorps had increased `by a considerable amount' the number of end 
beneficiaries served.'' About ``83 percent of grantees reported that 
AmeriCorps members helped their organization either `considerably' (53 
percent) or `moderately' (30 percent) in leveraging additional 
volunteers.'' And, ``more than 75 percent of organizations receiving 
disaster and emergency readiness and preparedness training from 
AmeriCorps programs have become better prepared by conducting emergency 
drills, changing organization operations, or preparing emergency 
kits.''
    With your support, in the next fiscal year, approximately 40,000 
AmeriCorps members will provide tutoring to students, help operate 
after-school programs, increase Americans' access to health care, and 
provide support for families in crisis. In addition, more than 5,000 
children of prisoners will receive services provided by AmeriCorps 
members.
    In 2004, the Corporation for National and Community Service 
celebrated its tenth anniversary. In the last decade, more than 400,000 
young Americans dedicated themselves to either full or part-time 
service through AmeriCorps to improve their communities and their 
country. At the same time, AmeriCorps members earned Education Awards 
worth more than $1 billion.

                    SERVICE CHANGES THOSE WHO SERVE

    Serving in AmeriCorps also changes those who serve. According to 
the recent study conducted by Abt Associates ``Serving Country and 
Community: A Longitudinal Study of Service in AmeriCorps'' 
participation in AmeriCorps ``resulted in statistically significant 
positive impacts on members' connection to community, participation in 
community-based activities, and personal growth through service. While 
AmeriCorps members increased their level of civic engagement . . . 
scores for comparison group members typically showed little or no 
change. . . .'' ``Additionally, there was a positive and significant 
effect of AmeriCorps participation on volunteering for members without 
prior volunteering experience. These results are important because they 
reflect the capacity of AmeriCorps to strengthen existing beliefs in 
and commitments to civic engagement and community service, and to 
awaken new ones.''
    The Abt study also reported that service in AmeriCorps ``had a 
meaningful impact on both attitudinal and behavioral employment 
outcomes.'' It increased ``the work skills of AmeriCorps members'' and 
motivated ``members to choose public service careers, such as teaching, 
social work, and military service.''
    Thus, AmeriCorps proves its value everyday in communities across 
the country and by changing the lives of AmeriCorps members.

                      THE FISCAL YEAR 2006 REQUEST

    We are hopeful that under your leadership local communities 
throughout the nation will continue to be served by as many as 75,000 
AmeriCorps members. At the same time, we want to make clear that we are 
as committed to the quality of the service as to reaching a specific 
number of AmeriCorps members.
    We very much appreciate the increase in funding that Congress 
provided in fiscal year 2004 to save AmeriCorps. It must be noted, 
however, that funding for AmeriCorps grants has declined from the 
fiscal year 2004 enacted high of $312 million to the proposed $275 
million, a cut of more than 10 percent. At the same time funding for 
the Trust has increased from $129 to a proposed $146 million.
    The Voices for National Service Coalition believes that it will 
require $442 million to achieve the number of AmeriCorps members 
proposed by the Corporation for National and Community (75,000) while 
maintaining the historical balance between full-time, part-time, and 
Education award only AmeriCorps members. To sustain this level of 
service, we urge you to fund AmeriCorps at the level proposed by 
President Bush in his fiscal year 2005 budget. We are very concerned 
that with operating costs increasing, recruiting the same number of 
AmeriCorps members with $20 million fewer dollars than the President 
proposed just last year may force the Corporation to make programmatic 
compromises that will undermine the historic nature and fundamental 
character of AmeriCorps. While we support the Corporation's desire to 
increase the number of ``effective, lower cost programs, such as 
professional and teacher corps'' we remain convinced that 
responsiveness to local needs requires the Corporation to support a mix 
of higher, as well as lower, cost programs.
    We also want to call the Committee's attention to two other 
elements of the Corporation's request. First, we support the 
Corporation's proposal to eliminate the cap on National Direct grants. 
We share its concern that ``capping funding for National Direct grants 
may prevent [it] from supporting outstanding service programs.'' 
Second, we are concerned about the Corporation's failure to seek funds 
for the Challenge Grant program. Challenge grants promote competition 
and are an important tool which programs can use to leverage additional 
private sector funds. If the Corporation truly wants to achieve program 
sustainability by reducing dependence on federal grants, it ought to 
increase Challenge Grant funds rather than eliminate them. The response 
to Challenge Grants has been overwhelming and we believe the program's 
success justifies its continuation.

              PROMOTING QUALITY AND INCREASING EFFICIENCY

    As you begin your difficult work this year, Voices for National 
Service urges you to consider the following themes that will further 
increase the Corporation's effectiveness and meet its goal of ``put 
[ting] the customer first'':
    1. Education Award Only slots should be a tool for state 
flexibility and cost-effectiveness. They should not become a way to 
increase the number of AmeriCorps members ``on the cheap.'' We believe 
that the current ratio between full- and part-time members and 
recipients of Education Awards should be maintained and that no more 
than 40 percent of the AmeriCorps portfolio should be allocated to 
Education Award Only programs. This will allow states to reduce cost 
per member, and be responsive to both local resources and local needs.
    2. The Corporation must continue to affirm its commitment to 
diversity of AmeriCorps members and be sensitive to geographic 
diversity as well as racial, ethnic, and socio-economic diversity. 
Corporation policy should reflect an understanding of the difficulties 
that programs in rural areas and inner-cities have in recruiting 
private sector and philanthropic dollars and the fact that programs 
whose enrollment focus is on low-income, out of school and minority 
young people are likely to have greater difficulty recruiting and 
retaining members than programs that recruit more affluent members.
    3. The Re-fill Rule should be fully restored. While we appreciate 
the Corporation's effort to reintroduce its slot refill policy, the 
present one-to-one, one-time-only policy is not sufficient to ensure 
that programs can meet local needs. AmeriCorps programs that enroll 
significant numbers of economically and educationally disadvantaged 
corps members are likely to experience higher rates of attrition and 
lower rates of retention. Reverting to its prior practice of allowing 
programs to completely re-fill vacated slots at any time during the 
year would allow greater participation in AmeriCorps, encourage 
participants with a broad array of backgrounds to participate, and 
ultimately allow programs--and AmeriCorps as a whole--to provide 
deserving people, often highly disadvantaged, the opportunity to pursue 
their educational goals.

                               CONCLUSION

    For the last 70 years, Presidents of both parties, and their 
Congressional champions, have recognized that service programs with 
government support, the active support of community-based 
organizations, faith-based institutions, and the private sector can 
play an important role in strengthening communities, teaching the 
virtues of civic engagement, and strengthening the bonds that connect 
us as a people. Service is not only an effective strategy for attacking 
our problems, it is a way to remind Americans of all ages that we have 
a responsibility to give something back to our country.
    We believe that AmeriCorps has made substantial progress in meeting 
these ambitious goals and look forward to working with you to improve 
the lives of all Americans through service.
    Thank you for the opportunity to provide this testimony.
                                 ______
                                 

                     NATIONAL INSTITUTES OF HEALTH

              Prepared Statement of the Alpha-1 Foundation

                       SUMMARY OF RECOMMENDATIONS

    The Alpha-1 Foundation requests an allocation in the budget to 
enable the CDC, National Center for Birth Defects and Developmental 
Disabilities to implement a national targeted Alpha-1 detection 
program. The Foundation recommends that CDC receive $2 million in 
fiscal year 2006 for implementation.
    The Foundation recommends that NHLBI enhance its portfolio of 
research and education on the fourth leading cause of death in the 
United States, Chronic Obstructive Pulmonary Disease (COPD), including 
genetic risk factors such as Alpha-1 Antitrypsin Deficiency.
    The Foundation commends NIH on the roadmap and recommends that 
NHLBI, NIDDK, NHGRI, NIEHS, and other institutes establish an Alpha-1 
inter-institute coordinating committee to facilitate collaboration on 
this genetic lung and liver disease.
    The Foundation encourages HRSA to collect additional data to 
evaluate the impact of the new lung transplant organ allocation system 
being implemented by the Organ Procurement and Transplantation Network/
United Network for Organ Sharing.
    The Foundation supports the request of the Ad Hoc Group for Medical 
Research Funding for a $30 billion appropriation for NIH in fiscal 
2006.
    Mr. Chairman and members of the Subcommittee thank you for the 
opportunity to submit testimony for the record on behalf of the Alpha-1 
Foundation.

                         THE ALPHA-1 FOUNDATION

    The Alpha-1 Foundation is a national not-for-profit organization 
dedicated to providing the leadership and resources that will result in 
increased research, improved health, worldwide detection and a cure for 
Alpha-1 Antitrypsin (Alpha-1) Deficiency. The Foundation has built the 
research infrastructure with private investment, funding over 
$15,000,000 in grants from basic to social science, establishing a 
national patient registry, tissue and DNA bank, translational 
laboratory, assisting in fast track development of new therapeutics, 
and stimulating the involvement of the scientific community. The 
Foundation has invested the resources to support clinical research 
which follows the roadmap established by the NIH; uniquely positioning 
it for a perfect private public partnership. There is a lack of 
awareness of the insidious nature of the early symptoms of the lung and 
liver disease associated with this genetic condition by both medical 
care providers and the public. It is our hope that the federal 
government will leverage the Foundation's investment with support for a 
national Alpha-1 targeted detection program.

                ALPHA-1 IS SERIOUS AND LIFE THREATENING

    Alpha-1 is the leading genetic risk factor for Chronic Obstructive 
Pulmonary Disease (COPD) and is often misdiagnosed as such. Alpha-1 
afflicts an estimated 100,000 individuals in the United States with 
fewer than 5 percent accurately diagnosed. These are people who know 
they are sick and as yet have not put a name to their malady. Although 
Alpha-1 testing is recommended for those with COPD this standard of 
care is not being implemented. In addition, an estimated 20 million 
Americans are the undetected carriers of the Alpha-1 gene and may pass 
the gene on to their children. Of these 20 million carriers, 7-8 
million may be at risk for lung or liver disease.
    The pulmonary impairment of Alpha-1 causes disability and loss of 
employment during the prime of life (20-40 years old), frequent 
hospitalizations, family disorganization, and the suffering known only 
to those unable to catch their breath. Fully half of those diagnosed 
require supplemental oxygen. Lung transplantation, with all its 
associated risks and costs, is the most common final option. Alpha-1 is 
the primary cause of liver transplantation in infants and an increasing 
cause in adults. Alpha-1 liver disease currently has no specific 
treatment aside from transplantation. The cost to these families in 
time, energy and money is high and often devastating. Alpha-1 also 
causes liver cancer.
    Alpha-1 is a progressive and devastating disorder that in the 
absence of proper diagnosis and therapy leads to premature death; in 
spite of the availability of therapeutics for lung disease and 
preventative health measures that can be life-prolonging. It is 
estimated that untreated individuals can have their life expectancy 
foreshortened by 20 or more years. Yet early detection, the avoidance 
of environmental risk factors and pulmonary rehabilitation can 
significantly improve health.

       THE MEDICAL NEEDS OF THE ALPHA-1 COMMUNITY HAVE GONE UNMET

    Alpha-1 is a hidden killer that desperately needs new therapies. 
There is a lack of awareness of the insidious nature of the early 
symptoms of the lung and liver disease associated with this genetic 
condition by both medical care providers and the public.
    Currently, the only specific therapy for Alpha-1 lung disease is 
intravenous augmentation therapy produced from pooled human plasma at 
an average annual cost of $50,000-$100,000. This therapy increases the 
plasma levels of the deficient protein and appears to slow or halt the 
progression of the pulmonary disease described above. There is 
currently nothing available to regenerate lung tissue and restore lung 
function.
    In addition, Alpha-1 liver disease is equally life threatening, as 
is the case with many chronic liver conditions, often reaching an 
advanced stage with few symptoms and little warning. Advanced liver 
disease is often untreatable, and many with Alpha-1 have erroneously 
been told they have alcoholic liver disease because of the lack of 
physician awareness.

                            ALPHA-1 AND COPD

    As the forth leading cause of death, COPD is a major public health 
concern. Data indicates that not all individuals who smoke develop lung 
disease leading many to conclude that COPD has significant genetic and 
environmental risk factors. As the most significant genetic risk factor 
for COPD, Alpha-1 has much to tell us about the pathogenesis of lung 
disease. Discoveries and advances made in Alpha-1 will impact the 
larger 10-24 million individuals living with COPD.

                               DETECTION

    The Alpha-1 Foundation conducted a pilot program in the state of 
Florida where we garnered the knowledge and experience necessary to 
launch an awareness and National Targeted Detection Program (NTDP). The 
goals of the NTDP are to educate the medical community and people with 
COPD and liver disease, alerting them that Alpha-1 may be an underlying 
factor of their disease; and stimulating testing for Alpha-1. This 
effort will uncover a significant number of people who would benefit 
from early diagnosis, treatment and preventative health measures.
    The Foundation distributes the American Thoracic Society/European 
Respiratory Society (ATS/ERS) ``Standards for the Diagnosis and 
Management of Individuals with Alpha-1 Antitrypsin Deficiency'' to 
physicians, nurses and respiratory therapists. Additionally, health 
care practitioners and the COPD community are being targeted through 
press releases, newsletter articles and various website postings.
    The national implementation of the NTDP is enhanced through the 7 
Clinical Resource Network Centers of the National Heart, Lung, Blood 
Institute of the National Institutes of Health; 51 Foundation 
affiliated Clinical Resource Centers; large pulmonary practices and 
various teaching hospitals and universities. The NTDP also employs a 
direct to consumer approach targeted to people with COPD.
    The Alpha-1 Foundation's Ethical Legal and Social Issues (ELSI) 
Working Group endorsed the recommendations of the ATS/ERS Standards 
Document which recommends testing symptomatic individuals or siblings 
of those who are diagnosed with Alpha-1. Early diagnosis in Alpha-1 can 
significantly impact disease outcomes by allowing individuals to seek 
appropriate therapies, and engage in essential life planning. 
Unfortunately, seeking a genetic test may lead to discrimination 
against individuals who have no control over their inherited condition. 
The absence of federal protective legislation has caused the ELSI to 
recommend against population screening and genetic testing in the 
neonatal population. The Foundation commends the Senate for passing the 
Genetic Non-Discrimination Act of 2005 and is working to ensure that 
the House takes the same positive action.
    The Alpha-1 Coded Testing (ACT) Trial, funded by the Alpha-1 
Foundation and conducted at the Medical University of South Carolina 
offers a free and confidential finger-stick test that can be completed 
at home. The results are mailed directly to the participants. The ACT 
Trial has offered individuals the opportunity to receive confidential 
test results since September of 2001, to date over 2,400 test kits have 
been requested.

                            ALPHA-1 RESEARCH

    The Alpha-1 Foundation believes that significant federal investment 
in medical research is critical to improving the health of the American 
people and specifically those affected with Alpha-1. The support of 
this Subcommittee has made a substantial difference in improving the 
public's health and well-being.
    The Foundation requests that the National Institutes of Health 
increase the investment in Alpha-1 Antitrypsin (AAT) Deficiency and 
that the Centers for Disease Control and Prevention initiate a federal 
partnership with the Alpha-1 community to achieve the following goals:
  --Promotion of basic science and clinical research related to the AAT 
        protein and AAT Deficiency;
  --Funding to attract and train the best young clinicians for the care 
        of individuals with AAT Deficiency;
  --Support for outstanding established scientists to work on problems 
        within the field of AAT research;
  --Development of effective therapies for the clinical manifestations 
        of AAT Deficiency;
  --Expansion of awareness and targeted detection to promote early 
        diagnosis and treatment.

             SPECIFIC AREAS OF CONCERN AND RECOMMENDATIONS

    1. The Foundation requests an allocation in the budget to enable 
the CDC, National Center for Birth Defects and Developmental 
Disabilities to implement a national targeted Alpha-1 detection 
program. The Foundation recommends that CDC receive $2 million in 
fiscal year 2006 for implementation.
    2. The Foundation recommends that NHLBI enhance its portfolio of 
research and education on the fourth leading cause of death in the 
United States, Chronic Obstructive Pulmonary Disease (COPD), including 
genetic risk factors such as Alpha-1 Antitrypsin Deficiency.
    3. The Foundation commends NIH on the roadmap and recommends that 
NHLBI, NIDDK, NHGRI, NIEHS, and other institutes establish an Alpha-1 
inter-institute coordinating committee to facilitate collaboration on 
this genetic lung and liver disease.
    4. The Foundation encourages HRSA to collect additional data to 
evaluate the impact of the new lung transplant organ allocation system 
being implemented by the Organ Procurement and Transplantation Network/
United Network for Organ Sharing.
    5. The Foundation supports the request of the Ad Hoc Group for 
Medical Research Funding for a $30 billion appropriation for NIH in 
fiscal 2006.

                           ALPHA-1 FAST FACTS

    Alpha-1 Antitrypsin Deficiency (Alpha-1) is one of the most common 
fatal genetic diseases, 95 percent of those with Alpha-1 are 
undiagnosed.
    Alpha-1 is commonly misdiagnosed as asthma and Chronic Obstructive 
Pulmonary Disease (COPD) as symptoms are similar. It usually takes 
seven years and five physicians to be accurately diagnosed after the 
onset of symptoms.
    The World Health Organization (WHO) and the American Thoracic 
Society/European Respiratory Society recommends that all individuals 
with chronic obstructive pulmonary disease (an estimated 10-24 million 
Americans) as well as adults and adolescents with asthma (an estimated 
14.6 million Americans) be tested for Alpha-1.
    Alpha-1 is more prevalent than Cystic Fibrosis. An estimated 20 
million Americans are undetected carriers of the Alpha-1 gene and may 
be at risk for lung and/or liver disease and may pass the gene on to 
their children.
    Alpha-1 is a life-threatening adult onset lung disease that is 
progressive and irreversible. It is a major reason for lung 
transplantation. Nothing repairs lung tissue damage but early diagnosis 
allows individuals to engage in preventative health strategies and 
receive appropriate therapy which saves health care dollars.
    Alpha-1 can also manifest as liver disease (5-10 percent) in adults 
as well as newborns for which the only treatment is a liver transplant. 
Alpha-1 is a leading cause of liver transplants in newborns.

                   COMMON SYMPTOMS OF ALPHA-1 INCLUDE

  --Recurring respiratory infections
  --Shortness of breath or awareness of one's breathing
  --Non-responsive Asthma or Year-Round Allergies
  --Rapid deterioration of lung function without a history of 
        significant smoking
  --Decreased exercise tolerance
  --Chronic liver problems
  --Elevated liver enzymes
                                 ______
                                 
Prepared Statement of the American Association for Geriatric Psychiatry

    The American Association for Geriatric Psychiatry (AAGP) 
appreciates this opportunity to present its recommendations on issues 
related to fiscal year 2006 appropriations for mental health research 
and services. AAGP is a professional membership organization dedicated 
to promoting the mental health and well being of older Americans and 
improving the care of those with late-life mental disorders. AAGP's 
membership consists of approximately 2,000 geriatric psychiatrists as 
well as other health professionals who focus on the mental health 
problems faced by senior citizens.
    AAGP would like to thank the Subcommittee for its continued strong 
support for increased funding for the National Institutes of Health 
(NIH) over the last several years, particularly the additional funding 
you have provided for the National Institute of Mental Health (NIMH), 
the National Institute on Aging (NIA), the National Institute on 
Alcohol Abuse and Alcoholism (NIAAA), and the Center for Mental Health 
Services (CMHS) within the Substance Abuse and Mental Health Services 
Administration (SAMHSA). Although we generally agree with others in the 
mental health community about the importance of sustained and adequate 
Federal funding for mental health research and treatment, AAGP brings a 
unique perspective to these issues because of the elderly patient 
population served by our members.
    There are serious concerns, shared by AAGP and researchers, 
clinicians, and consumers that there exists a critical disparity 
between appropriations for research, training, and health services and 
the projected mental health needs of older Americans. This disparity is 
evident in the convergence of several key factors:
  --demographic projections inform us that, with the aging of the U.S. 
        population, there will be an unprecedented increase in the 
        burden of mental illness among aging persons, especially among 
        the baby boom generation;
  --this growth in the proportion of older adults and the prevalence of 
        mental illness is expected to have a major direct and indirect 
        impact on general health service use and costs;
  --despite the fact that effective treatment exists, the current 
        mental health needs of many older adults remain unmet;
  --the number of physicians being trained in geriatric mental health 
        research and clinical care is insufficient to meet current 
        needs, and this workforce shortfall is projected to become a 
        crisis as the U.S. population ages over the next decade;
  --a major gap exists between research, mental health care policy, and 
        service delivery; and
  --despite recent significant increases in appropriations for support 
        of research in mental health, the allocation of NIMH and CMHS 
        funds for research that focuses specifically on aging and 
        mental health is disproportionately low, and woefully 
        inadequate to deal with the impending crisis of mental health 
        in older Americans.

       DEMOGRAPHIC PROJECTIONS AND THE MENTAL DISORDERS OF AGING

    With the baby boom generation nearing retirement, the number of 
older Americans with mental disorders is certain to increase in the 
future. By the year 2010, there will be approximately 40 million people 
in the United States over the age of 65. Over 20 percent of those 
people will experience mental health problems. A national crisis in 
geriatric mental health care is emerging and has received recent 
attention in the medical literature. Action must be taken now to avert 
serious problems in the near future. While many different types of 
mental and behavioral disorders can occur late in life, they are not an 
inevitable part of the aging process, and continued research holds the 
promise of improving the mental health and quality of life for older 
Americans.
    The current number of health care practitioners, including 
physicians, who have training in geriatrics is inadequate. As the 
population ages, the number of older Americans experiencing mental 
problems will almost certainly increase. Since geriatric specialists 
are already in short supply, these demographic trends portend an 
intensifying shortage in the future. There must be a substantial public 
and private sector investment in geriatric education and training, with 
attention given to the importance of geriatric mental health needs. We 
will never have, nor will we need, a geriatric specialist for every 
older adult. However, without mainstreaming geriatrics into every 
aspect of medical school education and residency training, broad-based 
competence in geriatrics will never be achieved. There must be adequate 
funding to provide incentives to increase the number of academic 
geriatricians to train health professionals from a variety of 
disciplines, including geriatric medicine and geriatric psychiatry.
    Current and projected economic costs of mental disorders alone are 
staggering. The direct medical expense to care for a patient with 
Alzheimer's disease ranges from $18,000 to $36,000 a year per patient, 
depending on the severity of the disease. In addition, there are 
substantial indirect costs associated with caring for an Alzheimer's 
disease patient including social support, care giving, and often 
nursing home care. It is estimated that total costs associated with the 
care of patients with Alzheimer's disease is over $100 billion per year 
in the United States. Psychiatric symptoms (including depression, 
agitation, and psychotic symptoms) affect 30 to 40 percent of people 
with Alzheimer's and are associated with increased hospitalization, 
nursing home placement, and family burden. These psychiatric symptoms, 
associated with Alzheimer's disease, can increase the cost of treating 
these patients by more than 20 percent. Although NIA has supported 
extensive research on the cause and treatment of Alzheimer's, treatment 
of these behavioral and psychiatric symptoms has been neglected and 
should be supported through NIMH.
    Depression is another example of a common problem among older 
persons. Approximately 30 percent of older persons in primary care 
settings have significant symptoms of depression; and depression is 
associated with greater health care costs, poorer health outcomes, and 
increased mortality. Of the approximately 32 million Americans who have 
attained age 65, about five million suffer from depression, resulting 
in increased disability, general health care utilization, and increased 
risk of suicide. Older adults have the highest rate of suicide rate 
compared to any other age group. Comprising only 13 percent of the U.S. 
population, individuals age 65 and older account for 19 percent of all 
suicides. The suicide rate for those 85 and older is twice the national 
average. More than half of older persons who commit suicide visited 
their primary care physician in the prior month--a truly stunning 
statistic.
    The enormous and widely underestimated costs of late-life mental 
disorders justify major new investments. The personal and societal 
costs of mental illness and addictive disorders are high, but advances 
in research and treatment will help save lives, strengthen families, 
and save taxpayer dollars.

               THE BENEFITS OF RESEARCH ON PUBLIC HEALTH

    The U.S. Surgeon General's Report on Mental Health (1999) and the 
Administration on Aging Report on Older Adults and Mental Health (2001) 
underscore the prevalence of mental disorders in older persons and 
provide evidence that research has lead to the development of effective 
treatments. These reports summarize research findings showing that 
treatments are effective in relieving symptoms, improving functioning, 
and enhancing quality of life. Preliminary findings suggest that these 
interventions reduce the need for expensive and intensive acute and 
long-term services. However, it is also well demonstrated that there is 
a pronounced gap between research findings on the most effective 
treatment interventions and implementation by health care providers. 
This gap can be as long as 15 to 20 years. These reports stress the 
need for translational and health services research focused on 
identifying the most cost-effective interventions, as well as creating 
effective methods for improving the quality of health care practice in 
usual care settings. A major priority (neglected to date) is the 
development of a health services research agenda that examines the 
effectiveness and costs of proven models of mental health service 
delivery for older persons.
    Special attention also needs to be paid to inadequately or poorly 
studied, serious late-life mental disorders. Illnesses such as 
schizophrenia, anxiety disorders, alcohol dependence and personality 
disorders have been largely ignored by both the research community and 
the funding agencies, despite the fact that these conditions take a 
major toll on patients, their care givers, and society at large. Many 
of AAGP's members are at the forefront of groundbreaking research on 
Alzheimer's disease, depression, and psychosis among the elderly, and 
we strongly believe that more research funds must be focused in these 
areas. Improving the treatment of late-life mental health problems will 
benefit not only the elderly, but also their children, whose lives are 
often profoundly affected by their parents' illness.
    While the funding increases supported by this Subcommittee in 
recent years have been essential first steps to a better future, a 
committed and sustained investment in research is necessary to allow 
continuous progress on the many research advances made to date.

                  NATIONAL INSTITUTE OF MENTAL HEALTH

    In his fiscal year 2006 budget, the President proposed an increase 
of $200 million for the National Institutes of Health (NIH), which 
would bring the entire NIH budget to a level of $28.8 billion. However, 
this 0.7 percent increase over the fiscal year 2005 funding level pales 
in comparison with recent annual double-digit increases. A decline in 
adequate funding increases could have a devastating impact on the 
ability of NIH to sustain the ongoing, multi-year research grants that 
have been initiated in recent years.
    For NIMH, the President is proposing $1.418 billion for scientific 
and clinical research, a 0.4 percent increase over the agency's fiscal 
year 2005 appropriation of $1.412 billion. It is important to note that 
from fiscal year 1999 through fiscal year 2005, NIMH received increases 
that lagged behind the increases received by many of the other NIH 
institutes. Furthermore, the increase proposed by the Administration 
for NIMH for fiscal year 2006 is lower than that proposed for most of 
the other institutes at NIH. As Congress moves forward with 
deliberations on the fiscal year 2006 budget, AAGP believes that NIMH 
should receive a percentage increase that, at the very minimum, is 
equal to the average percentage increase for the other NIH institutes.
    Commendable as recent funding increases for NIH and NIMH have been, 
AAGP would like to call to the Subcommittee's attention the fact that 
these increases have not always translated into comparable increases in 
funding that specifically address problems of older adults. Data 
supplied to AAGP by NIMH indicates that while extramural research 
grants by NIMH increased 59 percent during the five-year period from 
fiscal year 1995 through fiscal year 2000 (from $485,140,000 in fiscal 
year 1995 to $771,765,000 in fiscal year 2000), NIMH grants for aging 
research increased at less than half that rate: only 27.2 percent 
during the same period (from $46,989,000 to $59,771,000). Furthermore, 
despite the fact that over the past four years, Congress, through 
Committee report language, has specifically urged NIMH to increase 
research grant funding devoted to older adults, this has not occurred.
    AAGP is pleased that NIMH has recently renewed its emphasis on 
mental disorders among the elderly, and commends the recent creation of 
a new Aging Treatment and Prevention Intervention Research Branch at 
NIMH. AAGP would like the scope of this Branch increased into a 
comprehensive aging Branch that is responsible for all facets of 
clinical research, including translational, interventions, and disease-
based psychopathology. The Branch should also be given adequate 
resources to fulfill its primary mission within NIMH.
    In addition to supporting research activities at NIMH, AAGP 
supports increased funding for research related to geriatric mental 
health at the other institutes of NIH that address issues relevant to 
mental health and aging, including the National Institute of Aging 
(NIA), the National Institute on Alcohol Abuse and Alcoholism (NIAAA), 
the National Institute on Drug Abuse (NIDA), and the National Institute 
of Neurological Disorders and Stroke.

                   CENTER FOR MENTAL HEALTH SERVICES

    It is also critical that there be adequate funding increases for 
the mental health initiatives under the jurisdiction of the CMHS within 
SAMHSA. While research is of critical importance to a better future, 
the patients of today must also receive appropriate treatment for their 
mental health problems. SAMHSA provides funding to State and local 
mental health departments, which in turn provide community-based mental 
health services to Americans of all ages, without regard to the ability 
to pay. AAGP was pleased that the final budgets for fiscal years 2002, 
2003, 2004, and 2005 included $5 million for evidence-based mental 
health outreach and treatment to the elderly. AAGP worked with members 
of this Subcommittee and its House counterpart on this initiative, 
which is a very important first step in addressing the mental health 
needs of the nation's senior citizens. Increasing this mental health 
outreach and treatment program must be a top priority, as it is the 
only Federally funded services program dedicated specifically to the 
mental health care of older adults.
    Funding for the dissemination and implementation of evidence-based 
practices in ``real world'' care settings must also be a top priority 
for Congress. Despite significant advances in research on the causes 
and treatment of mental disorders in older persons, there is a major 
gap between these research advances and clinical practice in usual care 
settings. The greatest challenge for the future of mental health care 
for older Americans is to bridge this gap between scientific knowledge 
and clinical practice in the community, and to translate research into 
patient care. Adequate funding for this geriatric mental health 
services initiative is essential to disseminate and implement evidence-
based practices in routine clinical settings across the states. 
Consequently, we would urge that the $5 million for mental health 
outreach and treatment for the elderly included in the CMHS budget for 
fiscal year 2005 be increased to $20 million for fiscal year 2006.
    Of that $20 million appropriation, AAGP believes that $10 million 
should be allocated to a National Evidence-Based Practices Program, 
which will disseminate and implement evidence-based mental health 
practices for older persons in usual care settings in the community. 
This program will be a collaborative effort, actively involving family 
members, consumers, mental health practitioners, experts, professional 
organizations, academics, and mental health administrators. With $10 
million dedicated to a program to disseminate and implement evidence-
based practice in geriatric mental health, there will be an assured 
focus on facilitating accurate, broad-based sustainable implementation 
of proven effective treatments, with an emphasis on practice change and 
consumer outcomes. Such a program should include several development 
phases including identification of a core set of evidence-based 
practices, development of evidence-based implementation, and practice 
improvement toolkits and field-testing of evidence-based 
implementation. This program will provide the foundation for a longer-
term national effort that will have a direct effect on the well-being 
and mental health of older Americans.
    The Community Mental Health Services Block Grant Program 
distributes funds to 59 eligible States and Territories through a 
formula based upon specified economic and demographic factors. 
Applications must include an annual plan for providing comprehensive 
community mental health services to adults with a serious mental 
illness and children with a serious emotional disturbance. Because the 
mental health needs of our Nation's elderly population are often not 
met by existing programs and because the need for such services is 
dramatically and rapidly increasing, AAGP recommends that SAMHSA 
require States' plans to include specific provisions for mental health 
services for older adults. Experience has demonstrated that States do 
not make adequate provisions for older adults. This population, which 
has unique needs, has been neglected in the planning process. Steps 
need to be taken to ensure that adequate mental health services are 
available to them.

               AGENCY FOR HEALTHCARE RESEARCH AND QUALITY

    One of the most valuable resources in our efforts to improve access 
to and the quality of geriatric mental health services is the Agency 
for Healthcare Research and Quality (AHRQ). In recent years the Agency 
has supported important research on mental health topics including 
studies on children's mental health issues, the impact of mental health 
parity on consumers' share of mental health costs, improving care for 
depression in primary care, and cultural issues in the treatment of 
mental illness in minority populations. This work has led to important 
contributions to the mental health literature, and the advancement of 
effective diagnosis and treatment of mental illness. We applaud these 
efforts and urge the Committee to increase support for the critical 
work of this Agency.
    However, we are concerned that the research agenda of the Agency 
has not given more attention to geriatric mental health issues. The 
prevalence of undiagnosed and untreated mental illness among the 
elderly is alarming. Conditions such as depression, anxiety, dementia, 
and substance abuse in older adults are often misdiagnosed or not 
recognized at all by primary and specialty care physicians. There is 
accumulating evidence that depression can exacerbate the effects of 
cardiac disease, cancer, strokes, and diabetes. Research has also shown 
that treatment of mental illness can improve health outcomes for those 
with chronic diseases. Effective treatments for mental illnesses in the 
elderly are available, but without access to physicians and other 
health professionals with the training to identify and treat these 
conditions, far too many seniors fail to receive needed care.
    AAGP believes there is an urgent need to translate findings from 
aging-related biomedical and behavioral research into geriatric mental 
health care. By utilizing the resources of the evidence-based practice 
centers under contract to AHRQ, results from geriatric mental health 
research can be evaluated and translated into findings that will 
improve access, foster appropriate practices, and reduce unnecessary 
and wasteful health care expenditures. We urge the Committee to direct 
AHRQ to support additional research projects focused on the diagnosis 
and treatment of mental illnesses in the geriatric population. We also 
believe a high priority should be given to the dissemination of 
scientific findings about what works best, to encourage physicians and 
other health professionals to adopt ``best practices'' in geriatric 
mental health care.

                               CONCLUSION

    Based on AAGP's assessment of the current need and future 
challenges of late life mental disorders, we submit the following 
fiscal year 2006 funding recommendations:
    1. The current rate of funding for aging grants at NIMH and CMHS is 
inadequate. Funding for NIMH and CMHS aging-related health services 
grants should be increased to be commensurate with current need--at 
least three times their current funding levels. In addition, the 
substantial projected increase in mental disorders in our aging 
population should be reflected in the budget process in terms of dollar 
amount of grants and absolute number of new grants.
    2. To help the country's elderly access necessary mental health 
care, previous years' funding of $5 million for evidence-based mental 
health outreach and treatment for the elderly within CMHS must be 
increased to $20 million.
    3. A fair grant review process will be enhanced by committees with 
specific expertise and dedication to mental health and aging.
    4. Adequate infrastructure and funding within both NIMH and CMHS to 
support the development of initiatives in aging research, to monitor 
the number and quality of applicants for aging research grants, to 
promote funding of meritorious projects, and to manage those grant 
portfolios.
    5. The scope of the recently formed Aging Treatment and Prevention 
Intervention Research Branch at NIMH should be increased to include all 
relevant clinical research, including translational, interventions, and 
disease-based psychopathology, and must receive NIMH's full support so 
it may fulfill its primary mission.
    6. AHRQ should undertake additional research projects focused on 
the diagnosis and treatment of mental illnesses in the geriatric 
population, and dissemination of information on best practices.
    7. Funding for NIAAA must be increased by at least 20 percent to 
enable it to undertake more research and collect more data focused on 
issues such as the link between alcohol use and late-life suicide and 
the impact of alcohol use across the lifespan.
    AAGP strongly believes that the present research infrastructure, 
professional workforce with appropriate geriatric training, health care 
financing mechanisms, and mental health delivery systems are grossly 
inadequate to meet the challenges posed by the expected increase in the 
number of older Americans with mental disorders. Congress must support 
funding for research that addresses the diagnosis and treatment of 
mental illnesses, as well as programs for delivery of geriatric mental 
health services that increase the quality of life for those with late-
life mental illness.
    AAGP looks forward to working with the members of this Subcommittee 
and others in Congress to establish geriatric mental health research 
and services as a priority at NIMH, CMHS, AHRQ and NIAAA.
                                 ______
                                 
    Prepared Statement of the American Autoimmune Related Diseases 
                              Association

    The American Autoimmune Related Diseases Association (AARDA) is the 
only national voluntary health agency advocating for the over 100 
autoimmune diseases as a genetically and clinically interrelated 
family, like cancer. AARDA's aim is to initiate, foster and facilitate 
collaboration in autoimmune awareness, education, advocacy and 
research. AARDA initiated, supports and facilitates the National 
Coalition of Autoimmune Patient Groups (NCAPG), a coalition of 25 
voluntary health agencies focusing on individual autoimmune diseases.
    The family of autoimmune diseases is under-recognized and as a 
result poses a major healthcare problem in the United States. These 
diseases afflict over 22 million Americans, more than twice as many as 
cancer. Treatment costs exceed $120 billion per year and are rising 
rapidly, putting autoimmune disease's financial burden on the same 
level as heart and stroke disease and cancer. Autoimmune diseases are 
one of the top ten leading causes of death in females under the age of 
65.
    Autoimmune diseases are a major cause of chronic disability, 
further increasing their financial burden on society. Well-known 
autoimmune diseases include lupus, rheumatoid arthritis, multiple 
sclerosis, and juvenile (Type 1) diabetes. Lesser-known are 
scleroderma, Crohn's disease, myasthenia gravis, polymyositis, 
autoimmune liver diseases, Sjogren's syndrome and autoimmune blood 
disorders.
    There is a huge disparity in autoimmune disease research funding 
compared to other major disease groups, such as cancer and heart 
disease. And some autoimmune diseases get a disproportionate amount of 
research funding compared to the others.
    Congress addressed these issues in the Children's Health Act of 
2000, which mandated the National Institutes' of Health (NIH) 
Autoimmune Disease Coordinating Committee to develop an integrated 
Autoimmune Diseases Research Plan to address the entire family of 
autoimmune diseases and their common underlying cause--the immune 
system mistakenly attacking healthy body tissue and organs. All NIH 
institutes, the CDCP, VA, FDA and many patients' organizations provided 
input to develop and review the Research Plan. It is an excellent plan 
recommending an integrated cost-effective approach to autoimmune 
disease research and information dissemination.
    Some of the Autoimmune Diseases Research Plan's recommendations 
have been implemented, but most have not. Much remains to be done, 
especially in the new and promising research areas identified in the 
Plan. AARDA strongly supports additional funding for the NIH Autoimmune 
Disease Coordinating Committee to further expand implementation of the 
Autoimmune Diseases Research Plan. This additional funding will allow 
the Coordinating Committee to pursue promising research in the areas of 
environmental triggers, biomarkers and underlying disease mechanisms to 
help identify individuals at risk of developing an autoimmune disease 
and develop techniques to prevent the disease or minimize its impact.
    AARDA respectfully requests Congress to appropriate $40 million for 
the NIH Autoimmune Disease Coordinating Committee to expand 
implementation of the Autoimmune Diseases Research Plan to study 
environmental triggers of autoimmune disease. This research will pay 
for itself many times over by helping to reduce the major financial 
burden the family of autoimmune diseases places on our country.
    On behalf of the many millions afflicted with an autoimmune disease 
and their families, thank you for the opportunity to address this 
important issue as Congress develops the Labor, HHS fiscal year 2006 
budget. For More information, contact Virginia T. Ladd, Director, 
American Autoimmune Related Diseases Assoc., 22100 Gratiot, Eastpointe, 
MI., 48021, 586-776-3900 (p) 586-776-3903 (F)
                                 ______
                                 
           Prepared Statement of the American Brain Coalition

                 WHAT IS THE AMERICAN BRAIN COALITION?

    The American Brain Coalition (ABC) is a nonprofit organization that 
seeks to reduce the burden of brain disorders and advance the 
understanding of the functions of the brain. ABC, unlike any other 
organization, brings together all types of organizations representing 
the 50 million individuals affected by brain disorders. This includes 
the afflicted patients, the families of those that suffer, the 
caregivers, and the professionals that research and treat diseases of 
the brain.
    ABCs' goals are to: (1) promote research funding and progress 
towards cures, (2) help to build a healthcare system that is more 
responsive to people with both acute and chronic brain disorders, and 
(3) advance public understanding about the causes, impacts, and 
consequences of neurologic and psychiatric illness in our society.
    The brain is the center of human existence, and the most complex 
living structure known. As such, ABC members have a broad range of 
interests. Among others, the coalition includes organizations and 
individuals that:
  --are clinicians who treat neurological diseases
  --are scientists who research the brain, including the neurological 
        and psychiatric disorders that affect it
  --investigate basic and clinical aspects of epilepsy
  --fund research on Rett Syndrome, a debilitating neurological 
        disorder
  --are pioneers in educational and vocational training for the 
        mentally retarded
  --have family members affected by mental health conditions, such as 
        depression, schizophrenia, and obsessive-compulsive disorder
  --are affected by Parkinson's disease and essential tremor

              CONGRESSIONAL SUPPORT ACCELERATES DISCOVERY

    The National Institutes of Health (NIH), the world's premier 
medical research enterprise, is leading the way in research related to 
the brain. Thanks to this subcommittee, Congress held to its commitment 
to double the budget of the NIH in the late 1990s and early 2000s. The 
primary goal for the added funds was to discover better treatments and 
cures for human disease. Since then, scientists have amassed a wealth 
of medical knowledge. Today, researchers have a greater understanding 
of how the brain and nervous system function due to NIH-funded 
research. On behalf of the millions of Americans suffering from a 
disorder of the brain, ABC thanks the Chairman and Ranking Member for 
their continued support of this life altering research.
    Many recent scientific discoveries, including those in neurology 
and psychiatry, have just begun to show their potential. Some 
accomplishments that are a direct result of NIH research include:
  --The development of drugs that reduce the severity of symptoms for 
        those suffering with multiple sclerosis and Parkinson's disease
  --The identification of stroke treatment and prevention methods
  --The discovery of a new class of anti-depressants that produce fewer 
        side effects than their predecessors
  --The creation of new drugs to help prevent epileptic seizures
  --The expansion of treatments for the psychotic symptoms of 
        schizophrenia
    Insights into the biology of schizophrenia, post-traumatic stress 
disorder, and other diseases have led to the development of enhanced 
diagnostic techniques, better prevention methods, and more effective 
treatments. Simply put: the result of Congressional support for 
research leads to improved patient care.

                WHAT COMES NEXT? THE FUTURE OF RESEARCH

    ABC supports NIH in its entirety, with a more specific interest in 
the institutes and centers that focus on diseases and disorders of the 
brain and nervous system. Because the brain affects all parts of the 
body, brain research is broad and must be conducted across institutes 
in order to fully understand the diseases that affect so many 
Americans.
    The NIH Neuroscience Blueprint is a framework to enhance 
cooperation among 15 NIH institutes and centers that support this 
research. Over the past 10 years, driven by the science, the NIH 
neuroscience institutes and centers have increasingly joined forces 
through initiatives and working groups focused on specific disorders. 
The Blueprint builds on this foundation, making collaboration an 
everyday part of how the NIH does business in neuroscience. By pooling 
resources and expertise, the Blueprint can take advantage of economies 
of scale, confront challenges too large for any single institute, and 
develop research tools and infrastructure that will serve the entire 
neuroscience community.
    The Neuroscience Blueprint encourages the collaboration necessary 
in order to advance basic science and to develop new more effective 
bedside treatments. The following diseases, along with many others, 
have the potential to be greatly affected from this research.
    1. Stroke.--Research has already led to the development of more 
effective stroke treatments, the identification of new prevention 
methods, and the creation of improved rehabilitation techniques. 
Despite much progress in stroke research over the past decade, much 
remains to be done.
    With continued funding, therapies to reverse paralysis of limbs may 
be possible. A preliminary analysis indicates that the resulting 
financial benefits from reduced medical care, a quicker return to work, 
and improved quality of life outweigh the costs of therapy. Future 
studies seek to refine the technique, called constraint-induced 
movement therapy to further improve outcomes and lower costs.
    2. Epilepsy.--Research in the field of Epilepsy has already led to 
the discovery of genetic mutations that play a role in how seizures 
begin. Additionally, research has aided in the development of a new 
generation of antiepileptic drugs and better brain scanning techniques 
that assist in diagnosis.
    With continued funding, additional drug therapies might be 
developed to control seizures. Currently, up to one-third of patients 
are resistant to drug therapy. More research must be done in order to 
improve the quality of life for these people. One promising approach 
may be to use gene therapy to modify the excitability of hyperactive 
brain cell circuits. Additionally, increased funding might aid in the 
development of devices that are implanted into the brain that could 
forewarn doctors and patients of an impending seizure. These tiny 
devices could then deliver the drugs directly to the epileptic brain 
region in doses that could be regulated by the patient or doctor. Much 
more work is needed before such a system could be widely used.
    3. Bipolar Disorder.--Past funding from NIH and the Department of 
Veterans Affairs has helped scientists make great progress in 
understanding bipolar disorder. Today, we know that bipolar disorder is 
a biologically based disorder, and not a result of a weak personal 
character. Using the latest brain imaging techniques, scientists have 
discovered that the brain function and structure in patients with 
bipolar disorder differs markedly from that in people without the 
illness.
    Continued funding for research could lead to the development of 
tests for earlier diagnosis and treatment, as well as drug therapies to 
prevent or reverse the progressive loss of brain cells that occurs with 
bipolar disorder. Already, scientists are exploring the possibility for 
low-dose lithium as a preventative measure against atrophy and loss of 
cells. Research on lithium may prove advantageous for a variety of 
diseases, including schizophrenia and Alzheimer's disease.
    Only with continued funding will scientists be able to bring hope 
to the millions of Americans suffering from a brain disorder.

BEYOND HELPING PEOPLE: FEDERAL INVESTMENTS IN RESEARCH ARE ECONOMICALLY 
                               BENEFICIAL

    Not only does research save lives, but it is a good investment for 
the future of America. We know that illness is expensive. Depressive 
diseases alone cost U.S. businesses $83 billion in medical 
expenditures, suicide-related costs, absences from work, and reduced 
productivity while at work. The annual cost of Alzheimer's disease in 
the United States is over $100 billion, with more that $30 billion of 
that amount paid out by Medicare. As the baby boomers age, without 
effective therapy, the number of people affected by Alzheimer's will 
quadruple. This number is only expected to increase.
    NIH-funded research could alleviate some of the financial strains 
that brain disorders place on businesses, government, and families. For 
example, a one month delay in admitting Alzheimer's patients to nursing 
homes could save $1billion per year. Without additional research, the 
economic burden placed on U.S. resources will be exacerbated.
    In addition to helping control costs, the federal investment in 
research helps stimulate local economies. NIH dollars are sent to every 
state in the country, helping to employ thousands of people. According 
to the Bureau of Labor Statistics, nearly 1 million people in the 
United States are employed in the biosciences. This number is projected 
to grow at an annual rate of 13 percent.

                             RECOMMENDATION

    As the Subcommittee considers the fiscal year 2006 appropriations 
for the Department of Health and Human Services, we urge you to support 
a 6 percent increase in funding for the National Institutes of Health 
in order to sustain the pace of recent discoveries.
    Treatments for diseases and disorders of the brain will only be 
possible if the NIH, the world's leading medical research enterprise, 
has a longstanding commitment from Congress.
    ABC's request is based on the following information:
  --$1 billion is needed to cover biomedical research inflation, which 
        is projected to be 3.5 percent;
  --$560 million is needed to replace the evaluation set-aside (an 
        amount taken from each institute), which this year amounted to 
        2.4 percent (it used to be 1 percent); and
  --The total number of research project grants (RPGs) is declining by 
        402 from what it was in fiscal year 2005.
    Thank you for the opportunity to provide testimony to this 
Subcommittee.
                                 ______
                                 
        Prepared Statement of the American College of Cardiology

    More than 70 million Americans are living with cardiovascular 
disease, with more than 900,000 of them dying this year from disease-
related complications. In fact, heart disease claims more lives than 
cancer, diabetes, and chronic respiratory diseases combined. As 
physicians toil to keep these patients alive, another group of 
individuals is working just as hard to fight the ravages of heart 
disease: Medical researchers.
    The American College of Cardiology (ACC), a 33,000-member nonprofit 
professional medical society advocating for quality cardiovascular 
care, supports increased federal funding of medical research and 
urgently calls on Congress to continue to invest in future 
cardiovascular care.
    As with any financial outlay, there needs to be a healthy return on 
investment. The same holds true for medical research, and the ACC 
believes the data speaks loudly. Between 1982 and 2002, death rates 
attributed to cardiovascular diseases declined by 37 percent. This 
remarkable achievement can be attributed to clinically proven 
treatments and techniques for managing heart disease. These life-saving 
technology advances and treatments originate with cutting-edge 
research. Without federally-funded clinical trials, there would not be 
stents or statins, ICDs or AEDs, and millions more Americans would die 
prematurely from cardiovascular disease.
    Each year, agencies such as the National Institutes of Health (NIH) 
release groundbreaking studies that fundamentally change the course of 
medicine. This year was no exception. Initially presented at the ACC's 
Annual Scientific Session in early March and published March 31, 2005, 
in The New England Journal of Medicine, The Women's Health Study has 
left its mark on the cardiovascular world. This 10-year study of 40,000 
healthy women showed that aspirin did not reduce the risk of major 
cardiovascular events, a stark contrast to the effects of aspirin in 
men. In addition, researchers concluded that many women, especially 
those 65 and older, may benefit from taking low-dose aspirin every 
other day with the primary goal to prevent stroke. The results of this 
study hold immediate implications for the treatment of women at risk 
for heart disease, but also point to the broader role of understanding 
and adjusting for gender in the development of medical regimens.
    Compelling cardiovascular research conducted by the NIH and the 
National Heart, Lung and Blood Institute (NHLBI) is critical to 
physicians winning the fight against heart disease. The ACC does not 
believe that President Bush's proposed fiscal year 2006 budget reflects 
the commitment needed to these critical research institutions. Under 
the President's plan, the National Institutes of Health (NIH) would 
receive a 0.5 percent increase, which is significantly less than the 
current rate of inflation. As one of 27 institutes falling under the 
NIH umbrella, the NHLBI stands to receive a pittance of this modest 
increase. The Centers for Disease Control and Prevention (CDC) fare 
even worse, facing millions of dollars in actual funding cuts for 
fiscal year 2006.
    In order to continue life-saving cardiovascular research and 
education, the ACC supports the following fiscal year 2006 
appropriations funding levels:
  --$30 billion for the NIH, including $2.3 billion for heart research 
        and $341 million for stroke research
  --$3.1 billion for the NHLBI, including $1.9 billion for heart and 
        stroke-related research
  --$55.6 million for the CDC's Heart Disease and Stroke Prevention 
        Program
    These allocations will enable core cardiovascular research that 
improves clinical outcomes and quality of care. As the medical 
landscape continues to shift with the introduction of new technology 
and more complex caseloads, evidence-based research serves as the 
foundation of clinical guidelines that direct physician practice. The 
ACC draws on federally-funded research to craft documents that set the 
standard for cardiovascular care and guide the practice of our members 
worldwide.
    Adequately funding research today will reap dividends tomorrow, 
upon which the federal government through its Centers for Medicare & 
Medicaid Services (CMS) will undoubtedly benefit. Even now, CMS is 
sponsoring pilot projects designed to pay physicians based on evidence-
driven performance. Advances in medical protocols derived from 
federally underwritten research will become the backbone for this push 
to deliver better, more cost-effective patient care.
    By investing in medical research now, Congress can help at-risk 
patients minimize the impact of cardiovascular disease and improve 
quality of care for more than 70 million heart patients. The ACC 
encourages the subcommittee to continue its support of federally-funded 
cardiovascular research by supplying federal agencies with the 
resources to continue their life-saving work. Thank you for permitting 
the ACC to share its views on this important topic.
                                 ______
                                 
   Prepared Statement of the American Dental Hygienists' Association

    The American Dental Hygienists' Association (ADHA) appreciates this 
opportunity to submit written testimony regarding fiscal year 2006 
appropriations for the Department of Health and Human Services.
    ADHA is the largest national organization representing the 
professional interests of the more than 120,000 dental hygienists 
across the country. Dental hygienists are preventive oral health 
professionals who are licensed in each of the fifty states. As 
prevention specialists, dental hygienists understand that recognizing 
the connection between oral health and total health can prevent 
disease, treat problems while they are still manageable, and conserve 
critical health care dollars. Dental hygienists are committed to 
improving the nation's oral health, a fundamental part of total health.
    Indeed, in order to improve access to oral health care, ADHA is 
working to establish a new oral health care provider, the ``Advanced 
Dental Hygiene Practitioner.'' This new provider would deliver 
preventive, therapeutic and restorative services directly to 
underserved Americans. Please visit the ADHA web site at www.adha.org 
for more information.

U.S. SURGEON GENERAL REPORT ON ORAL HEALTH IN AMERICA AND THE NATIONAL 
                       ORAL HEALTH CALL TO ACTION

    In May 2000, the U.S. Surgeon General issued Oral Health in 
America: A Report of the Surgeon General. This landmark report confirms 
what dental hygienists have long known: that oral health is an integral 
part of total health and that good oral health can be achieved. The 
Surgeon General's Report on Oral Health challenges all of us--in both 
the public and private sectors--to address the compelling evidence that 
not all Americans have achieved the same level of oral health and well-
being. The Report describes a ``silent epidemic'' of oral diseases, 
which affect our most vulnerable citizens--poor children, the elderly 
and many members of racial and ethnic minority groups.
    ADHA suggests that one step that needs to be taken is to improve 
access to the preventive oral health care services provided by dental 
hygienists. This is important because unlike most medical conditions, 
the three most common oral diseases--dental caries (tooth decay), 
gingivitis (gum disease) and periodontitis (advanced gum and bone 
disease)--are proven to be preventable with the provision of regular 
oral health care. Despite this prevention capability, tooth decay--
which is an infectious transmissible disease--still affects more than 
half of all children by second grade. Clearly, more must be done to 
increase children's access to oral health care services.
    While the profession of dental hygiene was founded in 1923 as a 
school-based profession, today the provision of dental hygiene services 
is largely tied to the private dental office. Increased utilization of 
dental hygienists in schools, nursing homes, and other sites--with 
appropriate referral mechanisms in place to dentists--will improve 
access to needed preventive oral health services. This increased access 
to preventive oral health services will likely result in decreased oral 
health care costs per capita and, more importantly, improvements in 
oral and total health.
    As the General Accounting Office (GAO) confirmed in two recent 
separate reports to Congress, ``dental disease is a chronic problem 
among many low-income and vulnerable populations'' and ``poor children 
have five times more untreated dental caries (cavities) than children 
in higher-income families.'' The GAO further found that the major 
factor contributing to the low use of dental services among low-income 
persons who have coverage for dental services is ``finding dentists to 
treat them.'' Increased utilization of dental hygiene services--
appropriately linked to the services of dentists--is critical to 
addressing the nation's crisis in access to oral health care for 
vulnerable populations. Indeed, ADHA is committed to working with the 
Congress to improve access to oral health care services, particularly 
for children eligible for Medicaid and the State Children's Health 
Insurance Program (SCHIP). ADHA urges this Subcommittee and all members 
of Congress to support the Medicaid and SCHIP programs. ADHA strongly 
supports the Smith-Bingaman amendment in the fiscal year 2006 Senate 
Budget Resolution that strikes cuts to the Medicaid program and calls 
for a Medicaid Commission to carefully study and recommend changes to 
the program.

         NATIONAL INSTITUTE OF DENTAL AND CRANIOFACIAL RESEARCH

    As the Surgeon General's Report on Oral Health so clearly 
demonstrates, the nation's oral health can and must be further 
improved. The National Institute of Dental and Craniofacial Research 
(NIDCR) is the nation's focal point for oral health research and 
NIDCR's work has yielded significant advancements in oral health.
    Over the past 50 years, our nation's investment in dental and 
craniofacial research has yielded tremendous advances in American 
public health. Some of the often-cited examples include a sharp 
reduction in the once rampant rate of dental caries and tooth loss, 
improved care of all aspects of gum (periodontal) diseases, and the 
effective management of oral pain. In its ongoing quest to improve the 
nation's oral health, a fundamental part of overall health and general 
well-being, NIDCR is, for example, working to realize the potential of 
salivary diagnostics. As NIDCR Director Lawrence A. Tabak, DDS, PhD 
explains, ``scientists have long recognized that our saliva serves as a 
mirror' of the body's health, in that it contains the full repertoire 
of proteins, hormones, antibodies, and other molecular analytes that 
are frequently measured in standard blood tests.''
    NIDCR's work in dental research has not only resulted in better 
oral health for the nation, it has also helped curb increases in oral 
health care costs. Americans save nearly $4 billion annually in dental 
bills because of advances in dental research and an increased emphasis 
on preventive oral health care. To enable NIDCR to continue and to 
build upon its important research mission, ADHA joins with other groups 
in the oral health community to recommend that NIDCR be funded at $420 
million for fiscal year 2006. ADHA further urges that NIDCR be 
preserved as an independent institute in any future NIH reorganization.

 DENTAL HEALTH IMPROVEMENT ACT, A COMPONENT OF THE HEALTH CARE SAFETY 
                       NET AMENDMENTS ACT OF 2002

    ADHA is pleased to see the increasing recognition among federal 
policymakers of the importance of oral health to overall health and 
well-being. A primary illustration of this appreciation for the link 
between oral health and general health is the Dental Health Improvement 
Act, which was passed by Congress as part of the Health Care Safety Net 
Amendments Act of 2002 (Public Law 107-261). This important legislation 
will assist states in addressing the crisis in access to oral health 
services. ADHA joins with others in the oral health community to 
recommend $10 million to fund the oral health programs and initiatives 
contained within the Act.

            CENTERS FOR DISEASE CONTROL ORAL HEALTH PROGRAM

    ADHA would also like to lend its support to the Centers for Disease 
Control and Prevention (CDC) Oral Health Program. ADHA joins with other 
dental groups in urging a budget of $18 million for the CDC Oral Health 
Program. This funding level will enable the Oral Health Program to 
continue its vital work to control and prevent oral disease, including 
its important work in the area of community water fluoridation and 
school-based dental sealant programs. ADHA also requests $130 million 
for the CDC prevention block grant. Last year, approximately $3.5 
million in block grant monies flowed to the states for critical oral 
health projects such as replacement of fluoridation equipment.

            RYAN WHITE HIV/AIDS DENTAL REIMBURSEMENT PROGRAM

    Included in the Ryan White CARE Act is a dental reimbursement 
program that assists in meeting the oral health needs of people living 
with HIV/AIDS, most of whose care is not covered under existing federal 
and state assistance programs. The dental reimbursement program 
provides participating institutions with partial reimbursement for the 
cost of providing oral health care services to low income people living 
with HIV and AIDS. In 1999, oral health care was provided to more than 
65,000 patients under the program.
    The ``Ryan White CARE Act Amendments of 2000'' rendered--for the 
first time--dental hygiene programs eligible for the dental 
reimbursement program. While there are only 55 dental schools in the 
United States, there are presently 279 accredited dental hygiene 
education programs in the United States. In fact, all states have at 
least one dental hygiene education program.
    ADHA joins with the American Dental Education Association in 
recommending $19 million for this important program. ADHA further urges 
this Subcommittee to direct HRSA to work to actively encourage and 
facilitate the participation of dental hygiene programs in the Ryan 
White HIV/AIDS reimbursement effort.

                   MATERNAL AND CHILD HEALTH PROGRAM

    The Maternal and Child Health Block Grant Program provides vital 
support and services that improve the health of women and children. It 
is critical that the oral health component of this program be 
strengthened. This is important because, for example, research 
increasingly recognizes the link between severe periodontal disease in 
pregnant women and pre-term low birth weight babies. ADHA strongly 
supports the MCH programs and urges full funding for fiscal year 2006.

                      HEALTH PROFESSIONS EDUCATION

    ADHA supports the important work of Title VII of the Public Health 
Service Act, in particular, the Allied Health Project Grants and the 
Scholarships for Disadvantaged Students Program. Allied health 
disciplines constitute fully 60 percent of the health care work force. 
The Scholarships Program seeks to recruit and retain minority and 
disadvantaged students.
    ADHA joins the Association of Schools of Allied Health Professions 
in recommending $20 million for Allied Health Project Grants and full 
funding for the Scholarships for Disadvantaged Students program. With 
the acknowledged need for cost-effective health care providers, it is 
time to augment funding for and recognition of these important allied 
health programs. ADHA further urges full funding for the Centers for 
Excellence Program, the Faculty Loan Repayment Program and the Health 
Careers Opportunity Program.

                     NATIONAL HEALTH SERVICE CORPS

    ADHA strongly supports the National Health Service Corps (NHSC) and 
its Scholarship and Loan Forgiveness Programs. Scholarships and loan 
forgiveness provide vital assistance to students entering the health 
professions. ADHA urges that the committee again direct the NHSC to 
increase the participation of dental health providers, dentists and 
dental hygienists alike. This is important because too few Americans--
particularly low-income Americans--regularly access needed oral health 
services. ADHA supports $213 million for this important effort.

                 INDIAN HEALTH SERVICE DENTAL PROGRAMS

    American Indians and Alaska Natives suffer disproportionately from 
poor oral health. Indeed, 75 percent of American Indian and Alaska 
Native children aged 2-5 years old experience untreated dental decay 
(caries). The prevalence of dental disease only increases with age. A 
staggering 91 percent of American Indian and Alaska Native children 
aged 15-19 years old experience tooth decay. In fiscal year 2004, the 
proportion of American Indian and Alaska Natives with access to dental 
care was only 24 percent. Presently, there are 109 vacancies in the IHS 
dental program. Clearly, there is much to be done to improve access to 
oral health services for Alaska Natives and American Indians. 
Accordingly, ADHA strongly supports the Community Health Aide Program, 
including the use of dental health aide therapists. ADHA joins with the 
American Academy of Pediatrics and the American Dental Association in 
recommending $124 million for IHS dental programs.

                               CONCLUSION

    In closing, the American Dental Hygienists' Association appreciates 
the important contributions this Subcommittee has made in improving the 
quality and availability of oral health services throughout the 
country. ADHA is committed to working with this Subcommittee--and all 
Members of Congress--to improve the nation's oral health which, as Oral 
Health in America: A Report of the Surgeon General so rightly 
recognizes, is a vital part of overall health and well-being.
    Please contact our Washington Counsel, Karen Sealander of McDermott 
Will & Emery (202/756-8024 or [email protected]), with questions or 
for further information. Thank you for this opportunity to submit the 
views of the American Dental Hygienists' Association.

                                 ______
                                 
        Prepared Statement of the American Diabetes Association

    Thank you for the opportunity to submit testimony on the importance 
of federal funding for diabetes programs at the Centers for Disease 
Control and Prevention (CDC) and diabetes research at the National 
Institutes of Health (NIH).
    As the nation's leading nonprofit health organization providing 
diabetes research, information and advocacy, the American Diabetes 
Association feels strongly that federal funding for diabetes prevention 
and research efforts is critical not only for the 18.2 million 
Americans who currently have diabetes, but also for the more than 40 
million who have a condition known as ``pre-diabetes.''
    Diabetes is a serious disease, and is a contributing and underlying 
cause of many of the diseases on which the federal government spends 
the most health care dollars. In addition to the $132 billion in 2002 
dollars in direct and indirect costs spent solely on diabetes each 
year, diabetes is a significant cause of heart disease (which costs our 
nation $183.1 billion each year), a significant cause of stroke ($43.3 
billion each year), and the leading cause of kidney disease ($40.3 
billion). Diabetes is also the leading cause of adult-onset blindness 
and lower limb amputations.
    Approximately 42,000 people suffering from diabetes live in each 
congressional district and the number of people living with diabetes in 
this country is growing at a shocking rate. Between 1990 and 2001, 
diabetes prevalence in the United States has increased by more than 60 
percent. The number of Americans with diabetes is now growing at a rate 
of 8 percent per year and is the single most prevalent chronic illness 
among children. Because the systemic damage diabetes imposes throughout 
the body, it is no surprise that the life expectancy of a person with 
the disease averages 10-15 years less than that of the general 
population.
    As the statistics listed above illustrate, we are facing an 
epidemic of diabetes in this country, which if left unchecked could 
have significant implications for many future generations. The picture, 
however, is not without hope. We can stem the tide of this disease, but 
to do so requires a renewed federal commitment not only to research, 
but also to prevention.
    The Association appreciates the increased attention by Congress to 
diabetes research at the National Institutes of Health (NIH) in recent 
years. While there is not yet a cure for diabetes, researchers at NIH 
are working on a variety of projects that represent hope for the 
millions of individuals with type 1 and type 2 diabetes. The 
Association strongly encourages you to provide a 6 percent increase to 
the NIH to fulfill this promise. Unfortunately, while the death rate 
due to diabetes has increased by more than 40 percent in recent years, 
diabetes research funding has not kept pace. Indeed, from 1987-2001, 
appropriated diabetes funding as a share of the overall NIH budget has 
dropped by more than 20 percent (from 3.9 percent to 2.9 percent). Over 
the last 4 years, Congress has begun to address this discrepancy. We 
respectfully ask you to continue this commitment.
    While the NIH continues to work towards finding a cure, we must 
also adequately fund the diabetes prevention and outreach work being 
done at the Centers for Disease Control and Prevention. Therefore, we 
are requesting:
  --At least a 10 percent increase over fiscal year 2005 levels for the 
        CDC's Center on Chronic Disease Prevention and Health, 
        including an additional $10 million increase for the CDC's 
        Division of Diabetes Translation (DDT); and
  --Restoration of the Preventive Health & Health Services Block Grant.
    The CDC's Division of Diabetes Translation is critical to our 
national efforts to prevent and manage diabetes because they translate 
the research that has already been done to real programs at the 
community level. Currently, for every $1 that diabetes costs this 
country, the federal government invests less than $.01 to help 
Americans prevent and manage this deadly disease. This dynamic must be 
changed. While the Association strongly believes that significant 
funding is needed to fully fund programs in all 50 states, our request 
of $10 million recognizes the current budget realities.
    In 2004 DDT provided support for more than 50 state- and 
territorial-based Diabetes Prevention and Control Programs (DPCPs) to 
increase outreach and education, and reduce the complications 
associated with diabetes. However, funding constraints required DDT to 
provide severely limited support to 24 states, 8 territories, and D.C. 
This level of funding, referred to as ``capacity building,'' allows a 
state to do surveillance, but is not enough for the state to do much--
or anything--in the way of intervention.
    DDT was able to provide the higher level of support, ``basic 
implementation,'' to the other 26 states. At the basic implementation 
level, states are able to devise and execute community-level programs. 
With an additional $10 million over fiscal year 2005 funding levels, an 
additional 7 states could start to receive the substantial benefits of 
basic implementation programs.
    The basic implementation programs undoubtedly make a major impact 
on local communities. For example, Daviess County in Kentucky is using 
their DPCP funding to support a community-based program that has 
trained more than 500 health professionals through professional 
education programs, screened and referred more than 1,500 people for 
diabetes through innovative events designed to reach the neediest 
individuals, provides test strips and emergency medications to more 
than 150 individuals annually, and lead comprehensive media and 
outreach campaigns to educate the public to recognize the risk factors 
for diabetes. While this example highlights the accomplishments from 
only one county in one state; it demonstrates the broad approach 
enabled by the basic implementation programs. Our goal is to make this 
a reality for the rest of the country, so that communities have the 
ability to invest in their future by investing in diabetes prevention 
and education.
    Without fully-funded diabetes programs and projects in all parts of 
the country, it will be exceedingly difficult -if not impossible--to 
control the escalating costs associated with diabetic complications and 
to stem the epidemic rise in diabetes rates. State DPCPs, when provided 
with enough funding, are proven programs that have been extremely 
successful in helping Americans prevent and manage their diabetes. In 
the Division of Diabetes Translation Program Review fiscal year 2004, 
the CDC stated, ``The Basic Implementation DPCPs serve as the backbone 
for our growing primary prevention efforts. These state programs are 
the key elements to our success in meeting the challenges of 
controlling and preventing diabetes.'' For example, in Minnesota, the 
DPCP initiated a unified, statewide strategic plan for combating 
diabetes which resulted in more than 800,000 Minnesotans getting 
educational messages through television, radio, print, and web 
coverage. In Utah, innovative messaging such as bus wraps on public 
transportation are being used to inform hard-to-reach, at-risk 
populations of the NDEP messages, ``You are the Heart of Your Family'' 
and ``Control Your Diabetes. For Life.'' Americans in every state 
should have access to such quality programs. Unfortunately, the 
Division's fiscal year 2005 budget of just over $63 million, and the 
President's request for near flat-funding in fiscal year 2006, will 
prevent more counties from implementing programs such as the one 
described above.
    In addition to DPCP, the CDC's Division of Diabetes Translation 
also conducts other activities to help people currently living with 
diabetes. For example, CDC works with NIH to jointly sponsor the 
National Diabetes Education Program (NDEP), which seeks to improve the 
treatment and outcomes of people with diabetes, promote early 
detection, and prevent the onset of diabetes. The CDC is also currently 
working to develop a National Public Health Vision Loss Prevention 
Program that will investigate the economic burden and strength the 
surveillance and research of this all-to-common complication of 
diabetes. In addition, CDC funds work at the National Diabetes 
Laboratory to support scientific studies that will improve the lives of 
people with diabetes. In fiscal year 2004, the Division of Diabetes 
Translation alone published 46 manuscripts on the care, prevention, and 
science of diabetes.
    The Association is also supportive of restoration of the CDC's 
Preventive Health & Health Services Block Grant (PBG). The PBG, which 
allows states to develop innovative health programs at the community 
level, received $132 million in FYO5, but is currently slated for no 
funding for fiscal year 2006. These programs have been very successful. 
For example, New York State uses theirs to help fund statewide regional 
partnerships that provide much needed diabetes prevention and control 
activities for medically underserved individuals and communities. 
Currently, about $2.2 million goes toward diabetes-related programs. 
While this is a relatively small amount, it is nonetheless important to 
the communities it is currently helping.
    The Association, and the millions of individuals with diabetes we 
represent, firmly believes that we could rapidly move toward curing, 
preventing, and managing this disease by increasing funding for 
diabetes programs and research both at CDC and NIH. Your leadership is 
essential to accomplishing this goal. As you are considering fiscal 
year 2006 funding, we ask you to remember that chronic diseases, 
including diabetes, account for nearly 70 percent of all health care 
costs as well as 70 percent of all deaths annually. Unfortunately, less 
than $l.25 per person is directed toward public health interventions 
focused on preventing the debilitating effects associated with chronic 
diseases, demonstrating that federal investment in chronic disease 
prevention remains grossly inadequate. We cannot ignore those Americans 
who are currently living with diabetes and other diseases.
    In closing, the American Diabetes Association strongly urges the 
Subcommittee and Congress to provide a 10 percent increase for the 
CDC's Center on Chronic Disease Prevention and Health, including a $10 
million increase for the CDC's Division of Diabetes Translation, and to 
restore the Preventive Health & Health Services Block Grant. Providing 
this funding would be an important step towards empowering states to 
fight diabetes at the community level. Additionally, we urge the 
Subcommittee to increase NIH funding by 6 percent to allow for an 
increased commitment to diabetes research.
    On behalf of the 18.2 million Americans with diabetes--a disease 
that crosses gender, race, ethnicity and political party; a disease 
that is among the most costly, debilitating, deadly and prevalent in 
our nation; and a disease that is exploding throughout our nation--
thank you for the opportunity to submit this testimony. The American 
Diabetes Association is prepared to answer any questions you might have 
on these important issues.
                                 ______
                                 
          Prepared Statement of the American Lung Association

                    SUMMARY: FUNDING RECOMMENDATIONS
                        [In millions of dollars]
------------------------------------------------------------------------
                           Agency                               Amount
------------------------------------------------------------------------
National Institutes of Health..............................         30.1
    National Heart, Lung, and Blood Institute..............      3,117.4
    National Institute of Allergy and Infectious Disease...      4,667.1
    National Institute of Environmental Health Sciences....        680.0
    National Institute of Nursing Research.................        146.2
    Fogarty International Center...........................         71.0
Centers for Disease Control and Prevention.................      8,500.0
    National Institute for Occupational Safety and Health..        326.0
    Office on Smoking and Health...........................        130.0
    Environmental Health: Asthma Activities................         70.0
    Tuberculosis Control Programs..........................        215.0
------------------------------------------------------------------------

              SUMMARY OF FISCAL YEAR 2006 RECOMMENDATIONS

    American Lung Association (ALA) is pleased to present our 
recommendations for programs in the Labor Health and Human Services and 
Education Appropriations Subcommittee purview.
    The American Lung Association is the oldest voluntary health 
organization in the United States, with a National Office, constituent, 
and affiliate associations around the country. Founded in 1904 to fight 
tuberculosis, the American Lung Association today fights lung disease 
in all its forms, with special emphasis on asthma, tobacco control and 
environmental health. The Lung Association is funded by contributions 
from the public, along with gifts and grants from corporations, 
foundations and government agencies. The American Lung Association 
achieves its many successes through the work of thousands of committed 
volunteers and staff.

                       MAGNITUDE OF LUNG DISEASE

    Each year, an estimated 341,500 Americans die of lung disease. Lung 
disease is America's number three killer, responsible for 1 in every 7 
deaths. More than 25 million Americans suffer from a chronic lung 
disease. This year, lung diseases cost the U.S. economy an estimated 
$94.9 billion.
    Lung diseases represent a spectrum of chronic and acute conditions 
that interfere with the lung's ability to extract oxygen from the 
atmosphere, protect against environmental or biological challenges and 
regulate a number of metabolic processes. Lung diseases include: 
chronic obstructive pulmonary disease, lung cancer, tuberculosis, 
pneumonia, influenza, sleep disordered breathing, pediatric lung 
disorders, occupational lung disease, sarcoidosis and asthma.
    Mr. Chairman, while our comments today will focus on selected parts 
of the Public Health Service; the American Lung Association is firmly 
committed to appropriate funding for all sectors of our nation's public 
health infrastructure.

                                  COPD

    Chronic Obstructive Pulmonary Disease, or COPD, is a growing health 
problem. Yet it remains relatively unknown to most Americans and much 
of the research community. COPD is an umbrella term used to describe 
the airflow obstruction associated mainly with emphysema and chronic 
bronchitis. COPD is the fourth leading cause of death in the United 
States and worldwide.
    While the exact prevalence of COPD is not well defined, it affects 
tens of millions of Americans and can be an extremely debilitating 
condition. It has been estimated that 16 million patients have been 
diagnosed with some form of COPD and as many as 16 million more are 
undiagnosed. New government data based on a 1998 prevalence survey 
suggest that 3 million Americans have been diagnosed with emphysema and 
9 million are diagnosed with chronic bronchitis. Emphysema affects more 
men than women, while chronic bronchitis affects more women than men. 
In 1999, 119,524 people in the United States died of COPD. During the 
period 1979-1998, the number of deaths from COPD rose almost 126 
percent. COPD costs the U.S. economy an estimated $30.4 billion a year.
    Today, COPD is treatable but not curable. Fortunately, promising 
research is on the horizon for COPD patients. Research in the genetic 
susceptibility underlying COPD is making progress. Research is also 
showing promise for reversing the damage to lung tissue caused by COPD.
    Despite these promising research leads, the American Lung 
Association feels that research resources committed to COPD are not 
commensurate with the impact COPD has on the United States and the 
world. The American Lung Association strongly recommends that the NIH 
and other federal research programs commit additional resources to COPD 
research programs.

                                 ASTHMA

    Asthma is a chronic lung disease in which the bronchial tubes of 
the lungs become swollen and narrowed, preventing air from getting into 
or out of the lung. A broad range of environmental triggers that vary 
from one asthma-sufferer to another causes these obstructive spasms of 
the bronchi.
    Asthma is on the rise. A 1998 survey found that an estimated 26 
million Americans (including 8.6 million children under the age of 18) 
have at some point in their lifetime been told by their doctor that 
they have asthma. Rates are increasing for all ethnic groups and 
especially for African American and Hispanic children. While some 
children appear to out grow their asthma when they reach adulthood, 75 
percent will require life-long treatment and monitoring of their 
condition.
    Asthma is expensive. The growth in the prevalence of asthma will 
have a significant impact on our nation's health expenditures, 
especially Medicaid. Currently, asthma costs the United States $12.7 
billion annually, including $8.1 billion in direct medical 
expenditures. Asthma attacks bring nearly two million people to the 
emergency room each year. Asthma also kills. In 1998, 5,438 people in 
the United States died as a result of an asthma attack. That is a 109 
percent increase from 1979. A disproportionate share of these deaths 
occurred in African American families.

Federal Response to Asthma
    The federal response to asthma has three components: research, 
programs and planning. We are pleased to report that, with support from 
the subcommittee, we are making progress on all three fronts.
            Asthma Research
    As the prevalence of asthma has grown, so has asthma research. 
Researchers are developing better ways to treat and manage chronic 
asthma. Research supported by National Heart, Lung and Blood Institute 
(NHLBI) has shown that using corticosteroids to treat children with 
mild to moderate asthma is safe and effective. For several years there 
had been concern that corticosteriods would stunt the growth of 
children who used them. This five-year study showed that children had a 
one-year small reduction in their growth rate. But they had normal 
growth rates compared with children who did not use corticosteriods for 
the following four years. Children who used corticosteroids did suffer 
fewer asthma attacks and made fewer trips to the emergency room.
            Genetic Research
    Genetic Research is also providing insights into asthma. Physicians 
have noticed that while most people respond well to inhaled beta-
agonists--a commonly prescribed drug to treat asthma--some patients do 
not response or have worse asthma using inhaled beta-agonists. 
Researchers in the NHLBI supported Asthma Clinical Research Network 
have discovered that a genetic variation in the beta-adrenegric 
receptor determines how well asthma patients will respond to inhaled 
beta-agonists. This discovery will enable physicians to better target 
the drugs they proscribe to treat asthma.
    Researchers supported by NHLBI have developed better animal models 
to allow expression of selected asthmatic genetic traits. This will 
allow researchers to develop a greater understanding of how genes and 
environmental triggers influence asthma's onset, severity and long-term 
consequences.
            Asthma Programs
    Last year, Congress provided approximately $32.7 million for the 
Centers for Disease Control and Prevention (CDC) to conduct asthma 
programs. The American Lung Association recommends that CDC be provided 
$70 million in fiscal year 2006 to expand its asthma programs.

                              TUBERCULOSIS

    Mr. Chairman, tuberculosis has been with us since the dawn of time. 
It is an airborne infection caused by a bacterium, Mycobacterium 
tuberculosis (TB). TB primarily affects the lungs but can also affect 
other parts of the body, such as the brain, kidneys or spine.
    TB is spread through coughs, sneezes, speech and close proximity to 
someone with active tuberculosis. People with active tuberculosis are 
most likely to spread TB to others they spend a lot of time with, such 
as family members or coworkers. It cannot be spread by touch or sharing 
utensils used by an infected person.
    There are an estimated 10 million to 15 million Americans who carry 
latent TB infection. Each has the potential to develop active TB in the 
future. About 10 percent of these individuals will develop active TB 
disease at some point in their lives. In 2001, there were 15,991 cases 
of active TB reported in the United States.
    The Institute of Medicine (IOM) recently published a report, 
entitled Ending Neglect: The Elimination of Tuberculosis in the United 
States. The report documents the cycles of attention and progress 
toward TB elimination, the periods of insufficient funding and the re-
emergence of TB. The American Lung Association is pleased to note that, 
for the time being, TB rates in the United States are declining. From a 
high in 1992 of 26,673 new cases, we have seen 9 straight years of 
decline. However, the drop in 2001 was reportedly only 2 percent, 
indicating a leveling off of the overall decline in cases and a cause 
for concern within the public health community. This is no time to 
lower our defenses in funding TB programs.
    While declining overall TB rates is good news, the emergence and 
spread of multi-drug resistant TB poses a significant threat to the 
public health of our nation. Continued support is need if the United 
States is going to continue progress toward the elimination of TB.
    The IOM report provides the United States with a road map of 
recommendations on how to eliminate TB in the United States. The IOM 
report identifies needed detection, treatment, prevention and research 
activities. The American Lung Association has endorsed the IOM report 
and its recommendations. We estimate it will cost $528 million for the 
CDC Tuberculosis Elimination Program to implement the report 
recommendations.
    The NIH also has a prominent role to play in the elimination of TB. 
Currently there is no highly effective vaccine to prevent TB 
transmission. However, the recent sequencing of the TB genome and other 
research advances has put the goal of an effective TB vaccine within 
reach. In addition, the American Lung Association encourages the 
subcommittee to fully fund the tuberculosis vaccine blueprint 
development effort at the National Institutes of Allergy and Infectious 
Disease (NIAID).

Fogarty International Center TB Training Programs
    The Fogarty International Center (FIC) at NIH provides training 
grants to U.S. universities to teach AIDS treatment and research 
techniques to international physicians and researchers. The goal is to 
develop a cadre of health professionals in the developing world who can 
begin controlling the global AIDS epidemic.
    Because of the link between AIDS and TB infection, FIC has created 
supplemental TB training grants for these institutions to train 
international health care professionals in the area TB treatment and 
research. This supplemental program has been highly successful in 
beginning to create the human infrastructure to treat the nearly two 
billion people who have TB worldwide.
    However, we believe TB training grants should not be offered 
exclusively to institutions that have received AIDS training grants. 
The TB grants program should be expanded and open to competition from 
all institutions. The American Lung Association recommends Congress 
provide $71 million for FIC to expand the TB training grant program 
from a supplemental grant to an open competition grant.

          RESEARCHING AND PREVENTING OCCUPATIONAL LUNG DISEASE

    Protecting the health of our nation's workforce will require 
research, training, tracking and new technologies. The American Lung 
Association recommends that the subcommittee provide $326 million for 
the National Institute for Occupational Safety and Health (NIOSH) at 
the Centers for Disease Control and Prevention (CDC), including $25 
million for the NIOSH National Occupational Research Agenda (NORA). 
NORA represents a partnership research plan for occupational disease. 
The NORA agenda was developed with input from labor, business and the 
health community.

                               CONCLUSION

    In conclusion, Mr. Chairman, lung disease is a growing problem in 
the United States. It is America's number three killer, responsible for 
1 in 7 deaths. The lung disease death rate continues to climb. Overall, 
lung disease and breathing problems constitute the number one killer of 
babies under the age of one year. Worldwide, tuberculosis kills three 
million people each year, more people than any other single infectious 
agent does. Mr. Chairman, the level of support this committee approves 
for lung disease programs should reflect the urgency illustrated by 
these numbers.
                                 ______
                                 
      Prepared Statement of the American Psychological Association

    The American Psychological Association (APA) is the largest 
association of psychologists in the world, representing 155,000 
members, affiliates and students. APA exists to advance psychology as a 
science, a profession, and a means of promoting education and human 
welfare. APA members serve as scientists funded by the National 
Institutes of Health and Centers for Disease Control and Prevention, as 
teachers and professors in our nation's high schools, colleges and 
universities, and as health professionals who treat patients in public 
and private clinics and programs. APA encourages the committee to 
strengthen U.S. investment in a continuum of programs on health 
promotion, disease prevention and care, ranging from basic research to 
clinical applications that will improve the health and education of all 
Americans. We appreciate the opportunity to submit testimony for the 
record.

              U.S. DEPARTMENT OF HEALTH AND HUMAN SERVICES

National Institutes of Health
    The Administration's fiscal year 2006 budget proposes an NIH 
funding increase of 0.5 percent, lower than the biomedical inflation 
rate. This would not allow NIH to take advantage of many scientific 
opportunities. The success rate is already falling from one in three 
grant applications funded, to one in four. APA encourages the Committee 
to include a six percent funding increase for NIH in this year's 
legislation.
    Funding increases for the NIH Office of Behavioral and Social 
Sciences Research (OBSSR) have been negligible for the past two years, 
and the Administration's budget continues the trend (the request is 
$26.2 million). The Committee has praised OBSSR for making it easier 
for NIH institutes to cooperate to fund cross-cutting initiatives. 
OBSSR has been able to leverage substantive funding initiatives with a 
small budget. However, its ability to do so is eroding. OBSSR is 
planning trans-NIH programs to fund behavioral and social research on 
health disparities in minority populations, and on how gene/environment 
interactions affect health. It would benefit from a six percent 
increase. APA supports an appropriation of $27.66 million for OBSSR.
    Critically important behavioral research is being conducted by most 
NIH institutes. We can list only a few examples here. Epidemiology 
studies supported by NIAAA show that alcohol is a drug of choice for 
youth and that it is associated with a host of consequences in this age 
group, including death and increased risk of harm and other negative 
outcomes. Recent data show that 18- to 24-year-olds have the highest 
prevalence of alcohol dependence of any age group. These and other data 
make it clear that alcohol has become entrenched in the developmental 
processes of adolescence, and that the developmental changes of 
adolescence appear to make this age group particularly vulnerable to 
alcohol's effects. Research by NIDA and others shows that the human 
brain does not fully develop until about age 25. Having insight into 
how the human brain works, and understanding the biological 
underpinnings of risk taking among young people will help in developing 
more effective prevention programs. NIAAA and NIDA are to be commended 
for pursuing research to understand how to extricate alcohol and other 
addictive drugs from adolescent development and how to change 
adolescents' behaviors toward addictive substances.
    Psychological research supported by the NICHD is providing critical 
answers to many questions about childhood development, including how 
children learn to read and how they can overcome learning disabilities. 
Additional work is needed to improve our understanding of the role of 
cognition in learning mathematical and scientific concepts. Additional 
research is also needed to inform the public health community of how 
best to modify high-risk behaviors in children and families that 
contribute to the rising incidence of childhood obesity.
    As NIMH implements its reorganization, APA is encouraging the 
institute to maintain its support for a comprehensive research 
portfolio that includes funding for a broad array of basic behavioral 
research and continues to support research on the promotion of mental 
health and the study of psychological, social, and legal factors that 
influence behavior. Given the increasing burden of mental disorders on 
children and adolescents, behavioral interventions are especially 
needed for children and adolescents with eating disorders, attention 
deficit-hyperactivity disorder, post-traumatic stress disorder and the 
most common forms of depression. Translational research in the 
behavioral and social sciences is especially needed to address how 
basic behavioral processes, such as cognition, emotion, motivation, 
development and social interaction, inform the diagnosis, treatment and 
delivery of services for mental disorders.
    APA remains concerned that basic behavioral research at NIH--that 
is, research on the mechanisms that influence and underlie behavior, 
conducted outside a disease context--is vulnerable to budget pressures 
and pressures to demonstrate effective interventions. NIH institutes 
must balance the imperative for translation with the need to continue 
posing basic questions that will fuel the next generation of 
interventions. Much basic research is supported at NIH by the National 
Institute of General Medical Sciences, yet NIGMS funds very little 
basic behavioral research. APA asks that the committee continue to 
encourage or direct NIGMS, as it has for the past five years, to fill 
some of the gaps that now appear in NIH support of basic behavioral 
research and research training.

                ADMINISTRATION FOR CHILDREN AND FAMILIES

Prevention of child maltreatment
    Nationwide, an estimated 896,000 children are abused and neglected 
each year, resulting in an estimated 1,400 child deaths. The negative 
effects of child maltreatment can persist into adulthood. An increase 
of $15 million will enhance prevention activities for child 
maltreatment by population-based monitoring to capture information 
about children outside child protective service systems and improve 
data collection to inform policy, research and public awareness 
programs. These funds will also advance research to prevent the 
negative consequences of child maltreatment and to examine risk and 
protective factors to further the development and implementation of 
culturally and linguistically appropriate prevention and intervention 
approaches.

Bullying prevention
    Research indicates that bullying directly affects approximately one 
in three school children within a school semester. In addition, 
research confirms that bullying among children poses serious risks for 
victims and perpetrators and may seriously undermine the climate of 
schools. APA urges the adoption of research-based comprehensive 
bullying prevention programs and adequate federal funding to support 
the implementation of effective, comprehensive bullying prevention 
programs.

     HEALTH RESOURCES AND SERVICES ADMINISTRATION BUREAU OF HEALTH 
                              PROFESSIONS

Graduate Psychology Education (GPE) Program
    Funding in the amount of $6 million for fiscal year 2006 is 
requested to continue the Graduate Psychology Education (GPE) Program, 
which was established in fiscal year 2002. The GPE Program, 
administered by the Bureau of Health Professions, is the only federal 
program dedicated solely to psychology education and training.
    Funded in fiscal year 2003 at $4.5 million and flat-funded for 
fiscal year 2004 and fiscal year 2005, the funds are now obligated to 
27 grants on a three year cycle. As a result there will be no new 
competition this year. Without a modest increase of $1.5 million there 
will not be a new competition in fiscal year 2006. The $6 million 
request for fiscal year 2006 will enable hundreds of interested 
universities and training sites (e.g., veterans hospitals, children's 
hospitals, academic science centers and public health facilities) to 
apply for a GPE grant to increase the number of psychologists 
practicing in underserved rural and urban communities.
    The GPE Program provides grants to APA accredited doctoral, 
internship and post-doctoral programs in support of interdisciplinary 
training of psychology students for the provision of mental and 
behavioral health services to underserved populations (i.e., older 
adults, children, chronically ill persons, and victims of abuse and 
trauma), especially in rural and urban communities. Furthermore, the 
GPE Program addresses the need for mental health services that was well 
documented in the New Freedom Commission on Mental Health Report 
(2003): about 1 in 5 American adults (44 million people) experience a 
mental disorder in a given year and 28 percent of adults meet the full 
criteria for a mental or addictive disorder.

   SUBSTANCE ABUSE, MENTAL HEALTH SERVICES ADMINISTRATION CENTER FOR 
                         MENTAL HEALTH SERVICES

Mental and Behavioral Health Services on Campus Program
    Funding in the amount of $5 million for fiscal year 2006 is 
requested for the newly established Mental and Behavioral Health 
Services on Campus Program, which is part of the Garrett-Lee-Smith 
Memorial Act that provides support for youth suicide early intervention 
and prevention programs, technical assistance centers for suicide 
prevention, and mental and behavioral services on campuses. The program 
also helps identify the best means, strategies and solutions for 
addressing the mental and behavioral health needs of our college aged 
youth.
    The Mental and Behavioral Health Services on Campus program 
received $1.5 million from fiscal year 2005 funds. The requested 
increased funding for $5 million in fiscal year 2006 will help ensure 
that SAMSHA administrators will be able to implement the program in a 
way that best addresses the needs that exist on college campuses. 
Academic failure on our college campuses, which is often associated 
with mental or behavioral problems, not only results in personal loss, 
but loss in federal investment (student financial assistance), as well. 
In the most severe cases, unaddressed psychological problems can lead 
to depression and even suicide--a loss that can never be measured.

Minority AIDS Initiative
    The estimated number of AIDS cases from 1999 to 2003 has increased 
for racial and ethnic minorities, including African Americans, Latino/
as, Asian Pacific/Islanders and American Indians/Alaska Natives. Many 
persons with HIV/AIDS have mental and/or substance abuse disorders. 
While treatment can enhance overall health and well-being, racial and 
ethnic minorities have less access to, and lower utilization of, mental 
health and substance abuse services. Accordingly, APA recommends an 
additional $5 million, for a total of $15 million, for the Minority 
AIDS Initiative to provide culturally competent and accessible mental 
health and substance abuse services to persons of color living with 
HIV/AIDS.

                 CENTER FOR SUBSTANCE ABUSE PREVENTION

Rapid HIV Testing
    Each year, 25 to 30 percent of HIV-infected people who come to 
public clinics for HIV testing do not return a week later to receive 
their test results. With the rapid HIV test, results are available in 
about 20 minutes. Greater availability of this test can increase 
overall HIV testing and reduce the number of people--an estimated 
225,000 Americans--who are unaware of their HIV infection. APA strongly 
supports the Rapid HIV Testing Initiative to train mental health and 
substance abuse service providers on rapid HIV testing and prevention 
counseling and urges an additional $4.8 million, for a total of $9.6 
million, for fiscal year 2006. Mental health treatment services for 
individuals testing positive should also be provided as a critical 
component of rapid HIV testing.

 CENTERS FOR DISEASE CONTROL AND PREVENTION (CDC) NATIONAL CENTER FOR 
                     INJURY PREVENTION AND CONTROL

Suicide prevention
    An increase of $5 million over the fiscal year 2005 appropriation 
for suicide prevention activities will allow CDC to support the 
evaluation of suicide prevention planning, programs, and communication 
efforts to change knowledge and attitudes and to reduce suicidal 
behavior. These evaluation efforts will support communities to identify 
promising and effective suicide prevention strategies that follow the 
public health model and build community resilience.

National Violent Death Reporting System (NVDRS)
    An increase of $10 million over the fiscal year 2005 appropriation 
for the NVDRS will allow approximately 20 additional states to be 
funded to gather and share state-level data about violent deaths. This 
state-based system collects data from medical examiners, coroners, 
police, crime labs, and death certificates to understand the 
circumstances surrounding violent deaths. The information can be used 
to develop, inform, and evaluate violence prevention programs.

     NATIONAL INSTITUTE FOR OCCUPATIONAL SAFETY AND HEALTH (NIOSH)

    APA recommends an overall increase of $40 million over the fiscal 
year 2005 appropriation for NIOSH. As the only federal agency for 
occupational safety and health research and prevention, NIOSH provides 
national and international leadership to prevent work-related illness, 
injury, and death by gathering information, conducting scientific 
research, and translating the knowledge gained into products and 
services.

                      U.S. DEPARTMENT OF EDUCATION

Institute for Education Sciences
    Support for research is particularly critical at the Institute of 
Education Sciences as it seeks to translate scientifically based 
research findings into classroom practice. To support the highest 
quality cognitive, developmental, and educational science, we would 
encourage IES to hold a field-initiated studies competition in the next 
fiscal year to encourage innovative research driven by scientific 
opportunities.
    APA appreciates the opportunity to present appropriations 
recommendations for the written record, and encourages members of the 
Committee to contact our Public Policy Office at (202) 336-6062 with 
questions or concerns about this statement.
                                 ______
                                 
        Prepared Statement of the American Psychological Society

                       SUMMARY OF RECOMMENDATIONS

  --As a member of the Ad Hoc Group for Medical Research Funding, APS 
        recommends $30 billion for NIH in fiscal year 2006.
  --APS requests Committee support for increased behavioral and social 
        science research and training at NIH in order to: better meet 
        the Nation's health needs, many of which are behavioral in 
        nature; realize the exciting scientific opportunities in 
        behavioral and social science research, and; accommodate the 
        changing nature of science, in which new fields and new 
        frontiers of inquiry are rapidly emerging.
  --Committee support is requested for specific behavioral science 
        activities at a number of individual institutes. This statement 
        provides examples to illustrate the exciting and important 
        behavioral and social science work being supported at NIH.
    Mr. Chairman, Members of the Committee: The American Psychological 
Society is a nonprofit organization dedicated to the promotion, 
protection, and advancement of the interests of scientifically oriented 
psychology in research, application, teaching, and the improvement of 
human welfare. Our 16,000 members are scientists and educators at the 
Nation's universities and colleges.
    On behalf of our members, I would like to thank you for your 
leadership in the bipartisan effort to double NIH budget. As a result, 
NIH has experienced a period of unparalleled growth in the past 5 
years, and the progress achieved as a result of research funded by NIH 
will lead us into a new era of discovery and innovation. Unfortunately, 
that progress is threatened by the Administration's request for fiscal 
year 2006, which at only .7 percent (or $196 million) over fiscal year 
2005 will not even cover the costs of inflation, never mind sustain and 
advance the nation's investment in NIH. As a member of the Ad Hoc Group 
for Medical Research Funding, APS recommends $30 billion for NIH in 
fiscal year 2006, an increase of 6 percent over fiscal year 2005 
funding levels. This increase would help provide a stable base of 
funding for the Nation's public health research enterprise and allow 
NIH to continue its important scientific pursuits.
    Within the NIH budget, APS is particularly focused upon the 
behavioral and social science research activities of NIH.
the importance of behavioral research in addressing the nation's health
    In any realistic picture of our Nation's health, a core finding is 
that behavior is central to many, maybe to most of our Nation's leading 
health concerns: heart disease; stroke; lung disease and certain 
cancers; obesity; AIDS, suicide; teen pregnancy, drug abuse and 
addiction, depression and other mental illnesses; neurological 
disorders; alcoholism; violence; injuries and accidents--all have large 
behavioral components. Further, nearly 40 percent of premature deaths 
in the United States can be attributed to smoking, physical inactivity, 
poor diet, or alcohol misuse according to the Centers for Disease 
Control and Prevention.
    None of the conditions or diseases described above can be fully 
understood without an awareness of the behavioral and psychological 
factors involved in causing, treating and preventing them. For example, 
before you address how to change attitudes and behaviors around AIDS, 
you need to know how attitudes develop and change in the first place. 
Or, before you can change decisions about any risky behavior, you need 
to know how judgments and decisions are made on a range of topics. 
Similarly, before you address memory decline in the elderly, you need 
to know the basics of learning and memory and how that changes with 
age. And before you address the complexity of the interactions among 
genetics, the brain, and schizophrenia, you need to know the basics of 
cognition, emotion, culture, behavioral aspects of neuroscience, and 
behavioral genetics.
    APS members include thousands of scientists who, with NIH support, 
conduct basic, applied, and clinical research related to physical and 
mental health at our Nation's leading universities and colleges. 
Virtually every institute at NIH supports some amount of psychological 
science. Examples include: The connections between the brain and 
behavior; research into how children grow and develop; management of 
debilitating chronic conditions such as diabetes and arthritis as well 
as mental disorders; and the behavioral aspects of smoking and drug and 
alcohol abuse, so that science may find ways for people to escape 
addiction.
    NIH Director Dr. Elias Zerhouni, has expressed strong support for 
behavioral science at NIH, and sees this research as critical to our 
Nation's health. ``We are aware of the challenge in social and 
behavioral science. It's going to be front and center,'' he has stated. 
He went on to add, ``The bill for the nation will be unbearable in 
health and social costs without recognition of the role of behavior.'' 
However, to date, behavioral research has not received the recognition 
or support needed to reverse the effects of behavior-based health 
problems in this Nation.
    APS asks that you continue to help make behavioral research more of 
a priority at NIH, both by providing maximum funding for those 
institutes where behavioral science is a core activity, by encouraging 
NIH to advance a model of health that includes behavior in deciding its 
scientific priorities, and by encouraging the establishment of a stable 
infrastructure to support basic behavioral science research at NIH.

    BASIC BEHAVIORAL SCIENCE RESEARCH NEEDS A STABLE INFRASTRUCTURE

    Twenty-four of the 27 institutes at NIH fund behavioral science 
research, and seven institutes commit over $100 million to this 
enterprise. Six institutes commit over 20 percent of their resources to 
behavioral science research. However, most of these institutes do not 
fund research into the fundamental behavioral processes that underlie 
the diseases and conditions that constitute some of the most vexing 
health problems facing us today. Traditionally, such basic behavioral 
research has been supported by the National Institute of Mental Health 
(NIMH). NIMH, for any number of historical reasons, has been the home 
for far more basic behavioral science than any other institute. Many 
basic behavioral and social questions were being supported by NIMH, 
even if their answers also could be applied to other institutes. 
Recently, NIMH has begun to aggressively reduce its support for many 
areas of the most basic behavioral research, saying that, like many 
other Institutes, it too is disease specific and must focus its energy 
on battling mental illness through translational and clinical research. 
This means that previously funded areas now are not being supported.
    NIMH is to be commended for promoting the transfer of knowledge 
into application for mental illness. But this is happening at the 
expense of critical basic behavioral research. Without progress in our 
understanding of fundamental behavioral processes, there will not be a 
sufficient body of knowledge to translate into application. Until other 
institutes begin to support larger amounts of basic behavioral science 
research connected to their respective missions, it is essential that 
NIMH's programs of research in behavioral phenomena such as cognition, 
emotion, psychopathology, perception, development, and others continue 
to flourish. APS asks the Committee to encourage NIMH's continued 
efforts to strengthen the ties between basic and clinical behavioral 
research, and to encourage NIMH's basic behavioral science portfolio in 
order to ensure continued progress in our understanding of the causes, 
treatment and prevention of mental illness and the promotion of mental 
health.
  nigms should support basic behavioral science research and training
    Answering basic social and behavioral science questions is central 
to the overall NIH mission. The recent change at NIMH regarding basic 
behavioral research illustrates the problem of depending too much on 
non-structural support at any one agency for fundamental behavioral and 
social science research. Basic behavioral and social science needs a 
dependable structure of its own.
    The most appropriate location is the National Institute of General 
Medical Sciences (NIGMS), also known as NIH's ``basic research 
institute''. NIGMS already has a mandate to support basic behavioral 
research and training, but that mandate has not been fulfilled in part 
because NIMH already was serving that function.
    Since fiscal year 1999, this Committee has repeatedly issued report 
language urging NIGMS to fund basic behavioral research and training, 
saying, for example: ``The Committee is concerned that NIGMS does not 
support behavioral science research training. As the only Institute 
mandated to support research not targeted to specific diseases or 
disorders, there is a range of basic behavioral research and training 
that NIGMS could be supporting. The Committee urges NIGMS, in 
consultation with the Office of Behavioral and Social Sciences, to 
develop a plan for pursuing the most promising research topics in this 
area.'' [Senate fiscal year 2000 Appropriations Report 106-166, Senate 
fiscal year 2001 Appropriations Report 107-293, Senate fiscal year 2002 
Appropriations Report 107-84, Senate fiscal year 2003 Appropriations 
Report 107-216, Senate fiscal year 2004 Appropriations Report 108-82]
    Two years ago, Senators Specter, Inouye, and Harkin, engaged in a 
colloquy on the Senate floor expressing the Committee's strong support 
for basic behavioral research and training, and expressing their 
concern that NIH had not responded to this matter after many years of 
report language. Since then, NIH commissioned a task force to study the 
matter and report back to the Director's Advisory Committee. The panel 
formally recommended the establishment of a secure and stable home for 
basic behavioral science research and training at an NIH institute, 
and, in particular, suggested that an institute such as NIGMS should be 
that home, as this Committee has recommended for years.
    NIGMS is on record saying except for a few fields of inquiry, 
behavioral studies largely fall outside of its research mission, and 
are instead deemed to be within the missions of other institutes at the 
National Institutes of Health. And APS believes this line of thinking 
may still hold true within NIGMS. However, NIGMS' statutory mandate 
encompasses ``general or basic medical sciences and related natural or 
behavioral sciences [emphasis added] which have significance for two or 
more other national research institutes'' (TITLE 42, CHAPTER 6A, 
SUBCHAPTER III, Part C, subpart 11, Sec. 285k).
    Basic behavioral research in the cognitive, psychological and 
social processes underlying substance abuse and addiction (significance 
for NIDA, NIAAA, NCI and NHLBI), obesity (significance for NIDDK, 
NHLBI, and NICHD) and the connections between the brain and behavior 
(significance for NIMH, NINDS, and NHGRI) just to name a few, all are 
within the NIGMS mission. Given the statutory mandate, the 
recommendations of a recent Director's advisory council's task force, 
the strong Congressional interest, the scientific imperative, and most 
important, the health needs of the Nation, APS asks the Committee to 
direct NIGMS to develop a plan for establishing a basic behavioral 
science research and training program at NIGMS.
nih needs a comprehensive behavioral science research training strategy
    The outcomes of science are unpredictable. Yet there is one aspect 
of science where the time and money invested is guaranteed to pay off: 
the training of our future scientists. We know that if we provide 
support now for a young investigator, we will have a well-trained, 
highly-qualified scientist as a result. This is a serious issue in 
behavioral science at NIH, where the demand for behavioral science 
investigators at NCI, NIMH, and other institutes outpaces the current 
supply of behavioral science researchers. In order to meet the future 
needs of research in health and behavior, NIH must have a comprehensive 
training strategy in place today, one that focuses on training young 
investigators in the core disciplines of behavioral and social science 
research as well as in multidisciplinary perspectives.
    APS is hopeful that NIH will take a closer look at forthcoming 
recommendations from a congressionally mandated National Academy of 
Sciences (NAS) study of research personnel needs with regard to the 
National Research Service Awards (NRSAs). It is anticipated that this 
study will be transmitted to Congress and NIH in the near future. When 
NAS conducted this study in 2000, NIH selectively implemented NAS's 
recommendations and ignored important findings with regard to the need 
for increased training, if at all. This Committee has taken note of the 
behavioral science recommendations from this study in the past, and has 
supported increasing NRSA awards as a mechanism to increase behavioral 
science research training. APS asks the Committee to developments 
closely.
    More generally, APS asks the Committee to support the development 
of a comprehensive training strategy for behavioral and social science 
research at NIH. This strategy should include all training mechanisms, 
and should be balanced between interdisciplinary research and 
traditional core disciplines in the behavioral sciences.

                  BEHAVIORAL SCIENCE AT KEY INSTITUTES

    In the remainder of my testimony, I would like to highlight 
examples of the cutting edge behavioral science research being 
supported by individual institutes.
National Institute of Mental Health (NIMH)
    NIMH is funding behavioral research ranging from neural information 
processing to social psychology decision-making. Ultimately, this 
investment will help researchers understand and improve the way people 
think, plan, and make choices about their future as it relates to 
everything from chronic mental illness to AIDS. For example, one NIMH 
study is aimed at identifying how people understand the near future 
versus the distant future with the hopes of relating study findings to 
HIV prevention. By investigating how temporal distance from future 
events influences judgments and decisions regarding those events, 
researchers hope to identify the advantages and disadvantages of 
decision-making at different points in time.
    An NIMH-funded project is examining the operation of attention at 
two coarsely defined stages of processing: visual perception and visual 
working memory. By comparing ``memory-intensive'' tasks in which 
working memory is overloaded but the perceptual demands are minimal 
with ``perception-intensive'' tasks in which memory is not overloaded 
but the perceptual demands are great, researchers expect to see 
attention operate at different stages in these tasks. By developing 
methods to isolate and assess perceptual-level and working memory-level 
property mechanisms, researchers will be able to more easily identify 
attentional mechanisms compromised in a given disorder. This program of 
research will have important long-term implications for psychological/
psychiatric disorders in which attention is compromised, such as 
attention deficit disorder, many anxiety disorders, even schizophrenia.
    Similarly, the NIMH project titled ``Executive Processes-Behavioral 
and Neuroimaging Study'' will help scientists better understand the 
brain mechanisms responsible for so-called ``executive'' brain 
functions, such as the ability to stay focused, to multi-task, and to 
respond with action. Studying these executive processes, which play a 
central role in cognition, could influence how we look at behavioral 
and psychological functioning, from the changes that occur over the 
life span to early diagnosis and treatment of dementia and other 
conditions involving reduced cognitive capacities.

National Institute on Drug Abuse (NIDA)
    By supporting a comprehensive research portfolio that stretches 
across basic neuroscience, behavior, and genetics, the National 
Institute on Drug Abuse (NIDA) is leading the Nation to a better 
understanding and treatment of drug abuse. APS applauds NIDA for 
strengthening its efforts to study adolescent brain development to 
examine the influence drug exposure has on behavioral, psychological, 
and physiological development. New research supported by NIDA reveals 
that drug addiction is a ``developmental disease'' that often starts 
during the early developmental stages in adolescence, an age at which 3 
million 12-17 year olds reported using illicit drugs last year. If we 
can better understand the effects structural brain changes have on 
functions like thinking, decision-making, sensation and perception we 
will be able to better develop targeted and more likely effective 
prevention strategies from the brain development perspective. APS asks 
this Committee to support this and other critical behavioral science 
research at NIDA, and to increase NIDA's budget in proportion to the 
overall increase at NIH in order to reduce the health, social and 
economic burden resulting from drug abuse and addiction in this Nation.

National Institute on Alcohol Abuse and Alcoholism (NIAAA)
    The National Institute on Alcohol Abuse and Alcoholism (NIAAA) 
works to examine the biological, chemical and behavioral factors 
associated with alcohol abuse and consumption, the third highest cause 
of preventable death in the United States according to the Centers for 
Disease Control and Prevention. Over time, NIAAA has broadened its 
behavioral science portfolio to understand the underlying psychological 
and cognitive processes that lead people to drink, and the impact of 
chronic alcohol abuse on those processes. Today, the institute is 
stepping up its efforts via its Improving Effectiveness of Treatment 
initiative to move beyond what we understand about today's behavior 
therapies and to further understand the mechanisms that determine how 
and why alcohol-related behavior changes. And since these changes are 
influenced by neurobiological, psychological and social factors, this 
new and exciting research includes multiple levels of research to 
ensure an integrated understanding to improve behavior strategies. APS 
asks this Committee to support NIAAA's behavioral science research 
efforts, and to increase NIAAA's budget in proportion to the overall 
increase at NIH in order to reduce the health, social and economic 
burden resulting from alcohol abuse and alcohol dependence.

National Cancer Institute (NCI)
    The National Cancer Institute (NCI) is an agency that continues to 
make enormous advances in the behavioral sciences to achieve effective 
cancer prevention and control. Since its Behavioral Research Program 
was launched in 1997, NCI has funded comprehensive behavioral science 
research programs ranging from basic behavioral science to research on 
the development, testing and dissemination of disease prevention and 
health promotion interventions in areas such as tobacco use, diet, and 
even sun protection. APS applauds NCI's foresight to conduct 
transdisciplinary research within the program's five branches of 
Tobacco Control, Cancer Communications, Health Disparities, Energy 
Balance, and Cancer Survivorship because it set forward a new path for 
science--and APS believes disciplines are only made stronger when 
complimented by others. Take for example the agency's Centers for 
Transdisciplinary Research on Energetics and Cancer within the Energy 
Balance branch. This initiative brings together NCI's investment in 
diet, weight and physical activity research priorities by bringing 
together scientists from multiple disciplines to carry out projects 
ranging from the biology and genetics of energy balance to behavioral, 
sociocultural and environmental influences on nutrition, physical 
activity, weight, energy balance and energy transferred to or expended 
in life processes. In addition to training established scientists, this 
investment fosters collaboration among transdisciplinary teams. APS 
asks Congress to support NCI's behavioral science research and training 
initiatives and to encourage other institutes to use these programs as 
models.

National Institute on Aging (NIA)
    APS is particularly pleased with NIA's dedication to behavioral 
research through the Behavioral and Social Research (BSR) Program--and 
its 3 branches of individual behavior, population and social processes 
and research resources and development--that supports basic social and 
behavioral research and research training by studying the dynamic 
interplay between individuals' aging; their changing biomedical, 
social, and physical environments; and multilevel interactions among 
psychological, physiological, social, and cultural levels. Agency-
conducted research like that of the Behavioral and Imaging Approaches 
to Implicit Memory in Aging study will ultimately make a major 
contribution to our understanding of age-related changes in memory. As 
researchers carefully integrate behavioral and neuroimaging studies to 
broaden and deepen current understanding of age-related changes in 
implicit memory, they are evaluating decision accuracy in both young 
and elderly subjects to assess the neural substrates supporting 
encoding and retrieval of implicit memory. APS asks the Committee to 
support NIA's behavioral science research efforts and to increase NIA's 
budget in proportion to the overall increase at NIH in order to 
continue its high quality research to improve the health and wellbeing 
of older Americans.

Office of Behavioral and Social Sciences Research (OBSSR)
    I'm pleased to report that psychological scientist David Abrams, 
from Brown University, has been appointed as the Director of the Office 
of Behavioral and Social Sciences Research at NIH. We ask the Committee 
to join us in welcoming Dr. Abrams to this position, and to support 
OBSSR in its efforts to achieve a strengthened behavioral science 
research enterprise at NIH.
    It's not possible to highlight all of the worthy behavioral science 
research programs at NIH. In addition to those reviewed in this 
statement, many other institutes play a key role in NIH behavioral 
science research enterprise. These include the National Heart, Lung, 
and Blood Institute, the National Institute of Neurological Disorders 
and Stroke, the National Institute of Diabetes and Digestive and Kidney 
Diseases, the National Institute of Nursing Research, and the National 
Institute for Human Genome Research. Behavioral science is a central 
part of the mission of these institutes, and their behavioral science 
programs deserve the Committee's strongest possible support.
                                 ______
                                 
        Prepared Statement of the American Society of Hematology

    Chairman Specter and members of the Subcommittee, the American 
Society of Hematology (ASH) thanks you for the opportunity to submit 
written testimony on the fiscal year 2006 Departments of Labor, Health 
and Human Services, and Education Appropriations Bill. In addition, ASH 
sincerely thanks the Subcommittee for its support of biomedical 
research.
    The Society represents nearly 14,000 clinicians and scientists 
committed to the study and treatment of blood and blood-related 
diseases. These diseases encompass malignant disorders such as 
leukemia, lymphoma, and myeloma; non-malignant conditions including 
anemia, thrombosis, and bleeding disorders; and congenital disorders 
such as sickle cell anemia, thalassemia, and hemophilia. In addition, 
hematologists have been pioneers in the fields of bone marrow 
transplantation, gene therapy, and the development of many drugs for 
the prevention and treatment of heart attacks and strokes.
    Hematologists treat a diverse group of patients. For example, 
anemia is a condition that has enormous consequences in the quality-of-
life and functioning of the elderly; sickle cell disease is an 
inherited blood disorder that primarily affects African Americans. The 
hematological cancers--leukemia, lymphoma, and myeloma--strike men and 
woman of all ages; in 2005, nearly 115,000 Americans will be diagnosed 
with and more than 53,000 will die from these cancers.
    The study of blood and its disorders involves a number of NIH 
Institutes, including the National Heart, Lung and Blood Institute 
(NHLBI), the National Cancer Institute (NCI), the National Institute of 
Diabetes, Digestive and Kidney Diseases (NIDDK), and the National 
Institute on Aging (NIA). The Society supports the leadership of these 
Institutes and commends them for their vision and responsible research 
portfolio management.
    The Society's requests this year focus on translating basic 
scientific findings into improved treatments for patients with serious 
blood diseases. New comprehensive approaches to clinical research 
funding will advance our understanding of how to treat these and other 
diseases, enable patients to participate in high quality clinical 
protocols, and attract and train much-needed clinicians and clinical 
researchers to the field of hematology.

                   FISCAL YEAR 2006 FUNDING REQUESTS

NIH Funding
    ASH fully supports the Ad Hoc Group for Medical Research Funding 
recommendation of $30 billion for NIH in fiscal year 2006. This 6 
percent increase represents an important step in maintaining NIH's 
commitment to medical research funding so that the progress made during 
the doubling years is not eroded. Research programs are not spigots 
that you can turn on and off without compromising their effectiveness. 
Innovative scientific teams working in sophisticated labs cannot be 
sustained without some stability in medical research funding from year 
to year. It is critical that the US maintain its commitment to medical 
research.
    For fiscal year 2006, the Bush Administration proposed $28.845 
billion, a $196 million or 0.7 percent increase over last year. This is 
the third consecutive year that the President's Budget request for NIH 
has not kept pace with medical inflation. Only continued, sustained 
investment in life-saving medical science today will provide cures and 
therapies for tomorrow. A proposed NIH budget along the lines of 
President Bush's recommendation is effectively a cut in funding; it 
doesn't keep up with the cost of medical inflation.
    Moreover, NIH budgets in the range proposed by the Bush 
Administration will force NIH to drop paylines substantially below the 
33rd percentile--where they are generally considered unhealthy for the 
biomedical research enterprise. Estimated paylines for most NIH 
Institutes in fiscal year 2006 are less than the 18th percentile. Low 
paylines create an atmosphere of hopelessness for even established 
investigators and little incentive for young researchers to take the 
chance that their grant would receive funding. More funding at NIH 
would provide the Institutes the opportunity to raise their paylines 
and fund more qualified and innovative research.
    In addition, there needs to be a highly-trained scientific 
workforce for NIH to meet its research objectives. Training the next 
generation of biomedical researchers has traditionally been the 
responsibility of NIH. Under the President's fiscal year 2006 Budget 
proposal, NIH will support almost 400 fewer full time training 
positions than last year. Without funding for the next generation of 
physician scientists, the biomedical research enterprise will not be 
prepared for future efforts.
    The Society is proud that NIH-sponsored research in hematology has 
led to important discoveries and generated new treatments and 
pharmaceutical products with broad applicability to human diseases. We 
have all benefited from past investments in NIH research. Recent 
advances include the incredibly effective hematologic drug Gleevec--a 
breakthrough in treating chronic myelogenous leukemia--that is one of 
the first drugs of its kind to be approved that targets specific 
molecules in cancer cells, leaving healthy cells unharmed. Moreover, 
ASH has always emphasized the synergy that is vital to successful 
scientific work. Basic research on the blood has aided physicians who 
treat patients with heart disease, strokes, end-stage renal disease, 
cancer and AIDS. As a result of this cross-fertilization, the Society 
remains firmly committed to broad-based support for biomedical research 
and to the existing peer-review process as the best way to identify and 
prioritize scientific grants.
    In fiscal year 2006, ASH also urges the Subcommittee to recognize 
the following areas of hematology research that have shown impressive 
progress and offer the potential of future advances:
            Coordination of the Issues Common to the Hemoglobinopathies
    Sickle cell anemia and thalassemia are inherited blood disorders 
caused by mutations in the genes for the hemoglobin molecule--the 
protein in red blood cells that carries oxygen to all parts of the 
body--and affect the normal functioning of hemoglobin in our blood. 
These conditions cause many problems including moderate to severe 
anemia, chronic pain, iron overload with its associated diabetes, liver 
and heart failure, enlarged spleen, bone weakness, pulmonary 
hypertension, and stroke. Although these disorders share many common 
issues, their research programs at NHLBI are organized into two 
parallel structures that could possibly benefit from the expertise of 
researchers focused on the other disorder. ASH believes there is an 
opportunity to determine the science and management issues common to 
the hemoglobinopathies and identify areas of scientific collaboration 
and promising new research directions in sickle cell anemia and 
thalassemia.
            Expansion of Research Activities in the Underlying Causes 
                    of Thrombosis at NHLBI and NIA
    Venous and arterial thrombosis (blood clots) are serious conditions 
that can lead to heart attacks, strokes, limb loss, and respiratory 
dysfunction. Vascular biology research provides the foundation for 
understanding the underlying causes of atherosclerosis, angiogenesis, 
inflammation, and thrombosis. Greater understanding of vascular biology 
will lead to more knowledge about the prevention of thrombosis, which 
has implications into the further research of heart disease, stroke, 
recurrent fetal loss, complications associated with sickle cell anemia 
and diabetes, as well as the interruption of the blood supply to tumors 
and cancers.
    Recent research disclosed that deep vein thrombosis affects up to 2 
million Americans annually. Overall, thrombosis has sharply increased 
rates in the elderly and causes significant mortality and morbidity. 
With an expanding elderly population, thrombosis could become an even 
more serious health care problem. Although age is a known and important 
risk factor for thrombosis, there are other major research questions 
that need to be investigated in order to improve its diagnosis and 
treatment, such as the underlying causes of thrombosis. ASH believes 
that new research initiatives in the underlying causes of thrombosis 
will be helpful for improving the diagnosis and treatment of this 
potentially fatal complication of many diseases.
            Strengthening of Support for Clinical and Translational 
                    Blood Cancer Research
    In 2005, nearly 115,000 Americans will be diagnosed with a 
hematologic malignancy, such as leukemia, lymphoma, and multiple 
myeloma. Moreover, more than 53,000 Americans will die from these 
cancers, compared to 40,870 for breast cancer, 30,350 for prostate 
cancer, and 56,290 for colon and rectum cancer. The blood cancers 
strike individuals of all ages, races, and each gender, and serve as 
valuable prototypes for the development of therapies for all types of 
malignant disorders. The Society hopes to work with NCI to strengthen 
its support for translational and clinical blood cancer research and 
use all available mechanisms to support blood cancer research by 
improving treatments and rapidly moving research advances from the 
laboratory bench to the patient's bedside.
            Expansion of Research Opportunities in Erythroid 
                    Differentiation, Oxidant Injury, and Metabolomics
    High quality hematology research in iron metabolism, gene 
regulation, and stem cell plasticity is currently being funded by 
NIDDK. ASH hopes to work with the Institute to continue advancing 
research in these areas and set new priorities in cutting edge 
hematology topics, such as erythroid differentiation, oxidant injury, 
and metabolomics.
Funding for the Sickle Cell Treatment Act (Public Law 108-357)
    Sickle Cell Disease (SCD) is an inherited blood disorder that is a 
major health problem in the United States. More than 2.5 million 
Americans, mostly African-Americans, have the sickle cell trait. SCD 
occurs in approximately 1 in 300 African-American newborns each year. 
The average life span for a patient with this devastating disease is 45 
years. While we continue to make progress with treatments, patients 
suffer debilitating pain and dangerous problems such as blood clots and 
strokes.
    As part of fiscal year 2005 Appropriations legislation, Congress 
provided $200,000 for the Health Resources and Services Administration 
to set up a demonstration program for sickle cell disease health 
centers and establish the National Coordinating Center to collect 
sickle cell disease-related data as authorized in the Sickle Cell 
Treatment Act (Public Law 108-357).
    For fiscal year 2006, ASH requests $10 million to continue to build 
this program by creating 40 Health Centers across the United States 
that would provide education, treatment (i.e., genetic counseling and 
testing), and continuity of care for individuals with sickle cell 
disease. In addition, this support would train health professionals at 
the 40 centers as well as establish a National Coordinating Center to 
collect, monitor and distribute information on best practices for the 
prevention and treatment of sickle cell disease. This recommendation 
has bipartisan, bicameral support as well as the backing of the 
Congressional Black Caucus and many other health, children's, church, 
union and African-American groups.
    ASH believes that the centers created through the Sickle Cell 
Treatment Act will improve the lives of SCD patients through disease 
management programs to help them live longer, healthier lives while 
funding research to find a comprehensive cure and providing community 
education about this disease and its treatment options.

        CONGRESSIONAL OVERSIGHT OF THE NIH PUBLIC ACCESS POLICY

    The Society remains concerned about the impact of the NIH Public 
Access Policy on the agency's budget, researchers, and not-for-profit 
journals. ASH requests that the Subcommittee continue to be engaged in 
the oversight of the policy's implementation. Moreover, the Society 
urges the Subcommittee to call for an analysis of the financial impact 
of the policy on the NIH budget and individual research grants.

                               CONCLUSION

    This is an exciting time to be engaged in biomedical research and 
the Society is proud that ASH members are participating in so many 
innovative studies. ASH praises the NIH leadership for the excellent 
stewardship of the hematology research portfolio at NCI, NHLBI, NIDDK, 
and NIA. The opportunities in hematology research are immense, 
particularly in translational research. Partnerships and cooperative 
ventures involving multiple academic centers are necessary for clinical 
research projects to succeed and need special attention from NIH. When 
properly conceived and implemented, ASH believes these studies will 
lead to improved therapies for patients with debilitating and deadly 
blood disorders. The Society sincerely hopes that the Subcommittee will 
continue its longstanding support of biomedical research and will find 
the means to fund NIH at $30 billion in fiscal year 2006.
    In addition, ASH requests that the Subcommittee provide $10 million 
for the Sickle Cell Treatment Act (Public Law 108-357) in fiscal year 
2006. This support will create a network of centers across the United 
States for the education, treatment, and continuity of care for 
individuals with sickle cell disease, a major health care problem.
    Thank you again for the opportunity to submit testimony. Please 
contact Jeff Coughlin, ASH Government Affairs Manager, at (202) 776-
0544 or [email protected] if you have any questions or need 
further information on hematology research, fiscal year 2006 NIH 
funding, and support for the Sickle Cell Treatment Act.
                                 ______
                                 
      Prepared Statement of the American Society for Microbiology

    The American Society for Microbiology (ASM), representing 43,000 
members in the microbiological sciences, is pleased to provide a 
statement on the fiscal year 2006 funding for the Centers for Disease 
Control and Prevention (CDC). Although the fiscal year 2006 budget 
request includes important funding for influenza vaccine, childhood 
immunizations, global disease detection, and the Strategic National 
Stockpile, the ASM is concerned about the proposed budget reduction of 
$491 million for CDC at a time when new health challenges, including a 
possible influenza pandemic, threaten public health. The 2003 Institute 
of Medicine (IOM) report, Microbial Threats to Health, warns that the 
magnitude and urgency of microbial threats demand renewed concern and 
commitment. The IOM report emphasizes the importance of strong CDC 
programs including greater global capacity for responding to infectious 
disease outbreaks, better case reporting by health care providers and 
laboratories, and expanded efforts related to antimicrobial resistance.
    With people at risk from a broad range of health threats, our 
public health system will not be able to respond adequately without 
appropriate resources for public health programs. The ASM, therefore, 
recommends an increase of 8 percent in the fiscal year 2006 budget for 
the CDC. CDC's importance to safeguarding public health, both 
nationally and globally, is now unprecedented, but the level of funding 
for CDC is not keeping pace with its growing responsibilities to 
address new health threats. Infectious disease public health needs have 
been and will continue to increase and CDC's funding must remain strong 
to address them.

                    CDC INFECTIOUS DISEASE PROGRAMS

    The CDC recently reorganized programs to better adapt to changing 
health threats. The Infectious Diseases Coordinating Center oversees 
three major programs, the National Immunization Program, the National 
Center for Infectious Diseases, and the National Center for HIV/AIDS, 
Sexually Transmitted Diseases and Tuberculosis Prevention. The 
President's budget includes $1.7 billion related to domestic prevention 
and control of infectious diseases through these programs.

                               INFLUENZA

    The National Center for Infectious Diseases is responsible for 
measuring progress in global influenza surveillance and detection to 
prepare for a pandemic influenza outbreak. Funding for pandemic 
influenza preparedness is appropriated through the Department of Health 
and Human Service's (DHHS) Public Health and Social Services Emergency 
Fund (PHSSEF). The budget proposes $120 million for the expansion of 
year-round vaccine production capacity, a priority in the DHHS's draft 
Pandemic Influenza Response and Preparedness Plan. A significant 
investment will be required to enhance vaccine capacity to address the 
threat of pandemic influenza by developing a newer generation of 
influenza vaccine that can be quickly produced and deployed to 
strengthen the public heath infrastructure on state and local levels, 
and to ensure that needed vaccines, antivirals and antibiotics are 
readily available.

                                HIV/AIDS

    Under the CDC reorganization, programs focused on HIV/AIDS, 
sexually transmitted diseases (STDs), and tuberculosis are managed 
through the National Center for HIV, STD, and TB Prevention (NCHSTP). 
The budget proposes $956 million, $658 million of which is focused on 
prevention of these infectious diseases. Despite CDC efforts over the 
past two decades, the number of new HIV infection cases each year 
continues to remain high and the number of Americans living with HIV/
AIDS is increasing. In fiscal year 2003, CDC launched a different U.S. 
initiative, based on new rapid testing techniques for immediate patient 
results, designed to better prevent infections through earlier 
notification and to help identify the estimated 180,000 to 280,000 
people not aware of their HIV-positive status.

                             GLOBAL HEALTH

    The agency's recent reorganization also coordinated programs under 
the Office of Global Health (OGH) to track and prevent the 
international spread of diseases like measles, polio, and HIV/AIDS. The 
overarching goals are to recognize outbreaks faster, wherever in the 
world they occur, and to better control and prevent further outbreaks. 
Global disease detection mandates steady expansion of surveillance 
systems worldwide, as trade and travel allow rapid spread of previously 
unknown or unanticipated pathogens. Clinical and public health 
laboratory capacity must be strengthened together with epidemiologic 
and communications capabilities. The World Health Organization goal of 
eradicating polio by 2005 has suffered some setbacks recently, with 
wild poliovirus spreading in some African countries during 2003 and 
2004. But last year, cases of the disease declined by nearly 50 percent 
in India, Pakistan, and Afghanistan. Since the WHO global initiative 
began in 1988, CDC and others have invested more than $3 billion in the 
polio campaign. An estimated 250,000 lives have been saved and 5 
million cases of childhood paralysis prevented. The CDC also partners 
with other federal agencies in the Global AIDS Program and in the 
President's Emergency Plan for AIDS Relief. In fiscal year 2004, nearly 
2 million HIV laboratory tests and 275,000 tuberculosis infection 
laboratory tests were conducted under auspices of the Global AIDS 
Program. In addition, antiretroviral drug therapy was provided for 
nearly 19,000 AIDS patients in nine countries. By the end of 2003, the 
active spread of measles had been stopped in the Western Hemisphere. 
That year the CDC and its partners vaccinated more than 115 million 
children worldwide. Unfortunately measles persists as one of the 
world's leading child killers with an estimated 30 million cases and 
700,000 deaths each year.

                        ANTIMICROBIAL RESISTANCE

    Overuse of antimicrobials seriously increases the prevalence of 
pathogens resistant to commonly prescribed drugs. Antimicrobial 
resistance is considered one of the pressing issues faced by the CDC 
and other public health institutions. The 2003 Annual Report of the 
Antimicrobial Resistance Interagency Task Force reported that the 
number of cases of invasive pneumococcal disease in children in seven 
geographic areas declined by 75 percent in 2002 due to widespread use 
of pneumococcal vaccine, thereby reducing the use of antimicrobials 
which may become resistant. In fiscal year 2004, the CDC inaugurated a 
national media campaign about antibiotic resistance, to educate both 
patients and health care providers about the serious ramifications of 
overprescribing antibiotics. Also in fiscal year 2004, extramural 
grants were awarded for applied research in the estimate of economic 
costs for antimicrobial resistant human pathogens of public health 
importance. The purpose of the grant program is to obtain information 
that might impact and improve the current methods of preventing the 
emergence and spread of antimicrobial resistance. ASM supports 
sufficient budgetary increases in such prevention programs. The return 
on investment creates enormous health and economic benefits to the 
American public.

                             IMMUNIZATIONS

    The CDC's immunization program would receive $2.1 billion under the 
proposed fiscal year 2006 budget, to support the two primary goals of 
the program: at least 90 percent of all 2-year-olds to receive the 
recommended vaccines, and assurances of an adequate annual influenza 
vaccine supply. Investments in immunization programs are proven cost-
savers. For example, every dollar spent on measles-mumps-rubella 
vaccine saves an estimated $23 in health-care costs. Fiscal year 2006 
funds would flow through the Vaccines for Children program and the 
Section 317 program, the former to provide vaccinations to children 
otherwise underserved in the health care system, the latter to 
subsidize state immunization efforts. As part of the overall CDC 
immunization focus, $197 million is requested for influenza-related 
activities, representing a nine-fold increase over fiscal year 2001 
appropriations. Funds would further expand the pediatric vaccine 
stockpile initiated last year, purchase additional doses of influenza 
vaccines for the general public, and encourage greater vaccine 
production for next winter's flu season. The fiscal year 2006 emphasis 
on immunization activities is a prudent use of federal funds needed to 
protect the public.

                              SURVEILLANCE

    DNA technology provides some of the notable cutting-edge science 
upon which CDC testing and surveillance programs are built and 
operated. The PulseNet system, which tracks foodborne illness 
outbreaks, is one particularly extensive use of such technology. These 
illnesses affect more than 76 million Americans each year; periodic 
outbreaks often are widely publicized in the national media. One 
example is the 2004 outbreak of salmonellosis among more than 500 
people across five states, which CDC epidemiologists tied to 
contaminated restaurant tomatoes. Another is a multi-state incident of 
hepatitis A infecting more than 1,000 people after they ingested 
imported green onions. Similar surveillance systems now exist in 
Europe, Pacific Rim countries, and Latin America. The CDC's 
Tuberculosis Genotyping Program, initiated in fiscal year 2004, also 
fingerprints the genetic profiles of pathogens, enabling case 
investigators to assess very quickly how and where the bacterium is 
spreading. It already has described outbreaks in several states, 
permitting rapid deployment of preventive measures.

                       BIOTERRORISM PREPAREDNESS

    Defenses against possible bioterrorist attacks are a collaborative 
initiative among federal, state, and local agencies and authorities. 
The CDC is largely responsible for sufficient supplies of 
countermeasures such as vaccines and portable treatment units. The 
Administration proposes an increase of $56 million for bioterrorism 
preparedness activities at the CDC, for a total of $1.6 billion in 
fiscal year 2006. Six hundred million is proposed for further enhancing 
the Strategic National Stockpile (SNS). Specifically, the Medical 
Contingency Station project will be enhanced and increased funding will 
also help to pay for BioShield acquisitions and the purchase of 
additional anthrax antibiotics for the SNS. The CDC maintains the 
capacity to transport SNS materials and personnel to any location 
within the United States within 12 hours. During fiscal year 2004, the 
CDC nearly tripled the amount of medical countermeasures against 
anthrax, now capable of treating 30 million people.
    Since 2001, the CDC has recognized the importance of anti-
bioterrorism capabilities at the state and local levels, where attacks 
are most likely to occur. About $4.5 billion has been invested in CDC 
programs to assure state and local preparedness. The agency's 
Laboratory Response Network (LRN) now includes 134 reference labs in 
all states, up from 91 in 2001, nearly all capable of detecting agents 
of anthrax, tularemia and smallpox. Five veterinary diagnostic 
laboratories are now part of the system, recognizing the importance of 
animal-to-human transmission of disease pathogens. More than 8,800 
laboratory personnel have been trained for bioterrorism emergencies 
under CDC auspices. During fiscal year 2004, CDC invested about $846 
million to improve the ability of 62 state, local, and territorial 
health departments to respond to terrorism, infectious disease 
outbreaks, and other public health crises. The CDC funded the Cities 
Readiness Initiative, to boost delivery of medicines and other supplies 
during large-scale emergencies. The current proposed budget for fiscal 
year 2006 however, decreases support for state and local capacity. A 
report released this March by New York University concludes that 
bioterrorism-related training and equipping of local response personnel 
like paramedics have been seriously neglected, an example of yet unmet 
needs.

                        BUILDINGS AND FACILITIES

    Since 2001, the CDC has initiated or completed construction of more 
than 2.7 million square feet of laboratory and administrative space, 
replacing badly deteriorating buildings that were unsafe and 
inadequate. This year will mark the completion in Atlanta of a new 
Infectious Disease Laboratory, the Scientific Communications Center, 
the headquarters building with an Emergency Operations Center to 
coordinate quick responses, and the Environmental Toxicology 
Laboratory. The fiscal year 2006 request includes $22.5 million to 
complete a replacement Vector Borne Infectious Diseases lab in Fort 
Collins, Colorado and an additional $7.5 million to fund miscellaneous 
repairs and improvements. CDC's master plan for its buildings and 
facilities includes additional building renovations that are currently 
on hold, with hope to be funded in the near future. ASM applauds 
expenditures in recent years to replace the former CDC facilities in 
such poor condition and supports the completion of the master plan when 
funds can be allocated.
    The ASM appreciates the opportunity to provide written testimony 
and would be pleased to assist the Subcommittee as it considers its 
appropriation for the CDC for fiscal year 2006.
                                 ______
                                 
      Prepared Statement of the American Society for Microbiology

    The American Society for Microbiology (ASM), the largest single 
life science society with over 43,000 members, is pleased to submit a 
statement on the fiscal year 2006 appropriation for the National 
Institutes of Health (NIH). The ASM appreciates the strong support that 
the Congress has provided for NIH supported biomedical research. 
Congress's investment in NIH has paid tremendous dividends in terms of 
human health improvements. We can expect progress against disease to 
continue because of recent scientific advances and new opportunities 
for applications of research knowledge gained from basic research 
discoveries. The challenge of infectious diseases, cancer, diabetes and 
other chronic diseases will continue to increase, thus, strong support 
for NIH is needed.
    The ASM recommends a 6 percent increase in the budget for NIH in 
fiscal year 2006 and believes this increase would improve the pace of 
scientific investigation and the translation of science into new and 
better approaches to prevent, diagnose and treat diseases. A funding 
increase of this magnitude would allow NIH to take fuller advantage of 
innovative tools and technologies and the many extraordinary research 
achievements that have been made during the recent past. It would help 
to respond to urgent disease threats and realize more of the important 
medical treatment and public health goals that loom on the near 
horizon.
    The ASM considers a 6 percent increase justified for NIH if it is 
to continue current programs and deal with new and pressing needs, 
including the threat from pandemic influenza, other emerging infectious 
diseases such as the recent and unexpected outbreak of SARS, the AIDS 
pandemic, a myriad of infectious and chronic diseases that continue to 
take a human toll worldwide and biodefense initiatives.
    Since fiscal year 2003, the NIH budget has flattened, and at less 
than 1 percent, the proposed fiscal year 2006 budget increase will 
result in difficult funding decisions for research programs. Because 
the budget request for NIH falls below the current biomedical rate of 
inflation, which is about 3.5 percent, biomedical research will face a 
slowdown in the pace of scientific progress. This static state in 
funding comes at a rare time with unprecedented opportunities for major 
advances in human health and also at the very time that our nation's 
competitors are significantly increasing their investments in research. 
Their investments are based on the demonstrated positive impact of 
biotechnology and biomedical research on economic development. The 
European Union has set a goal of becoming the most competitive 
knowledge based economy in the world by 2010. Without increased 
investment in federally funded research in the United States, we stand 
to diminish the growth of U.S. technology.

                      BASIC RESEARCH AND TRAINING

    The ASM emphasizes the importance of providing increased support 
for basic research and the training and participation of young 
investigators in biomedical fields. Basic research and human ingenuity 
provide the underpinning of new knowledge that is necessary for 
successful medical breakthroughs. Basic research drives scientific 
creativity and productivity, making increased funding for investigator 
initiated research project grants a particularly critical issue when 
making funding decisions. Under the proposed fiscal year 2006 budget 
for NIH, the total number of research project grants (RPGs) supported 
falls below that of fiscal year 2005 by over 400 and no inflationary 
increases are provided for direct, recurring costs in noncompeting 
RPGs. The ASM recommends increased funding for NIH to ensure a 
continuum of high quality research project grants and scientist 
training programs to keep biomedical research in the future as vigorous 
as it is today.
    Specifically, ASM draws attention to the fact that scientific 
knowledge of microbes and their role in life and in the environment is 
key to new discoveries that will benefit human health. For example, the 
study of microbes resulted in the discovery that DNA is the genetic 
material of life and was responsible for the molecular revolution that 
has transformed biology. Research into basic life processes of bacteria 
is a critical underpinning of cellular studies that contribute to 
progress in the life sciences. Research on bacteria is urgent because 
more bacteria are becoming resistant to antibiotics, raising the 
specter of untreatable diseases. NIH should increase support for basic 
microbiology research and training and review research portfolios of 
the National Institute of General Medical Sciences (NIGMS), which 
provides support for fundamental research, and coordinate with other 
agencies such as the National Science Foundation (NSF) and the 
Department of Energy (DOE) to ensure that scientific opportunities in 
important areas of basic bacteriology physiology and genetics research 
are receiving adequate attention. The ASM recommends that NIH take 
steps such as workshops, requests for proposals and training grants to 
increase the infrastructure in this important area of science.

                          INFECTIOUS DISEASES

    Over the past 10 years, new and emerging microbial threats have 
continued to challenge the research community as well as the public 
health infrastructure. Despite scientific and medical advances, 
infectious diseases persist as the third leading cause of death in the 
United States and the second leading cause of death worldwide. A recent 
report from the Institute of Medicine on microbial threats to public 
health concluded that a comprehensive infectious disease research 
agenda is essential for successful anti-disease campaigns. The basic 
and applied research supported by the National Institute of Allergy and 
Infectious Diseases (NIAID) is essential to responding to infectious 
disease public health challenges. Unfortunately, the budget for the 
NIAID would increase by only 1.3 percent in the request for fiscal year 
2006, far less than the amount needed to maintain or accelerate NIAID 
supported work to combat a myriad of infectious diseases.
    Influenza is a familiar infectious disease threat with the proven 
potential for decimating pandemics. Influenza develops in about 20 
percent of U.S. citizens each year and an estimated 36,000 die annually 
from complications of influenza in the United States, with 250,000 to 
500,000 deaths worldwide. In the United States influenza and pneumonia 
remain the leading infectious cause of mortality and are ranked seventh 
among all causes of death. Influenza viruses steadily mutate and new 
strains periodically move from animal hosts to humans. World attention 
is drawn to outbreaks of avian influenza in Southeast Asia with about 
55 infected persons and 42 deaths since January 2004. The current 
strain of H5N1 influenza could acquire characteristics that permit 
transmission among humans which could lead to a worldwide influenza 
pandemic. The 1918 influenza pandemic killed at least 20 million people 
and pandemic avian influenza could kill millions of people. The NIH 
Influenza Genomics Project conducts rapid sequencing of the complete 
genomes of thousands of avian and human influenza viruses and newly 
emerging ones and will study the molecular basis of how new strains of 
influenza virus emerge and characteristics that contribute to 
virulence. Research is being done to develop a live attenuated vaccine 
candidate against each of 15 isolated hemagglutinin proteins that may 
speed the development of a vaccine against a potential pandemic strain. 
Using reverse genetics technology, a genetically engineered vaccine 
candidate against H5N1 was developed in weeks. This technology was also 
used to identify a genetic mutation in a H5N1 viral gene that makes the 
virus more lethal.
    In late 2002, Severe Acute Respiratory Syndrome (SARS) became the 
first severe newly emergent infectious disease of the 21st century, but 
was rapidly characterized and contained. Because of air travel by its 
earliest victims, SARS reached five countries within 24 hours and more 
than 30 countries on 6 continents within 6 months of the initial 
diagnosed case. Nearly 8,000 persons became ill and international 
travel and trade were greatly affected. The global cost of SARS has 
been estimated at about $80 billion. NIAID funded research in 
collaboration with the Centers for Disease Control and Prevention (CDC) 
demonstrated that SARS is a viral disease and a new coronavirus was 
identified quickly as the causative agent. By May of 2003, an 
international collaboration of researchers had decoded the genetic 
sequence of the virus to develop a candidate vaccine that in November 
2004 entered early phase tests in humans. Less than 2 years separated 
the discovery that SARS is a new infectious disease and the beginning 
of vaccine testing in humans, a process that traditionally can take 
decades. Results came quickly because of research and public health 
cooperation, NIAID resources and new molecular biology techniques. 
Research and technology developed during past disease outbreaks 
facilitate NIAID responses to unique or sporadic challenges like SARS, 
West Nile virus, Ebola virus, and bovine spongiform encephalopathy.
    Research yields major insights into the pathogenic mechanisms of 
established diseases such as HIV/AIDS, tuberculosis and malaria. An 
estimated 40 million people worldwide are living with HIV/AIDS. NIAID 
research has made possible critical discoveries about the basic biology 
of HIV and the immune response to HIV infection which has led to the 
development of therapies that suppress the growth of the virus. 
Approximately 20 antiretroviral medications that target HIV have been 
developed and approved by the Food and Drug Administration. More 
scientific research is needed on the virus to identify additional 
targets for therapeutic interventions and vaccines. Despite the fact 
that tuberculosis (TB) is one of the oldest infectious diseases known, 
the global incidence rate is still increasing. More than one third of 
the world is latently infected with TB. Every day there are 5,000 
deaths due to TB. A big part of the problem is the increasing number of 
patients with the deadly combination of TB and HIV. The only available 
medicines to treat and diagnose TB are from another era. Rapid 
development of new tools is greatly needed to address the growing 
problems of multi-drug resistant TB. Malaria is one of the major 
killers of humans in the world with an estimated 300 million acute 
illnesses each year and more than 1 million deaths. Both tuberculosis 
and malaria pathogens are increasingly resistant to commonly used 
antimicrobial drugs. Genomic and postgenomic techniques are being 
applied to identify key molecular pathways that could be exploited to 
develop TB interventions and vaccines. The complete genomic sequence of 
the malaria vector and parasite were completed in 2002, providing 
powerful tools to further characterize the genes and proteins involved 
in the life cycle of the malaria parasite. NIAID supported programs in 
basic and applied areas are contributing to knowledge that is needed to 
design new vaccines, therapeutics and diagnostics against these 
formidable infectious diseases that exact a terrible social, economic 
and human toll globally.
    The NIAID research portfolio is challenged as never before to 
address new and emerging infectious diseases and those that have 
affected humans for thousands of years but are still a public health 
threat. NIAID supports important research on the hepatitis viruses 
which cause liver inflammation and tissue damage and can cause chronic 
infections. There are more than 25 identified sexually transmitted 
infections (STIs) that affect more than 15 million people in the United 
States. STIs can lead to infertility, complications in pregnancy, 
cervical cancer, low birth weight, congenital/perinatal infections and 
other chronic conditions and are of critical global and national health 
priority because of their impact on women and infants. NIAID basic and 
clinical research studies on mechanisms of pathogenesis of STIs and 
prevention strategies for the control of these infections are 
essential. Bacterial and viral infections of the gastrointestinal tract 
often lead to diarrheal disease and to chronic conditions such as 
ulcers and stomach cancer. In the United States, diarrhea is the second 
most common infectious illness and diarrheal diseases account for 15 to 
34 percent of deaths in some countries. Infection with Helicobacter 
pylori is a major risk factor for developing peptic ulcer disease, 
stomach cancer and primary gastric B cell lymphoma. NIAID supports 
research to understand, prevent and treat enteric diseases through a 
variety of initiatives. NIAID also sponsors research on West Nile 
Virus, which first emerged in 1999 in New York City, other insect-borne 
diseases such as Lyme Disease and fungal diseases that can cause severe 
systemic infections.

                          BIODEFENSE RESEARCH

    The NIH is responsible for the implementation of the strategic plan 
for biodefense research. The NIH biodefense budget, proposed at $1.7 
billion for fiscal year 2006, is part of the budget for NIAID, the lead 
agency at NIH for infectious diseases and immunology research. Research 
is the backbone of the NIAID biodefense efforts and includes genomics 
and studies of pathogenesis and host defense, microbial physiology and 
animal disease models. Sustained funding by the Administration and 
Congress over the past few years is making possible significant 
progress evidenced by over 60 NIAID biodefense initiatives now in 
place.
    Following the September 11, 2001 terrorist attack in the United 
States and terrorist events using biological agents, awareness about 
the potential of bioterrorism and the vulnerability of people to a 
bioterrorism event prompted the U.S. Government to pursue a range of 
programs and capabilities to prepare for future emergencies (Homeland 
Security Presidential Directive 10). Among these was increased funding 
for research and development of medical countermeasures within the 
Department of Health and Human Services to enable the country to mount 
a successful medical and public health response to a biological attack 
on the civilian population should such a terrible event occur. In 2002 
the ASM testified before Congress that pathogenic microbes pose a 
threat to national security whether they occur naturally or are 
released in a bioterrorism attack. Biodefense research is part of the 
continuum of biomedical research aimed at protecting the nation and the 
world against infectious diseases. The ASM supports having federal 
biomedical and infectious disease research efforts related to civilian 
human health prioritized and conducted by and at the direction of the 
DHHS and NIH.
    In early 2002, the NIAID convened a panel of experts, the Blue 
Ribbon Panel on Bioterrorism and Its Implications for Biomedical 
Research, to provide guidance on the future biodefense research agenda, 
research resources, facilities and scientific personnel. The NIAID 
developed research priorities and goals for potential agents of 
bioterrorism with particular emphasis on the ``Category A'' agents 
considered by the CDC and NIH as the worst currently recognized 
potential bioterror threats. The NIAID developed the NIAID Strategic 
Plan for Biodefense Research, The NIAID Biodefense Research Agenda for 
CDC Category A Agents, and the NIAID Biodefense Research Agenda for 
Category B and C Priority Pathogens. Approximately 60 NIAID initiatives 
were funded in fiscal years 2002-2004, including funding for a network 
of 8 nationwide multidisciplinary Regional Centers of Excellence (RCE) 
for Biodefense and Emerging Infectious Diseases Research, 2 National 
Biocontainment Laboratories (NBLs), and 9 Regional Biocontainment 
Laboratories (RBLs) to provide secure space for the expanded civilian 
biodefense research program. The genomes of the biological agents 
listed as posing the most severe threats have been sequenced; new 
animal models have been developed to test promising drugs and 
repositories have been established to catalog reagents and specimens. 
NIAID is sponsoring basic research to understand structure, biology and 
mechanisms by which potential bioweapons cause disease, studies to 
elucidate how the human immune system responds to dangerous pathogens 
and technology to translate basic research into medical countermeasures 
to detect, prevent and treat diseases caused by potential biological 
weapons.
    Advances in biodefense research are outlined in the NIAID 
Biodefense Research Agenda for CDC Category A Agents Progress Report 
and the NIAID Biodefense Research Agenda for Category B and C Priority 
Pathogens Progress Report. NIAID supported biodefense research is 
conducted through collaborataive efforts with academic institutions and 
public/private partnerships and scientific communications are open, 
facilitating scientific and medical progress against infectious 
diseases. NIAID anticipates that the large investment mandated by the 
government in civilian biodefense research will advance scientific 
knowledge that will have positive spin offs for other diseases.
                                 ______
                                 
          Prepared Statement of the American Thoracic Society

                    SUMMARY: FUNDING RECOMMENDATIONS
                        [In millions of dollars]
------------------------------------------------------------------------
                         Agency                               Amount
------------------------------------------------------------------------
National Institutes of Health...........................        30,000.0
    National Heart, Lung and Blood Institute............         3,117.0
    National Institute of Allergy and Infectious Disease         4,667.0
    National Institute of Environmental Health Sciences.           680.0
    Fogarty International Center........................            71.5
    National Institute of Nursing Research..............           146.0
Centers for Disease Control and Prevention..............         8,500.0
    National Institute for Occupational Safety and                 326.0
     Health.............................................
    Environmental Health: Asthma Activities.............            70.0
    Tuberculosis Control Programs.......................           215.0
------------------------------------------------------------------------

    The American Thoracic Society (ATS) is pleased to submit our 
recommendations for programs in the Labor Health and Human Services and 
Education Appropriations Subcommittee purview.
    The American Thoracic Society, founded in 1905, is an independently 
incorporated, international education and scientific society that 
focuses on respiratory and critical care medicine. For 100 years, the 
ATS has continued to play a leadership role in scientific and clinical 
expertise in diagnosis, treatment, cure and prevention of respiratory 
diseases. With approximately 13,500 members who help prevent and fight 
respiratory disease around the globe, through research, education, 
patient care and advocacy, the Society's long-range goal is to decrease 
morbidity and mortality from respiratory disorders and life-threatening 
acute illnesses.

                        LUNG DISEASE IN AMERICA

    Lung disease in America is a serious problem. Each year, an 
estimated 342,000 Americans die of lung disease. Lung disease is 
responsible for one in every seven deaths, making it America's number 
three cause of death. More than 35 million Americans suffer from a 
chronic lung disease. In 2005, lung diseases cost the U.S. economy an 
estimated $139.6 billion in direct and indirect costs, a total of 5.9 
percent of the U.S. economy.
    Lung diseases represent a spectrum of chronic and acute conditions 
that interfere with the lung's ability to extract oxygen from the 
atmosphere, protect against environmental or biological challenges and 
regulate a number of metabolic processes. Lung diseases include chronic 
obstructive pulmonary disease, lung cancer, tuberculosis, influenza, 
sleep disordered breathing, pediatric lung disorders, occupational lung 
disease, sarcoidosis, asthma and severe acute respiratory syndrome 
(SARS).
    The ATS is pleased that the Subcommittee provided increases in the 
National Institutes of Health (NIH) and the Centers for Disease Control 
and Prevention (CDC) budget last fiscal year. However, we are extremely 
concerned with the president's fiscal year 2006 budget that proposes a 
mere 0.5 percent increase for NIH and significant cuts for CDC. We ask 
that this Subcommittee recommend a 6 percent increase for NIH and an 
8.1 percent increase for the CDC. In order to stem the devastating 
effects of lung disease, research funding must continue to grow to 
sustain the medical breakthroughs made in recent years. There are three 
lung diseases that illustrate the need for further investment in 
research and public health programs: Chronic Obstructive Pulmonary 
Disease, pediatric lung disease, specifically asthma and tuberculosis.

                                  COPD

    Chronic Obstructive Pulmonary Disease (COPD) is the fourth leading 
cause of death in the United States and the third leading cause of 
death worldwide. Yet, COPD remains relatively unknown to most 
Americans. COPD is the term used to describe the airflow obstruction 
associated mainly with emphysema and chronic bronchitis and is a 
growing health problem.
    While the exact prevalence of COPD is not well defined, it affects 
tens of millions of Americans and can be an extremely debilitating 
condition. It is estimated that 11.2 million patients have COPD while 
an additional 13 million Americans are unaware that they have this life 
threatening disease.
    According to the National Heart, Lung and Blood Institute (NHLBI), 
COPD cost the U.S. economy an estimated $37.2 billion in 2004. 
Unfortunately, NHLBI spends about $44,000 a year on COPD research. We 
recommend the Subcommittee encourage NHLBI to devote additional 
resources to finding improved treatments and a cure for COPD.
    Medical treatments exist to relieve symptoms and slow the 
progression of the disease. Today, COPD is treatable but not curable. 
Fortunately, promising research is on the horizon for COPD patients. 
Despite these leads, the ATS feels that research resources committed to 
COPD are not commensurate with the impact COPD has on the United States 
and the world. Clearly more needs to be done to make Americans aware of 
COPD, its causes and symptoms. We were pleased to participate in an 
NHLBI-sponsored workshop to formulate strategies toward implementing a 
National COPD Education and Prevention Program. As this effort 
continues, we encourage the NHLBI to maintain its partnership with the 
patient and physician community in the next stages in the development 
of the National COPD Education and Prevention Program.
    While additional resources are needed at NIH to conduct COPD 
research, CDC has a role to play as well. The ATS encourages the CDC to 
add COPD-based questions to future CDC health surveys, including the 
National Health and Nutrition Evaluation Survey (NHANES), the National 
Health Information Survey (NHIS) and the Behavioral Risk Factor 
Surveillance Survey (BRFSS). By collecting information on the 
prevalence of COPD, researchers and public health professionals will be 
better able to understand and control the disease.

                         PEDIATRIC LUNG DISEASE

    Lung disease affects people of all ages. The ATS is pleased to 
report that infant death rates for various lung diseases have declined 
for the past ten years. However, of the seven leading causes of infant 
mortality, four are lung diseases or have a lung disease component. In 
2002, lung diseases accounted for 21 percent of all deaths under one 
year of age. It is also widely believed that many of the precursors of 
adult respiratory disease start in childhood. The ATS encourages the 
NHLBI to continue with its research efforts to study lung development 
and pediatric lung diseases.
    The pediatric origins of chronic lung disease extend back to early 
childhood factors. For example, many children with respiratory illness 
are growing into adults with COPD. In addition, it is estimated that 
close to 20.3 million people suffer from asthma, including an estimated 
6.1 million children. While some children appear to outgrow their 
asthma when they reach adulthood, 75 percent will require life-long 
treatment and monitoring of their condition. Asthma is the third 
leading cause of hospitalization among children under the age of 15 and 
is the leading cause of chronic illness among children.
    The ATS feels that the NIH and the CDC must play a leadership role 
in the ways to assist those with asthma. National statistical estimates 
show that asthma is a growing problem in the United States. However, we 
do not have accurate data that provide regional and local information 
on the prevalence of asthma. To develop a targeted public health 
strategy to respond intelligently to asthma, we need locality-specific 
data. CDC should take the lead in collecting and analyzing this data.
    Last year, Congress provided approximately $32 million for the CDC 
to conduct asthma programs. We recommend that CDC be provided $70 
million in fiscal year 2006 to expand programs and establish grants to 
community organizations for screening, treatment, education and 
prevention of childhood asthma.

                              TUBERCULOSIS

    Tuberculosis (TB) is a global public health crisis that remains a 
concern for the United States. Tuberculosis is an airborne infection 
caused by a bacterium, Mycobacterium tuberculosis. Tuberculosis 
primarily affects the lungs but can also affect other parts of the 
body, such as the brain, kidneys or spine. The statistics for TB are 
alarming. Globally, one-third of the world's population is infected 
with the TB germ, 8-10 million active cases develop each year and 2-3 
million people die of tuberculosis annually. It is estimated that 10-15 
million Americans have latent tuberculosis. Tuberculosis is the leading 
cause of death for people with HIV/AIDS.
    While we are pleased that CDC has reported 12 straight years of 
decline in United States. TB rates, we remain concerned that TB rates 
in African Americans remain high and the TB rates in foreign-born 
Americans is growing. In addition, there has also been an increase in 
the number of TB cases among people with HIV/AIDS, prisoners, the 
homeless and certain immigrant communities.
    Upon review of this information, many have concluded that a cycle 
of neglect has begun, reminiscent of a previous resurgence in the early 
1980's. The ATS, in collaboration with the National Coalition for 
Elimination of Tuberculosis, recommends an increase of $105 million for 
TB control in fiscal year 2006 to allow the CDC undertake an 
unprecedented initiative, Intensified Support and Activities to 
Accelerate Control (ISAAC), to enhance, maximize and target resources 
to sustain the momentum of the past decade and accelerate the control 
and elimination of tuberculosis. ISAAC targets tuberculosis in African 
Americans, tuberculosis along the United States-Mexico border, allows 
for universal genotyping of all culture positive TB cases, and expands 
clinical trials for new tools for the diagnosis and treatment of 
tuberculosis.
    In the efforts to eliminate tuberculosis, it is important to note 
that in 2004 foreign-born residents accounted for nearly 54 percent of 
U.S. tuberculosis cases. The CDC is working to enhance screening of 
immigrants and refugees overseas, test recent arrivals from countries 
that have high TB rates, and cooperate with authorities to control 
tuberculosis along the United States-Mexico border.
    The NIH also has a prominent role to play in the elimination of 
tuberculosis. Currently there is no highly effective vaccine to prevent 
TB transmission. However, the recent sequencing of the TB genome and 
other research advances have put the goal of an effective TB vaccine 
within reach. The National Institute of Allergy and Infectious Disease 
has developed a Blueprint for Tuberculosis Vaccine Development. We 
encourage the Subcommittee to fully fund the TB vaccine blueprint. We 
also encourage the NIH to continue efforts to develop drugs to combat 
multi-drug resistant tuberculosis a serious emerging public health 
threat.
    It is clear that efforts to eliminate tuberculosis must continue. 
From recent TB outbreaks in Fort Wayne, IN and Chesapeake, VA to the 
hundreds of people being tested for tuberculosis in Houston, TX and 
Santa Barbara, CA, tuberculosis is still a problem in the United States 
today.

                       PHYSICIAN WORKFORCE SUPPLY

    As the number of people diagnosed with lung diseases rises, we need 
to ask, who will be treating lung disease patients in the future? The 
ATS is concerned about the supply of physicians in the United States. A 
recent study published in the Journal of the American Medical 
Association predicts that there will be an acute shortage of physicians 
trained to treat patients with critical care illness and lung disease 
starting in 2007.\1\ While the study focuses on supply of pulmonary/
critical care physicians, what is driving the shortage is the 
predicated increase in demand for physician services caused by the 
aging of the U.S. population.
---------------------------------------------------------------------------
    \1\ D. Angus, et al. Current and Project Workforce Requirements for 
Care of the Critically Ill and Patients with Pulmonary Disease: Can We 
Meet the Requirements of an Aging Population? JAMA 2000; 284:2762-2770.
---------------------------------------------------------------------------
    We are pleased that the Bureau of Workforce Analysis at Health 
Resources and Services Administration (HRSA) has taken an interest in 
this issue and will soon be releasing a study on pulmonary/critical 
care physician supply in the United States. We believe the HRSA study 
will confirm an existing shortage of pulmonary and critical care 
physicians. Should the HRSA study confirm a shortage of physicians, 
Congress will then need to take action to address the shortage before 
it reaches a crisis. Potential steps Congress could take include: 
increasing existing caps on training positions for pulmonary/critical 
care, expanding the J-1 visa waiver program, increasing class sizes in 
medical schools, and expanding loan forgiveness and accelerated 
deductions of interests on loans for students enrolled in critical care 
training programs.

                LUNG-DISEASE OPPORTUNITIES AND ADVANCES

    Pulmonary researchers have made significant advances in lung 
disease research. The following are identified areas of lung disease 
research that the NHBLI has said it will be exploring in the next year:
  --HIV-Related Pulmonary Complications. As mentioned earlier, the rate 
        of persons with HIV who are also contracting TB are steadily 
        growing. We applaud the NHLBI for its research on the roles of 
        co-infections, immune factors and genetic predisposition in the 
        pathogenesis of HIV-related pulmonary disease.
  --COPD and lung cancer research. Nearly a quarter of a million 
        Americans die each year of either COPD or lung cancer. NHLBI 
        hopes to address the gap in knowledge that a common 
        pathogenetic mechanism may be involved as a risk factor for 
        COPD and lung cancer. The research will focus on a search for 
        the similarities of the cellular and molecular mechanisms that 
        lead to COPD and lung cancer. This new research could have 
        important implications for the prevention and management of 
        both diseases.
  --Sleep Apnea or Sleep Disordered Breathing (SDB). SDB is a medical 
        condition associated with upper airway obstruction and 
        cessation of breathing that leads to repeated episodes of 
        asphyxia during the night. SDB is very prevalent in the U.S. 
        population with conservative estimates set at 2 percent to 3 
        percent of all children, 5 percent of middle age adults, and in 
        excess of 15 percent of the aged population. The major health-
        related implications and morbid consequences of SDB include the 
        neurocognitive and cardiovascular morbidities, depression, 
        hypertension, increased frequency of myocardial infarction and 
        stroke, and increased frequency of motor vehicle accidents due 
        to the increased sleepiness induced by the disruption of sleep 
        in SDB patients. Both the frequency of SDB and its consequences 
        are anticipated to increase in the next decades due to the 
        aging of the overall U.S. population and the ongoing epidemic 
        of obesity that afflicts our country. The ATS supports the need 
        for more research into the causes, diagnosis and treatment of 
        SDB.
    In conclusion, lung disease is a growing problem in the United 
States. It is this country's third leading cause of death, responsible 
for one in seven deaths. The lung disease death rate continues to 
climb. Overall, lung disease and breathing problems constitute the 
number one killer of babies under the age of one year. Worldwide, 
tuberculosis kills 3 million people each year, more people than any 
other single infectious agent. The level of support this Subcommittee 
approves for lung disease programs should reflect the urgency 
illustrated by these numbers.
                                 ______
                                 
 Prepared Statement of the Centers for Disease Control and Prevention 
                            (CDC) Coalition

    The CDC Coalition is a nonpartisan association of more than 100 
groups committed to strengthening our nation's prevention programs. Our 
mission is to assure that health promotion and disease prevention are 
given top priority in federal funding, to support a funding level for 
the Centers for Disease Control and Prevention (CDC) that enables it to 
carry out its prevention mission, and to assure an adequate translation 
of new research into effective state and local programs. Coalition 
member groups represent millions of public health workers, researchers, 
educators, and citizens served by CDC programs. We are grateful for the 
opportunity to present our views to the Subcommittee.
    It is time to support CDC as an agency--not just the individual 
programs that it funds. In the best professional judgment of the CDC 
Coalition--given the challenges and burdens of chronic disease, 
terrorism and disaster preparedness, new and re-emerging infectious 
diseases and our many unmet public health needs and missed prevention 
opportunities--the agency will require funding of $8.65 billion to 
support its mission for fiscal year 2006.
    The CDC Coalition is pleased with the support the Subcommittee has 
given to CDC programs over the years, including your recognition of the 
need to fund chronic disease prevention, infectious disease 
preparedness, and environmental health programs. By translating 
research findings into effective intervention efforts in the field, the 
agency has been a key source of funding for many of our state and local 
programs that aim to improve the health of communities. Perhaps more 
importantly, federal funding through CDC provides the foundation for 
our state and local public health departments, supporting a trained 
workforce, laboratory capacity and public health education 
communications systems.
    CDC also serves as the command center for our nation's public 
health defense system against emerging and reemerging infectious 
diseases. From anthrax to West Nile to smallpox to SARS, the Centers 
for Disease Control and Prevention is the nation's--and the world's--
expert resource and response center, coordinating communications and 
action and serving as the laboratory reference center. States and 
communities rely on CDC for accurate information and direction in a 
crisis or outbreak.
    In fiscal year 2002, Congress appropriated $7.7 billion for CDC. In 
fiscal years 2003, 2004 and 2005, Congress appropriated $7.1 billion, 
$7.2 billion, and $8.0 billion, respectively. Now the President's 
proposed budget for the agency in fiscal year 2006 is $7.5 billion--a 
$500 million cut from last year's funding, and $200 million below the 
fiscal year 2002 funding level. We are moving in the wrong direction. 
Public health is being asked to do more, not less. As far as we can 
tell, in light of the current workload placed on the public health 
service--in addition to the threat of emerging diseases such as the 
avian flu--it simply does not make any sense to cut the budget for CDC 
at a time when the threats to public health are so great. Funding 
public health outbreak by outbreak is not an effective way to ensure 
either preparedness or accountability.
    Until we are committed to a strong public health system, every 
crisis will force trade offs. For instance, the Administration's recent 
reprogramming request to make up for the vaccine shortage with money 
originally appropriated by Congress for chronic disease prevention 
programs (COPP and the Preventive Health and Health Services Block 
Grant) and bioterror preparedness funds is the most recent concrete 
example of attention to one disease coming at the expense of another.
    CDC serves as the lead agency for bioterrorism preparedness and 
must receive sustained support for its preparedness programs in order 
for our nation to meet future challenges. In the best professional 
judgment of CDC Coalition members, given the challenges of terrorism 
and disaster preparedness, and our many unmet public health needs and 
missed prevention opportunities, the agency will require at least level 
funding to adequately fulfill its mission for fiscal year 2006.
    We are concerned that the President's budget proposes cutting the 
state and local capacity grants for terrorism by almost $130 million, 
and eliminating the anthrax preparedness program. We encourage the 
Subcommittee to restore these cuts to ensure that our local communities 
can be prepared in the event of an act of terrorism.
    Heart disease remains the nation's number one killer. In 2002, 
696,947 people died of heart disease (51 percent of them women), 
accounting for 29 percent of all U.S. deaths. Stroke is the third 
leading cause of death after heart disease and cancer and a leading 
cause of serious, long-term disability. In 2002, stroke killed 162,672 
people (62 percent of them women), accounting for about 1 of every 15 
deaths. In 1998, the U.S. Congress provided funding for CDC to initiate 
a national, state-based heart disease and stroke prevention program 
with funding for eight states. Currently, 32 states and the District of 
Columbia are funded, 21 as capacity building programs and 12 as basic 
implementation programs. The CDC Coalition recommends $55.6 million for 
the Heart Disease and Stroke Prevention Program.
    The CDC carries out crucial work to reduce the incidence, morbidity 
and mortality of cancer through prevention, early detection, treatment, 
rehabilitation, and palliation. Cancer is the second leading cause of 
death in the United States. In 2004, about 1.4 million new cases of 
cancer will be diagnosed, and more than 563,700 Americans--about 1,500 
people a day--will die of the disease. The financial cost of cancer is 
also significant. According to the National Institutes of Health, in 
2003, the overall cost for cancer in the United States was $189.5 
billion: $64.2 billion for direct medical expenses, $16.3 billion for 
lost worker productivity due to illness, and $109 billion for lost 
worker productivity due to premature death. Among the ways they are 
fighting cancer, the CDC funds programs to detect colorectal, ovarian, 
prostate, skin, breast and cervical cancers, as well as maintain a 
cancer registry to track cancer incidence. The CDC coalition recommends 
$385 million for the Cancer Prevention and Control activities of the 
CDC.
    Nearly 16 million Americans have diabetes, including over 5 million 
who don't know it. During 1980-2002, the number of people with diabetes 
in the United States more than doubled, from 5.8 million to 13.3 
million. Although more than 18 million Americans have diabetes, 5.2 
million cases are undiagnosed. Each year, 12,000-24,000 people with 
diabetes become blind, more than 42,800 develop kidney failure, and 
about 82,000 have leg, foot, or toe amputations. Preventive care such 
as routine eye and foot examinations, self-monitoring of blood glucose, 
and glycemic control could reduce these numbers. Without additional 
funds, most states will not be able to create programs based on these 
new data. States also will continue to need CDC funding for diabetes 
control programs that seek to reduce the complications associated with 
diabetes. The CDC Coalition recommends $150 million for CDC's diabetes 
prevention efforts.
    Over the last 25 years, obesity rates have doubled among United 
States adults and children, and tripled in teens. Obesity, diet and 
inactivity are cross-cutting risk factors that contribute significantly 
to heart disease, cancer, stroke and diabetes. The CDC funds programs 
to encourage the consumption of fruits and vegetables, to get 
sufficient exercise, and to develop other habits of healthy nutrition 
and activity. The CDC Coalition recommends $70 million for CDC's 
Division of Nutrition and Physical Activity.
    Arthritis and chronic joint symptoms affect nearly 70 million 
Americans, or about one of every three adults, making it one of the 
most prevalent diseases in the United States. As the population ages, 
this number will increase dramatically. The CDC Coalition recommends 
$25 million for the arthritis programs of the CDC.
    More than 400,000 people die prematurely every year due to tobacco 
use. The CDC's tobacco control efforts seek to prevent tobacco addition 
in the first place, as well as help those who want to quit with ways to 
do so. The CDC Coalition recommends $145 million for the CDC's tobacco 
control programs.
    Each day 4,400 young people try their first cigarette. At the same 
time, daily participation in high school physical education classes 
dropped from 42 percent in 1991 to 32 percent in 2001. Almost 80 
percent of young people do not eat the recommended number of servings 
of fruits and vegetables, while nearly 30 percent of young people are 
overweight or at risk of becoming overweight. And every year, almost 
800,000 adolescents become pregnant and about 3 million become infected 
with a sexually transmitted disease. School health programs are one of 
the most efficient means of correcting these problems, shaping our 
nation's future health, education, and social well-being. CDC's 
Adolescent and School Health program supports coordinated school health 
programs that reduce disease risk factors. In 2003, CDC supported 22 
state-coordinated school health programs. The CDC Coalition recommends 
$82.4 million for school health programs.
    The President's budget proposes the elimination of the Childhood 
Obesity Prevention Program (COPP), also referred to as the VERB or CDC 
Youth Media campaign. The success of the COPP program shows that over 
30 percent of the target audience, children ages 9 to 10 years old, 
increased their physical activity as a direct result of the VERB media 
campaign. This type of success warrants continued funding to empower 
our children to respond to the growing concerns of the obesity epidemic 
and improve the health of this nation. We encourage the Subcommittee to 
restore the cuts and fund the COPP program at $70 million.
    Public health programs delivered at the local level should be 
flexible to respond to local needs. Within an otherwise-categorical 
funding construct, the Preventive Health and Health Services Block 
Grant is the only source of flexible dollars for states and localities 
to address their unique public health needs. The track record of 
positive public health outcomes from Prevention Block Grant programs is 
strong, yet so many requests go unfunded. However, the President's 
budget proposes the elimination of the Preventive Health and Health 
Services Block Grant. As states use their Prevention Block Grant 
dollars to address high priority needs such as emerging and chronic 
diseases, child safety seat programs, suicide prevention, smoke 
detector distribution and fire safety programs, adult immunization, 
oral health, worksite wellness, infectious disease outbreaks, food 
safety, emergency medical services, safe drinking water, and 
surveillance needs--we can scarcely understand why the Prevention Block 
Grant should be eliminated. In fact, the Prevention Block Grant has 
been flat funded since fiscal year 2000. We encourage the Subcommittee 
to restore the cuts and fund the Prevention Block Grant at $132 
million.
    Much of CDC's work in chronic disease prevention and health 
promotion, and in other programs areas, is guided by its prevention 
research activities. Prevention research considers the factors 
associated with illness, disability, and injury, such as lifestyles or 
exposure to environmental toxins, and the best ways to address these 
factors and thereby promote health. By answering these questions, 
prevention research links biomedical research, which focuses on human 
physiology and disease treatment, to policies and public health 
interventions that promote wellness and reduce the need for treatment.
    CDC provides national leadership in helping control the HIV 
epidemic by working with community, state, national, and international 
partners in surveillance, research, prevention and evaluation 
activities. These activities are critically important, as CDC estimates 
that between 800,000 and 900,000 Americans currently are living with 
HIV. Also, the number of people living with AIDS is increasing, as 
effective new drug therapies are keeping HIV-infected persons healthy 
longer and dramatically reducing the death rate. Prevention of HIV 
transmission is our best defense against the AIDS epidemic that has 
already killed over 400,000 U.S. citizens and is devastating the 
populations of nations around the globe, and CDC's HIV prevention 
efforts must be expanded.
    Elimination of tuberculosis and sexually transmitted diseases 
(STDs), especially syphilis, is now within our grasp. These welcome 
opportunities, if adequately funded now, will save millions in annual 
health care costs in the future. Untreated STDs contribute to infant 
mortality, infertility, and cervical cancer. State and local STD 
control programs depend heavily on CDC funding for their operational 
support.
    CDC conducts the National Health and Nutrition Examination Survey 
(NHANES), the only national source of objective health data to provide 
accurate estimates of diagnosed and undiagnosed medical conditions in 
the population. NHANES is a unique collaboration between CDC, the 
National Institutes of Health (NIH), and others to obtain data for 
biomedical research, public health, tracking of health indicators, and 
policy development. Through physical examinations, clinical and 
laboratory tests, and interviews, NHANES assesses the health status of 
adults and children in the United States. Mobile exam centers travel 
throughout the country to collect data on chronic conditions, 
nutritional status, medical risk factors (e.g., high cholesterol level, 
obesity, high blood pressure), dental health, vision, illicit drug use, 
blood lead levels, food safety, and other factors that are not possible 
to assess by use of interviews alone. Findings from this survey are 
essential for determining rates of major diseases and health conditions 
and developing public health policies and prevention interventions.
    We must address the growing disparity in the health of racial and 
ethnic minorities. CDC's REACH 2010 Demonstration Program, Racial and 
Ethnic Approaches to Community Health (REACH), helps states address 
these serious disparities in infant mortality, breast and cervical 
cancer, cardiovascular disease, diabetes, HIV/AIDS and immunizations. 
The CDC Coalition recommends $50 million for the REACH program.
    The CDC Coalition is requesting a $5 million increase, for an 
appropriation of $46 million for Steps to a HealthierUS (STEPS) 
program. Additional resources will allow for the creation of programs 
in more states. Furthermore, while the President's budget request 
includes $1.5 million to support the YMCA Pioneering Healthier 
Communities initiative, $3 million is needed to fully fund and continue 
to expand this important effort. This would enable the funding 20 NEW 
Pioneering Healthier Community projects with one-time start up grants; 
provide funding for a conference in 2005 to train these community 
leadership teams, and establish an office within the Centers for 
Disease Control and Prevention that would assist YMCAs, non-profits and 
local/state health departments in initiating, evaluating and sustaining 
healthy community change efforts.
    CDC oversees immunization programs for children, adolescents and 
adults, and is a global partner in the ongoing effort to eradicate 
polio worldwide. The value of adult immunization programs to improve 
length and quality of life, and to save health care costs, is realized 
through a number of CDC programs, but there is much work to be done and 
a need for sound funding to achieve our goals. Influenza vaccination 
levels remain low for adults. Levels are substantially lower for 
pneumococcal vaccination. Significant racial and ethnic disparities in 
vaccination levels persist among the elderly. Childhood immunization 
programs at CDC also need a funding boost, to ensure sufficient 
purchase and delivery of the recently-approved varicella and 
pneumococcal vaccines. In addition, developing functional immunization 
registries in all states will be less costly in the long run than 
maintaining the incomplete systems currently in place.
    Injury at work remains a leading cause of death and disability 
among U.S. workers. During the period from 1980 through 1995, at least 
93,338 workers in the United States died as a result of injuries 
suffered on the job, for an average of about 16 deaths per day. The 
Bureau of Labor Statistics (Department of Labor) has identified 5,915 
workplace deaths from acute traumatic injury in 2000. BLS also 
estimates that 5.7 million injuries to workers occurred in 1997 alone; 
while NIOSH estimates that about 3.6 million occupational injuries were 
serious enough to be treated in hospital emergency rooms in 1998. The 
injury prevention and workforce protection initiatives of NIOSH need 
continued support.
    Of the 4 million babies born each year in the United States, 3 
percent are born with one or more birth defects. Birth defects are the 
leading cause of infant mortality, accounting for more than 20 percent 
of all infant deaths. Children with birth defects who survive often 
experience lifelong physical and mental disabilities. An estimated 54 
million people in the United States currently live with a disability, 
and 17 percent of children under the age of 18 have a developmental 
disability. Direct and indirect costs associated with disability exceed 
$300 billion.
    Created by the Children's Health Act of 2000 (Public Law 106-310), 
the National Center on Birth Defects and Developmental Disabilities 
(NCBDDD) at CDC conducts programs to protect and improve the health of 
children and adults by preventing birth defects and developmental 
disabilities; promoting optimal child development and health and 
wellness among children and adults with disabilities. We encourage the 
Subcommittee to provide at least $135 million in fiscal year 2006 
funding for the NCBDDD. This would be a modest increase of $10 million 
and would further surveillance, research and prevention activities 
related to birth defects and developmental disabilities and improve the 
lives of those living with disabilities.
    We also encourage the Subcommittee to provide $10 million for CDC's 
Environmental Public Health Services Branch to revitalize environmental 
public health services at the national, state and local level. As with 
the public health workforce, the environmental health workforce is 
declining. Furthermore, the agencies that carry out these services are 
fragmented and their resources are stretched. These services are the 
backbone of public health and are essential to protecting and ensuring 
the health and well being of the American public from threats 
associated with West Nile virus, terrorism, E. coli and lead in 
drinking water.
    We appreciate the Subcommittee's hard work in advocating for CDC 
programs in a climate of competing priorities. We encourage you to 
consider our request for $8.65 billion for CDC in fiscal year 2006. 
Members of the CDC Coalition are grateful for this opportunity to 
present our views to the Subcommittee.
                                 ______
                                 
    Prepared Statement of the Charcot-Marie-Tooth Association (CMTA)

    I want to thank the Subcommittee for this opportunity to share 
information about Charcot-Marie-Tooth (CMT) disorder and to express 
support for expanded CMT research funded by the National Institutes of 
Health (NIH).

                           BACKGROUND ON CMT

    CMT is the most common inherited neurological disorder, affecting 
approximately 125,000 Americans. The disease affects people across 
their lifespan and is found world wide in all races and ethnic groups. 
Unlike muscular dystrophy, which strikes the muscles, CMT adversely 
affects the nerves that control the muscles. Individuals afflicted with 
CMT slowly lose normal use of their feet and legs and hands and arms as 
nerves to the extremities degenerate. The muscles in the extremities 
weaken due to the loss of stimulation by the affected nerves, and there 
is often a loss of sensory nerve function.
    Even though there are different types of CMT, CMT is largely 
inherited in an autosomal pattern, meaning when one parent has the 
disease (either the father or the mother), there is a 50 percent chance 
it will be passed onto each child. The degree of severity can vary 
greatly from patient to patient, even within the same family. A child 
may or may not be more severely disabled than his or her parent. In 
most cases, CMT does not affect life expectancy; however, in certain 
forms the disease is more severe: debilitating children so that they 
require wheelchairs and even resulting in premature death. There are 
currently no effective treatments--although physical therapy, 
occupational therapy, and moderate physical activity are beneficial.

                         STATUS OF CMT RESEARCH

    CMT was described over 100 years ago; yet, it has only been in the 
last 10 years that rapid advances in our understanding of CMT have 
occurred. We now know there are at least 30 different genetic causes of 
CMT, and the genetic location of many more types are known. 
Identification of the known CMT genes has led to the development of 
diagnostic tests, enabling many people to receive a firm diagnosis and 
evaluate risk to other family members. Despite identifying more genes 
associated with CMT, we are just beginning to understand how the genes, 
when abnormal, cause CMT.
    To elucidate the complexities surrounding CMT, the CMTA funded the 
CMT North American Database, which is housed at Indiana University. 
Simply put, the database is a standardized collection of data about a 
large number of people with all types of CMT that includes detailed 
information about a person's medical, genetic, and family histories. 
Having a central repository of standardized information of CMT patients 
will accelerate the pace of CMT research, by providing detailed 
information about large numbers of uniformly evaluated patients to 
qualified researchers. Information contained in the database should 
provide a more accurate picture of the range of disability caused by 
the various types and sub-types of CMT. The database will also be a 
rich resource to tap when drugs or other CMT treatments become 
available for testing.
    In addition to the database, for several years, CMTA has funded a 
quality research program including the sponsorship of many fellowships 
and national and international meetings. Ongoing studies are 
investigating the molecular basis of various forms of CMT, the 
molecular biology of molecules known to cause CMT, relationships 
between CMT and other neurodegenerative diseases such as ALS, and the 
development of rational clinical therapies to potentially treat CMT. 
The National Institutes of Health (NIH), in particular, the National 
Institute of Neurological Disorders and Stroke (NINDS), has co-funded 
several of these activities.

           CMT RESEARCH AND THE NATIONAL INSTITUTES OF HEALTH

    Despite providing modest support for a handful of successfully 
competed applications, NIH has not launched a coordinated effort to 
stimulate more CMT research opportunities nor invested sufficient 
resources. In fact, according to the NINDS, from fiscal year 2002 to 
fiscal year 2005, funding for CMT research at NINDS declined in real 
terms, even as total NIH dollars and funding of neuropathy research 
increased.
    We are pleased the report that the House and Senate Appropriations 
Subcommittees on Labor, Health and Human Services, and Education 
requested on CMT research at NIH last year has contributed to the 
understanding of relevant trans-NIH activities. Moreover, we are 
encouraged by NIH's announcement that it is beginning to plan a 
workshop on peripheral neuropathies, but believe that such a workshop 
should focus intensively on CMT so that it will result in outcomes 
which will be directly relevant to CMT research and could lead to a 
relevant program announcement or request for applications on CMT, 
specifically.
    We are confident the Subcommittee's continued interest in CMT 
research will help the NIH and CMT field work together to identify 
potential future research opportunities that could be incorporated into 
existing trans-NIH initiatives, such as the Blueprint for 
Neurosciences, or developed from the upcoming scientific workshop into 
a request for applications or program announcement.
    Unlike many other areas of research, CMT did not experience a 
largess of funding during the NIH doubling period. In spite of this 
fact, in recent years, researchers made substantial progress towards 
understanding CMT. Yet, additional advances in the field will be 
hampered without additional resources from the NIH. This support would 
not only benefit CMT. Data from CMT research has the potential to 
translate into direct benefits for research into other 
neurodegenerative disorders, such as ALS and MS, which devastate 
hundreds of thousands of Americans. Therefore, by increasing its 
support for CMT, NIH will also be facilitating research into other 
neurodegenerative diseases.

                        FISCAL YEAR 2006 REQUEST

    CMTA believes the Administration's request for the NIH in fiscal 
year 2006 is inadequate. Providing NIH with less than a one percent 
increase, as proposed, would fund the agency well below the rate of 
biomedical research inflation index (3.5 percent) and limit the 
agency's ability to invest in emerging areas of sciences, such as CMT, 
that are in dire need of an infusion of federal support. We urge the 
Subcommittee to increase funding for the NIH in fiscal year 2006. 
Moreover, we urge the Subcommittee to continue to express an interest 
in CMT and work with NIH to ensure that any workshop on peripheral 
neuropathies is intensively focused on CMT so that it will result in 
outcomes which will be directly relevant to CMT research and could lead 
to a relevant program announcement or request for applications on CMT, 
specifically. We encourage and strongly support any such program 
announcement or request for applications on CMT.
    Once again, I thank the Subcommittee for expressing its interest in 
CMT and for this opportunity to testify.
                                 ______
                                 
      Prepared Statement of the Coalition for American Trauma Care

    The Coalition for American Trauma Care is pleased to provide you 
with its recommendations for fiscal year 2006 appropriations for public 
health programs that support trauma care, trauma care research, and 
injury prevention.
    The Coalition for American Trauma Care is a nonprofit association 
of national health and professional organizations that seeks to improve 
care for the seriously injured patient through improved delivery of 
trauma care services, research and rehabilitation activities. The 
Coalition also supports efforts to prevent injury from occurring.
    Injury is one of the most important public health problems facing 
the United States today. It is the leading cause of death for Americans 
from age 1 through age 44. More than 145,000 people die each year from 
injury, 88,000 from unintentional injury such as car crashes, fires, 
and falls, and 56,000 from violence-related causes. Over 85 children 
and young adults die from injuries in the United States every day 
translating into 30,000 deaths annually. Injury is also the most 
frequent cause of disability. Millions of Americans are non-fatally 
injured each year leaving many temporarily disabled and some 
permanently disabled with severe head, spinal cord, and extremity 
injuries. Because injury so often strikes the young, injury is also the 
leading cause of years of lost work productivity and, at an estimated 
$224 billion in lifetime costs each year, trauma is our nation's most 
costly disease.
    Attention to injury was never more important in the wake of the 
September 11, 2001 attacks. Particularly concerning is our failure, as 
a nation, to fully implement organized systems of trauma care in every 
state and region which numerous studies have demonstrated are essential 
to saving the lives of those who are severely injured. The Health 
Resources and Services Administration's (HRSA) completed analysis of a 
2002 survey of the states that shows only eight states had 
comprehensive trauma systems, 12 states did not have even rudimentary 
elements of a trauma system and the remaining states are were in 
various stages of incomplete development. And yet a new Harris Poll, 
commissioned in November, 2004 to learn about the American public's 
views of and support for trauma systems found that:
  --Almost everyone recognizes the importance of having a trauma system 
        in their state.
  --Large majorities feel that having a trauma system in place is as 
        important as, or more important than, having State police or 
        HAZMAT teams.
  --About two in three Americans would be extremely or very concerned 
        if they learned that the trauma system in their state did not 
        meet recognized standards.
  --Americans are willing to spend their own money to have trauma 
        centers and trauma systems in place in their states.
  --Generally, Americans have high expectations of their states' trauma 
        centers and systems when it comes to handling natural disasters 
        or terrorist attacks.
    Trauma Care Systems.--The Coalition is opposed to the elimination 
of this program in the President's fiscal year 2006 budget request and 
urges you to provide $12 million in fiscal year 2006 for HRSA's Trauma-
EMS systems program. This is the amount provided in Senate authorizing 
legislation (S. 265) adopted unanimously by the Senate HELP Committee 
on February 9. The Trauma-EMS program was funded at $3.0 million in 
fiscal year 2001, and $3.5 million for fiscal year 2002-2005. Fully 80 
percent of the appropriated dollars, as authorized, is provided for 
state grants to further trauma system development. States receive 100 
percent federal funding in the first grant year and must provide a 2:1 
state to federal match in Year 2, and a 3:1 match in Year 3. States may 
do this through in-kind assets. Thus, this seriously under-funded 
program provides both critical federal leadership and leverages scarce 
state resources.
    The program has been making steady progress toward the goal of 
extending and strengthening organized systems of trauma care across the 
nation. In receiving grants from fiscal year 2002-2004 states had to 
assure:
    1. A lead agency for the state trauma system.
    2. Identification of a state-level trauma system manager.
    3. A multidisciplinary statewide trauma stakeholder group.
    4. Completion of the 2002 National Assessment (with fiscal year 
2001 funding).
    5. A statewide trauma system plan.
    After these components were in place (or for those states with 
advanced trauma systems), the program funded additional state-specific 
trauma system projects.
    A follow-up assessment of state progress in trauma system 
development is being planned for fiscal year 2005.
    National Center for Injury Prevention and Control.--The Coalition 
supports $168 million in funding in fiscal year 2006 for the National 
Center for Injury Prevention and Control which is currently funded at 
$138 million. While the Coalition remains a strong supporter of the 
National Center for Injury Prevention and Control, members would like 
to see more balance in support for unintentional injuries. Significant 
increases in the NCIPC in recent years have largely been earmarked for 
violence prevention--an important focus for NCIPC after disturbing 
incidents in public schools around the country. However, unintentional 
injury remains the leading killer of children and young adults and 
NCIPC's efforts to translate what works into communities should receive 
increased funding. These efforts help prevent, for example, the 20,000 
head injuries that occur every year by encouraging the use of bicycle 
helmets, and reduce burn-related injuries through smoke detector 
implementation programs. The Coalition is also disappointed that as the 
funding base for the National Center for Injury Control and Prevention 
has grown, the relative amount of funding for acute care research and 
demonstration has diminished.
    Traumatic Brain Injury (TBI).--Traumatic brain injury is a leading 
cause of trauma-related disability. Brain injury is a silent epidemic 
that compounds every year, but about which still little is known. The 
Coalition is opposed to the proposed elimination of this important 
program in the President's fiscal year 2006 budget request and urges 
you to provide a total of $30 million for the Traumatic Brain Injury 
(TBI) Act, reauthorized as part of the Children's Health Act of 2000 
(Public Law 106-310), as follows: $8.715 million for CDC for 
surveillance--the legislation directs the CDC to build upon its work 
with state registries to collect information to help improve service 
delivery to people who have sustained a TBI and to expand monitoring of 
the incidence and prevalence of TBI to include all age groups and 
individuals in institutional settings. In 2003, the CDC launched the 
first phase of the National Information Center for TBI (NCITBI)--a 
``one call'' national information center that provides persons with 
brain injury and their circles of support toll-free information on 
State-specific resources and linkage to services. The CDC has also been 
directed to monitor the incidence, outcomes and services needs of 
people who sustain injuries, including TBI, during mass casualty 
events. The Coalition also supports $15.193 million for the HRSA TBI 
State Grant Program--this Program was established to improve access to 
health and other services for individuals with TBI and their families 
by awarding competitive grants to States and Territories; and $6 
million for HRSA Protection and Advocacy Services for persons with TBI. 
In addition, the Coalition requests that you include report language to 
ensure that the National Institutes on Neurological Disorders and 
Stroke (NINDS) within NIH increases core funding to $2 million for each 
of its six Centers and that NINDS dedicate $1.0 million for funding a 
new coordinating and administrative network for the six Centers. We 
also request that NINDS dedicate funding to establish a new category of 
training grants to incentivize individuals to pursue careers in TBI 
bench science research. NINDS currently funds six bench science 
research centers at $1.0 million each. These six Centers represent 
groups of renowned basic and clinical physician-scientists working 
collaboratively on translational research programs who have developed 
the clinically-relevant laboratory models that will serve as the 
foundation for future research--it is imperative that we invest in the 
infrastructure that is now in place.
    Children's EMS.--The Coalition is opposed to the proposed 
elimination of this program in the President's fiscal year 2006 budget 
request and urges you to provide $20 million in fiscal year 2006, which 
maintains the fiscal year 2005 funding level. While children currently 
account for up to 30 percent of all emergency department visits and 10 
percent of ambulance runs annually, many facilities lack the 
specialized equipment needed to care for children. Moreover, many 
emergency personnel do not have the necessary education or training to 
provide optimal care to children. In order to assist local communities 
in providing the best emergency care to children the Children's EMS 
program needs to continue and continue at the fiscal year 2005 funding 
level.
    Preventive Health/Health Services Block Grant (PHHS).--The 
Coalition is opposed to the proposed elimination of this program in the 
President's fiscal year 2006 budget supports an fiscal year 2006 
funding level of $132 million, which maintains the same funding level 
as provided in fiscal year 2005. The Coalition rejects the President's 
request to eliminate this program because it is duplicative of other 
activities within the CDC. The PHHS Block Grant provides flexible 
funding to states to allow them to address specific health problems 
identified under the Healthy People 2010 assessment process. The 
funding allows states to take innovative approaches to address 
significant health issues and complements, not duplicates, some of 
CDC's other program activities. In addition, the PHHS Block Grant is 
the largest single source of federal funding for support basic state 
Emergency Medical Services' (EMS) infrastructure--the first line of 
defense against death and disability resulting from severe injury.
    The Coalition for American Trauma Care is disappointed by the 
President's fiscal year 2006 budget which proposes elimination of all 
funding for four programs specifically designed to build infrastructure 
to ensure that trauma and emergency medical services are available and 
appropriate to need: HRSA's Trauma-EMS systems program; HRSA's 
Traumatic Brain Injury program; HRSA's Children's EMS program and CDC's 
Preventive Health and Health Services Block Grant. If these cuts were 
enacted, the results would be devastating for emergency care in the 
United States for everyone and particularly for children and those who 
have suffered head injury. The burden of injury in America has been 
well documented by numerous IOM reports and injury facts speak for 
themselves: injury is the leading cause of death and disability for 
children and adults up to age 44. While much more can and needs to be 
done to prevent injury from occurring at all, we will never be able to 
eliminate it entirely. Cutting these programs will not lessen the 
injury burden in America; on the contrary, it will significantly 
increase the burden of death, disability and direct and indirect health 
care costs. We need to increase our investment in these program areas, 
not reduce our commitment.
    The Coalition greatly appreciates the support the Subcommittee has 
provided to trauma related programs in the past and looks forward to 
working with the Subcommittee in the coming weeks and months.
                                 ______
                                 
         Prepared Statement of the Coalition for Health Funding

    The Coalition for Health Funding is pleased to provide the 
Subcommittee with testimony recommending fiscal year 2006 funding 
levels for the agencies and programs of the U.S. Public Health Service. 
Since 1970, the Coalition's member organizations, representing 40 
million health care professionals, researchers, lay volunteers, 
patients and families, have been advocating for sufficient resources 
for PHS agencies and programs to meet the changing health challenges 
confronting the American people. The Coalition for Health Funding is 
the nation's oldest, most broadly based alliance focused on the breadth 
of discretionary health spending. One of the important principles that 
unites the Coalition's members is that the health needs of the nation's 
population must be addressed by strong, sustained support for a 
continuum of activities that includes biomedical, behavioral and health 
services research; community-based disease prevention and health 
promotion; health care services for vulnerable and medically 
underserved populations; ensuring a safe and effective food and drug 
supply; and education of a health professions workforce in adequate 
numbers to address the breadth of need.
    The Coalition for Health Funding believes the Bush Administration, 
and Congress, are missing an important opportunity to improve the 
health of all Americans by not making a stronger investment in the 
agencies and programs of the U.S. Public Health Service. Federal 
spending for public health is low compared to other health spending, 
amounting to three percent of total health care spending according to 
the Centers for Medicare and Medicaid, and yet an investment in public 
health has the potential to slow unsustainable growth in mandatory 
costs, reduce lost productivity at work, school and home, and 
strengthen every citizen's contribution for a healthy, economically 
strong America. Mounting evidence-based studies 
(www.thecommunityguide.org; www.aspe.hhs.gov/health/prevention/
prevention.pdf; www.modelprograms.samhsa.gov) demonstrating the 
effectiveness of prevention, early intervention, access to basic health 
care services and associated cost-savings support investing in public 
health programs and activities. Instead, over the past two fiscal years 
we have seen an erosion of resources, beginning with the budget phase, 
with flat-funding, or cuts in funding, effected for many programs 
during the Committee phase of the appropriations process followed by 
across-the-board cuts in the omnibus bills for all health programs. The 
President's fiscal year 2006 budget request takes these reductions 
considerably further by proposing to cut funding for the seven major 
public health agencies by $1.1 billion below fiscal year 2005 levels, a 
cut of 2.2 percent as the accompanying table shows.
    The Coalition for Health Funding urges the Subcommittee on Labor, 
Health and Human Services and Education to reject the President's 
proposal to reduce the nation's investment in public health and instead 
join 425 health organizations that, in letter dated February 1, 2005, 
urged the President and Congress to make an investment in public health 
of $3.5 billion over fiscal year 2005 levels. As that letter states:

    ``The health of all Americans is at risk from an unprecedented 
range of threats, including: chronic diseases and disabilities, 
infectious and food borne illnesses, biological and chemical terrorism, 
mental disorders and substance abuse, catastrophic injuries, and a 
shortage of healthcare providers and trained public health workers.
    ``Our nation's public health system will not be able to respond 
adequately to these threats without additional resources for the 
continuum of medical research, prevention, treatment and training 
programs. We urge you to increase discretionary funding for public 
health through the Function 550 budget allocation in fiscal year 2006 
by $3.5 billion. This investment is critical to improving the health, 
safety and security of our nation.''

    The following is a partial list of the Coalition's fiscal year 2006 
recommendations for specific U.S. Public Health Service agencies. The 
Coalition developed these recommendations working with eight other 
health coalitions with a more targeted focus on one agency, or major 
activities within a particular agency. The table that follows provides 
the Coalition's recommendations for all the major public health 
agencies.

                  NATIONAL INSTITUTES OF HEALTH (NIH)

    The Coalition supports $30.1 billion in fiscal year 2006 for the 
National Institutes of Health, a 6 percent increase over the fiscal 
year 2005 funding level, to provide sufficient resources to sustain the 
momentum of the recently completed campaign to double the nation's 
investment in the promising research supported and conducted by the 
NIH. The President's request to provide $28.6 billion, or a .5 percent 
increase over fiscal year 2005, is inadequate to fully reap the 
research opportunities that the doubling campaign have made available. 
NIH is engaging the next generation of biomedical research to integrate 
and aggregate basic research, computational capabilities, and clinical 
evidence into new cures. Transforming America's health for the 21st 
century will require a longstanding commitment from our country and its 
leaders. The pace and intensity of this transformation is critical. 
Health improvements will only be possible if the medical research 
enterprise runs smoothly. Recent discoveries NIH supported research has 
made possible include: lifestyle intervention can reduce the onset of 
Type II diabetes as occurred in 58 percent of those at risk in a recent 
trial; islet cell transplantation has reduced the need for insulin for 
250 individuals with juvenile diabetes; low-cost diuretics are as 
effective as newer, costlier drugs in lowering high blood pressure that 
affects one in four Americans, potentially saving money and enhancing 
compliance; newer antidepressant medications are more targeted to 
specific brain function resulting in fewer side effects and enhanced 
compliance; great advances in understanding the genetic factors in 
Alzheimer's Disease holds promise for treatment for the growing number 
of Americans afflicted with this devastating disease; new vaccines have 
been developed against Haemophilus influenzae type b, pneumococcal 
disease, Hepatitis A and B and a new Ebola vaccine is currently in 
trial.
    Scientific discoveries are the result of a series of incremental 
steps that pave the way for future breakthroughs. This process needs 
sustained support. A funding increase of only .5 percent will delay 
important initiatives leading to earlier, more targeted diagnoses; more 
targeted, effective treatment options; and more comprehensive, cost-
effective prevention strategies.

            CENTERS FOR DISEASE CONTROL AND PREVENTION (CDC)

    The Coalition for Health Funding recommends an overall funding 
level of $8.65 billion for CDC in fiscal year 2006. This amount is $616 
million more than the fiscal year 2005 funding level and $1.1 billion 
more the President's request for fiscal year 2006. The Coalition 
believes this is the amount needed to enable CDC to carry out its vital 
mission of disease prevention and health promotion.
    The Coalition opposes the President's request to cut $130 million 
from State and Local Preparedness grants and shift the funds to the 
Strategic National Stockpile (SNS) to purchase vaccines and terrorism 
countermeasures and fund a new $50 million Mass Casualty Initiative. 
Any SNS purchases and new federal terrorism initiatives, if deemed 
warranted, should be funded from new resources and not at the expense 
of State and Local Preparedness. State and Local health departments are 
in the third year of expanded funding for terrorism preparedness. The 
effect of a 14 percent cut will seriously jeopardize momentum in 
addressing critical capacity needs. Funding should be restored, at 
least, to fiscal year 2005 levels and the commitment to rebuilding the 
nation's neglected public health infrastructure resumed and sustained.
    The Coalition also opposes the proposed elimination of funding for 
the Preventive Health and Health Services Block Grant. This funding 
provides the only source of flexible funding to state health 
departments to help them meet Healthy People 2010 goals. The funding is 
often used in innovative ways which complement, not duplicate, other 
disease-specific categorical programs. It is also the only source of 
funding for many states to monitor well-contamination in poor rural 
areas. And it helps states cope with unexpected challenges such as 
emerging infectious diseases like West Nile Virus and the health 
consequences of disasters. Taken together, the proposed cut in the 
State and Local Bioterrorism grant program coupled with the elimination 
of the Preventive Block Grant seriously undermines funding for building 
State and Local public health capacity, a major Congressional goal 
expressed in legislation the year before (Public Law 106-505) and the 
year after (Public Law 107-188) the attacks of September 11, 2001.
    The Coalition is displeased that most of the rest of the programs 
and activities conducted by the CDC are proposed for flat funding in 
the President's budget. This is especially egregious for chronic 
disease programs at a time when the nation faces an epidemic of obesity 
and the ensuing increase in diabetes, heart disease, kidney disease, 
cancer, arthritis and other costly diseases. There should be a major 
national investment in finding ways to address this problem. The VERB 
program, eliminated in the President's budget, provides a model for 
reaching young adolescents; it should be replicated.
    Similarly, there is insufficient funding provided for infectious 
disease programs, most of which are flat-funded. The United States is 
still only partially prepared for diseases such as West Nile virus and 
pandemic flu, and has not committed funds to combat antimicrobial 
resistance commensurate with the scope and severity this problem 
presents in the United States. There are 40,000 new HIV infections each 
year which means the United States burden of HIV/AIDS is growing, not 
stagnant. The President's budget request does include increases for the 
National Immunization Program (+$50 million), but the Coalition 
supports an increase of $282 million in order to meet the national goal 
of vaccinating 90 percent of children and adults.
    Finally, the Coalition is, overall, deeply disappointed that the 
President's budget request cuts funding for the CDC, the nation's 
leading disease prevention/health promotion agency, by more than 6 
percent, instead of investing in this agency's potential for saving 
health care costs.

          HEALTH RESOURCES AND SERVICES ADMINISTRATION (HRSA)

    The Coalition for Health Funding recommends an overall funding 
level of $7.5 billion for HRSA in fiscal year 2006. This amount is $691 
million, or 10 percent, more than the fiscal year 2005 funding level, 
and is $1.5 billion more than the President's request. This is the 
amount that the Coalition believes is needed to provide adequate 
resources for the important programs that HRSA administers that address 
access to needed medical and health care services for medically 
underserved populations.
    The Coalition is pleased that the President has requested a 
significant 17 percent increase for Community Health Centers (CHC) for 
a total of $2.038 billion. These centers provide basic health care 
services for those who are medically underserved in both rural and 
inner city communities across the nation. With the number of uninsured 
rising, CHCs are more important than ever.
    There are many other areas in the HRSA budget that the President 
proposes to cut deeply that the Coalition opposes. Chief among these is 
the elimination of the Title VII Health Professions Education programs. 
These programs are beginning to document formally what their supporters 
have long known: that they have a solid track record in recruiting and 
training the kind of health professionals that practice in, and stay 
in, medically underserved areas. Graduates of these programs are 3-10 
times more likely to practice in underserved areas and are 2-5 times 
more likely to be minorities. The Title VII programs also have a solid 
track record in training needed health professionals in short supply 
including pharmacists, allied health professionals, dentists, a range 
of public health practitioners, psychologists, and physician 
assistants. These shortages will become worse as increasing numbers of 
the nation's healthcare workforce begin to retire and the babyboom 
generation requires increased care as it ages.
    The Coalition also opposes the elimination of five other programs: 
Community Access Program, an innovative program of coordinated service 
delivery to the uninsured that does not duplicate other available 
programs; the Trauma-EMS program which fosters statewide trauma system 
development to provide appropriate emergency response for seriously 
injured individuals--an important terrorism readiness component; the 
Children's EMS program which builds appropriate emergency response 
capacity for children; the Traumatic Brain Injury program which helps 
brain-injured individuals become successful community participants; the 
universal newborn screening program which ensures that all states 
screen infants for a core set of screening tests for genetic, 
metabolic, hormonal, or functional conditions many of which can be 
treated if detected and disability averted. The Coalition also opposes 
the $115 million cut to a number of rural programs, and the $101 
million cut to the Children's Hospitals Graduate Medical Education 
program.
    Also disturbing is the proposed level funding for many other 
programs. This includes the Nursing Education programs despite 
considerable documentation of the nursing shortage crisis. It also 
includes the Ryan White CARE Act programs at a time when the United 
States is experiencing 40,000 new HIV infections per year. The 
President's request for Ryan White programs, when compared to fiscal 
year 2005 levels, provides level funding for all titles except for the 
AIDS Drug Assistance Program which receives a $10 million increase--not 
enough to eliminate waiting lists for the life-saving drugs. The 
Maternal and Child Health Block Grant is a critical safety net program 
for poor women and special needs children. Flat-funding actually cuts 
services at a time when there is an upsurge in the number of families 
needing TANF assistance. Family Planning services, which support 4,600 
clinics across the United States that provide comprehensive services 
including screening for cancer, HIV, and other diseases as well as 
contraception and teen pregnancy prevention, are another critical 
safety net service that needs increased resources.
    Overall, the President proposes to cut existing HRSA programs by 
$838 million, or over 12 percent, at a time when the numbers of 
uninsured individuals and families is rising and they are turning to 
federally funded programs for assistance and care.

       SUBSTANCE ABUSE AND MENTAL HEALTH SERVICES ADMINISTRATION

    The Coalition for Health Funding recommends an overall funding 
level of $3.5 billion for SAMHSA in fiscal year 2006. This amount is 
$262 million, or 8 percent, more than the fiscal year 2005 funding 
level, and $316 million more than the President's budget request, which 
includes a 54 million cut for SAMHSA programs.
    The Coalition is pleased that, for the third year, the President 
requests an increase for substance abuse treatment, although 
substantially less at $25 million than the last two years. However, 
once again, the increase comes at the expense of prevention which is 
slated for a $15 million cut. Substance abuse is a significant and very 
costly national problem involving an estimated 21.6 million Americans--
over 9 percent of the population--and needs investment in both 
treatment and prevention. SAMHSA has developed a set of evidence-based 
model prevention programs that community-based organizations need help 
in implementing. On the treatment side, of the 1 million Americans who 
express a need for substance abuse treatment in a regularly conducted 
household survey, 273,000 (26 percent) report they made an effort to 
obtain treatment, but were unable to do so. Clearly, a stronger 
investment--which the President has championed--needs to be made to 
provide treatment when it is sought.
    The Coalition is very disappointed that the President's budget cuts 
mental health program funding at SAMHSA by $64 million. There is no 
additional investment made in response to the findings and 
recommendations of the President's New Freedom Commission on Mental 
Health, the first such commission in over 25 years. The Commission 
advised the President that youth with mental and emotional problems 
face enormous access barriers and that an alarming 80 percent of youth 
in juvenile detention facilities have mental disorders. Yet the 
President's budget cuts the Jail Diversion program in half and the 
successful Youth Violence Prevention program by $27 million. These cuts 
should not be accepted in the aftermath of the Red Lake school massacre 
in Minnesota.
    The Coalition sincerely appreciates this opportunity to provide its 
fiscal year 2006 funding recommendations to the Subcommittee for the 
agencies and programs of the U.S. Public Health Service. The 
Coalition's recommendations for all of the public health agencies are 
provided in the accompanying table. The Coalition, and its member 
organizations, look forward to working with the Subcommittee in the 
weeks ahead to improve the health of all Americans.

                                                    COALITION FOR HEALTH FUNDING 2006 RECOMMENDATIONS
                                                                  [Dollars in millions]
--------------------------------------------------------------------------------------------------------------------------------------------------------
                                                                                President's    Percent
                                                                                   dollar    President's                      Dolllar         Percent
                                                                   President's    request       request         CHF       difference CHF  difference CHF
                        Agency                           Fiscal      request    fiscal year  fiscal year  recommendation  recommendation  recommendation
                                                        year 2005  fiscal year     2006-        2006-       fiscal year     fiscal year     fiscal year
                                                                       2006     fiscal year  fiscal year       2006         2006-fiscal     2006-fiscal
                                                                                    2005         2005                        year 2005       year 2005
--------------------------------------------------------------------------------------------------------------------------------------------------------
NIH \1\..............................................     $28,444      $28,590        +$146         +0.5       $30,150         +$1,706            +6.0
CDC \2\..............................................       8,034        7,543         -491         -6.1         8,650            +616            +7.7
HRSA \1\.............................................       6,809        5,972         -837        -12.3         7,500            +691           +10.0
SAMHSA \1\...........................................       3,269        3,215          -54         -1.6         3,531            +262            +8.0
AHRQ.................................................         319          319  ...........  ...........           443            +124           +38.0
FDA \1\..............................................       1,450        1,500          +50         +3.4         1,566            +116            +8.0
IHS \1\..............................................       2,985        3,048          +63         +2.1         3,218            +232            +7.8
                                                      --------------------------------------------------------------------------------------------------
      Totals.........................................      51,310       50,187       -1,123         -2.2        55,058          +3,747           +6.8
--------------------------------------------------------------------------------------------------------------------------------------------------------
\1\ Reflects Total Budget Authority.
\2\ Reflects Total Program Level.

                                 ______
                                 
  Prepared Statement of the Crohn's and Colitis Foundation of America

              SUMMARY OF FISCAL YEAR 2006 RECOMMENDATIONS

    (1) A 6 percent increase for the National Institute of Diabetes, 
and Digestive and Kidney Diseases, and the National Institute of 
Allergy and Infectious Diseases and a corresponding increase for 
Inflammatory Bowel Disease Research at both institutes.
    (2) $1.5 Million for the National Inflammatory Bowel Disease 
Epidemiological Program at the Centers for Disease Control and 
Prevention.
    (3) $25 million for CDC's National Colorectal Cancer Screening 
Awareness Program.

                              INTRODUCTION

    Mr. Chairman, thank you very much for the opportunity to present 
the views of the Crohn's and Colitis Foundation of America (CCFA). I am 
Rodger DeRose, President and Chief Executive Officer of CCFA and I am 
honored to represent the people of this country who suffer from Crohn's 
disease and ulcerative colitis.
    Crohn's disease and ulcerative colitis are chronic disorders of the 
gastrointestinal tract which represent a leading cause of morbidity 
from digestive illness. Because they behave similarly, these disorders 
are collectively known as inflammatory bowel disease (IBD). IBD can 
cause severe diarrhea, abdominal pain, fever, and rectal bleeding. 
Moreover, IBD related complications can include; arthritis, 
osteoporosis, anemia, liver disease, and colon cancer. Crohn's disease 
and ulcerative colitis are not fatal, but they can be devastating. We 
do not know their cause, and there is no medical cure.
    CCFA is a non-profit, voluntary organization dedicated to finding a 
cure for Crohn's disease and ulcerative colitis. Throughout its 38-year 
history, CCFA has sponsored basic and clinical research of the highest 
quality. The Foundation also offers a wide range of educational 
programs for patients and healthcare professionals, and provides 
support services to assist people in coping with these chronic 
intestinal diseases.
    We are extremely grateful Mr. Chairman, for your support of IBD 
related programs in the fiscal year 2005 Labor-HHS bill. Your 
leadership is making a tremendous difference in the lives of the 
patients and families that we serve.

                  RECOMMENDATIONS FOR FISCAL YEAR 2005

(1) National Institutes of Health
    CCFA has developed highly successful research partnerships with the 
NIH. We are particularly proud of our longstanding collaborations with 
the National Institute of Diabetes and Digestive and Kidney Diseases 
(NIDDK) which sponsors the majority of IBD research at NIH, and the 
National Institute of Allergy and Infectious Diseases (NIAID).
    In 2001, a team of investigators from NIDDK, CCFA, and the private 
industry announced that they had identified the first gene for Crohn's 
disease. This historic breakthrough opens up exciting new pathways of 
research focused on the development of improved therapies for Crohn's 
disease patients. The research which led to the discovery of the gene 
would not have been possible without the strong support that Congress 
has provided to the NIDDK in recent years.
    Some of the most promising IBD research supported by the NIH has 
focused on translating findings from studies conducted on animal models 
to humans with IBD. These animal models have enabled researchers to 
form the current hypothesis that Crohn's disease and ulcerative colitis 
are caused by a malfunctioning immune system, wherein components of the 
patient's immune system overreact to normal intestinal bacteria. We 
know that people are susceptible to this malfunction because of their 
genetic makeup but further research is necessary to determine which 
bacteria are responsible, how these bacteria interact with the 
intestine's immune system, and which immune system components are 
involved.
    Mr. Chairman, IBD patients and their families are pinning their 
hopes for a better life on medical advancements made through NIH 
sponsored research. For this reason, CCFA recommends a 6 percent 
increase for NIDDK, NIAID, and NIH overall in fiscal year 2006. 
Moreover, CCFA encourages the subcommittee to increase IBD research 
funding within NIDDK and NIAID at the same rate as NIH overall.

(2) Centers for Disease Control and Prevention
            IBD Epidemiology Program
    Mr. Chairman, CCFA estimates that ``up to one million'' people in 
the United States suffer from IBD. Unfortunately, we do not have an 
exact number; due to the complicated nature of those diseases, patients 
may remain undiagnosed or misdiagnosed for several years.
    One of CCFA's main public policy objectives has been the 
establishment of a nationwide IBD epidemiological program in 
partnership with the Centers for Disease Control and Prevention.
    We are extremely grateful for your leadership in providing $750,000 
within CDC's National Center for Chronic Disease Prevention and Health 
Promotion for this much needed project in the fiscal year 2005 Labor-
HHS bill. This program, which was initially funded through private 
support provided to CDC from our Foundation, will further our 
understanding of both the prevalence of IBD in the United States, and 
the demographic characteristics of this unique patient population.
    The cultivation of patient demographic information is critically 
important to our biomedical research efforts given that environmental 
factors are believed to play a major role in the development and 
progression of IBD. If we are able to generate an accurate analysis of 
the geographic makeup of the IBD patient population, it will provide us 
with invaluable clues about the potential causes of IBD.
    CDC, in partnership with our scientific experts, are making 
significant progress on the epidemiology study. Phase one of the study 
has been completed and is being prepared for publication this summer. 
Plans are currently underway to expand the study to other key areas of 
investigation. For fiscal year 2006, CCFA respectfully requests an 
appropriation of $1.5 million for the continuation of the epidemiology 
study within the National Center for Chronic Disease Prevention and 
Health Promotion.
            Colorectal Cancer Prevention
    Finally Mr. Chairman, in addition to coping with either Crohn's 
disease or ulcerative colitis, many IBD patients are at high risk for 
developing colorectal cancer. As you may know, colorectal cancer is the 
third most commonly diagnosed cancer for both men and women in the 
United States and the second leading cause of cancer-related deaths. 
Because people who have suffered from IBD for more than 8 years are 
susceptible to this disease, CCFA has a long history of actively 
promoting the benefits of colorectal cancer screening.
    Although colorectal cancer is almost entirely curable when detected 
early, studies have shown a tremendous need to: (1) inform the public 
about the availability and advisability of screening and (2) educate 
healthcare providers about screening guidelines. CDC's National 
Colorectal Cancer Roundtable is actively working to address these 
challenges by partnering with organizations like CCFA to implement a 
national public awareness campaign emphasizing the importance of 
screening and early detection. Moreover, CDC's ``Screen for Life'' 
awareness campaign is actively promoting the importance of colorectal 
cancer screening via television, radio and print media. CCFA encourages 
the subcommittee to provide CDC with $25 million in fiscal year 2006 to 
support its colorectal cancer prevention activities.
    Once again, Mr. Chairman, thank you for the opportunity to present 
the views of Crohn's and Colitis Foundation of America. We look forward 
to continuing to work with you on these important issues.
                                 ______
                                 
 Prepared Statement of the Developmental Disabilities Research Centers 
                              Association

    Mr. Chairman, on behalf of the Developmental Disabilities Research 
Centers Association (DDRCA), I thank you for this opportunity to share 
with you and your Committee, some of the exciting achievements that are 
happening in the world of developmental disabilities and mental 
retardation research. I am Steven F. Warren, Director of the Kansas 
Mental Retardation and Developmental Disabilities Research Center at 
the University of Kansas and Chair of the Developmental Disabilities 
Research Centers Association. First, let me tell you a little about our 
Association.
    The DDRCA is a national resource that grew out of Congress' mandate 
in 1963 to establish ``centers of excellence'' in mental retardation 
and developmental disabilities research. With funding from the National 
Institute of Child Health and Human Development, our 20 member Centers 
represent the nation's first sustained and integrated effort to prevent 
and treat disabilities through biomedical and behavioral research. 
Today, we are the world's largest concentration of scientific expertise 
in the fields of intellectual and developmental disabilities. We 
believe that our Centers, and the network they form, substantially 
foster communication, innovation, and excellence in research. We work 
collaboratively on a number of research projects, and together with the 
Society for Developmental Pediatrics, produce the quarterly 
publication, ``Mental Retardation and Developmental Disabilities 
Research Reviews.'' Each edition highlights the exciting new research 
on a developmental disability.
    Our research Centers are located within premier research intensive 
universities and often are affiliated with major medical centers which 
provide academic, scientific and often clinical expertise as well as 
institutional support. Collectively, our work represents a 
multidisciplinary, vigorous, and innovative research program directed 
at understanding, treating and eventually substantially reducing the 
incidence of developmental disabilities including mental retardation. 
Additionally, our investigators are engaged in a very important 
mission--training the next generation of scientific investigators and 
clinicians in this area of great importance to America's children and 
families.
    Although a significant portion of the research portfolios at the 
Centers consists of fundamental studies that are directed at 
understanding the biological and behavioral processes in animal models 
and human subjects, each Center directs considerable attention toward 
seeking solutions to practical issues and problems. Our connection to 
the University Centers for Excellence in Developmental Disabilities 
(UCEDDs) is critical in relating our research to practice. The scope of 
the research conducted at the Centers encompasses every known major 
dimension of mental retardation.
    Over the last three decades there has been a huge payoff in the 
federal investment in the Developmental Disabilities Research Centers. 
Many disorders that cause intellectual disabilities can be prevented or 
treated to improve developmental outcomes. The Centers' scientific 
achievements have helped improve quality of life for individuals and 
families affected by disabilities. Among the most exciting aspects of 
this research is the work that is getting close to understanding the 
fundamental biological mechanisms that contribute to many of these 
disabilities with development of interventional strategies. I am 
pleased to share some examples with you.
    Brain Imaging Technologies.--We are all familiar now with magnetic 
resonance imaging or MRI technology. Many of us have experienced this 
technology as it has been used increasingly over the past 12 years as a 
way for physicians to see increasingly higher resolution images of the 
brain as well as to measure local brain activity and metabolism. 
Functional magnetic resonance imaging (fMRI) provides a way to examine 
brain processing during complex behavior such as thinking and reading. 
Signal abnormalities associated with several diseases and syndromes 
that dramatically affect behavior and cognition have been 
characterized, including fragile X syndrome, Rett syndrome, Turner 
syndrome, Tourette syndrome and neurofibromatosis.
    At the Kennedy Krieger Institute (KKI), the Mental Retardation 
Developmental Disability Research Center at Johns Hopkins University in 
Baltimore, MD., they have utilized functional brain imaging to 
establish a link between the lowering of vocabulary in children with 
neurofibromatosis (NF-1) and enlargement of the cerebrum. More detailed 
imaging techniques called spectroscopy imaging was then used to locate 
the specific regions of the brain that linked with the loss of 
vocabulary and cognitive functioning. A similar type of cerebral 
enlargement was discovered in autistic children by investigators at the 
University of North Carolina Mental Retardation Research Center. 
Understanding the processes of increased rates of brain growth will 
help lead researchers to finding preventive measures to stop the 
results of loss of IQ or vocabulary in these children.
    Brain Growth and Development.--We are aware that the brain develops 
complex circuitry both under the guidance of internal genetic cues and 
in response to the brain's interaction with the outside world through 
activity and experiences ranging from simple sensation to complex 
behavioral interaction between the child and others. Developmental 
problems result when genetic errors occur either through the expression 
of an inherited copy of a deleterious gene, through chromosomal 
abnormalities or when environmental factors may modify the expression 
pattern of genes. In addition, the developing brain is particularly 
sensitive to exposure to environmental toxins such as alcohol or lead. 
These insights into brain development provide a foundation for 
prevention through biomedical and behavioral intervention. During the 
initial formation of the brain in the fetus and in early postnatal life 
of the child, new nerve cells are forming and each one must extend fine 
processes that migrate through the brain to their correct targets and 
then they must establish the right connections (synapses) and assemble 
those synapses into the functional networks of communication sites 
whereby each cell in our brain talks to the next and communicates with 
the outside world. Many developmental disorders such as neonatal 
seizures that occur due to the mislocation of the brain's nerve cells 
to abnormal sites (heterotopia) or due to the failure of synapses to 
form their proper structural arrangements through a refinement process 
such as fragile X syndrome, result from the failure of synaptic 
connections to properly form in the developing brain. In order to 
understand a brain that has developed abnormally, leading to mental 
retardation or other developmental disabilities, it is necessary to 
understand the normal processes that guide this development.
    At the Civitan International Research Center and Mental Retardation 
Research Center at the University of Alabama at Birmingham, 
investigators have discovered a new particle that forms in nerve cells 
during their earliest stages of development that brings together all of 
the necessary molecules to allow formation of a newborn synapse. At the 
University of North Carolina Mental Retardation research Center, 
investigators have determined the chemical pathways for regulating the 
migration of newborn neurons' in the developing brain. Several groups 
of investigators have determined how the fragile X gene product protein 
plays a role in the normal refinement of synapses in the normal 
developing brain and the consequences of interference with this 
protein's production in humans with fragile X syndrome and animal 
models. The functional consequences of this abnormal development 
include abnormally strong responses to sensory stimuli as determined by 
investigators from the University of Colorado Mental Retardation/
Developmental Disabilities Research Center. This work is providing the 
scaffolding for designing strategies for specifically targeting early 
molecular events in the formation of the brain that may go awry in 
order to prevent or correct disorders of synaptic development.
    Language and Communication.--Language and communication are key 
aspects in a human's ability to function in society. Researchers now 
know that the first 48 months of life is an optimal period in brain 
development for language acquisition and therefore is a period when 
intervention can have the greatest impact on a child's overall 
communication ability. With this in mind, researchers are asking the 
question, ``Are there linkages between language impairments and various 
developmental disabilities or syndromes?''
    The Kansas Mental Retardation Developmental Disability Research 
Center asked a more specific question. ``Do some children with Specific 
Language Impairment (SLI) and children with some forms of autism share 
a genetic relationship?'' Research conducted in Kansas suggests that 
this may be the case. Children with SLI often show a particular grammar 
deficit, an inability to accurately mark tense in the sentences they 
produce. Research reveals that this deficit may even be inherited. 
Collaboration with researchers at the Shriver Center Mental Retardation 
Research Center in Massachusetts shows that children with autism were 
also found to exhibit this tense-marking deficit. On the other hand, 
collaboration with researchers at the University of Louisville in 
Kentucky demonstrated that children with William's syndrome do not show 
this deficit. Researchers at the University of Texas Health Sciences 
Center in Houston have found that in dyslexic children, remedial 
training is helpful and that this training results in changes in 
patterns of brain activation similar to those seen in proficient 
readers. This work will ultimately lead to better identification and 
effective interventions to limit the disability caused by these 
disorders.
    Early Identification and Intervention.--Researchers are learning 
that early intervention as well as early identification of a problem 
can lead to dramatically different life outcomes for a child and his/
her family. At the Civitan International Research Center at the 
University of Alabama at Birmingham MRRC, investigators have begun 
using a dramatic new training regiment in children with cerebral palsy. 
This therapy termed pediatric constraint induced intensive therapy 
(PCIIT) involves limiting the child's use of the most affected limb 
with intensive training of the other limb over several weeks. Similar 
to its beneficial effect in adults who have experienced stroke, this 
therapy results in improved use of the trained limb. Investigators will 
evaluate whether this therapy in children results in similar massive 
functional reorganization of the brain as occurs in adult stroke 
patients. The Mental Retardation Research Center at the University of 
Washington in Seattle, has devoted a great deal of its research to 
early intervention studies. Behavioral scientists there have enhanced 
the ability to recognize autism in the first two years of life. The new 
neuropsychological and brain-imaging findings in autism indicate that 
the severity observed reflects different underlying neurobiological 
bases that can be readily identified; these findings may now help focus 
early intervention programs. Other investigators in this field have 
identified and characterized the unique peer interaction deficits 
experienced by a vast majority of young children with developmental 
disabilities. Researchers who study early intervention developed a 
methodology to evaluate parent/child interactions using feeding and 
teaching scales, a methodology that has been extremely useful in 
identifying problem areas for children who are at risk. Researchers at 
the Waisman Mental Retardation Research Center at the University of 
Wisconsin in Madison, Wisconsin, have developed a method using gene 
sequencing technology to determine if children suffer from a rare but 
progressive disorder in children that has profound effects on cognitive 
development, Alexander's disease. By comparing their results with gene 
analysis to those obtained with more conventional clinical and fMRI 
analysis, these investigators have determined that a more definitive 
early diagnosis can be made with modern genetic tests. This work is 
contributing to our ability to identify and treat developmental 
disorders earlier and more effectively.
    Genetics.--About 40 to 60 percent of known causes of moderate to 
severe mental retardation have genetic origins. Researchers are working 
on DNA probes designed to identify specific genes, to distinguish 
abnormal genes, and to identify genes responsible for specific 
disabilities such as Duchenne muscular dystrophy. Investigators have 
succeeded in mapping genes responsible for disabilities caused by 
enzyme defects, storage diseases, and other inborn errors of 
metabolism. Researchers have identified genes located on chromosome 21 
known to be associated with Down syndrome and Alzheimer's disease. 
Researchers at the Baylor College of Medicine Mental Retardation 
Research Center in Houston, TX have discovered an X chromosome-linked 
gene that is associated with a large percentage of patients with Rett 
syndrome a neurodevelopmental disorder that primarily affects infant 
girls (the leading cause of mental retardation in girls) causing loss 
of speech, purposeful hand movements, seizures, ataxia and apraxia, 
episodes of apnea (breath holding) and sometimes death. Utilizing a 
mouse model, investigators at Baylor are investigating which genes are 
silenced in Rett and the underlying biological consequences of this 
process on neural development and synaptic function. Mutations in the 
same gene that causes Rett syndrome can also lead to other 
developmental disorders including autism and mild mental retardation as 
well as bipolar disorders and schizophrenia. Researchers at the 
University of Kansas Institute for Child Development have determined 
that children with Prader-Willi syndrome (the most common known form of 
genetically caused obesity) who have a life threatening eating disorder 
also display obsessive compulsive disorder (OCD). Both of these 
disorders may be caused by a gene defect on chromosome 15 causing lack 
of inhibition of brain centers involved with OCD and other brain 
centers that regulate growth hormone.This work is giving investigators 
a rich source of animal models to precisely identify the mechanisms 
whereby genetic defects cause developmental disorders and is providing 
the potential therapeutic targets for correcting the consequences of 
these disorders in humans.
    While we have come a long way over the last 30 years, we still have 
far to go. With knowledge generated by the DDRCs, we will be able to:
  --Use brain imaging and genetic methods to better understand the 
        causes of specific disabilities and design strategies for 
        treatment.
  --Develop new therapies to prevent or reverse some of the symptoms of 
        specific disabilities.
  --Better understand the process of brain cell development and 
        enrichment through studying the interplay of the brain's own 
        chemistry with a child's experiences.
  --Prevent many types of developmental disabilities by treating 
        maternal infections and viruses transmitted to their infants.
  --Capitalize on the brain's natural ``plasticity'' to optimize brain 
        development in children born with developmental disabilities 
        through early intervention or by extending the period of brain 
        development.
  --Design learning environments so all children have improved academic 
        outcomes, including those with learning and intellectual 
        disabilities.
  --Determine which child with a disability will respond best to which 
        speech or communication learning approach.
  --Develop culturally competent psychological and medical assessment 
        and treatment procedures for children born into minority 
        families.
  --Prevent and treat atypical behavior among children and adults with 
        disabilities who are especially prone to such difficulties, 
        such as children with autism, fragile X syndrome, or Rett's 
        syndrome.
  --Assist families in preparing their adult sons and daughters with 
        disabilities for successful lives of their own and prepare 
        older people with developmental disabilities for coping with 
        the normal process of aging.
    To address our concerns, we respectfully ask the Committee to 
increase NIH funding to $30.067 billion for fiscal year 2006. 
Additionally, we ask that you increase funding for NICHD to the level 
of $1.34 billion for fiscal year 2006.
    Again, I thank you Mr. Chairman for taking time to learn about the 
DDRC network and the scope of work being conducted at these Centers 
across the nation. Together we believe that we are making strong 
headway in finding solutions to the many diseases and disabilities, 
which affect the children and adults of our society. With your 
continued support, and that of the Subcommittee, we can make great 
strides into the future.
                                 ______
                                 
     Prepared Statement of the Digestive Disease National Coalition

              SUMMARY OF FISCAL YEAR 2006 RECOMMENDATIONS

  --Provide increased funding for the National Institutes of Health 
        (NIH) at 6 percent for fiscal year 2006. Increase funding for 
        the National Cancer Institute (NCI), the National Institute of 
        Diabetes and Digestive and Kidney Diseases (NIDDK) and the 
        National Institute of Allergy and Infectious Diseases by 6 
        percent.
  --Continue focus on digestive disease research and education at NIH, 
        including the areas of Inflammatory Bowel Disease (IBD), 
        Hepatitis and other liver diseases, Irritable Bowel Syndrome 
        (IBS), Colorectal Cancer, Endoscopic Research, Pancreatic 
        Cancer, Celiac Disease, and Hemochromatosis.
  --$30 million for the Centers for Disease Control and Prevention's 
        (CDC) Hepatitis Prevention and Control activities.
  --$25 million for the Center for Disease Control and Prevention's 
        (CDC) Colorectal Cancer Screening and Prevention Program.
    Chairman Specter, thank you for the opportunity to again submit 
testimony to the Subcommittee. Founded in 1978, the Digestive Disease 
National Coalition (DDNC) is a voluntary health organization comprised 
of 27 professional societies and patient organizations concerned with 
the many diseases of the digestive tract. The Coalition has as its goal 
a desire to improve the health and the quality of life of the millions 
of Americans suffering from both acute and chronic digestive diseases.
    The DDNC promotes a strong federal investment in digestive disease 
research, patient care, disease prevention, and public awareness. The 
DDNC is a broad coalition of groups representing disorders such as 
Inflammatory Bowel Disease (IBD), Hepatitis and other liver diseases, 
Irritable Bowel Syndrome (IBS), Pancreatic Cancer, Ulcers, Pediatric 
and Adult Gastroesophageal Reflux Disease, Colorectal Cancer, Celiac 
Disease, and Hemochromatosis.
    Mr. Chairman, the social and economic impact of digestive disease 
is enormous and difficult to grasp. Digestive disorders afflict 
approximately 65 million Americans. This results in 50 million visits 
to physicians, over 10 million hospitalizations, collectively 230 
million days of restricted activity. The total cost associated with 
digestive diseases has been conservatively estimated at $60 billion a 
year.
    The DDNC would like to thank the subcommittee for its past support 
of digestive disease research and prevention programs at the National 
Institutes of Health (NIH) and the Centers for Disease Control and 
Prevention (CDC). With respect to the coming fiscal year the DDNC is 
recommending an increase of 6 percent ($1.7 billion) to $30.1 billion 
for the National Institutes of Health (NIH) and all of its Institutes.
    Specifically the DDNC recommends:
  --$5.1 billion for the National Cancer Institute (NCI).
  --$1.9 million for the National Institute of Diabetes and Digestive 
        and Kidney Disease (NIDDK).
  --$4.66 billion for the National Institute of Allergy and Infectious 
        Diseases (NIAID).
    We at the DDNC respectfully request that any increase for NIH does 
not come at the expense of other Public Health Service agencies.
    With the completed and the challenging budgetary constraints the 
Subcommittee currently operates under, the DDNC would like to highlight 
the research being accomplished by NIDDK which warrants the increase 
for NIH.

                       INFLAMMATORY BOWEL DISEASE

    In the United States today about 1 million people suffer from 
Crohn's disease and ulcerative colitis, collectively known as 
Inflammatory Bowel Disease (IBD). These are serious diseases that 
affect the gastrointestinal tract causing bleeding, diarrhea, abdominal 
pain, and fever. Complications arising from IBD can include anemia, 
ulcers of the skin, eye disease, colon cancer, liver disease, 
arthritis, and osteoporosis. Crohn's disease and ulcerative colitis are 
not usually fatal but can be devastating. The cause of IBD is still 
unknown, but research has led to great breakthroughs in therapy.
    In recent years researchers have made significant progress in the 
fight against IBD. In 1998, the FDA approved the first drug ever 
specifically to fight Crohn's disease, a remarkable milestone. The DDNC 
encourages the subcommittee to continue its support of IBD research at 
NIDDK and NIAID at a level commensurate with the overall increase for 
each institute. The DDNC would like to applaud the NIDDK for its strong 
commitment to IBD research through the Inflammatory Bowel Disease 
Genetics Research Consortium. The DDNC urges the Consortium will 
continue its work in IBD research. Given the recent advancements in 
treatment for these diseases and the increased risk that IBD patients 
have for developing colorectal cancer, the DDNC strongly believes that 
generating improved epidemiological information on the IBD population 
is essential if we are to provide patients with the best possible care. 
Therefore the DDNC and its member organization the Crohn's and Colitis 
Foundation of America encourage the CDC to initiate a nationwide IBD 
surveillance and epidemiological program in fiscal year 2006.

                HEPATITIS C: A LOOMING THREAT TO HEALTH

    It is estimated that there are over 4 million Americans who have 
been infected with Hepatitis C of which over 2.7 million remain 
chronically infected. About 10,000 die each year and the Centers for 
Disease Control and Prevention (CDC) estimates that the death rate will 
more than triple by 2010 unless there is additional research, 
education, and more effective treatments and public health 
interventions. Hepatitis C infection is the largest single cause for 
liver transplantation and one of the principal causes of liver cancer 
and cirrhosis. There is currently no vaccine for hepatitis C, and 
treatment has limited success, making the infection among the most 
costly diseases in terms of health care costs, lost wages, and reduced 
productivity. Patients who are older at the time of infection, those 
who continually ingest alcohol, and those co-infected with HIV 
demonstrate accelerated progression to more advanced liver disease.
    The DDNC applauds all the work NIH and CDC have accomplished over 
the past year in the areas of hepatitis and liver disease. The DDNC 
urges that funding be focused on expanding the capability of state 
health departments, particularly to enhance resources available to the 
hepatitis C state coordinators. The DDNC also urges that CDC increase 
the number of cooperative agreements with coalition partners to develop 
and distribute health, education, communication and training materials 
about prevention, diagnosis and medical management for hepatitis A, B, 
and C.
    The DDNC supports $30 million for the CDC's Hepatitis Prevention 
and Control activities. The hepatitis division at CDC supports the 
hepatitis C prevention strategy and other cooperative nationwide 
activities aimed at prevention and awareness of hepatitis A, B, and C. 
The DDNC also urges the CDC's leadership and support for the National 
Viral Hepatitis Roundtable to establish a comprehensive approach among 
all stakeholders for viral hepatitis prevention, education, strategic 
coordination, and advocacy.

                      COLORECTAL CANCER PREVENTION

    Colorectal cancer is the third most commonly diagnosed cancer for 
both men and woman in the United States and the second leading cause of 
cancer-related deaths. Colorectal cancer affects men and women equally. 
Although colorectal cancer is preventable and curable when polyps are 
detected early, a General Accounting Office report issued in March 2000 
documented that less than 10 percent of Medicare beneficiaries have 
been screened for colorectal cancer. This report revealed a tremendous 
need to inform the public about the availability of screening and 
educate health care providers about colorectal cancer screening 
guidelines. In 2003, the New York City Department of Health has 
recommended colonoscopy for everyone over age 50 to prevent colorectal 
cancer.
    The DDNC recommends a funding level of $25 million for the CDC's 
Colorectal Cancer Screening and Prevention Program. This important 
program supports enhanced colorectal screening and public awareness 
activities throughout the United States. The DDNC also supports the 
continued development of the CDC-supported National Colorectal Cancer 
Roundtable, which provides a forum among organizations concerned with 
colorectal cancer to develop and implement consistent prevention, 
screening, and awareness strategies.

                           PANCREATIC CANCER

    In 2002, an estimated 28,300 people in the United States were found 
to have pancreatic cancer and approximately 28,200 died from the 
disease. Pancreatic cancer is the fifth leading cause of cancer death 
in men and women. Only 2 out of 10 patients will live 1 year after the 
cancer is found and only a very few will survive after 5 years. 
Although we do not know exactly what causes pancreatic cancer, several 
risk factors linked to the disease have been identified:
    (1) Age: Most people are over 60 years old when the cancer is 
found;
    (2) Sex: Men have pancreatic cancer more often than women
    (3) Race: African Americans are more likely to develop pancreatic 
cancer than are white or Asian Americans
    (4) Smoking
    (5) Diet: Increased red meats and fats
    (6) Diabetes
    The National Cancer Institute (NCI) has established a Pancreatic 
Cancer Progress Review Group charged with developing a detailed 
research agenda for the disease. The DDNC encourages the Subcommittee 
to provide an increase for pancreatic cancer research at a level 
commensurate with the overall percentage increase for NCI and NIDDK.

                     IRRITABLE BOWEL SYNDROME (IBS)

    IBS is a disorder that affects an estimated 35 million Americans. 
The medical community has been slow in recognizing IBS as a legitimate 
disease and the burden of illness associated with it. Patients often 
see several doctors before they are given an accurate diagnosis. Once a 
diagnosis of IBS is made, medical treatment is limited because the 
medical community still does not understand the pathophysiology of the 
underlying conditions.
    Living with IBS is a challenge, patients face a life of learning to 
manage a chronic illness that is accompanied by pain and unrelenting 
gastrointestinal symptoms. Trying to learn how to manage the symptoms 
is not easy. There is a loss of spontaneity when symptoms may intrude 
at any time. IBS is an unpredictable and fickle disease. A patient can 
wake up in the morning feeling fine and within a short time encounter 
abdominal cramping to the point of being doubled over in pain and 
unable to function.
    The unpredictable bowel symptoms may make it next to impossible to 
leave your home. It is difficult to ease the pain than may repeatedly 
occur periodically throughout the day. A patient can become reluctant 
to eat for fear that just eating a meal will trigger symptoms all over 
again. IBS has a broad and significant impact on a person's quality of 
life. It strikes individuals from all walks of life and results in a 
significant toll of human suffering and disability.
    While there is much we don't understand about the causes and 
treatment of IBS, we do know that IBS is a chronic complex of systems 
affecting as many as 1 in 5 adults. In addition:
    (1) It is reported more by women than men
    (2) It is the most common gastrointestinal diagnosis among 
gastroenterology practices in the United States
    (3) It is a leading cause of worker absenteeism in the United 
States
    (4) It costs the U.S. Health Care System an estimated $8 billion 
annually.
    Mr. Chairman, much more can still be done to address the needs of 
the nearly 35 million Americans suffering from irritable bowel syndrome 
and other functional gastrointestinal disorders.

                             CELIAC DISEASE

    Celiac Disease is a life-long condition in which the body develops 
an allergy to gluten, a protein found in wheat, barley, and rye, which 
can result in damage to the small intestine. Celiac disease affects as 
many as two million Americans. Onset of the disease can occur at any 
age. The common symptoms of Celiac Disease include fatigue, anemia, 
chronic diarrhea or constipation, weight loss, and bone pain. The only 
treatment for celiac disease is strict adherence to a gluten-free diet. 
Undiagnosed and untreated celiac disease can lead to other disorders 
such as osteoporosis, infertility, neurological conditions, and in rare 
cases cancer. Persons with Celiac Disease often have other associated 
autoimmune disorders as well.

                      DIGESTIVE DISEASE COMMISSION

    In 1976, Congress enacted Public Law 94-562, which created a 
National Commission on Digestive Diseases. The Commission was charged 
with assessing the state of digestive diseases in the United States, 
identifying areas in which improvement in the management of digestive 
diseases can be accomplished and to create a long-range plan to 
recommend resources to effectively deal with such diseases. The 
Commission's subsequent report in 1979 laid the groundwork for 
significant progress in the area of digestive disease research.
    After almost 25 years, however, the burden of digestive diseases 
among the U.S. population remains substantial. The DDNC, therefore, 
calls upon Congress to establish a contemporary Digestive Diseases 
Commission to address the numerous digestive disorders that remain in 
today's diverse population.
    The Commission should be comprised of the nation's leading non-
governmental scientists, physicians, and health professionals, 
including practicing clinical gastroenterologists and researchers 
studying in the field of digestive diseases. Congress should charge the 
Commission with the following:
    (1) Conducting a comprehensive study of the present state of 
knowledge of the incidence, duration, and morbidity of, and mortality 
rates resulting from, digestive diseases and of the social and economic 
impact of such diseases;
    (2) Evaluating the public and private facilities and resources 
(including trained personnel and research activities) for the 
diagnosis, prevention, and treatment of, and research in, such 
diseases; and
    (3) Identifying programs (including biological, behavioral, 
nutritional, environmental, and social programs) in which, and the 
means by which, improvement in the management of digestive diseases can 
be accomplished.
    The Commission also should develop and recommend a long-range plan 
for the use and organization of national resources to effectively deal 
with digestive diseases, related nutritional disorders and basic 
biological processes and mechanisms in nutrition which are related to 
digestive diseases. Finally, the Commission should recommend for each 
of the Institutes of the NIH whose activities are to be affected by the 
long-range plan estimates of the expenditures needed to carry out each 
Institute's part of the overall program.

                               CONCLUSION

    The DDNC understand the challenging budgetary constraints and times 
we live in that is subcommittee is operating under, yet we hope you 
will carefully consider the tremendous benefits to be gained by 
supporting a strong research and education program at NIH and CDC. 
Millions of Americans are pinning their hopes for a better life, or 
even life itself, on digestive disease research conducted through the 
National Institutes of Health.
    Mr. Chairman, on behalf of the millions of digestive disease 
sufferers, we appreciate your consideration of the views of the 
Digestive Disease National Coalition. We look forward to working with 
you and your staff.

                  DIGESTIVE DISEASE NATIONAL COALITION

    The Digestive Disease National Coalition was founded 25 years ago. 
Since its inception, the goals of the coalition have remained the same: 
to work cooperatively to improve access to and the quality of digestive 
disease health care in order to promote the best possible medical 
outcome and quality of life for current and future patients with 
digestive diseases.
                                 ______
                                 
           Prepared Statement of the Doris Day Animal League

    The Doris Day Animal League represents 350,000 members and 
supporters nationwide who support a strong commitment by the federal 
government to research, development, standardization, validation and 
acceptance of non-animal and other alternative test methods. We are 
also submitting our testimony on behalf of People for the Ethical 
Treatment of Animals and the Animal Welfare Institute and their 800,000 
members and supporters. Thank you for the opportunity to present 
testimony relevant to the fiscal year 2006 budget request for the 
National Institute of Environmental Health Sciences for the Center for 
the Evaluation of Alternative Toxicological Test Methods (NICEATM) for 
the Interagency Coordinating Committee for the Validation of 
Alternative Test Methods (ICCVAM) activities for fiscal year 2006.
    In 2000, the passage of the ICCVAM Authorization Act into Public 
Law 106-545, created a new paradigm for the field of toxicology. It 
requires federal regulatory agencies to ensure that new and revised 
animal and alternative test methods be scientifically validated prior 
to recommending or requiring use by industry. An internationally agreed 
upon definition of validation is supported by the 15 federal regulatory 
and research agencies that compose the Interagency Coordinating 
Committee for the Validation of Alternative Methods (ICCVAM), including 
the EPA. The definition is: ``the process by which the reliability and 
relevance of a procedure are established for a specific use.''

                         FUNCTION OF THE ICCVAM

    The ICCVAM performs an invaluable function for regulatory agencies, 
industry, public health and animal protection organizations by 
assessing the validation of new, revised and alternative toxicological 
test methods that have interagency application. After appropriate 
independent peer review of the test method, the ICCVAM recommends the 
test to the federal regulatory agencies that regulated the particular 
endpoint the test measures. In turn, the federal agencies maintain 
their authority to incorporate the validated test methods as 
appropriate for the agencies' regulatory mandates. This streamlined 
approach to assessment of validation of new, revised and alternative 
test methods has reduced the regulator burden of individual agencies, 
provided a ``one-stop shop'' for industry, animal protection, public 
health and environmental advocates for consideration of methods and set 
uniform criteria for what constitutes a validated test methods. In 
addition, from the perspective of animal protection advocates, ICCVAM 
can served to appropriately assess test methods that can refine, reduce 
and replace the use of animals in toxicological testing. This function 
will provide credibility to the argument that scientifically validated 
alternative test methods, which refine, reduce of replace animals, 
should be expeditiously integrated into federal toxicological 
regulations, requirements and recommendations.

                           HISTORY OF ICCVAM

    The ICCVAM is currently composed of representatives from the 
relevant federal regulatory and research agencies. It was created from 
an initial mandate in the NIH Revitalization Act of 1993 for NIEHS to 
``(a) establish criteria for the validation and regulatory acceptance 
of alternative testing methods, and (b) recommend a process through 
which scientifically validated alternative methods can be accepted for 
regulatory use.'' In 1994, NIEHS established the ad hoc ICCVAM to write 
a report that would recommend criteria and processes for validation and 
regulatory acceptance of toxicological testing methods that would be 
useful to federal agencies and the scientific community. Through a 
series of public meetings, interested stakeholders and agency 
representatives from all 14 regulatory and research agencies, developed 
the NIH Publication No. 97-3981, ``Validation and Regulatory Acceptance 
of Toxicological Test Methods.'' This report, and subsequent revisions, 
has become the sound science guide for consideration of new, revised 
and alternative test methods by the federal agencies and interested 
stakeholders.
    After publication of the report, the ad hoc ICCVAM moved to 
standing status under the NIEHS' NICEATM. Representatives from federal 
regulatory and research agencies and their programs have continued to 
meet, with advice from the NICEATM's Advisory Committee and independent 
peer review committees, to assess the validation of new, revised and 
alternative toxicological methods. Since then, several methods have 
undergone rigorous assessment and are deemed scientifically valid and 
acceptable. In addition, the ICCVAM is working to streamline assessment 
of methods from the European Union (EU) that have already been 
validated for use within the EU. The open public comment process, input 
by interested stakeholders and the continued commitment by the federal 
agencies has led to ICCVAM's success. It has resulted in a more 
coordinated review process for rigorous scientific assessment of the 
validation of new, revised and alternative test methods.

                       REQUEST FOR APPROPRIATIONS

    On December 19, 2000, the ``ICCVAM Authorization Act'' which makes 
the entity a permanent standing committee, was signed into Public Law 
No. 106-545. For several years, the NIEHS has provided between $1 and 
$2.6 million per fiscal year to the NICEATM for ICCVAM's activities. In 
order to ensure that federal regulatory agencies and their stakeholders 
benefit from the work of the ICCVAM, it is important to fund it at an 
appropriate level. I respectfully urge the Subcommittee to support 
increasing appropriations from within NIEHS' existing budget request 
for NICEATM for ICCVAM's activities to $3.6 million for fiscal year 
2006. This appropriation request includes all FTEs, funding for 
independent peer review assessment of test methods and meetings of the 
ICCVAM and other activities as deemed appropriate by the Director of 
the NIEHS.

                 REQUEST FOR COMMITTEE REPORT LANGUAGE

    The NIEHS should support the NICEATM/ICCVAM in creating a five-year 
roadmap for assertively setting goals to prioritize ending the use of 
antiquated animal tests for specific endpoints. While the stream of 
methods forwarded to the ICCVAM for assessment has remained relatively 
steady, it is imperative that the ICCVAM take a more proactive role in 
isolating areas where new methods development is on the verge of 
replacing animal tests. These areas should form a collective call by 
the federal agencies that compose ICCVAM to fund any necessary 
additional research, development, validation and validation assessment 
that is required to eliminate the animal methods. We also strongly urge 
the NICEATM/ICCVAM to closely coordinate research, development and 
validation efforts with its European counterpart, the European Centre 
for the Validation of Alternative Methods (ECVAM) to ensure the best 
use of available funds and sound science. This coordination should also 
reflect a willingness by the federal agencies comprising ICCVAM to more 
readily accept validated test methods proposed by the ECVAM to ensure 
industry has a uniform approach to worldwide chemical regulation.
    We also respectfully request the Subcommittee consider the 
following report language for the Senate Labor, Health and Human 
Services, Education and Related Agencies Appropriations bill:

    ``In order for the Interagency Coordinating Committee for the 
Validation of Alternative Methods (ICCVAM) to carry out its 
responsibilities under the ICCVAM Authorization Act of 2000, the 
Committee strongly urges the National Institute of Environmental Health 
Sciences (NIEHS) to strengthen the resources provided to ICCVAM for 
methods validation reviews in fiscal year 2006. ICCVAM and NIEHS 
activities must include up-front validation study design, execution and 
review to ensure that new and revised test methods, non-animal test 
methods, and alternative test methods (such as QSARs, mechanistic 
screens, high throughput assays, and toxicogenomics) are deemed 
scientifically valid before they are recommended or adopted for use by 
federal agencies or used in implementing the National Toxicology 
Program's (NTP) Road Map and Vision for NTP's toxicology program in the 
21st century.''

    Thank you for the opportunity to submit this request on behalf of 
our more than 1.1 million members and supporters.
                                 ______
                                 
     Prepared Statement of the Dystonia Medical Research Foundation

              SUMMARY OF FISCAL YEAR 2006 RECOMMENDATIONS

    Provide increased funding for the National Institute of Health at 6 
percent for fiscal year 2006. Increase funding for the National 
Institute of Neurological Disorders and Stroke (NINDS), the National 
Institute of Deafness and other Communication Disorders (NIDCD), and 
the National Eye Institute (NEI) by 6 percent.

                FISCAL YEAR 2006 RECOMMENDATIONS FOR NIH

  --NIH: $30.1 billion
  --NINDS: $1.63 billion
  --NEI: $709 million
  --NIDCD: $417.6 million
    Continue to accelerate funding for intramural and extramural 
dystonia research at NINDS.
    Provide funding for NINDS to conduct an epidemiological study and 
to increase public and professional awareness of dystonia.
    Continue to expand NIDCD's intramural and extramural research on 
dysphonia.
    Continue to expand NEI's intramural and extramural research on 
dystonia.
    Chairman Specter, thank you for the opportunity to submit testimony 
to the Subcommittee on behalf of the Dystonia Medical Research 
Foundation (DMRF). Dystonia has affected the lives of many Americans 
and we are thankful to be able to provide for you our recommendations 
for fiscal year 2006 federal funding with regards to dystonia research.
    Dystonia is a neurological disorder characterized by powerful and 
painful involuntary muscle spasms that causes the body to twist, 
repetitive jerking movements, and sustained postural deformities. There 
are several different variations of dystonia, including: focal 
dystonias which affect specific parts of the body, such as the arms, 
legs, neck, jaw, eyes, vocal cords; and generalized dystonia, affecting 
many parts of the body at the same time. Some forms of dystonia are 
genetic and others are caused by injury or illness. Dystonia does not 
affect a person's consciousness or intellect, but is a chronic and 
progressive movement disorder for which, at this time, there is no 
known cure. The Foundation estimates that some form of dystonia affects 
about 300,000 people in North America.
    Even though there is no known cure for dystonia, there are 
treatments to lessen the severity of the symptoms of the disease such 
as oral medications, botulinum toxin injections, and in some cases 
surgery. Having increased access to these medical therapies is becoming 
an increasing larger issue for the community as a whole.
    In the past few decades, dystonia researchers have made several 
exciting scientific advancements and have been able to rapidly turn 
laboratory and clinical research into diagnostic examinations and 
treatment procedures, directly benefiting those affected. Genetics, in 
particular, is opening up a new understanding into the cause and 
pathophysiology of the disorder. Thus far, 13 dystonia related genes or 
gene loci have been identified. In 1997, the DYT1 gene for childhood 
early onset dystonia was identified, and we now have a genetic test 
available to confirm diagnosis of this particular type of dystonia. 
Most recently, in 2002, the gene for myoclonus dystonia was identified. 
However the community is still without a diagnostic test and 
misdiagnosis still occurs too frequently.
    Deep brain stimulation is a surgical procedure that was originally 
developed to treat Parkinson's disease but is now being applied to 
severe cases of dystonia. Deep brain stimulation has drastically 
improved the lives of dozens of dystonia patients during the past few 
years. Individuals who were previously bedridden by muscle spasms and 
pain are able to walk without assistance, to speak clearly, to dress 
themselves, to get a driver's license, to date, to travel, and to live 
the life of an able-bodied person. Deep brain stimulation is currently 
used primarily to treat severe cases of generalized dystonia but its 
promising role in treating focal dystonias is being explored. Surgical 
interventions are a crucial and active area of dystonia research.

                    RESEARCH, AWARENESS, AND SUPPORT

    Now is an exciting time to be involved in dystonia research and 
awareness. Researchers are becoming more interested in movement 
disorders and dystonia at the National Institutes of Health (NIH), and 
research is yielding promising clues for better understanding and 
management of this disorder.
    One way the Dystonia Medical Research Foundation has advocated for 
more research on dystonia, is by funding ``seed'' grants to 
researchers. Thus far, the Dystonia Foundation has funded over 370 
grants, and 5 fellowships, totaling more than $18 million. Due to our 
advocacy there are a growing number of talented researchers dedicated 
to understanding the biochemistry of dystonia, genetic causes, new 
therapeutics and the necessity of an epidemiology study.
    Another primary goal of the Dystonia Foundation is education of 
both lay and medical audiences. The Foundation conducts regular medical 
workshops and patient symposiums to present, discuss, and disseminate 
comprehensive medical and research data on dystonia. In January 2001, 
NINDS co-sponsored a genetics and animal models meeting, designed to 
involve not only prominent researchers but inviting junior 
investigators to participate in the discussions. Additionally, in 
October 1996, the NIH was one of our co-sponsors for an international 
medical symposium, which featured 60 papers on dystonia and 125 
representatives from 24 countries. The Young Investigators Award 
Program and the Residency Program are in place to entice emerging 
medical professionals into the field of dystonia research and cultivate 
future dystonia experts.
    Since 1995, over 3,000 educational medical videos have been 
distributed to hospitals, medical and nursing schools, and at medical 
conventions. In addition to medical and coping publications, we have a 
children's video to educate families and increase public awareness of 
this devastating disorder in younger populations. Media awareness is 
conducted throughout the year, and especially during Dystonia Awareness 
Week, observed nationwide from October 14 through 20. Local volunteers 
have been successful in securing news stories on dystonia in local 
venues as well as national media shows such as Good Morning America, 
The Oprah Winfrey Show, and Maury Povich. Through his friendship with 
the mother of a dystonia patient, screen star Kirk Cameron has taken an 
interest in promoting dystonia awareness, and the Dystonia Foundation 
is in the process of investigating the possibility of a public service 
announcement and several appearances at fundraising events.
    The Dystonia Foundation has over 200 chapters, support groups, and 
area contacts across North America. In addition, there are 15 
international chairpersons whose mission is to promote awareness, 
children's advocacy, development, extension, Internet resources, 
leadership, medical education, and symposiums. Furthermore, patient 
symposiums are held internationally and regionally to provide the 
latest medical and coping information to dystonia patients and others 
interested in the disorder.

             DYSTONIA AND THE NATIONAL INSTITUTES OF HEALTH

    The Dystonia Medical Research Foundation recommends an increase to 
$30.1 billion or 6 percent for NIH overall, and a 6 percent increase 
for NINDS, and NIDCD. We at DMRF request that this increase for NIH 
does not come at the expense of other Public Health Service agencies.
    We also urge the Subcommittee to recommend that NINDS provide the 
necessary funding for additional extramural research and a large-scale 
dystonia epidemiological study. There is also an imperative need for 
NINDS to increase its efforts to educate the public and medical 
community about dystonia through co-sponsorship of workshops and 
seminars. We also encourage the Subcommittee to support NIDCD in its 
efforts to revamp its strategic planning process by implementing a 
Strategic Planning Group which will help NIDCD as they: consider 
applications for high program priority; develop program announcements 
and requests for applications; and develop new research areas in the 
Intramural Research Program.
    The National Institute of Neurological Disorders and Stroke (NINDS) 
awarded seven grants in fiscal year 2004 for dystonia research in 
response to the Program Announcement, ``Studies into the Causes and 
Mechanisms of Dystonia'' (August 2002). In addition, the National 
Institute on Deafness and Other Communication Disorders (NIDCD) funded 
an eighth study on brainstem systems and their role in spasmodic 
dysphonia.
    DMRF also supports the many intramural researchers studying 
dystonia. Research includes: exploring improved clinical rating scales 
for dystonia, elevations of sensory motor training, utilizing botox as 
a possible treatment for focal hand dystonia, characterization of 
abnormalities in sensory regions of the brain, treatments for spasmodic 
dysphonia, anatomy imaging of the affect of dystonia on brain activity, 
and exploring the link between laryngitis and spasmodic dysphonia. The 
public awareness impact of pianist Leon Fleisher's treatment through 
the NIH intramural research program has had a tremendously positive 
impact.
    NINDS continues to work with dystonia research and voluntary 
disease groups in the community. In January 2004, NINDS sponsored a 
workshop at Emory University on the Pathology of Dystonia, and in 
October 2004, NINDS participated in a workshop to develop a strategic 
plan for a series of studies on the epidemiology of dystonia. NINDS 
also provided funding in September 2004 to a researcher affiliated with 
the Dystonia Medical Research Foundation (DMRF) to provide partial 
support for a multi-year series of workshops focused on evolving areas 
of research that are critical for the development of therapeutics.
    Dystonia is the third most common movement disorder after 
Parkinson's Disease and tremor, and effects many times more people than 
better known disorders such as Huntington's Disease, muscular dystrophy 
and ALS or Lou Gehrig's Disease. We ask that NINDS fund dystonia-
specific extramural research at the same level that it supports 
research for other neurological movement disorders.

                               CONCLUSION

    The ultimate goal of the Dystonia Foundation is a cure for 
dystonia. Until that goal is realized, we are hungry for knowledge 
about the nature of dystonia and for more effective treatments with 
fewer side effects. We have amassed many exceptional and diligent 
researchers; who are committed to our goal, and our top priority is 
funding their very important research. But the Foundation cannot do it 
alone. We need federal support though NIH, NINDS, NIDCD and NEI to 
continue to fund quality scientific research and eliminate this 
debilitating disease.
    Combine the thwarting of scientific progress with the decreased 
access to therapies and all the progress of the last few years could be 
wiped away. We ask that you aggressively support medical research, 
specifically for movement disorders and brain research. By doing so, 
you are doing a tremendous service for my family and myself and to the 
hundreds of thousands of people and families affected by dystonia.
    Thank you very much.

                THE DYSTONIA MEDICAL RESEARCH FOUNDATION

    The Dystonia Medical Research Foundation was founded 25 years ago 
and has been a membership-driven organization since 1993. Since its 
inception, the goals of the Foundation have remained the same: to 
advance research for more effective treatments of dystonia and 
ultimately a cure; to promote awareness and education; and support the 
needs and well being of affected individuals and their families.
                                 ______
                                 
   Prepared Statement of the FacioScapuloHumeral Muscular Dystrophy 
               Society, Incorporated (FSH Society, Inc.)

    Mr. Chairman, it is a pleasure to submit this testimony to you 
today.
    My name is Daniel Paul Perez, of Lexington, Massachusetts, and I am 
testifying as President & CEO, of the FacioScapuloHumeral Muscular 
Dystrophy Society (FSH Society, Inc.) and as an individual who has 
lived with facioscapulohumeral muscular dystrophy (FSHD) for nearly 43 
years. FSHD is the third most prevalent form of muscle disease. It 
affects 1/20,000 people. For men, women, and children the major 
consequence of inheriting FSHD is a lifelong progressive and severe 
loss of all skeletal muscles. Most people are familiar with Duchenne 
muscular dystrophy (DMD) that affects boys. What they are not aware of 
is, that in any given moment, there are probably more individuals with 
FSHD alive than with Duchenne MD (14,800 vs. 11,000). Recently, the NIH 
identified significant gaps in FSHD and a preponderance of DMD research 
grants and reported that it only has five (5) active projects on 
facioscapulohumeral muscular dystrophy in its entire NIH wide 
portfolio.
    We have given testimony before the U.S. Congress every year since 
1994. We have submitted 26 written testimonies and 5 oral testimonies 
to the U.S. Senate and U.S. House Appropriations Subcommittees on 
Labor, Health, Human Services and Education and Related Agencies. We 
have had considerable report language written in the appropriations 
budget from the committees directed to the National Institutes of 
Health (NIH) with regard to improving the portfolio at the NIH in FSHD 
in nearly every year that we have come before you. In April 2000, prior 
to the passage of the ``Muscular Dystrophy CARE Act 2001'' law, we 
testified that Congressional directive on FSHD has been and is 
repeatedly ignored by the NIH. Since 2001, we have been working closely 
with the NIH on the MD CARE ACT 2001 law mandated research plan. Prior 
to all of the activity around the MD CARE Act 2001, we noted then that 
the NIH is seriously out of compliance with the previous four years of 
Congressional Directives. Incredibly, today in the calendar year 2005 
heading into the fiscal year 2006 the NIH still is out of compliance 
and has an anemic portfolio on FSHD. Going back in time, in 2000 we 
reported the NIH had not responded to the past and prior years of 
Report Language.
    The Report Language for 2000 has been responded to in an untimely 
manner and mainly ignored. The 2000 Report Language is as follows: 
``The Committee is concerned that NIH has not responded to a previous 
request to develop a plan for enhancing NIH research into 
Facioscapulohumeral (FSH) disease. The Committee urges NIH to promptly 
convene a research planning conference and to establish a comprehensive 
portfolio into the causes, prevention, and treatment of FSH disease 
through all available mechanisms, as appropriate. The Director is 
requested to be prepared to testify on the status of this initiative at 
the fiscal year 2001 appropriations hearing.'' (House Report 3037, p. 
81 for NINDS, p. 97 for NIAMS.) The status of fiscal year 2000 Report 
Language is as follows: FSHD extramural research is almost non-
existent. Intramural research on FSHD is non-existent at NIH.
    The Report Language for 1999 has been ignored and the status of the 
Report language for fiscal year 1999 is not done. The 1999 Report 
Language is as follows: ``The Committee encourages the Institute to 
continue and expand research efforts focused on aiding in the diagnosis 
and treatment of FSHD.'' (House Report, NINDS Section, p. 103), and, 
``The Committee was pleased with the Institute's response to last 
year's request which encouraged NIH to stimulate research in the area 
of facioscapulohumeral disease (FSHD). However, the Committee notes 
that NIAMS has not responded in developing a plan for enhancing FSHD 
research, and has not addressed the question of whether an intramural 
program in this area would be beneficial. Therefore, the Committee 
urges NIH to conduct a research planning conference in the near future 
in order to explore scientific opportunities in FSHD research, both 
intramurally and extramurally.'' (House Report, NIAMS Section, p. 120-
121.) The status of 1999 Report Language is as follows: FSHD extramural 
research is almost non-existent. Intramural research on FSHD is non-
existent at NIH.
    The Report Language for 1998 has been ignored and the status of 
Report language for fiscal year 1998 is not done. The 1998 Report 
Language is as follows: ``The Committee has heard compelling testimony 
about facioscapulohumeral (FSH) disease, which causes progressive and 
severe loss of skeletal muscle. FSHD research includes aspects such as 
molecular genetics, neurological function and muscular dystrophy 
involving multiple NIH Institutes. The Committee encourages NIH to take 
steps to stimulate research in this area and requests NIH to develop a 
plan for enhancing NIH research into FSH disease (FSHD), including an 
assessment of whether an intramural research program in this area would 
be beneficial.'' (House Report, p. 101.) In 2005, the status of 1998 
Report Language is as follows: FSHD extramural research is almost non-
existent. Intramural research on FSHD is non-existent at NIH.
    We have worked hard to be sure that our constituency understands 
and supports the doubling of the NIH budget and have been very 
successful in helping to grow the NIH budget from $10.326 billion to 
$28.649 billion. In the same period, we saw FSHD funding increase by 
about $1.3 million. This year we will spare you the heartache of our 
personal story and the pain and suffering our disease brings in its 
train. This year we simply would like you to ask the NIH ``Where did 
the money that Congress appropriated and further directed through 
appropriations report language go?''
    We formerly request a congressional investigation, hearing or some 
other Congressional action regarding the absolute failure of the NIH to 
increase funding in facioscapulohumeral muscular dystrophy (FSHD). We 
have been testifying and generating report language and laws for a 
dozen years and have done the yeoman's share in building the base for 
FSHD. Despite the specific directions from the Congress in report 
language as shown above and with a public law and a federal advisory 
committee on muscular dystrophy, the NIH has failed to follow through 
on improving FSHD research. Despite our active involvement with the 
NIH, the NIH has made the grant review process very secretive, has 
turned down opportunities to shed light on the grant decision making 
process and still has not responded to congressional letters and 
inquiries on the lack of facioscapulohumeral muscular dystrophy (FSHD) 
research in the NIH portfolio.
    I would like to illustrate what we have done at the FSH Society, 
Inc. to improve the funding and portfolio of muscular dystrophy (MD) 
and FSHD. The FSH Society (Society) has represented the FSHD community 
of researchers and clinicians by the following activities on the Hill, 
in the districts, and at the NIH. The FSH Society was the first on the 
Hill and at the NIH and before Parent Project Duchenne Muscular 
Dystrophy (PPDMD) and MDAUSA for many years since 1993. The Society has 
given nearly three dozen Congressional testimonies, in writing and in 
person, before the committee to support the doubling of the NIH budget 
and to encourage spending on muscular dystrophy. The Society has 
succeeded in achieving nearly a dozen sections of report language in 
appropriations reports. I have served on numerous NIH research and 
planning task forces. The Society has had countless hundreds of 
meetings with the Directors, Staff and program officers of the NIH 
NINDS, NIAMS, NICHD, NHGRI, ORD and the OD. I served on the five year 
long range planning meeting for the NIH NIAMS July 1999. I rewrote the 
MD CARE Act 2001 bills to include all muscular dystrophies, ages and 
genders, and to establish the Muscular Dystrophy Coordinating Committee 
(MDCC) federal advisory committee with public members, and to establish 
five national centers for MD not at the exclusion of the basic 
research, and much more. The Society has contributed to supporting two 
NIH funded FSHD research planning conferences (1997, 2000). I work 
closely and collaboratively with NIH program directors. I serve on the 
MDCC at the request of Secretary Tommy G. Thompson and Dr. Elias 
Zerhouni. I helped write the MDCC NIH research plan submitted to 
Congress in summer 2004. I continually encourage FSHD researchers to 
submit NIH grant applications for R01, R21, R03, P01, U54, K, T, F 
training and mentoring awards and Director's Pioneer Awards. The 
Society has given testimony before the Institute of Medicine (IOM) on 
improving the Center for Scientific Review (CSR) grant review process 
for FSHD. The FSH Society itself has funded $1.1 million in $30,000 a 
year fellowships to more than 2 dozen researchers in 5 years, leading 
to nearly 7 dozen publications in top tier journals. The FSH Society 
helps the NIH FSHD patient registry and existing Wellstone Cooperative 
Research Center's as a volunteer health agency.
    As a grant agency, the FSH Society has world renowned and leading 
clinicians and researchers peer reviewing applications, funding 
research, reviewing progress reports and preliminary data and ideas. We 
know and have comprehension on the quality of applicants and projects 
and data being submitted to you in the NIH grant applications for FSHD 
research. I have first hand knowledge of the research as well as our 
Nobel quality advisors. I can tell you that researchers of Wellstone, 
Nobel, and Howard Hughes stature working on FSHD have had applications 
on FSHD rejected by the NIH. However, their applications on other types 
of muscular dystrophy have been funded by the very same agency.
    Mr. Chairman, as you know, the National Institute of Child Health 
and Human Development (NICHD), the National Institute of Arthritis and 
Musculoskeletal Disorders (NIAMS), the National Institute of 
Neurological Disorders and Stroke (NINDS), and the National Human 
Genome Research Institute (NHGRI) are four of the National Institutes 
of Health (NIH) institutes called upon by the Muscular Dystrophy 
Community Assistance Research and Education Act of 2001 (MD CARE Act 
2001) to develop a research plan for muscular dystrophy (MD) research 
and education conducted through the National Institutes of Health. 
Certainly, other NIH institutes will be called into action where 
appropriate such as NHLBI, NEI, NIA, NIMH, NCRR, FIC, and OD.
    We rewrote the MD CARE Act 2001 bill from the Muscular Dystrophy 
Children's Assistance Research and Education Act 2001, covering only 
the childhood form of`Duchenne MD (DMD), to the Muscular Dystrophy 
Community Assistance Research and Education Act 2001 covering all forms 
of MD. We rewrote the bill to include all forms of muscular dystrophy 
affecting men, women, and girls in addition to boys because it was the 
right thing to do. Oddly, in 2004 Duchenne MD received a commanding 
portion of the muscular dystrophy funding and seven of the other 
muscular dystrophy types have little or no funding from the NIH.
    An analysis was presented at the December 2004 MD CARE Act mandated 
Muscular Dystrophy Coordinating Committee (MDCC) meeting of the 164 
grants in the NIH portfolio for future planning purposes related to the 
five sections of the muscular dystrophy research plan. Subsequent to 
the meeting, I requested the details of the 164 grants used for the 
December 1, 2004 discussion from Dr. John Porter (DHHS NIH NINDS), the 
Executive Secretary of the MDCC. It is has been communicated that this 
compilation was done for planning purposes. From discussions with Dr. 
Porter we understand that this view of grants differs from the muscular 
dystrophy portfolios as presented by the budget and NIH OCPL offices 
regarding the various institutes along coding parameters. The 164 
grants were assembled with a degree of scientific subjectivity and 
based on professional expertise and judgment. The December 2004 MDCC 
meeting yielded an analysis of a subjective grouping of the NIH wide 
164 muscular dystrophy grants. Eight were reported related to FSHD. At 
that time, the NIH identified that 8 out of 164 grants are on FSHD! 
Only eight out of 164 grants are for research on FSHD the third most 
prevalent dystrophy that affects men, women and children!
     The details of the data of the 164 grants as presented at the 
December 1, 2004 MDCC for the grants with funding start dates in 2004 
shows 35 grants funded for the 2004 year to that date. The count by 
dystrophy for calendar year 2004 is: 18 for Duchenne muscular dystrophy 
(DMD), 2 for Limb Girdle muscular dystrophy (LGMD), 1 for Myotonic 
muscular dystrophy (DM), 1 for facioscapulohumeral muscular dystrophy 
(FSHD), 7 for stem cell research, and 6 for other research. To re-
iterate by dystrophy the total grants awarded in 2004 were: 18 for DMD, 
2 for LGMD, 1 for DM, and 1 for FSHD! The most recent year of funding 
data shows that the non-Duchenne muscular dystrophy group is not doing 
well in terms of numbers of grants and funding. We request a hearing 
that focuses on this issue with immediacy and attention to ameliorating 
this unequal growth. Oddly, there is an order of magnitude difference 
between Duchenne muscular dystrophy (DMD) and the entire complement of 
all other dystrophies.
    What has happened in facioscapulohumeral muscular dystrophy (FSHD) 
research in the five years since the MD CARE Act was signed and what 
has happened since the thirteen years since we first started asking NIH 
to invest and build the facioscapulohumeral muscular dystrophy 
portfolio? NIH has rejected nearly four dozen grant applications on 
facioscapulohumeral muscular dystrophy of R03, R21, R01, P01, U54, NIH 
Director Pioneer Award Nominations mechanisms and more. The funding 
track record speaks for itself. To date in fiscal year 2005 the NIH has 
rejected every FSHD application it has received. It is difficult to 
attract investigators to FSHD when there is no money made available for 
them and it becomes a downward spiral to attract new and promising 
investigators.
    Incredibly, the NIH NIAMS, NINDS, NICHD, NHGRI FSHD funding is 
still non existent. Since 2001, the overall NIH wide muscular dystrophy 
budget has increased from $21.0M to $42.2M in fiscal year 2006 
estimated and enacted. Since 2001, the FSHD budget has increased from 
$500,000 to $1.6M in fiscal year 2006 estimated.

           NATIONAL INSTITUTES OF HEALTH (NIH) MUSCULAR DYSTROPHY AND FSHD APPROPRIATIONS HISTORY \1\
                                            [In millions of dollars]
----------------------------------------------------------------------------------------------------------------
                                                Total NIH    NIAMS      NINDS      NICHD      NHGRI     NIH wide
                  Fiscal year                     dollars   dollars    dollars    dollars    dollars    dollars
                                                  on MD      on MD      on MD      on MD      on MD     on FSHD
----------------------------------------------------------------------------------------------------------------
2000..........................................       12.6        4.8        4.9        1.2  .........        0.4
2001..........................................       21.0        9.2        8.2        0.5        0.3        0.5
2002..........................................       27.6       11.1        9.8        0.6        2.3        1.3
2003..........................................       39.1       15.5       13.2        4.5        2.1        1.5
2004..........................................       38.7       15.0       14.8        3.8        0.3        2.2
2005ES........................................       41.0       16.3       13.7        4.8        2.2        1.6
2005EN........................................       42.2       15.2       16.6        5.0        0.3        1.6
2006ES........................................       42.2       15.2       16.7        5.0        0.3        1.6
----------------------------------------------------------------------------------------------------------------
\1\ Source: NIH/OD Budget Office & NIH OCPL.

    NIH NIAMS. The NIAMS is ostensibly the lead institute at the NIH on 
muscular dystrophy. After all of our efforts the NIH National Institute 
of Arthritis and Musculoskeletal Disorders (NIAMS) now has only one 
research contract that it is co-funding with NIH NINDS for FSHD for 
$186,233 per year? Not one single research grant for FSHD, the third 
most prevalent dystrophy! The total muscular dystrophy portfolio ending 
December 15, 2005 was 58 projects, including Wellstone Cooperative 
Research Centers (CRC) components for a total of $14,992,725.
    NIH NINDS. The NINDS is the second largest NIH contributor towards 
muscular dystrophy research funding. The NIH National Institute of 
Neurological Disorders and Stroke (NINDS) now has three research 
grants, one research contract, and one-quarter of a Wellstone CRC for 
FSHD for a total of $1,386,620 in fiscal year 2004. The total muscular 
dystrophy fiscal year 2004 portfolio reported February 1, 2005 was 39 
projects, including Wellstone CRC components for a total of 
$14,756,290.
    NIH NICHD. The NICHD is third largest NIH contributor towards 
muscular dystrophy research funding. The NIH National Institute of 
Child Health and Human Development (NICHD) does not have a single 
research grant or project directly focused or covering FSHD, which is 
the third most prevalent dystrophy that affects both boys and girls. 
The total muscular dystrophy fiscal year 2004 portfolio reported 
December 1, 2004 was 15 projects, including Wellstone CRC components 
for a total of $3,837,633.
    NIH NHGRI. The NHGRI is historically the fourth largest NIH 
contributor towards muscular dystrophy research funding. The NIH 
National Human Genome Research Institute (NHGRI) does not have a single 
research grant or project directly focused or covering FSHD. The total 
muscular dystrophy fiscal year 2004 portfolio reported on December 1, 
2004 was 1 project (Z01-HG000215-02), including Wellstone CRC 
components for a total of $281,396. The project is Hereditary Inclusion 
Body Myopathy (HIBM) and HIBM is not a type of muscular dystrophy.
    Astonishingly, the total NIH wide spending on muscular dystrophy 
decreased from $39.1 million (fiscal year 2003) to $38.7 million 
(fiscal year 2004). Something is wrong with this trend given the 
Appropriations Subcommittee's interest in this area and the efforts of 
the patient and research communities to shore up and improve muscular 
dystrophy research.

                         NATIONAL INSTITUTES OF HEALTH (NIH) APPROPRIATIONS HISTORY \1\
                                              [Dollars in millions]
----------------------------------------------------------------------------------------------------------------
                                                   NIH         MD         MD        FSH        FSHD       FSHD
                  Fiscal year                    overall    research   percent    research   percent    percent
                                                 dollars    dollars     of NIH    dollars     of MD      of NIH
----------------------------------------------------------------------------------------------------------------
2000..........................................    $17,821      $12.6      0.071       $0.4       3.18     0.0022
2001..........................................     20,458       21.0      0.103        0.5       2.38     0.0024
2002..........................................     23,296       27.6      0.118        1.3       4.71     0.0056
2003..........................................     27,067       39.1      0.144        1.5       3.83     0.0055
2004..........................................     27,887       38.7      0.139        2.2       5.67     0.0079
2005E.........................................     28,495       41.0      0.144        1.6       3.90     0.0056
2006E.........................................     28,640       42.2      0.147        1.6       3.79    0.0056
----------------------------------------------------------------------------------------------------------------
\1\ Source: NIH/OD Budget Office & NIH OCPL.

    The NIH NIAMS, NINDS, NICHD, NHGRI the four lead institutes on 
muscular dystrophy reported a combined total of 113 projects on 
muscular dystrophy totaling $33,869,044 in fiscal year 2004. Of that 
total amount facioscapulohumeral muscular dystrophy (FSHD) received 
$1,572,853 for three grants, one contract and one-quarter of a 
Wellstone CRC.
    Looking at the three existing Wellstone Cooperative Research 
Centers (CRCs) the NIH NICHD is spending $1,631,994, the NIH NIAMS is 
spending $1,224,971, and the NIH NINDS is spending $1,462,151. Only 
one-quarter of the Wellstone CRC funded by the NIH NINDS specifically 
works on FSHD. One more Wellstone center is currently in the process of 
being funded and none of the work at the fourth Wellstone pertains to 
FSHD. Of $4,319,116 funded to the first three Wellstone CRCs, only 
$365,538 is directly titled for FSHD. Only 8.46 percent of the total 
Wellstone expenditure is being spent on the third most prevalent form 
of muscular dystrophy that affects both men and women.
    Mr. Chairman, we are troubled by the NIH grant review process used 
for the Wellstone Center applications as NIH uses a review process that 
deviates from its rigorous adherence to stating that it funds projects 
of the highest scientific merit. The Wellstone applications are 
reviewed for scientific merit and then the entire score is adjusted 
upward or downward based on a ``gestalt'' or an impression. The NIH 
NIAMS extramural program director writes that as an ``example, one or 
more of the research projects may have very high scientific merit but 
lack relevance or contribute little to the Center [Wellstone] as a 
whole; conversely, research projects with relatively lower scientific 
merit may provide necessary strengths to the other components of the 
Center, and make a major contribution to the Center as a whole.'' This 
changing of the rules has not worked in the favor of FSHD research and 
in fact quite the opposite in round two of the Wellstone evaluations. 
We ask the committee to hold a hearing to more closely examine if 
scientific quality is abrogated by a more subjective review standard.
    Mr. Chairman, we are asking you to inquire about the abysmal 
performance record in FSHD funding and FSHD oriented Wellstone CRCs by 
the NIH. Last, at the end of the day, we all recognize that simply not 
enough grants are being submitted by the extramural research community 
to the NIH. Note that the NIH has done nothing to date to specifically 
encourage or targeted to draw in FSHD research applications in five or 
six years. For most of fiscal year 2004, there was no active program 
announcement on the street in muscular dystrophy from the NIH giving 
researchers no obvious avenues or handles to submit basic research 
grants. Of course, researchers are not restricted from submitting 
applications and can always submit grants in the absence of a call for 
proposal but most look for a program announcement or call for 
applications as a signal of NIH interest. The NIH is certainly not 
receiving enough grants applications for FSHD, but it also manages to 
reject almost every one of the scarce few being submitted by the top 
FSHD researchers in the world. It can be said that the volunteer health 
agencies and extramural community of researchers have done everything 
in their power to grow the area of research and to promote new 
researchers and research projects. We have been very successful as 
shown above and need the NIH to capitalize on our success and 
investments. The NIH has recognized that there is a systemic problem 
and has even self-identified a significant gap as relates to FSHD, but 
it has not stated what and if anything it intends to do to ameliorate 
the unequal growth and opportunity for muscular dystrophies other than 
Duchenne muscular dystrophy.
    At the December 2004 MD CARE Act mandated Muscular Dystrophy 
Coordinating Committee (MDCC) the staff and Director's of the NIH 
admitted there was a problem in the gap with FSHD research. The follow-
up has been deferred to programmatic staff and the implementation 
details of the pending muscular dystrophy research plan. The NIH did 
not say exactly when it would follow-up on funding new research in 
FSHD. The NIH has a history in FSHD of committing to address this issue 
and never following through. The two prior NIH sponsored research 
planning conferences on FSHD are an example. Only a minor fraction of 
the 2000 NIH planning conference research plan developed by the NIH has 
been implemented. At this point, we are unsure if the lack of FSHD 
research in the NIH portfolio is a problem of miscommunication or 
perhaps a more deliberate and calculated on the part of the NIH.
    We also ask that Congress request an explanation from the program 
staff and Directors of the NIH NIAMS, NHGRI, OD and NICHD for the 
inability to do better in the area of FSHD despite repeated 
Congressional requests. We implore Congress to request the NIH to 
specifically build the research portfolio on FSHD through all available 
means, including re-issuing specific calls for research on FSHD at an 
accelerated rate, to make up for historical and present neglect.
    Mr. Chairman, we trust your judgment on the matter before us. We 
believe the Committee should explore why muscular dystrophy in general 
and FSHD in particular has been left behind in the great rise in 
research support at the NIH. Frankly, we are extremely frustrated that 
amid a huge increase in funding and strong unambiguous expressions of 
Congressional support, the NIH commitment in facioscapulohumeral 
muscular dystrophy (FSHD) is so feeble. Mr. Chairman thanks to your 
extraordinary efforts, consideration and work in this area I have hope 
that we will find solutions and that hope keeps me going.
    Mr. Chairman, again, thank you for providing this opportunity to 
testify before your Subcommittee.
                                 ______
                                 
    Prepared Statement of the Federation of American Societies for 
                          Experimental Biology

                         INTRODUCTION TO FASEB

    The Federation of American Societies for Experimental Biology 
(FASEB) is a coalition of 22 scientific societies who together 
represent more than 66,000 biomedical research scientists. The mission 
of FASEB is to enhance the ability of biomedical and life scientists to 
improve, through their research, the health, well-being and 
productivity of all people.

       FASEB'S RECOMMENDATION FOR NIH FUNDING IN FISCAL YEAR 2006

    As your committee begins deliberations on appropriations for 
agencies under its jurisdiction, FASEB would like to offer its views on 
funding for the National Institutes of Health (NIH). FASEB recommends 
that that the National Institutes of Health receive $30.07 billion in 
fiscal year 2006, an increase of 6 percent over the level for the 
previous fiscal year. This level of funding is consistent with our 
analysis of what is needed to prevent the curtailment of vital research 
programs.

                             NIH'S MISSION

    The National Institutes of Health (NIH) is the single most 
important source of funding that drives advances in basic biomedical 
research and clinical medicine. Over the past 50 years, NIH research 
has transformed the practice of medicine and made significant 
improvements in the long-term health of our citizens. Even greater 
benefits are possible in the next two decades, if we are positioned to 
capitalize on the many profound advances in fundamental science.
    Modern medical research is poised to revolutionize the prevention, 
diagnosis and treatment of disease. These opportunities coincide with 
urgent public health needs. The baby boom generation is graying; 
without more effective strategies against chronic diseases, such as 
osteoporosis, Parkinson's and Alzheimer's diseases, and heart disease, 
the health care needs of this generation will place enormous economic 
and social burdens on their children and our Nation. In addition, new 
and emerging infectious diseases are a constant threat to our society; 
without novel and improved methods for predicting, detecting, 
controlling and preventing emerging and re-emerging diseases, our 
nation will be ill prepared to respond to the major public health 
challenges of the twenty-first century. To meet all of these challenges 
with improvements in patient care depends on continuous scientific 
discovery that will usher in a new age in the practice of medicine.

      NOVEL MEDICAL PRACTICE MADE POSSIBLE BY NIH-FUNDED RESEARCH

    The pace of advancement continues to accelerate such that there are 
new treatments that substantially increase the quality and length of 
life for a large number of Americans. Most of these successes were only 
made possible because of basic research and committed clinical 
development. Below, we have highlighted some major advances in 
prevention and treatment of heart disease, infectious diseases, cancer, 
vaccines, obesity and diabetes, and women's diseases. We point out how 
basic research is benefiting Americans and increasing their longevity 
and quality of life. At the same time, we indicate some of the many 
areas of medicine that provide opportunities for important advances in 
the future.
    Cardiovascular Disease.--Without doubt, one of the most important 
advances in human health for an aging population has been the 
investigation and treatment of cardiovascular disease (CVD). Basic 
research identified the limiting step in cholesterol biosynthesis, and 
this led directly to the development of statins. These wonder drugs 
lower levels of blood lipids, and they are remarkably effective in the 
reduction of coronary events and death from coronary heart disease. 
Without the basic research, drug development for the treatment of 
hypercholesterol would have languished for years.
    Although important progress has been made, there is need to 
understand the causes of CVD, and find new means of prevention. Studies 
published within the past 2 years affirm that CVD is strongly affected 
by inflammation, and that the most reliable early predictors of disease 
are blood proteins that reflect chronic inflammation such as C-reactive 
protein. Further research into the prevention of dangerous inflammatory 
responses promises to substantially reduce the major cause of death in 
Americans.
    Infectious Diseases.--Like HIV/AIDS, Ebola and West Nile virus, 
SARS reminds us that emerging and reemerging infectious diseases are 
constant threats to national and international public health. In 2003, 
SARS rapidly moved across the globe, becoming a worldwide health 
emergency that resulted in quarantines, travel warnings, and mounting 
economic damage. The ability of NIH to marshal its resources to rapidly 
initiate development of diagnostics, therapeutics and vaccines against 
SARS has positioned us well in our quest for tools to detect, treat and 
prevent SARS.
    Cancer.--Using monoclonal antibodies (mAb), scientists have also 
identified the cell surface receptors that characterize many different 
cells of the body. These same mAb can be chemically engineered for use 
as biologic drugs in the treatment of many different diseases. The mAb 
reagent that targets a lymphocyte receptor has become a proven therapy 
for non-Hodgkin's B cell lymphoma; many patients remain disease-free 
for several years after having failed chemotherapy. Based on more 
recent clinical trials, this same drug may also be effective in the 
treatment of several forms of autoimmune disease including rheumatoid 
arthritis. Many other engineered mAb are being tested in clinical 
trials for use as biologic drugs, and again, more research is needed to 
identify new disease targets.
    The latest genetic technologies are also beginning to deliver 
important tools for the treatment of cancer. Recently, NIH-supported 
research has been used to develop technologies where virtually the 
entire genome can be studied on a small chip (DNA microarray). A recent 
example of the promise of this technology comes from the study of 
chronic lymphocytic leukemia (CLL). CLL patients fall into two 
categories: those whose tumors progress slowly and those with highly 
malignant tumors that require aggressive therapy. Microarray analyses 
identified the expression of a single gene that discriminates these 
tumor types with a high degree of accuracy. This has now led to a 
simple blood test to determine tumor prognosis and guide therapy. 
Microarray analyses will be used in the future to analyze each 
individual cancer as a way of guiding highly individualized therapies, 
and this will in turn result in a new generation of highly effective 
treatments.
    Vaccines.--Vaccine research and development proceeds at a rapid 
pace using new tools from a variety of fields. Hemophilus influenza 
type b is one of the leading causes of invasive bacterial infection in 
young children worldwide. The development of a vaccine for this disease 
has dramatically decreased the incidence of pediatric meningitis from 
approximately 20,000 to 200 cases per year in the United States. The 
cost for treating this disease and its complications was $500 million 
annually, whereas the cost of vaccination is presently no more than 
fifty cents per patient. The development of this successful vaccine 
evolved naturally out of NIH-supported research in basic immunology and 
many additional breakthroughs are anticipated. For example, similar 
vaccines are being tested to prevent pneumoccocal and meningococcal 
infections that often result in pneumonia or meningitis.
    New sequencing techniques made possible from the Human Genome 
Project allow the rapid decoding of genomes of bioterrorism threats as 
well as rapidly mutating pathogens. Immunologists have created a 
malaria vaccine that was made possible by genome sequencing of the 
malaria parasite and its mosquito host, and recent results in children 
show that this vaccine can convey a 50 percent decline in infections. 
The genome sequence of each pathogen facilitates the identification of 
virulence factors, which in turn, constitute the best targets for 
vaccination. For example, the creation of a SARS DNA microarray chip, 
available from NIAID, will aid in the rapid development of vaccines 
against this recently identified pathogen. The complementary nature of 
basic and clinical research is no where more apparent than in the 
advantage that vaccine research takes of chemical structures determined 
by x-ray crystallography. The recent discovery of the 3-D structure of 
the anthrax bacterium will speed development of novel antitoxins to 
protect our populace against bioterrorism. Thus, work on the horizon 
promises vaccines that will confer resistance to previously 
uncontrollable infectious agents.
    Obesity and Diabetes.--The obesity epidemic continues to rise. The 
projected health care requirements arising from complications 
associated with excessive weight will substantially expand the costs of 
Medicare and private health insurance in an aging population. In 
response to this crisis, NIH has increased funding in obesity research 
and this has led to an explosion of new information concerning the 
regulation of metabolism and the causes of pathogenesis. For example, 
the 2004 Lasker Prize was shared by two American NIH-funded researchers 
and a Frenchman for their work on nuclear receptors, and in part for 
the role these receptors play in insulin resistance and metabolism of 
fat cells. This work holds great promise for therapeutic intervention 
since nuclear receptors are easily targeted by modified versions of 
steroid hormones. Remarkably, some of the most incisive work has come 
from basic studies using model organisms, such as worms and flies, 
where genetic screens have identified the essential metabolic pathways.
    Over the period of the NIH budget doubling, researchers have 
discovered previously unknown hormones such as Resistin and Gherlin. 
Resistin is a fat-cell derived hormone that, in excess, causes problems 
with carbohydrate metabolism, and this is turn can result in diabetes. 
Gherlin, along with Leptin, has been found to be important in the 
modulation of appetite. In another area of metabolic research, we now 
understand the molecular basis for trans fatty acid and saturated fatty 
acid effects on LDL cholesterol, and this has important implications 
both in weight control and in cardiovascular disease.
    Health care costs more than twice as much for diabetes patients as 
for all other individuals. Eliminating or reducing the health problems 
caused by diabetes could significantly improve the quality of life for 
people with diabetes and their families while at the same time 
potentially reducing national expenditures for health care services and 
increasing productivity in the U.S. economy. These costs will increase 
dramatically if the epidemic is allowed to worsen. Indeed, it was 
recently predicted by the Centers for Disease Control that one out of 
three children born in the United States in the year 2000 will develop 
diabetes in his or her lifetime.
    Obesity affected 44 million Americans as of 2001, an increase of 74 
percent from 1991. Obesity is a major risk factor for diabetes and is 
also associated with cardiovascular disease and cancer. The total cost 
attributable to obesity amounted to $99.2 billion in 1995. 
Approximately $51.7 billion of those dollars were direct medical costs. 
The number of restricted-activity days, bed-days, and work-lost days 
increased substantially between 1988 and 1994, while the number of 
physician visits attributed to obesity increased 88 percent during the 
same period.\1\ The health-related economic cost of obesity to U.S. 
business is substantial, representing approximately 5 percent of total 
medical care costs.\2\
---------------------------------------------------------------------------
    \1\ Obesity Research 1998; 6 (2): 97-106.
    \2\ American Journal of Health Promotion 1998; 13 (2): 120-127.
---------------------------------------------------------------------------
    Women's Health.--Recent work has demonstrated that estrogen and 
related compounds reduce brain damage from stroke in experimental 
animals. With these new findings it is extremely important that support 
for existing and new research to resolve the controversy of safety and 
risks of hormone replacement therapy be continued and increased. Such a 
resolution will have a wide impact on women's health concerns such as 
osteoporosis, stroke, Alzheimer's disease and memory loss.

                        COMPETITIVE PEER REVIEW

    Part of the success of American science derives directly from the 
system for awarding research grants. The majority of NIH funding comes 
in response to investigator-initiated research proposals that are 
evaluated by a committee of experts in each scientific field. Elaborate 
care is taken to ensure that conflicts of interest are minimized and 
each research proposal is evaluated on its merit. Over many years this 
competitive system has promoted the highest quality research, and it is 
a shining example of a program based on ``reward for excellence.'' No 
scientist can afford to rest on his or her previous accomplishments. As 
opposed to the entitlement system of funding found in some other 
countries, the American system rewards productivity, innovation, and 
impact. While FASEB welcomes new ideas to make the system function even 
more efficiently, we support the basic concept of peer review as 
practiced by NIH.

               THE IMPORTANCE OF CONTINUING THE MOMENTUM

    There has never been greater opportunity for advancing biomedical 
science and generating more effective practices for clinical medicine. 
Within our reach are dramatic new breakthroughs that can lessen the 
economic and human costs of disease.
    In response to the massive amounts of new information being 
generated in every field of biomedical science, the NIH has recently 
developed a framework of priorities that NIH as a whole must address in 
order to optimize its entire research portfolio. The NIH Roadmap \3\ 
identifies the most compelling opportunities in three main areas and 
will (1) promote a quantitative understanding of the many 
interconnected networks of molecules that comprise our cells and 
tissues, their interactions, and their regulation; (2) explore new 
organizational models for team science; and (3) foster large-scale 
epidemiological studies and clinical trials to enhance the state of 
medical treatment and move new therapies into practice. Specialized 
core facilities and consortia are being promoted to bring together 
scientists from different disciplines as a way of accelerating 
discovery. FASEB supports the goals and vision of this initiative, 
although we maintain that most novel discovery and innovative research 
will continue to originate from individual investigators. In order to 
maintain our rate of discovery and build the infrastructure outlined in 
the Roadmap, NIH requires adequate support for agency-initiated and 
investigator-initiated projects.
---------------------------------------------------------------------------
    \3\ http://nihroadmap.nih.gov/.
---------------------------------------------------------------------------
    The momentum generated from doubling the NIH budget has energized 
biomedical science at every level. We see new young investigators 
making some of the most important discoveries. Training initiatives 
have encouraged talented students to choose a career in academic 
medicine. These highly talented and motivated individuals spend 10 
years or more after college in graduate school and postdoctoral 
appointments. In 2003, only 16.6 percent of new investigators obtained 
funding within their first 3 years of applying for these critical 
grants, thereby making it very difficult for these young scientists to 
establish their new innovative research programs.
    It is impossible to predict which cures and therapies might be lost 
if funds for medical research are curtailed, but it is certain that 
inconsistent NIH funding sends a chilling message to young scientists 
in training and those just entering the research field. Scientific 
competition will always be intense, but exceptionally talented young 
scientists must be assured that sufficient research funding will be 
available or they will be forced to pursue alternative careers.

                             RECOMMENDATION

    FASEB understands that the fiscal year 2006 budget for 
discretionary spending is projected to be constrained in light of the 
large deficit, the expenditures for defense and homeland security and 
the growth in entitlement obligations. However, FASEB strongly believes 
that the scientific opportunities for progress in medical research have 
never been greater. Therefore, FASEB recommends that the National 
Institutes of Health receive $30.07 billion in fiscal year 2006, an 
increase of 6 percent over the level for the previous fiscal year.
                                 ______
                                 
    Prepared Statement of the Friends of the National Institute of 
                 Environmental Health Sciences (NIEHS)

    The Friends of the National Institute of Environmental Health 
Sciences (NIEHS) group appreciates the opportunity to comment on the 
fiscal year 2006 appropriation for the institute. The Friends of NIEHS 
is a coalition committed to expanding the National Institutes of 
Health's (NIH) environmental health research portfolio through 
increased appropriations for NIEHS. Comprised of over 50 patient, 
healthcare provider, children's health, and industry groups, the 
Friends of NIEHS represents an enormously broad constituency dedicated 
to improving the nation's knowledge about our health and our 
environment.
    Over the last several years Congress has shown a strong commitment 
to health research sponsored by NIH. This financial commitment has 
allowed the nation to dedicate resources to emerging scientific 
opportunities that will lead to beneficial health outcomes for 
Americans. We thank Congress for fulfilling its commitment to double 
the NIH overall budget. However, we remain concerned about how we will 
fund these opportunities in the upcoming years.
    This dilemma is particularly true for the NIEHS. This institute 
plays a critical role in what we know about the relationship between 
our environmental exposures and disease onset. Through the research 
sponsored by this Institute, we know that Parkinson's disease, breast 
cancer, birth defects, miscarriage, delayed or diminished cognitive 
function, infertility, asthma and many other diseases and ailments have 
confirmed environmental triggers. Specifically, NIEHS has played an 
important role in discovering the mechanisms by which DES 
(diethylstilbestrol) causes damage, through its historical and ongoing 
work on DES in the animal model. Continuing research of these 
mechanisms is vital to help determine future health events related to 
DES, such as the possibility of third generation effects in the 
grandchildren of women who took DES during pregnancy. Our expanded 
knowledge, as a result, allows both policy makers and the general 
public to make important decisions about how to reduce toxin exposure 
and reduce the risk of disease and other negative health outcomes.
    As the nation continues to steel itself from terrorist threats, the 
Friends of NIEHS applauds Congress's commitment to bolstering research 
funding in the area of infectious disease as a part of national anti-
bioterrorism effort. The coalition, however, feels that an effort that 
only targets bioterrorism falls short of truly protecting the nation as 
it leaves the public vulnerable to chemical terrorism. Funding is 
critical for future initiatives such as research concerning the 
possible health effects of exposure to low levels of hazardous 
chemicals and the use of an Environmental Medical Unit (EMU), as 
previously supported by Congress and underway in Japan, to examine 
populations affected by toxicant-induced intolerances to determine the 
biomarkers and mechanisms by which to identify individual 
susceptibility so as to avoid placing such individuals in hazardous 
situations.
    In an effort to continue the expansion of this knowledge base, the 
Friends of NIEHS supports a $35 million increase in funding for NIEHS 
over fiscal year 2005 levels, bringing the total appropriation for 
fiscal year 2006 to $680 million. This additional funding will allow 
the Institute to continue current projects and pursue promising 
research in the areas of individual susceptibilities (due to gender, 
age, racial/ethnic backgrounds, etc.), environmental disease triggers 
and technologies (such as toxicogenomics and mouse genomics).
    While there are many competing interests that must be considered in 
the fiscal year 2006 budget, a top priority for Americans is medical 
research that explores the relationship between disease and the 
environment. The members of the Friends of NIEHS respectfully request a 
total of $680 million for fiscal year 2006 for the National Institute 
of Environmental Health Sciences. Thank you for this opportunity to 
discuss the importance of these programs as the Congress configures the 
Labor-HHS fiscal year 2006 budget.
    The Friends of NIEHS respectfully requests Congress to appropriate 
a total of $680 million for fiscal year 2006.
                                 ______
                                 
  Prepared Statement of the Friends of the National Institute on Drug 
                            Abuse Coalition

    Mr. Chairman and Members of the Subcommittee: The Friends of the 
National Institute on Drug Abuse (FoN) a burgeoning coalition of over 
50 organizations, is pleased to provide testimony to support the 
extraordinary work of the NIDA. Although a new coalition, it is 
comprised of organizations representing scientists, health 
professionals, and advocates for preventing and treating substance use 
disorders as well as understanding the causes and public health 
consequences of addiction. Pursuant to clause 2(g)4 of House Rule XI, 
the Coalition does not receive any federal funds.
    Drug abuse and addiction represent a major health crisis in 
America, and create an economic burden of over $484 billion per year. 
One way we can and should continue to address this problem is through 
scientific research. Because of the critical importance of drug abuse 
research for the health and economy of our nation, we write to you 
today to request your support for a 6 percent increase for NIDA in the 
Fiscal 2006 Labor, Health and Human Services, Education and Related 
Agencies Appropriations bill. That would bring total funding for NIDA 
in Fiscal 2006 to $1,067,040,300. Recognizing that so many health 
research issues are inter-related, we also support a 6 percent increase 
for the National Institutes of Health overall, which would bring its 
total to $30 billion for Fiscal 2006.
    NIDA is the world's largest supporter of research on the health 
aspects of drug abuse and addiction. The Institute supports a 
comprehensive research portfolio that has led to our current 
understanding of addiction as a preventable developmental disorder and 
a chronic relapsing disease associated with long-lasting changes in the 
brain and the body that can affect all aspects of a person's life. 
NIDA's research portfolio is broad and deep, and spans the continuum of 
basic neuroscience, behavior and genetics research through applied 
health services research and epidemiology. This work deserves 
continuing, strong support from the Congress. Some examples include:
    New research supported by NIDA and others reveals that drug 
addiction is a ``developmental disease.'' That is, it often starts 
during the early developmental stages in adolescence and sometimes as 
early as childhood. This is a time when the brain undergoes major 
changes in both structure and function. We now know that the brain 
continues to develop throughout childhood and into early adulthood. 
Exposure to drugs of abuse at an early age may increase a child's 
vulnerability to the effects of drugs and may impact brain development. 
As a result, NIDA has increased its emphasis on adolescent brain 
development to better understand how developmental processes and 
outcomes are affected by drug exposure, the environment and genetics. 
Recent advances in genetic research have enabled researchers to start 
to investigate which genes make a person more vulnerable, which genes 
protect a person against addiction, and how genes and environment 
interact. As part of the prevention portfolio NIDA is also involving 
pediatricians and other primary care providers to develop tools, skills 
and knowledge to be able to screen and treat patients as early as 
possible, including patients with mental disorders who may be at a high 
risk to develop addiction. We know that if we do not intervene early, 
drug problems can last a lifetime, making prevention a high research 
priority.
    Treatment research is another priority area for NIDA. Significant 
effort is underway to develop, test, and ensure the delivery of 
evidence-based interventions to all practitioners and patients across 
the country. Building on advances from the Institute's basic 
neuroscience and behavioral research program NIDA has introduced a 
number of effective medications and behavioral treatments. The 
Institute also continues to look for more innovative, efficacious, and 
cost-effective ways to treat patients for a variety of addictions, 
including addiction to nicotine. NIDA is also using the National Drug 
Abuse Treatment Clinical Trials Network (CTN) to help respond to 
emerging public health needs like prescription drug abuse and the 
increases in patients who are seeking treatment for both substance 
abuse and mental disorders.
    Another priority area for NIDA is curtailing the spread of HIV/
AIDS. Because illicit drug use can impact decision-making and increase 
the likelihood that an individual will engage in risk-taking behaviors, 
treatment for drug abuse is, itself, HIV prevention. Drug abuse 
treatment can reduce activities related to drug use that increase the 
risk of getting or transmitting HIV. NIDA is especially interested in 
reducing HIV/AIDS rates in racial and ethnic minority populations, 
which are disproportionately affected by this disease.
    Recognizing substance abuse as a disorder that can affect the 
course of other diseases, including HIV/AIDS, mental illness, trauma, 
cancer, cardiovascular disease and even obesity is critical to 
improving the health of our citizens. NIDA has launched several efforts 
to reach out to numerous professions within the healthcare community to 
address these issues.

        ADDITIONAL SUCCESS STORIES, CHALLENGES AND OPPORTUNITIES

    Adolescent Brain Development--How Understanding the Brain Can 
Impact Prevention Efforts.--NIDA maintains a vigorous developmental 
research portfolio focused on adolescent populations. NIDA working 
collaboratively with other NIH Institutes has shown that the human 
brain does not fully develop until about age 25. This adds to the 
rationale for referring to addiction as a ``developmental disease;'' it 
often starts during the early developmental stages in adolescence and 
sometimes as early as childhood, a time when we know the brain is still 
developing. Having insight into how the human brain works, and 
understanding the biological underpinnings of risk taking among young 
people will help in developing more effective prevention programs. FoN 
believes NIDA should continue its emphasis on studying adolescent brain 
development to better understand how developmental processes and 
outcomes are affected by drug exposure, the environment and genetics.
    Medications Development.--NIDA has demonstrated leadership in the 
field of medications development by partnering with private industry to 
develop anti-addiction medications resulting in a new medication, 
buprenorphine, for opiate addiction. FoN recommends that NIDA continue 
its work with the private sector to develop much needed anti-addiction 
medications, for cocaine, methamphetamine, and marijuana dependence.
    Co-Occurring Disorders.--NIDA recognizes substance abuse rarely 
occurs in isolation. And to adequately address co-occurring substance 
abuse and mental health problems, NIDA has developed robust 
collaborations with other agencies (such as NIAAA, NIMH and SAMHSA) to 
stimulate new research to develop effective strategies and to ensure 
the timely adoption and implementation of evidence-based practices for 
the prevention and treatment of co-occurring disorders. Through these 
initiatives, NIDA is supporting research to determine the most 
effective models of clinically appropriate treatment and how to bring 
them to communities with limited resources. FoN recognizes the 
imperative for continued funding of essential research into the nature 
of and improved treatment for these complex disorders and endorses 
these efforts.
    Drug Abuse and HIV/AIDS.--One of the most significant causes of HIV 
virus acquisition and transmission involves drug taking practices and 
related risk factors in different populations (e.g. criminal justice, 
pregnant women, minorities, and youth). Drug abuse prevention and 
treatment interventions have been shown to be effective in reducing HIV 
risk. Therefore, FoN trusts that NIDA will continue its support of 
research that is focused on the development and testing of drug-abuse 
related interventions designed to reduce the spread of HIV/AIDS in 
these populations.
    Emerging Drug Problems.--NIDA recognizes that drug use patterns are 
constantly changing and expends considerable effort to monitor drug use 
trends and to rapidly inform the public of emerging drug problems. FoN 
believes NIDA should continue supporting research that provides 
reliable data on emerging drug trends, particularly among youth and in 
major cities across the country and will continue its leadership role 
in alerting communities to new trends and creating awareness about 
these drugs.
    Reducing Prescription Drug Abuse.--NIDA research has documented 
recent increases in the numbers of adults and young people who are 
using prescription drugs for non-medical purposes. Reducing 
prescription drug abuse, particularly among our Nation's youth will 
continue to be a priority for NIDA. FoN endorses NIDA's programmatic 
research designed to further the development of medications that are 
less likely to have abuse/addiction liability, and to develop 
prevention and treatment interventions for adolescents and adults who 
are abusing prescription drugs.
    Reducing Methamphetamine Abuse.--NIDA continues to recognize the 
epidemic abuse of methamphetamine across the United States. 
Methamphetamine abuse not only affects the users, but also the 
communities in which they live, especially due to the dangers 
associated with its production. FoN believes NIDA should continue to 
support research to address the medical consequences of methamphetamine 
abuse. Topics of particular concern include: understanding the effects 
of prenatal exposure to methamphetamine and developing 
pharmacotherapies and behavioral therapies to treat methamphetamine 
addiction.
    Reducing Inhalant Abuse.--For the second year in a row, NIDA's 
Monitoring the Future Survey (MTF) has shown an increase in the use of 
inhalants by 8th graders. Inhalants pose a particularly significant 
problem since they are readily accessible, legal, and inexpensive. They 
also tend to be abused by younger teens and can be highly toxic and 
even lethal. FoN applauds NIDA's inhalant research portfolio and 
believes NIDA should continue its support of research on prevention and 
treatment of inhalant abuse, and to enhance public awareness on this 
issue as it did recently with the release of a Community Drug Alert 
Bulletin: Inhalants, as well as its new dedicated web site, 
www.inhalants.drugabuse.gov.
    General Medical Consequences of Drug Abuse.--NIDA recognizes that 
addiction is a disorder that affects the course of other diseases such 
as cancer, cardiovascular and infectious diseases. Therefore, FoN 
believes that NIDA should continue to support research on the medical 
consequences associated with drug abuse and addiction.
    Long-Term Consequences of Marijuana Use.--NIDA research shows that 
marijuana can be detrimental to educational attainment, work 
performance, and cognitive function. However, more information is 
needed in order to assess the full impact of long-term marijuana use. 
Therefore, FoN recommends that NIDA continue to support efforts to 
assess the long-term consequences of marijuana use on cognitive 
abilities, achievement, and mental and physical health, as well as work 
with the private sector to develop medications focusing on marijuana 
addiction.
    Translating Research Into Practice.--NIDA has been a leader working 
with State substance abuse authorities to reduce the current 15- to 20-
year lag between the discovery of an effective treatment intervention 
and its availability at the community level. In particular, NIDA worked 
with SAMHSA on a recent RFA designed to strengthen State agencies' 
capacity to support and engage in research that will foster statewide 
adoption of meritorious science-based policies and practices. FoN 
believes that NIDA should continue collaborative work with States to 
ensure that research findings are relevant and adaptable by State 
Substance Abuse systems. NIDA is also to be congratulated for its broad 
and varied information dissemination programs as part of an effort to 
ensure drug abuse research is used in everyday practice. The Institute 
is focused on stimulating and supporting innovative research to 
determine the components necessary for adopting, adapting, delivering, 
and maintaining effective research-supported policies, programs, and 
practices. As evidence-based strategies are developed, FoN urges NIDA 
to support research to determine how these practices can be best 
implemented at the community level.
    Primary Care Settings and Youth.--NIDA recognizes that primary care 
settings, such as offices of pediatricians and general practitioners, 
are potential key points of access to prevent and treat problem drug 
use among young people; yet primary care and drug abuse services are 
commonly delivered through separate systems. FoN encourages NIDA to 
continue to support health services research on effective ways to 
educate primary care providers about drug abuse; develop brief 
behavioral interventions for preventing and treating drug use and 
related health problems, particularly among adolescents; and develop 
methods to integrate drug abuse screening, assessment, prevention and 
treatment into primary health care settings.
    Utilizing Knowledge of Genetics and New Technological Advances to 
Curtail Addiction.--NIDA recognizes that not everyone who takes drugs 
becomes addicted and that this is an important phenomenon worthy of 
further exploration. Research has shown that genetics plays a critical 
role in addiction, and that the interplay between genetics and 
environment is crucial. The science of genetics is at a crucial phase--
technological advances are providing the tools to make significant 
breakthroughs in disease research. For example, FoN believes NIDA 
should take advantage of new high-resolution genetic technologies which 
may help to develop new tailored treatments for smoking.
    Combating Nicotine Addiction.--NIDA understands that the use of 
tobacco products remains one of the Nation's deadliest addictions and 
Fon supports NIDA's continuing efforts to address this major public 
health problem through its comprehensive research portfolio.
    Reducing Health Disparities.--NIDA research demonstrates that the 
consequences of drug abuse disproportionately impacts minorities, 
especially African American populations. FON was pleased to learn that 
NIDA formed a Subgroup of its Advisory Council to address this 
important topic and applauds NIDA for working to strategically reduce 
the disproportionate burden of HIV/AIDS among the African American 
population. FoN believes that researchers should be encouraged to 
conduct more studies in this population and to target their studies in 
geographic areas where HIV/AIDS is high and or growing among African 
Americans, including in criminal justice settings.
    The Clinical Trials Network--Using Infrastructure to Improve 
Health.--NIDA's National Drug Abuse Treatment Clinical Trials Network 
(CTN), which was established in 1999 and has grown to include over 17 
research centers or nodes spread across the country. The CTN provides 
an infrastructure to test the effectiveness of new and improved 
interventions in real-life community settings with diverse populations, 
enabling an expansion of treatment options for providers and patients. 
FoN suggests NIDA continue to develop ways to use the CTN as a vehicle 
to address emerging public health needs.
    Neuroscience Blueprint and Training.--NIDA is one of the 15 
Institutes and Centers involved in the NIH Blueprint activities and FoN 
recommends that NIDA continue to demonstrate leadership to foster 
additional training in cross-cutting scientific issues.
    Neuroimaging and the Developing Brain.--NIDA has also demonstrated 
leadership in the development and application of neuroimaging 
technologies to gain a greater understanding of the circuitry of the 
human brain underlying drug addiction. FoN encourages NIDA to utilize 
neuroimaging technology to improve its understanding of how the brain 
of children and adolescents develop.
    Behavioral Science.--NIDA has long demonstrated a strong commitment 
to supporting behavioral science research. FoN encourages NIDA to 
continue to determine the interplay of behavioral, biological, and 
social factors that affect development and the onset of diseases like 
drug addiction to understand common pathways that may underlie other 
compulsive behaviors such as gambling and eating disorders.
    Drug Treatment in Criminal Justice Settings.--NIDA is very 
concerned about the well-known connections between drug use and crime. 
Research continues to demonstrate that providing treatment to 
individuals involved in the criminal justice system decreases future 
drug use and criminal behavior, while improving social functioning. 
Blending the functions of criminal justice supervision and drug abuse 
treatment and support services create an opportunity to have an optimal 
impact on behavior by addressing public health concerns while 
maintaining public safety. FoN strongly supports NIDA's efforts in this 
area, particularly the Criminal Justice Drug Abuse Treatment Studies 
(CJ-DATS), a multi-site set of research studies designed to improve 
outcomes for offenders with substance use disorders by improving the 
integration of drug abuse treatment with other public health and public 
safety systems.

                               CONCLUSION

    It is true that many challenges remain. However, only the resources 
available for carrying out its vital mission limit the potential 
contributions of NIDA-funded research to the lives of countless 
individuals. This is why the Friends of NIDA ask you to provide an 
appropriation of $1,067,040,300 billion to the Institute so that our 
nation and the world will continue to benefit from NIDA's commitment to 
improving health and scientific advancement.
    We understand that the fiscal year 2006 budget cycle will involve 
setting priorities and accepting compromise. However, in the current 
climate, we believe a focus on substance abuse and addiction, which 
according to the World Health Organization account for nearly 20 
percent of disabilities among 15-44 year olds, deserve to be 
prioritized accordingly. We look forward to working with you to make 
this a reality.
    Thank you, Mr. Chairman, and the Subcommittee, for your support for 
the National Institute on Drug Abuse.
                                 ______
                                 
             Prepared Statement of the Heart Rhythm Society

    The Heart Rhythm Society (HRS) thanks you and the Subcommittee on 
Labor, Health and Human Services and Education for your past and 
continued support of the National Institute of Health, and specifically 
the National Heart, Lung and Blood Institute (NHLBI). The Heart Rhythm 
Society is the international leader in science, education and advocacy 
for cardiac arrhythmia professionals and patients, and the primary 
information resource on heart rhythm disorders. Its mission is to 
improve the care of patients by promoting research, education and 
optimal health care policies and standards. Founded in 1979 to address 
the scarcity of information about the diagnosis and treatment of 
cardiac arrhythmias, the Heart Rhythm Society is the preeminent 
professional group representing more than 3,700 specialists in cardiac 
pacing and electrophysiology in 64 countries.
    The Heart Rhythm Society recommends the Subcommittee continue its 
commitment to supporting biomedical research in the United States and 
recommends Congress provide NIH with a 6 percent increase for fiscal 
year 2006. This translates into an appropriation of $30 billion for 
NIH, with $3.1 billion designated to the National Heart, Lung, and 
Blood Institute (NHLBI). This increase will enable the NIH and NHLBI to 
sustain the level of research that leads to research breakthroughs and 
improved health outcomes.
    In particular, the Heart Rhythm Society recommends Congress support 
research into abnormal rhythms of the heart, known as cardiac 
arrhythmias. HRS appreciates the actions of Congress to double the 
budget of the NIH in recent years. The doubling of the NIH budget has 
served to promote a series of innovations that have improved treatments 
and cures for a variety of medical problems facing our nation.

                        RESEARCH ACCOMPLISHMENTS

    In our field for example, this research has provided critically 
important insights into the genetic basis of sudden death syndrome, 
which takes the lives of infants, children and young adults born with 
inherited defects in the ion channels or contractile proteins of the 
heart. SIDS (Sudden Infant Death Syndrome) remains the leading cause of 
death for infants one month to one year of age, continuing to claim the 
lives of approximately 2,500 babies each year.\1\ Our research has led 
to the recognition that sudden infant death syndrome is due, in part, 
to abnormal rhythms of the heart. This research is offering these 
babies a chance at a normal life span.
---------------------------------------------------------------------------
    \1\ First Candle/SIDS Alliance, Facts on SIDS, 2005 http://
www.sidsalliance.org/FC-PDF4/Expectant%20Parents/facts%20on%20sids.pdf.
---------------------------------------------------------------------------
    Major advances have also been realized in our ability to treat 
atrial fibrillation and to prevent the complications of stroke. Atrial 
fibrillation is found in about 2.2 million Americans and is an 
independent risk factor for stroke, increasing the risk about 5-fold. 
About 15-20 percent of strokes occur in people with atrial 
fibrillation. Stroke is a leading cause of serious, long-term 
disability in the United States and people who have strokes caused by 
AF have been reported as 2-3 times more likely to be bedridden compared 
to those who have strokes from other causes. Each year about 700,000 
people experience a new or recurrent stroke and in 2002 stroke 
accounted for more than 1 of every 15 deaths in the United States.\2\
---------------------------------------------------------------------------
    \2\ American Stroke Association and American Heart Association, 
Heart Disease and Stroke Statistics--2005 Update, 2005 http://
www.americanheart.org/downloadable/heart/
1105390918119HDSStats2005Update.pdf.
---------------------------------------------------------------------------
    Ablation therapy has provided a cure for individuals whose rapid 
heart rates had previously incapacitated them, giving them a new lease 
on life. Important advances have been made in identifying patients with 
heart failure and those who had suffered a heart attack and are at risk 
for sudden death. The development and implantation of sophisticated 
internal cardioverter defibrillators (ICD) in such patients has saved 
the lives of hundreds of thousands and provided peace of mind for 
families everywhere, including that of Vice-President Cheney. A new 
generation of pacemakers and ICDs is restoring the beat of the heart as 
we grow older, permitting us to lead more normal lives. Many of these 
advances are due to the research sponsored by the NHLBI.

                          BUDGET JUSTIFICATION

    These impressive strides notwithstanding, cardiac arrhythmias 
continue to plague our society and take the lives of loved ones at all 
ages, nearly one every minute of every day. Sudden Cardiac Arrest is a 
leading cause of death in the United States, claiming an estimated 
325,000 lives every year, or one life every two minutes.\3\ The burden 
of morbidity and mortality due to cardiac arrhythmias is predicted to 
grow dramatically as the baby boomers age. Atrial fibrillation strikes 
3-5 percent of people over the age of 65,\4\ presenting a skyrocketing 
economic burden to our society in the form of healthcare treatment and 
delivery. As previously mentioned one in seven of all strokes are due 
to atrial fibrillation. It is estimated in 2005 that the direct and 
indirect cost of stroke will be $56.8 billion.\5\ Cardiac diseases of 
all forms increase with advancing age, ultimately leading to the 
development of arrhythmias.
---------------------------------------------------------------------------
    \3\ Heart Rhythm Foundation, The Facts on Sudden Cardiac Arrest, 
2004 http://www.heartrhythmfoundation.org/its_about_time/pdf/
provider_fact_sheet.pdf.
    \4\ Heart Rhythm Society, Atrial Fibrillation & Flutter, 2005 
http://www.hrspatients.org/patients/heart_disorders/
atrial_fibrillation/default.asp.
    \5\ American Stroke Association, Impact of Stroke, 2005 http://
www.strokeassociation.org/presenter.jhtml?identifier=1033.
---------------------------------------------------------------------------
    The above progress we have witnessed in recent years is gradually 
eroding as the resources available to the academic scientific and 
medical community are diminished. The budgets appropriated by Congress 
to the NIH in the past two years averaged 2.8 percent and were far 
below the level of scientific inflation. These vacillations in funding 
cycles threaten the continuity of the research and the momentum that 
has been gained over the years.
    It is for this reason that we are asking for your support to 
increase NIH appropriations by 6 percent for a fiscal year 2006 budget 
of $30 billion for NIH and $3.1 billion for NHLBI. The Heart Rhythm 
Society recommends Congress specifically acknowledge the need for 
cardiac arrhythmia research to prevent sudden cardiac arrest and other 
life threatening conditions such as sudden infant death syndrome, 
definitive therapeutic approaches for atrial fibrillation and the 
prevention of stroke, and other genetic arrhythmia conditions.
    Thank you very much for your consideration of our request. If you 
have any questions or need additional information, please contact Amy 
Melnick, Vice-President, Health Policy at the Heart Rhythm Society 
([email protected] or 202-464-3434). Thank you again for the 
opportunity to submit testimony.
                                 ______
                                 
       Prepared Statement of the Hemophilia Federation of America

              SUMMARY OF FISCAL YEAR 2006 RECOMMENDATIONS

  --Continued support for the completion of Ricky Ray Hemophilia Relief 
        Fund ``half-cases''.
  --An additional $10 million for Hemophilia Treatment Centers through 
        the Maternal Child Health Bureau at the Health Resources and 
        Services Administration.
  --Continued support for the Centers for Disease Control and 
        Prevention's hemophilia grant program, including expansion of 
        the program to additional patient-based organizations within 
        the hemophilia community.
  --A 6 percent increase overall for the National Institutes of Health, 
        including a 6 percent increase for the National Heart, Lung, 
        and Blood Institute, and the National Institute for Allergy and 
        Infectious Diseases.

                              INTRODUCTION

    The Hemophilia Federation of America (HFA) is a national voluntary 
health organization that both assists and advocates for the blood 
clotting disorders community. The Federation was founded in 1994 and 
exists for the purpose of serving its constituents as an advocate for 
blood safety, best practices treatment for hemophilia, issues involving 
health insurance, and enhancing the quality of life for those who 
suffer with hemophilia and other blood clotting disorders. Our mission 
is to serve the needs of all families with coagulation disorders and 
mitigate the complications of treatment. Our vision at the Hemophilia 
Federation of America is that the blood clotting disorders community 
has removed all barriers to both choice of treatment and quality of 
life.
    The Hemophilia Federation of America provides a multitude of 
programs and services to the bleeding disorder community. These 
programs include the Emergency Room Triage Program, which educates 
emergency room physicians and support staff to the sensitivities of 
patients with hemophilia need in an ER medical setting. The Moms on a 
Mission and Dads in Action programs work to intimately educate parents 
of those with hemophilia to be active in the care of their child and 
understand the care that the disorder needs to lead a healthy, 
productive life. The Helping Hands Project assists struggling families 
of hemophilia patients with resources to meet their medical and living 
expenses, because of the high costs of hemophilia treatment. HFA is 
proud of the services our organization provides to the hemophilia 
community and encourages the community to take advantage of them.

                    RICKY RAY HEMOPHILIA RELIEF FUND

    Mr. Chairman, we are extremely grateful for your leadership last 
year in supporting efforts to finalize pending ``half-cases'' within 
the Ricky Ray Hemophilia Relief Fund.
    The closing of the Ricky Ray fund in November of 2003 marked the 
completion of the 5-year period that the federal government designated 
to provide compassionate payments to those in the hemophilia community 
who were infected with HIV/AIDS due to contaminated anti-hemophilia 
factor concentrates in the 1980s.
    In the closing days of the Fund, the program administrator 
contacted HFA to ask for our assistance in the completion of many 
unfinished cases. He brought to our attention 43 cases where the 
entitled family only received half of the compassionate payment, due to 
a parent's absence from a patient's life. The Ricky Ray Fund 
administrator asked the Federation to assist him in the adjudication of 
those cases that qualified for additional support. HFA would like to 
thank the subcommittee for its assistance in working with the community 
to provide the remaining payments and encourage you to continue this 
support until this process is completed.

      HEMOPHILIA TREATMENT CENTERS/HEALTH RESOURCES AND SERVICES 
                             ADMINISTRATION

    In 1974, Congress created a network of Hemophilia Treatment Centers 
(HTCs) throughout the United States. This treatment centers remain 
essential to ensuring that comprehensive and specialized care is 
available for persons with bleeding disorders. There are currently over 
130 HTCs in the United States. These centers abide by federal 
guidelines for the delivery of comprehensive hemophilia services as 
developed by the Maternal Child Health Bureau and the Centers for 
Disease Control and Prevention.
    Hemophilia Treatment Centers provide family centered, state of the 
art medical and psychosocial services, as well as education and 
research to persons with inherited bleeding disorders. The bleeding 
disorder community utilizes many services through the Hemophilia 
Treatment Centers. These services include diagnostic evaluations for 
hemophilia, von Willebrand disease and other bleeding disorders. They 
also include annual comprehensive evaluations, clinical trials on new 
blood clotting therapies, coordination with the individual's primary 
care physician, emergency consultations, hematological management for 
surgeries, dental procedures and childbirth. Hemophilia Treatment 
Centers educate patients and family members on infusion training, 
encourage collaboration with HTC clinicians throughout the United 
States, participate in CDC research, and collaboration with the 
hemophilia voluntary health community.
    For fiscal year 2006 HFA encourages the subcommittee to increase 
funding for HTC's at the Maternal and Child Health Bureau by $10 
million.

    HEMOPHILIA GRANT PROGRAM AT THE CENTERS FOR DISEASE CONTROL AND 
                               PREVENTION

    Mr. Chairman, HFA strongly supports the expansion of the Centers 
for Disease Control and Prevention's hemophilia grant program. This 
important initiative provides support for education and awareness 
activities regarding hemophilia, as well as disease management, blood 
safety, and surviellance projects.
    Given the important contributions that all voluntary organizations 
in the hemophilia community make to patients and families, we are 
recommending that steps be taken to ensure that additional 
organizations can participate in the hemophilia program on an annual 
basis. Based on the current structure of the grant program, only one 
organization is able to receive funds to support patients. In order to 
maximize the effectiveness of this important initiative, we believe 
that additional organizations should be empowered to participate in the 
CDC program on an annual basis. We encourage the subcommittee to 
support our efforts in this area in fiscal year 2006 bill.

                     NATIONAL INSTITUTES OF HEALTH

    HFA applauds the National Heart, Lung and Blood Institute and the 
National Institute of Allergy and Infectious Diseases for their support 
of hemophilia research. In addition, we are grateful to the 
subcommittee for recognizing the growing problem of women and bleeding 
disorders, which if left untreated, can lead to such dangerous medical 
conditions as anemia, unnecessary hysterectomies, and complications 
during menstruation.
    Patients and families in the hemophilia community are placing their 
hopes for a better quality of life on treatment advances made through 
biomedical research. For fiscal year 2006, we encourage the 
subcommittee to provide a 6 percent increase overall for NIH, and a 6 
percent increase for NHBLI and NIAID.
    Mr. Chairman, thank you for the opportunity to present the views of 
the Hemophilia Federation of America. If you have any questions, please 
do not hesitate to contact HFA's Washington Representative, Dale Dirks 
at (202) 544-7499.
                                 ______
                                 
      Prepared Statement of the Hepatitis Foundation International

              SUMMARY OF FISCAL YEAR 2006 RECOMMENDATIONS

  --Continue the great strides in research and prevention at the 
        National Institutes of Health (NIH) by providing a 6 percent 
        budget increase for fiscal year 2006. Increase funding for the 
        National Institute for Allergy and Infectious Diseases (NIAID), 
        the National Institute of Diabetes and Digestive and Kidney 
        Diseases (NIDDK), the National Institute on Alcohol Abuse and 
        Alcoholism (NIAAA), and the National Institute on Drug Abuse 
        (NIDA) by 6 percent.
  --$41 million in fiscal year 2006 for a hepatitis B vaccination 
        program for high risk adults at CDC as recommended by the 
        National Hepatitis C Prevention Strategy.
  --$40 million in fiscal year 2006 for CDC's Prevention Research 
        Centers.
  --Continued support of the National Viral Hepatitis Roundtable.
    Mr. Chairman and members of the subcommittee thank you for your 
continued leadership in promoting better research, prevention, and 
control of diseases affecting the health of our nation. I am Thelma 
King Thiel, Chairman and Chief Executive Officer of the Hepatitis 
Foundation International (HFI), representing members of 425 patient 
support groups across the nation, the majority of whom suffer from 
chronic viral hepatitis.
    Currently, five types of viral hepatitis have been identified, 
ranging from type A to type E. All of these viruses cause acute, or 
short-term, viral hepatitis. Hepatitis B, C, and D viruses can also 
cause chronic hepatitis, in which the infection is prolonged, sometimes 
lifelong. While treatment options are available for all types of 
hepatitis, individuals with chronic viral hepatitis (types B, C, and D) 
represent the majority of liver failure and transplant patients. 
Treatment options and immunizations are available for most types of 
hepatitis (see below). However, all types of viral hepatitis are 
preventable.

                              HEPATITIS A

    The hepatitis A virus (HAV) is contracted through fecal/oral 
contact (i.e. fecal contamination of food, or diaper changing tables if 
not cleaned properly), and sexual contact. In addition, eating raw or 
partially cooked shellfish contaminated with HAV can spread the virus. 
Children with HAV usually have no symptoms; however, adults may become 
quite ill suddenly experiencing jaundice, fatigue, nausea, vomiting, 
abdominal pain, dark urine/light stool, and fever. There is no 
treatment for HAV; however, recovery occurs over a 3 to 6 month period. 
About 1 in 1,000 with HAV suffer from a sudden and severe infection 
that may require a liver transplant. Luckily, a highly effective 
vaccine can prevent HAV. This vaccination is recommended for 
individuals who have chronic liver disease (i.e. HCV or HBV) or 
clotting factor disorders, in addition to those who travel or work in 
developing countries.

                              HEPATITIS B

    Hepatitis B (HBV) claims an estimated 5,000 lives every year in the 
United States, even though we have therapies to both prevent and treat 
this disease. This disease is spread through contact with the blood and 
body fluids of an infected individual. Unfortunately, due to both a 
lack in funding to vaccinate adults at high risk of being infected and 
the absence of an integrated preventive education strategy, 
transmission of hepatitis B continues to be problematic. Additionally, 
there are significant disparities in the occurrence of chronic HBV-
infections. Asian Americans represent four percent of the population; 
however, they account for over half of the 1.3 million chronic 
hepatitis B cases in the United States. Current treatments have limited 
success in treating the chronically infected and there is no treatment 
available for those who are considered ``HBV carriers''. Preventive 
education and vaccination are the best defense against hepatitis B.

                              HEPATITIS C

    Infection rates for hepatitis C (HCV) are at epidemic proportions. 
Unfortunately, as many are not aware of their infection until several 
years after infection, we are dealing with an ``epidemic of 
discovery''. This creates a vicious cycle, as individuals who are 
infected continue to spread the disease, unknowingly. Hepatitis C is 
also spread through contact with an infected individual's blood. The 
CDC estimates that there are over 4 million Americans who have been 
infected with hepatitis C, of which over 2.7 million remain chronically 
infected, with 8,000-10,000 deaths each year. Additionally, the death 
rate is expected to triple by 2010 unless additional steps are taken to 
improve outreach and education on the prevention of hepatitis C, new 
research is undertaken, and case-finding is enhanced and more effective 
treatments are developed. As there is no vaccine for HCV, prevention 
education and treatment of those who are infected serve as the most 
effective approach in halting the spread of this disease.

                         PREVENTION IS THE KEY

    Only a major investment in immunization and preventive education 
will bring these diseases under control. All newborns, young children, 
young adults, and especially those who participate in high-risk 
behaviors must be a priority for immunization, outreach initiatives and 
preventive education. We recommend that the following activities be 
undertaken to prevent the further spread of all types of hepatitis:
  --Provide effective preventive education in our elementary and 
        secondary schools helping children avoid the ravages of health 
        problems resulting from viral hepatitis infection.
  --Training educators, health care professionals, and substance abuse 
        counselors in effective communication and counseling 
        techniques.
  --Public awareness campaigns to alert individuals to assess their own 
        risk behaviors, motivate them to seek medical advice, encourage 
        immunization against hepatitis A and B, and to stop the 
        consumption of any alcohol if they have participated in risky 
        behaviors that may have exposed them to hepatitis C.
  --Expansion of screening, referral services, medical management, 
        counseling, and prevention education for individuals who have 
        HIV/AIDS, many of whom may be co-infected with hepatitis.
    HFI recommends an increase of $41 million in fiscal year 2006 for 
further implementation of CDC's Hepatitis C Prevention Strategy. This 
increase will support and expand the development of state-based 
prevention programs by increasing the number of state health 
departments with CDC funded hepatitis coordinators. The Strategy will 
use the most cost-effective way to implement demonstration projects 
evaluating how to integrate hepatitis C and hepatitis B prevention 
efforts into existing public health programs. Additionally, HFI 
recommends that $10 million be used to train and maintain hepatitis 
coordinators in every state.
    CDC's Prevention Research Centers, an extramural research program, 
plays a critical role in reducing the human and economic costs of 
disease. Currently, CDC funds 26 prevention research centers at schools 
of public health and schools of medicine across the country. HFI 
encourages the Subcommittee to increase core funding for these 
prevention centers, as it has been decreasing since this program was 
first funded in 1986. We recommend the Subcommittee provide $40 million 
for the Prevention Research Centers program in fiscal year 2005.

                        INVESTMENTS IN RESEARCH

    Investment in the National Institutes of Health (NIH) has led to an 
explosion of knowledge that has advanced understanding of the 
biological basis of disease and development of strategies for disease 
prevention, diagnosis, treatment, and cures. Countless medical advances 
have directly benefited the lives of all Americans. NIH-supported 
scientists remain our best hope for sustaining momentum in pursuit of 
scientific opportunities and new health challenges. For example, 
research into why some HCV infected individuals resolve their infection 
spontaneously may prove to be life saving information for others 
currently infected. Other areas that need to be addressed are:
  --Reasons why African Americans do not respond to antiviral agents in 
        the treatment of chronic hepatitis C.
  --Pediatric liver diseases, including viral hepatitis.
  --The outcomes and treatment of renal dialysis patients who are 
        infected with HCV.
  --Co-infections of HIV/HCV and HIV/HBV positive patients.
  --Hemophilia patients who are co-infected with HIV/HCV and HIV/HBV.
  --The development of effective treatment programs to prevent 
        recurrence of HCV infection following liver transplantation.
  --The development of effective vaccines to prevent HCV infection.
    The Hepatitis Foundation International supports a 6 percent 
increase for NIH in fiscal year 2006. HFI also recommends a comparable 
increase of 6 percent in hepatitis research funding at the National 
Institute of Diabetes and Digestive and Kidney Diseases and the 
National Institute of Allergy and Infectious Diseases.

                  NATIONAL VIRAL HEPATITIS ROUNDTABLE

    Victims of hepatitis suffer emotionally as well as physically. They 
experience discrimination in employment, strained personal 
relationships and severe depression when treatments fail to control 
their illness as well as during their treatment. Traditionally, 
however, there has not been an organized effort to periodically convene 
all stakeholder organizations that play a role in hepatitis prevention, 
education, treatment and patient advocacy. Successfully addressing 
viral hepatitis will require a comprehensive and strategic approach 
developed by all key stakeholders.
    In order to fill this void, HFI and CDC co-founded the ``National 
Viral Hepatitis Roundtable''. HFI believes that a National Viral 
Hepatitis Roundtable will enhance and assist CDC's viral hepatitis 
mission for the prevention, control, and elimination of hepatitis virus 
infections in the United States, as well as the international public 
health community. It will provide an infrastructure for the sharing of 
information and education of all stakeholders.
    The ``National Viral Hepatitis Roundtable'' is a coalition of 
public, private, and voluntary organizations dedicated to reducing the 
incidence of infection, morbidity, and mortality from viral hepatitis 
in the United States through research, strategic planning, 
coordination, advocacy, and leadership.
    HFI is dedicated to the eradication of viral hepatitis, which 
affects over 500 million people around the world. We seek to raise 
awareness of this enormous worldwide problem and to motivate people to 
support this important--and winnable--battle. Thank you for providing 
this opportunity to present our testimony.

                 THE HEPATITIS FOUNDATION INTERNATIONAL

    The Hepatitis Foundation International (HFI) is dedicated to the 
eradication of viral hepatitis, a disease affecting over 500 million 
people around the world. We seek to raise awareness of this enormous 
worldwide problem and to motivate people to support this important--and 
winnable--battle.
    Our mission has four distinct parts:
  --Teach the public and hepatitis patients how to prevent, diagnose, 
        and treat viral hepatitis.
  --Prevent viral hepatitis by promoting liver wellness and healthful 
        lifestyles.
  --Serve as advocates for hepatitis patients and the related medical 
        community worldwide.
  --Support research into prevention, treatment, and cures for viral 
        hepatitis.
                                 ______
                                 
   Prepared Statement of the International Foundation for Functional 
                       Gastrointestinal Disorders

              SUMMARY OF FISCAL YEAR 2006 RECOMMENDATIONS

  --Provide a 6 percent increase for fiscal year 2006 to the National 
        Institutes of Health (NIH) budget. Within NIH, provide 
        proportional increases of 6 percent to the various institutes 
        and centers, specifically, the National Institute of Diabetes 
        and Digestive and Kidney Diseases (NIDDK).
  --Continue to accelerate funding for extramural clinical and basic 
        functional gastrointestinal research at NIDDK.
  --Continue to urge NIDDK to develop a strategic plan setting research 
        goals on IBS and functional bowel diseases and disorders.
  --Urge NIDDK to develop a standardization of scales to measure 
        incontinence severity and quality of life and to develop 
        strategies for primary prevention of fecal incontinence 
        associated with childbirth.
  --Provide funding to NIDDK and the National Cancer Institute (NCI) 
        for more research on the causes of esophageal cancer.
    Chairman Specter and members of the Subcommittee, thank you for the 
opportunity to present this written statement regarding the importance 
of functional gastrointestinal and motility research.
    IFFGD has been serving the digestive disease community for fourteen 
years. We work to broaden the understanding about functional 
gastrointestinal and motility disorders in adults and children.
    IFFGD speaks about and raises awareness on disorders and diseases 
that many people are uncomfortable and embarrassed to talk about. The 
prevalence of fecal incontinence and irritable bowel syndrome, as well 
as a host of other gastrointestinal disorders affecting both adults and 
children, is underestimated in the United States. These conditions are 
truly hidden in our society. Not only are they misunderstood, but the 
burden of illness and human toll has not been fully recognized.
    Given that we have been diligently working for the past thirteen 
years, it is an exciting time to work for IFFGD, not only are we 
serving more and more people, but we are beginning to be able to 
privately fund research. Our first research awards were made on April 
6, 2003.
    Since its establishment, the IFFGD has been dedicated to increasing 
awareness of functional gastrointestinal disorders and motility 
disorders, among the public, health professionals, and researchers. In 
November of 2002, we hosted a conference on fecal and urinary 
incontinence, the proceedings of which were published in 
Gastroenterology, the Official Journal of the American 
Gastroenterological Association. During the first week of April 2003 we 
also hosted the Fifth International Symposium on Functional 
Gastrointestinal Disorders, which was a great success in bringing 
scientists from across the world together to discuss the current 
science and opportunities on irritable bowel syndrome and other 
functional gastrointestinal and motility disorders. The IFFGD has 
become known for our professional symposia. We consistently bring 
together a unique group of international multidisciplinary 
investigators to communicate new knowledge in the field of 
gastroenterology. In 1 week, we will be holding the Sixth International 
Symposium on Functional Gastrointestinal Disorders.
    The majority of the diseases and disorders we address have no cure. 
We have yet to understand the pathophysiology of the underlying 
conditions. Patients face a life of learning to manage chronic illness 
that is accompanied by pain and an unrelenting myriad of 
gastrointestinal symptoms. The costs associated with these diseases are 
enormous, conservative estimates range between $25-$30 billion 
annually. The human toll is not only on the individual but also on the 
family. Economic costs spill over into the workplace. In essence these 
diseases reflect lost potential for the individual and society. The 
IFFGD is a resource and provides hope for hundreds of thousands of 
people as they try to regain as normal a life as possible.

                           FECAL INCONTINENCE

    At least 6.5 million Americans suffer from fecal incontinence. 
Incontinence is neither part of the aging process nor is it something 
that affects only the elderly. Incontinence crosses all age groups from 
children to older adults, but is more common among women and in the 
elderly of both sexes. Often it is a symptom associated with various 
neurological diseases and many cancer treatments. Yet, as a society, we 
rarely hear or talk about the bowel disorders associated with multiple 
sclerosis, diabetes, colon cancer, uterine cancer, and a host of other 
diseases.
    Damage to the anal sphincter muscles; damage to the nerves of the 
anal sphincter muscles or the rectum; loss of storage capacity in the 
rectum; diarrhea; or pelvic floor dysfunction can cause fecal 
incontinence. People who have fecal incontinence may feel ashamed, 
embarrassed, or humiliated. Some don't want to leave the house out of 
fear they might have an accident in public. Most try to hide the 
problem as long as possible, so they withdraw from friends and family. 
The social isolation is unfortunate but may be reduced because 
treatment can improve bowel control and make incontinence easier to 
manage.
    In November 2002, the International Foundation for Functional 
Gastrointestinal Disorders (IFFGD) sponsored a consensus conference--
``Advancing the Treatment of Fecal and Urinary Incontinence Through 
Research: Trial Design, Outcome Measures, and Research Priorities.'' 
Among other outcomes, the conference resulted in six key research 
recommendations:
    1. More comprehensive identification of quality of life issues 
associated with fecal incontinence and improved assessment and 
communication of treatment outcomes related to quality of life.
    2. Standardization of scales to measure incontinence severity and 
quality of life.
    3. Assessment of the utility of diagnostic tests for affecting 
management strategies and treatment outcomes.
    4. Development of new drug compounds offering new treatment 
approaches to fecal incontinence.
    5. Development and testing of strategies for primary prevention of 
fecal incontinence associated with childbirth.
    6. Further understanding of the process of stigmatization as it 
applies to the experience of individuals with fecal incontinence.

                     IRRITABLE BOWEL SYNDROME (IBS)

    Irritable Bowel Syndrome affects approximately 30 million 
Americans. This chronic disease is characterized by a group of 
symptoms, which can include abdominal pain or discomfort associated 
with a change in bowel pattern, such as loose or more frequent bowel 
movements, diarrhea, and/or constipation. Although the cause of IBS is 
unknown, we do know that this disease needs a multidisciplinary 
approach in research and treatment.
    Similar to fecal incontinence and depending on severity, IBS can be 
emotionally and physically debilitating. Because of persistent bowel 
irregularity, individuals who suffer from this disorder may distance 
themselves from social events, work, and even may fear leaving their 
home.
    In the House and Senate fiscal year 2003, 2004, and 2005 Labor, 
Health and Human Services, and Education Appropriations bills, Congress 
recommended that the National Institute of Diabetes and Digestive and 
Kidney Diseases (NIDDK) develop an IBS strategic plan. The development 
of a strategic plan on IBS would greatly increase the institute's 
progress toward the needed research on this functional gastrointestinal 
disorder.

                 GASTROESOPHAGEAL REFLUX DISEASE (GERD)

    Gastroesophageal reflux disease, or GERD, is a very common disorder 
affecting both adults and children, which results from the back-flow of 
acidic stomach contents into the esophagus. GERD is often accompanied 
by persistent symptoms, such as chronic heartburn and regurgitation of 
acid. But sometimes there are no apparent symptoms, and the presence of 
GERD is revealed when complications become evident. Symptoms of GERD 
vary from person to person. The majority of people with GERD have mild 
symptoms, with no visible evidence of tissue damage and little risk of 
developing complications. Periodic heartburn is a symptom that many 
people experience. There are several treatment options available for 
individuals suffering from GERD.
    Gastroesophageal reflux (GER) affects as many as one third of all 
full term infants born in America each year. GER results from an 
immature upper gastrointestinal motor development. The prevalence of 
GER is increased in premature infants. Many infants require medical 
therapy in order for their symptoms to be controlled. Up to 25 percent 
of older children and adolescents will have GER or GERD due to lower 
esophageal sphincter dysfunction. In this population, the natural 
history of GER is similar to that of adult patients, in whom GER tends 
to be persistent and may require long-term treatment.

                           ESOPHAGEAL CANCER

    Approximately 13,000 new cases of esophageal cancer are diagnosed 
every year in this country. Although the causes of this cancer are 
unknown, it is thought that this cancer may be more prevalent in 
individuals who develop Barrett's esophagus. Diagnosis usually occurs 
when the disease is in an advanced stage, early screening tools are 
currently unavailable.

              CHILDHOOD DEFECATION DISORDERS AND DISEASES

    Chronic Intestinal Pseudo-Obstruction (CIP).--About 200 new cases 
of CIP are diagnosed in American Children each year. Often life 
threatening, the future for children severely affected with CIP is 
brightened by the evolving promise of cure with intestinal or multi-
organ transplantation.
    Hirschsprung's disease.--A serious childhood and sometimes life-
threatening condition that can cause constipation, occurs only once in 
every 5,000 American children born each year. Approximately 20 percent 
of children with HD will continue to have complications following 
surgery. These complications include infection and/or fecal 
incontinence.
    Functional constipation.--Millions of children (1 in every 10) each 
year will be diagnosed with functional constipation. In fact, it is the 
chief complaint of 3 percent of pediatric outpatient visits and 10-25 
percent of pediatric gastroenterology visits.

  FUNCTIONAL GASTROINTESTINAL AND MOTILITY DISORDERS AND THE NATIONAL 
                          INSTITUTES OF HEALTH

    The International Foundation for Functional Gastrointestinal 
Disorders recommends an increase of 6 percent or 1.7 billion for NIH 
overall, and a 6 percent increase for NIDDK. However, we request that 
this increase for NIH does not come at the expense of other Public 
Health Service agencies.
    We urge the subcommittee to provide the necessary funding for the 
expansion of the NIDDK's research program on functional 
gastrointestinal (FGI) and motility disorders, this increased funding 
will allow for the growth of new research, a prevalence study and a 
strategic plan on IBS, and increased public and professional awareness 
of FGI and motility disorders.
    A primary tenant of IFFGD's mission is to ensure that clinical 
advancements concerning GI disorders result in improvements in the 
quality of life of those affected. By working together, this goal will 
be realized and the suffering and pain millions of people face daily 
will end.
    Thank you.
The International Foundation for Functional Gastrointestinal Disorders
    The International Foundation for Functional Gastrointestinal 
Disorders is a nonprofit education and research organization founded in 
1991. IFFGD addresses the issues surrounding life with gastrointestinal 
(GI) functional and motility disorders and increases the awareness 
about these disorders among the general public, researchers, and the 
clinical care community.
                                 ______
                                 
         Prepared Statement of the Lymphoma Research Foundation

    I am Melanie Smith, Director of Public Policy and Advocacy for the 
Lymphoma Research Foundation (LRF). LRF appreciates the opportunity to 
submit this statement to the record of the Labor, Health and Human 
Services and Education Appropriations Subcommittee. The LRF is the 
nation's largest lymphoma-focused voluntary health organization devoted 
exclusively to funding lymphoma research and providing patients and 
healthcare professionals with critical information on the disease. Our 
ultimate goal is to find a cure for all forms of lymphoma. To that end, 
we fund some of the world's leading lymphoma researchers at outstanding 
academic institutions. These researchers are engaged in research aimed 
at understanding the basic mechanisms of lymphoma and improving the 
current treatments for the disease. LRF also aims to equip those who 
are diagnosed with lymphoma with up-to-date information about treatment 
options. The organization sponsors educational conferences at which the 
leaders in lymphoma research and treatment address patients and 
families regarding cutting edge research and the most recent 
developments in therapies.

                         BACKGROUND ON LYMPHOMA

    Lymphoma is a major health problem. It is the most common form of 
blood cancer and the third most common form of childhood cancer. In 
2005, approximately 56,390 cases of non-Hodgkin's lymphoma (NHL) will 
be diagnosed in this country, and more than 19,000 Americans will die 
from NHL. Also this year, 7,350 cases of Hodgkin's lymphoma will be 
diagnosed, and more than 1,400 Americans will die from the disease. 
Nearly 500,000 Americans are living with lymphoma.
    In recent years, there have been exciting reports regarding the 
improvements in treatments for a number of forms of cancer, as well as 
reports that the incidence of cancer overall is declining. Regrettably, 
NHL stands in contrast to the general trends in cancer incidence, and 
the treatment options for NHL remain inadequate. Since the early 1970s, 
incidence rates for NHL have nearly doubled, although incidence rates 
have stabilized the last few years. And the 5-year survival rate for 
NHL stands at 59 percent. These are not satisfactory numbers, and they 
serve as measures of the work we still have to do.

                          RESEARCH ON LYMPHOMA

    We have learned a great deal about the genetic, molecular, and 
cellular basis of cancer. We do not know the cause of most lymphomas, 
but there is increasing information to suggest a link between 
environmental factors and infections and the development of many 
lymphomas. The environmental factors may include chemicals, toxins, 
drugs, infectious agents, such as hepatitis C and Epstein Barr virus, 
and the gastric pathogen Helicobacter pylori. There is strong evidence 
that in some individuals, immune dysfunction is a critical factor in 
the development of lymphoma.
    Our knowledge of cancer has improved significantly in the last 
decade, in large part due to the strong commitment of Congress to the 
National Institutes of Health (NIH) and its willingness to boost NIH 
funding. These funds have supported strong basic and clinical 
researchers who are focused on unlocking the secrets to cancer. There 
is a need to sustain that commitment to NIH, in order to equip 
scientists engaged in basic research and facilitate the translation of 
basic research findings into new treatments. This is certainly true in 
the case of lymphoma. There is a need to clarify the interactions among 
the environmental, viral, and immunogenetic factors that contribute to 
development of lymphoma and to ensure the development of new treatments 
based on our enhanced understanding of lymphoma.
    Over the last decade several new lymphoma treatments have been 
developed, expanding the options for those who are diagnosed with the 
disease. Lymphoma patients and researchers have clearly benefited from 
the nation's significant investment in research, and Congress deserves 
the appreciation of the community of lymphoma patients and researchers. 
Among the lymphoma treatments approved in the last decade are a 
monoclonal antibody and two different radioimmunotherapies. While we 
applaud the new treatments of the last decade, they are not magic 
bullets. For many, lymphoma remains a fatal disease.
    New therapies that capitalize on different research approaches are 
currently under investigation. These include therapeutic vaccines, 
immunotherapies, proteasome inhibitors, and examination of the 
microenvironment of lymphomas. Other work is focused on refining the 
chemotherapy regimens and developing treatment regimens with lower 
toxicities. All of this work deserves the support of private and public 
research funders.

                    ROLE OF NIH IN LYMPHOMA RESEARCH

    Although LRF plays a critical and creative role in funding lymphoma 
research, NIH is, and will remain, the key player in this field. NIH is 
the pivotal player not only because of the magnitude of its financial 
commitment to lymphoma research, but also because of the role it can 
play in bringing together all of the partners in the research 
community--NIH intramural researchers, academic researchers, private 
foundations, industry, and the Food and Drug Administration (FDA).
    NIH is also in the best position to encourage, facilitate, and fund 
the translation of basic research findings into new treatments. It is 
absolutely critical that we not lose the research momentum that has 
been the result, in significant part, because of the doubling of the 
NIH budget between fiscal year 1999 and fiscal year 2003. We recognize 
that funding for NIH will not be increased as rapidly in the near 
future as it was from fiscal year 1999 to fiscal year 2003, but we urge 
Congress to protect the investment in NIH research and to realize that 
a rapid deceleration in research funding threatens the past investment.
    LRF recommends that Congress urge NIH to direct special attention 
to translational and clinical research. LRF proposes that NIH 
strengthen its lymphoma research program by several actions:
  --The National Cancer Institute (NCI) should boost its support for 
        translational and clinical lymphoma research. NCI should 
        evaluate its current investment in clinical research and expand 
        or initiate programs to strengthen the clinical research 
        effort.
  --NCI should also increase its support for correlative studies of 
        tumor biology and treatment response, as well as its investment 
        in research on the late and long-term effects of current 
        lymphoma treatments.
  --NCI should strengthen its research effort focused on understanding 
        the complex interaction among environmental, viral and 
        immunogenetic factors that are involved in the initiation and 
        promotion of lymphoma.
  --Although NCI has historically been the lead institute in funding 
        lymphoma research, other institutes--the National Heart, Lung, 
        and Blood Institute (NHLBI), the National Institute on Aging 
        (NIA), and the National Institute of Environmental Health 
        Sciences (NIEHS)--should also evaluate and improve their 
        lymphoma research programs. A lymphoma-focused program to 
        investigate environmental/viral links is warranted.
    A strong partnership among voluntary health agencies like LRF, 
academic researchers, industry, and NIH will be optimal for advancing 
lymphoma research and improving the outlook for those who are diagnosed 
with the disease. New strategies are necessary for the rapid 
translation of basic research findings into new treatments. These 
strategies may include systems for funding collaborative research 
projects that engage researchers in multiple institutions and multiple 
disciplines, including academic researchers and industry. Private 
foundations are looking at creative means to ensure that their research 
dollars are optimized, and we encourage NIH to employ the same creative 
and flexible approaches.

ROLE OF THE CENTERS FOR DISEASE CONTROL AND PREVENTION IN BLOOD CANCER 
                               EDUCATION

    LRF is actively engaged in providing patients and their families 
and caregivers complete and up-to-date information about lymphoma, 
lymphoma research, and lymphoma treatment options. Because of our 
strong history in this area, we were gratified when Congress authorized 
and funded a program at the Centers for Disease Control and Prevention 
(CDC) for public and patient education on blood cancers. LRF was one of 
nine organizations that received grants, funded by fiscal year 2004 
appropriations, for public and patient education regarding the blood 
cancers. The benefits of our federally funded program, Lymphoma 
Awareness for Multicultural Populations (LAMP), which includes outreach 
to underserved communities, are already being realized.
    Congress was also generous in providing funding for this program in 
fiscal year 2005, an action that will allow the organizations to 
continue their programs and conduct full evaluations of their 
strategies for outreach and education. We urge Congress to provide a 
third year of funding, because the programs are being operated on a 3-
year cycle. Their full potential will be realized only if they run for 
the full 3-year anticipated cycle.
    LRF believes that strong partnerships will be a key feature of 
efforts to improve lymphoma treatments and provide lymphoma patients 
current information about their disease and treatment options. We 
encourage NCI to fund collaborative research ventures, and we urge CDC 
to continue its support of those private organizations that have years 
of experience in patient education. Those who receive a diagnosis of 
lymphoma face difficult choices, and we must work together to improve 
their options and their lives.
                                 ______
                                 
               Prepared Statement of Mended Hearts, Inc.

    I am Robert H. Gelenter, a volunteer for the Mended Hearts, Inc., a 
national heart disease patient support group with more than 289 
chapters across the United States and in Canada. We visit patients in 
approximately 460 hospitals throughout the United States. I have been 
appointed by the group to assist in this lobbying effort--a volunteer 
position.
    More than 29 years ago, I was diagnosed with a rare heart disease. 
After having severe chest pains and trouble breathing for more than two 
years, I was diagnosed with hypertrophic cardiomyopathy (HCM), a 
disease in which the heart enlarges. The heart muscle eventually 
thickens so much that it can't pump blood effectively. The heart muscle 
does not grow in the normal parallel patterns. Rather it grows in a 
haphazard manner. It affects men and women of all ages. When you read 
of a young athlete who has dropped dead on an athletic field the odds 
are very good that he or she had HCM. HCM is one of the leading causes 
of sudden cardiac death. There is no cure for this disease.
    Medication may work and there is a surgical procedure that may 
alleviate the pain. If that doesn't work a patient may need a heart 
transplant, yet spare organs are scarce. The doctor who made my 
diagnosis was trained at the National Heart, Lung, and Blood Institute 
of the National Institutes of Health.
    Initially, I received several medications, which allowed me to 
engage in most activities. But, some activities, such as walking up 
hills, caused severe shortness of breath and severe chest pains. But, 
generally I could function normally. However, after about 11 years, the 
discomfort was increasing, and it became apparent that I was in serious 
trouble. I could not walk 60 feet without having to stop to catch my 
breath. Sometimes the pain was so great that I would almost double over 
in the middle of the street. My wife told me that my face would become 
gray. The perspiration would pour off my body. If I was lucky I could 
find a chair to sit on. The quality of my life had deteriorated so 
drastically that I knew I needed some treatment.
    In 1988, I went to Georgetown University Medical Center for an 
angiogram--the gold standard for diagnosing heart problems. The 
cardiologist who performed the angiogram told me that he had bad news 
and worse news. The bad news was that I had a 95 percent blockage in my 
left anterior descending heart artery--the so-called ``widow makers 
spot.'' The worse news was that I had a major chance of having a severe 
heart attack with a less than a 5 percent chance of surviving that 
heart attack because of the hypertrophic cardiomyopathy. At this point, 
my wife was quietly crying and I was perspiring profusely. Since 
Georgetown University Medical Center did not have the expertise to 
operate on me, they called the NIH to see if they would accept me as a 
patient. I was sent home pending notice from the NIH.
    The NIH accepted me. After entering the National Heart, Lung, and 
Blood Institute on February 6, I was operated on February 11, 1988. No 
matter how trite the expression--that was the first day of the rest of 
my life. The surgery, considered drastic and rare as it is, is still 
the gold standard throughout the world for the treatment of 
hypertrophic cardiomyopathy. The Murrow Procedure, in honor of the 
innovator, was developed and improved at the NIH.
    Although this surgery is no longer performed at the National Heart, 
Lung, and Blood Institute, there is another experimental ongoing 
protocol in which the same effect is being attempted by using alcohol 
to deaden the excessive heart tissue.
    I am on medication for the rest of my life. My condition is 
progressive. Ten years ago, I was fitted with a pacemaker to insure 
that my heart beats at the correct rate. I am 100 percent dependent on 
this pacemaker. Without the pacemaker, there are times when my normal 
heart beat is so slow that I would die.
    I am eternally grateful to the physicians funded by the National 
Heart, Lung, and Blood Institute, particularly to Dr. MacIntosh and his 
staff, for the gift of life. Because of this marvelous research 
supported by the NHLBI, I have lived 17 years pain free. I have seen 
two children graduate from college and three grandchildren born, I have 
shared these years with a wonderful wife. I have been able to work at 
my profession--attorney at law.
    I have had the gift of life restored to me. To express my gratitude 
for that gift, I visit patients recovering from heart episodes at two 
hospitals, Washington Hospital Center and Washington Adventist 
Hospital.
    If this tale of woe is not enough about 2\1/2\ years ago, I 
suddenly began to have mini strokes. I experienced four episodes within 
7 months. The last episode was just a year ago. Medication now seems to 
have the incidents under control.
    I respectfully ask for the fiscal year 2006 appropriation in the 
following amounts:
  --NIH $30 billion, including $2.3 billion for heart research and $341 
        million for stroke;
  --NHLBI $3.1, including $1.9 billion for heart and stroke-related 
        research; and
  --NINDS $1.6 billion, including $183 million for stroke research.
    My experience is proof that the research supported by the National 
Heart, Lung, and Blood Institute and the National Institute for 
Neurological Disorders and Stroke benefits not just the patients at the 
NIH Clinical Center, but throughout the United States. The benefits go 
worldwide as well.
    Heart attack, stroke and other cardiovascular diseases remain the 
No. 1 killer and major cause of disability of men and women in the 
United States. Nearly 40 percent of people who die in the United States 
die from cardiovascular diseases. Last year, nearly 930,000 Americans 
died from cardiovascular diseases, including more than 150,000 under 
the age of 65.
    Thank you for your support of National Heart, Lung, and Blood 
Institute's heart research and the National Institute for Neurological 
Disorders and Stroke's stroke research.
                                 ______
                                 
   Prepared Statement of the March of Dimes Birth Defects Foundation

    The 3 million volunteers and 1,400 staff members of the March of 
Dimes appreciate the opportunity to submit the Foundation's federal 
funding recommendations for fiscal year 2006. The March of Dimes is a 
national voluntary health agency founded in 1938 by President Franklin 
D. Roosevelt to prevent polio. Today, the Foundation works to improve 
the health of mothers, infants, and children by preventing birth 
defects and infant mortality through research, community services, 
education, and advocacy. The March of Dimes is a unique partnership of 
scientists, clinicians, parents, members of the business community, and 
other volunteers affiliated with 52 chapters in every state, the 
District of Columbia and Puerto Rico.
    The volunteers and staff of the March of Dimes are deeply concerned 
that the funding recommendations and levels in the President's Budget 
and congressional Budget Resolutions will not be sufficient to support 
biomedical research and services needed to improve the health of 
children and families. For instance, the infant mortality rate 
increased in 2002 for the first time since 1958. Increases in deaths 
due to premature birth, birth defects, and maternal complications 
during pregnancy account for most of the increase. In our judgment, the 
funding increases recommended below are fully justified and would have 
an immediate positive impact on this disturbing trend and thereby lead 
to an overall improvement in the health of the nation's children.

                     NATIONAL INSTITUTES OF HEALTH

    The March of Dimes joins the larger research community in 
recommending a 6 percent increase in funding for the National 
Institutes of Health (NIH), bringing total federal support to just over 
$30 billion. The Administration's fiscal year 2006 budget proposal is 
insufficient to keep up with inflation and certainly will not sustain 
the necessary investment in medical research.
National Institute for Child Health and Human Development
    The mission of the National Institute for Child Health and Human 
Development (NICHD) is closely aligned with that of the March of Dimes. 
According to the National Center for Health Statistics (NCHS), in 2002, 
more than 480,000 babies were born prematurely in the United States--1 
in 8 births. Premature birth accounts for nearly 24 percent of deaths 
in the first month of life. Those babies that survive are more likely 
than full-term infants to face serious multiple health problems 
including cerebral palsy, mental retardation, chronic lung disease, and 
vision and hearing loss. Preterm labor can happen to any pregnant woman 
and the causes of nearly half of all preterm births are unknown.
    The NICHD has made a major commitment to understanding and 
preventing premature birth but additional funding is desperately 
needed. The March of Dimes recommends a 10 percent increase for NICHD 
in fiscal year 2006 and an increase of at least $100 million over the 
next five years to boost prematurity-related research. This increase 
should be devoted to a comprehensive biomedical research program to 
study preterm delivery etiology, prevention, and treatment regimens.
    Last year, the NCHS reported the first increase in the U.S. infant 
mortality rate since 1958 and 61 percent of this increase was due to an 
increase in the birth of premature and low birth weight babies. An 
analysis of Agency for Healthcare Research and Quality data conducted 
by the March of Dimes Perinatal Data Center estimated that the total 
national hospital bill for premature babies was $15.5 billion in 2002. 
The financial burden of prematurity is expected to continue to worsen 
until prevention of preterm births is better understood and clinical 
interventions are developed.
    The NICHD began a major new initiative involving genomic and 
proteomic research into the causes of premature birth in an effort to 
accelerate knowledge in the mechanisms responsible for premature birth. 
The RFA soliciting proposals for the establishment of a collaborative 
network for premature birth research was issued in June 2004. The NICHD 
received an excellent response to this RFA and had anticipated the 
start of this initiative in early 2005. The March of Dimes is very 
disturbed that the start of this crucial initiative has now been 
delayed because of insufficient funding.
     Unfortunately, even a 10 percent increase in funding would not be 
enough to enable NICHD to begin implementing the National Children's 
Study (NCS) of environmental and genetic influences on child health and 
development. The goal of the NCS is to pinpoint causes and find 
prevention and treatment strategies for many of today's childhood 
diseases and disorders. The planning of the study is largely complete 
and the study is ready to be piloted. On November 16, 2004, the Request 
for Proposals for the first NCS study sites and the data-coordinating 
center were published. But beyond the pilot sites, the future of this 
important study is uncertain without additional funding. The cost of 
this study is dwarfed by the $269 billion annual cost of treating the 
diseases and conditions it is designed to address, including preterm 
birth, according to NICHD estimates. If study findings were to result 
in only a 1 percent reduction in those costs, the expense of the entire 
study could be recovered in a single year. The March of Dimes believes 
it would be shortsighted to put off this study.

            CENTERS FOR DISEASE CONTROL AND PREVENTION (CDC)

Division of Reproductive Health
    The National Center for Chronic Disease Prevention and Health 
Promotion, Division of Reproductive Health works to promote optimal 
reproductive and infant health, but does not have the resources it 
requires to study the growing problem of preterm birth. Therefore, the 
March of Dimes recommends a $20 million increase in fiscal year 2006 to 
expand research related to preterm birth. Worsening rates of preterm 
birth require an expanded, comprehensive prevention research agenda to 
identify the causes, risk factors, and to find clinical interventions 
that are effective in preventing preterm labor. In particular, two 
specific programs should receive additional funding: (1) the Pregnancy 
Risk Assessment Monitoring System and (2) epidemiological research.
    The Pregnancy Risk Assessment Monitoring System (PRAMS) is a state-
specific, population based surveillance system designed to identify and 
monitor maternal behaviors and experiences before, during, and after 
pregnancy. Currently, CDC supports cooperative agreements with 29 
states and New York City through which PRAMS monitors approximately 62 
percent of all U.S. births. Data collected through PRAMS is used by 
researchers and policy makers to increase understanding of adverse 
pregnancy outcomes, to develop maternal and child health programs, and 
to incorporate the most up to date research findings into standards of 
practice. The March of Dimes recommends an increase of $5 million to 
expand PRAMS so that CDC can develop better national estimates on 
behavioral as well as demographic risk factors for preterm birth.
    Epidemiological research conducted at CDC is vital to reducing the 
incidence of preterm birth. The March of Dimes recommends an increase 
of $15 million to expand research on the prevention of preterm delivery 
for women at risk, focusing especially on factors contributing to 
higher rates of preterm delivery among African-American women. 
Increasing CDC's activities related to identifying the causes of 
preterm birth would improve early detection of women at risk for 
preterm labor and lead to new interventions for those at greatest risk.
National Center on Birth Defects and Developmental Disabilities
    Created by the Children's Health Act of 2000 (Public Law 106-310), 
the National Center on Birth Defects and Developmental Disabilities 
(NCBDDD) conducts programs to protect and improve the health of 
children and adults by preventing birth defects and developmental 
disabilities; promoting optimal child development and health and 
wellness among children and adults with disabilities. The March of 
Dimes recommends at least $135 million in fiscal year 2006 funding for 
the NCBDDD.
    Of particular interest to the March of Dimes is the NCBDDD's 
comprehensive birth defects program that includes surveillance, 
research and prevention activities. Of the four million babies born 
each year in the United States, 3 percent are born with one or more 
birth defects. Birth defects are the leading cause of infant mortality, 
accounting for more than 20 percent of all infant deaths. Children with 
birth defects who survive often experience lifelong physical and mental 
disabilities. In fact, birth defects contribute substantially to the 
nation's health care costs. According to CDC, the medical treatments 
and supportive services for the 17 most common birth defects exceed $8 
billion annually. A modest increase of $6 million in funding for 
surveillance, research and prevention activities is a vital step to 
making progress in reducing the incidence of birth defects.
    NCBDDD provides funding to states to develop, implement, and/or 
expand community-based birth defects surveillance systems, programs to 
prevent birth defects, and activities to improve access to health 
services for children with birth defects. Surveillance is vitally 
important for the early detection of new birth defects, for discovering 
the causes of birth defects and for evaluating the effectiveness of 
prevention programs. Due to lack of funds, CDC will only fund 15 states 
in fiscal year 2005, down from 28 states in fiscal year 2004. 
Additional resources are needed to fund all states seeking CDC 
assistance and increase assistance to states already receiving funds.
    The National Birth Defects Prevention Study is the largest case-
control study of birth defects ever conducted. This CDC-funded study is 
being carried out by 9 regional Centers for Birth Defects Research and 
Prevention located in Arkansas, California, Georgia, Iowa, 
Massachusetts, New York, North Carolina, Texas, and Utah. These centers 
obtain data and identify cases for inclusion in the study and conduct 
epidemiological research on birth defects. With adequate funding, this 
study has the potential to dramatically increase understanding of the 
causes of birth defects and is already providing information for 
improvement of programs to prevent birth defects. The causes of nearly 
70 percent of birth defects are still unknown.
    The centers study possible genetic and environmental causes, the 
use of certain medications during pregnancy, maternal diet, and vitamin 
use. This study provides the nation a continuing source of information 
on potential causes of birth defects. For example, in response to a 
scientific study showing a possible association between the drug 
loratadine, also sold under the brand name Claritin, and the 
occurrence of the birth defect hypospadias the National Birth Defects 
Prevention Study conducted a review that showed no association. This 
information is useful to physicians as well as women who take 
loratadine and become pregnant.
    The NCBDDD also is conducting a national public and health 
professions education campaign designed to increase the number of women 
taking folic acid. CDC estimates that up to 70 percent of neural tube 
defects (NTDs), serious birth defects of the brain and spinal cord 
including anencephaly and spina bifida, could be prevented if all women 
of childbearing age consume 400 micrograms of folic acid daily, 
beginning before pregnancy. Since fortification of U.S. enriched grain 
products with folic acid, the rate of NTDs in the United States has 
decreased by 26 percent. It is critical that CDC increase its campaign 
efforts to educate every woman of childbearing age and their providers 
about the importance of folic acid to further reduce the rates. 
Therefore, the March of Dimes recommends an appropriation of at least 
$4 million in fiscal year 2006 for the Folic Acid Education Campaign.

                        ADDITIONAL CDC PROGRAMS

National Immunization Program
    If we are to meet the Healthy People 2010 goals of vaccinating 90 
percent of children and adults, CDC, states and localities will need 
sufficient resources to ensure that those in need of immunizations 
receive them. Annually, 4 million children should be immunized against 
12 preventable diseases before the age of two. Yet, nearly 25 percent 
of two-year-olds have not received all of the recommended vaccine 
doses. CDC's National Immunization Program provides grants to 64 state, 
local, and territorial public health agencies to reduce the incidence 
of disability and death resulting from vaccine preventable diseases. To 
move the nation closer to the goal of vaccinating at least 90 percent 
of children and adults, the March of Dimes urges the Subcommittee to 
continue its longstanding policy of ensuring that federal vaccine 
programs are adequately funded. For fiscal year 2006, the March of 
Dimes recommends an overall increase of $232 million in order to ensure 
that the National Immunization Program has the resources it needs to 
account for vaccine price increases, introduction of new vaccines, and 
to facilitate implementation of recommendations developed by the 
Institute of Medicine.

Polio Eradication
    April 12, 2005 marks the 50th anniversary of the declaration that 
the poliovirus vaccine developed by Dr. Jonas Salk was safe and 
effective. The March of Dimes, formerly known as the National 
Foundation for Infantile Paralysis, funded Dr. Salk's groundbreaking 
work on the polio vaccine. Although eradication of polio in the United 
States resulted in a shift in the Foundation's focus to a new set of 
challenges pertaining to children's health, the March of Dimes 
continues to support completing the task of polio eradication 
worldwide. Global polio eradication will save lives and reduce 
unnecessary health-related costs. The March of Dimes supports a funding 
level of $106.4 million for CDC's fiscal year 2006 global polio 
eradication activities. With polio epidemics now confined to only 6 
countries (Nigeria, India, Pakistan, Niger, Egypt and Afghanistan), it 
is important that the U.S. government maintain its commitment to 
completion of the worldwide eradication initiative.

National Center for Health Statistics
    The Foundation also supports the vital work of the National Center 
for Health Statistics (NCHS), which provides data essential for 
research and programmatic initiatives. For example, the National Vital 
Statistics System is a major source of information on the utilization 
of prenatal care and on adverse birth outcomes such as preterm births, 
low birthweight, and infant mortality. Increased funding would allow 
CDC to modernize this system using web-based technology that 
facilitates rapid compilation of accurate and comprehensive data 
obtained from health professionals and facilities. This information is 
needed to track trends in birth outcomes and to support birth defects 
registries. Data from NCHS' surveys are also important to identify 
emerging trends and optimal uses of existing program resources. 
Additional resources would also enable CDC to continue the National 
Survey of Family Growth, which provides essential information on 
factors affecting birth outcomes.

          HEALTH RESOURCES AND SERVICES ADMINISTRATION (HRSA)

Newborn Screening
    Newborn screening is a vital public health activity used to 
identify genetic, metabolic, hormonal and/or functional conditions in 
newborns that left untreated can cause disability, mental retardation, 
and even death. Although nearly all babies born in the United States 
are screened for some genetic birth defects, the number and quality of 
these tests varies from state to state. The March of Dimes recommends 
that every baby born in the United States receive, at a minimum, 
screening for a core set of 29 metabolic disorders including hearing 
deficiencies.
    In fiscal year 2005, the Congress provided funding for 
implementation of Title XXVI of the Children's Health Act of 2000. This 
program is designed to strengthen state newborn screening programs; to 
improve states' ability to develop, evaluate, and acquire innovative 
testing technologies; and to establish and improve programs to provide 
screening, counseling, testing and special services for newborns and 
children at risk for heritable disorders. Unfortunately, funding for 
Title XXVI activities was obtained by diverting a portion of the SPRANS 
section of the Maternal and Child Health Block Grant which the 
Administration proposes to level fund in fiscal year 2006. The March of 
Dimes recommends that Title XXVI of the Children's Health Act be funded 
at a level of $25 million in new money to support HRSA's work with 
states to improve newborn screening programs across the nation.

Maternal and Child Health Block Grant
    Federal funding for Title V of the Social Security Act, the 
Maternal and Child Health (MCH) Block Grant, has failed to keep pace 
with increased demand for services. Although the Block Grant provides 
funds for a growing number of community-based programs such as home 
visiting, respite care for children with special health care needs and 
``wrap around'' services for pregnant women and children enrolled in 
Medicaid and SCHIP, the funding level for the Grant has not increased 
since fiscal year 2002. In order for maternal and child health programs 
to continue to shoulder responsibility for additional services, it must 
be adequately funded. The March of Dimes recommends fully funding Title 
V at the authorized level of $850 million.
    Thank you for the opportunity to testify on the federally supported 
programs of highest priority to the March of Dimes. The Foundation's 
staff and volunteers look forward to working with Members of the 
Subcommittee to improve the health of mothers, infants and children.

       MARCH OF DIMES FISCAL YEAR 2006 FEDERAL FUNDING PRIORITIES
                        [In millions of dollars]
------------------------------------------------------------------------
                                                         March of Dimes
               Program                Fiscal year 2005  fiscal year 2006
                                           funding        recommendation
------------------------------------------------------------------------
National Institutes of Health                 28,444.0          30,150.0
 (Total)............................
    National Institute of Child                1,270.0           1,397.0
     Health & Human Development.....
    National Human Genome Research               489.0             518.0
     Institute......................
    National Center on Minority                  196.0             208.0
     Health and Disparities.........
Centers for Disease Control and                8,034.0           8,650.0
 Prevention (Total).................
    Center on Birth Defects and                  125.0             135.0
     DevelopmentalDisabilities......
    Birth Defects Research &                      14.0              20.0
     Surveillance...................
    Folic Acid Education Campaign...               2.0               4.0
    Immunization....................             479.0             711.0
    Polio Eradication...............             106.4             106.4
    Safe Motherhood/Infant Health                 45.0              65.0
     (NCCDPHP)......................
    Pregnancy Risk Assessment                      7.3              12.3
     Monitoring System..............
    Prevention Research (Preterm                   1.5              16.5
     Birth).........................
    National Center for Health                   109.0             118.0
     Statistics.....................
Health Resources and Services                  6,809.0           7,500.0
 Administration (Total).............
    Maternal and Child Health Block              730.0             850.0
     Grant..........................
    Newborn Screening...............               2.0              25.0
    Newborn Hearing Screening.......              10.0              10.0
    Consolidated (Community) Health            1,734.0           2,038.0
     Centers........................
    Healthy Start...................             102.0             102.0
Agency for Healthcare Research and               319.0             440.0
 Quality............................
------------------------------------------------------------------------

                                 ______
                                 
   Prepared Statement of the National Coalition for Heart and Stroke 
                                Research

    My name is Jack Owen Wood. I solicit your support for more 
aggressive federal funding for research into prevention and treatment 
of the sister diseases, stroke and heart disease. Strokes and heart 
attacks are occurring at an alarming rate.
    I am representing the National Coalition for Heart and Stroke 
Research. The coalition consists of 18 national organizations 
representing more than 5 million volunteers and members united in 
support for increased funding for heart and stroke research. Members of 
the Coalition include:
    American Academy of Neurology; American Academy of Physical 
Medicine and Rehabilitation; American Association of Neurological 
Surgeons; American College of Cardiology American College of Chest 
Physicians; American Heart Association; American Neurological 
Association; American Stroke Association; American Vascular Association 
Foundation; Association of Black Cardiologists; Children's 
Cardiomyopathy Foundation, Inc.; Citizens for Public Action on Blood 
Pressure and Cholesterol, Inc.; Congress of Neurological Surgeons; 
Heart Rhythm Society; Mended Hearts, Inc.; National Stroke Association; 
Society of Interventional Radiology; and Society for Vascular Surgery.
    I will deal primarily with one man's personal experience with 
stroke and its functional and financial costs--my own. I have only the 
use of my right arm.
    I was born in 1937, raised in Vicksburg, Mississippi, earned an 
engineering degree at Mississippi State University and currently reside 
in Port Orchard, Washington. I worked for the Boeing Company in 
Seattle, am a former Director of the Washington State Energy Office, 
served as Director of Cost and Revenue Analysis and as the Forcasting 
Manager for a major Northwest Area Natural Gas Utility until May 1, 
1995.
    On May 1, 1995, at the age of 57, I was stricken and severely 
disabled by my stroke. Two years later I experienced a triple bypass 
heart operation. You might say I've ``been there and done that'' for 
both major cardiovascular diseases. So you see, I am an expert.
    Years ago I was offered an exciting and rewarding volunteer 
opportunity. I was asked to lead the ``Jack Wood Stroke Victor Tour'' 
for the American Heart Association.
    The Jack Wood Stroke Victor Tour was a 5-state lobbying tour. 
Through it I tried to meet personally with every Northwest 
Congressional representative on his or her home turf (in Alaska, Idaho, 
Montana, Oregon and Washington). In each meeting I was joined by local 
people, stroke survivors and their families and medical professionals. 
I told my story and asked them to join the Congressional Heart and 
Stroke Coalition and to support increased federal funding for heart and 
stroke research.
    I am proud to say I traveled to 18 communities and met personally 
with 28 members of our delegation or their staff.
    One of the most powerful memories for me was the frequency in which 
Members of Congress or staff members related their personal experience 
with stroke. One member I spoke to lost both parents to stroke. I 
suspect many of you have stories too.
    I realize your interest is greater than the physical impact of my 
stroke. Your concern must include the financial impact, not only to me, 
but also on our country from increased health care costs and lost 
productivity and its many implications.
    I have confronted the difficult and painful task of calculating 
that cost to me. Besides being a man whose stroke took his ability to 
pick up and play with his grandchildren and his livelihood, I remain a 
statistician at heart. I could not resist calculating and telling that 
part of my story. But please remember my story is not dissimilar to 
that of many of the 5.4 million stroke survivors in the United States. 
Many of whom were stricken in their prime earning years. Who in a 
matter of moments, seemingly without warning, are transformed from a 
contributor and provider to a receiver and patient.
    Allow me to highlight three figures that I feel sum up my data and 
should be important to you. I estimate that my stroke at age 57:
  --Reduced my earnings before retirement age 65 by more than $600,000.
  --Subsequently, the cost to the federal government in lost income and 
        other taxes, early Medicare payments and Social Security 
        disability payments is more than $320,000.
  --My HMO spent approximately $150,000 to respond to and treat my 
        stroke.
  --One man, over $1 million.
    About 700,000 Americans will suffer a stroke this year costing this 
nation an estimated $57 billion in medical expenses and lost 
productivity.
    Earlier I described a stroke as occurring seemingly without 
warning. All too often as in my case, people either don't know or 
ignore the signs of a stroke, even one in progress. When my stroke hit 
I denied it. It took me two days after my stroke to acknowledge it and 
seek help. Because of research into new treatments, we now have tPA, a 
clot-busting drug, which if administered within 3 hours of the onset of 
stroke symptoms, can dramatically reduce the damage of clot-based 
strokes. Had I recognized and acknowledged my stroke, gone to a 
hospital with a neurologist on staff and had there been tPA, the impact 
of my stroke most certainly would have been lessened.
    What is even more painful to me is that my impending stroke could 
have been detected. Unfortunately, we need to create easier and less 
expensive diagnostic techniques so that effective diagnostics can be 
given routinely as part of regular health exams. And they must be 
covered through insurance.
    I am not asking for your sympathy. Instead, please think of me as 
two of the ghosts in the famous Dickens' story. Please don't 
misunderstand, I am not casting you as Scrooge. See me as both the 
ghosts of things past and things yet to be. I too am here to tell you, 
the future, which I represent, needs not be. It is largely up to you.
    I hope my story and estimate of the cost of my stroke convinces you 
that taking on stroke and heart disease through increased research, 
leading to better prevention, diagnosis and treatment is fiscally 
responsible. The human and financial costs are astronomical.
    Thank you for your past support of research.
                                 ______
                                 
        Prepared Statement of the National Hemophilia Foundation

    Thank you for the opportunity for the National Hemophilia 
Foundation (NHF) to submit testimony to the Chairman and Members of the 
Appropriations Subcommittee on Labor, Health and Human Services, 
Education, and Related Agencies. NHF is a national voluntary health 
organization dedicated to improving the health and welfare of people 
affected by bleeding and clotting disorders, including hemophilia, 
women's bleeding disorders, and thrombophilia.

                               BACKGROUND

    Bleeding and clotting disorders are caused by genetic defects in 
the body's blood coagulation system, usually a missing protein that 
prevents or slows down blood clotting, or sometimes causes excessive 
clotting. There are several types of bleeding disorders. The most 
recognized bleeding disorder is hemophilia, a predominantly male 
disorder affecting approximately 20,000 individuals in the United 
States. The most common bleeding disorder is von Willebrand disease, 
which affects between one to two percent of the U.S. population. 
Thrombophilia, a blood clotting disorder effecting 2 million people 
each year, puts both men and women at risk of developing dangerous 
blood clotting in veins and arteries. These clots can obstruct the 
blood flow through the vessels causing pain and swelling of the tissue 
in the area and can lead to permanent tissue damage as well as death.

                        PREVENTION AND TREATMENT

Centers for Disease Control and Prevention
    The national network of hemophilia treatment centers (HTCs) created 
by Congress in 1974 remains essential to ensuring that comprehensive 
and specialized care is available for persons with bleeding and 
clotting disorders. The HTC role has expanded dramatically over the 
last three decades, evolving with the needs of the hemophilia and 
bleeding disorders community to provide coordinated care, blood safety 
surveillance, prevention, and improved disease management. This 
expansion also has included outreach and treatment for women with 
bleeding disorders and persons with thrombophilia.
    These programs, carried out by the Hereditary Blood Disorders 
Program in the National Center for Birth Defects and Developmental 
Disabilities at the Centers for Disease Control and Prevention (CDC), 
have demonstrated significant reductions in mortality and morbidity. 
More than 75 percent of the hemophilia community participates in one of 
the 140 centers that comprise the HTC network and more than 10,000 
women receive care at a HTC. Despite this dramatic growth in support 
and services, HTC funding has not increased in the last 10 years. 
Support for an increase has been identified in Congress, and 
Congressman Tom Price (R-GA) and many of his colleagues have sponsored 
a letter of support encouraging the Committee to allocate an additional 
$7 million for HTC funding. NHF urges the Committee's strong support 
for this additional funding to ensure HTCs can carry out needed 
education, prevention, blood safety, surveillance, and outreach 
programs with the bleeding and clotting disorders community.
Health Resources and Services Administration
    HTCs also receive needed funding as a special project of regional 
and national significance within the Maternal and Child Health Bureau 
(MCHB) Block Grant set-aside. MCHB funds are utilized by HTCs to cover 
the non-reimbursable costs of providing on-going nursing, prevention, 
dental, and rehabilitative services and support. MCHB funding for HTCs 
has remained steady for the past 20 years, resulting in eroded 
resources over time. MCHB funds for the HTC disease management network 
are essential to meeting the needs of the bleeding and clotting 
disorders community. NHF urges the Committee to maintain funding 
support for the HTCs through MCHB.

                          HEMOPHILIA RESEARCH

Bleeding and Clotting Disorders Research
    NHF is appreciative of the Committee's continued commitment to 
research. The strengthened research funding provided by the Committee 
to the National Institutes of Health has brought about rapid advances 
in science. Within NIH, the National Heart, Lung, and Blood Institute 
(NHLBI) has taken the lead on advancing research on bleeding and 
clotting disorders and the complications of these disorders. NHF is 
particularly appreciative of NHLBI's collaborative research program 
with the Foundation to support research on improved and novel therapies 
for treating these disorders and, like the Institute, has been 
overwhelmed by the scientific community's positive response to this 
approach. NHF encourages the Committee to increase its funding support 
for NHLBI such that valuable initiatives like the collaborative 
research program can be sustained.

Hepatitis C Virus
    HCV continues to severely impact the hemophilia and bleeding 
disorders community. As a result of their dependence on blood-based 
products, the hemophilia and bleeding disorders community has been 
severely affected by HIV and hepatitis. More than 80 percent of people 
with hemophilia born before 1992 have the Hepatitis C Virus (HCV). 
Today, nearly half of all persons with hemophilia have HCV. NHF has 
been grateful for the support of the Committee in encouraging continued 
partnerships between NHF and the National Institute of Allergy and 
Infectious Disease (NIAID) to address the importance of developing and 
advancing research initiatives for addressing HCV within the bleeding 
disorders community. NHF requests that NIAID continue to work with the 
Foundation's medical and scientific leadership and develop a report by 
March 31, 2006 on HCV research strategies that are being pursued within 
the bleeding disorders community.
    Over the last 20 years, the National Cancer Institute (NCI) has 
collected samples from patients with hemophilia infected with HIV and 
HCV through the Multi-Center Hemophilia Cohort Study. This cohort 
offers a rich database for improving the understanding of HCV and has 
served as the basis of significant peer reviewed findings. NHF 
understands that NCI has decided to no longer fund further research 
studies of the cohort. NHF requests the Committee's support in urging 
NCI to ensure the samples obtained through this cohort are preserved 
and accessible for future research. NHF also requests a report on 
possible future research opportunities provided by the cohort samples.
    The National Institute of Diabetes and Digestive and Kidney 
Diseases (NIDDK) has played a significant role in advancing and 
coordinating NIH's HCV research activities. With the high incidence of 
HCV within the bleeding disorders community, it is critical to further 
investigate and understand treatment options and advancements. NHF 
urges the Committee's support for NHF to work with NIDDK in developing 
and advancing research initiatives to address HCV within the bleeding 
disorders community.

                            RECOMMENDATIONS

    We are grateful for the Committee's support of bleeding and 
clotting disorders research, prevention, treatment, and outreach 
initiatives. For fiscal year 2006, we urge the Committee to:
  --Strengthen funding support for hemophilia and bleeding and clotting 
        disorders prevention and treatment programs by providing an 
        additional $7 million for the HTC network through CDC's 
        Hereditary Blood Disorders Program.
  --Provide continued support for the HTC network through MCHB.
  --Maintain support at NHLBI for research on improved and novel 
        therapies for bleeding and clotting disorders.
  --Provide support for continued collaboration between NHF and NIAID 
        in developing and advancing research initiatives for addressing 
        HCV within the bleeding disorders community.
  --Preserve NCI samples obtained through the Multi-Center Hemophilia 
        Cohort Study and ensure their accessibility for future research 
        initiatives.
  --Provide support for NIDDK to work with NHF in addressing HCV within 
        the bleeding disorders community.
    Thank you for the opportunity to provide this statement to the 
Committee.
                                 ______
                                 
     Prepared Statement of the National Multiple Sclerosis Society

    Mr. Chairman and distinguished members of the Subcommittee, we 
appreciate the opportunity to submit written testimony on behalf of the 
National Multiple Sclerosis Society. The Society was founded in 1946. 
Since its inception, the Society's highest priority has been to support 
research aimed at finding the cause of MS, better treatments, and a 
cure. In 2005, the National MS Society will spend over $35 million on 
MS research supporting over 350 MS investigations. By the end of 2005, 
the Society cumulatively will have expended some $460 million since 
awarding its first three grants in 1947. This represents the largest 
privately funded program of basic, clinical, and applied research and 
training related to MS in the world.
    The federal government must continue its vital role in furthering 
the scientific understanding of MS. To this end, the Society supports 
the following:
  --That the National Institutes of Health (NIH), in partnership with 
        the Society, invest additional funds to identify and 
        characterize MS susceptibility genes and bring additional 
        research focus to the primary progressive form of MS.
  --That NIH, in collaboration with the Society, other MS 
        organizations, and other federal research agencies, undertake a 
        study of the incidence, demographics and environmental factors 
        that may contribute to disease onset.
  --The National Institute on Disability and Rehabilitation Research 
        (NIDRR) in the Department of Education fund one additional 
        Medical Rehabilitation Research and Training Center for MS and 
        take steps to stimulate individual research projects.
  --That Congress increase fiscal year 2006 NIH funding by 6 percent.
    Multiple sclerosis is a chronic, unpredictable and often disabling 
disease of the central nervous system. Symptoms range from numbness in 
the limbs, to loss of vision, memory deficits, and in some instances 
partial or total paralysis. The progress, severity and specific 
symptoms of MS in any one person can vary and cannot yet be predicted, 
but advances in research and treatment are giving hope to those 
affected by the disease.
    The federal investment in the National Institutes of Health (NIH) 
and the National Institute on Disability and Rehabilitation Research 
(NIDRR) plays a major role in MS research. At the NIH, there are two 
institutes that conduct or fund the majority of MS research: the 
National Institute of Neurological Disorders and Stroke (NINDS) which 
funds 75 percent, and the National Institute of Allergy and Infectious 
Diseases (NIAID) which funds about 20 percent. The National Center for 
Medical Rehabilitation Research (NCMRR--a unit of the National 
Institute of Child Health and Human Development) also funds a small 
amount of MS research specifically targeting rehabilitation issues. In 
addition to the NIH, the NIDRR through the Department of Education 
invests in MS research.
    For fiscal year 2005 and fiscal year 2006, it is estimated that NIH 
expenditures on MS research will be approximately $102 and 103 million, 
respectively. For fiscal year 2005 and fiscal year 2006 NIDRR 
expenditures on MS research will be approximately $1.5 million per year 
out of a total budget of $140 million per year. While this demonstrates 
one measure of the federal investment in MS research, this amount pales 
in comparison with the annual direct and indirect disease cost--
approximately $23 billion for all people with MS in the United 
States.\1\
---------------------------------------------------------------------------
    \1\ Based on a 1994 Duke University study, indexed for 2004 by the 
National MS Society, the average annual cost of MS is estimated at 
$57,500 per person due to lost wages, increased medical care and other 
expenses. Nationwide, there are an estimated 400,000 people with MS.
---------------------------------------------------------------------------
    The National MS Society has had a long and productive relationship 
with the NIH, particularly with NINDS. Our founder Sylvia Lawry helped 
spearhead the legislation that established NINDS in 1950. The Society 
has been pleased to work with the NINDS on many areas of mutual 
interest and we hope to strengthen our partnership with NINDS and 
expand our relationships with other federal funders of MS research in 
the coming year.
    The Society supports the NIH Neuroscience Blueprint, announced last 
Fall, that reinforces intra-collaboration and information-sharing among 
14 NIH Institutes that conduct or support research on the brain and 
nervous system. The Blueprint should accelerate the translation of 
basic neuroscience discoveries into better ways to treat and prevent 
nervous system disease.

            INVESTING IN RESEARCH PRIORITIES RELEVANT TO MS

    The National MS Society will continue to pursue research 
opportunities with NIH and NIDRR in priority areas that are key to 
furthering the understanding of MS. We continue to monitor NIH's 
progress in expanding its commitment to MS research as suggested by 
Congress.
    In 2004, as part of our NIH advocacy efforts, the Society had the 
following congressional ``report language'' added by the House and 
Senate Appropriations Conference Committee as an instruction to NIH in 
the fiscal year 2004 omnibus appropriations package:

    ``The conferees urge NINDS to increase its overall investment in 
multiple sclerosis (MS) research. Special emphasis on imaging, 
biological markers and clinical trials for new therapeutics should be 
areas of high priority. The conferees are pleased to note the 
development of a joint symposium on MS genetics sponsored by NINDS and 
the National MS Society, and encourage the Institute to take a more 
active role at the NIH in furthering MS genetics research by developing 
collaborative strategies with the National Human Genome Research 
Institute and other relevant NIH institutes. The conferees request that 
NIH report back to Congress no later than September 30, 2004 with 
progress in its efforts to expand its commitment to multiple sclerosis. 
The conferees also are pleased to note a major success in past years in 
the creation of a joint collaborative research program in ``gender and 
immunity'' between the National Institute on Allergy and Infectious 
Diseases (NIAID) and a major voluntary association for the disease, in 
which NINDS participates. The conferees encourage NINDS to seek similar 
collaborative activities related to MS.''

    The Society was pleased to receive a copy of the report. While the 
Society is gratified by the many intramural and extramural activities 
and progress described in the report, we are disappointed to note that 
it did not address steps that NINDS would take to expand its commitment 
MS research as requested by the committee. We urge NINDS to increase 
its commitment to MS by:
  --Partnering with the Society to invest additional resources to help 
        solve the genetic basis of MS.
  --Working with the Society to bring additional research focus to the 
        primary progressive form of MS (PPMS).
    Family studies of people with MS and their relatives, have shown 
that the risk for MS depends on relatedness to the affected individual, 
that is, a sibling has a higher risk of developing MS than a cousin. In 
no other disease have recurrence risks been so comprehensively 
catalogued in groups of biological and social relatives. A strategy is 
needed to penetrate the genetics of MS. Although the NIH and the 
National MS Society have invested independently substantial funds in MS 
genetics over the past decade, this is an area that calls for 
additional collaboration. The past few years have seen real progress in 
the development of laboratory and analytical approaches to the study of 
genetic disorders. The Society encourages the NIH to move forward with 
the Society as a true partner in identifying those DNA regions that can 
be prioritized for encoding MS susceptibility genes. The identification 
and characterization of the MS genes will help to define the basic 
etiology of the disease, to help predict the course of the disease, and 
to influence therapeutics.
    Advances in immunology have provided clinicians with powerful tools 
to better understand the underlying causes of MS, leading to new 
therapeutic advances. Although there are FDA-approved treatments for 
relapsing MS, there are no approved treatments for progressive MS. The 
primary progressive form of MS (PPMS) is characterized from the onset 
by the absence of acute attacks and instead involves a gradual clinical 
decline. Approximately 10 percent of individuals are diagnosed with 
PPMS from the onset. Clinically this form of the disease is associated 
with a lack of response to any form of immunotherapy. This leads to the 
concept that PPMS may in fact be a very different disease as compared 
to relapsing remitting MS. The Society identifies the study of 
progressive MS as an area that merits greater attention by the research 
community in order to increase our understanding of PPMS and to have 
effective therapies for this progressive form of the disease. In the 
upcoming year, the Society encourages NIH to help the Society address 
this underserved area of MS research.
    In addition to efforts at the NIH, the Society is pleased to note 
that for more than 20 years, NIDRR has funded a Medical Rehabilitation 
Research and Training Center (MRRTC) for MS. However, the institute's 
overall investment in MS research remains limited, $1.5 million in 
fiscal year 2005. The NIDRR portfolio includes only two current 
projects related to MS, the aforementioned MRRTC and a Rehabilitation 
Research and Training Center on Health and Wellness in Long Term 
Disability that is only partially focused on MS. In contrast, spinal 
cord injury, with a prevalence less than that of MS, has 39. Since the 
advent of FDA-approved MS disease-modifying treatments in 1993, persons 
with MS have had access to therapeutics which can slow the progression 
of disability. However, in order to maintain maximum levels of 
independence, persons with MS need rehabilitation to address residual 
deficits. Unfortunately, due to the limited support for MS 
rehabilitation research, we know relatively little about the efficacy 
of rehabilitative interventions in MS. We therefore urge the NIDRR to 
increase its support for MS rehabilitation research through the funding 
of at least one additional MRRTC along with initiatives to stimulate 
individual research projects.

                    THE IMPORTANCE OF COLLABORATION

    The National MS Society cannot overemphasize the importance of 
collaboration. We are pleased to see that the Roadmap Initiative--a 3-
year plan addressing key research issues throughout NIH--continues to 
develop. The National MS Society encourages NIH to continue its efforts 
to increase collaboration across institutes and to pursue collaborative 
opportunities with other organizations. As we see it, there is no other 
choice.
    An area in critical need of attention concerns data related to the 
incidence, prevalence, and distribution of MS. The last national study 
of incidence and prevalence of MS in the United States took place more 
than 30 years ago. Since that time the population of the United States 
has changed dramatically in size, composition, and distribution. 
Moreover, numerous questions have arisen concerning possible ethnic, 
geographic, and local variations in the distribution of MS. Knowledge 
concerning these distributions and possible causal factors may provide 
important information concerning the nature of MS and its triggers. 
Moreover, rational policy formulation for MS health care requires up-
to-date information concerning numbers and characteristics of persons 
with MS down to the state level. Addressing these information needs is 
beyond the resources of the Society. We therefore urge the NIH, the 
CDC/ATSDR to work with the Society and perhaps other MS organizations 
such as the Consortium of MS centers, to begin the task of 
understanding how many Americans have MS, where they reside, and what 
environmental factors may have contributed to disease onset.
    To date, the Society has been successful with NIH on jointly 
funding a major initiative on gender and immune function. In 2001, the 
Society entered into a $20 million collaborative project with NIAID and 
other NIH institutes to investigate gender effects on the immune 
function, including autoimmunity. This is important because most 
autoimmune diseases (including MS) are far more prevalent in women than 
men. The Society is co-funding six projects and will contribute up to 
$4 million to this project. We would like to engage in other 
collaborative projects, especially with NINDS.
    The Society also was pleased that in 2004 NINDS and NMSS co-
sponsored a scientific workshop on biomarkers in MS. As outcomes from 
this workshop, the Society is looking to work closely with NINDS 
projects, such as the development of collaborative and international 
efforts to identify biomarkers for MS. Such efforts would significantly 
advance our efforts to effectively diagnose and treat MS.
    The Society was also pleased that in 2004 NINDS and NMSS co-
sponsored a scientific workshop on design of clinical trials in MS. The 
tremendous increase in potential therapies for MS has created new 
challenges in the design and execution of new MS therapies. The Society 
was pleased that an outcome of this workshop was an effort to draft a 
white paper for the Food and Drug Administration on the topic of use of 
magnetic resonance imaging (MRI) as a surrogate measure in MS clinical 
trials. Acceptance of MRI as a valid surrogate measure by the FDA would 
represent a significant step forward in testing the potential MS 
therapies and bringing them to approval in a more expeditious manner.
    The Society is also currently collaborating with the National 
Center for Medical Rehabilitation Research (NCMRR--a unit of the 
National Institute of Child Health and Human Development) on an 
international workshop to foster rehabilitation research in MS. This 
workshop will address the critical need to expand the quality and 
quantity of MS rehabilitation research. It is hoped that from this 
workshop may emerge opportunities for collaborative support of research 
initiatives to advance scientific knowledge concerning MS 
rehabilitation.

           OVERALL NIH FUNDING INCREASE FOR FISCAL YEAR 2006

    The Society is concerned that NIH may face a third year of overall 
low funding increases. Furthermore, in fiscal year 2004 and fiscal year 
2005, only bioterrorism research received a healthy increase, with much 
smaller increases allocated for disease research. We fear the same may 
occur in fiscal year 2006. This is particularly disappointing after the 
fiscal year 1999-2003 funding campaign that doubled the NIH budget in 
the 5-year period.
  --We urge Congress to appropriate a 6 percent fiscal year 2005 
        funding increase for NIH.
  --While there is a need to increase our country's investment in 
        bioterrorism research, we ask Congress to balance the fiscal 
        year 2006 NIH appropriation to allow growth across all NIH 
        institutes and all areas of disease research.
    We thank the Subcommittee for this opportunity to comment and 
applaud your commitment to advancing the health and well-being of all 
Americans through investment in biomedical research.
                                 ______
                                 
             Prepared Statement of the NephCure Foundation

            SUMMARY OF RECOMMENDATIONS FOR FISCAL YEAR 2006

    1. A 6 percent increase for the National Institutes of Health and 
the National Institute of Diabetes and Digestive and Kidney Diseases 
(NIDDK).
    2. Continue to expand the NIDDK Nephrotic Syndrome (NS)/Focal 
Segmental Glomerulosclerosis (FSGS) research portfolio by aggressively 
supporting grant proposals in this area and encouraging the National 
Center for Minority Health and Health Disparities (NCMHD) to initiate 
studies into the incidence/cause of NS/FSGS in the African-American 
population.
    3. The NephCure Foundation encourages we encourage follow up to the 
scientific workshop that took place in January, 2005, sponsored by 
NIDDK, in effort to initiate grant proposals focused on achieving the 
goals developed by the workshop. The workshop examined observations and 
opportunities for improved diagnosis and therapeutic interventions for 
Glomerular disease and Focal Segmental Glomerulosclerosis (FSGS).
    Mr. Chairman, and members of the subcommittee, I am pleased to 
present testimony on behalf of the NephCure Foundation (NCF), a non-
profit organization driven by a blue-ribbon panel of respected medical 
experts and a dedicated band of patients and families working for a 
common goal--to save kidneys and lives.
    I am Ed Hearn, former Major League catcher for the 1986 World 
Series Champion New York Mets and the Kansas City Royals. My career as 
a professional athlete came to an abrupt end in 1991, due to a shoulder 
injury. Upon recuperation, I intended to return to my team. While I was 
out due to my injury, I began to experience symptoms that indicated 
kidney malfunction, and within six months, I was diagnosed with Focal 
Segmental Glomerulosclerosis (FSGS), a debilitating and degenerative 
kidney disease. Today, after three kidney transplants, the aid of a 
breathing machine at night, a $3,000 IV once a month, and $40,000 of 
medication to pay for up to 50 pills that I must swallow each day, I 
live to tell my story and to speak for those suffering from FSGS. My 
hope is that we can find the means to prevent this life-threatening 
disease from affecting our youth and from jeopardizing the normalcy of 
their lives as it has mine and many others. I remain hopeful that a 
cure for FSGS will be uncovered, but until then, our focus must be on 
prevention.

            TREATMENT TRIALS BEGINNING, BUT NO CURE IN SIGHT

    Mr. Chairman, FSGS is one of a cluster of glomerular diseases that 
attack the one million tiny filtering units contained in each human 
kidney. These filters are called nephrons and these diseases attack the 
portion of the nephron called the glomerulus, scarring and often 
destroying the irreplaceable filters. Scientists do not know why 
glomerular injury occurs and they are not sure how to stop its 
inevitable destruction of the kidney.
    When I was a teenager, doctors found protein in my urine and told 
me that some day I might have kidney trouble. I pushed it out of my 
mind, thinking that some day meant when I was an old man down the road. 
Some day came faster than anyone expected. I believe that because I was 
a highly conditioned athlete, and catchers are more conditioned than 
most athletes, my body initially masked the symptoms of FSGS. 
Consequently, I retained the facde of physical health, and I do not 
know when FSGS initially began to internally attack my body.
    My first kidney transplant lasted more than seven years until the 
FSGS returned, as it often does. I received a second kidney from my 
aunt in 2000, but my body rejected it almost immediately, and I 
received a third kidney transplant in May of 2002. My story is not 
unique; there are thousands of other people in this country who have 
had their lives disrupted due to the sudden onset of FSGS. Although 
kidney transplants have been very successful for thousands of FSGS 
patients, there are many patients of whom the body rejects the 
transplanted kidney or the FSGS comes back and attacks the transplanted 
kidney, leaving the patient with no functioning kidneys. He or she must 
then rely on daily dialysis as a means of survival.
    FSGS patients are often on several medications, which cause medical 
complications and unbearable side effects. FSGS patients, upon 
diagnosis, often take a downward plunge at a rapid rate, and it is 
extremely difficult to make a comeback. In the last four years, I have 
undergone two kidney transplants, two years of dialysis, and a six week 
course of daily radiation treatment for rapidly spreading cancer that 
was primarily the result of the high doses of immunosuppressant drugs I 
am taking for FSGS. In the last three months alone, I have had over 65 
medical appointments. As you can see, it is nearly impossible for an 
FSGS patient to live a normal life.
    We are extremely thankful that an NIDDK-funded clinical trial began 
last year to study the efficacy of the current treatments for FSGS, and 
that ancillary studies are underway to examine tissue samples of 
injured glomerulus. However, these clinical trials hold no particular 
hope for patients who suffer from FSGS.
    There are thousands of young people who are in a race against time, 
hoping for a treatment that will save their lives. The NephCure 
Foundation today raises its voice to speak for them all, asking you to 
take specific actions that will aid our quest to find the cause and the 
cure of NS/FSGS.
    First and foremost, we support a 10 percent increase for the 
National Institutes of Health and the National Institute of Diabetes 
and Digestive and Kidney Diseases (NIDDK).

                TOO LITTLE DATA ABOUT A GROWING PROBLEM

    When glomerular disease strikes, the resulting Nephrotic Syndrome 
causes loss of protein in the urine and symptoms such as edema, a 
swelling that often appears first in the face. For example, many 
physicians mistake children's puffy eyelids as an allergy symptom. 
Stories of similar misdiagnoses are common at our Foundation. With 
experts projecting a substantial increase in Nephrotic Syndrome in the 
coming years, there is a clear need to educate pediatricians and family 
physicians about glomerular disease and its symptoms.
    The NephCure Foundation has numerous education programs underway, 
including patient education seminars; the most recent of which took 
place in March 2004. The next patient education seminar will take place 
in Washington, DC in May 2005. News of our most recent activities can 
be found on our web site at www.nephcure.org. However, our efforts 
alone are not enough.
    NIDDK launched a major federal outreach program early in 2002--the 
National Kidney Disease Education Program--we seek your support in 
urging NIDDK to assure that glomerular disease receives high visibility 
in this important program.

            GLOMERULAR DISEASE STRIKES MINORITY POPULATIONS

    Nephrologists tell us that glomerular diseases such as FSGS affect 
a disproportionate number of African-Americans and, according to NIDDK, 
``the worst prognosis is observed in African-American children.'' 
NephCure officials have described this situation in a meeting with Dr. 
John Ruffin, director of the National Center for Minority Health and 
Health Disparities (NCMHD).
    As the NCMHD becomes fully operational and plans programs, our 
Foundation will continue to work with the Center to encourage the 
creation of programs to study the high incidence of glomerular disease 
within the African-American population.
    We ask the Committee to join with us in expanding the NS/FSGS 
research portfolio by requesting that the National Center for Minority 
Health and Health Disparities seize the opportunity to establish 
research into the phenomenon of glomerular disease within the African 
American community.

                      MORE BASIC SCIENCE IS NEEDED

    The current FSGS clinical trials which follow an estimated 400 
patients over a three year period, are limited, according to the RFA, 
to examining the ``impact of immunomodulatory therapy on proteinuria.'' 
While the trials may lead to safer or more efficient care for children 
with FSGS, no one is suggesting that they will bring us closer to 
finding the cause and cure. Science has yet to prove that FSGS is an 
immune-mediated disease.
    Scientists tell us that much more needs to be done in the area of 
basic science, beginning with collection of tissue and fluid samples 
from a large number of patients on which years of important scientific 
research can be founded. NephCure is collaborating with the NIH in a 
major way to work for such progress.
    The National Institute of Diabetes and Digestive and Kidney 
Diseases (NIDDK) has agreed to match, dollar-for-dollar, funds raised 
by NephCure that will allow researchers to obtain DNA samples from 
hundreds of FSGS patients in upcoming clinical trials. The NIDDK will 
match up to $300,000 raised by NephCure for a combined total of 
$600,000. These trials are an ancillary study in conjunction with the 
first-ever national medication trials of FSGS treatment that may 
possibly lead to better understanding of the more common Nephrotic 
Syndrome, which can be a precursor to FSGS.
    We encourage follow up to the Scientific Workshop that took place 
in January, 2005, sponsored by NIDDK, in effort to initiate grant 
proposals focused on achieving the goals developed by the workshop. The 
workshop examined observations and opportunities for improved diagnosis 
and therapeutic interventions for glomerular disease and Focal 
Segmental Glomerulosclerosis (FSGS). This goal is consistent with the 
NIH Roadmap to Research initiative developed by NIH Director, Dr. Elias 
Zerhouni.
    The workshop united basic science and clinical investigators, FSGS 
patients, physician researchers, nephrologists from around the world 
and anyone with an interest in treatment for glomerular diseases to 
share and collaborate upon advances, challenges and research potential 
of these debilitating diseases. We must use the conference as a 
stepping stone and build upon the information collectively gathered to 
determine the resources needed to carry out these opportunities and 
challenges. The workshop/conference gave hope to the thousands of young 
people whose kidneys and lives are threatened by this terrible disease, 
and it gave honor to their heroic stories.
    We anticipate the potential for a Program Announcement and the 
potential for a Special Emphasis Program Announcement resulting from 
the conference or some other traditional mechanism to generate grant 
proposals. These mechanisms to encourage investigator initiated grant 
proposals should help to continue to expand the NS/FSGS portfolio at 
NIH.
    Mr. Chairman, as you know, patient support and advocacy groups such 
as the NephCure Foundation work closely with medical research 
organizations. They share a mutual understanding that unless major 
research efforts are undertaken, advances and improvements in the 
health of patients will not occur. Every year, the NephCure Foundation 
participates in advocating increased funding for the NIH and NIDDK. We 
want to reiterate how deeply grateful we are for your leadership and 
that of the subcommittee on medical research matters, which means so 
much for the health of the people in our nation.
    I will be pleased to answer any questions you may have.
                                 ______
                                 
      Prepared Statement of the National Prostate Cancer Coalition

    Mr. Chairman and members of the Committee, thank you for the 
opportunity to share my remarks. The National Prostate Cancer Coalition 
(NPCC) was founded in 1996 to combat a long overlooked killer of men. I 
came to NPCC in 2001, having just recently been impacted by the disease 
myself. In 2000, my grandfather was diagnosed with prostate cancer. 
Having served his country so valiantly in World War II, he was now 
facing a new battle. Luckily, because of early detection through the 
prostate specific antigen (PSA) test and the digital rectal exam (DRE), 
the disease was caught early and, following a radical prostatectomy, he 
is now cancer free. But there are many men who are not so lucky. That's 
why you must adequately fund prostate cancer research for veterans like 
my grandfather, families like mine, and men all over America.
    Under the leadership of this committee we have seen prostate cancer 
research funding increase by nearly $300 million since in the last 6 
years. While we have come a long way, there is still much work to be 
done. For the second year since the founding of NPCC, prostate cancer 
deaths will continue to increase in 2005. More than 30,000 lives will 
be lost to the disease. Occurrences of prostate cancer are increasing 
as well, to over 230,000 men this year. While cases continue to grow, 
more men are catching the disease in its early stages, when the disease 
is most treatable, by early detection through screening.
    NPCC would like to offer its gratitude on behalf of the 2 million 
American men with prostate cancer for the support this committee has 
offered in the past. The recent doubling of the National Institutes of 
Health's (NIH) budget has helped prostate cancer research funding to 
expand to record levels, but we must ensure this funding is used 
appropriately. To that end, your committee was instrumental in 
requiring NIH and the National Cancer Institute (NCI) to submit a 
professional judgment budget for fiscal year 2003-fiscal year 2008 to 
outline the agencies' plans for prostate cancer research. You have also 
been influential in requesting a fiscal budget for that document, which 
was Congress received passed the April 2004 deadline. The budget 
requested lacked connectivity to the previous plan and made no 
references to goals or priorities. While no one disputes the historic 
importance of doubling, we ask you to encourage NIH and NCI to 
coordinate with each agency to put forward a comprehensive and cohesive 
plan that brings us closer to eradicating cancer. Additionally, we 
respectfully request your oversight to ensure this funding is producing 
results for prostate cancer.
    Huge sums of taxpayers' money have been allocated to NIH over the 
years and it is now time to examine what this windfall has produced. 
Therefore, we request that you to ensure that NIH to submits the yearly 
update on its prostate cancer research portfolio that reflects its 
progress according to the fiscal year 2003-fiscal year 2008 
professional judgment budget that was requested in fiscal year 2005.
    We are entering an exciting time in biomedical research. The recent 
Food and Drug Administration's approval of Avastin has opened a new 
door for cancer research. Avastin targets cancerous cells by blocking 
their blood supply, an idea that had been previously dismissed by the 
medical community as ``absurd''. The drug not only signals a turning 
point in changing cancer into a manageable, chronic disease but also 
demonstrates the value of seeking out novel and innovative research. We 
must encourage this kind of research at NIH, including assessing the 
value of stem cell research which has shown promise in research for 
neurological diseases, diabetes, and cancer.
    Developing a new approach to research is a priority for NPCC. The 
Prostate Cancer Research Funders Conference, first convened in 2001 and 
then revitalized last fall, seeks to formulate a collaborative, public-
private approach to seek out new ways of attacking the problem of 
prostate cancer. Originally co-convened by NPCC and NCI, participants 
now also include the Department of Defense, the Veterans Health 
Administration, the Centers for Disease Control and Prevention, the 
Food and Drug Administration, Canadian and British government agencies, 
private foundations/organizations and representatives from industry. 
Members of the Conference have come together to form a partnership that 
allows them to focus on key objectives and to address commonly 
recognized barriers in research. This could propel research forward 
significantly. As the Conference continues, we ask that the Committee 
make its functionality part of its oversight commitments to prostate 
cancer research. Currently, federal agencies participate voluntarily, 
but they can opt in or out based on the tenure of executive leadership 
and its time-limited decisions. For the conference to be successful 
federal agencies engaged in the prostate cancer research should, in our 
opinion, be required to participate, and we ask for your leadership to 
make that happen.
    Recognizing the importance of cutting edge research initiatives and 
collaborative research efforts, NIH director Elias Zerhouni, M.D. 
recently unveiled the NIH Roadmap. The Roadmap's strategy mirrors that 
of the Funders Conference, specifically by seeking out new approaches 
and ideas and stimulating cross-institutional and cross-center research 
for all NIH driven biomedical research. Believing, we think correctly, 
that the synergies in the Roadmap can achieve outcomes that are greater 
than those any one Institute or Center can achieve, we support its 
efforts to advance key biomedical research initiatives at an 
exponential rate. NPCC applauds the Roadmap and pledges its support to 
take biomedical research in new directions.
    As NIH and NCI look to redefine and increase the efficiencies of 
their research programs, Congress must equip them with the resources 
they need to implement new initiatives. Unprecedented increases in NIH 
and NCI's funding over the last 6 years have created opportunities 
never before available. We must take advantage of these achievements, 
to not do so will not only harm cancer patients everywhere but is, 
quite simply, poor business sense.
    NPCC was heartened when the President stated 2 years ago that ``in 
order to win the war against cancer, we must fund the war against 
cancer,'' but we are very concerned by recent reports suggesting the 
Administration's budget for fiscal year 2006 will propose a cut in the 
overall budget of the National Institutes of Health and other critical 
programs. Such a cut would be a major reversal in our nation's 
commitment to the fight against cancer.
    Societies for Experimental Biology (FASEB) have stated if increases 
are held to 2 percent-3 percent the grant funding rate at NIH will drop 
below 30 percent and approximately 500 fewer grants would be funded. To 
allow NIH and NCI to adequately continue to fund promising grants and 
research first realized during the budget doubling, Congress must 
appropriate at least ($30.1 billion) in funding for these agencies in 
fiscal year 2006. That may seem like a large number, but in reality, it 
is only a small fraction of the estimated $189 billion that cancer 
alone costs this nation yearly.
    Increasing NIH's budget by 8.5 percent would also allow NCI to 
dedicate more than $400 million to prostate cancer research in fiscal 
year 2005. Last year, NCI received only a 3.3 percent increase in 
funding over the previous year's level. Yet, with previously committed 
grant awards and outlays to the NIH Roadmap, NCI is ``effectively 
operating with a budget that is $2.7 million less than last year's 
operating budget (NCI Cancer Bulletin 2/3/04).'' The President's fiscal 
year 2006 budget allocates over $4.8 billion to NCI, is much less than 
the fiscal year 2005 increase. This level will mean even tougher 
choices in awarding grants at NCI. We believe that Congress should 
fully fund the NCI Director's Bypass Budget at $6.2 billion, which 
would rapidly accelerate the nations' fight against all cancers.
    As you know, education and early detection through screening are 
the catalyst to beating prostate cancer. Right now, the PSA blood test 
and DRE physical exam are the best measures for detecting prostate 
cancer early. We ask the Committee to allocate at least $20 million to 
the Center for Disease Control and Prevention's (CDC) prostate cancer 
awareness program. We also encourage the Committee to work with CDC to 
address our concern that the agency places insufficient value on these 
screening tools.
    Thank you again for the leadership you have shown in advancing 
biomedical and, more specifically, prostate cancer research. Under your 
leadership, the nation's war on cancer has reached heights never before 
realized. We look forward to continuing to work with you and the 
members of the Committee until a cure is found.
                                 ______
                                 
          Prepared Statement of the National Sleep Foundation

              SUMMARY OF FISCAL YEAR 2006 RECOMMENDATIONS

  --Provide a 6 percent increase for fiscal year 2006 to the National 
        Institutes of Health (NIH) and a proportional increase of 6 
        percent to the individual institutes and centers, specifically, 
        the National Heart, Lung, and Blood Institute (NHLBI).
  --Urge the National Center on Sleep Disorders Research (NCSDR) to 
        partner with other federal agencies, such as the Centers for 
        Disease Control and Prevention (CDC), and voluntary health 
        organizations, such as the National Sleep Foundation (NSF), to 
        develop a collaborative sleep education and public awareness 
        initiative.
  --Urge the United States Surgeon General to issue a Surgeon General's 
        Report on Sleep and Sleep Disorders.
    Mr. Chairman and members of the Subcommittee, thank you for 
allowing me to present testimony on behalf of the National Sleep 
Foundation or NSF. I am Dr. James Walsh, Chairman of the Board of 
Directors of the National Sleep Foundation, Executive Director of the 
Sleep Medicine and Research Center affiliated with St. John's Mercy and 
St. Luke's Hospitals, and Clinical Professor of Psychiatry at St. Louis 
University. The National Sleep Foundation is an independent, non-profit 
organization whose mission is to enhance public awareness about the 
need for sufficient restorative sleep, to increase the detection and 
treatment of sleep disorders, to foster sleep-related programs and 
policy for the betterment of public health, and to promote sleep 
research. We work with thousands of sleep medicine and other health 
care professionals, researchers, patients, drowsy driving victims 
throughout the country, and collaborate with many government and 
private organizations with the goal of preventing health and safety 
problems related to sleep deprivation and untreated sleep disorders.
    Sleep problems, whether in the form of medical disorders, or 
related to work schedules and a 24/7 lifestyle, are ubiquitous in our 
society. At least 40 million Americans suffer from sleep disorders; yet 
more than 60 percent of adults have never been asked about the quality 
of their sleep by a physician, and fewer than 20 percent have ever 
initiated such a discussion. Millions of individuals struggle to stay 
alert at school, on the job, and on the road. The latest estimates from 
the National Highway Transportation Safety Administration and the 
Federal Motor Carriers Safety Administration implicate fatigue and 
sleepiness in 1.1 million crashes annually. A recent study in Sweden 
showed that sleep disturbances are the second greatest risk factor for 
fatal accidents at work. Sleep apnea, a sleep-related breathing 
disorder which affects at least 5 percent of adult Americans, is 
closely related to some of America's most pressing health problems, 
such as obesity, hypertension, heart failure, and diabetes. Chronic 
insomnia, experienced by 10 percent of our population is a strong risk 
factor for depression and other widespread mental health conditions. 
Sleep disorders, sleep deprivation, and excessive daytime sleepiness 
add approximately $15 billion to our national health care bill each 
year. The National Center on Sleep Disorders Research estimates that by 
the year 2050, sleep problems will affect as many as 100 million 
Americans.
    Sleep science has clearly demonstrated the importance of sleep to 
health and well being, yet research studies continue to show that 
millions of Americans are at risk for the serious health, safety 
consequences of sleep disorders and inadequate sleep. Moreover their 
quality of life suffers and the personal and national economic impact 
is staggering. NSF believes that every American needs to understand 
that good health includes healthy sleep, just as it includes regular 
exercise and balanced nutrition. We must elevate sleep to the top of 
the national health agenda. We need your help to make this happen.
    Our biggest challenge is bridging the gap between the outstanding 
scientific advances we have seen in recent years and the level of 
knowledge about sleep held by health care practitioners, educators, 
employers, and the general public. This gap in knowledge is being 
discussed as I present this testimony today, by hundreds of concerned 
professionals. Yesterday and today, the National Center on Sleep 
Disorders Research, the National Heart, Lung, and Blood Institute, and 
the Trans-NIH Sleep Research Coordinating Committee are sponsoring a 
translational conference entitled ``Frontiers of Knowledge in Sleep and 
Sleep Disorders: Opportunities for Improving Health and Quality of 
Life.'' This two-day program has assembled health care providers, 
public health and education experts, policy makers, patient advocacy 
organizations, sleep medicine specialists, and other stakeholders. It 
is intended to address how information about sleep and sleep disorders 
can translate into improvements in public health and safety using cost-
effective, comprehensive, and broadly-applied strategies for education, 
societal change, and improved sleep-related health care.
    This conference is an important step in translating research into 
practice and into a broad-based public health message. The development 
of a sleep education and public awareness initiative would serve as a 
key legacy for the sleep translational conference and provide a forum 
for dissemination of the outcomes of the sleep translational 
conference. The National Sleep Foundation has been leading the way on 
public education regarding sleep and sleep disorders since it was 
founded in 1990. NSF and others have done a lot, but so much more needs 
to be done in order to educate the public and actually change behavior. 
Because resources are limited and the challenges great, we think 
creative and new partnerships need to be created to address the issues 
that are before us.
    In the fiscal year 2005 appropriations bill, Congress recommended 
that The National Center on Sleep Disorders Research partner with other 
federal agencies, such as the Centers for Disease Control and 
Prevention, and voluntary health organizations, such as NSF, to develop 
an ongoing, inclusive mechanism for public and professional awareness 
on sleep, sleep disorders, and the consequences of fatigue. Such a 
collaboration between federal agencies and voluntary health 
organizations will create an opportunity for dramatically improving 
public health and safety as well as the quality of life for millions, 
if not all, Americans. Beginning steps have been taken to establish 
this collaboration, but continued support from the National Center on 
Sleep Disorders Research and the Centers for Disease Control and 
Prevention is critical.
    Last year, at a National Institutes of Health sleep conference, the 
U.S. Surgeon General reported on the profound impact that chronic sleep 
loss and untreated sleep disorders have on all Americans. He emphasized 
that dissemination of the existing body of medical knowledge and 
implementation of expanded clinical practice guidelines regarding sleep 
and sleep disorders are critically important.
    Conferences and workshops held by the Surgeon General involve 
educating the public, advocating for effective disease prevention and 
health promotion programs and activities, and providing a highly 
recognized symbol of national commitment to protecting and improving 
the public's health.
    We believe that it is time that the federal government helps 
promote sleep as a public health concern through the development of a 
Surgeon General's report on sleep and sleep disorders in order to call 
attention to the importance of sleep and develop strategies to protect 
and advance the health and safety of the nation.
    Thank you again for the opportunity to present testimony to this 
Subcommittee.
                                 ______
                                 
          Prepared Statement of the NTM Info & Research, Inc.

                        SPECIFIC RECOMMENDATIONS

    NTMIR requests an allocation in the budget to enable NIH, (NIAID & 
NHLBI) to advance diagnostics and treatments for patients suffering 
from pulmonary Nontuberculous Mycobacteria (NTM) disease.
    NTMIR requests funds to facilitate and increase multi-centered 
trials to advance the effectiveness of treatments and to develop new 
treatments.
    NTMIR recommends that CDC/NCHS engage in surveillance to better 
understand the incidence of NTM disease and assess the level of 
awareness within the medical community.
    NTMIR supports the American Lung Association's request for an 
increase of $77 million in funding to combat TB so that we avoid the 
risk of a rise in incidence that complacency can yield.
    NTMIR supports the request of the Ad Hoc Group for Medical Research 
Funding for a $30 billion appropriation for NIH in fiscal 2006.

     WHAT IS PULMONARY NONTUBERCULOUS MYCOBACTERIAL DISEASE (NTM)?

    NTM is an infectious disease considered to be of environmental 
origin as these bacteria are ubiquitous in the water and soil that 
surround us. Although NTM is diagnosed by the same basic test used to 
diagnose traditional tuberculosis (TB), it is significantly more 
difficult to treat. NTM progressively diminishes lung capacity, with 
all the attendant negative consequences in life.
    Unfortunately, even though TB has a significantly high profile, NTM 
does not because education and awareness have been lacking. 
Furthermore, there is growing evidence that NTM is many times more 
prevalent than TB in the United States. For example, the State of 
Florida Infectious Disease Laboratory reports receiving over twice as 
many specimens that are NTM positive for every one that is positive for 
TB. Even more startling, the Agency for Health Care Administration for 
Florida hospital patient discharges shows almost 9 times the number of 
patients with the primary diagnosis of NTM versus those with TB.
    Doctors in leading treating facilities are reporting that even 
though NTM is not reportable, they are seeing more NTM patients than TB 
patients. A current report from Toronto, Ontario indicates that the 
prevalence may be six times higher than the older data we have in the 
United States.
    NTM is not limited to one strain and has certain strains that are 
inherently resistant to drug therapy, and in all cases multiple drugs 
are required on a lengthy to permanent basis. A significant number of 
patients require short to long term intravenous medication and this is 
a particular hardship for the elderly because Medicare does not cover 
in-home therapy. Medicare recipients must be hospitalized one to three 
times a week driving treatment costs significantly higher than in 
alternate settings.

                      NTM INFO & RESEARCH (NTMIR)

    NTMIR was founded through a partnership of concerned patients and 
interested physicians who see increasing numbers of people affected by 
this devastating disease. NTMIR was created to expand professional 
awareness, diagnosis and treatment, facilitate research and provide 
patient support. Our mission is a public/private partnership to advance 
the science and the outcomes for countless patients with NTM disease.
    NTMIR has already demonstrated a track record of success since it 
commenced its activities just two years ago. These include, successful 
implementation of the NTMInfo.com website and online support group, 
patient education throughout the country through the replication of an 
NTM information pamphlet, initiating professional education and Grand 
Round lectures to increase professional education both for specialists 
and family physicians, establishment of a partnership of cooperation 
with public health in the State of Florida and with the American Lung 
Association of Florida. Our most recent effort resulted in agreement 
between a major pharmaceutical company, the FDA and a division of HRSA 
to provide an urgently needed drug for patients who could not otherwise 
obtain it, some of whom might have died without it.
    We anticipate that these efforts will serve as models in other 
states and at the federal level.
     fern r. leitman, patient & director, ntm info & research, inc.
    Fern Leitman is a patient who has severe pulmonary NTM disease that 
has required ongoing medical therapy since 1996. Nonetheless, in 
addition to serving as vice president of Philip Leitman, Inc. where she 
is responsible for asset and acquisition evaluation, she is co-founder 
of the NTM website and NTM Info & Research, Inc.
    Since becoming ill, Fern has dedicated many hours each week to 
communicating with patients from around the United States to help them 
understand how they help themselves to battle NTM disease by being an 
active participant in their own treatment and care. In spite of living 
with devastating and chronic illness, Fern Leitman is committed to 
helping others to live a full life by enhancing the role that NTM Info 
& Research can play in bringing patients, physicians, and government 
organizations to a partnership that will raise awareness and actively 
pursue treatment options to improve the quality of life of those 
suffering with NTM.

                       STATEMENT OF FERN LEITMAN

    Thank you for the opportunity to submit a statement on behalf of 
NTM Info & Research and all the patients suffering with pulmonary NTM 
disease. NTM is an infectious disease that challenges treating 
physicians. Lung transplantation is usually not an option because 
immune suppressants complicate treatment.
    Before NTM struck and caused me to be very ill, I was extremely 
driven, highly competitive and very independent. I spent much of my 
life in sales and was the first woman to sell cars in Florida. I was a 
partner in a New York based garment manufacturing business and I 
survived that without a scratch. I enjoy being extremely active but 
life with nontuberculous mycobacterial disease (NTM) is really tough 
and debilitating.
    This disease has taken away my drive and endurance, one activity at 
a time. It is insidious, frightening, and misunderstood. Many patients 
have told us that they can no longer function because they are so short 
of breath. Others can no longer work and many are hospitalized 
repeatedly.
    The symptoms and the tests to diagnose NTM are much like those for 
TB. Unfortunately, it is much harder to treat. I am witness to the fact 
that after almost nine years of drug therapy I am still not well and 
have been told I will likely require lifelong drug therapy including IV 
medicines.
    Not enough is done because most doctors don't look for this 
disease. When NTM infected my lungs, I coughed continuously and was 
fatigued. I had a low-grade fever for years but never looked ill; I had 
repeated bouts of pneumonia, coughed up blood, and it took 10 years for 
a diagnosis. We hear the same story from other patients. Unfortunately, 
it was too late to repair the damage because the middle portion of my 
left lung was destroyed and there were areas where the tissue had been 
destroyed throughout both lungs. Many others are suffering with NTM and 
most don't even know it yet because, sadly, they haven't been 
diagnosed. Please help them.

          PHILIP LEITMAN, PRESIDENT, NTM INFO & RESEARCH, INC.

    Philip Leitman co-founded NTM Info & Research when his wife Fern 
became ill with severe pulmonary NTM disease. Fern and Philip began 
meeting and hearing from numerous patients who were struggling with NTM 
and had a lack of understanding about it. His personal commitment has 
drawn the support of numerous physicians, the media, as well as 
government and government organizations at various levels. Efforts that 
began by developing the website, (NTMInfo.com) are now an established 
not-for-profit seeking to enhance knowledge about NTM through 
collaborative efforts with leading institutions, government, and 
patients, as well as increased education to provide broader awareness 
and understanding of the need for timely diagnosis and effective multi-
faceted treatments.
    Mr. Leitman has an extensive background in business and 
international business. He currently is a Regional Vice-Chair of the 
Council of National Trustees of National Jewish Medical and Research 
Center, President and co-founder of NTM Info & Research, Inc., Board 
member of the American Lung Association of Florida, member of the 
Florida TB Control Coalition, and a former Board member of Senior Care 
and JVS Rehabilitation Sheltered Workshop.
    Philip Leitman is also President and CEO of Philip Leitman, Inc. He 
is active as a real estate developer in South Florida. He and his wife 
Fern live in Pinecrest, Florida, and their children and grandchildren 
live nearby.

                      STATEMENT OF PHILIP LEITMAN

    Fern's doctors say she sets a standard for wanting to survive, 
wanting to live, and wanting to function highly. I am proud to follow 
her lead. This is why!
    In September 1996, shortly after lung surgery, Fern's health 
deteriorated to the point where her doctors suggested that we call our 
children. Fern was rushed to a procedure room to put a bronchoscope 
into her lungs to see what was happening. At that moment, Fern told me 
to go back and talk to her roommate at the hospital because that woman 
had the same illness and was about to have lung surgery. Fern said, 
``Please tell her that she is not as sick and this won't happen to 
her.'' The other woman looked very much like Fern.. NTM can affect any 
one of us but for some unknown reason, it affects more women than men.
    What Fern is going through is simply not unique! There are support 
groups in New York, California, Texas, Florida, and soon in Boston. The 
NTMInfo.com website has now exceeded one million hits. A number of 
leading hospitals and a branch of the CDC are linked.
    Fern's normal morning routine starts with pulmonary therapy to 
clear her airways. Then there is a sinus wash. With breakfast, Fern 
takes five different oral drugs and IV medicines. In addition, there 
are inhaled medicines. The total time from awakening to being able to 
leave the house is usually four (4) hours.
    While tuberculosis is often known to appear in inner cities and 
immigrant populations, NTM knows no such boundaries. However, current 
epidemiologic data is not available. The latest data that we have from 
the Centers for Disease Control was collected in the 1980's and we 
urgently need newer data. Current data from the University of Toronto 
suggests that the prevalence may be six times higher than our older 
information. We have no reason to believe that Toronto is any different 
than Chicago or any other major U.S. city.
                                 ______
                                 
       Prepared Statement of the Ovarian Cancer National Alliance

    On behalf of the Ovarian Cancer National Alliance (the Alliance), I 
thank the Subcommittee for this opportunity to submit comments for the 
record regarding the Alliance's fiscal year 2006 funding 
recommendations that we believe are necessary to help reduce and 
prevent suffering from ovarian cancer. For 8 years, the Alliance has 
worked to increase awareness of ovarian cancer and advocated increased 
federal resources to support research on identifying more effective 
ovarian cancer diagnostics and treatments. While I recently joined the 
Alliance as executive director, my journey with ovarian cancer began 
with my own diagnosis 3 years ago.
    As an umbrella organization with 46 state and local groups, the 
Alliance unites the efforts of more than 500,000 grassroots activists, 
women's health advocates, and health care professionals to bring 
national attention to ovarian cancer. As part of this effort, the 
Alliance advocates sustained federal investment in the Centers for 
Disease Control and Prevention's (CDC) Ovarian Cancer Control 
Initiative. The Alliance respectfully requests that Congress provide $9 
million for the program in fiscal year 2006.

                  OVARIAN CANCER'S DEADLY STATISTICS

    According to the American Cancer Society, in 2005, more than 22,000 
American women will be diagnosed with ovarian cancer, and approximately 
16,000 will lose their lives to this terrible disease. Ovarian cancer 
is the fourth leading cause of cancer death in women. Currently, more 
than half of the women diagnosed with ovarian cancer will die within 5 
years. Among African American women, only 48 percent survive 5 years or 
more. When detected early, the 5-year survival rate increases to more 
than 90 percent, but when detected in the late stages, the 5-year 
survival rate drops to 28 percent.
    Today, it is both striking and disheartening to see that despite 
progress made in the scientific, medical and advocacy communities, 
ovarian cancer mortality rates have not significantly improved during 
the past decade, and a valid and reliable screening test--a critical 
tool for improving early diagnosis and survival rates--still does not 
yet exist for ovarian cancer. Behind the sobering statistics are the 
lost lives of our loved ones, colleagues and community members. While 
we have been waiting for the development of an effective early 
detection test--thousands of our sisters, including one-third of our 
founding board members, have lost their battle to ovarian cancer.
    I am considered one of the lucky ones. When I was diagnosed 3 years 
ago, my two cancers--ovarian and endometrial--were found to be in early 
Stage 1 when I had the best chance for surviving beyond 5 years--
something only 25 percent of women with this disease can claim. Like 
most women diagnosed in early stage ovarian cancer, my good fortune was 
not the result of my awareness of the symptoms, it was not the result 
of my awareness that I was at a higher risk, and it was not the result 
of having access to a currently non-existent early screening test. My 
good fortune was the lucky result of my perseverance with my doctor, 
and my subsequent treatment by the appropriate gynecologic oncologist 
specialist.
    I have come to work for the Alliance to ensure that other women can 
have the opportunity to be as fortunate as I have been. We cannot rely 
on luck for our survival. All women should have access to treatment by 
a specialist. All women should have access to a valid and reliable 
screening test. We must deliver new and better treatments to patients 
and the physicians and nurses who treat patients with this disease tell 
us that until we have a test, we must continue to increase awareness 
and educate women and health professionals about the signs and symptoms 
associated with this disease.

   THE OVARIAN CANCER CONTROL INITIATIVE AT THE CENTERS FOR DISEASE 
                         CONTROL AND PREVENTION

    As the statistics indicate, among the most urgent challenges in the 
ovarian cancer field are late detection and poor survival. The CDC's 
cancer program, with its strong capacity in epidemiology and excellent 
track record in public and professional education, is well positioned 
to address these problems. As the nation's leading prevention agency, 
the CDC plays an important role in translating and delivering at the 
community level what is learned from research, especially ensuring that 
those populations disproportionately affected by cancer receive the 
benefits of our nation's investment in medical research.
    Specifically, the CDC's Ovarian Cancer Control Initiative helps 
give all women the opportunity to survive ovarian cancer. Public 
awareness and education programs funded by the program make women and 
health professionals aware of the warning signs of ovarian cancer and 
examine survival trends based on care received, so they can better 
detect the cancer by identifying and understanding symptoms exhibited 
in early stages.
    In addition, the CDC has a strong tradition of partnering with 
primary care physicians to combat two key barriers to early detection--
recognition and diagnosis of the disease. Primary care physicians 
usually are the first to see women presenting with the disease. 
Increasing awareness and understanding of the signs and symptoms of 
ovarian cancer among these physicians can help improve early detection 
and survival rates.
    Prompted by efforts from leaders of the Alliance and championed by 
Representative Rosa DeLauro--with bipartisan, bicameral support--
Congress established the Ovarian Cancer Control Initiative at the CDC 
in November 1999. Congress' directive to the agency was to develop an 
appropriate public health response to ovarian cancer and conduct 
several public health activities targeted toward reducing ovarian 
cancer morbidity and mortality.
    Currently, the Ovarian Cancer Control Initiative supports several 
national program grants, including three new CDC funded state 
initiatives:
  --The Center for Health Promotion and Prevention Research at the 
        University of Texas in Houston--Funded to conduct a study 
        focusing on symptoms relating to early detection of ovarian 
        cancer and staging distinctions.
  --The School of Public Health at the University of Alabama at 
        Birmingham--Funded to conduct a study focusing on barriers to 
        early detection of ovarian cancer.
  --The North American Association of Central Cancer Registries 
        (NAACCR)--Funded to analyze and report data on ovarian cancer 
        incidence by race, and to find new ways to improve accuracy of 
        ovarian cancer incidence and mortality data among women who are 
        neither Caucasian nor African American.
  --The Department of Preventive Medicine at the University of Southern 
        California--Funded for 1 year to analyze cancer registry data 
        on borderline ovarian cancer cases in California.
  --The Oklahoma University Health Sciences Center--Funded to conduct a 
        2-year, multiple component study of women experiencing possible 
        ovarian cancer symptoms, how they seek treatment, and possible 
        barriers to their medical care.
  --Battelle Centers for Public Health and Evaluation--Funded to 
        conduct a review of medical literature on clinical management 
        of non-specific abdominal and pelvic symptoms potentially 
        suspicious of ovarian cancer in older women. The review will 
        provide the foundation for CDC funding to develop evidence-
        based guidelines for primary care providers to increase ovarian 
        cancer cases detected in early stages.
  --State tumor registries in California, Maryland, and New York--Each 
        state received funding from the National Program of Cancer 
        Registries to conduct a 3 year study to determine the 
        proportion of women who had their initial surgery performed by 
        a gynecologic oncologist and to detail aspects of the second 
        course of treatment provided.
            taking the next step in prevention and awareness
    In only 5 years, the CDC's Ovarian Cancer Control Initiative, with 
its support of studies on early detection and underserved populations, 
has made an important contribution to a better understanding and 
awareness of the disease. However, without a screening test, it is 
clear that more needs to be done. Additional funding in fiscal year 
2006 will enable the CDC to expand the reach and scope of its current 
ovarian cancer initiatives to help advance our nation's effort's to 
reduce and prevent ovarian cancer morbidity and mortality. The 
allocation of $9 million in fiscal year 2006 funding will continue the 
excellent progress being made and could expand the program's efforts to 
include:
  --Development of a risk model for ovarian cancer like the model for 
        breast cancer. This would help health care professionals 
        identify high-risk women, who then could be monitored 
        regularly. By helping health care providers to be ``on alert,'' 
        they have the information and tools they need to catch the 
        disease early and improve survival rates.
  --Conduct an education campaign targeted to high-risk women to 
        educate them about the signs and symptoms of ovarian cancer, 
        the importance of regular monitoring, and strategies for risk 
        reduction.
  --Development and implementation of a national campaign to inform 
        primary care physicians, who are usually the first to see women 
        with symptoms, about ovarian cancer.
  --Examination of the reasons why minority women have higher mortality 
        rates and development of appropriate strategies for addressing 
        this terrible health disparity.
  --Conduct an education initiative targeted to health care 
        professionals about best practices for treating the disease, 
        especially referral to a gynecologic oncologist for optimal 
        survival outcome.

             A SUSTAINED COMMITMENT TO FUND CANCER RESEARCH

    When funding stagnates or does not keep pace with inflation, 
progress in critical research programs is halted or slows 
significantly. Inadequate funding for the National Institutes of Health 
(NIH) and the National Cancer Institute (NCI) means smaller ``trickle 
down'' occurs for the lesser-known or less popular--yet terribly 
devastating--diseases like ovarian cancer. To ensure adequate funding 
for all types of cancer, particularly those most deadly and least 
understood, the Alliance joins the cancer community in asking for $30.1 
billion for NIH and $6.17 billion for NCI in fiscal year 2006.

                                SUMMARY

    The Alliance maintains a long-standing commitment to work with 
Congress, the Administration, and other policymakers and stakeholders 
to improve the survival rate from ovarian cancer through education, 
public policy, research, and communication. Please know that we 
appreciate and understand that our nation faces many challenges and 
Congress has limited resources to allocate, however, we are concerned 
that without increased funding to bolster and expand ovarian cancer 
education, awareness, and research efforts, the nation will continue to 
see growing numbers of women losing their battle with this terrible 
disease.
    On behalf of the entire ovarian cancer community--patients, family 
members, clinicians and researchers--we thank you for your leadership 
and support of federal programs that seek to reduce and prevent 
suffering from ovarian cancer. Thank you in advance for your support of 
$9 million in fiscal year 2006 funding for the CDC's Ovarian Cancer 
Control Initiative.
                                 ______
                                 
      Prepared Statement of the Pulmonary Hypertension Association

              SUMMARY OF FISCAL YEAR 2006 RECOMMENDATIONS

  --$250,000 within the Centers for Disease Control and Prevention 
        (CDC) for a pulmonary hypertension awareness and education 
        program.
  --A 6 percent increase for the National Heart, Lung and Blood 
        Institute (NHLBI) and the establishment of Pulmonary 
        Hypertension Centers of Excellence at the Institute.
  --$30 million for the Health Resources and Services Administration's 
        (HRSA) ``Gift of Life Donation Initiative.
    Mr. Chairman, thank you for the opportunity to submit testimony on 
behalf of the Pulmonary Hypertension Association.
    I am Dr. Anne Caesar, a professor of medicine at Georgetown 
University and a pulmonary hypertension patient (PH). PH is a rare 
disorder involving both the heart and the lungs. The walls of the blood 
vessels that supply the lungs thicken and often constrict, making them 
unable to carry normal amounts of blood. The heart works harder to 
compensate and eventually can't keep up. Life is threatened. Currently, 
there is no cure. Symptoms of pulmonary hypertension include shortness 
of breath with minimal exertion, fatigue, chest pain, dizzy spells and 
fainting.
    When PH occurs in the absence of a known cause, it is referred to 
as primary pulmonary hypertension (PPH). This term should not be 
construed to mean that because it has a single name it is a single 
disease. There are likely many unknown causes of PPH.
    Secondary pulmonary hypertension (SPH) means the cause of the 
disease is known. Common causes of SPH are the breathing disorders 
emphysema and bronchitis. Other less frequent causes are scleroderma, 
CREST syndrome and systemic lupus. In addition, the use of diet drugs 
can lead to the disease.
    While new treatments are available, unfortunately, PH is frequently 
misdiagnosed and often progresses to late stages by the time it is 
detected. Although PH is chronic and incurable with a poor survival 
rate, the new treatments becoming available are providing a 
significantly improved quality of life for patients. Recent data 
indicates that the length of survival is continuing to improve, with 
some patients able to manage the disorder for 20 years or longer.
    Eleven years ago, when three patients who were searching to end 
their own isolation founded this organization, there were less than 200 
diagnosed cases of this disease. It was virtually unknown among the 
general population and not well known in the medical community. They 
soon realized that this was not enough and as membership began to 
grow--driven by a newsletter written by patients and distributed by 
doctors--and as a community began to form, an 800 number support line 
was launched, support groups were established, a Scientific Advisory 
Board (SAB) was formed, a Patient's Guide to Pulmonary Hypertension was 
written, and a web site was launched.
    Today, PHA includes:
  --Over 5,000 patients, family members, and medical professionals.
  --An international network of over 100 support groups.
  --An active and growing patient telephone helpline.
  --A new and fast-growing research fund. (A cooperative agreement has 
        been signed with the National Heart, Lung, and Blood Institute 
        to jointly create and fund five, five-year, mentored clinical 
        research grants and PHA has awarded seven Young Researcher 
        Grants.)
  --A host of numerous electronic and print publications, including the 
        first medical journal devoted to pulmonary hypertension--
        published quarterly and distributed to all cardiologists, 
        pulmonologists and rheumatologists in the United States.

               CENTERS FOR DISEASE CONTROL AND PREVENTION

    PHA applauds the subcommittee for its leadership in encouraging CDC 
to initiate a professional and public PH awareness campaign. We 
continue to work with officials at the CDC to establish this important 
program which will better inform health care professionals and the 
general public about PH, its symptoms, and treatment options.
    PHA knows that Americans are dying because of a lack of awareness 
of both pulmonary hypertension and recent advances in research and 
treatments. Most particularly, this is true among underserved 
populations. These are the least likely and the least able to see the 
three and four doctors it often takes to get a correct diagnosis. We 
believe that activities proposed below need to include special focus on 
reaching underserved populations and their medical services.
    The following is a description of the specific initiatives we hope 
to launch in collaboration with CDC.
    (1) Increasing awareness and understanding of PH among primary care 
physicians is critically important, because these practitioners are 
usually the first point of contact for PH patients. If the primary care 
doctor misses the symptoms, then the chance for early diagnosis depends 
upon the intuition and persistence of the patient. They have a chance, 
if they aggressively pursue diagnosis by trained and aware specialists. 
If they are not aggressive, or if they are in a health plan that 
requires their general practitioner to prescribe the referral, they are 
more likely to go undiagnosed until it is too late to control their 
illness. To increases awareness we propose to launch the following:
  --Written and video diagnostic tools for placement on the Internet.
  --Working with state health departments and clinic administrators to 
        develop information for mailing to primary care physicians, 
        medical schools and medical centers in the United States 
        drawing their attention to the new web resources.
  --A simplified and visually attractive print version of the proper 
        diagnostic procedures, which will be targeted to primary care 
        physicians, public health clinics, medical schools, and medical 
        centers in the United States.
  --Advertising in publications general practitioners and public health 
        professionals are likely to read. The emphasis will be the 
        importance of early diagnosis and the ease of accessing 
        diagnostic tools via the Internet.
  --Improvements to an already produced CD-ROM that explains pulmonary 
        hypertension from a variety of perspectives. We would like to 
        make these available to the medical community and patients 
        through our web site on an as requested basis and at 
        conferences and through targeted mailings.
    (2) Due to the advancements in treatment for PH, it is important 
that we also focus on educating cardiologists and pulmonologists. Our 
strategies for reaching cardiovascular specialists include:
  --Expansion of the first Pulmonary Hypertension Journal focused on 
        educating a cardiologists and pulmonologists on issues related 
        to the diagnosis and treatment of the illness.
  --Placement of additional detailed information on the illness on the 
        web. The PH Journal and other publications will promote this 
        availability.
  --Expansion of the medical section of PHA's international conference 
        on pulmonary hypertension (the largest PH conference in the 
        world).
  --Expansion of PHA's Pulmonary Hypertension Resource Network. This 
        program is focused on increasing awareness and knowledge of PH 
        among nurses, respiratory therapists, technicians and 
        pharmacists through peer education.
    (3) Finally, PHA is committed to increasing PH awareness among the 
general public through the development of the following initiatives:
  --A series of 10, 15, and 30 second public service announcements on 
        PH. These PSAs will be in both audio and video form.
  --A PH media relations manual.
  --An organ donation and transplant listing Awareness Campaign 
        (unfortunately, many PH patients die before finding a suitable 
        organ donor).
  --Expansion of awareness and information activities on PHA's web 
        site.
  --Continuation of PH Awareness Month.
    PHA and CDC have engaged in an ongoing dialogue about these and 
other strategies designed to increase awareness of PH. We are grateful 
for CDC's support of a DVD focused on the diagnosis of PH. However, 
despite repeated encouragement from the subcommittee, CDC has not 
established an ongoing awareness and education initiative on this 
devastating disease. Therefore, for fiscal year 2006, we encourage you 
to provide $250,000 within CDC's Cardiovascular Disease program for the 
formal establishment of this important initiative.

                NATIONAL HEART, LUNG AND BLOOD INSTITUTE

    Mr. Chairman, PHA commends the leadership of the National Heart, 
Lung and Blood Institute (NHLBI) for its support of PH research. Three 
years ago, two separate groups of scientists funded by NHLBI 
simultaneously identified a genetic mutation associated with primary 
pulmonary hypertension.
    The two groups independently reported that defects in the BMPR2 
gene, which regulates growth and development of the lung, are 
associated with PPH. The defects in the gene lead to the abnormal 
proliferation of cells in the lung characteristic on PPH.
    Although both studies suggest that only one gene is involved in 
PPH, neither group identified the defects in BMPR2 as the sole cause of 
PPH. In addition, since many people without a known family history of 
PPH get the disease, both groups suggested that other factors may 
interfere with control of the tissue growth. Now that we have 
pinpointed a gene, we can focus on learning how it works. Hopefully, 
that information will enable researchers to devise better treatments 
and perhaps eventually a preventive therapy or cure.
    We greatly appreciate NHLBI's commitment to advancing research to 
better understand and ultimately cure this disease. Morever, we applaud 
the subcommittee's strong support of PH research at the Institute. For 
fiscal year 2006, PHA recommends a 6 percent increase for NHLBI and the 
NIH overall. In addition, PHA recommends the establishment of three 
pulmonary hypertension ``Centers of Excellence'' at NHLBI to support 
the expansion of research, training and information dissemination. 
Finally, we encourage the establishment of a PH data system and 
clearinghouse at the Institute.

                GIFT OF LIFE DONATION INITIATIVE AT HRSA

    Mr. Chairman, PHA applauds the success of the Department of Health 
and Human Services ``Gift of Life'' Donation Initiative. Currently, 
there are three drugs that PH patients can be prescribed to help 
improve the quality of life with PH. Eventually, many patients must 
move toward lung or heart and lung transplantation. PH is a difficult 
to diagnose illness and while patients often list soon after diagnosis, 
for many PH patients it is too late. This why PHA is developing the 
Bonnie's Gift Project.
    Bonnie's Gift was started in memory of Bonnie Dukart, one of PHA's 
most active and respected leaders. Bonnie was a PH patient herself. She 
battled with PH for almost 20 years until her death in 2001 following a 
double lung transplant. Prior to her death, Bonnie expressed an 
interest in the development of a program within PHA related to 
transplant information and awareness. PHA will use Bonnie's Gift as a 
way to disseminate information about PH, the importance of early 
listing, the importance of organ donation to our community and organ 
donation cards.
    PHA has entered into a partnership with the ``Gift of Life'' 
Donation Initiative to increase awareness of the importance of organ 
donation and early listing within the PH community. For fiscal year 
2006, PHA supports an appropriation of $30 million for HRSA's Gift of 
Life program.

                               CONCLUSION

    Mr. Chairman, once again thank you for the opportunity to present 
the views of the Pulmonary Hypertension Association. We look forward to 
continuing to work with you and the subcommittee to improve the lives 
of pulmonary hypertension patients. If you have any questions or would 
like additional information, please do not hesitate to contact me or 
the Pulmonary Hypertension Association's National Office.
                                 ______
                                 
         Prepared Statement of the Society of Nuclear Medicine

    The Society of Nuclear Medicine (SNM) appreciates the opportunity 
to submit written testimony for the official record regarding federal 
funding for biomedical research in fiscal year 2006.
    SNM is an international, scientific, and professional organization 
with more than 16,000 members dedicated to promoting the science, 
technology, and practical application of nuclear medicine. Over the 
last 50 years, since biomedical imaging first began, the Nuclear 
Medicine community has made groundbreaking discoveries thanks to the 
research and development that was facilitated at the National 
Institutes of Health (NIH). To that end, the Society strongly 
recommends sufficient levels of federal funding to sustain and seize 
new opportunities in biomedical research.
    The Society of Nuclear Medicine stands ready to work with 
policymakers at the local, state, and federal levels to advance 
biomedical research policies and programs that will reduce and prevent 
suffering from disease.

                       WHAT IS NUCLEAR MEDICINE?

    Nuclear Medicine is an established specialty that performs non-
invasive molecular imaging procedures to diagnose and treat diseases, 
and also to determine the effectiveness of therapeutic treatments--
whether surgical, chemical, or radiation. It contributes extensively to 
the treatments and diagnoses of patients with cancers of the brain, 
breast, blood, bone, bone marrow, liver, lungs, pancreas, thyroid, 
ovaries, and prostate. Molecular imaging continues to provide expert 
information to help doctors, technicians, and other health care 
personnel manage abnormalities of the heart, brain, and kidneys. In 
fact, recent advances in the detection and diagnosis of Alzheimer's 
disease can be attributed to Nuclear Medicine imaging procedures, 
specifically positron emission tomography (PET) scans. These advances--
which were made possible by research from nuclear medicine 
professionals--helped lead the Centers for Medicaid and Medicare 
Services (CMS) to extend Medicare coverage to include PET scans for 
some beneficiaries who suffer from Alzheimer's and other dementia-
related diseases.
    CMS Administrator Mark B. McClellan announced the coverage by 
saying: ``Together with outside experts and other agencies we examined 
the available data and determined that we ought to approve coverage for 
patients who've been worked up but whose diagnosis is uncertain.'' \1\
---------------------------------------------------------------------------
    \1\ CMS Press Release--Sept. 14, 2004--Medicare Posts Coverage 
Decision to Expand Coverage of PET Scans for Alzheimer's. http://
www.cms.hhs.gov/media/press/release.asp?Counter=1200.
---------------------------------------------------------------------------
    CMS' decision was also explained by Dr. Sean Tunis, CMS' Chief 
Medical Officer. He said: ``The available evidence supports the 
conclusion that PET scans help to evaluate patients with progressive 
symptoms of dementia, but for whom a diagnosis remains unclear despite 
a thorough standard medical evaluation. We will also support the 
conduct of additional studies that will determine the value of PET 
scans required in a broader population of Medicare beneficiaries who 
develop symptoms of dementia.''
    The effect nuclear medicine has on people is far-reaching. 
Annually, more than 16 million men, women, and children require 
noninvasive molecular/nuclear medical procedures. These safe, cost-
effective procedures include PET scans to diagnose and monitor 
treatments in cancer; cardiac stress tests that analyze heart function; 
bone scans for orthopedic injuries; and lung scans for blood clots. In 
addition, patients undergo procedures to diagnose liver and gall 
bladder functional abnormalities and to diagnose and treat 
hyperthyroidism and thyroid cancer.

                SUSTAIN AND SEIZE RESEARCH OPPORTUNITIES

    For decades, Americans and people from across the world have 
benefited from the strong federal investment in nuclear medicine and 
biomedical research at the National Institutes of Health. We can safely 
say, in the words CMS Administrator McClellan, ``the technology is 
promising.'' \2\ The Society hopes that this subcommittee will continue 
its trend of forward thinking and federally fund NIH and the National 
Institute of Biomedical Imaging and Bioengineering (NBIB) and the 
National Cancer Institute (NCI) at sufficient levels for fiscal year 
2006.
---------------------------------------------------------------------------
    \2\ CMS Press Release--Sept. 14, 2004--Medicare Posts Coverage 
Decision to Expand Coverage of PET Scans for Alzheimer's. http://
www.cms.hhs.gov/media/press/release.asp?Counter=1200.
---------------------------------------------------------------------------
    SNM is proud to join its colleagues in the public health community 
in recommending that in fiscal year 2006, NIH is funded at a level 
totaling $30.1 billion. This funding level will permit NIH to sustain 
and build upon its current research activities, which are a byproduct 
of the recent NIH budget doubling effort. Even a minimal decrease or 
slowed momentum of increased funding in NIH's budget could cause severe 
disruption in the research activities and capabilities.
    In 1946, the first successful nuclear magnetic resonance (NMR) 
experiments were performed. This led to the first nuclear magnetic 
resonance imaging (MRI) exam performed on a human being 31 years later 
in 1977. From the first MRI in 1977 to today, critical advances in 
technology have developed, allowing physicians, nuclear medicine 
technicians and other health care professionals to image in seconds 
what used to take hours, days, or even weeks. Research in biomedical 
imaging and bioengineering is progressing rapidly and recent 
technological advances have revolutionized the diagnosis and treatment 
of disease. In 2000, the National Institute of Biomedical Imaging and 
Bioengineering was created. This NIH institute, specifically focused on 
biomedical imaging and bioengineering, has made great strides in 
helping the health care community and its patients recognize and 
understand different diseases and disorders. Pancreatic 
transplantation, brain scans, improvement to epilepsy surgeries are 
just a few examples of how NIBIB research is helping diagnose and treat 
patients. In order for NIBIB to continue moving forward with its 
research, SNM requests $350 million in federal funding for fiscal year 
2006. This funding level will allow NIBIB to further its research, 
development, and application of emerging and breakthrough biomedical 
technologies that will facilitate improved disease detection, 
management, and prevention.
    In addition, SNM advocates that another arm of NIH that uses 
molecular imaging, NCI, receive sufficient funding--$5.21 billion--in 
fiscal year 2006. The American Cancer Society predicts that more than a 
million Americans will be diagnosed with cancer in 2005. We have made 
significant gains in the war on cancer, and there have been successful 
breakthroughs in diagnosing and treating this terrible disease. 
Currently PET scans are available to detect more than a dozen types of 
cancer. Cancer research is leading to new therapies that translate into 
longer survival and improved quality of life for cancer patients. 
Extraordinary advances in cancer research have resulted because of the 
strong commitment by the federal, state, and local governments in 
combating cancer. Effective prevention, early detection, and treatment 
methods for many cancers have resulted from this governmental interest, 
intervention and public education campaign. In order to continue making 
a strong case against cancer, SNM requests that the Committee allocate 
$5.21 billion in federal funds for the NCI in fiscal year 2006.

                               CONCLUSION

    As outlined above, SNM has a strong and vested interest in making 
sure that biomedical research in the United States is sufficiently 
funded. It is in everyone's best interest that the federal government 
invests the needed dollars to continue the pursuit of medical 
breakthroughs in technology and science. Without the sufficient funding 
levels--which include $30.1 billion for NIH, $350 million for NIBIB, 
and $5.21 billion for NCI--the positive effects and results of research 
and development are seriously compromised.
    SNM stands ready to work with policymakers from both sides of the 
aisle to advance biomedical research and innovation to help reduce and 
prevent suffering from disease for all Americans. Again, on behalf of 
the members of SNM, I thank you for the opportunity to submit testimony 
regarding the absolute need for increased federal funding for 
biomedical research. I am available to answer any questions you may 
have.
                                 ______
                                 
     Prepared Statement of the Spina Bifida Association of America

    On behalf of the more than 70,000 individuals and their families 
who are affected by Spina Bifida, the Spina Bifida Association of 
America (SBAA) appreciates the opportunity to submit written testimony 
for the record regarding increased funding for the National Spina 
Bifida Program and other related Spina Bifida initiatives in fiscal 
year 2006. SBAA is the national voluntary health agency working on 
behalf of people with Spina Bifida and their families through 
education, advocacy, research, and service. The Association was founded 
in 1973 to address the needs of the Spina Bifida community and today 
serves as the representative of 57 chapters serving more than 125 
communities nationwide. SBAA stands ready to work with Members of 
Congress and other stakeholders to ensure that our Nation takes all the 
steps necessary to reduce and prevent suffering from Spina Bifida.

                       BACKGROUND ON SPINA BIFIDA

    Spina Bifida is a neural tube defect (NTD) and occurs when the 
spinal cord fails to close properly during the early stages of 
pregnancy, typically within the first few weeks of pregnancy and most 
often before the mother knows that she is pregnant. Over the course of 
the pregnancy--as the fetus grows--the spinal cord is exposed to the 
amniotic fluid which becomes increasingly toxic. It is believed that 
the exposure of the spinal cord to the toxic amniotic fluid erodes the 
spine and results in Spina Bifida. There are varying forms of Spina 
Bifida, from mild--with little or no noticeable disability--to severe--
with limited movement and function. In addition, within each different 
form of Spina Bifida the effects can vary widely. Unfortunately, the 
most severe form of Spina Bifida occurs in 96 percent of children born 
with this birth defect.
    The result of this neural tube defect is that most children with it 
suffer from a host of physical, psychological, and educational 
challenges--including paralysis, developmental delay, numerous 
surgeries, and living with a shunt in their skulls, which helps to 
relieve cranial pressure associated with spinal fluid that does not 
flow properly. We are pleased to report that after decades of poor 
prognoses and short life expectancy, children with Spina Bifida are now 
living long enough to become adults with Spina Bifida. These gains in 
longevity are principally due to breakthroughs in research, combined 
with improvements generally in health care and treatment. However, with 
this extended life expectancy, our Nation and people with Spina Bifida 
now face new challenges--education, job training, independent living, 
health care for secondary conditions, aging concerns, among others. 
Despite these gains, individuals and families affected by Spina Bifida 
face many challenges--physical, emotional, and financial.
    Recent studies have shown that if all women of childbearing age 
were to consume 400 micrograms of folic acid daily prior to becoming 
pregnant and throughout the first trimester of pregnancy, the incidence 
of Spina Bifida could be reduced by up to 75 percent. However, even if 
we are successful in preventing the majority of Spina Bifida cases in 
the future, our Nation still must take steps to ensure that the tens of 
thousands of individuals living with Spina Bifida can live full, 
healthy, and productive lives. To ensure the highest quality-of-life 
possible, prevention interventions and treatment therapies must be 
identified, developed, and delivered to those in need.

                          COST OF SPINA BIFIDA

    It is important to note that the lifetime costs associated with a 
typical case of Spina Bifida--including medical care, special 
education, therapy services, and loss of earnings--are as much as $1 
million. The total societal cost of Spina Bifida is estimated to exceed 
$750 million per year, with just the Social Security Administration 
payments to individuals with Spina Bifida exceeding $82 million per 
year. Moreover, tens of millions of dollars are spent on medical care 
paid for by the Medicaid and Medicare Programs. Our Nation must do more 
to help reduce the emotional, financial, and physical toll of Spina 
Bifida on the individuals and families affected. Efforts to reduce and 
prevent suffering from Spina Bifida help to save money and save lives.
  improving quality-of-life through the national spina bifida program
    Secondary conditions associated with Spina Bifida include full or 
partial paralysis, neurological disorders, bladder and bowel control 
difficulties, learning disabilities, depression, latex allergy, 
obesity, skin breakdown, and social and sexual issues. Children with 
Spina Bifida often have learning disabilities and may have difficulty 
paying attention, expressing or understanding language, and grasping 
reading and math. Early intervention with children who experience 
learning problems can help considerably to prepare them for school. 
With appropriate, affordable, and high-quality medical, physical, and 
emotional care, most people born with Spina Bifida likely will have a 
normal or near normal life expectancy. Ensuring access to these 
services is essential to improving the quality-of-life for those born 
with this birth defect.
    SBAA has worked with Members of Congress to ensure that our Nation 
is taking all the steps possible to prevent Spina Bifida and diminish 
suffering for those living with this condition. As part of this 
comprehensive effort, SBAA collaborated with Members of Congress and 
other interested parties to secure an essential increase in fiscal year 
2005 funding for the National Spina Bifida Program at the National 
Center for Birth Defects and Developmental Disabilities (NCBDDD) at the 
Centers for Disease Control and Prevention (CDC). SBAA thanks the 
Members of the Subcommittee for their expression of support for this 
new and integral program by allocating $3.6 million in fiscal year 
2005.
    The National Spina Bifida Program works on two critical levels--to 
reduce and prevent Spina Bifida incidence and morbidity and to improve 
quality-of-life for those living with Spina Bifida. The program seeks 
to ensure that what is known by scientists is practiced and experienced 
by the 70,000 individuals and families affected by Spina Bifida. For 
example, the program helps individuals with Spina Bifida and their 
families learn how to treat and prevent secondary health problems, 
which range from learning disabilities and depression to severe 
allergies and skin problems that make life difficult for these 
individuals. All of these problems can be treated or prevented, but 
only if those affected by Spina Bifida--and their caregivers--are 
properly educated and taught what they need to know to maintain the 
highest level of health and well-being possible.
    Second, the National Spina Bifida Program offers benefits to those 
who live with Spina Bifida and their families by working to improve the 
outlook for a life challenged by this complicated birth defect--
principally identifying potentially valuable therapies from in-utero 
throughout the lifespan and making them available and accessible to 
those in need. These secondary prevention activities represent a 
tangible quality-of-life difference to the 70,000 individuals living 
with Spina Bifida. With the goal being living well with Spina Bifida, 
the secondary prevention initiatives are focused on the creation and 
implementation of strategies to improve the quality-of-life. These 
quality-of-life efforts center on reaching the general population with 
Spina Bifida, advancing treatment of Spina Bifida and its related 
conditions, and working with adolescents living with Spina Bifida to 
address their specific academic, psycho-social, and vocational needs. 
In addition, the National Spina Bifida Program will create and 
implement a comprehensive program to assist teens with Spina Bifida in 
the development of life skills for independence, self-reliance, and 
success in the world.
    SBAA advocates that the National Spina Bifida Program receive $5.5 
million in fiscal year 2006 so the NCBDDD can expand and continue to 
promote quality-of-life programs that support people with Spina Bifida 
so they can live fulfilling and productive lives. In its first three 
years, this program already has made a difference for our community and 
with additional resources it can expand its reach and provide 
additional assistance and hope to those with an affected loved one. 
Increasing funding for the National Spina Bifida Program will help 
ensure that our nation continues to mount a comprehensive effort to 
prevent and reduce suffering from Spina Bifida.

                        PREVENTING SPINA BIFIDA

    While the exact cause of Spina Bifida is unknown, over the last 
decade, medical research has confirmed a link between a woman's folate 
level before pregnancy and the occurrence of Spina Bifida. Sixty 
million women are at-risk of having a child born with Spina Bifida and 
each year approximately 3,000 pregnancies in this country are affected 
by Spina Bifida, resulting in 1,500 births. As mentioned above, 
research has found that the consumption of 400 micrograms of folic acid 
daily prior to becoming pregnant and throughout the first trimester of 
pregnancy can help reduce incidence of Spina Bifida up to 75 percent. 
There are few public health challenges that our Nation can tackle and 
conquer by three-fourths in such a straightforward fashion. However, we 
must still be concerned with addressing the 25 percent of Spina Bifida 
cases that cannot be prevented by folic acid consumption, as well as 
ensuring that all women of childbearing age--particularly those most 
at-risk for a Spina Bifida pregnancy--consume adequate amounts of folic 
acid.
    The good news is that progress has been made in convincing women of 
the importance of folic acid consumption and the need to maintain diet 
rich in folic acid. Since 1968, the CDC has led the Nation in 
monitoring birth defects and developmental disabilities, linking these 
health outcomes with maternal and/or environmental factors that 
increase risk, and identifying effective means of reducing such risks. 
Former CDC Director Jeff Koplan has stated that the agency's folic acid 
prevention campaign has reduced neural tube defect births by 20 
percent. This public health success should be celebrated, but it is 
only half of the equation as approximately 3,000 pregnancies still are 
affected by this devastating birth defect. The Nation's public 
education campaign around folic acid consumption must be enhanced and 
broadened to reach segments of the population that have yet to heed 
this call--such an investment will help ensure that as many cases of 
Spina Bifida can be prevented as possible.
    SBAA works collaboratively with CDC and other nonprofits to 
increase awareness of the benefits of folic acid, particular for those 
at elevated risk of having a baby with neural tube defects (those who 
have Spina Bifida themselves or those who have already conceived a baby 
with Spina Bifida). With additional funding in fiscal year 2006 these 
activities could be expanded to reach the broader population in need of 
these public health education, health promotion, and disease prevention 
messages. SBAA advocates that Congress provide additional funding to 
CDC to allow for a particular public health education and awareness 
focus on at-risk populations (e.g. Hispanic-Latino communities) and 
health professionals who can help disseminate information about the 
importance of folic acid consumption among women of childbearing age.
    In addition to a $5.5 million fiscal year 2006 allocation for the 
National Spina Bifida Program, SBAA supports a fiscal year 2006 
allocation of $135 million for the NCBDDD so the agency can enhance its 
programs and initiatives to prevent birth defects and developmental 
disabilities and promote health and wellness among people with 
disabilities.

        IMPROVING HEALTH CARE FOR INDIVIDUALS WITH SPINA BIFIDA

    The mission of the Agency for Healthcare Research and Quality 
(AHRQ) is to improve the outcomes and quality of health care; reduce 
its costs; improve patient safety; decrease medical errors; and broaden 
access to essential health services. The work conducted by the agency 
is vital to the evaluation of new treatments in order to ensure that 
individuals and their families living with Spina Bifida continue to 
receive the high quality health care that they need and deserve. SBAA 
recommends that AHRQ receive $440 million in fiscal year 2006 so that 
it can continue to conduct follow-up efforts to evaluate Spina Bifida 
treatments, promulgate associated standards of care, and further the 
provision of evidence-based care stemming from the outcomes of the 2003 
Spina Bifida Research Conference. A new partnership between the Centers 
for Disease Control and AHRQ to develop treatments for Spina Bifida 
brings new hope for families living with Spina Bifida.

         SUSTAIN AND SEIZE SPINA BIFIDA RESEARCH OPPORTUNITIES

    SBAA seeks to support individuals and families affected by Spina 
Bifida, maximize the prevention of Spina Bifida, and ensure that all 
babies born with Spina Bifida have the greatest chance of survival and 
the highest quality-of-life--through the lifespan. When families 
recently diagnosed with a Spina Bifida pregnancy contact SBAA, the 
organization puts them in touch with other families who have a child 
with the condition so they can learn of the joys and challenges of 
having a child with the birth defect. Unfortunately, traditionally when 
families are faced with a Spina Bifida diagnosis they have had two 
difficult options. The first is to continue the pregnancy with the 
expectation of multiple surgeries for the child after birth, uncertain 
life expectancy, and many physical and developmental challenges and 
complications. The second, unfortunately, is to terminate the 
pregnancy. Fortunately, now there may be an important and effective 
third option.
    Since the late 1990s, doctors at three U.S. hospitals--Children's 
Hospital of Philadelphia, Vanderbilt University Medical Center in 
Nashville, and the University of California at San Francisco--have been 
operating before birth on fetuses diagnosed with Spina Bifida. In 2003, 
the University of North Carolina became the fourth hospital in the 
Nation to perform the in-utero operations. By closing the spinal lesion 
early in pregnancy, physicians believe they can minimize the damage 
created by fluid leaking from the spine, as well as limit by the harm 
done due to the spinal cord's contact with the amniotic fluid. Surgeons 
have found that closing the hole in the spine in this fashion before 
birth may correct breathing problems in 15 percent of the children 
receiving the procedure and may reduce the need for a shunt to drain 
fluid from the brain by between 33 percent and 50 percent.
    To determine whether or not this new procedure is safer and more 
effective than the traditional post-birth surgery to address the 
condition, the National Institute of Child Health and Human Development 
(NICHD) is conducting a large study involving the Children's Hospital 
of Philadelphia, Vanderbilt University Medical Center, and the 
University of California at San Francisco. While these three 
institutions have undertaken preliminary studies of the in-utero 
surgery technique, the overall and long-term effectiveness of this 
approach as compared to traditional therapy remains unknown. Given the 
potential for this surgery to ameliorate many of the conditions 
associated with Spina Bifida, we must do a better job of studying and 
evaluating this procedure, educating health care providers about this 
surgery as a potential option, and making information about it 
available to more families facing a Spina Bifida pregnancy.
    Our Nation has benefited immensely from past federal investment in 
biomedical research at the National Institutes of Health (NIH). SBAA 
joins with the rest of the public health community in advocating that 
NIH receive $30.1 billion in fiscal year 2006. This funding will 
support applied and basic biomedical, psychosocial, educational, and 
rehabilitative research to improve the understanding of the etiology, 
prevention, cure and treatment of Spina Bifida and its related 
conditions. In addition, SBAA urges the NIH to explore the following as 
they relate to individuals with Spina Bifida: assistive technology, in 
utero surgery, cost of care, women's and men's health, tethered cord, 
hydrocephalus, latex allergies, and other related factors.

                               CONCLUSION

    SBAA stands ready to work with policymakers to advance policies 
that will reduce and prevent suffering from Spina Bifida. Again, we 
thank you for the opportunity to present our views on funding for 
programs that will improve the quality-of-life for the 70,000 Americans 
and their families living with Spina Bifida and stand ready to answer 
any questions you may have.
                                 ______
                                 
    Prepared Statement of the Society for Investigative Dermatology

              SUMMARY OF FISCAL YEAR 2006 RECOMMENDATIONS

    (1) A 6 percent increase for all of the National Institutes of 
Health and the National Institute of Arhtritis and Musculoskeletal and 
Skin Dieseases (NIAMS).
    (2) Encourage NIAMS to create and enhance academic and educational 
opportunities for the advancement of scientific investigation of skin 
health and dermatologic diseases.
    (3) Encourage NIAMS to sponsor further burden of skin disease 
research and epidemiology activities to investigate general and skin-
disease specific measures in order to generate data surrounding the 
incidence, prevalence, economic burden, quality of life, disability and 
handicaps attributable to these diseases.
    (4) Promote the development of NIH-supported training resources 
dedicated to attract more individuals to careers in skin disease 
research.
    Mr. Chairman, and members of the subcommittee--I am very grateful 
for this opportunity to testify on behalf of the Society for 
Investigative Dermatology. I am Dr. Kevin Cooper, Professor of 
Dermatology, Chairman and Director of the Skin Diseases Research Center 
at the Department of Dermatology at Case Western Reserve University. I 
have been a physician and investigator serving the VA for 20 years in a 
part time capacity as a component of my academic work. I also serve as 
President of the Society for Investigative Dermatology.

                               BACKGROUND

    The Society for Investigative Dermatology has over 2000 members 
worldwide dedicated to the advancement and promotion of the sciences 
relevant to skin health and disease through education, advocacy, and 
the scholarly exchange of scientific information. Members include 
scientists and physician researchers from universities, hospitals, and 
industries committed to the science of dermatology. Each member firmly 
believes that further research is critical to improved prevention, 
diagnosis, and treatment for the 3,000 different diseases of the skin, 
hair, and nails, which affect about 80 million Americans each year.
    My purpose in being here today is to emphasize the need for 
increased funding for the National Institutes of Health (NIH) and the 
National Institute of Arthritis and Musculoskeletal and Skin Diseases 
(NIAMS), and to encourage follow-up to the ``Burden of Skin Disease'' 
workshop that took place in 2002. The workshop was held with the 
intention to investigate general and skin-disease specific measures in 
order to generate data surrounding the incidence, prevalence, economic 
burden, quality of life, disability and handicaps attributable to these 
diseases.
    Good health depends on healthy skin. Much of what we see on the 
outside of the body is a reflection of a person's health inside. From 
the yellow of hepatitis, to the deep purple lesions of Kaposi's 
sarcoma--a common side effect of AIDS, from the sizeable skin lesions 
of lupus erythematosus, to the painful deformed nails which may occur 
in patients with severe arthritis and psoriasis--health disorders often 
show up first as problems on the skin's surface. Skin samples are often 
used to make genetic diagnoses of internal disorders and in the future, 
the skin may be a target for gene replacement.
    Advances in cell biology allow us to understand the life cycle of 
skin and hair-producing cells and to explain how a malfunctioning 
immune system undermines the health of the body overall and the skin, 
in particular. Furthermore, the ongoing revolution in molecular and 
cell biology, genetics, immunology, information and laser technology 
provides unprecedented opportunities for achieving advances in basic 
research and medical treatment. We are becoming rapidly more adept at 
growing skin cells in the laboratory and at producing artificial skin. 
Increasingly, laser surgery is commonly replacing more invasive and 
traditional surgical methods.
    I would like to thank you for the increase in funding the 
subcommittee provided in fiscal year 2004 for NIH overall and for 
NIAMS. This year, we recommend a 6 percent increase for the NIH budget, 
and a similar percentage increase for NIAMS, which would lead to a 
funding level of $542 million for NIAMS. As the population ages and we 
live longer, dermatologists will be asked increasingly to treat cancers 
and other skin disorders that appear more often in aged individuals. 
Dermatologists will need to find new and better ways to help prevent 
and heal common conditions of the elderly, such as bed sores. Ulcers of 
the skin alone cost $8 billion per year to diagnose and treat.
    I would also like to thank the subcommittee for the inclusion of 
the conference report language in your fiscal year 2005 bill, calling 
for further attention to the numerous research opportunities and 
developments identified during the September 2002 Burden of Skin 
Disease workshop. Further exploration into the economic and social 
costs of skin disease in the U.S. population is necessary, as an 
analysis into many related areas has not been updated since 1979. More 
data must be collected to determine the prevalence of skin diseases and 
the disabilities they inflict upon those suffering from them. The 
translation of statistical data and methodology into improved bedside 
care must be a priority.
    The costs to society for medical care and lost wages due to 
conditions of the skin, hair and nails is estimated to be in the 
billions annually. However, the costs to those suffering from these 
debilitating conditions are immeasurable: they encounter discomfort and 
pain, physical disfigurement, disability, dependency and death. Skin 
conditions affect an individual's ability to interact with others and 
compromise the self-confidence of those inflicted.

                           RESEARCH ADVANCES

    The past two decades have seen explosive growth in technology and 
in increased sophistication in our understanding of the genetic and 
cellular mechanisms underlying many skin, hair and nail disorders. One 
consequence of these findings is a radical new paradigm shift in which 
the skin is now viewed as a complex organ that is intimately responsive 
to the immune system of the body. Several distinct cell types in the 
skin actively generate, regulate and perpetuate immune responses. Other 
important new research findings include the following:
  --A gene responsible for the inherited form of basal cell carcinoma 
        has been identified and may lead to new information as to the 
        origins of skin cancer.
  --A gene for an inherited form of hair loss has been discovered.
  --A new protein that links collagen and vascular defects in 
        scleroderma has been identified.
  --Advances in the design of drug-delivery systems allow for sustained 
        release of drugs through the skin, which will most likely lead 
        to treatments that are more effective.
  --Methods to grow real and artificial skin in laboratories are used 
        to prepare skin grafts for burn victims.
    The past two decades have focused on developing evaluation 
techniques such as clinical epidemiology, biostatistics, economics, and 
the quantitative social sciences used to determine the effectiveness of 
certain procedures and whether they contribute to the quality of life 
and health of both patients and society.
    As you know, medical research organizations such as the Society for 
Investigative Dermatology work closely with patient support and 
advocacy groups. We are pleased to say for many years we have worked 
with the Coalition of Skin Diseases for Skin Disease Research. The many 
organizations that participate in the Coalition have been the best 
possible advocates for increased funding, as they understand that 
unless major research efforts are undertaken, advances in understanding 
and improvements in the health of patients will not occur. Every year, 
we participate with these organizations in advocating increased funding 
for the NIH and NIAMS. We want to reiterate how deeply grateful we are 
for your leadership and that of the subcommittee on medical research 
matters, which means so much for the health of the people in our 
nation.
    I will be pleased to answer any questions you may have.
                                 ______
                                 
 Prepared Statement of the Society for Women's Health Research and the 
                   Women's Health Research Coalition

    On the behalf of the Society for Women's Health Research and the 
Women's Health Research Coalition, we are pleased to submit testimony 
in support of increased funding for biomedical research, and more 
specifically women's health research.
    The Society is the only national non-profit women's health 
organization whose mission is to improve the health of women through 
research, education, and advocacy. Founded in 1990, the Society brought 
to national attention the need for the appropriate inclusion of women 
in major medical research studies and the need for more information 
about conditions affecting women disproportionately, predominately, or 
differently than men.
    The Coalition was created by the Society in 1999 as a way to 
strengthen our grassroots advocacy with scientists and researchers and 
clinicians from across the country who are concerned and committed to 
improving women's health research. The Coalition now has more than 620 
members from across the country, including leaders within the 
scientific community and medical researchers from many of the country's 
leading universities and medical centers, directors from various 
Centers of Excellence on Women's Health as well as leading voluntary 
health associations, and pharmaceutical and biotechnology companies.
    The Society and the Coalition are committed to advancing the health 
status of women through the discovery of new and useful scientific 
knowledge. We believe that sustained funding for the women's health 
research programs that are conducted across the federal research 
agencies is necessary if we are to accommodate the health needs of the 
population and advance the nation's research capability. We urge your 
support for all these federal agencies and programs described below 
that are working to meet these goals.

                     NATIONAL INSTITUTES OF HEALTH

    From decoding the human genome to elucidating the scientific 
components of human physiology, behavior, and disease, scientists are 
unearthing exciting new discoveries which have the potential to make 
our lives and the lives of our families longer, healthier, and safer. 
The National Institutes of Health (NIH) has made this all possible by 
conducting and supporting our nation's biomedical research. The world-
class NIH researchers, scientists, and programs are dedicated to 
understanding how the human body works and to gain insight into 
countless diseases and disorders. Due to robust investment and support 
from Congress, NIH has made the United States the world leader in 
medical research and has had a direct and significant impact on women 
in science and on women's health research.
    In planning for fiscal year 2006 funding for the NIH, the 
Administration has proposed a 0.5 percent increase. This proposed 
amount however will not keep pace with the Biomedical Research and 
Development Price Index. It is vital that United States' commitment to 
medical research be sustained in order not to erode the foundation 
created over the past several years and to continue to build upon 
promising research to enhance the quality of life for all Americans 
touched by illness and disease.
    Therefore, to continue the momentum of scientific advancement and 
expedite the translation of research from the laboratory to the 
patient, the Society encourages an increase of six percent (6 percent) 
for the NIH, for a budget of at least $30 billion for fiscal year 2006. 
In addition, we request that you strongly encourage the NIH to assure 
that women's health research receives resources sufficient to meet the 
health needs of Americans.
    Scientists have long known of the anatomical differences between 
men and women, but only within the past decade have they begun to 
uncover significant biological and physiological differences. Sex 
differences have been found everywhere from the composition of bone 
matter and the experience of pain to the metabolism of certain drugs 
and the rate of neurotransmitter synthesis in the brain. Sex-based 
biology, the study of biological and physiological differences between 
men and women, has revolutionized the way that the scientific community 
views the sexes. The evidence is overwhelming, and as researchers 
continue to find more and more biological differences, they are gaining 
a greater understanding of the biological and physiological composition 
of both sexes.
    Much of what is known about sex differences is the result of 
observational studies, or is descriptive evidence from studies that 
were not designed to obtain a careful comparison between females and 
males. The Society has long recognized that the inclusion of women in 
study populations by itself was insufficient to address the inequities 
in our knowledge of human biology and medicine, and that only by the 
careful study of sex differences at all levels, from genes to behavior, 
would science achieve the goal of optimal health care for both men and 
women. This has given rise to sex-based biology.
    Many sex differences are already present at birth, whereas others 
develop later in life. These differences play an important role in 
disease susceptibility, prevalence, time of onset and severity and are 
evident in cancer, obesity, coronary heart disease, autoimmune, mental 
health disorders, and other illnesses. Physiological and hormonal 
fluctuations may also play a role in the rate of drug metabolism and 
the effectiveness of response in females and males. This research needs 
to be supported and encouraged. Congress recognizes this importance and 
should support NIH at an appropriate level of funding and direct NIH to 
continue and expand this research into sex-based biology.

                  OFFICE OF RESEARCH ON WOMEN'S HEALTH

    The NIH Office of Research on Women's Health (ORWH) has a 
fundamental role in improving women's health research at NIH. Within 
the Office of the Director, ORWH advises the NIH Director on matters 
relating to research on women's health; strengthens and enhances 
research related to diseases, disorders, and conditions that affect 
women; works to ensure that women are appropriately represented in 
biomedical and behavioral research studies supported by NIH; and 
develops opportunities for and supports recruitment, retention, re-
entry and advancement of women in biomedical careers. ORWH works in 
partnership with the NIH Institutes and Centers to ensure that women's 
health research is part of the scientific framework and improve 
interdisciplinary research opportunities in women's health within NIH. 
ORWH's ambitious agenda encompasses issues that go far beyond 
reproductive capacity, cutting across and integrating scientific 
disciplines, medical specialties, psychosocial and behavioral factors, 
and environmental determinants in a multidisplinary and collaborative 
approach. ORWH endeavors to address sex and gender perspectives of 
women's health and women's health research, as well as differences 
among special populations of women across the entire life span, from 
birth through adolescence, reproductive years, menopausal years and the 
more advanced, elderly years.
    Two highly successful pioneering programs offered through ORWH that 
are critical to further advancing women's health research are Building 
Interdisciplinary Research Careers in Women's Health (BIRCWH) and 
Specialized Centers of Research on Sex and Gender Factors Affecting 
Women's Health (SCOR). These programs benefit both women's and men's 
health through sex and gender research, interdisciplinary scientific 
collaboration, and provide tremendously important support for young 
investigators in a mentored environment.
    The BIRCWH program is an innovative, trans-NIH career development 
program that provides protected research time for junior faculty by 
pairing them with senior investigators in an interdisciplinary mentored 
environment. What makes BIRCWH so unique is that it bridges advanced 
training with research independence, as well as across scientific 
disciplines. Since 2000, 177 scholars have been trained in the 24 
centers recording over 634 publications and 526 abstracts. The scholars 
have secured 40 NIH grants and 70 awards from industry and 
institutional sources.
    The BIRCWH program offered at Magee Women's Hospital in Pittsburgh, 
for example, has been able to successfully support the transition of 
eight young faculty at the beginning of their careers. In the current 
environment young faculty are expected to generate their income by 
teaching, clinical care or grant support. However, being that they are 
new, grant support for salary is unlikely and they end up with heavy 
clinical and/or teaching load's--at just the time in their careers when 
they should be perfecting their recently developed research skills. The 
BIRCWH program allows young researchers at Magee to become established 
and ready to apply for extramural funding and salary support. Magee has 
also been able to provide additional mentoring, courses, and career 
guidance to young investigators in women's health research.
    The SCOR program was established in 2001 and now has 11 centers 
throughout the country. ORWH, along with the National Institute of 
Arthritis and Musculoskeletal and Skin Diseases, the National Institute 
of Child Health and Human Development, the National Institute of 
Diabetes and Digestive and Kidney Diseases, the National Institute on 
Drug Abuse, the National Institute of Mental Health, and the National 
Institute of Environmental Health Sciences, published a request for 
applications to create these centers as a way to meet some of the 
health promotion and disease prevention objectives outlined in the 
``Healthy People 2010'' initiative, a Public Health Service-led 
national activity for setting priority areas.
    The objective of the SCOR program is to expedite interdisciplinary 
development and application of new knowledge to human diseases, to 
learn more about the causes of these diseases, and to foster improved 
approaches to treatment and/or prevention. The program was designed to 
complement other federally supported programs addressing women's health 
issues such as BIRCWH.
    The Institutes and Centers at the NIH, working with the ORWH, have 
identified many research priority areas to be undertaken by SCORs. Some 
of these include studying the influence of toxic environmental factors 
on women's health; examining the sex and/or gender factors in acute and 
chronic pain conditions or syndromes; undertaking studies to examine 
kidney disorders, including the impact of pregnancy, diabetes, and 
hypertension on renal function; studying urologic and urogynecologic 
disorders; examining the biological and behavioral risk factors, 
including sex and/or gender factors, in the development of mental 
disorders such as addictive behaviors, schizophrenia, mood, anxiety, 
and eating disorders; and the developmental biology of the vascular 
system and the role of the fetal environment in programming lifelong 
cardiovascular function.
    We strongly encourage Congress to direct NIH to continue its 
support of ORWH and its programs. This step is needed to assure that 
advancements in discoveries of sex differences and, in particular, 
women's health that are long overdue are not lost. From the discovery 
and understanding of illness and diseases to the formulation of 
treatments, pain relief and potential cures, knowledge base gained from 
these important efforts must not be lost, as the benefits are of 
critical importance to all Americans, men and women.

 WOMEN'S HEALTH OFFICES WITHIN DEPARTMENT OF HEALTH AND HUMAN SERVICES

    In addition to the ORWH, there are several other offices throughout 
the Department of Health and Human Services (HHS) that enhance the 
focus of the government on women's health research. Agencies with 
offices, advisors or coordinators for women's health or women's health 
research are the Department of HHS, the Food and Drug Administration, 
the Centers for Disease Control and Prevention, the Agency for 
Healthcare Quality and Research, the Indian Health Service, the 
Substance Abuse and Mental Health Services Administration (SAMHSA), the 
Health Resources and Services Administration, and the Centers for 
Medicare and Medicaid Services. There is a vital need for these 
agencies to be funded at levels adequate for them to perform their 
assigned missions.
    We are grateful for the Committee's continuing support for the work 
of these entities. But with the exception of NIH and SAMSHA, none of 
these offices, advisors, or coordinators is statutorily authorized. 
Although an authorization does not guarantee an appropriation, having 
one makes it easier. The Society and its Coalition are addressing that 
issue in the appropriate venue through the Women's Health Office Act 
(H.R. 949 and S. 569). But, within your jurisdiction, we ask that the 
Committee Report clarify that Congress supports these offices and would 
like to see them continued and strengthened in the coming fiscal year.
    The focus on women's health within HHS has been of critical 
importance to the advances made in women's health in the last decade. 
As previously mentioned, prior to the early-mid 1990's biomedical 
research had been firmly rooted in the male model--the belief that male 
biology (outside of the reproductive system) was representative of the 
species, and that where female biology differed from male biology it 
was ``atypical'' or ``anomalous''. This led to a lack of knowledge 
about female biology that has significantly compromised women's health. 
It is the offices, advisors and coordinators in the agencies listed 
above who played an essential role in trying to make up for time lost 
in the last decade. We have only just scratched the surface of 
understanding female biology. Now is the time to press ahead and make 
those discoveries and educate women about their health and the 
misinformation they have been given for years and these offices are 
critical to the success of this effort.
    There are many wonderful programs that we could identify from these 
agencies but we would like to specifically mention two that have 
instrumental programs and initiatives that are vital to women's health. 
The HHS Office on Women's Health and the Agency for Healthcare Research 
and Quality each have a unique mission but are unified in advancing 
women's health research.

                      HHS OFFICE OF WOMEN'S HEALTH

    The HHS Office of Women's Health is the government's champion and 
focal point for women's health issues, and works to redress inequities 
in research, health care services, and education that have historically 
placed the health of women at risk. The HHS Office on Women's Health 
coordinates women's health efforts in HHS to eliminate disparities in 
health status and supports culturally sensitive educational programs 
that encourage women to take personal responsibility for their own 
health and wellness. A program initiated by the HHS Office on Women's 
Health that is critical to women's health is the National Centers of 
Excellence in Women's Health (CoEs). Developed in 1996, this program 
offers a new model for university-based women's health care. Selected 
on a competitive basis, the current twenty-one CoEs seek to improve the 
health of all women across the lifespan through the integration of 
comprehensive clinical health care, research, medical training, 
community outreach and public education, and medical school faculty 
leadership development.
    Located in leading academic health centers across the United States 
and Puerto Rico, these Centers are developing new models for women's 
health care that are setting standards beyond what is traditionally 
offered at hospital-sponsored women's clinical health centers. The CoEs 
are able to reach a more diverse population of women, including more 
women of color and women beyond their reproductive years. In addition, 
the CoEs have a strong commitment to integrating research, education, 
and clinical care than most traditional women's health centers.
    A recent evaluation of the CoEs conducted by HHS Office of Women's 
Health concluded that the CoEs provided comprehensive clinical 
preventive services, served a broader cross-section of women, reached 
underserved subpopulations, including minority and economically 
compromised communities, produced higher levels of patient 
satisfaction, and aided in mentoring more women in their professional 
roles as clinicians and/or researchers. However, the report also 
concluded that CoEs remain vulnerable to pressures including, obtaining 
adequate funding and having to compete for scarce resources.
    Coalition member and Director of the University of Illinois Chicago 
National Center of Excellence in Women's Health Stacie Geller, Ph.D., 
strongly believes that her CoE has been instrumental in promoting 
advancement and leadership opportunites for female researchers on 
campus and beyond. In addition, the University of Illinois Chicago CoE 
has improved healthcare for women with a ``one-stop shopping'' model 
within the medical center by incorporating an adolescent clinic, 
midlife practice, and a clinic designed to meet the needs of 
perimenopausal and postmenopausal women in the same facility. The CoE 
also works to reduce barriers to health care for underserved urban 
women, and partners with surrounding communities to disseminate health 
information.
    Considering the advancements that have been made and those that 
still need to be achieved, we urge Congress to provide an increase of 
$1.5 million for the HHS Office on Women's Health to allow it to 
continue to sustain and expand the National Centers of Excellence in 
Women's Health.

               AGENCY FOR HEALTHCARE AND RESEARCH QUALITY

    The Agency for Healthcare Research and Quality (AHRQ) is the lead 
Public Health Service agency focused on health care quality, including 
coordination of all federal quality improvement efforts and health 
services research. AHRQ's work serves as a catalyst for change by 
promoting the results of research findings and incorporating those 
findings into improvements in the delivery and financing of health 
care. This important information provided by AHRQ is brought to the 
attention of policymakers, health care providers, and consumers who can 
make a difference in the quality of health care women receive.
    Congress has had an active role in the Agency's work, providing 
funding while adding responsibilities. This has allowed AHRQ to enhance 
its research on how to: reduce deaths from medical errors; improve 
access and quality of care; promote evidence based health care; 
eliminate racial and ethnic disparities; compile the first national 
report on quality; and assist in improving emergency responsiveness.
    AHRQ has a valuable role in improving health care for women. 
Through AHRQ's research projects and findings, lives have been saved 
and underserved populations have been treated. For example, women 
treated in emergency rooms are less likely to receive life-saving 
medication for a heart attack. AHRQ funded the development of two 
software tools, now standard features on hospital electrocardiograph 
machines that have improved diagnostic accuracy and dramatically 
increased the timely use of ``clot-dissolving'' medications in women 
having heart attacks.
    While AHRQ has made great strides in women's health research, the 
Administration's budget for fiscal year 2006 could threaten life-saving 
research. If a budget request of $319 million were enacted, AHRQ would 
be flat funded at fiscal year 2005 levels. In reality, AHRQ's funding 
has been kept flat for two years as the recent $15 million increase is 
dedicated to a specific project. Flat funding prior to application of 
taps by Congress seriously jeopardizes the research and quality 
improvement programs that Congress demands or mandates from AHRQ. 
Congress through the Medicare Prescription Drug, Improvement, and 
Modernization Act of 2003 directed ARHQ to research comparative 
effectiveness of drugs and other products but provided no appropriated 
funds in fiscal year 2003 or 2004. In fiscal year 2005, AHRQ received 
$15 million to conduct such extensive and important research, far less 
than is needed to do the project.
    It is important that Congress continues its support for AHRQ by 
increasing their funding to $443 million for fiscal year 2006. This 
will ensure that adequate resources are available for high priority 
research, including women's health care, gender-based analyses, 
Medicare, and health disparities.
    In conclusion, Mr. Chairman, we thank you and this Committee for 
its strong record of support for medical and health services research 
and its unwavering commitment to the health of the nation through its 
support of peer-reviewed research. We look forward to continuing to 
work with you to build a healthier future for all Americans.
                                 ______
                                 
Prepared Statement of the Upper County Branch of the Montgomery County, 
                          Maryland Stroke Club

                  A STROKE SURVIVOR: A PERSONAL STORY

    My name is Susan Emery. I am the presiding officer of the Upper 
County Branch of the Montgomery County Stroke Club and I am a stroke 
survivor.
    Our club conducts education and support activities for stroke 
survivors, their family members, and caregivers. We serve people in the 
Maryland suburbs of Washington, D.C., and are fortunate to be in the 
same county as the National Institutes of Health. We have benefited on 
many occasions by the participation of NIH staff members in our 
membership meetings. They have been generous in sharing with us 
information about their research into stroke prevention and treatment.
    On December 26, 1965 at the age of 9, I was playing a new game with 
my brother and a few friends at the kitchen table. That is the last 
thing that I remember. I was unconscious for the next two days. My 
mother first learned, incorrectly, that I had spinal meningitis. I was 
transferred to another hospital where my mother was told that I had 
little chance of survival. Yet, I am here, more than 37 years later, 
and I have survived a stroke.
    People seldom associate strokes with children. These strokes are 
rare, but they do happen. There are about three cases of stroke per 
year in every 100,000 children under age 14. One of the difficulties in 
dealing with strokes in children is getting the right diagnosis 
quickly. There are often delays in diagnosis of childhood stroke.
    I spent 2 weeks in the hospital and the following 4 months in 
intensive physical therapy. My 10th birthday was spent in the hospital, 
and I have a picture in my photo album of myself with my mother and a 
new friend. My right eye is turned down, my mouth is turned down, but I 
am still smiling. During the 4 months in therapy at Holy Cross in 
Detroit, I learned the basics: how to walk, how to talk, and how to 
move the fingers on my right hand. My mother followed the doctor's 
instructions and sent me back to school very quickly, where classmates 
helped me button and unbutton my coat and carry my books, and teachers 
taped papers to the desk so I could learn to write again. I survived 
that 4 months, and would never wish to repeat it.
    I have been in therapy six times in my life. I need to tell you 
about the one time that was the most important to my family. I was 26 
years old and had just had my first child. I kept her safe, for I knew 
my limitations. I always used my left hand to support her. But when she 
was 6 months old, she got to be a little heavy, and twice, as I was 
putting her on the floor to change her diaper, my right hand slipped 
from under her buttocks. She fell only inches in both cases and did not 
even notice. But I noticed. I went in for 2 or 3 months of therapy 
close to Denver, Colorado, where I was living at the time. Here for the 
first time, they helped my right hand and arm dexterity through 
occupational therapy. I also learned that I had aphasia--the inability 
to speak, write or understand spoken or written language because of 
brain injury--because I called things like cornucopias, unicorns 
instead of fruit baskets. Instead of the word being the same, I picked 
a word that sounded the same. These therapists in Colorado worked with 
my mind and my body and I will forever be in their debt.
    Close to 15 years ago, I made a new life for myself in Maryland. 
Here, I have been an outpatient at the National Rehabilitation Hospital 
three times: once for my right foot, once for my Achilles tendon and 
once for my right knee. I have seen numerous physiatrists, all of whom 
are excellent in their field. I have also seen my fair share of 
therapists. Since I have had therapy off and on for most of my life, I 
can honestly say that the first few times you go in to see a therapist, 
you will come out hurting more than when you went in. But in the long 
run, they help tremendously.
    On a work related note, I received a Bachelor of Science in 1978 
from Michigan State University in Computer Science and worked for 12 
years in the field. I started working in the telecommunications 
industry in 1990, and got a Master of Science from the University of 
Maryland, University College in Telecommunications Management. I now 
work for ITT Industries as a senior engineer on a contract supporting 
the Federal Aviation Administration's leased telecommunications 
activities, and have worked there for more than 6 years. I have done 
more than survive. I have become a productive member of society.
    Stroke research has changed my life. Without the research carried 
out 40 to 50 years ago, I would not have benefited from electric shock 
therapy that made me understand the muscles that moved my fingers. 
Without research done 30 years ago, I may not have been able to 
understand how to exercise my hand for dexterity. Without research 
performed 10 years ago, the people around me would not understand that 
they need to get me to the hospital quickly if ever I have another 
stroke. Without current support, researchers may never understand how 
to stop strokes before they happen or how to make current stroke 
survivors live healthier lives.
    Stroke remains America's No. 3 killer and a major cause of 
permanent disability. An estimated 5.4 million Americans live with the 
consequences of stroke and about 1 in 4 is permanently disabled. Yet, 
stroke research continues to receive a mere 1 percent of the National 
Institutes of Health budget. I strongly urge you to significantly 
increase funding for the National Institutes of Health-supported stroke 
research, particularly for National Institute of Neurological Disorders 
and Stroke-supported stroke research. NIH stroke research is essential 
to prevent strokes from happening to children and adults in the first 
place, and to advance recovery and rehabilitation of those who survive 
this potentially devastating illness.
                                 ______
                                 

                        DEPARTMENT OF EDUCATION

       Prepared Statement of the Alamo Navajo School Board, Inc.

    The Alamo Navajo School Board, Inc. operates under resolution from 
the Alamo Navajo Community and from the Navajo Nation and was organized 
within the Alamo Navajo chapter community to establish and operate 
Federal and State programs that provide education, health and community 
development services to the people of Alamo under contracts, grants or 
cooperative agreements. We are responsible for operation of nearly all 
federal programs that serve the 2,000 Navajo people who live on the 
Alamo Reservation. Our 10-square mile reservation is isolated in south-
central New Mexico, 250 miles from the Big Navajo Reservation, thus it 
is critical that we provide local services to persons living on the 
Alamo Reservation. On an annual basis, we operate over $13 million of 
federal and state supported programs.
    In summary our recommendations for the fiscal year 2006 Labor-HHS-
Education and Related Agencies budget are:
  --Reject the Administrations proposal to de-fund the Perkins 
        vocational program and provide at least a modest increase;
  --Direct the Department of Education to allow BIA-funded schools to 
        apply directly for Library Literacy Grant funding;
  --Reject the Administration's proposal to de-fund the Safe and Drug 
        Free schools program and provide at least a modest increase;
  --Allow Indian Head Start program to have the flexibly to allocate 
        funds between their Early and regular Head Start programs;
  --Support a four percent tribal allocation under the Head Start 
        Program;
  --Increase funding for the Workforce Investment Act;
  --Reject the proposal to consolidate Supplemental Youth Services 
        funding into a block grant which would probably cause the loss 
        of Indian SYS funding;
  --Reject the Administration's proposals to reallocate and/or rescind 
        $92 million of already-appropriated fiscal year 2006 CPB funds 
        and to end forward funding for the CPB.
  --Support continued and increased CPB support for Native radio.

                          VOCATIONAL EDUCATION

    We operate a very successful and much-needed program funded through 
the Carl Perkins Vocational and Applied Technology Act and we strongly 
oppose the Administration's proposal to totally de-fund the Carl 
Perkins vocational education program. We are pleased that the House and 
Senate authorizing committees are proceeding with reauthorizing the 
Perkins Act, which sends a clear signal to the White House that 
Congress finds this a valuable program that should be continued.
    We have been administering a Section 116 Perkins Act grant under 
which we are successfully helping Indian people access and complete 
postsecondary education. Our project is named Access-Retention-
Completion (ARC) We are working toward development of a Navajo 
professional workforce that will enable people, if they so choose, to 
fill job needs on the Alamo Navajo Reservation that must now be filled 
by persons from outside the community. Under ARC, our students are able 
to gain academic and technical skills both on and off the reservation, 
via distance learning and on-site classes. The Alamo Navajo School 
Board has articulation agreements with several postsecondary 
institutions to offer classes both on and off reservation. We are able 
to help students with transportation to off-reservation education sites 
through the use of our 15-passenger van. We are making education more 
accessible and affordable for postsecondary students who are also 
parents. Our child care program provides pre-natal to early head start 
child care. We also have an after school tutoring program for older 
school-age children. Finally, we are providing support services to all 
postsecondary students through counseling, placement, advisement and 
facilitation.
    While we feel very good about the development of our Access-
Retention-Completion project, it takes more than four years to fully 
develop this multifaceted program. We are currently serving 83 
students, with an 80 percent completion rate for on-site classes and 
100 percent completion rate for students taking off-reservation 
classes. Our placement rate is 80 percent for on-site and 90 percent 
for off-reservation. Our students are about evenly split between on and 
off reservation programs. We also believe that our ARC project has the 
very real potential to be a model for other isolated communities--both 
Indian and non-Indian--and having several more years of assured funding 
would bring the necessary additional experience to serve as a model 
program.

              IMPROVING LITERACY THROUGH SCHOOL LIBRARIES

    The Alamo-Navajo School Board is excluded from applying for these 
much needed funds that would, as Congress intended, enable us to update 
our school library materials and media center equipment and assure an 
appropriately credentialed media specialist is on hand to assist our 
students. The Department of Education has taken the position that 
because the BIA-funded schools receive a 0.5 percent set-aside from the 
annual appropriations for this program, they cannot apply for 
discretionary grants as an LEA (local education agency) under the 
program operated by the Department. The average grant award under the 
Department's discretionary grant program ranges from $150,000 to 
$300,000.
    In fiscal year 2005, the Department of Education transferred 
$99,211 to the BIA for the use of the BIA-funded schools. The BIA, 
however, determined that instead of making the funds available--by 
discretionary or formula grant--to all of the 184 schools in the BIA 
school system, the entire fiscal year 2005 amount would be allocated to 
only two schools. The schools selected were on the BIA Center for 
School Improvement list for proposed restructuring, meaning they had 
not met adequate yearly progress (as required by the No Child Left 
Behind Act) despite earlier intervention.
    We understand that poorly performing schools require much 
assistance to enable them to help their students achieve academic 
success, and it is unlikely that the entire $99,000 would be sufficient 
to correct the deficiencies experienced by just one BIA-funded school. 
Nonetheless, it is unfair to all BIA schools if the Department of 
Education excludes BIA-funded schools from the discretionary program 
and the BIA adopts a policy to restrict funds made available to a 
select few. We urge the Congress to direct the Department of Education 
to reconsider its exclusionary practice and allow the BIA-funded 
schools to apply directly to the Department for the Library Literacy 
grant funding.

               SAFE AND DRUG FREE SCHOOLS AND COMMUNITIES

    The Alamo-Navajo School Board strongly opposes the Administration's 
proposal to eliminate funding for the Safe and Drug Free Schools State 
Grants program ($437.4 million in fiscal year 2005). Under the 1 
percent set-aside for BIA-funded schools, we received $29,000 that 
partially funded a school-home liaison who works directly with parents 
and community on matters identified by the school that would aid in 
ensuring a healthy learning environment.
    As you are no doubt aware, alcohol and drug-related illnesses and 
crime levels in Native American communities greatly exceed the 
mainstream populations. By tapping all available sources of funds, we 
seek to provide our students the drug prevention and school safety 
programs that will help them develop the life skills that may enable 
them to live better, healthier lives. We urge Congress to reject the 
Administration's proposal to eliminate this valuable program and 
instead provide at least a modest increase.

                               HEAD START

    The American Indian Head Start and Early Head Start programs 
receive a less than 3 percent share of the 13 percent set-aside for 
Indian, migrant, territorial, children with disabilities programs. In 
fiscal year 2004, that translated to $161.6 million for Indian Head 
Start (ages 3-5 years) and $27.5 million for Indian Early Head Start 
(ages 0-3 years), which served a combined total of nearly 24,000 
children. Under the Administration's proposal, our programs would 
receive none of the requested $45 million increase since all of it is 
targeted for pilot projects whereby states would consolidate Head Start 
and other state children's programs.
    Although level funding in these constrained budgetary times may be 
viewed as a success, programs such as ours which are located in very 
rural areas are faced with rising costs that are greater than those 
located in more metropolitan areas, i.e., fuel costs for 
transportation, food, staff training. Level funding also does not 
address the increasing costs related to higher salaries for staff who 
achieve the high quality staff requirements of the program nor the 
unfunded mandate to install small child restraints in program vehicles 
(which cost $6,000 but was not in our budget nor were we provided 
reimbursement from the national Head Start office).
    Further, with the myriad and increasingly stringent requirements, 
small programs such as ours are losing the flexibility to structure our 
services to best meet the needs of our children. We need to be able to 
structure our Early Head Start and Head Start programs to the changing 
dynamics of our community yet current Head Start policies restrict us 
from being able to allocate our program funds to provide the services 
in accordance with the demographic changes. For instance, this year our 
Early Head Start has a waiting list which could result in an additional 
classroom of students while our enrollment for the Head Start program 
is less than anticipated. The logical reaction would be to respond to 
the need and utilize program funds to establish the necessary 
additional Early Head Start class but we were informed by the Head 
Start Grant office that even though we receive our Early Head Start/
Head Start funds in one grant document, we must expend the monies under 
two separate budgets. Therefore, a number of Early Head Start eligible 
children in our community are not being served since there are no other 
early education programs available in our isolated area.
    We ask that when Congress takes up the reauthorization of the Head 
Start Act, that (1) the Indian Head Start set-aside be increased from 
the present 2.8 percent to no less than 4 percent; and (2) provide 
program flexibility so that Indian Early Head Start/Head Start grant 
recipients may allocate funds between their Early and regular Head 
Start programs in the manner that best meet the needs of the population 
served.

                        WORKFORCE INVESTMENT ACT

    The Alamo Navajo School Board receives funding under the Workforce 
Investment Act's Section 116 Program and the Supplemental Youth 
Services program. The Administration has proposed level funding ($54.2 
million) for the Section 116 program which provides grants to Indian 
Tribes, Urban Indians, Hawaiians and Samoans. This program has been 
flat funded or years and we support the National Congress of American 
Indians request of $75 million for the Section 116 program.
    We oppose the Administration's proposal that the Supplemental Youth 
Services Program (of which the tribes receive $1.5 percent allocation, 
or about $15 million annually) be combined with three other streams of 
money and put into a block grant, with no obvious guarantee that the 
tribal money would be preserved. We are pleased that the House bill 
reauthorizing the WIA (H.R. 27) did not go along with this 
consolidation proposal and urge that the Appropriations Committee 
likewise reject this proposal and to provide an increase for 
Supplemental Youth Services which has been flat funded for years.

                  CORPORATION FOR PUBLIC BROADCASTING

    The Alamo Navajo School Board is the licensee for a community radio 
station--KABR-AM in Magdalena, NM--which receives a modest amount of 
funding from CPB. We commend CPB for increasing funding for rural sole 
source radio stations--of which we are one. We also appreciate that CPB 
has provided start-up funds for a Center for Native American Radio 
which is to provide technical and other service to Indian radio 
stations. Our radio signal reaches approximately 13,000 people, 
including the Alamo population of 2,072. Of the 432 Alamo households, 
only 25 percent have telephones, and there is no cell phone service. So 
you can see what an important role our community radio station plays at 
Alamo Navajo.
    There are currently 33 Indian-owned radio stations--all 
noncommercial--in thirteen states. Most are licensed to nonprofit 
organizations. We ask for this Committee's continued support of Native 
radio.
    We are extremely concerned about the Administration's proposal to 
rescind $10 million and divert an additional $82 million of already 
appropriated fiscal year 2006 CPB funds to digital conversion and 
satellite interconnection. Such a rescission/diversion of funds would 
be a terrible setback for our station, which already runs on a shoe 
string. Should Congress approve the Administration's request and if it 
were applied across-the-board, we would be faced with a 25 percent 
reduction of CPB funds.
    We ask Congress to again reject--as you have done the past four 
years--the Administration's proposal that the advance funding for CPB 
be eliminated.
    Thank you for your consideration of concerns and recommendations of 
the Alamo Navajo School Board.
                                 ______
                                 
 Prepared Statement of the American Association of Colleges of Nursing

    The American Association of Colleges of Nursing (AACN) respectfully 
submits this statement highlighting funding priorities for nursing 
education and research programs in fiscal year 2006. AACN represents 
over 580 senior colleges and universities with baccalaureate and 
graduate nursing programs, and over 190,000 students and 10,000 faculty 
members. These institutions are responsible for educating about half of 
our nation's registered nurses (RNs) and all of the nurse faculty and 
researchers. Nursing represents the largest health profession in the 
nation, with approximately 2.7 million dedicated, trusted professionals 
delivering primary, acute, and chronic care to millions of Americans 
daily across the spectrum of settings.

                    THE NATIONWIDE NURSING SHORTAGE

    Our country continues to be plagued by a shortage of nurses that is 
only expected to intensify in the future. While AACN is cognizant of 
the difficult budget environment in which the Subcommittee and the 
entire Congress must operate, patient safety is compromised without a 
sufficient number of RNs. Indeed, the American College of Healthcare 
Executives reported in 2004 that 72 percent of hospitals were 
experiencing a nursing shortage. Furthermore, the Joint Commission on 
Accreditation of Healthcare Organizations (JCAHO) found in 2002 that 
the nursing shortage contributes to nearly a quarter of all unexpected 
incidents that kill or injure hospitalized patients. Since nurses 
comprise the largest component of hospital staffs, shortages also 
result in emergency room overcrowding and diversions, increased wait 
time for or outright cancellation of surgeries, discontinued patient 
care programs or reduced service hours, and delayed discharges.
    The U.S. Bureau of Labor Statistics (BLS) has projected that by 
2012, our nation will need an additional 1.1 million new and 
replacement registered nurses. Despite nursing being identified by BLS 
as the fastest growing occupation, according to the Health Resources 
and Services Administration (HRSA), the United States still will be 
roughly 800,000 nurses short in 2020, unless there is a significant and 
sustained increase in the number of nurses graduating each year and 
entering the workforce. There are nursing vacancies throughout all 
sectors of health care, including long-term care, home care, and public 
health. These alarming predictions are coupled with little change in 
the multitude of contributing factors such as the aging of America's 
population, the aging nurse workforce, high numbers of RN retirements, 
and the increasing demand for more intensive health care services by 
chronically ill, medically complex patients. It is clear that federal 
support must continue to play a critical role in the nation's effort to 
address the nursing shortage.

                     NURSING WORKFORCE DEVELOPMENT

    Acknowledging the situation, Congress passed The Nurse Reinvestment 
Act of 2002. This legislation reauthorized and expanded Nursing 
Workforce Development programs, administered by HRSA under Title VIII 
of the Public Health Service Act, to address the inadequate supply and 
distribution of RNs across the country. These authorities fund nursing 
education and retention programs as well as support individual students 
in their nursing studies. The seven Title VIII grant and student 
programs stimulate innovation in nursing practice and bolster nursing 
education throughout the continuum, from entry-level preparation 
through graduate study. Thoughtful and well-written authorities, Title 
VIII programs are the largest source of federal funding for nursing 
education. In fiscal year 2004, these programs provided loan and 
scholarship support to over 28,000 student nurses.
    Given the demonstrated need for these outstanding programs, past 
funding levels have been insufficient, receiving only $150.67 million 
in fiscal year 2005. AACN respectfully requests $175 million for Title 
VIII Nursing Workforce Development in fiscal year 2006, an additional 
$24.33 million over fiscal year 2005. New monies would support these 
crucial Title VIII programs designed to help resolve the nursing 
shortage through education, recruitment, and retention efforts for the 
nursing workforce. During the last serious nursing shortage in 1974, 
Congress appropriated $153 million for nursing education programs. 
Translated into today's dollars, that appropriation would total $592 
million, almost 4 times the current level.

                      COLLEGES OF NURSING RESPOND

    The approximately 1,500 schools of nursing nationwide have been 
working diligently to expand enrollments. In fact, AACN found in a 
recent study that enrollments increased in 2004 by 15.5 percent for 
entry-level baccalaureate, master's, and doctoral nursing programs, 
over the 9.1 percent increase experienced in 2003. These increases are 
attributed to intensive marketing efforts by the private sector, 
public-private partnerships providing additional resources to expand 
capacity of nursing programs, and state legislation targeting funds 
towards nursing scholarships and loan repayment.
    While impressive, these increases still cannot meet the demand. In 
the November 2003 issue of Health Affairs, Dr. Peter Buerhaus reported 
that nursing school enrollments would have to increase by at least 40 
percent annually just to replace those nurses who retire, due to 
declining numbers of young RNs over the past 20 years. It is important 
to note that in spite of protracted efforts by colleges nationwide, 
AACN found that enrollments have increased only by a total of 53.5 
percent over the last 5 years in entry-level baccalaureate programs.
    In spite of increasing enrollments and the demonstrated need for 
RNs, U.S. colleges of nursing must still turn away eligible students. 
In 2004, AACN found that at least 32,797 qualified applicants were 
turned away, up sharply from over 18,000 in 2003. These students were 
turned away due to insufficient numbers of faculty, clinical sites, 
classroom space, clinical preceptors, and budget constraints. Over 75 
percent of the schools surveyed cited the faculty shortage as the 
primary barrier to increasing enrollments. Some of these qualified 
students are being placed on waiting lists that may be as long as 2 
years.

              BOTTLENECK: THE COEXISTING FACULTY SHORTAGE

    AACN strongly believes that the most effective strategy for the 
resolution of the nursing shortage is addressing the underlying faculty 
shortage. HRSA reported in 2000 that just 9.6 percent of the RN 
workforce holds master's degrees, while only 0.6 percent holds 
doctorates. AACN found that more than half, 53.4 percent, of the nurse 
faculty vacancies in 2004 were for faculty positions requiring the 
doctoral degree. In 2003 AACN reported there were 10,500 full-time 
master's and doctorally prepared faculty teaching in baccalaureate and 
graduate nursing programs. Projections through 2012 show that the 
faculty pool will shrink by at least 2,000 as compared to 2003, even 
after accounting for retirements, resignations, and additional 
entrants. Note that these figures do not take into account the need for 
faculty in new or expanded programs, but represent only present 
staffing requirements. If the faculty vacancy rate holds steady, it is 
expected the deficit of nurse faculty will swell to over 2,600 unfilled 
positions in 2012.
    The situation is only expected to worsen with time. Faculty age 
continues to climb, narrowing the number of productive years nurse 
educators can teach. Significant numbers of faculty are expected to 
retire in the coming years, as the average age is 52. Likewise, there 
are not enough candidates in the pipeline to take their places. For 
example, an average of 410 individuals are awarded doctoral degrees in 
nursing each year, but almost a quarter, 23 percent, take jobs outside 
of academic nursing. Higher compensation in clinical and private sector 
settings lures current and potential nurse educators away from the 
classroom. The average salary of a nurse practitioner in an emergency 
department was $80,697, according to the 2003 National Salary Survey of 
Nurse Practitioners. In contrast, AACN found that the average salary 
for a nurse faculty member was $60,357 in 2003. Without sufficient 
nurse faculty, schools of nursing will not be able to expand their 
capacities to educate new generations of the nurses.

          REVERSING THE TREND: THE NURSE FACULTY LOAN PROGRAM

    This trend can be reversed--with your help. Additional 
appropriations for the Nurse Faculty Loan Program, Section 846A of 
Title VIII, will provide targeted assistance. Designed to help increase 
the number of nurse faculty, grants are provided to colleges of nursing 
in order to create a loan fund. To be eligible for these loans, 
students must be pursuing either a master's or doctoral degree on a 
full-time basis. Loan recipients will have up to 85 percent of their 
educational loans cancelled over a four-year period, if they agree to 
teach at a school of nursing. The loan is cancelled at a rate of 20 
percent for the first three years, increasing to 25 percent in the 
final year. A student may receive a maximum loan award of $30,000 per 
academic year for tuition, books, fees, laboratory expenses, and other 
reasonable educational costs. In fiscal year 2004, 61 grants were made 
to schools of nursing, which in turn supported a projected 419 future 
nurse faculty members. In fiscal year 2005, $4.83 million was 
appropriated.
    For example, if the current funding was doubled to almost $10 
million, based on this year's projections, colleges of nursing could 
educate over 800 future faculty. Though the student to faculty ratios 
vary by state, a common average is one faculty member for every ten 
students. Then one could surmise from that estimate that the doubled 
funding could help to educate over 800,000 future nurses.

                        OTHER SOURCES OF RELIEF

    AACN would like to highlight the following programs in addition to 
the Nurse Faculty Loan Program: the Advanced Education Nursing program, 
the Workforce Diversity program, and the Nurse Education, Practice, and 
Retention program.
    The Advanced Education Nursing program supports the majority of 
colleges of nursing that prepare graduate-level nurses to be primary 
care providers, some of whom become faculty. Receiving $58.17 million 
in fiscal year 2005, this grant program helps schools of nursing, 
academic health centers, and other nonprofit entities improve the 
education and practice of nurse practitioners, nurse-midwives, nurse 
anesthetists, nurse educators, nurse administrators, public health 
nurses, and clinical nurse specialists. Out of the 149 applications 
received for this program in fiscal year 2004, 82 new grants were 
awarded to institutions and 75 previous awarded grants were continued. 
In addition, 408 schools of nursing received traineeship grants, which 
in turn directly supported 8,925 individual student nurses.
    The health system's increasing demand for primary care, increased 
utilization of case management--particularly for chronic illnesses, 
prevention and cost-efficiency, and a shortage of physicians are 
driving the nation's need for nurse practitioners, certified nurse-
midwives, and other RNs with graduate education and advanced clinical 
skills, known as advanced practice nurses (APNs). Mounting studies 
demonstrate the quality of APN care is at least equal to, and at times 
better than comparable physician services rendered by physicians, and 
often at lower cost. This is especially important, as the 78 million 
Baby Boomers age, their demand for health care services will skyrocket. 
AARP reported that the rate of physician office visits by those 65 and 
older jumped 22 percent from 1985 to 1999.
    Workforce Diversity grants prepare disadvantaged students to become 
nurses. As the United States becomes ever more heterogeneous, it is 
imperative that the composition of our nursing workforce mirrors this 
shift. According to the U.S. Census Bureau, roughly 30 percent of the 
population was reported as a racial or ethnic minority in 2000, but by 
2050 that percentage will jump to over 52 percent. This program awards 
grants to schools of nursing and other entities seeking to increase 
access to nursing education for disadvantaged students, including 
racial and ethnic minorities under-represented among RNs. The program 
provides scholarships or stipends, pre-entry preparation, and retention 
activities to enable students to complete their nursing education. In 
fiscal year 2004, 144 applications were submitted, from those 27 new 
grants were awarded and 35 previously awarded grants were continued. 
Under the scholarship program alone, 473 students each received $7,000 
scholarships. Workforce Diversity received $16.27 million in fiscal 
year 2005.
    The Nurse Education, Practice and Retention program helps schools 
of nursing, academic health centers, nurse-managed health centers, 
state and local governments, and health care facilities strengthen 
programs that provide nursing education, facilitate innovations in 
nursing practice, and retention of the nursing workforce. Education 
grants are made to enable schools to expand enrollments in 
baccalaureate nursing programs, develop internship and residency 
programs, and provide for new technology. Practice grants are made to 
expand arrangements in non-institutional settings to improve primary 
health care in medically underserved communities, provide care for 
underserved populations, enhance practitioner skills, and develop 
cultural competencies. Retention grants are made to the Career Ladder 
program, which supports efforts to assist people to obtain the 
necessary education to either enter the profession or to advance within 
it; enhance patient care delivery systems through incorporation of best 
practices, and improved communication. In fiscal year 2004, 336 
applications were submitted, from those, 40 new grants and 85 
continuation grants were awarded. Nurse Education, Practice, and 
Retention received a total of $36.48 million in fiscal year 2005.

                 NATIONAL INSTITUTE OF NURSING RESEARCH

    One of the 27 Institutes and Centers at the National Institutes of 
Health (NIH), the efforts of the National Institute of Nursing Research 
(NINR) improve patient care and foster advances in nursing and other 
health professions' practice. These practices must be must constantly 
updated and validated based on rigorous, peer-reviewed research. The 
outcomes-based findings derived from NINR research are important to the 
future of the health care system and its ability to deliver safe, cost-
effective, and high quality care. Through grants, research training, 
and interdisciplinary collaborations, NINR addresses care management of 
patients during illness and recovery, reduction of risks for disease 
and disability, promotion of healthy lifestyles, enhancement of quality 
of life in those with chronic illness, and care for individuals at the 
end of life. To advance this research, AACN requests a funding level of 
$160 million in fiscal year 2006, an additional $21.91 million over the 
$138.09 million NINR received in fiscal year 2005.
NINR Addresses the Need for Translational and Clinical Research
    NINR emphasizes translational research, the means by which basic 
findings relating to behavior, molecules, and genes are tested in the 
clinical setting and translated into innovative medical practices and 
improvements in public health. This effort is incorporated into the NIH 
Roadmap for Medical Research. Under the framework of the Roadmap 
Initiative, NINR and nurse researchers are addressing the development 
of new interdisciplinary research teams and enhanced clinical research 
to move the overall NIH portfolio of social, behavioral, and medical 
research forward in this coordinated and cohesive effort.
NINR Addresses the Shortage of Nurse Researchers and Faculty
    NINR allocates 8 percent of its budget, a high proportion when 
compared to other NIH institutes, to research training to help develop 
the pool of nurse researchers. In fiscal year 2004, NINR training 
dollars supported 88 individual researchers and provided 186 
institutional awards, which in turn supported a number of nurse 
researchers at each site. Since nurse researchers often serve as 
faculty members for colleges of nursing, they are actively educating 
our next generation of RNs.

               AGENCY FOR HEALTHCARE RESEARCH AND QUALITY

    While NIH supports biomedical research that improves health care by 
focusing on disease cause, cure, and prevention; the Agency for 
Healthcare Research and Quality (AHRQ) supports research from a systems 
perspective, collecting evidence-based information on health care 
outcomes. AHRQ research findings are used by patients, clinicians, 
health system decision makers, and public policymakers to guide 
healthcare delivery systems and patient care. The research supported by 
AHRQ not only improves the quality of health care services, but also 
helps people make more informed decisions about their healthcare. AACN 
joins the Friends of AHRQ in recommending a funding level of $440 
million for fiscal year 2006, an additional $121 million over the 
fiscal year 2005 level of $318.7 million.

Health Systems Research at AHRQ Addresses Nurses' Role in Patient 
        Safety
    AHRQ research has demonstrated that inefficient work processes, 
overwhelming work loads, extended work hours, and poor workplace 
designs create obstacles to providing patients safe, cost-effective, 
and high quality health care. The New England Journal of Medicine 
published a study of over 6 million patients in May, 2002 that found 
hospitalized patients had better outcomes when the majority of their 
nursing care was provided by RNs. Decreased hours of RN care, stemming 
from the nursing shortage, correlated with longer hospital stays, 
increased incidence of urinary tract infections and gastrointestinal 
bleeding, as well higher rates of pneumonia, shock, and cardiac arrest. 
When patients received additional hours of RN care, the death rates 
dropped for pneumonia, shock or cardiac arrest, upper gastrointestinal 
bleeding, sepsis, and deep venous thrombosis.

AHRQ Research Demonstrates that Nurse Education Affects Patient 
        Outcomes
    Another AHRQ study found that by employing a greater proportion of 
more highly educated nurses reduced the mortality and failure to rescue 
rates from life threatening complications. This extensive study in the 
September 2003 issue of the Journal of the American Medical Association 
found that surgical patients have a ``substantial survival advantage'' 
if treated in hospitals with higher proportions of nurses educated at 
the baccalaureate or higher degree level. In hospitals, a 10 percent 
increase in the proportion of nurses holding BSN degrees decreased the 
risk of patient death and failure to rescue by 5 percent.

                               CONCLUSION

    Nurses can no longer simply give care to a patient at the bedside. 
They must evaluate research that promotes evidence-based practice and 
utilize technical innovations to provide quality patient care. To 
achieve this level of excellence, AACN recognizes that our nation 
desperately needs a dedicated, long-term vision for educating the new 
nursing workforce. Strategies must encompass state support, public-
private sector initiatives, and increased federal funding for nursing 
education and research. Title VIII Nursing Workforce Development 
programs enable colleges of nursing to innovate and prepare students 
for the realities of caring for our nation's diverse population in many 
health care settings across the lifespan. NINR, NIH, and AHRQ provide 
the research that supports the evidence base for safe practice and 
quality care delivery. We ask the Subcommittee to graciously consider 
our appropriations requests for fiscal year 2006.
                                 ______
                                 
          Prepared Statement of the American Chemical Society

    Chairman Specter and other members of the Labor, Health and Human 
Services and Education Subcommittee, I appreciate the opportunity to 
submit written testimony on behalf of the American Chemical Society. 
The American Chemical Society (ACS) is the world's largest scientific 
society with over 159,000 members. We represent individual chemists and 
engineers in academia, industry, and government.
    Mr. Chairman, the ACS recognizes that ensuring the continued 
economic supremacy and homeland security of this nation depends upon 
maintaining our global technological leadership. This leadership has 
resulted from the ready availability of a domestic workforce of highly 
trained scientists, technicians, engineers, and mathematicians (the 
STEM workforce). But today's high school students are not performing 
well in math and science overall, and a decreasing number of American 
students are pursuing college degrees in STEM fields. At the elementary 
school level, the recent PISA test showed that America's 15 year-olds 
perform below average in mathematics problem solving compared to their 
peers in other developed countries.
    Thanks to your leadership, the Department of Education budget has 
increasingly reflected a commitment to remedy this situation through 
investments in a number of STEM initiatives from the K-12 to 
postsecondary level. These programs must continue to receive strong 
support in order to ensure a globally competitive U.S. workforce.
    Central to this quest is ensuring the supply of qualified K-12 
science and mathematics teachers. As you know, the Math and Science 
Partnerships, authorized in the No Child Left Behind Act at an 
increasing annual level to reach $450 million by fiscal year 2007, are 
the sole source of dedicated DoEd K-12 math and science funding. This 
program supports valuable long-term, content-based continuing education 
for math and science teachers--the type of training that research shows 
is most effective in improving student achievement.
    Chairman Specter, we greatly appreciate your past support of the 
Partnership program which has grown from $12.5 million in fiscal year 
2002 to $180 million in fiscal year 2005. We applaud you for this and 
urge you to work toward the authorized level by funding the program at 
the level of $400 million in fiscal year 2006. Reaching the authorized 
level is critical, as the No Child Left Behind Act requires science 
testing to begin in the 2007-2008 school year.
    ACS also urges you to reject the Administration's proposal to 
earmark its requested $120 million increase in the program for a new 
high school mathematics initiative. This proposal strays from the 
intent of the No Child Left Behind Act, which seeks to address the 
equally critical needs in both math and science. A similar proposal was 
made by the Administration in the fiscal year 2005 budget and, in our 
view, wisely rejected by your Committee.
    The ACS recognizes the value of encouraging chemists retiring early 
or those desiring a change from industry work to consider and train for 
a second career in high school teaching. To that end, we support the 
president's Adjunct Teacher Corps initiative, which brings experienced 
professionals with subject-matter knowledge into the classroom to teach 
part or full-time in areas of high need, including science and math. 
These professionals can offer valuable insights into the content and 
practical applications of their subject areas. We recommend that 
funding be provided to ensure adequate teacher development and to 
ensure effective communication of their expertise to their students.
    On another front, the ACS opposes the Administration's proposal to 
eliminate the Vocational and Technical Education program. We feel it 
would have a very negative impact upon our technological leadership. In 
addition to scientists and engineers, the STEM workforce relies on 
highly trained technicians, of whom many enter the workforce through 
tech-prep programs that are currently supported under the Vocational 
and Technical Education program ($110.7 million in fiscal year 2005). 
It is unrealistic to expect states to assume the burden of funding 
tech-prep programs through the new High School Intervention program, 
due to its emphasis on meeting academic state standards.
    At the post-secondary level, the Department of Education provides 
incentives to students to pursue science and engineering occupations. 
The Graduate Assistance in Areas of National Need program (GAANN) is 
one such example. GAANN provides graduate and doctoral students with 
enhanced fellowship opportunities. We believe this program should 
support at least 1,200 fellowships, up from the 850 in fiscal year 2004 
and the 721 fellowships that would be supported under the current 
budget request. This increased support is vital at a time when our 
nation must have the intellectual resources to respond to homeland 
security threats and maintain our economic growth.
    Furthermore, we strongly support programs such as the Minority 
Science and Engineering Improvement program in order to increase the 
participation of underrepresented minorities in scientific and 
technological careers.
    In closing, we appreciate your past support and leadership on 
behalf of the Department of Education's programs. We strongly believe 
that proactively investing in STEM education today, will pay real 
dividends with a more competitive, innovative and successful American 
workforce tomorrow.
                                 ______
                                 
       Prepared Statement of the American College of Rheumatology

    The American College of Rheumatology (ACR) is pleased to provide 
this statement for the record in support of the several important 
agencies and programs that address arthritis within the Department of 
Health and Human Services.
    The ACR is an organization of physicians, health professionals and 
scientists that serves its members through programs of education, 
research and advocacy that foster excellence in the care of people with 
arthritis, rheumatic and musculoskeletal diseases.
    Arthritis means swelling, pain and loss of motion in the joints of 
the body. There are more than 100 rheumatic diseases that cause this 
condition, which can sometimes be fatal, in both children and adults of 
all ages. One in three adults, or 70 million people in the United 
States, are affected by arthritis and other rheumatic conditions 
according to the Centers for Disease Control and Prevention (CDC). 
Arthritis and other chronic joint problems are the leading cause of 
disability among adults in the United States, costing more than $86 
billion a year in medical costs and lost productivity. These numbers 
and related costs are expected to increase as the U.S. population ages.
    This burden will surely increase, possibly uncontrollably, as the 
baby boomer group continues to age. Although some forms of arthritis 
are predominant in older individuals, arthritis also affects children 
and adults of all ages. The number of individuals affected, as well as 
associated costs, will increase as the size of our elderly population 
continues its upswing.
    Current research is providing breakthrough advances that have the 
potential to revolutionize our understanding of arthritis and rheumatic 
diseases, leading to more effective treatments, decreased costs and 
increased quality of life for patients suffering from these conditions. 
The federal government is doing critical medical research into the 
causes, treatment and prevention of arthritis and rheumatic diseases. 
The ACR urges the subcommittee to increase its investment in research 
and arthritis programs to further progress made in preventing, 
diagnosing and treating these prevalent diseases.

                   THE NATIONAL INSTITUTES OF HEALTH

    The ACR supports a 2006 appropriation of $30 billion for the 
National Institutes of Health (NIH) in order for it to carry out its 
goal to acquire new knowledge to help prevent, detect, diagnose, and 
treat disease and disability. The NIH disperses funding to the 
different institutes within it, including the National Institute of 
Arthritis and Musculoskeletal and Skin Diseases (NIAMS) and the 
National Institute of Allergy and Infectious Diseases (NIAID). 
Therefore, overall funding for NIH is extremely important to the 
federal medical research effort in arthritis and rheumatic diseases.

   THE NATIONAL INSTITUTE OF ARTHRITIS AND MUSCULOSKELETAL AND SKIN 
                                DISEASES

    The ACR strongly supports a 2006 appropriation of $541.6 million 
for the National Institute of Arthritis and Musculoskeletal and Skin 
Diseases (NIAMS), which leads the federal medical research effort in 
arthritis and rheumatic diseases. The NIAMS conducts research related 
to the causes, treatments and prevention of diseases of the bone, 
joints, muscle, skin and other connective tissues. The NIAMS sponsors 
research and research training at universities and medical centers 
throughout the United States. Research sponsored by the NIAMS leads to 
the development of more effective treatments, which leads to decreased 
costs and improved quality of life for patients suffering from 
rheumatic diseases.

       THE NATIONAL INSTITUTE OF ALLERGY AND INFECTIOUS DISEASES

    The ACR recommends a 2006 appropriation of $4.667 billion for the 
National Institute of Allergy and Infectious Diseases (NIAID), which 
conducts research that strives to understand, treat, and ultimately 
prevent the myriad of infectious, immunologic, and allergic diseases. 
The NIAID's research focuses on the basic biology of the immune system 
and mechanisms of immunologic diseases including autoimmune disorders. 
To accomplish its goals, the NIAID carries out a wide range of basic, 
applied, and clinical investigations within its own laboratories, and 
provides research grant, contract, and cooperative agreement support to 
scientists at universities and other research institutions throughout 
the country and the world.

             THE AGENCY FOR HEALTHCARE RESEARCH AND QUALITY

    The ACR supports a 2006 appropriation of $440 million for the 
Agency for Healthcare Research and Quality (AHRQ) to carry out its 
mission to improve the quality, safety, efficiency, and effectiveness 
of health care for all Americans. AHRQ's health services research 
complements the biomedical research of the NIH by helping physicians, 
hospitals, purchasers and other stakeholders in health care delivery 
make informed decisions about what treatments work best, for whom, 
when, and at what costs.

                   THE NATIONAL ARTHRITIS ACTION PLAN

    The ACR recommends a 2005 appropriation of $15 million for the 
National Arthritis Action Plan (NAAP). The NAAP, housed within the CDC 
National Center for Chronic Disease Prevention and Health Promotion, 
helps deliver the advances made in the biomedical research system to 
millions of Americans who have arthritis. The NAAP is designed to 
increase recognition among the general public, people with arthritis 
and their families, medical care providers, and policy makers, of the 
impact of arthritis, what can be done to prevent or delay its onset, 
and what effective interventions and are available to reduce disability 
and improve the quality of life. The NAAP has made a tremendous impact 
in how state public health departments address this national health 
problem, and with increased funding, programs could be established in 
more states and existing programs could be expanded.

          IMPACT OF CONTINUING RESOLUTIONS ON MEDICAL RESEARCH

    The ACR urges Congress to recognize the difficulties imposed on 
researchers by interruptions in the medical research funding cycle 
caused by delays in the federal appropriations process. Use of the 
continuing resolution mechanism to fund government operations in the 
absence of the normal appropriations process often causes federally 
funded researchers to halt their research until the appropriations 
process is resolved. These disruptions have the potential to not only 
significantly compromise the validity of the basic medical research 
being conducted, but can result in the unnecessary expenditure of 
federal funds to reactivate specific research studies. In order to 
preserve the integrity of federally supported medical research, the ACR 
urges Congress to minimize the use of continuing resolutions.

                                SUMMARY

    The ACR appreciates the subcommittee's support for these important 
programs in recent years. As physicians involved in both research and 
specialized patient care, ACR members are acutely aware of the 
magnitude of the challenges that disease and disability place on the 
health care delivery system. The ACR encourages the subcommittee to 
provide a strong investment in the programs listed above for 2006 so 
that necessary research and programs to combat arthritis and related 
diseases can continue. These programs are critical to the development 
of more effective treatments, decreasing costs and improving the 
quality of life for patients suffering from rheumatic diseases.
                                 ______
                                 
    Prepared Statement of the American Dental Education Association

    The American Dental Education Association (ADEA) is grateful for 
the opportunity to provide testimony with regard to fiscal year 2006 
appropriations for Federal programs that help to educate the future 
dental workforce, encourage the prevention of dental disease and 
provide access to oral health care for underserved populations. These 
programs are critical to academic dental institutions in fulfilling 
their primary mission to educate, conduct research and provide patient 
care. ADEA strongly urges Congress to enhance funding for the programs 
and preserve their fundamental structure.
    ADEA is the premier national organization that speaks for dental 
education. It is dedicated to serving the needs of all 56 U.S. dental 
schools, nearly 730 dental residency programs and 550 allied dental 
programs, as well as the tens of thousands of faculty, dental residents 
and students engaged in training. It is at dental education 
institutions that future practitioners and researchers gain their 
knowledge; the majority of dental research is conducted; and 
significant dental care is provided to underserved low-income 
populations, including individuals covered by Medicaid and the State 
Children's Health Insurance Program (SCHIP).
    Academic dentistry endeavors to address the oral health needs of 
the nation's uninsured, underinsured and publicly insured citizens. 
Profound disparities in the oral health of the nation's population have 
resulted in what the Surgeon General \1\ called a ``silent epidemic'' 
of dental and oral diseases affecting the most vulnerable among us. 
These disparities, combined with the current shortage of dental school 
faculty, the scarcity of underrepresented minority dentists, and the 
need for targeted incentives to draw dentists to practice in rural and 
underserved communities, make our funding recommendations critically 
important.
---------------------------------------------------------------------------
    \1\ Oral Health in America: A Report of the Surgeon General, 2000.
---------------------------------------------------------------------------
    The Administration's fiscal year 2006 budget proposal reduces by 
approximately 96 percent funding for Title VII Health Professions 
Programs and eliminates 100 percent of the funding for pediatric, 
general and public health dental residency programs. Title VII programs 
embody the federal government's commitment to educating the nation's 
future health care providers. Such programs focus on wide-ranging and 
important matters including interdisciplinary training, geriatric and 
rural health care, allied health education, advanced training for 
dental, allopathic and osteopathic residents. Eliminating funding for 
the programs will gravely weaken the health infrastructure of the 
nation.
    Zeroing out funding for the dental residency training programs 
means that essential advanced education for dental residents and the 
oral health services they provide to underserved communities will be 
eliminated. Abandoning these programs will intensify and contribute to 
the growing crisis in accessing oral health services as more states 
reduce Medicaid dental benefits for adults, the frail elderly and 
compromised patients. Furthermore, restrictions in Medicaid and SCHIP 
enrollment and eligibility have reduced access to oral health care for 
children.
    As Congress wrestles with the fiscal year 2006 appropriations for 
federal agencies and programs of importance to dental education and 
research, ADEA respectfully urges that the following programs' funding 
be restored and enhanced at the levels recommended:

  $15 MILLION FOR TITLE VII GENERAL DENTISTRY AND PEDIATRIC DENTISTRY 
                      RESIDENCY TRAINING PROGRAMS

    ADEA recommends that Congress restore and enhance funding for 
dental residency training programs. These programs are instrumental in 
educating dentists who work in underserved communities and treat 
Medicaid, SCHIP or other underserved populations, particularly those 
with special needs. Furthermore, dentists training in Title VII funded 
programs staff clinics that provide treatment at low or no cost.
$19 million for the ryan white hiv/aids dental reimbursement program of 

                    THE RYAN WHITE CARE ACT (PART F)

    The Dental Reimbursement and the Community-based Dental 
Partnerships programs, the smallest component of the CARE Act, are 
successful in increasing access and educating and training dental 
students, dental residents and allied dental students in the provision 
of care for patients afflicted with the disease. The Dental 
Reimbursement Program (DRP) accomplishes significant benefits for both 
patient care and education of future oral health practitioners.
    Academic dental institutions (ADI) are safety net providers of oral 
and dental care for low-income, uninsured or underinsured 
immunocompromised patients who are prone to oral infections. A recent 
study \2\ found that providing HIV/AIDS patients with regular 
diagnostic and preventive care reduced the need for more complex and 
costly services. Thus, two federal objectives--service to patients of 
limited means and education of future providers--are accomplished with 
this modest but important program.
---------------------------------------------------------------------------
    \2\ Journal of the American Dental Association (133 JADA 1343).
---------------------------------------------------------------------------

  $420 MILLION FOR THE NATIONAL INSTITUTE FOR DENTAL AND CRANIOFACIAL 
                            RESEARCH (NIDCR)

    NIDCR is the only Institute within the National Institutes of 
Health (NIH) whose mission is to improve oral, dental and craniofacial 
health through research, research training, and the dissemination of 
health information. Oral disease affects nearly every American. It is 
essential that Congress increase support for NIDCR's diverse and 
critical research initiatives. Of paramount importance is funding for 
clinical research and dental school research infrastructure. Among the 
ongoing research projects being conducted by dental researchers is work 
on saliva as a reliable diagnostic fluid to detect systemic diseases in 
a non-invasive way, including the detection of cancer-associated 
molecules associated with oral squamous cell carcinoma as well as 
research on how to engineer teeth in the laboratory and transplant them 
into the mouth to replace a missing or damaged tooth. In any future NIH 
reorganization NIDCR should remain independent.

          THE CENTERS FOR DISEASE CONTROL AND PREVENTION (CDC)

$18 million for the CDC Oral Health Program
    The CDC Oral Health Program supports state and community-based 
programs that work to prevent oral disease and reduce disparities in 
oral health. The program works with states to establish surveillance 
systems that provide valuable health information to assess the 
effectiveness of programs and target them to populations at greatest 
risk. Grants have been used to support basic state oral health 
services, including support for program leadership, monitoring oral 
health risk factors, and developing and evaluating prevention programs 
such as community fluoridation and school-based sealant programs. 
Federal funding is essential to maintain these programs.
$130 million for the CDC Prevention Block Grant
    $3.5 million of this amount is for oral health projects. The 
President's budget eliminates the program completely. The funding is 50 
percent of the CDC money that flows back to states for oral health 
programs. It is used by states to purchase and replace fluoridation 
equipment and to maintain a state dental presence.

 $10 MILLION FOR THE DENTAL HEALTH IMPROVEMENT ACT ENACTED AS PART OF 
   THE HEALTH CARE SAFETY NET AMENDMENTS OF 2002 (PUBLIC LAW 107-251)

    The Dental Health Improvement Act will help, when funded, to 
eliminate the disparities in oral health status and assure access to 
oral health services for low-income children. The law authorized $50 
million over 5 years for innovative state oral health care grants. 
Congress has not yet provided funding for this important federal-state 
partnership. The American Dental Association (ADA) and the American 
Academy of Pediatric Dentists (AAPD) join ADEA in requesting $10 
million for this program in fiscal year 2006.
    Grants can be used for a variety of state initiatives including 
loan forgiveness programs for dentists serving in dental health 
professions shortage areas (HPSAs); grants or low-interest loans for 
dentists participating in Medicaid; dental faculty recruitment 
programs; and establishment or augmentation of a state dental officer 
position to coordinate oral health and access issues in the state. The 
program, when funded, will be a shining example of a true federal-state 
partnership, as states must agree to match at least 40 percent of any 
federal contributions under this grant.
$135 million for the minority and disadvantaged assistance programs in 

         THE HEALTH PROFESSIONS EDUCATION AND TRAINING PROGRAMS

    The infrastructure that has been established by previous federal 
investment requires sustained and increased support to meet the 
challenges of diversifying the health care workforce, addressing 
student indebtedness, eliminating faculty shortages, and eradicating 
oral health care disparities in underserved communities.
    The President's fiscal year 2006 budget eliminates funding for the 
Centers of Excellence (COE) program, the Health Careers Opportunity 
Program (HCOP), and the Faculty Loan Repayment Program (FLRP) and 
reduces by nearly 80 percent the funding for Scholarships for 
Disadvantaged Students (SDS). These programs are crucial if we are to 
address concerns with health disparities. The COE, HCOP and SDS 
programs are essential in assisting economically disadvantaged students 
enter and graduate from health professions schools. Underrepresented 
minority recruitment and retention in the health professions is a 
serious problem. In 2004, the first-year enrollment of underrepresented 
minority students in dental school was just 11.3 percent of the total 
first year dental student enrollment. In 1990, the percentage of 
underrepresented minority students in the first year class was 13.8 
percent of the total first year enrollment. While the FLRP assists in 
recruiting and retaining faculty, it is of particular importance to 
academic dentistry as there is currently a faculty shortage. ADEA 
strongly urges Congress to continue investing in HCOP, COE, SDS, and 
FLRP so that the health professions can make strides in diversifying 
the future health care workforce.

       $213 MILLION FOR THE NATIONAL HEALTH SERVICE CORPS (NHSC)

    The National Health Service Corps Scholarship and Loan Repayment 
Programs assist students with financing their health professions 
education while promoting primary care access to underserved areas. It 
is critical that the NHSC receive increased funding to meet the growing 
health care needs in the nation's rural and underserved communities. 
The President's budget proposal cuts $5 million from the NHSC budget at 
a time when it is crucial to maintain a pipeline of health providers in 
health professions shortage areas.

    $108 MILLION FOR THE INDIAN HEALTH SERVICE (IHS) DENTAL PROGRAMS

    Maintaining the health care infrastructure and supporting the 
health care workforce that provides care to the Alaska Native/American 
Indian (AN/AI) population is essential in meeting the needs of Indian 
people. The IHS Loan Repayment Program makes payments on health care 
worker's student loans while they provide care at one of 280 hospital 
sites located around the country. The IHS Scholarship program provides 
both hope and financial support to AN/AI students pursuing careers in 
the health professions. Without these programs access to care as well 
education for the AN/AI population will surely worsen.

$1 MILLION FOR A MEDICAID COMMISSION TO STUDY AND RECOMMEND CHANGES TO 
                                MEDICAID

    ADEA supports the amendment in the Senate's fiscal year 2006 Budget 
Resolution that halts further cuts to Medicaid and instead establishes 
a reserve fund of $1 million to establish a Medicaid Commission to 
study and recommend changes needed in Medicaid. While expenditures on 
dental care account for less than 1 percent of all Medicaid 
expenditures, 25 million children enrolled in Medicaid are eligible for 
needed dental care under the program. Medicaid accounts for almost a 
quarter of all dental expenditures for children under age 6 and 
provides the only guarantee of relief from dental pain and infections, 
restoration of teeth and dental health for millions of children on 
Medicaid. The Medicaid program is the only access that many of the 
poorest and sickest adults have to critical emergency oral health care.
    In conclusion, the American Dental Education Association 
appreciates consideration of our fiscal year 2006 budget 
recommendations for dental education and research. A sustained federal 
commitment is needed to help meet the challenges oral disease poses 
among the nation's most vulnerable citizens including children. So too 
is the development of a partnership between the federal government and 
dental education programs to implement a national oral health plan that 
guarantees access to dental care for everyone, ensures continued dental 
health research, eliminates disparities, and eliminates workforce 
shortages.
                                 ______
                                 
        Prepared Statement of the American Geological Institute

    To the Chairman and Members of the Subcommittee: Thank you for this 
opportunity to provide the American Geological Institute's perspective 
on fiscal year 2006 appropriations for the Department of Education's 
Mathematics and Science Partnership program.
    In 1999, the Third International Math and Science Study found that 
the longer U.S. students are in school, the farther they fall behind in 
math and science proficiency in international comparisons. That 
prompted President Bush to propose the National Math and Science 
Partnership (MSP) program as part of No Child Left Behind. The goal of 
the partnership program is to strengthen K-12 science and math 
education by promoting a vision of education as a continuum that begins 
with the youngest learners and progresses through adulthood with 
teacher training. Among its activities, the program supports 
partnerships that unite K-12 schools, institutions of higher education 
and private industry.
    Congress took the president's suggestion and authorized an MSP 
program at the National Science Foundation (NSF) and another 
partnership program at the Department of Education in 2002. These two 
acts of Congress were meant to fund two different types of partnerships 
to achieve the overall goal of highly qualified math and science 
teachers ensuring that all students have the basic knowledge to compete 
in the ever changing and competitive job market. The funds allocated 
for the NSF's MSPs go to the highest quality proposals chosen through a 
competitive peer-reviewed grant program. The program focuses on 
modeling, testing and identification of effective math-science 
activities. The funds allocated for the Department of Education MSPs go 
directly to the states as formula grants, providing funds to all states 
to replicate and then implement the best of the NSF partnerships 
throughout the country. Once states receive the money, they make 
competitive grants to local partnerships.
    At a hearing in October 2003, the House Science Committee found 
that these new partnership programs are ``on the right track toward 
improving math and science education.'' Testifying before the 
committee, M. Susana Navarro, executive director of the El Paso 
Collaborative for Academic Excellence MSP, said: ``What the MSP now 
provides is an opportunity to bring together partners across the 
community, K-16, toward the shared development and implementation of 
high quality math and science content and instructional practices aimed 
at improving student achievement among all students.''
    Just 3 months after that hearing, President Bush released his 
budget proposal for fiscal year 2005, which phased out the NSF 
partnership programs and shifted the funding to the MSP companion 
program at the Department of Education. However, the $120 million 
increase requested for 2005 was not slated to fund additional MSPs on 
the local level; instead it would have financed a new program focused 
on accelerating the math education of secondary-school students, 
especially those who are at risk of dropping out of school because they 
lack basic skills in math.
    The Senate Labor, Health and Human Services and Education did not 
go along entirely with the President's plan last year. The MSPs would 
have received $200 million, 4.5 percent less than the President 
requested but $51 million or 34 percent more than fiscal year 2004 
funding in the Senate version of the bill. The report stated, ``These 
funds will be used to improve the performance of students in the areas 
of math and science by bringing math and science teachers in elementary 
and secondary schools together with scientists, mathematicians, and 
engineers to increase the teachers' subject-matter knowledge and 
improve their teaching skills.''
    We applauded the Subcommittee because it did not choose to fund 
math over science and, ultimately, Congress did not chose to fund math 
over science. In last year's omnibus bill, the Math and Science 
Partnership budget increased 16 percent over fiscal year 2004 levels to 
$179 million and none of those funds were set-aside for one subject.
    This year, the President has proposed something similar. The fiscal 
year 2006 budget proposal increases the MSPs to $269 million, an 
increase of $90.4 million, or 51 percent, over the fiscal year 2005 
level. Although a large increase has been proposed, the President's 
plan restricts $120 million for the Secondary Education Mathematics 
Initiative, a competitive grant program to be administered by the 
Department of Education. This creates a net decrease in funding 
available to the states in fiscal year 2006 compared to the fiscal year 
2005 allocations.
    The $120 million in funds for Secondary Education Mathematics 
Initiative is part of the overall High School Initiative, which will 
expand the application of No Child Left Behind principles to improve 
high school education and raise achievement, particularly the 
achievement of students most at risk of failure. This new initiative 
combines a number of categorical programs in order to give states and 
districts more flexibility and contains stronger accountability 
mechanisms.
    AGI believes the two MSPs are the most effective approach to 
rapidly improving the abilities of all students to enhance their future 
prospects regardless of their ultimate career goals. The two programs, 
designed and authorized by Congress, are complementary. AGI supports 
funding at NSF for competitive grants for teaching tools and teacher 
training and funding at the Department of Education for formula grants 
for implementation of these tools in K-12 education. The peer-review 
process in the NSF program should be safeguarded as should the formula 
grants for all states as administered by the Department of Education. 
Moreover, the program within the Department of Education should not 
suffer a net reduction in funding in order to support a new initiative 
for mathematics. These funds should serve the Math and Science 
Partnership with no earmarks or set-asides.
    Thank you for the opportunity to present this testimony to the 
Subcommittee. If you would like any additional information, please 
contact me at 703-379-2480, ext. 228 voice, 703-379-7563 fax, 
[email protected], or 4220 King Street, Alexandria VA 22302-1502.
                                 ______
                                 
 Prepared Statement of the American Indian Higher Education Consortium

    Mr. Chairman and Members of the Subcommittee, on behalf of this 
Nation's 34 Tribal Colleges and Universities (TCUs), which compose the 
American Indian Higher Education Consortium (AIHEC), thank you for the 
opportunity to share our fiscal year 2006 funding requests for programs 
within the U.S. Department of Education, and the U.S. Department of 
Health and Human Services--Head Start program.
    This statement will cover two areas: (a) background on the tribal 
colleges, and (b) justifications for our funding recommendations.

                    I. BACKGROUND ON TRIBAL COLLEGES

    The Tribal College Movement began in 1968 with the establishment of 
Navajo Community College, now Dine College, in Tsaile, Arizona. Rapid 
growth of tribal colleges soon followed, primarily in the Northern 
Plains region. In 1972, the first six tribally controlled colleges 
established AIHEC to provide a support network for member institutions. 
Today, AIHEC represents 34 Tribal Colleges and Universities located in 
12 states, which were begun specifically to serve the higher education 
needs of American Indians. Annually, these institutions serve upwards 
of 30,000 full-and part-time students from over 250 Federally-
recognized tribes.
    Currently, all but one of our colleges is accredited by 
independent, regional accreditation agencies and like all institutions 
of higher education, must undergo stringent performance reviews on a 
periodic basis to retain their accreditation status. In addition to 
college level programming, TCUs provide much needed high school 
completion (GED), basic remediation, job training, college preparatory 
courses, and adult education. Tribal colleges fulfill additional roles 
within their respective reservation communities functioning as 
community centers, libraries, tribal archives, career and business 
centers, economic development centers, public-meeting places, and child 
care centers. Each TCU is committed to improving the lives of its 
students through higher education and to moving American Indians toward 
self-sufficiency.
    Tribal colleges provide access to higher education for American 
Indians and others living in some of this Nation's most rural and 
economically depressed areas. These institutions, chartered by their 
respective tribal governments, were established in response to the 
recognition by tribal leaders that local, culturally based institutions 
are best suited to help American Indians succeed in higher education. 
TCUs combine traditional teachings with conventional postsecondary 
courses and curricula. They have developed innovative means to address 
the needs of tribal populations and are successful in overcoming long-
standing barriers to higher education for American Indians. Since the 
first tribal college was established on the Navajo reservation, these 
vital institutions have come to represent the most significant 
development in the history of American Indian higher education, 
providing access to and promoting achievement among students who may 
otherwise never have known postsecondary education success.
    Despite their remarkable accomplishments, tribal colleges remain 
the most poorly funded institutions of higher education in the country. 
Persistently inadequate funding remains the most significant barrier to 
their success. Funding for basic institutional operations of 26 
reservation based colleges is provided through Title I of the Tribally 
Controlled College or University Assistance Act (Public Law 95-471). 
Funding under the Act was first appropriated in 1981. Almost 25 years 
later, the funding level is at just 75 percent of the authorized level 
of $6,000 per Indian student, which is defined as an enrolled member of 
a Federally recognized tribe. In fiscal year 2005, these colleges are 
receiving $4,447 per full-time equivalent Indian student toward their 
institutions operating budgets. While mainstream institutions have had 
a foundation of stable state tax-based support, TCUs must rely on year-
to-year Federal appropriations for their basic institutional operating 
funds. Because TCUs are located on Federal trust territories, states 
have no obligation to fund them even for the non-Indian state-resident 
students who account for approximately 20 percent of TCU enrollments. 
Yet, if these same students attended any other public institution in 
the state, the state would provide basic operating funds to the 
institution.
    Inadequate funding has left many of our colleges with no choice but 
to continue to operate under severely distressed conditions. Although 
facilities initiatives of the last few years have resulted in 
widespread renovation and construction at TCUs, many colleges began in 
surplus trailers; cast-off buildings; and facilities with crumbling 
foundations, faulty wiring, and leaking roofs, and therefore have a 
long way to go. Sustaining quality academic programs is a challenge 
without a reliable source of facilities maintenance and construction 
funding.
    As a result of more than 200 years of Federal Indian policy--
including policies of termination, assimilation and relocation--many 
reservation residents live in abject poverty comparable to that found 
in Third World nations. Through the efforts of tribal colleges, 
American Indian communities receive services they need to reestablish 
themselves as responsible, productive, and self reliant.

                           II. JUSTIFICATIONS

A. Higher Education Act
    The Higher Education Act Amendments of 1998 created a separate 
section within Title III, Part A, specifically for the Nation's Tribal 
Colleges and Universities (Section 316). Titles III and V programs 
support institutions that enroll large proportions of financially 
disadvantaged students and have low per-student expenditures. TCUs 
clearly fit this definition as they are among the most poorly funded 
institutions in America, yet they serve some of the most impoverished 
areas of the country. TCUs are victims of their own success. This year 
two new tribal colleges are eligible to compete for funding under Title 
III. Despite the increase in the size of the pool of eligible 
institutions, the President's fiscal year 2006 Budget recommends level 
funding for this vital program. We urge the Subcommittee to fund 
section 316 at $32 million, an increase of $8.2 million over fiscal 
year 2005 and the President's request, and we ask that report language 
included in since fiscal year 2003 be restated clarifying that funds 
not needed to support continuation grants or new planning or 
implementation grants be available for facilities renovation and 
construction grants.
    The importance of Pell grants to our students cannot be overstated. 
Department of Education figures show that at the majority of all tribal 
college students receive Pell grants, primarily because student income 
levels are so low and our students have far less access to other 
sources of aid than students at mainstream institutions. Within the 
Tribal College system, Pell grants are doing exactly what they were 
intended to do--they are serving the needs of the lowest income 
students by helping people gain access to higher education and become 
active, productive members of the workforce. We urge Congress to fund 
this critical program at the highest possible level.
B. Carl D. Perkins Vocational & Applied Technology Education Act
    Tribally-Controlled Postsecondary Vocational Institutions.--Section 
117 of the Perkins Act provides basic operating funds for two of our 
member institutions: United Tribes Technical College in Bismarck, North 
Dakota, and Crownpoint Institute of Technology in Crownpoint, New 
Mexico. We urge that Congress fund this program at $8.5 million. 
Included in both the House and Senate reauthorization bills, which are 
being considered in the 109th Congress is language waiving section 117 
grantees from having to utilize a restricted indirect cost rate, since 
the timeline for enactment of the reauthorizing legislation is 
uncertain, we ask that you reiterate the language that has been 
included in this appropriations measure since fiscal year 2002 stating 
that Section 117 Perkins grantees need not utilize restricted indirect 
cost rate.
    The President's fiscal year 2006 budget once again proposes the 
elimination of the Native American Program Section 116, which reserves 
1.25 percent of appropriated funding to support Indian vocational 
programs. We strongly urge Congress to continue this program, which is 
vital to the survival of vocational education programs being offered at 
TCUs.
C. Greater Support of Indian Education Programs
    American Indian Adult and Basic Education.--This section supports 
adult education programs for American Indians offered by TCUs, state 
and local education agencies, Indian tribes, institutions, and 
agencies. Despite a lack of funding, TCUs must find a way to continue 
to provide basic adult education classes for those Indians that the 
present K-12 Indian education system has failed. Before many 
individuals can even begin the course work needed to learn a productive 
skill, they first must earn a GED or, in some cases, learn to read. 
According to a 1995 survey conducted by the Carnegie Foundation for the 
Advancement of Teaching, 20 percent of the participating students had 
completed a tribal college GED program before beginning higher 
education classes at the tribal college. At some schools, the 
percentage is even higher. Clearly, there is a tremendous need for 
basic educational programs, and TCUs need funding to support these 
crucial activities. Tribal colleges respectfully request that Congress 
appropriate $5 million to meet the ever increasing demand for basic 
adult education and remediation program services.
    American Indian Teacher Corps.--American Indians are severely 
under-represented in the teaching and school administrator ranks 
nationally. These competitive programs, aimed at producing new American 
Indian teachers and school administrators for schools serving American 
Indian students, support the recruitment, training, and in-service 
professional development programs for Indians to become effective 
teachers and school administrators, and in doing so excellent role 
models for Indian children. We believe that the TCUs are the ideal 
catalysts for these initiatives because of our current work in this 
area and the existing articulation agreements TCUs hold with 4-year 
degree awarding institutions. We request that Congress support these 
programs at $10 million and $5 million, respectively, to increase the 
number of qualified American Indian teachers and school administrators 
in Indian Country.
D. Department of Health and Human Services/Administration for Children 
        & Families/Head Start
    Tribal Colleges and Universities (TCU) Head Start Partnership 
Program.--The TCU/Head Start partnership has made a lasting investment 
in our Indian communities by creating and enhancing associate degree 
programs in Early Childhood Development and related fields. New 
graduates of these programs can help meet the mandate that 50 percent 
of all program teachers earn an associate degree in Early Childhood 
Development or a related discipline. More importantly, this program has 
afforded American Indian children Head Start programs of the highest 
quality. A clear impediment to the ongoing success of this partnership 
program is the erratic availability of discretionary funding made 
available for the TCU/Head Start partnership. Since fiscal year 1999, 
the first year of the program, a total of just 15 tribal colleges have 
been able to participate in this valuable program. Some colleges were 
awarded 3-year grants, others 5-year grants, and in fiscal year 2002 
there were no new grants funded at all. In fiscal year 2003, funding 
for eight new grants was made available, but in fiscal year 2004, only 
two new awards could be made because of the lack of adequate funds. The 
President's fiscal year 2006 budget includes a total request of $6.9 
billion for Head Start Programs. We request Congress direct the Head 
Start Bureau to designate a minimum of $5 million for the TCU/Head 
Start Partnership program, to ensure that this critical program can be 
continued and be expanded so that all TCUs might participate in the 
TCU- Head Start partnership program.

                            III. CONCLUSION

    Tribal colleges and universities are bringing education to 
thousands of American Indians. The modest Federal investment in the 
TCUs has paid great dividends in terms of employment, education, and 
economic development, and continuation of this investment makes sound 
moral and fiscal sense. Tribal colleges need your help if they are to 
sustain and grow their programs and achieve their missions.
    Thank you again for this opportunity to present our funding 
recommendations. We respectfully ask the Members of this Subcommittee 
for their continued support of the Nation's tribal colleges and 
universities and full consideration of their fiscal year 2006 
appropriations needs and recommendations.
                                 ______
                                 
 Prepared Statement of the Association of Minority Health Professions 
                                Schools

    Mr. Chairman, thank you very much for the opportunity to present 
the views of the Association of Minority Health Professions Schools 
(AMHPS). I am Dr. John E. Maupin, President of Meharry Medical College 
in Nashville, Tennessee and President of AMHPS.
    AMHPS is comprised of the nation's 12 historically black medical, 
dental, pharmacy, and veterinary. Combined, our institutions have 
graduated 50 percent of African-American physicians and dentists, 60 
percent of all the nation's African-American pharmacists, and 75 
percent of the African-American veterinarians.
    Mr. Chairman, historically black health professions institutions 
are addressing a pressing national need in carrying out their mission 
of training minorities in the health professions. While African-
Americans represent approximately 15 percent of the U.S. population, 
only 2-3 percent of the nation's health professions workforce is 
African-American. Studies have demonstrated that when African Americans 
and other minorities are trained in minority institutions, they are 
much more likely to: (1) serve in medically underserved areas, (2) care 
for minorities, and (3) accept patients who are Medicaid dependent or 
otherwise poor.
    This is important Mr. Chairman because the gap in health status 
between our nation's minority and majority populations continues to 
widen due in part to the lack of access to quality health care services 
in minority communities. As a result, we believe it is imperative that 
the federal commitment to training African Americans and other 
minorities in the health professions remains strong.
    In spite of our proven success in training health professionals, 
and the important contribution these professionals make, our 
institutions continue to face a financial struggle inherent to our 
mission. The financial challenges facing the majority of our students 
affect our institutions in numerous ways. For example, we are unable to 
depend on tuition as a means by which to respond to any discontinuation 
of federal support. Moreover, the patient populations served by the 
AMHPS institutions are overwhelmingly poor. As a result, our 
institutions cannot rely on patient care income at a time when the 
average medical school gets 40-60 percent of its operating revenue from 
health care services.
    Mr. Chairman, before I present AMHPS's appropriations 
recommendations for fiscal year 2006, I would like to express my 
sincere appreciation for your leadership in restoring funding for the 
Health Resources and Services Administration's health professions 
training programs in fiscal year 2005. For many of our schools, support 
from these programs represent the difference between our doors being 
open or closed. We cannot overstate our gratitude for your leadership 
in this area.

 FISCAL YEAR 2006 RECOMMENDATIONS FOR FEDERAL PROGRAMS OF INTEREST TO 
                                 AMHPS

Health Resources and Services Administration
            Health Professions Training
    The health professions training programs administered by the Health 
Resources and Services Administration are the only federal initiatives 
designed to address the longstanding under-representation of minority 
individuals in health careers. HRSA's Minority Centers of Excellence, 
Health Careers Opportunity Program, and Scholarships for Disadvantaged 
Students, support health professions institutions with a historic 
mission and commitment to increasing the number of minorities in the 
health professions.
    Mr. Chairman, our schools and students greatly appreciate the 
subcommittee's consistent support of these important programs. However, 
we are very disappointed that the administration's budget all but 
eliminates funding again this year for health professions programs 
focused on diversity in the workforce. For fiscal year 2006, AMHPS 
joins with the Health Professions Nursing and Education Coalition in 
recommending a funding level of at least $300 million for Title VII 
health professions training programs.
    For the health professions programs specifically focused on 
enhancing minority representation in the health care workforce AMHPS 
recommendations are as follows:
            Minority Centers of Excellence
    The purpose of the Minority Centers of Excellence program (COE) is 
to assist schools that train minority health professionals by 
supporting programs of excellence in health professions education at 
those institutions. The COE program focuses on improving student 
recruitment and performance; improving curricula and cultural 
competence of graduates; facilitating faculty/student research on 
minority health issues; and training students to provide health 
services to minority individuals by providing clinical teaching at 
community-based health facilities.
    For fiscal year 2006, AMHPS recommends a funding level of $40 
million for Minority Centers of Excellence (an increase of $6.1 million 
over fiscal year 2005).
            Health Careers Opportunity Program
    Grants made to health professions schools and educational entities 
under the Health Careers Opportunity Program (HCOP) enhance the ability 
of individuals from disadvantaged backgrounds to improve their 
competitiveness to enter and graduate from health professions schools. 
HCOP funds activities that are designed to develop a more competitive 
applicant pool through partnerships with institutions of higher 
education, school districts, and other community based entities. HCOP 
also provides for mentoring, counseling. primary care exposure 
activities and information regarding careers in a primary care 
discipline. Sources of financial aid are provided to students as well 
as assistance in entering into the health professions school
    For fiscal year 2006, AMHPS recommends a funding level of $40 
million for the Health Careers and Opportunities Program (an increase 
of $4.1 million over fiscal year 2005).
            Scholarships for Disadvantaged Students
    The Scholarships for Disadvantaged Students program was established 
to make scholarship funds available to eligible students from 
disadvantaged backgrounds who are enrolled (or accepted for enrollment) 
as full-time students. To be eligible for funding, a school must have 
in place a program to recruit and retain students from disadvantaged 
backgrounds (including racial and ethnic minorities) and demonstrate 
that the program has achieved success based on the number or percentage 
of disadvantaged students who graduate from the school.
    For fiscal year 2006, AMHPS recommends a funding level of $55 
million for the Scholarships for Disadvantaged Students program (an 
increase of $7.5 million over fiscal year 2005).

                   HEALTHY COMMUNITIES ACCESS PROGRAM

    Mr. Chairman, as you know, Congress passed legislation last year in 
2003 to reauthorize the Community Health Centers program. Included in 
this important measure was a provision which established a 
demonstration authority within the Healthy Community Access Program to 
foster greater collaboration between historically black health 
professions and federally qualified CHC's. Specifically, this 
provision:
    (1) Establishes a demonstration program for the development of 
research infrastructure at historically black health professions 
schools affiliated with federally qualified Community Health Centers.
    (2) Establishes joint and collaborative programs of medical 
research and data collection between historically black health 
professions schools and federally qualified Community Health Centers 
with the goal of improving the health status of medically underserved 
populations.
    (3) Supports the cost of patient care, data collection, and 
academic training resulting from these partnerships.
    Mr. Chairman, Meharry Medical College and other members of our 
Association successfully applied for funding under this new 
demonstration authority in fiscal year 2005. These funds are making an 
important contribution at all of our institutions. For fiscal year 
2006, we encourage the subcommittee to restore funding for the Health 
Communities Access Program to $83 million.

                     NATIONAL INSTITUTES OF HEALTH

The National Center on Minority Health and Health Disparities
    Established in 2000 by the Minority Health and Health Disparities 
Research and Education Act (Public Law 106-525), the National Center on 
Minority Health and Health Disparities at NIH is charged with 
addressing the longstanding health status gap between minority and 
majority populations. The National Center has the authority to:
  --Directly support biomedical research, training, and information 
        dissemination focused on eliminating health status disparities.
  --Serve in a leadership capacity in developing a comprehensive plan 
        for minority health research at NIH.
  --Participate as an equal when NIH institute and center directors 
        meet to determine research policy.
  --Support the enhancement of biomedical research capacity at minority 
        health professions institutions through a ``Research 
        Endowment'' program.
  --Support the development of health professions institutions with a 
        history and mission of serving minority and medically 
        underserved communities through a ``Centers of Excellence'' 
        program.
    For fiscal year 2006, AMHPS recommends a funding level of $250 
million for the National Center. This is an increase of $53 million. 
This new funding will enable the Center to support all of its new 
programs and begin to meet the challenge of eliminating health status 
disparities within minority and medically underserved communities.
Extramural Facilities Construction
    Mr. Chairman, if we are to take full advantage of the historic 
increases in biomedical research funding that Congress has provided to 
NIH, it is critical that our nation's research infrastructure remain 
strong.
    Under legislation passed in 2001, the authorization level for the 
Extramural Facility Construction program at the National Center for 
Research Resources was increased from $150 million to $250 million. In 
addition, the law maintains the 25 percent set-aside for Institutions 
of Emerging Excellence (many of which are minority institutions) for 
funding up to $50 million and allows the NCRR director to waive the 
matching requirement for participation in the program.
    Unfortunately, funding for the Extramural Facility Construction 
program was cut from $119 million in fiscal year 2004 to $30 million in 
fiscal year 2005. AMHPS encourages the subcommittee to prioritize 
support for this important program in fiscal year 2006 by restoring 
funding to the fiscal year 2004 level.
Research Centers at Minority Institutions
    The Research Centers at Minority Institutions program (RCMI) at the 
National Center for Research Resources has a long and distinguished 
record of helping our institutions develop the research infrastructure 
necessary to be leaders in the area of health disparities research. 
Although NIH has received unprecedented budget increases in recent 
years, funding for the RCMI program has not increased by the same rate. 
Therefore, AMHPS recommends that funding for this important program 
grow at the same rate as NIH overall in fiscal year 2005.

 STRENGTHENING HISTORICALLY BLACK GRADUATE INSTITUTIONS--DEPARTMENT OF 
                               EDUCATION

    The Department of Education's Strengthening Historically Black 
Graduate Institutions program (Title III, Part B, Section 326) is 
extremely important to AMHPS institutions. The funding from this 
program is used to enhance educational capabilities, establish and 
strengthen program development offices, initiate endowment campaigns, 
and support numerous other institutional development activities.
    For fiscal year 2006, AMHPS recommends an appropriation of $65 
million (an increase of $6.5 million over fiscal year 2005) to continue 
the vital support that this program provides to historically black 
graduate institutions.

                     HHS OFFICE OF MINORITY HEALTH

    The HHS Office of Minority Health (OMH) has the potential to play a 
critical role in addressing health status disparities throughout the 
country. Unfortunately, the office does not currently have the 
authority or resources necessary to support activities that will truly 
make a difference in closing the health gap between minority and 
majority populations. For fiscal year 2006, AMHPS recommends a funding 
level of $65 million for the Office, with $10 million designated for 
the following programs focused on medically underserved communities and 
capacity building for the training of minorities in health professions:
    (1) OMH sponsored programs to assist medically underserved 
communities with the greatest need in solving health disparities and 
attracting and retaining health professionals;
    (2) Assistance to minority institutions in acquiring real property 
to expand their campuses to increase the capacity to train minorities 
for medical careers;
    (3) Support of conferences for high school and undergraduate 
students to pursue health professions careers; and
    (4) Support for cooperative agreements with minority institutions 
for the purpose of strengthening their capacity to train more 
minorities in the health professions.
    Once again, thank you for the opportunity to present the views of 
the Association of Minority Health Professions Schools. We look forward 
to working with you in support of these important programs.
                                 ______
                                 
    Prepared Statement of the Association of University Centers on 
                              Disabilities

    Mr. Chairman, on behalf of the Association of University Centers on 
Disabilities, I am pleased to submit this written testimony for the 
record both as a means to thank you for the Committee's support of our 
Centers in fiscal year 2005, and as a way of alerting you to the 
exciting developments happening now across the national network of 
University Centers for Excellence in Developmental Disabilities, 
Education, Research and Service (UCEDDs). The network of UCEDDs is a 
showcase for unique and effective models for developing approaches and 
gathering new knowledge in the field of developmental disabilities and 
sharing this knowledge both nationally and internationally, as well as 
in our own states to improve the lives of people with developmental and 
other disabilities. I am Fred Palmer, Director of the Boling Center for 
Developmental Disabilities, Tennessee's University Center for 
Excellence in Developmental Disabilities at the University of Tennessee 
Health Science Center, and President of the Association of University 
Centers on Disabilities.
    The mission of the UCEDDs is to advance policy and practice, for 
and with people with developmental and other disabilities, their 
families and communities. As a network of 61 interdisciplinary Centers 
across the United States and its Territories, we work to ensure full 
participation in all aspects of living for individuals with 
disabilities.
    Since the early 1960s, when Congress established a small number of 
research centers to study mental retardation, we have grown into a 
national network where each University Center has developed its own 
area(s) of expertise based on the needs of the local community, state, 
and evolving expectations of people with disabilities nationwide to be 
more included in community life. Authorized by the Developmental 
Disabilities Assistance and Bill of Rights Act (Public Law 106-402) we 
currently focus our work on serving as a national education and 
training, service and information resource and research entity for our 
nation.
    We are extremely grateful that in fiscal year 2005, the Congress 
increased funding for the UCEDDs by $5 million, bringing our current 
funding to $31.5 million. This increase has provided us with an 
opportunity that has not existed in over a decade--the opportunity to 
increase the number of Centers in our network in order to better serve 
people with disabilities. With this money, we will establish three new 
Centers in states where there is a large minority population and/or 
difficulties reaching people with disabilities due to geographic 
hardships. The increased funding also provides each current Center with 
additional dollars to conduct research and provide community supports 
and services as outlined in the DD Act, essentially funding each 
current Center at the level authorized in 2000. Additionally, the 
increased funding allows the Administration on Developmental 
Disabilities to compete one or two small National Training Initiative 
grants which allow the grantee to conduct community-based training on a 
topical area of national significance.
    We are respectfully seeking an appropriation of $37 million for the 
network of Centers for fiscal year 2006. This increase will allow 
funding for the three new Centers to be increased to the same funding 
as the existing 61 Centers, as well as to continue our ability to 
establish additional Center grants in the five states that currently 
have unserved and underserved populations, and support for four new 
Centers that specialize in minority health disparities and education 
issues.
    AUCD believes that all people with disabilities must have the 
opportunity to maximize their potential, and have equal and meaningful 
access to all programs that help people be part of community life. We 
have been honored and pleased to work with President Bush and his 
Administration to carry out initiatives established in the New Freedom 
Initiative. Through Executive Order 12317, ``Community-Based 
Alternatives for Individuals with Disabilities'' we are working at the 
state and national level to implement programs and secure funding to 
rebalance the system of care for individuals with disabilities and 
their families. We believe that the country is at a turning point in 
time that can truly change the way that individuals with disabilities 
are perceived and treated. By helping states rebalance their service 
systems to serve people in the community first, as opposed to 
institutional settings, we are truly working to achieve the President's 
goals set forward in the Executive Order.
    The UCEDDs focus their work in a concerted effort through the areas 
of education and training at the university and community level; 
research, both basic and applied; and service provision at the 
individual and family level. Please allow me this opportunity to 
provide you with some examples.
    Education.--Quality of life in the community for individuals with 
disabilities depends upon well-trained professionals. Positioned within 
the university, UCEDDs educate professionals-in-training in 
interdisciplinary approaches and provide continuing education for 
professionals practicing in multiple fields relating to disabilities. 
Whether the focus is on leadership, direct service, clinical or other 
personnel training, these pre-service and continuing education programs 
are geared to the needs of students, fellows, and practicing 
professionals and have been essential in raising and defining the 
educational standards of service across health, education, employment 
and social service systems. Further, they have increased the capacity 
of States to be responsive to the needs of individuals with 
disabilities.
    Each year, UCEDDs provide education and training to approximately 
500,000 health, education, mental health, and policy-making 
professionals, as well as people with disabilities and their families. 
UCEDDs in communities nationwide provide this essential education and 
training.
    For example, one issue that Centers focus on nationally is positive 
behavioral supports. One UCEDD in Oregon houses the Center on Positive 
Behavioral Intervention and Support. The Center assists local schools 
in identifying, adapting, and sustaining effective behavioral 
practices, including school-wide discipline programs. Results from 
their replication efforts in over 400 schools nationwide indicate that 
their technical assistance and research has enhanced schools' capacity 
to address behavioral challenges, diminish disruptions, reclaim 
instructional time, and enhance quality and effectiveness of 
instruction.
    Through a partnership with the Centers for Disease Control and 
Prevention (CDC), the network of UCEDDs are designing and disseminating 
training materials on Down Syndrome and Spina Bifida. Educational 
modules are being designed for use in medical schools for training 
physicians in recognition and recommended treatments for these two 
conditions. Materials from these efforts will be disseminated to 
medical schools throughout the country.
    Research.--UCEDDs engage in cutting edge research on a wide variety 
of issues related to individuals with developmental disabilities and 
their families. From basic research to applied research and policy 
analysis, University Centers work to link research to public policy and 
professional practice. By studying areas such as brain development, 
autism spectrum disorders, and early literacy, UCEDD researchers are 
learning how children and adults learn and how best to teach them. 
UCEDDs lead in developing and evaluating new ideas and promising 
practices that improve the lives of children and adults with 
disabilities and their families and increase their access to quality 
services. Many participate in federally established research projects 
to study and disseminate information on the causes and prevention of 
disabilities and chronic conditions.
    One example of how research impacts upon policy and practice is a 
collaborative effort between one UCEDD and its state Department of 
Education and Department of Health and Human Services. Together they 
are studying the issues of access to, and retention in, high quality 
childcare for all children throughout the state. This multi-year, 
interdepartmental initiative is studying ways to develop a coordinated 
system of inclusive childcare and early education for all children, 
including those who are at risk due to poverty, disability, social-
emotional and behavioral challenges, abuse, or language and cultural 
differences. By implementing and studying various systems of support 
for childcare providers, the UCEDD will be able to inform policymakers 
in areas such as staff development and retention of childcare staff, 
providing childcare support to TANF families, inclusive childcare 
support for children with disabilities, and supporting children in 
foster care.
    Service.--UCEDDs provide direct services and supports to people 
with developmental and other disabilities, their families, and 
communities, including state-of-the-art diagnosis, evaluation, and 
support services for children and adults with disabilities in health 
care, cognitive development, behavior disorders, education, daily 
living, and work skills. Moreover, through technical assistance to 
other providers, they magnify the impact of their programs, reducing 
disparities among individuals and communities.
    In Ohio, one UCEDD is working with families living in rural 
counties of Ohio who encounter many barriers to accessing quality care 
for their children. Because most services for children with 
disabilities are in urban areas, families in Appalachia were traveling 
100 miles to the city for multiple evaluations by individual 
disciplines. This resulted in a great expense in time and money for the 
family. The Center now sends teams of providers to rural areas to 
provide interdisciplinary care to families. They provide evaluation of 
children, training for local healthcare providers, and support for the 
families through a system of rural clinics. These clinics are improving 
access of needed services to families and providers and help local 
providers to better diagnose developmental disabilities such as 
cerebral palsy, fetal alcohol syndrome, autism and other genetic 
disorders.
    UCEDDs also lead in improving the lives of people with disabilities 
through new technologies. More than 20 UCEDDs including those in 
Pennsylvania, Iowa, Texas, and Utah provide services that help 
individuals assess their technology needs and get the equipment they 
need to read, hear, speak, write, learn, work, play, and fully 
participate in their communities.
    Responding to National Needs.--UCEDDs are equipped to respond 
quickly to emerging national needs. We are currently expanding our work 
in the area of aging and disability. As we continue to see people with 
disabilities living longer, aging parents need community support to 
ensure the safety and well-being of their adult aged children when they 
can no longer care for them and communities must be prepared. UCEDDs 
are working in communities on many aging-related projects and working 
with the White House Conference on Aging to ensure that aging and 
disability is part of the national dialogue. We continue to work with 
the federal government on policies and initiatives on emergency 
preparedness for people with developmental and other disabilities 
sharing much of our expertise and experience that came with the 
September 11 disaster. Other national issues that have been addressed 
by UCEDDs have included treatment and diagnosis of Autism and Related 
Spectrum Disorders, reading disorders in children, design and 
dissemination of training programs for direct support personnel in 
developmental disabilities, provision of training in methods to support 
employment for individuals with disabilities and improvement of housing 
options for individuals with disabilities and their families.
    I again ask that you consider our request for $37 million for the 
network of UCEDDs so that we may expand our network to more adequately 
serve our nation's growing population of Americans with developmental 
and related disabilities and to address our nation's health 
disparities.
    Thank you for the opportunity to share this information about the 
UCEDDs. Your careful consideration of our appropriation requests is 
appreciated and we are happy to share more detailed information with 
you at your request.
                                 ______
                                 
 Prepared Statement of the Charles R. Drew University of Medicine and 
                                Science

            SUMMARY OF RECOMMENDATIONS FOR FISCAL YEAR 2006

    1. A 6 percent increase for all institutes and centers at the 
National Institutes of Health (NIH), specifically the National Center 
for Research Resources (NCRR), the National Center for Minority Health 
and Health Disparities (NCMHD), and the National Cancer Institute 
(NCI).
    2. Urge NCI to continue to support the establishment of 
collaborative minority health comprehensive cancer centers at 
historically minority institutions in collaboration with existing NCI 
cancer centers. Continue to urge NCRR and NCMHD to collaborate on the 
establishment of a cancer center at a historically minority 
institution.
    3. Urge the Department of Health and Human Services, particularly 
the Office of Minority Health (OMH), to develop a focused effort on 
faculty support to address the residency training programs at minority 
medical institutions.
    Mr. Chairman and members of the subcommittee, thank you for the 
opportunity to present you with testimony. Charles R. Drew University 
is one of four predominantly minority medical schools in the country, 
and the only one located west of the Mississippi River.
    Charles R. Drew University of Medicine and Science is located in 
the Watts-section of South Central Los Angeles, and has a mission of 
rendering quality medical education to underrepresented minority 
students, and, through its affiliation with the University of 
California Los Angeles (UCLA) at the co-located King-Drew Medical 
Center, Drew provides valuable health care services to the medically 
underserved community. Through innovative basic science, clinical, and 
health services research programs, Drew University works to address the 
health and social issues that strike hardest and deepest among inner 
city and minority populations.
    The population of this medically underserved community is 
predominately African American and Hispanic. Many of these people would 
be without health care if not for the services provided by the King-
Drew Medical Center and Charles R. Drew University of Medicine and 
Science. This record of service has led Charles R. Drew University (in 
partnership with UCLA School of Medicine) to be designated as a Health 
Resources and Services Administration Minority Center of Excellence.

                    A RESPONSE TO HEALTH DISPARITIES

    Racial and ethnic disparities in health outcomes for a multitude of 
major diseases in minority and underserved communities continue to 
plague this nation that was built on a premise of equality. As 
articulated in the Institute of Medicine report entitled ``Unequal 
Treatment: Confronting Racial and Ethnic Disparities in Health Care'', 
this problem is not getting better on its own. For example, African 
American males develop cancer fifteen percent more frequently than 
white males. Similarly, African American women are not as likely as 
white women to develop breast cancer, but are much more likely to die 
from the disease once it is detected. In fact, according to the 
American Cancer Society, those who are poor, lack health insurance, or 
otherwise have inadequate access to high-quality cancer care, typically 
experience high cancer incidence and mortality rates. Despite these 
devastating statistics, we are still not doing enough to try to combat 
cancer in our communities.
    In response to these findings and the high cancer rate in our own 
community, Charles R. Drew University of Medicine and Science proposes 
that a Minority Health Comprehensive Cancer Center be built on its 
campus.
    The Center would specialize in providing not only medical treatment 
services for the community, but would also serve as a research 
facility, focusing on prevention and the development of new strategies 
in the fight against cancer.
    Mr. Chairman, the support that this subcommittee has given to the 
National Institutes of Health (NIH) and its various institutes and 
centers has and continues to be invaluable to our University and our 
community. The dream of a state of the art facility to aid in the fight 
against cancer in our underserved community would be impossible without 
the resources of NIH.
    To help facilitate the establishment of a Minority Health 
Comprehensive Cancer Center at Charles R. Drew University of Medicine 
and Science, the University is seeking support from the National 
Institutes of Health's National Center for Research Resources (NCRR), 
the National Center for Minority Health and Health Disparities (NCMHD), 
and the National Cancer Institute (NCI).

           ACADEMIC RENEWAL AND CLINICAL FACULTY RECRUITMENT

    Some of the major challenges faced in sustaining high quality 
graduate medical education programs in ``safety-net'' medical centers 
with missions focused on the medically underserved, are directly 
related to the lack of sufficient numbers of clinical faculty highly 
trained in academic medicine. To address these challenges, a plan for 
academic enrichment is proposed.
    The plan is a strategic initiative to position Charles R. Drew 
University in the first decade of the 21st Century, as a leader in 
Urban Academic Health Sciences with an emphasis on training physicians 
and other health professionals to meet the needs of the medically 
underserved. The Plan for Academic Enrichment is an opportunity to 
enhance the impact of Charles R. Drew University as a national center 
of excellence in meeting the national, state, and local challenge of 
preparing a diverse complement of excellent physicians and other health 
professionals to close the health disparity gap by affording culturally 
sensitive quality care to the medically underserved and economically 
disadvantaged. A central component of the plan is the enrichment of 
academic excellence through the recruitment of new, highly qualified 
clinical teaching faculty, with solid research skills, to be members of 
the Charles R. Drew College of Medicine faculty to strengthen both the 
graduate and undergraduate medical education programs.

                               CONCLUSION

    Despite our knowledge about racial/ethnic, socio-cultural and 
gender-based disparities in health outcomes, the ``gap'' continues to 
widen in most instances. Not only are minority and underserved 
communities burdened by higher disease rates, they are less likely to 
have access to quality care upon diagnosis. As you are aware, in many 
minority and underserved communities preventive care and/or research is 
completely inaccessible either due to distance or lack of facilities 
and expertise. This is a critical loss of untapped potential in both 
physical and intellectual contributions to the entire society.
    Even though institutions like Drew are ideally situated (by 
location, population, and institutional commitment) for the study of 
conditions in which health disparities have been well documented, 
research is limited by the paucity of appropriate research facilities. 
With your help, this cancer center will facilitate translation of 
insights gained through research into greater understanding of 
disparities in cancer incidence, morbidity and mortality and ultimately 
to improved outcomes.
    We look forward to working with you to lessen the burden of cancer 
for all Americans through greater understanding of cancer, its causes, 
and its cures. We also look forward to working with the Department of 
Health and Human Services to address the residency training program 
issues at Charles R. Drew University.
    Mr. Chairman, thank you for the opportunity to present on behalf of 
Charles R. Drew University of Medicine and Science.
                                 ______
                                 
Prepared Statement of the Council of State Administrators of Vocational 
                         Rehabilitation (CSAVR)

    Mr. Chairman and Members of the Senate Appropriations Subcommittee: 
This testimony is submitted on behalf of the Council of State 
Administrators of Vocational Rehabilitation (CSAVR) in conjunction with 
the hearing held on March 2, 2005 before the Senate Subcommittee on 
Labor, Health and Human Services, Education and Related Agencies.
    The CSAVR is composed of the chief administrators of the State 
Vocational Rehabilitation (VR) Agencies serving individuals with 
physical and/or mental disabilities in the United States, the District 
of Columbia and the Territories. These agencies constitute the state 
partners in the State-Federal Program of Rehabilitation Services 
provided under Title 1 of the Rehabilitation Act of 1973, as amended. 
State VR agencies provide individualized services and supports to 
eligible individuals with significant disabilities that are required 
for them to go to work. These services may include, but are not limited 
to, counseling and guidance, job training, higher education, physical 
and mental restoration services, and assistive technology. Over 1 
million individuals with disabilities are served annually. In fiscal 
year 2004, these agencies placed over 213,000 individuals with 
disabilities into competitive employment.
    The CSAVR, founded in 1940 to furnish input into the State-Federal 
Rehabilitation Program, provides a forum for state administrators to 
study, deliberate, and act upon matters affecting the rehabilitation 
and employment of individuals with disabilities. The Council serves as 
a resource for the formulation and expression of the collective points 
of view of state rehabilitation agencies on all issues affecting the 
provision of quality employment and rehabilitation services to persons 
with significant disabilities.
    For fiscal year 2006, CSAVR recommends an increase in the 
Vocational Rehabilitation (VR) appropriation of $125 million above the 
President's budget request for fiscal year 2006. While the President's 
budget proposes a 3.2 percent increase in funding for the Public VR 
program, an increase of approximately 1.2 percent above the mandated 
CPI called for in law, this increase is based on the elimination of 
several smaller programs (Supported Employment (SE), Projects With 
Industry (PWI), and Migrant and Seasonal Farm Workers (MSFW), with an 
assumption that VR will continue to provide services, under Title 1 of 
the Rehabilitation Act, to the individuals previously served under 
these programs. The President's budget request for fiscal year 2006 is 
between $22 and $25 million less than the consolidated funding for 
these three programs; thus, VR would need additional funding for 
services to accommodate for the elimination of these programs. In 
addition to the proposed elimination of the SE, PWI, and MSFW programs, 
which CSAVR does not support, H.R. 27, the House bill to reauthorize 
the Workforce Investment Act (WIA), expands the requirements for VR to 
provide transition services to students with disabilities. CSAVR also 
anticipates that S. 9, the Senate bill to reauthorize the WIA, will 
include expanded transition requirements, when it is reintroduced as a 
free-standing bill. Based on the significant internal and external 
challenges facing the Public VR Program, (i.e., staffing shortages, 
state budget shortfalls, increased numbers of consumers seeking 
services, and increased service expectations, the CSAVR believes that 
an increased appropriation of $125 million above the President's budget 
request for VR, for fiscal year 2006, is an appropriate recommendation.

              THE PUBLIC VOCATIONAL REHABILITATION PROGRAM

    The Public VR Program is one of the most cost-effective programs 
ever created by Congress. It enables hundreds of thousands of 
individuals with disabilities to go to work each year and become tax-
paying citizens. In fiscal year 2004, the VR Program assisted over 1 
million individuals with disabilities who wanted to work, by providing 
them with the job skills, training and support services they needed to 
become employed. Of those served, more than 213,000 entered into 
competitive employment. Funding for the VR Program requires a state 
match of 21.3 percent, and creates a state-federal partnership that has 
worked effectively for more than 85 years, and has assisted over 15 
million individuals with disabilities to engage in employment and 
become tax-paying citizens.
    The Rehabilitation Act mandates that the annual Federal 
appropriation for the VR Program grow at a rate at least equal to the 
change in the Consumer Price Index (CPI) over the previous fiscal year. 
While the mandate was intended to create a floor for the VR 
appropriation, Congress has not appropriated funds above the mandated 
CPI increase since 1999. This is particularly problematic because the 
formula used to distribute these funds, which is based on a state's per 
capita income and population, results in significant variations in the 
increases in individual State's allotments. When the increase is 
limited to the CPI increase and the formula is applied, not all states 
receive increases that are equal to the annual rate of inflation. In 
fiscal year 2005, 30 states did not receive the 1.977 percent required 
CPI increase in their state allotment.

                CHALLENGES FACING THE PUBLIC VR PROGRAM

    Over the last several years, the Public VR Program has faced a 
number of external challenges that have been compounded by the minimal 
increases in Federal funding.
Special Education
    Between 1990 and 2004, the federal appropriation for special 
education increased by approximately 333 percent. During the same time 
period, the federal appropriation for the Public VR Program increased 
by only 22 percent. As a result of these very significant increases in 
special education funding, an ever-increasing number of special 
education students are exiting the education system and seeking adult 
services, including Vocational Rehabilitation, in order to participate 
in post secondary education, job training, and/or to go to work. In 
addition, the House passed the Job Training Improvement Act in March 
2005, which adds additional responsibilities to State VR agencies for 
the provision of transition services, beyond those presently required 
by current law. The Senate bill, S. 9, is also anticipated to add new 
transition responsibilities for VR when it is reintroduced. These 
additional requirements, if implemented effectively, will place a 
tremendous burden on the fiscal and personnel resources of State VR 
agencies, many of which are already sorely under-funded to meet the 
needs of adults with significant disabilities who are seeking 
employment.

Impact of the Workforce Investment Act of 1998 (WIA)
    The Public VR Program is a mandatory partner in the WIA and, as 
such, is required to contribute significant resources to support the 
infrastructure and other costs associated with the operation of the 
One-Stop Centers. While VR's involvement in State Workforce Investment 
Systems is critically important, WIA has placed yet another financial 
burden on an already strained program, further reducing the percentage 
of VR funds that are available to provide services and supports to 
eligible individuals with disabilities. In addition, the House bill to 
reauthorize the WIA, H.R. 27, proposes to take significant resources 
from the Public VR Program far beyond the resources contributed to the 
One-Stop Centers under current law. The Senate bill, S. 9, also 
requires additional resources from VR to fund the infrastructure costs 
and other common costs associated with the operation of One-Stop 
Centers.

Impact of the Ticket to Work and Work Incentives Improvement Act of 
        1999 (TWWIIA)
    The TWWIIA was designed to address disincentives to work found in 
the Social Security Disability Insurance Program (SSDI) and the 
Supplemental Security Income Program (SSI), and to increase employment 
opportunities for individuals enrolled in these programs. Research has 
shown that less than one-half of one percent of these individuals 
leaves the Social Security disability rolls each year as a result of 
paid employment. The provisions in TWWIIA that provide extended 
Medicare and Medicaid coverage to such individuals, when they enter or 
return to the workforce, are expected to encourage more beneficiaries 
to seek employment. Despite the establishment of a network of private 
providers to offer employment services to beneficiaries, the majority 
of beneficiaries, 90 percent, continue to seek services from State VR 
Agencies. With only minimal increases in VR funding over the last 
decade, this situation creates yet another challenge for the Public VR 
Program.

Temporary Assistance for Needy Families (TANF)
    Most states have had significant success in reducing their TANF, or 
welfare to work caseloads. While TANF caseloads have been shrinking, 
the composition of the remaining caseload has changed. A 2002 General 
Accounting Office (GAO) report found that individuals with disabilities 
and their family members represent approximately 44 percent of the 
remaining TANF population. Since many of these individuals have 
multiple and significant barriers to employment, state welfare agencies 
are increasingly turning to State VR Agencies for assistance in serving 
these individuals. With only minimal increases in funding, and 42 State 
VR Agencies operating under an Order of Selection, a system of 
prioritization whereby individuals with the most significant 
disabilities are served first, it is becoming increasingly difficult, 
if not impossible, for State VR Agencies to serve the increased numbers 
of TANF referrals.
    As stated earlier, the Public VR Program is one of the most cost-
effective programs ever created by Congress. Evidence of its success is 
further established by:
  --A 2002 Longitudinal Study of the Public VR Program which provided 
        evidenced based research that the VR Program is effective in 
        putting people with disabilities to work in good jobs with 
        opportunities for advancement.
  --A fiscal year 2005 Program Assessment Rating Tool (PART), developed 
        by the Office of Management and Budget (OMB) to rate program 
        performance, rated the VR Program favorably, and in general, 
        successful in meeting its program goal.
  --A report by the Social Security Administration, released annually, 
        that provides detailed information on the funds disbursed to 
        State VR Agencies, based on their successfully serving 
        beneficiaries on Social Security Disability Insurance (SSDI) 
        and Supplemental Security Income (SSI). In fiscal year 2004 SSA 
        projected a $470.3 million savings to the Trust Fund by the VR 
        Program, and established that every $1.00 that SSA spends on VR 
        results in a $6.00 savings.
    In this era of federal and state budget deficits, and an increase 
in the unemployment rate for individuals with disabilities, we urge you 
to consider an increase in funding for the Public VR Program, through 
which you can be assured to have positive outcomes, based on the three 
factors mentioned above.
    Our nation's ability to be competitive in a global economy depends 
on the quality of our workforce. According to a report released by the 
Department of Labor, Employment & Training Administration, during the 
fiscal year 2005 Budget Briefing, the American workforce will be vastly 
different than it is today, as the 21st century unfolds. Integrating 
all available workers into the workforce, including workers with 
significant disabilities, will be required for employers to meet the 
demands of the 21st century economy. Significant numbers of large and 
small employers have acknowledged that hiring individuals with 
disabilities makes good business sense. It provides them with 
dependable workers and access to a market of individuals with spending 
power, which has historically been untapped. These same employers also 
have long-standing, positive relationships with VR, to whom they look 
to provide them with qualified workers with disabilities. Integrating 
all available workers into the workforce, including workers with 
disabilities, will require significant resources. VR's positive 
relationships with employers, who rely heavily on the Public VR Program 
to meet their hiring needs, further emphasizes and documents the need 
for additional resources for VR.
                                 ______
                                 
       Prepared Statement of the Florida Department of Education

    Chairman Specter, and other distinguished members of the 
Subcomittee: My name is Carlos R. Saavedra. I am the Director of the 
Adult Migrant Program and Services Section of the Florida Department of 
Education and submit my testimony for consideration by the Subcommittee 
regarding the Workforce Investment Act, Title I, Section 167 National 
Farmworker Jobs Program. The Florida Department of Education is the 
grantee for the National Farmworker Jobs Program and has operated this 
program successfully for past years, under the aegis of the Office of 
Economic Development, the Comprehensive Employment and Training Act, 
and the Jobs Training Partnership Act.
    As you are aware, the President's budget for 2006 proposes to 
eliminate the National Farmworker Jobs Program. This action appears to 
be prompted by a reduction in the United States Department of Labor's 
Employment and Training budget; the conviction that farmworkers will 
receive similar services through the One-Stop Centers and the local 
One-Stop Systems; and the belief that the National Farmworker Jobs 
Program is ineffective and duplicates other programs.
    There are many issues that remain to be addressed and resolved 
first if the One-Stop Centers and the One-Stop Systems are to fulfill 
the mandate to serve migrant and seasonal farmworkers as part of their 
universe of clients. At the very least, state and local workforce 
boards will need to deal with issues of program performance and the 
manner for reaching farmworkers with services. Farmworkers live and 
work in the margins of small rural towns, where the One-Stop Systems 
have limited representation.
    As regards performance, local workforce boards and their service 
providers currently receive few, if any, incentives from the state 
workforce boards to serve farmworkers and other populations with 
special needs. Consequently, providers feel obliged to job place many 
clients in the shortest time possible, with little consideration of 
their need for remedial education and customized skills training, which 
farmworkers and other special population with special needs require. 
Under current conditions, local workforce boards and their providers 
see little or no benefit to enrolling individuals with extremely low 
education levels and high mobility rates, as is the case with migrant 
farmworkers. This is the current state of services to migrant and 
seasonal farmworkers via the One-Stop Centers and the One-Stop Delivery 
System in many states where farmworkers are a significant part of the 
overall workforce.
    As regards farmworkers' access to services, the degree and mix of 
employment, training and supportive services that farmworkers receive 
in their communities today is possible because of funding by the 
National Farmworker Jobs Program. The National Farmworker Jobs Program 
supports customized service strategies with bilingual and bicultural 
staff that serve as a bridge between the farmworker community and the 
services and those educational programs offered by community and faith-
based organizations and public institutions that are attuned to the 
needs of youth and adult learners. It is worth noting that the National 
Farmworker Jobs Program has high performance standards and outcome 
measures that are consistently met or exceeded. The outcomes for the 
Farmworker Jobs and Education Program, as Florida's National Farmworker 
Jobs Program is known, compares very favorably with national, state and 
local outcomes of other employment and training programs.
    In closing, I would like to share with the Subcommittee the story 
of one individual who benefited from Florida's Farmworker Jobs and 
Education Program and who was recently recognized by the Florida 
Department of Education as an ``All American Success''.
    Thank your for the opportunity to address this issue and ask that 
the Subcommittee consider farmworkers among those for whom continued 
federal support is essential.
                                 ______
                                 
               Prepared Statement of Gallaudet University

    Mr. Chairman and members of the Committee: I would like to express 
my appreciation to you and to Congress for the generous support that we 
received in fiscal year 2005 to continue maintaining and enhancing 
academic programs and salaries at Gallaudet University. I am especially 
grateful that Congress continues to support us during these challenging 
times. I would like to provide you with some details concerning our 
request for fiscal year 2006. In my testimony last year, I discussed 
ongoing efforts by Gallaudet to diversify our sources of revenue and 
support, and I also want to bring you up to date on this issue.
    It is important to note that the proportion of the Federal 
appropriation for Gallaudet University as a part of our total budget 
was 17 percentage points less in 2004 than it was in 1981. During the 
1980's and 1990's, we coped with limitations on Federal support by 
increasing our tuition charges at a rate that exceeded growth in the 
Consumer Price Index (CPI) during that period. However, in light of 
concerns expressed by members of Congress and others, we have limited 
the increase in tuition charges for fiscal year 2006 to 3 percent, 
commensurate with general inflation. Very significantly, we have also 
reduced staffing since 1989 by 20 percent. In addition, we have changed 
our strategy for funding major construction and renovation projects. 
When I became President in 1988, every building on the Kendall Green 
campus had been constructed with 100 percent Federal funding. Since I 
became President, every major construction or renovation project we 
have conducted has been supported either by cost-sharing with the 
Federal government or by private fundraising alone. For example, the 
buildings constructed here most recently, the Kellogg Conference Hotel 
at Gallaudet University and the Student Academic Center, were 
constructed without any additional Federal appropriations. In 2003, we 
completed a 4-year, $40 million capital campaign, and much of that 
funding went to support construction of the Student Academic Center and 
growth in our endowment. We have begun fundraising for a much-needed 
new facility to house our language and communication programs, and I am 
pleased to inform you that in November of last year we received a $5 
million gift for this project from the Sorenson family of Utah. I 
believe, therefore, that we have been very responsible in our requests 
for Federal support and that we have done everything we could to seek 
additional sources of funding during a period when Congress has faced 
funding limitations.
    Because of Congress' ongoing support of Gallaudet in fiscal year 
2005, we have been able to maintain a competitive pay structure for our 
employees while retaining the flexibility to meet the needs of a 
changing student body. Given the unique student population we serve and 
the communication skills our employees are expected to possess, 
retaining skilled employees is very critical to our mission. Gallaudet 
employees received general pay increases of 2 percent in fiscal year 
2003, 3 percent in fiscal year 2004, and 2 percent in fiscal year 2005, 
increases that are below what Federal employees in the region received 
during the same timeframe, but in line with increases in the CPI. It 
will be important for Gallaudet to ensure that our employees receive a 
3 percent pay increase in fiscal year 2006, commensurate with current 
increases in inflation. We are also requesting support for inflationary 
increases in non-salary areas, especially in the cost of utilities, 
insurance, and other professional fees.
    The administration budget for fiscal year 2006 includes $104.557 
million for Gallaudet, the same as our current year fiscal year 2005 
appropriation. I have carefully analyzed our fiscal year 2006 funding 
needs and have determined that in order to award a 3 percent salary 
increase to our faculty and staff, and to meet other inflation-driven 
increases, we need an increase of only $3.1 million, 3 percent above 
our current appropriation.
    While this minimal increase would allow us to continue with current 
programs, it would not allow us to invest in programs that the 
University considers of critical importance. Our three priorities for 
fiscal year 2006 include the following:
Initiatives to increase accessibility to information from outside and 
        from within the university campus--$975,000

    Information technology continues to be the ``great equalizer'' that 
levels the playing field for those who are deaf or hard of hearing. 
Ever-increasing access to visual media and the growing proliferation of 
text-based communication provides more opportunities for deaf and hard 
of hearing people in different aspects of society. Therefore, it is 
essential that Gallaudet continue to invest in information technology 
that will provide these kinds of opportunities for our students.
    This funding will support the replacement of computers used daily 
by students in the digital learning center at the Student Academic 
Center, in student services programs, and in classrooms. It will also 
support upgrades to the University's Web presence and to student e-
portfolio systems, which allow students to document their academic 
progress, receive feedback from their instructors, and present 
themselves electronically to potential employers.
    Finally, Gallaudet owns the largest and most unique collection of 
deafness-related materials in the world. Support will be given to the 
digitization of Gallaudet's unique archives. Digitizing these archives 
will make them more accessible to scholars and students at the 
University, as well as scholars from outside the Gallaudet community.
Initiatives to enhance University programs for deaf students from non-
        traditional and diverse backgrounds--$300,000

    Gallaudet continues to seek ways to reach out to and create a more 
positive educational climate for deaf students from non-traditional and 
diverse backgrounds. Demographic trends point to a growing number of 
students of color as well as a growing number of deaf students who are 
placed in educational settings where sign language is not the primary 
mode of communication.
    Gallaudet recognizes that teacher preparation is essential in 
supporting students of color. In order for the teachers to capitalize 
on the expertise that Gallaudet has to offer, we seek to offer a 
regional distance education degree program that will allow teachers to 
receive training and earn a degree from Gallaudet without their having 
to come to Washington, D.C. to earn all their credits.
    In public education today, more deaf students are placed in 
educational settings where sign language is not the primary mode of 
communication. We believe it is important to have sufficient support 
for students with such backgrounds who come to Gallaudet to help them 
make the transition to a direct communication environment. It is also 
important for those who are undecided about which college to attend to 
understand that there is a strong program in place to help with such 
transition. The additional funding will let Gallaudet study optimal 
ways to enhance real-time captioning. In addition, it will support 
upgrading of the New Signers Program that provides sign language 
instruction to new students with weak or no signing skills.
Improvements to the Theatre Arts Department, including renovations of 
        the Elstad Auditorium and Annex--$950,000
    Funding will enhance student learning by improving and expanding 
the Theatre Arts program at Gallaudet and by updating and expanding the 
Elstad Auditorium and Annex. As an institution that promotes the visual 
arts, we must provide a solid theatre arts experience to our students. 
Further, as the world's only university in which all programs and 
services are specifically designed to accommodate deaf and hard of 
hearing students, Gallaudet needs a first rate arena to promote direct 
access for a broad audience.
    Changes in technology in the last thirty years have been very 
significant, and we are falling behind in our technical theatre. 
Lighting and sound systems are outdated, as are computer programming, 
costume shop equipment, and the set workshop. The building is not wired 
for classrooms to have direct access to the information network, and 
the box office is not wired to enable the use of effective and 
efficient ticketing programs.
    Access to theatre for deaf and hard of hearing people is often 
limited to one or two interpreted performances in area productions. The 
improvements to the Gallaudet University Theatre Arts program and 
facilities would enable direct access by a broader audience, as well as 
allow for opportunities for us to partner with other theatre companies, 
such as the nationally acclaimed Arena Stage, to produce unique visual 
performances. Students would experience ``smart'' classrooms and learn 
how to use state-of-the-art theatrical technology. In addition, the 
deaf and hard-of-hearing community would have direct access to many 
theatrical performances. Finally, hearing audiences would be attracted 
to and exposed to deaf theatre.
Total Program Requests--$2,225,000
    The total request for Gallaudet University, including these three 
critical program priorities is $109.9 million, representing a 5 percent 
increase from our fiscal year 2005 appropriation. This increase would 
have a significantly positive impact on the University's ability to 
meet the increasing and changing needs of our students and those in the 
field of deaf education.
    I appreciate the challenges that Congress faces in making 
appropriations decisions for fiscal year 2006, but experience has shown 
that Gallaudet provides an outstanding return on the Federal dollars 
that are invested here in terms of the educated and productive deaf 
community that the nation enjoys as a result.
                                 ______
                                 
     Prepared Statement of the Medical Library Association and the 
           Association of Academic Health Sciences Libraries

            SUMMARY OF RECOMMENDATIONS FOR FISCAL YEAR 2006

    (1) A 6 percent increase for the National Library of Medicine at 
the National Institutes of Health and support for NLM'S urgent facility 
construction needs.
    (2) Continued support for the Medical Library community's role in 
NLM'S outreach, telemedicine and health information technology 
initiatives.
    Mr. Chairman, thank you for the opportunity to testify today on 
behalf of the Medical Library Association (MLA) and the Association of 
Academic Health Sciences Libraries (AAHSL) regarding the fiscal year 
2006 budget for the National Library of Medicine. I am Logan Ludwig, 
Associate Dean for Library and Telehealth Services at Loyola University 
Strich School of Medicine in Maywood, Illinois.
    Established in 1898, MLA is a nonprofit, educational organization 
of more than 1,100 institutions and 3,600 individual members in the 
health sciences information field, committed to educating health 
information professionals, supporting health information research, 
promoting access to the world's health sciences information, and 
working to ensure that the best health information is available to all.
    AAHSL is comprised of the directors of libraries of 142 accredited 
United States. and Canadian medical schools belonging to the 
Association of American Medical Colleges. Together, MLA and AAHSL 
address health information issues and legislative matters of importance 
to the medical community through a joint task force.
    Mr. Chairman, the National Library of Medicine, on the campus of 
the National Institutes of Health in Bethesda, Maryland, is the world's 
largest medical library. The Library collects materials in all areas of 
biomedicine and health care, as well as works on biomedical aspects of 
technology, the humanities, and the physical, life, and social 
sciences. The collections stand at 5.8 million items--books, journals, 
technical reports, manuscripts, microfilms, photographs and images. 
Housed within the library is one of the world's finest medical history 
collections of old and rare medical works. The Library's collection may 
be accessed in the reading room or requested on interlibrary loan. NLM 
is a national resource for all U.S. health science libraries through a 
National Network of Libraries of Medicine. Increasingly, it is becoming 
an international resource for world-wide research collaboration.
    With respect to the Library's budget for the coming fiscal year, I 
would like to touch briefly on four issues: (1) the growing demand for 
NLM's basic services; (2) NLM's outreach and education services; (3) 
NLM's telemedicine and informatics activities; and (4) NLM's facility 
needs.

              THE GROWING DEMAND FOR NLM'S BASIC SERVICES

    Mr. Chairman, it is a tribute to NLM that the demand for its 
services continues to steadily increase each year. An average of 500 
million Internet searches are performed annually on NLM's MEDLINE 
database, which provides access to the world's most up-to-date health 
care information. MEDLINEplus, NLM's extensive electronic information 
resource for the general public, is viewed approximately 200 million 
times a year. This activity dwarfs previous usage of NLM's 
bibliographic services, whether electronic or print. Moreover, 
researchers, scholars, librarians, physicians, healthcare providers 
from around the world, and the general public rely heavily on NLM and 
its National Network of Libraries of Medicine to deliver health care 
information everyday that is necessary to improve the quality of our 
nation's healthcare system.
    NLM also plays a critical role in maintaining the integrity of the 
world's largest collection of medical books and journals. Increasingly, 
this current and historical information is in digital form. This has 
fundamentally changed how the library operates--how and what it 
collects, how it preserves information, and how it disseminates 
biomedical knowledge. NLM, as a national library responsible for 
preserving the scholarly record of biomedicine, is developing a 
strategy for selecting, organizing, and ensuring permanent access to 
digital information. Regardless of the format in which the materials 
are received, ensuring their availability for future generations 
remains the highest priority of the Library.
    Mr. Chairman, simply stated, NLM is a national treasure. I can tell 
you that without NLM our nation's medical libraries would be unable to 
provide the quality information services that our nation's healthcare 
providers, educators, researchers and patients have come to expect.
    Recognizing the invaluable role that NLM plays in our health care 
delivery system, the Medical Library Association and the Association of 
Academic Health Sciences Libraries join with the Ad Hoc Group for 
Medical Research Funding in recommending a 6 percent increase for NLM 
and NIH overall in fiscal year 2006.

                         OUTREACH AND EDUCATION

    NLM's outreach programs are of particular interest to both MLA and 
AAHSL. These activities, designed to educate medical librarians, health 
care professionals and the general public about NLM's services, are an 
essential part of the Library's mission.
    The Library has taken a leadership role in promoting educational 
outreach aimed at public libraries, secondary schools, senior centers 
and other consumer-based settings. NLM's emphasis on outreach to 
underserved populations assists the effort to reduce health disparities 
among large sections of the American public. We were pleased that the 
Committee again last year recognized the need for NLM to coordinate its 
outreach activities with the medical library community.

PubMed Central
    The medical library community also applauds NLM for its leadership 
in establishing PubMed Central, an online repository for life science 
articles. Introduced in 2000, PubMed Central was created by NLM's 
National Center for Biotechnology Information and evolved from an 
electronic publishing concept proposed by former NIH Director Dr. 
Harold Varmus. The site houses articles from some 100 journals 
including the Proceedings of the National Academy of Sciences and 
Molecular Biology of the Cell.
    The medical library community believes that health sciences 
librarians should continue to play a key role in further development of 
PubMed Central and we are pleased that medical librarians are members 
of the NLM PubMed Central Advisory Committee. Because of the high level 
of expertise health information specialists have in the organization, 
collection and dissemination of medical literature, we believe our 
community can assist NLM with issues related to copyright, fair use, 
and information classification on the PubMed Central site. We look 
forward to continuing our collaboration with the Library as this 
exciting project continues to evolve this year.

MEDLINEplus
    NLM estimates that the public conducts 30 percent of all MEDLINE 
searching. MEDLINEplus [http://www.nlm.nih.gov/medlineplus/], a source 
of authoritative, full-text health information resources from the NIH 
institutes and a variety of non-Federal sources, has grown tremendously 
in its coverage of health and its usage by the public. In January 2003, 
two million unique users searched more than 600 ``health topics'' that 
contain detailed consumer-focused information on various diseases and 
health conditions. Recent additions to MEDLINEplus include illustrated 
interactive patient tutorials, a daily news feed from the public media 
on health-related topics, and the NIHSeniorHealth site [http://
nihseniorhealth.gov/], a collaborative project between NLM and the 
National Institute on Aging.

Clinical Trials
    Mr. Chairman, I also want to comment on another relatively new 
service offered by NLM--its clinical trials database [http://
www.clinicaltrials.gov]. This listing of more than 7,000 federal and 
privately funded trials for serious or life-threatening diseases was 
launched in February of 2000 and currently logs more than 2 million 
page hits per month. The clinical trials database is a free and 
invaluable resource to patients and families interested in 
participating in cutting edge treatments for serious illnesses. The 
medical library community congratulates NLM for its leadership in 
creating ClinicalTrials.gov and looks forward to assisting the Library 
in advancing this important initiative.
    Mr. Chairman, we applaud the success of NLM's outreach initiatives 
and look forward to continuing our work with the Library again in 
fiscal year 2006 on these important programs.

                  TELEMEDICINE AND MEDICAL INFORMATICS

    Mr. Chairman, telemedicine continues to hold great promise for 
dramatically increasing the delivery of health care to underserved 
communities across the country and throughout the world. NLM has 
sponsored over 50 innovative telemedicine related projects in recent 
years, including 21 multi-year projects in various rural and urban 
medically underserved communities. These sites serve as models for:
  --Evaluating the impact of telemedicine on cost, quality, and access 
        to health care;
  --Assessing various approaches to ensuring the confidentiality of 
        health data transmitted via electronic networks; and
  --Testing emerging health data standards.
    It is clear that telemedicine and medical informatics program such 
as the Visible Human Project [http://www.nlm.nih.gov/research/visible/
visible_human.html]--male and female data sets consisting of MRI, CT, 
and photographic cryosection images totaling 50 gigabytes and licenses 
to scientists at more than 1,700 institutions around the world--will 
play a major role in the delivery of health care and research in the 
21st Century.
    We are pleased that NLM has begun a new program to support 
informatics research that addresses information management problems 
relevant to disaster management. Medical librarians and health 
information specialists have an important role to play in supporting 
these cutting edge technologies, and we encourage Congress and NLM to 
continue their strong support of telemedicine and other medical 
informatics initiatives.

                          NLM'S FACILITY NEEDS

    Mr. Chairman, over the past two decades NLM has assumed several new 
responsibilities, particularly in the areas of biotechnology, health 
services research, high performance computing, and consumer health. As 
a result, the Library has had tremendous growth in its basic functions 
related to the acquisition, organization, and preservation of an ever-
expanding collection of biomedical literature.
    This increase in the volume of biomedical information as well as 
expansion of personnel (NLM currently houses over 1,100 people in a 
facility built to accommodate 650) has resulted in a serious shortage 
of space at the Library. In addition, NLM's National Center for 
Biotechnology Information [http://www.ncbi.nlm.nih.gov] builds 
sophisticated data management tools for processing and analyzing 
enormous amounts of genetic information critical to advancing the Human 
Genome Project.
    In order for NLM to continue its mission as the world's premier 
biomedical library, a new facility is urgently needed. The NLM Board of 
Regents has assigned the highest priority to supporting the acquisition 
of a new facility. The medical library community is pleased that 
Congress appropriated the necessary architectural and engineering funds 
for facility expansion at NLM in 2003.
    We encourage the subcommittee to continue to provide the resources 
necessary to acquire a new facility and to support the Library's health 
information programs.
    Mr. Chairman, thank you again for the opportunity to present the 
views of the medical library community.
                                 ______
                                 
 Prepared Statement of the National Association of Children's Hospitals
                                overview

    The National Association of Children's Hospitals (N.A.C.H.) is 
pleased to have the opportunity to submit the following statement for 
the hearing record in support of the Children's Hospitals' Graduate 
Medical Education (CHGME) Payment Program in the Health Resources and 
Services Administration (HRSA).
    On behalf of the nation's 60 independent children's teaching 
hospitals, N.A.C.H. very much appreciates the Subcommittee's early and 
continuing commitment over several years to provide full, equitable GME 
funding for these hospitals, giving them a level of federal support for 
their teaching programs that seeks to be comparable to what all other 
teaching hospitals receive through Medicare.
    We also appreciate the Subcommittee's support for level funding of 
$303 million for fiscal year 2005--the amount requested by President 
Bush and recommended by N.A.C.H. Ultimately, this funding was reduced 
to $301 million, or less than level funding, by a 0.8 percent across 
the board reduction in non-defense, non-homeland security discretionary 
spending programs in the final conference report.
    For fiscal year 2006, we respectfully request an adjustment 
recognizing the cost of inflation for CHGME, which would result in 
total funding of $309 million, so that these institutions will have the 
resources necessary to train and educate the nation's pediatric 
workforce. Such an adjustment is important for a program with both 
wage-related and medical teaching costs associated with it. Given the 
challenges that the Subcommittee faces, we hope that at a minimum the 
program can at least be maintained at level funding and not lose 
further ground in fiscal year 2006.
    N.A.C.H. is a not-for-profit trade association, representing more 
than 125 children's hospitals across the country. Its members include 
independent acute care children's hospitals, acute care children's 
hospitals organized within larger medical centers, and independent 
children's specialty and rehabilitation hospitals. N.A.C.H. seeks to 
serve its member hospitals' ability to fulfill their four-fold missions 
of clinical care, education, research and advocacy devoted to the 
health and well being of all children in their communities.
    Children's hospitals are regional and national centers of 
excellence for children with serious and complex conditions. They are 
centers of biomedical and health services research for children, and 
they serve as the major training centers for future pediatric 
researchers, as well as a significant number of our children's doctors. 
These institutions are major safety net providers, serving a 
disproportionate share of children from low-income families, and they 
are also advocates for the public health of all children.
    Although they represent less than 5 percent of all hospitals in the 
country, the three major types of children's hospitals provide 41 
percent of the inpatient care for all children, 42 percent of the 
inpatient care for children assisted by Medicaid, and the vast majority 
of hospital care for children with serious conditions such as cancer or 
heart defects.

           BACKGROUND: THE NEED FOR CHILDREN'S HOSPITALS GME

    While they account for less than 1 percent of all hospitals, the 
independent children's teaching hospitals alone train nearly 30 percent 
of all pediatricians, half of all pediatric specialists and a majority 
of future pediatric researchers. They also provide required pediatric 
rotations for many other residents. They train about 4,000 residents 
annually, and the need for these training programs is even more 
heightened by the growing evidence of shortages in pediatric 
specialists around the country.
    Prior to initial funding of the CHGME program for fiscal year 2000, 
these hospitals were facing enormous challenges to their ability to 
maintain their training programs. The increasingly price competitive 
medical marketplace was resulting in more and more payers failing to 
cover the costs of care, including the costs associated with teaching.
    The independent children's hospitals were essentially left out of 
what had become the one major source of GME financing for other 
teaching hospitals, Medicare, because they see few if any Medicare 
patients. They received only 1/200th (or less than 0.5 percent) of the 
federal GME support that all other teaching hospitals received under 
Medicare.
    This lack of GME financing, combined with the financial challenges 
stemming from their other missions, was threatening their teaching 
programs, as well as other important services.
    Integral Safety Net Institutions.--In addition to their teaching 
missions, the independent children's hospitals are a significant part 
of the health care safety net for low-income children. In fiscal year 
2003, children assisted by Medicaid represented, on average, 47 percent 
of all discharges from free-standing acute care children's hospitals 
and accounted for about 50 percent of all inpatient days of care. Yet 
Medicaid, on average, reimbursed 80 percent of the cost of care 
provided. Without disproportionate share hospital payments, those 
reimbursements would only cover, on average, 73 percent of the cost of 
care. The shortfalls in Medicaid payments for outpatient and physician 
care are even greater. . The independent children's hospitals also are 
essential providers of care for seriously and chronically ill children. 
They devote more than 75 percent of their care to children with one or 
more chronic or congenital conditions. They provide the vast majority 
of inpatient care to children with many serious illnesses--from 
children with cancer or cerebral palsy, for example, to children 
needing heart surgery or organ transplants. In some regions, they are 
the only source of pediatric specialty care. The severity and 
complexity of illness and the services and resources that these 
institutions must maintain to assure access to this quality care for 
all children are also often inadequately reimbursed.
    Mounting Financial Pressures.--The CHGME program, and its 
relatively quick progress to full funding in fiscal year 2002, came at 
a critical time. In 1997, when Congress first considered establishing 
CHGME, a growing number of independent children's teaching hospitals 
had financial losses, and many more faced mounting financial pressures. 
More than 10 percent had negative total margins, more than 20 percent 
had negative operating margins, and nearly 60 percent had negative 
patient care margins. Some of the nation's most prominent children's 
hospitals were at financial risk. Thanks to the CHGME program, these 
hospitals have been able to maintain and strengthen their training 
programs.
    Continuing this critical CHGME funding is more important for these 
hospitals than ever in light of state budget shortfalls in many states 
and the resulting pressures for significant reductions in state 
Medicaid spending. Because children's hospitals devote such a 
substantial portion of their care to children from low-income families, 
they are especially affected by cutbacks in state Medicaid programs.
    Pediatric Workforce Development.--The important role the CHGME 
program plays in the continual development of our nation's pediatric 
workforce is not lost on the larger pediatric community, including the 
American Academy of Pediatrics and Association of Medical School 
Pediatric Department Chairs The pediatric community supports this 
program and recognizes that CHGME is critical not only to the future of 
the individual hospitals, but also to provision of children's health 
care and advancements in pediatric medicine overall.
    Lastly, many of the independent children's hospitals are a vital 
part of the emergency and critical care services in their communities 
and regions. They are part of the emergency response system that must 
be in place for public health emergencies. Expenses associated with 
preparedness add to their continuing costs in meeting children's needs.

                         CONGRESSIONAL RESPONSE

    In the absence of any movement toward broader GME financing reform, 
Congress in 1999 authorized the Children's Hospitals' GME discretionary 
grant program to address the existing inequity in GME financing for the 
independent children's hospitals. The legislation was reauthorized in 
2000 through fiscal year 2005 and provided $285 million through fiscal 
year 2001 and such sums as may be necessary in the years beyond.\1\ 
Congress passed the initial authorization as part of the ``Healthcare 
Research and Quality Act of 1999'' and the reauthorization as part of 
the ``Children's Health Act of 2000.''
---------------------------------------------------------------------------
    \1\ The Lewin Group, an independent health policy analysis firm 
calculated in 1998 that independent children's teaching hospitals 
should receive approximately $285 million in federal GME support for 
nearly 60 institutions to achieve parity with the financial 
compensation provided through Medicare for GME support to other 
teaching hospitals.
---------------------------------------------------------------------------
    With the support of this Subcommittee, Congress appropriated 
initial funding for the program in fiscal year 2000, before the 
enactment of its authorization. Following enactment, Congress moved 
substantially toward full funding for the program in fiscal year 2001 
and completed that goal, providing $285 million in fiscal year 2002, 
$290 million in fiscal year 2003, $303 million in fiscal year 2004 and 
$301 million in fiscal year 2005. (In the last 2 fiscal years, the 
funding levels are net of across-the-board reductions in all non-
defense, non-homeland security discretionary appropriations.) The 
annual CHGME appropriations represent an extraordinary achievement for 
the future of children's health care as well as for the nation's 
independent children's teaching hospitals.
    Health Resources and Services Administration.--The CHGME funding 
appropriated by Congress is distributed through HRSA to 60 children's 
hospitals according to a formula based on the number and type of full-
time equivalent (FTE) residents trained, in accordance with Medicare 
rules, as well as the complexity of care and intensity of teaching the 
hospitals provide. Consistent with the authorizing legislation, HRSA 
allocates the annual appropriation in bi-weekly periodic payments to 
eligible independent children's hospitals.
    ``Adequate'' Rating From Administration.--The Office of Management 
and Budget gave CHGME an ``adequate'' rating in 2003, using its Program 
Assessment Rating Tool (PART). The PART review said CHGME has a ``clear 
purpose,'' is ``effectively targeted,'' has specific ``long-term 
performance measures'' that focus on outcomes, and holds grantees 
``accountable for cost, schedule, and performance results.''

                        FISCAL YEAR 2006 REQUEST

    N.A.C.H. respectfully requests that the Subcommittee continue 
equitable GME funding for the independent children's hospitals by 
providing $309 million for the program in fiscal year 2006, which would 
provide an adjustment for inflation over current funding. We, of 
course, hope that such an adjustment could be provided, since it is 
particularly important for a program that includes both wage-related 
and medical teaching costs. Given the challenges that the Subcommittee 
faces, we hope that the program at least can be maintained at level 
funding and not lose further ground in fiscal year 2006.
    Adequate, equitable funding for CHGME is an ongoing need. 
Children's hospitals continue to train new pediatric residents and 
researchers every year. Children's hospitals have appreciated very much 
the congressional support they have received, including the attainment 
of the program's authorized full funding level in fiscal year 2002 and 
continuation of full funding with an inflation adjustment in fiscal 
year 2003 and fiscal year 2004. Now, N.A.C.H. asks Congress to maintain 
this progress by providing $309 million in fiscal year 2006.
    Support for a strong investment in GME at independent children's 
teaching hospitals is consistent with the repeated concern the 
Subcommittee has expressed for the health and well-being of our 
nation's children--through education, health and social welfare 
programs. It also is consistent with the Subcommittee's repeated 
emphasis on the importance of enhanced investment in the National 
Institutes of Health (NIH) overall, and in NIH support for pediatric 
research in particular, for which we are very grateful.
    The CHGME funding has been essential to the ability of the 
independent children's hospitals to sustain their GME programs. At the 
same time, it has enabled them to do so without sacrificing support for 
other critically important services that also rely on hospital subsidy, 
such as many specialty and critical care services, child abuse 
prevention and treatment services, poison control centers, services to 
low-income children with inadequate or no coverage, mental health and 
dental services, and community advocacy, such as immunization and motor 
vehicle safety campaigns.
    In conclusion, the Children's Hospitals GME Payment Program is an 
invaluable investment in children's health. The future of the pediatric 
workforce and children's access to quality pediatric care, including 
specialty and critical care services, could not be assured without it. 
Again, N.A.C.H. and the nation's independent children's teaching 
hospitals are deeply grateful to the Chairman and the Subcommittee for 
your continuing leadership on behalf of the teaching missions of 
children's hospitals.
    For further information, please contact Peters D. Willson, vice 
president for public policy, N.A.C.H., at 703/797-6006 or 
[email protected].
                                 ______
                                 
          Prepared Statement of the National AHEC Organization

              SUMMARY OF FISCAL YEAR 2006 RECOMMENDATIONS

    1. Increase funding for the health professions and nursing 
education programs under Title VII and Title VIII of the Public Health 
Service Act to at least $550 million for fiscal year 2006.
    2. Restore funding for Area Health Education Centers (AHECs) to 
fiscal year 2003 level of $33.1 million.
    3. Restore funding for Health Education Training Centers (HETCs) to 
fiscal year 2003 level of $4.3 million.
    Mr. Chairman, and members of the subcommittee, I am pleased to 
present testimony on behalf of the National AHEC Organization.
    I am Linda Kanzleiter, and I work for the Pennsylvania Statewide 
AHEC Program and am a member of the National AHEC Organization (NAO). 
NAO is the professional organization representing the Area Health 
Education Centers (AHECs) and Health Education Training Centers 
(HETCs). Together, we seek to enhance access to quality health care, 
particularly primary care and preventative care, by improving the 
supply and distribution of health care professionals through 
community--academic partnerships

                     PERSISTENT WORKFORCE SHORTAGES

    Mr. Chairman, contrary to what may be commonly understood, 
persistent and severe shortages exist in a number of health 
professions. Chronic shortages exist for all health professions in many 
of our nation's underserved communities, and substantial shortages 
exist in all communities for some professions such as nursing, 
pharmacy, and certain allied health fields. While the supply of 
physicians in the non-primary care specialties may well be adequate, 
supply and distribution problems for primary care physicians, nurses, 
and many allied health professionals are undermining access and quality 
in many of our nation's communities.
    Historically, the supply of and demand for health care 
professionals has waxed and waned in a manner that produced cycles of 
shortage and excess. However, it is reasonable to believe that the 
current shortages are of a different and more persistent nature. First, 
the breadth and depth of shortages are greater than at any time in the 
past. More disciplines are in short supply, more sites of care 
(hospitals, nursing homes, home care agencies, and clinics) are 
experiencing shortages, and the duration of vacancies is longer. 
Second, the demand for health care services is steadily and inexorably 
increasing due to the aging population and the advances in medical 
technology. Third, the health care provider population is aging itself. 
Fourth, the resources with which the health care industry might respond 
to shortages are inadequate to the challenges. Due to the squeeze of 
managed care, provider institutions are unable to increase salaries, 
and due to cuts in government funding, educational institutions are 
unable to expand class sizes. Finally, the career opportunities 
available to women, who dominate the health care professions, have 
expanded greatly.
    Health care workforce shortages are occurring in a context of an 
increasingly aged population with greater needs for health care 
services. In addition, health technology steadily produces advances 
that require a higher level of training and sophistication on the part 
of health care providers. These trends are occurring at time when the 
number and the level of academic preparedness of students entering the 
health professions are decreasing.
    In addition, minority and disadvantaged populations are egregiously 
under represented in the health professions. Given the demographic 
trends in the United States, minority populations constitute a major 
untapped source of future health care professionals.

                           THE ROLE OF AHECS

    Mr. Chairman, the AHEC/HETC network is the federal government's 
most flexible and efficient mechanism for addressing a wide and 
evolving variety of health care issues on a local level. Through AHECs 
and HETCs, national initiatives can be targeted to the areas of 
greatest need and molded to the particular issues confronting 
individual communities. Whether the issue is the nursing shortage, 
bioterrorism preparedness, access for the uninsured, or recruiting 
under-represented minority students into the health professions, AHECs 
and HETCs, where they exist, can assemble the appropriate local 
collaboration and apply federal, state, and local resources in a 
precise and cost-effective manner.
    Since our inception almost thirty years ago, AHECs have partnered 
with local, state, and federal initiatives and educational institutions 
in providing clinical training opportunities to health professions and 
nursing students in rural and underserved communities. We bring the 
resources of academic health centers to bear in addressing the health 
care needs of these communities. Currently, there are 48 AHEC programs 
and 180 centers located in 43 states and the District of Columbia. AHEC 
programs are based at schools of medicine, which are the federal AHEC 
grant recipients, and are implemented through the regional offices 
(centers), each of which serves a defined geographic area.

              AHEC PROGRAMS PERFORM FOUR BASIC FUNCTIONS:

    1. They develop and support the community based training of health 
professions students, particularly in underserved rural and urban 
areas. Exposing health professions students to underserved communities 
increases the likelihood that they will return to these communities to 
practice.
    When considering access, Pennsylvania faces some unique challenges. 
For example, The Pennsylvania Department of Health estimates that about 
1,259,441 people in our Commonwealth do not have health insurance of 
any kind. Of that number, 109,883 are persons within the five counties 
we serve. The National Association of Community Health Centers 
estimates that, in Pennsylvania, at least 1,479,087 people are 
``without a primary care provider''. This figure represents more than 
12 percent of Pennsylvania's total population (12,281,054). This number 
is likely higher because eight counties, including Carbon & Lehigh, 
were not included in their data.
    Pennsylvania AHECs have developed a network of over 972 health care 
training sites, 3,632 students and residents, and 1,045 on-site 
preceptors providing service to patients at these training centers.
    2. They provide continuing education and other services that 
improve the quality of community-based health care. Improving the 
quality of care also enhances the retention of providers in underserved 
communities, particularly community health centers.
    A crucial part of our mission in Pennsylvania involves linking 
fourth year medical students with Medical Preceptors, mentors and 
teachers in the community. Our goal is to help facilitate the process 
that allows the students to become familiar with the issues encountered 
in rural communities. The student can also begin to establish 
relationships, which will prove beneficial should they decide to 
practice in a rural area. In this way, Pennsylvania AHECs support the 
viability and, often, the continued, independent existence of small 
community hospitals.
    The Northeast Pennsylvania Area Health Education Center surveyed 
physicians in the rural counties it serves to clarify issues 
surrounding continuing education. The overwhelming response was that 
there was a desire for more information about bioterrorism, and that it 
should be accessible online. The Pennsylvania Department of Health 
subsequently created the Learning Management System (LMS), a web-based 
system for education and information-sharing regarding bioterrorism and 
other public health issues. The LMS delivers emergency preparedness 
training and access to up to date information to the hands of health 
professionals, day or night. The LMS serves as an information library, 
a forum for discussion groups, and means of surveying program content 
online.
    3. They recruit under-represented minority students into the health 
professions through a variety of programs targeted at elementary 
through high schools. Minority students are grossly under-represented 
in the health professions and are more likely to practice in 
underserved communities.
    The Northwest Pennsylvania AHEC has developed a program called the 
Great Hospital Adventure Puppet Presentation. The multi-media 
presentation includes a live puppet show, video movie, coloring book, 
classroom poster, and an interactive question and answer session. This 
program promotes health career awareness and encourages healthy 
behaviors for children aged four to nine. The classroom materials and 
activities emphasize non-traditional gender roles and multi-cultural 
images. The goal of the presentation is to attract children of all 
genders, backgrounds and cultures to health professions.
    The Northeast Pennsylvania AHEC established a summer camp called 
``Exploring Careers in Health'' for high school students who 
demonstrate a strong interest in medicine or health care. The camp is a 
weeklong program held on the campus of Keystone College. Students must 
apply for admission, and the camp provides an in-depth look at the 
health care field by participation in workshops with health 
professionals, hands-on activities, and field trips. Students are 
encouraged to explore numerous career choices as health professionals.
    Additionally, the Northeast Pennsylvania sponsors a program for 
area teachers and guidance counselors called ``Seeds for Success.'' The 
program offers an overview of health career opportunities at colleges, 
universities and post-secondary institutions in the surrounding area. 
The response to the program was overwhelmingly positive.
    4. They facilitate and support practitioners, facilities, and 
community based organizations in addressing critical local health 
issues in a timely and efficient manner.
    Only 13 percent of primary care physicians in Pennsylvania serve in 
rural communities. However, 42 of the state's 67 counties are 
predominantly rural and 7 counties are completely rural. These 
startling facts are the driving force behind the health care 
professions workforce development resolution.

                           THE ROLE OF HETCS

    The HETC programs were created to address the public health needs 
of severely underserved populations in border and non-border areas. 
Currently, HETC programs exist in 12 states and are supported by a 
combination of federal, state, and local funding, the majority of which 
comes from non-federal sources.
    Because the majority of preventable health problems are due to 
health behaviors and the environment, HETCs focus on community health 
education and health provider training programs in areas with severely 
underserved populations. HETCs target minority groups, disadvantaged 
communities, and communities with diverse culture and languages.

                         COLLABORATIVE EFFORTS

    Virtually all AHEC and HETC programs are collaborative in nature. 
They routinely partner with a wide variety of federal, state, and 
locally funded programs. Examples of these collaborations include 
health professions schools, primary care residency programs, community 
health centers, primary care associations, geriatric education centers, 
the National Health Service Corps, public health departments, health 
career opportunity programs, school districts, and foundations.
    Additionally, AHECs and HETCs often go beyond their core functions 
to undertake a wide variety of innovative programs, tailored to 
specific health issues affecting the communities they serve. Because 
health issues vary from community to community, the programs of each 
AHEC and HETC also vary considerably. AHECs and HETCs respond to 
changing health and health workforce needs in a flexible and timely 
manner. Examples of current issues for which we are directing our 
resources are:
    1. The nursing shortage.--Currently, AHECs and HETCs are working 
with schools of nursing, state nursing associations, and others to 
increase the number of qualified applicants to nursing schools, 
increase minority enrollment in nursing schools, expand the number of 
community-based nursing training sites, and re-train nurses who wish to 
re-enter the profession.
    The Northcentral Pennsylvania AHEC facilitated the Nursing Forum, 
titled Joining Healing Hands: Communication, Collaboration, and 
Teambuilding, to enhance regional nursing recruitment and retention 
efforts within their 10 county region on Friday, February 27, 2004 in 
Lewisburg, Union County. Participating nurses, nurse administrators, 
healthcare representatives, and nursing educators explored ways to 
strengthen communication, leadership skills, and teamwork to create a 
shared vision and commitment to quality healthcare. Skill sets 
encouraged at the forum promoted a shared commitment to quailty 
healthcare, fostered positive outcomes, encouraged inclusion of 
collaborative educational efforts, and supported the recruitment and 
retention of a diversified workforce.
    2. Bioterrorism education.--Currently, AHECs and HETCs are working 
with public health departments to educate health and public health 
professionals on surveillance, reporting, risk communication, 
treatment, and other responses to the threat of bioterrorism.
    3. The National Health Service Corps (NHSC).--AHECs and HETCs 
undertake a variety of programs related to the placement and support of 
NHSC scholars and loan repayment recipients.
    The Pennsylvania State University AHEC has actively supported the 
NHSC ``SEARCH'' program by interviewing prospective students, 
recommending community preceptors, and monitoring placements of 
students each summer in rural and underserved sites.
    4. Expansion of community health centers.--AHECs and HETCs are 
collaborating with health professions schools, primary care 
associations, and community health centers to increase the supply of 
providers willing and able to work in community health centers. In 
addition, AHECs/HETCs are working directly with CHC providers to 
improve the quality of care.

               JUSTIFICATION FOR FUNDING RECOMMENDATIONS

    Mr. Chairman, I respectfully ask the Subcommittee to support our 
recommendations to increase funding for the health professions and 
nursing education programs under Title VII and Title VIII of the Public 
Health Service Act to at least $550 million for fiscal year 2006. Our 
recommendations are consistent with those of the Health Professions and 
Nursing Education Coalition (HPNEC).
    The AHEC and HETC programs improve access to primary and 
preventative care through community partnerships, linking the resources 
of academic health centers with local communities. AHECs and HETCs have 
proven to be responsive and efficient models for addressing an ever-
changing variety of community health issues.
    However, AHECs and HETCs have not yet fully realized their 
potential to be a nationwide infrastructure for local training and 
information dissemination. In order to realize that potential 
additional federal investment is required. That is why we are 
requesting that in fiscal year 2006, you restore funding to fiscal year 
2003 levels of $33.4 million for AHECs and $4.3 million for HETCs.
                                 ______
                                 
   Prepared Statement of the State Educational Technology Directors 
                          Association (SETDA)

     NCLB TITLE II, PART D: ENHANCING EDUCATION THROUGH TECHNOLOGY

    On behalf of SETDA representing all fifty states, DC, and American 
Samoa, we encourage you to restore NCLB Title II, Part D--Enhancing 
Education through Technology (EETT) program to its fiscal year 2004 
funding level of $692 million. In fiscal year 2005, this program 
sustained a 28 percent cut, which has not yet been realized in schools 
across the country due to the grant award cycle. This testimony 
documents how states leverage EETT funding to ensure the ability of 
states, districts, and schools to implement all Titles within NCLB, 
specifically:
  --Enhancing data systems to ensure that educators can utilize real-
        time data to inform sound instructional decisions and ensure 
        that states are able to meet AYP.
  --Closing the achievement gap by providing access to software, online 
        resources, and virtual learning aligned to academic standards 
        for instruction and learning.
  --Supporting the development of highly qualified teachers by 
        providing online courses, communities of practice, and virtual 
        communication that ensure flexibility and access.
    The data and examples illustrate how forty-nine states and DC 
(representing 99 percent of federal education technology funding) 
utilize EETT funding. 81 percent of school districts in this country 
receive and use EETT funding. States maintain 5 percent for technical 
assistance and administration and disseminate the remaining 95 percent 
equally between two programs:
    1. The Formula Grant Program by which high need districts receive 
an allotment based upon poverty rates.
    2. The Competitive Grant Program through which states establish 
areas of focus for districts to compete for the grants. Each grantee 
must include at least one high need district.

                            THE MYTH OF EETT

    Some believe that EETT is utilized primarily to purchase computers 
or ``the boxes in the back of the classroom.'' The SETDA National 
Trends Report and examples provided demonstrate that this is not the 
case. The majority of this funding supports the purchase of curriculum, 
provides professional development to ensure teachers are highly 
qualified, and builds systems for assessment, data and accountability 
mechanisms. Some grantees may use small amounts of the funding to 
purchase hardware integral to the students' education, i.e. laptops 
that children in rural areas bring home to expand learning 
opportunities; however the overwhelming majority of the funding is 
utilized to support the successful implementation of NCLB that is 
highlighted below.
   meeting ayp and improving student achievement through data systems
Key Facts
    Data management and accountability requirements are steadily rising 
and states have a limited capacity for meeting these requirements. EETT 
funds are the only source of federal funding for most states to use in 
developing the data systems needed to report AYP results mandated 
through NCLB. These funds are being used toward data systems that 
impact both instructional and administrative aspects of education. On 
the instructional side, the National Trends Report cites many examples 
of EETT funds being used to train teachers in understanding how to use 
data effectively to individualize learning and to make real-time 
modifications to instruction in order to best meet the needs of every 
learner. The report also cites multiple examples of state and district-
wide data management systems that allow for increased accountability 
and reporting.
    While professional development and student achievement are still 
extremely important in EETT, the program has seen a tremendous increase 
in the number of states (78 percent) that are using these technology 
funds for three other key NCLB priorities--assessment, outreach to 
parents, and data-driven decision-making.

Examples
    The Philadelphia Instructional Management System (IMS) is part of 
the School District of Philadelphia's comprehensive reform effort that 
includes new resources, a standardized curriculum, after school 
programs, and professional development. IMS provides teachers and 
administrators with immediate data on student learning aligned to State 
and District standards. A benchmark assessment, given every five weeks, 
allows teachers to differentiate instruction, provide immediate 
remediation, and identify those students who need additional 
assistance. Teachers, coaches, and administrators have access to 
student performance data through an online system. This system also 
provides suggested resources and strategies teachers can use to meet 
unique student needs. In 2003, before these technology tools were 
provided to teachers, only 9 of the 40 initial participating schools 
had met AYP; and 15 were identified for Corrective Action. At the end 
of the 2004 school year, 25 schools met their AYP targets, and only 10 
remained in Corrective Action II.
    In Vermont, school districts are using EETT funds to develop local 
student data systems or to join the statewide Vermont Data Consortium 
which is working with the Department of Education to create a statewide 
Education Data Warehouse. These data efforts support teachers using 
data to inform instruction and facilitate reporting of AYP data.
    States are finding that as they make more and more data available, 
teachers need help in understanding and using this data to inform their 
teaching and to help individualize and improve student learning. A good 
example of this is in the Blackfoot School District in Idaho where EETT 
funds are used with particular attention to K-12 mathematics. Through 
this program, teachers use data to identify student needs and then use 
technology to meet these needs. They are also able to provide ongoing 
professional development for teachers that otherwise would have been 
impossible without the Title II D funds.
    Maryland is using EETT funds for curriculum management systems. If 
a child is not mastering certain standards, this provides them with 
lesson plans and remediation activities to help get them up to par.

                  HELPING TO CLOSE THE ACHIEVEMENT GAP

Key Facts
    The requirement for EETT funds to be targeted to high need 
districts ensures that students who are most at risk will benefit from 
additional opportunities. EETT funds are helping to close the 
achievement gap by providing students with access to software, web 
courses, and virtual learning opportunities that are aligned to state 
standards. This is particularly important in areas where teachers in 
certain disciplines are difficult to find, such as foreign language, 
Advanced Placement (AP), or higher level science and math courses. With 
access to online opportunities, students in rural or high need areas 
have opportunities similar to other students in the state.
    Many states have steered EETT funds to core-curricular areas, such 
as reading, math and science, by establishing content priorities in 
their competitive grant processes: 74 percent of states created funding 
priorities in reading or writing, while 38 percent focused on 
mathematics.

Examples
    The Missouri eMINTS program provides classrooms with advanced 
software, intense professional development and Internet access to 
support standards-based instruction. Three years of data from a quasi-
experimental evaluation of the eMINTS program showed a significant 
improvement in third and fourth grade achievement on the Missouri 
Assessment Program (MAP) test results for African Americans. The study 
also noted that the achievement gap was closed between those African 
American students who participated in the program and White students 
who did not. The success of the eMINTS program is now being replicated 
in the state of Utah.
    Researcher Dale Mann (ASBO, 2003) cited a direct correlation 
between pupil performance and technology in instruction through West 
Virginia's Basic Skills/Computer Education program. The study found 
that while per capita income had not changed between 1991 and 1998, the 
infusion of technology was the single factor that accounted for the 
state moving from 33rd among the states for student achievement to 
11th.
    In Virginia, EETT funds have been used to develop an online 
Advanced Placement school. This program provides benefits to Virginia's 
students who are most in need, primarily rural and urban students, who 
otherwise would not have access to AP teachers or courses. A similar 
West Virginia project provides foreign language opportunities using 
online technologies. Preliminary findings through a scientifically-
based research evaluation indicate that courses delivered online are as 
effective as courses delivered face to face--expanding the 
opportunities for closing the achievement gap between students in 
remote areas.
    In region 4 of New York City, EETT funds have allowed student 
access to Cyber English, Social Studies, Math and Science classes. High 
schools are no longer limited by time and space and learning has become 
a 24/7 activity. This model has improved school attendance, engaged 
previously uninterested students, allowed students from diverse 
neighborhoods to collaborate, and finally provided parents a vehicle 
for becoming involved in their teenager's education.
    In North Carolina, the cuts will result in a limitation on nine 
very successful Community Technology Learning Centers. These centers 
have offered after-school and weekend programs for needy students and 
their parents. Most of these centers will either close or drastically 
scale back their services without EETT funding.
    North Dakota has established a rural consortium to implement the 
``Unified Education Project (UEP), which focuses on creating 
individualized learning plans for each student based on his or her 
strengths and weaknesses. Using an electronic portfolio, the UEP helps 
teachers track needs and provide appropriate instruction and 
remediation, allows the students to view standards and expectations and 
assess their own work accordingly, and encourages parent communication. 
The UEP allows for individualized instruction to ensure that schools 
and districts can meet AYP.

         IMPROVING TEACHER TRAINING, RETENTION, AND RECRUITMENT

Key Facts
    EETT requires that at least 25 percent ($147,000,000) of all EETT 
funds be used for professional development purposes, although most 
states use considerably more. EETT funds help to increase the access by 
providing online options that give teachers anytime, anyplace access to 
quality professional development. This is critical to ensure that 
teachers have the opportunity to increase content knowledge, improve 
instruction, and become highly qualified teachers.
Examples
    Algebra I is often a predictor for success in high school and 
beyond. Louisiana implemented an on-line Algebra I course to provide 
additional opportunities for student achievement. Preliminary 
evaluations indicate that students in the on-line course, with similar 
pre-test scores are showing more significant achievement gains compared 
to the control group as indicated below:

------------------------------------------------------------------------
                                                              Post-test
                     Group                        Pre-test     (spring)
                                                (fall) mean      mean
------------------------------------------------------------------------
Algebra I Online Students.....................         13.3         17.2
Control Students..............................         13.4         15.6
------------------------------------------------------------------------

    In Nevada, a middle school science partnership is beginning to show 
evidence of closing the achievement gap in participating schools. The 
partnerships between the University of Nevada, Reno and five rural 
Nevada school districts provides professional development to teachers 
to make them better able to assess their students and use technology to 
increase student achievement in math. The ability of these teachers to 
have access to the rigorous university research and the professional 
development to effectively bring about increases in student achievement 
in science.
    The North Carolina IMPACT Model Schools Grant provides personnel, 
connectivity, hardware, software, and professional development to 
impact teaching and learning to improve student achievement in 
participating elementary or middle schools. One initial finding from 
this evaluation is that participating schools have dramatically 
improved their ability to attract and retain teachers. Teachers who are 
scheduled to retire often choose to stay in these IMPACT schools, 
others request transfers into them, and new teachers clamor to be 
hired. ``These teachers like the way technology is changing the way 
they teach, and the enthusiasm with which their students approach 
learning,'' says Frances Bryant Bradburn, Director of Instructional 
Technology for the North Carolina Department of Public Instruction.
    In the center of Wyoming, there are many small, rural school 
districts that do not have the capacity to create aggressive staff 
development plans. The local Board of Cooperative Education Services 
formed a partnership between six districts focused on helping teachers 
to improve instruction through learning environments. For the first 
time, classes are using smart boards, establishing wireless 
connections, conducting Internet research, and attending compressed 
video classes.
    In Massachusetts, reports from independent evaluators of the EETT 
grant projects and the year-end reports submitted by grant recipients 
show substantial improvement in teacher technology literacy. The use of 
the state's online interactive Technology Self-Assessment Tool (TSAT) 
helps in measuring the progress of teachers' technology skills in the 
different levels. For example, in a Gloucester Public Schools' project, 
there was an increase from 8.5 percent to 27 percent in the number of 
educators at the Proficient level and a decrease from 33.5 percent to 
20 percent in number at the Early Technology level (the lowest level).
    Iowa utilized EETT funds to implement comprehensive professional 
development programs for teachers targeted at core subject areas. 
Initial results from one consortium focusing on mathematics demonstrate 
an increase in student achievement among 4th grade students compared to 
the control group. Iowa is seeing similar results in reading throughout 
the state.

                         IMPACT OF CUTTING EETT

    Education technology is about more than technology--it's about 
education. The EETT program supports every tenet and goal of the No 
Child Left Behind Act. It would be impossible to effectively implement 
NCLB without the technical expertise and leadership the EETT program 
brings. As representatives of the states and districts who make the 
most critical use of educational technology, we urge you to restore the 
funding to $692 million, the funding level that was in place before the 
Omnibus appropriations in November 2004.
    Not only does EETT help improve student achievement through 
technology, it is an efficient use of federal funds. Dale Mann (ASBO, 
2003) notes that districts have two options when trying to increase 
reading scores by one month in grade-level gains: decreasing class size 
or utilizing technology. Class-size reduction would cost approximately 
$636 per student per year compared to $86 for instructional technology. 
EETT provides additional opportunities to help increase student 
achievement.
    The targeted funds for educational technology that are available 
through the EETT program are still very much needed as we work to 
ensure that all students are ready to compete in the global economy. It 
is unrealistic to assume that these technology funds and the leadership 
and innovation that accompany them would be effectively managed through 
other existing education title programs such as Title I and Title IIA. 
These Title programs have not received additional funds to pay for the 
mission critical technology components of their initiatives. Other 
Title programs, unlike EETT, support narrowly defined student 
populations and training purposes rather than the broader mission of 
supporting all students and all programs as EETT currently does. 
Finally, the leadership and expertise needed to implement successful 
data driven decision making, curriculum management systems, online 
professional development, and reporting processes for NCLB would be 
lost if there was an attempt to subsume educational technology planning 
and implementation under these already established programs.
About SETDA--http://www.setda.org
    The State Educational Technology Directors Association (SETDA) is 
the principal association representing the state directors for 
educational technology. SETDA's membership includes educational 
technology directors and staff from the state departments of education 
of all fifty states, the District of Columbia and American Samoa.
                                 ______
                                 
    Prepared Statement of the National Education Knowledge Industry 
                              Association

    NEKIA appreciates the opportunity to inform the Subcommittee of 
NEKIA's appropriations proposals for fiscal year 2006. The mission of 
our association is to advance the development and utilization of 
research-based knowledge for the improvement of the academic 
performance of all children. NEKIA's members are committed to finding 
new and better ways to support and expand high-quality education 
research, development, dissemination, technical assistance, and 
evaluation at the federal, regional, state, tribal, and local levels.
    Our appropriations proposals seek greater federal investments that 
will support the use of research-based knowledge in America's K-12 
classrooms and spur the implementation of the No Child Left Behind Act 
and the Education Sciences Reform Act. These two laws ushered in a new 
era of evidence-based education in which classroom teachers are 
required to use instructional practices based on scientifically based 
research. Our proposals for fiscal year 2006 are also designed to 
address both greater demand for evidence-based education and under-
funded supply.

          NEKIA'S PROPOSALS ARE BASED ON THREE CRITICAL POINTS

    1. Now is the time to enhance and expand the federal system of 
education research, development, dissemination, and technical 
assistance.--Federally supported programs--specifically the Regional 
Educational Labs, the R&D Centers, the Comprehensive Centers and 
Comprehensive School Reform--are playing a vital role in meeting the 
tremendous needs for research-based practices and technical assistance. 
Each of these programs fills a unique role in the spectrum of knowledge 
utilization--from basic research to applied research, from development 
and dissemination to technical assistance, and ultimately student 
achievement. Given that more than 20,000 U.S. public schools are not 
making adequate yearly progress and 10,000 schools are in need of 
improvement under the No Child Left Behind Act, we must become more 
aggressive in using research-based education solutions in the 
classroom.
    NEKIA's members are fully supporting the implementation of No Child 
Left Behind through applied research, development, dissemination, 
technical assistance, and evaluation programs. For example:
    2. Current federal support for education research, development, 
dissemination, and technical assistance lags far behind other federal 
research investments.--While the No Child Left Behind Act clearly 
requires educators to use instructional practices and innovations 
supported by research, the Department of Education spends less than one 
percent of its budget on research, development, and statistics. 
Education is a $745 billion industry representing an estimated 7.2 
percent of the gross domestic product. However, only 0.03 percent is 
spent on research and development. That is only three cents for every 
hundred dollars spent on education. In comparison, other agencies' R&D 
budgets as percentage of their discretionary spending: Defense, 17 
percent; NASA, 68 percent; Energy, 37 percent; HHS, 42 percent; NSF, 74 
percent; and Agriculture, 4.6 percent. In other words, the Department 
of Education's research budget has been and remains among the smallest 
of any federal agency.
    3. To address this capacity crisis we urge Congress to double its 
investments in education knowledge utilization over the next 3 years.--
Not only would increased investments help meet demand, they would also 
address a number of high priorities such as:
  --Improving teacher quality by providing research based information 
        on best practices to teacher training institutions as well as 
        information and technical assistance to schools districts 
        implementing professional development programs.
  --Helping special populations of students meet state adequate yearly 
        progress goals. These special populations include English 
        language learners, special needs children, and students in 
        rural areas.
  --Working with educators to interpret and manage a variety of data 
        about student performance and classroom instruction.
  --Scaling up school improvement efforts at the local level so that 
        reform efforts in single schools can expand to districtwide 
        initiatives.
    To adequately respond to the capacity crisis and meet these 
priorities, NEKIA proposes the following investments:

Priority Investment.--Fund the Regional Educational Laboratories at $70 
        million--an increase of $3 million over fiscal year 2005
    The Regional Educational Laboratories are the nation's key 
institutions for applied education research and development that 
respond to the needs of educators and policy makers. A 2000 Department 
of Education independent evaluation found that educators considered the 
labs among the most trusted institutions in the nation for research 
support and reported they were highly responsive to customers. They are 
also highly responsive to local and regional needs. Regional governing 
boards--representing educators, parents, and businesses from each state 
of each lab region--set research and development priorities for each 
lab. The ability to respond to customers in their regions helps keep 
the laboratories' work focused on real world needs and creating valid 
research, development, tools and assistance in the successful 
implementation of the No Child Left Behind Act. Without the Regional 
Labs, the chain is broken. Without the regional labs, the link between 
basic research and technical assistance would cease to exist.
    Unfortunately, the Regional Education Lab program is at risk. The 
President's budget for fiscal year 2005 proposes to eliminate funding 
for the program. Last year, the Administration proposed eliminating the 
labs. Fortunately, Congress acted in a bipartisan way to fund it. We 
hope Congress will do so again for fiscal year 2006.
Priority Investment.--Fund the Research and Development Centers 
        (included in the Research, Development, and Dissemination Line) 
        at $170 million--an increase of $5 million over fiscal year 
        2005
    The centers address enduring issues of national significance in 
education through sustained and focused research programs. They address 
specific topics such as early childhood development and learning, 
student learning and achievement, at-risk students, adult learning, and 
education policy. The research done by the R&D centers is used by 
regional labs to develop programs, strategies and assessment tools 
which in turn are adapted by technical assistance providers 
(Comprehensive Centers) for the training and tools to implement their 
own programs to assist districts and schools.

Priority Investment.--Fund the Comprehensive Regional Assistance 
        Centers at $60 million--an increase of $3 million over fiscal 
        year 2005
    The purpose of Title II of the Education Sciences Reform Act (ESRA) 
and specifically the newly reformed Comprehensive Centers program 
authorized within it, is to serve as part of a national technical 
assistance and dissemination system, which provides comprehensive 
technical assistance services to states, districts, tribes and schools 
in administering and implementing school reform efforts under No Child 
Left Behind. Their focus is to help schools and districts improve 
opportunities for all children to meet content and performance 
standards. Next year (fiscal year 2006), the 20 new centers will be 
fully operational. The new centers will include the scope of work of 
the current Comprehensive Regional Assistance Centers, the Eisenhower 
Regional Mathematics and Science Consortia, and the Regional Technology 
in Education Consortia.
Priority Investment.--Fund the Comprehensive School Reform program at 
        $233 million--an increase of $30 million over last year
    Comprehensive School Reform targets the neediest schools. Forty-
five percent of CSR schools have poverty rates of 75 percent or 
greater--almost double the rate of Title I schools. And, almost half 
(46 percent) of CSR schools are low performing at the time of funding. 
CSR schools have baseline achievement scores lower than Title I school 
wide programs (in reading and math) at the time of funding. Finally, 
CSR Schools address the whole school and are more likely to use 
research-based models and measurable goals for student performance. 
Unfortunately, the Comprehensive School Reform program is at risk. The 
President's budget for fiscal year 2005 proposes to eliminate funding 
for the program. We hope Congress will act in a bipartisan fashion to 
preserve it.
    NEKIA is very heartened by the continuing interest Congress shows 
in the work of our member organizations to provide the research-based 
tools our children and teachers need to succeed. If we are to ensure 
even greater success for all our children, we must increase the federal 
investment in knowledge utilization efforts.
    Thank you. We appreciate your consideration of our proposals.
                                 ______
                                 
    Prepared Statement of the Science, Technology, Engineering, and 
                 Mathematics (STEM) Education Coalition

    On behalf of the science, technology, engineering, mathematics, 
education and business groups listed here, we thank you for your 
efforts to secure $179 million for the fiscal year 2005 Math and 
Science Partnership program at the U.S. Department of Education (ED). 
The STEM (Science, Technology, Engineering, and Mathematics) Education 
Coalition greatly appreciates your continued support to improve STEM 
education at all levels.
    It is imperative that the work continues and additional funding be 
provided to the ED MSPs so we can ensure that all students receive a 
world-class education in science and math. We understand in these tight 
fiscal times, Congress is unable to provide the NCLB authorization of 
$450 million for the MSPs, but we do support substantial increases in 
order to prepare for the science assessments that will be required in 
2007. Therefore, we urge you to support the President's request of $269 
million for the fiscal year 2006 Math and Science Partnerships under 
Title II, Part B of NCLB.
    Additionally, we urge you to oppose the creation of a new 
initiative that would redirect $120 million of the funds away from the 
ED state-based MSP programs to create a new federal grant program. This 
would require a change to the NCLB statute, cut funds to the states, 
and greatly reduce state flexibility to meet their most critical needs.
    Funding for the ED MSPs goes directly to the states as formula 
block grants. States provide these funds through competitive grants to 
local partnerships of schools, higher education institutions and others 
for reform efforts to meet the NCLB math and science education 
obligations. Most grants go to high-need districts so they can 
strengthen teacher professional development and increase student 
performance in science, mathematics, and technology.
    In summary, we strongly urge Congress to fund the fiscal year 2006 
ED Math and Science Partnerships at $269 million and to oppose efforts 
to redirect $120 million of these funds away from the states.
    If we can provide any additional information or answer questions, 
please contact Patti Curtis at 202.785.7385.
                                 ______
                                 
                Prepared Statement of Teach For America

    Mr. Chairman, Senator Harkin and Members of the Subcommittee: Thank 
you for the opportunity to submit testimony regarding the President's 
fiscal year 2006 budget proposal, which includes $4 million for Teach 
For America under the Corporation for National and Community Service. 
Mr. Chairman and Senator Harkin, I applaud your commitment to national 
service and desire to help AmeriCorps realize its full potential.
    I would like to take this opportunity to discuss Teach For America 
and our current growth plans. I will also focus on the $4 million line 
item in the President's fiscal year 2006 budget under the Corporation 
for National and Community Service and explain why it is critical to 
Teach For America's ability to grow to scale.
    As you know, Teach For America is the national corps of outstanding 
recent college graduates of all academic majors who commit 2 years to 
teach in urban and rural public schools and become lifelong leaders in 
the effort to ensure that all children in our nation have an equal 
chance in life. We are a private, national non-profit organization, as 
well as one of the original AmeriCorps programs. Our teachers receive a 
salary from their local school district as well as education awards 
through AmeriCorps. These education awards can be used for graduate 
level education courses necessary to obtain teacher certification, to 
pay back qualified student loans, or for future education.
    Since 1990, when I founded Teach For America, our organization has 
grown from 500 corps members teaching in 5 regions to what will soon be 
3,200 corps members teaching in 22 regions during the 2005-2006 school 
year. Teach For America corps members are having an impact throughout 
our nation, from St. Louis to Philadelphia, and from New Mexico's 
Navajo Nation to the Rio Grande Valley in South Texas.

                 TEACH FOR AMERICA MEETS CRITICAL NEEDS

    Our mission is to build a movement to eliminate the educational 
inequality that exists in our country today. By the age of nine, 
children in low-income areas are already three grade levels behind in 
reading ability (Source: National Center of Education Statistics, 
2000). As these children progress in the educational system, this 
achievement gap only widens, to the point that a child who grows up in 
a low-income community is seven times less likely to graduate from 
college than a child growing up in a more privileged area (Source: 
Education Trust, 1998).
    Our corps members help close the achievement gap for the students 
they reach during their 2-year commitment. At the same time, they gain 
insight and added commitment that shapes them into an important 
leadership force, working from inside of education and from other 
sectors, for long-term change.

                              OUR PROGRAM

    We recruit the most highly sought-after college graduates of all 
academic majors, career interests, and backgrounds from leading 
colleges and universities. We then select corps members who demonstrate 
records of achievement and leadership, as well as a commitment to 
expanding opportunity for children in low-income areas.
    Admission to Teach For America is highly selective, with 
approximately 12 percent of our applicants gaining admission to the 
corps. Of our 2004 corps members, 93 percent held leadership positions 
on their campuses or in their communities. They earned average SAT 
scores of 1,310 and average GPAs of 3.5. In addition, 31 percent of 
corps members are people of color.
    This year, 17,319 young people applied for only 2,000 slots as 
first year teachers. At many top schools, Teach For America is 
considered one of the most prestigious post-graduate opportunities. 
This year, 12 percent of Spelman's senior class applied to the corps. 
And at top, larger universities, Teach For America attracted 
significant portions of the student body: 12 percent of Yale's seniors 
applied, as did 8 percent of seniors at Princeton and Harvard. All are 
competing for the opportunity to teach in America's neediest schools.
    Corps members are selected into Teach For America if they 
demonstrate strong leadership characteristics such as achievement 
orientation, critical thinking, personal responsibility for success, 
and the ability to influence and motivate others, as well as high 
expectations for students and families in low-income communities and 
the desire to work relentlessly toward this particular mission.
    Those selected attend a summer training institute where corps 
members teach in local public summer schools and participate in a full 
afternoon and evening schedule of professional development activities. 
We aim to ensure that corps members internalize the overarching 
approach utilized by the most successful teachers in urban and rural 
areas; and that they gain skills in instructional planning and 
delivery; building a strong classroom culture; literacy development; 
and teaching the specific content-area and grade-level they will be 
teaching.
    Following the institute, corps members assume teaching positions in 
school districts in 22 urban and rural areas. They are clustered in 
schools and receive extensive ongoing support and professional 
development through Teach For America and through local teacher 
education programs.
    Following their 2-year commitments, corps members can remain in 
teaching (and about 60 percent teach for at least a third year). We 
expect that they will ask themselves how they can have the greatest 
possible impact on the challenges they and their students experienced 
during their 2 years, and we provide a network of resources and support 
that they can tap into as they continue working in educational and 
social reform throughout their lives.

        IMMEDIATE IMPACT ON COMMUNITIES AND STUDENT ACHIEVEMENT

    Our success in recruiting and preparing exceptional classroom 
teachers has led education policy makers to highlight our impact on 
disadvantaged communities. Teach For America corps members impact the 
academic prospects of their students during their first 2 years in the 
classroom and continue to impact the quality of education in low-income 
communities beyond their initial commitments.
    A 2004 independent study by Mathematica Policy Research, Inc 
revealed Teach For America corps members in elementary grades affected 
greater gains than would typically be expected in a year. The study 
also showed corps members even outpaced fully certified and veteran 
teachers in their schools in moving their students ahead academically. 
To put corps members' value-added in context, Mathematica concludes the 
impact of having a Teach For America teacher compared to a non-Teach 
For America teacher (including veteran and certified teachers) is 65 
percent of the impact of reducing class size from 23 to 15 students 
(and is substantially less expensive). The impact of having a corps 
member versus another novice teacher is greater than the impact of 
reducing class size by eighty students. This study essentially 
replicated the results from an earlier study on Teach For America's 
impact by Stanford's Center for Research in Education Outcomes.
    Another way we evaluate corps member impact is through a bi-annual 
survey of principal satisfaction conducted by Kane, Parsons & 
Associates, Inc., an independent research firm. In a June 2004 survey 
by Kane, Parsons & Associates, principals credit Teach For America 
teachers as having positive effects on their schools and on student 
achievement. Nearly three out of four principals reported that corps 
members are more effective than their other beginning teachers. And 
principals rated corps members as good or excellent on multiple 
indicators of effective teaching, including:
  --90 percent--Instructional planning
  --95 percent--Motivation and dedication to teaching
  --96 percent--Achievement orientation and drive to succeed
  --93 percent--Working with other faculty and administrators
  --92 percent--Having high expectations for students; and
  --93 percent--Assuming responsibility for student achievement.

                            LONG-TERM IMPACT

    Teach For America is building a force of leaders and citizens with 
a lifelong commitment to addressing the issues they witness during 
their 2 years of service. Education Week, a leading national journal of 
K-12 education, profiled Teach For America's alumni in an article 
titled ``Most Likely To Succeed'' and called Teach For America a 
``leader-making machine.''
    According to a survey conducted in the fall of 2004, our alumni are 
deeply influenced by their Teach For America experience:
  --Nationally, 63 percent of our alumni are working full-time in 
        education, 39 percent as K-12 teachers and 28 percent as 
        administrators, 4 percent in higher education, and 9 percent in 
        education-related non-profits and other positions in the field 
        of education; and
  --Nearly 200 Teach For America alumni have founded a school or a non-
        profit organization.
    Even more striking is the extent to which Teach For America alumni 
have already assumed leadership in the broader effort to improve 
education--they are running many of the most highly acclaimed charter 
schools in the country; they are turning around major urban schools as 
principals; they are winning some of the highest accolades teachers can 
win (as state and city teachers of the year); they are serving on 
school boards and advising Governors and Members of Congress on 
education policy; and they are leading model education reform, public 
health and economic development initiatives.

       TEACH FOR AMERICA NEEDS INCREASED FUNDING TO GROW TO SCALE

    Teach For America is in the midst of a 5-year expansion plan to 
more than double the size of its teacher corps. Currently, Teach For 
America has over 3,000 teachers in 22 communities and a budget of under 
$39 million. In the 2006-2007 school year, Teach For America will have 
nearly 3,500 corps members and will need to raise a budget in excess of 
$50 million. At that scale, Teach For America teachers will reach more 
than 300,000 public school students every day in this country's lowest-
income neighborhoods.
    Seventy-five percent of our funding comes from private sources, 
much of it from the local communities where our teachers teach. We have 
a highly diversified base of more than 2,000 private donors from all 
over the country. Top donors include Don and Doris Fisher's Pisces 
Foundation; the Broad Foundation; New Profit; the Atlantic 
Philanthropies; and Wachovia Corporation.
    To raise our expanded budget, we must significantly increase our 
private funding base while growing our federal funding proportionately. 
With adequate federal funding, we can expand to reach more communities 
and engage more recent college graduates while continuing to provide 
highly qualified teachers for America's neediest classrooms. The 
Corporation for National and Community Service's $4 million fiscal year 
2006 budget line item would allow us to maintain our current ratio of 
federal to private funding and enable us to execute our growth plan.

                               CONCLUSION

    I hope you will agree that we have demonstrated all the 
characteristics of an exemplary AmeriCorps program: we recruit talented 
young people into competitive positions in critical areas of public 
need; we have a significant impact in the communities we serve; we 
influence the civic commitment and career path of our corps members; 
and we leverage our public support for significant private resources. 
As we continue our efforts to more than double in size and reach 
hundreds of thousands of children each year, we seek your support so 
that Teach For America can expand its scale and impact. Mr. Chairman 
and Members of the Subcommittee, we hope you will support the 
President's request for $4 million for Teach for America in the fiscal 
year 2006 budget.
                                 ______
                                 
       Prepared Statement of the United Tribes Technical College

                           SUMMARY OF REQUEST

    For 36 years United Tribes Technical College (UTTC) has been 
providing postsecondary vocational education, job training and family 
services to Indian students from throughout the nation. Our request for 
fiscal year 2006 funding for tribally controlled postsecondary 
vocational institutions as authorized under Section 117 of the Carl 
Perkins Vocational and Applied Technology Act is:
  --$8.5 million under Section 117 of the Perkins Act, which is $1.1 
        million over the fiscal year 2005 enacted level of $7,406,250. 
        This funding is essential to our survival, as we receive no 
        state-appropriated vocational education monies.
  --Ensure that the provision that has been included since fiscal year 
        2002 in the Labor-HHS Education Appropriations Acts that waived 
        the regulatory requirement that we utilize a restricted 
        indirect cost rate is continued.
  --Funding for renovation of our facilities, many of which are 
        original to the Fort Abraham Lincoln army installation. A 
        recent study commissioned by the Department of Education shows 
        a facility need for UTTC of $49 million.
  --We support the recommendations of the American Indian Higher 
        Education Consortium, including $32 million for the 
        Strengthening Developing Institutions Program for tribal 
        colleges (Section 316).

                     RESTRICTED INDIRECT COST ISSUE

    Beginning in fiscal year 2002 the Labor-HHS-Education 
Appropriations Act provided that notwithstanding any law or regulation, 
that Section 117 Perkins grantees are not required to utilize a 
restricted indirect cost rate. We thank you for taking this action, and 
ask that it be continued in the fiscal year 2006 Act. We also point out 
that the pending Perkins reauthorization bills, S.250 and H.R. 366, 
contain a provision that would exempt Section 117 grantees from the 
requirement to utilize a restricted indirect cost rate.
    In 2001, the Department of Education, for the first time, directed 
Indian grantees (both Section 116 and 117 grantees) to apply a 
``restricted indirect cost rate'' to their grants. This means each 
tribal grantee must obtain another indirect cost rate--exclusively for 
its Perkins Act grant--from its cognizant federal agency (which in most 
cases is the Inspector General for the Department of the Interior.)
    The Department gave two reasons for applying a restricted rate to 
these Perkins Act Indian programs: (1) The 1998 Amendments to the 
Perkins Act (Sec. 311(a)) prohibits the use of Perkins Act grant funds 
to supplant non-federal funds expended for vocational/technical 
programs. This ``supplement, not supplant'' limitation previously 
applied to State grants, only; and (2) A long-standing Department of 
Education regulation (promulgated years before the 1998 Perkins 
Amendments) automatically applies the restricted indirect cost rate 
requirement to any Department of Education grant program with a 
``supplement, not supplant'' provision.
    UTTC has no quarrel with the bases and objectives of the 
``supplement, not supplant'' rule and seeks no change to this statutory 
provision. The primary targets of this rule are States and possibly 
local government entities that run vocational education programs with 
State or local funds.
    By contrast, however, UTTC has little or no ability to violate this 
rule, as we have no source of non-federal funds to operate vocational 
education programs. Unlike States, we have no tax base and no source of 
non-federal funds to maintain a vocational education program. We depend 
on federal funding for our vocational/technical education program 
operations. Despite our inability to violate the supplanting 
prohibition, we are, nonetheless, being disadvantaged by a Department 
of Education regulation intended to enforce the prohibition against 
States who do have the ability to supplant.
  --Impact of new requirement on grantees.--Under DoEd regulations, a 
        ``restricted indirect cost rate'' makes unallowable certain 
        indirect costs that are considered allowable by other federal 
        programs. Primarily, these are costs that DoEd believes the 
        grantee would otherwise incur if it did not receive a Perkins 
        grant, such as the cost of the grantee's chief officer and 
        heads of departments who report to the CEO, as well as the 
        costs of maintaining offices for these personnel.
    Prohibiting the Perkins grant from contributing its appropriate 
share to the grantee's indirect cost pool will most likely mean that 
other federal programs operated by the grantee would be expected to 
pick up a great share of the indirect cost pool. This outcome may well 
result in objections from the other program agencies that do not want 
to bear costs properly attributable to the Perkins grant.
    We are caught between conflicting federal agency requirements and 
will find ourselves unable to recover the necessary share of indirect 
costs attributable to each of the federal programs we operate.

                      UTTC PERFORMANCE INDICATORS

    UTTC has:
  --An 85 percent retention rate
  --A placement rate of 95 percent (job placement and going on to 4-
        year institutions)
  --A projected return on federal investment of 11 to 1 (2003 study 
        comparing the projected earnings generated over a 29-year 
        period of UTTC Associate of Applied Science graduates with the 
        cost of educating them.)
  --The highest level of accreditation. The North Central Association 
        of Colleges and Schools has accredited UTTC again in 2001 for 
        the longest period of time allowable--10 years or until 2011--
        and with no stipulations. We are also the only tribal college 
        accredited to offer on-line associate degrees.
    The demand for our services is growing and we are serving more 
students.--For the 2003-2004 school year we enrolled 661 Indian 
students. For the 2004-2005 school year we enrolled 753 Indian 
students, for an increase of 13 percent over the prior year. The 753 
Indian students we enrolled are from 54 tribes and 22 states. The 
majority of our students are from the Great Plains states, an area 
that, according to the 2001 BIA Labor Force Report, has an Indian 
reservation jobless rate of 75 percent. UTTC is proud that we have an 
annual placement rate of 95 percent. We hope to enroll 2000 adult 
students by 2008.
    In addition, as of the 2004-2005 year, we have served 257 students 
in our Theodore Jamerson Elementary school, and 226 children in our 
infant-toddler and pre-school programs.
    The total population for whom we provided direct services to in the 
2004-2005 academic year is 1,236. This is an increase in our overall 
total population of 17 percent from the 2003-2004 school year.
    UTTC course offerings and partnerships with other educational 
institutions.--We offer 17 AAS degrees, 5 of which have been approved 
to be offered on-line, and 11 certificate degrees. We are accredited by 
the North Central Association of Colleges and Schools. Our course which 
has the highest number of students is the Licensed Practical Nursing 
program.
     We are very excited about the recent additions to our course 
offerings, and the particular relevance they hold for Indian 
communities. These programs are: (1) Injury Prevention, (2) On-Line 
Education, (3) Nutrition and Food Services, (4) Tribal Government 
Management, (5) Tourism, and (6) Tribal Environmental Science.
    Tribal Environmental Science.--Our newest course offering is Tribal 
Environmental. Science. It is being established through a National 
Science Foundation Tribal College and Universities Program grant. The 
5-year project will support UTTC in planning and implementing an 
innovative environmental science program. The program is slated to be 
developed by this summer, beginning with a three week intense student 
skill-building program. The course work will lead to a 2-year associate 
of applied science degree in Tribal Environmental Science.
    Injury Prevention.--Through our Injury Prevention Program we are 
addressing the injury death rate among Indians, which is 2.8 times that 
of the U.S. population. We received assistance through Indian Health 
Service to establish the only degree-granting Injury Prevention program 
in the nation. Injuries are the number one cause of mortality among 
Native people for ages 1-44 and the third for overall death rates.
    On-Line Education.--We are working to bridge the ``digital divide'' 
by providing web-based education and Interactive Video Network courses 
from our North Dakota campus to American Indians residing at other 
remote sites and as well as to students on our campus. This semester 
have 45 students, a number of whom are campus-based, taking on-line 
courses. We are accredited by the North Central Association of Colleges 
and Schools to provide on-line associate degrees. This approval is 
required in order for us to offer federal financial aid to students 
enrolled in these on-line courses.
    On-line courses provide the scheduling flexibility students need, 
especially those students with young children. Our on-line education is 
currently provided in the areas of Early Childhood Education, Injury 
Prevention, Health Information Technology, Nutrition and Food Service 
and Elementary Education. We are the only tribal college accredited to 
offer on-line associate degrees.
    Computer Technicians.--In the second year of implementation, the 
Computer Support Technician program is at maximum student capacity. In 
order to keep up with student demand, we will need more classrooms, 
equipment and instructors. Our program includes all of the Microsoft 
Systems certifications that translate into higher income earning 
potential for graduates.
    Nutrition and Food Services.--UTTC will meet the challenge of 
fighting diabetes in Indian Country through education. As this 
Subcommittee knows, the rate of diabetes is very high in Indian 
Country, with some tribal areas experiencing the highest incidence of 
diabetes in the world. About half of Indian adults have diabetes 
(Diabetes in American Indians and Alaska Natives, NIH Publication 99-
4567, October 1999).
    We offer a Nutrition and Food Services Associate of Applied Science 
degree in an effort to increase the number of Indians with expertise in 
nutrition and dietetics. Currently, there are only a handful of Indian 
professionals in the country with training in these areas. Future 
improvement plans include offering a Nutrition and Food Services degree 
with a strong emphasis on diabetes education and traditional food 
preparation.
    We also established the United Tribes Diabetes Education Center to 
assist local tribal communities and our students and staff in 
decreasing the prevalence of diabetes by providing diabetes educational 
programs, materials and training. We published and made available 
tribal food guides to our on-campus community and to tribes.
    Tribal Government Management/Tourism.--Another of our new programs 
is tribal government management designed to help tribal leaders be more 
effective administrators. We continue to refine our curricula for this 
program.
    A recently established education program is tribal tourism 
management. We developed the core curricula for the tourism program and 
are partnering with three other tribal colleges (Sitting Bull, Fort 
Berthold, and Turtle Mountain) in this offering. The development of the 
tribal tourism program was timed to coincide with the planned 
activities of the national Lewis and Clark Bicentennial in 2003.
    Job Training and Economic Development.--UTTC is a designated 
Minority Business Center serving Montana, South Dakota and North 
Dakota. We also administer a Workforce Investment Act program and an 
internship program with private employers.
    Economic Development Administration funding was made available to 
open a ``University Center.'' The Center is used to help create 
economic development opportunities in tribal communities. While most 
states have such centers, this center is the first-ever tribal center.
    Upcoming Endeavors.--We are seeking to develop a Memorandum of 
Understanding with the BIA's Police Academy in New Mexico that would 
allow our criminal justice program to be recognized for the purpose of 
BIA and Tribal police certification, so that Tribal members from the 
BIA regions in the Northern Plains, Northwest, Rocky Mountain, and 
Midwest areas would not have to travel so far from their families to 
receive training. Our criminal justice program is accredited and 
recognized as meeting the requirements of most police departments in 
our region.
    We are also interested in developing training programs that would 
assist the BIA in the area of provision of trust services. We have 
several technology disciplines and instructors that are capable of 
providing those kinds of services with minimum of additional training. 
We also provide training in health records technology that that fit 
within the training needs of the Indian Health Service.
    Department of Education Study Documents our Facility/Housing 
Needs.--The 1998 Vocational Education and Applied Technology Act 
required the Department of Education to study the facilities, housing 
and training needs of our institution. That report was published in 
November 2000 (``Assessment of Training and Housing Needs within 
Tribally Controlled Postsecondary Vocational Institutions, November 
2000, American Institute of Research''). The report identified the need 
for $17 million for the renovation of existing housing and 
instructional buildings and $30 million for the construction of housing 
and instructional facilities.
    We continue to identify housing as our greatest need. We have a 
current waiting list of 64 families. Some families must wait from 1 to 
3 years for admittance due to lack of available housing. In 2003-2004, 
we were forced to find housing off campus for 52 families. In 2004-2005 
we housed 105 families off campus, a 50 percent increase over the prior 
year. In order to accommodate the enrollment increase, UTTC partners 
with local renters and two county housing authorities (Burleigh, 
Morton).
    UTTC has a new 86-bed single-student dormitory on campus. It is 
already completely full as are all of our other dormitories and student 
housing. To build the dormitory, we formed an alliance with the U.S. 
Department of Education, the U.S. Department of Agriculture, the 
American Indian College Fund, the Shakopee-Mdewakanton Sioux Tribe and 
other sources for funding. Our new dormitory has at the same time 
created new challenges such as shortages in classroom, office and other 
support facility space. However, more housing must be built to 
accommodate those on the waiting list and to meet expected increased 
enrollment. We also have housing which needs renovation to meet safety 
codes.
    Thank you for your consideration of our request. We cannot survive 
without the basic vocational education funds that come through the 
Department of Education's Perkins funds. They are essential to the 
operation of our campus and essential to the welfare of Indian people 
throughout the Great Plains region and beyond.
                                 ______
                                 

                            RELATED AGENCIES

Prepared Statement of the National Federation of Community Broadcasters

    Thank you for the opportunity to submit testimony to this 
Subcommittee regarding the appropriation for the Corporation for Public 
Broadcasting (CPB). As the President and CEO of the National Federation 
of Community Broadcasters, I speak on behalf of nearly 257 community 
radio stations and related organizations across the country. Nearly 
half our members are rural stations and half are minority controlled 
stations. In addition, our members include many of the new Low Power FM 
stations that are putting new local voices on the airwaves. NFCB is the 
sole national organization representing this group of stations which 
provide service in the smallest communities of this country as well as 
the largest metropolitan areas.
    In summary, the points we wish to make to this Subcommittee are 
that NFCB:
  --Requests $430 million in funding for CPB for fiscal year 2008, a 
        $30 million increase over the fiscal year 2006 advance 
        appropriation;
  --Requests $45 million in fiscal year 2005 for conversion of public 
        radio and television to digital broadcasting. Also supports 
        funding for the Public TV interconnection system;
  --Requests that advance funding for CPB is maintained to preserve 
        journalistic integrity and facilitate planning and local 
        fundraising by public broadcasters;
  --Requests report language to ensure that CPB utilizes digital funds 
        it receives for radio as well as television needs;
  --Supports CPB activities in facilitating programming and services to 
        Native American and Latino radio stations;
  --Supports CPB's efforts to help public radio stations utilize new 
        distribution technologies and requests that the Subcommittee 
        ensure that these technologies are available to all public 
        radio services and not just the ones with the greatest 
        resources.
    Community Radio fully supports $430 million in federal funding for 
the Corporation for Public Broadcasting in fiscal year 2008.--Federal 
support distributed through CPB is an essential resource for rural 
stations and for those stations serving minority communities. These 
stations provide critical, life-saving information to their listeners 
and are often in communities with very small populations and limited 
economic bases, thus the community is unable to financially support the 
station without federal funds.
    In larger towns and cities, sustaining grants from CPB enable 
Community Radio stations to provide a reliable source of noncommercial 
programming about the communities themselves. Local programming is an 
increasingly rare commodity in a nation that is dominated by national 
program services and concentrated ownership of the media.
    For the past 29 years, CPB appropriations have been enacted 2 years 
in advance. This insulation has allowed pubic broadcasting to grow into 
a respected, independent, national resource that leverages its federal 
support with significant local funds. Knowing what funding will be 
available in advance has allowed local stations to plan for programming 
and community service and to explore additional non-governmental 
support to augment the federal funds. Most importantly, the insulation 
that advance funding provides ``go[es] a long way toward eliminating 
both the risk of and the appearance of undue interference with and 
control of public broadcasting.'' (House Report 94-245.)
    For the last few years, CPB has increased support to rural stations 
and committed resources to help public radio take advantage of new 
technologies such as the Internet, satellite radio and digital 
broadcasting. We commend these activities which we feel provide better 
service to the American people but want to be sure that the smaller 
stations with more limited resources are not left out of this 
technological transition. We ask that the Subcommittee include language 
in the appropriation that will ensure that funds are available to help 
the entire public radio system utilize the new technologies, 
particularly rural and minority stations.
    NFCB commends CPB for the leadership it has shown in supporting and 
fostering the programming services to Latino stations and to Native 
American stations. For example, Satelite Radio Bilingue provides 24 
hours of programming to stations across the United States and Puerto 
Rico addressing issues in Spanish of particular interest to the Latino 
population. At the same time, American Indian Radio on Satellite 
(AIROS) is distributing programming for the Native American stations, 
arguably the fastest growing group of stations. There are now over 30 
stations controlled by and serving Native Americans, primarily on 
Indian reservations.
    This year CPB funded the establishment of the Center for Native 
American Public Radio (CNAPR). Based on a comprehensive assessment of 
the Native American Radio System, CNAPR will develop new funding 
sources for stations and programming; provide direct services to the 
Native Radio System; encourage collaborations; and represent the Native 
Radio System. These stations are critical in serving local isolated 
communities (all but one are on Indian Reservations) and in preserving 
cultures that are in danger of being lost. CPB's assessment recognized 
that ``. . . Native Radio faces enormous challenges and operates in 
very difficult environments.'' CPB funding is critical to these rural, 
minority stations. CPB's funding of the Intertribal Native Radio Summit 
in 2001 helped to pull these isolated stations together into a system 
of stations that can support each other. The CPB assessment goes on to 
say ``Nevertheless, the Native Radio system is relatively new, fragile 
and still needs help building its capacity at this time in its 
development.'' The Center for Native American Public Radio promises to 
leverage additional, new funding to ensure that these stations can 
continue to provide essential services to their communities.
    CPB also funded a Summit for Latino Public Radio which took place 
in September 2002 in Rohnert Park, California, home of the first Latino 
Public Radio station. These Summits have expanded the circle of support 
for Native and Latino Public Radio and identified projects that will 
improve efficiency among the stations through collaborations and 
explore new ways of reaching the target audiences.
    CPB plays a very important role for the public and Community Radio 
system. They are the convener of discussions on critical issues facing 
us as a system. They support research so that we have a better 
understanding of how we are serving listeners. And they provide funding 
to programming, new ventures, expansion to new listeners, and projects 
that improve the efficiency of the system. This is particularly 
important at a time when there are so many changes in the radio and 
media environment with new distribution technologies and media 
consolidation. An example of this support is the grant that NFCB 
received to update and publish our Public Radio Legal Handbook online. 
This provides easy-to-read information to stations about complying with 
governmental regulations so that stations can function legally and use 
their precious resources for programming instead of legal fees.
    Finally, Community Radio supports $45 million in fiscal year 2006 
for conversion to digital broadcasting by public radio and 
television.--It is critical that this digital funding be in addition to 
the on-going operational support that CPB provides. The President's 
proposal that digital money should be taken from the fiscal year 2006 
CPB appropriation would effectively cut stations' grants by more than 
25 percent. This would have a devastating impact as stations trying to 
recover from hard economic times. And it would come at a time when the 
local voices of community and public radio are especially important to 
notify and support people during emergency situations and to help 
communities deal with the loss of loved ones--things that commercial 
radio is no longer able to do because of media consolidation.
    While public television's digital conversion needs are mandated by 
the FCC, public radio is converting to digital to provide more public 
service and to keep up with what commercial radio is doing. The Federal 
Communications Commission has approved a standard for digital radio 
transmission. CPB has provided funding for 301 transmitters in 42 
states to convert to digital, is supporting additional research on AM 
radio conversion, and is working with radio transmitter and receiver 
manufacturers to build in the capacity to provide a second channel of 
programming. Most exciting to public and community radio is the 
encouraging results of tests that National Public Radio has conducted, 
with funding from CPB, that indicate that stations can broadcast two 
high-quality signals, even while they continue to provide the analog 
signal. The development of second audio channels will potentially 
double the public service that public radio can provide, particularly 
in service to unserved and underserved communities. This initial 
funding still leaves more than 500 radio transmitters that will 
ultimately need to convert to digital or be left behind.
    Federal funds distributed by the CPB should be available to all 
public radio stations eligible for Federal equipment support through 
the Public Telecommunications Facilities Program (PTFP) of the National 
Telecommunications and Information Agency of the Department of 
Commerce. In previous years, Federal support for public radio has been 
distributed through the PTFP grant program. The PTFP criteria for 
funding are exacting, but allow for wider participation among public 
stations. Stations eligible for PTFP funding and not for CPB funding 
include small-budget, rural and minority controlled stations and the 
new Low Power FM service.
    Community Radio also supports funding for the public television 
interconnection system. Interconnection is vital to the delivery of the 
high quality programming that public broadcasting provides to the 
American people.
    We appreciate Congress' direction to CPB that it utilize its 
digital conversion fund for both radio and television and ask that you 
ensure that the funds are used for both media. Congress stated, with 
regard to fiscal year 2000 digital conversion funds:

    ``The required (digital) conversion will impose enormous costs on 
both individual stations and the public broadcasting system as a whole. 
Because television and radio infrastructures are closely linked, the 
conversion of television to digital will create immediate costs not 
only for television, but also for public radio stations (emphasis 
added). Therefore, the Committee has included $15,000,000 to assist 
radio stations and television stations in the conversion to 
digitalization . . . .'' (S. Rpt. 105-300)

    This is a period of tremendous change. Digital is transforming the 
way we do things; new distribution avenues like digital satellite 
broadcasting and the Internet are changing how we define the business 
we are in; the concentration of ownership in commercial radio makes 
public radio in general, and Community Radio in particular, more 
important as a local voice than we have ever been. New Low Power FM 
stations are providing new local voices in their communities. Community 
radio is providing essential local emergency information, programming 
about the local impact of the major global events taking place, 
culturally appropriate information and entertainment in the language of 
the native culture, as well as helping to preserve cultures that are 
dying out.
    During this time, the role of CPB as a convener of the system 
becomes even more important. The funding that it provides will allow 
the smaller stations to participate along with the larger stations 
which have more resources, as we move into a new era of communications.
    Thank you for your consideration of our testimony. If the 
Subcommittee has any questions or needs to follow-up on any of the 
points expressed above, please contact: Carol Pierson, President and 
CEO, National Federation of Community Broadcasters, Telephone: 510 451-
8200 Fax: 510-451-8208 E-mail: [email protected]
    The NFCB is a 30-year-old grassroots organization which was 
established by, and continues to be supported by, our member stations. 
Large and small, rural and urban, the NFCB member stations are 
distinguished by their commitment to local programming, community 
participation and support. NFCB's 257 members come from across the 
United States, from Alaska to Florida, from every major market to the 
smallest Native American reservation. While the urban member stations 
provide alternative programming to communities that include New York, 
Minneapolis, San Francisco and other major markets, the rural members 
are often the sole source of local and national daily news and 
information in their communities. NFCB's membership reflects the true 
diversity of the American population: 41 percent of the members serve 
rural communities and 46 percent are minority radio services.
    On Community Radio stations' airwaves examples of localism abound: 
on KWSO in Warm Springs, Oregon, you will hear morning drive programs 
in their Native language; throughout the California farming areas in 
the central valley, Radio Bilingue programs five stations targeting 
low-income farm workers; in Chevak, Alaska, on KCUK you will hear the 
local weather reports and public service announcements in Cup'ik/Yup'ik 
Eskimo; in Dunmore, West Virginia, you will hear coverage of the local 
school board and county commission meetings; KABR in Alamo, New Mexico 
serves its small isolated Native American population with programming 
almost exclusively in Navajo; and on WWOZ you can hear the sounds and 
culture of New Orleans throughout the day and night.
    In 1949 the first Community Radio station went on the air. From 
that day forward, Community Radio stations have been reliant on their 
local community for support. Today, many stations are partially funded 
through the Corporation for Public Broadcasting grant programs. CPB 
funds represent under10 percent of the larger stations' budgets, but 
can represent up to 50 percent of the budget of the smallest rural 
stations.
                                 ______
                                 
    Prepared Statement of the National Minority Public Broadcasting 
                               Consortia

  --National Asian American Telecommunications Association
  --National Black Programming Consortium
  --Latino Public Broadcasting Project
  --Native American Public Telecommunications
  --Pacific Islanders in Communications
    The National Minority Public Broadcasting Consortia (Minority 
Consortia) submits this statement on the fiscal year 2008 appropriation 
for the Corporation for Public Broadcasting (CPB) and CPB's fiscal year 
2006 digital conversion funding. Our primary missions are to bring a 
significant amount of programming from our communities into the 
mainstream of PBS and public broadcasting. In summary, we ask the 
Committee to:
  --Encourage CPB to increase its efforts for diverse programming with 
        commensurate increases for minority programming and the 
        Minority Consortia;
  --Encourage CPB to continue its support for the Native radio system;
  --Reject the Administration's proposal to end advance funding for the 
        Corporation for Public Broadcasting;
  --Reject the Administration's proposal to divert $82 million of 
        already-appropriated fiscal year 2006 funds to digital 
        conversion and satellite interconnection and to rescind an 
        additional $10 million;
  --Recommend at least $430 million for CPB core funding for fiscal 
        year 2008, a $30 million increase over fiscal year 2007;
  --Support CPB's request of $45 million in fiscal year 2006 funds for 
        digital conversion, but require that some of it be made 
        available to independent producers. Also support CPB request of 
        $52 million for the interconnection system for public radio and 
        television.
    We are dismayed at the Administration's continued proposals 
regarding public broadcasting. The quality gap between network 
television and public television has never been wider, and it continues 
to grow with each new ``reality'' show. Administration proposals to end 
forward funding of CPB and to divert already appropriated funds would 
dramatically reduce the development of programming for public 
broadcasting.
    Advance Funding.--We strongly oppose the Administration's proposal 
that the advance funding for CPB be eliminated, a proposal that would 
stop CPB funding for two years. We appreciate that Congress has 
rejected this proposal each of the last four years. Reasons to continue 
advance funding for CPB include:
  --The production of programming for public broadcasting usually takes 
        several years and substantial lead time is needed for planning.
  --Public broadcasting programs are supported by multiple funding 
        sources, and two years advance knowledge of the amount of 
        federal funding allows CPB to better leverage its federal funds 
        to bring in other sources of revenue.
  --The Minority Consortia administers a significant amount of CPB 
        programming monies, and elimination of advance funding would 
        negatively affect our organizations' planning and fundraising 
        activities.
    Proposed Diversion of Fiscal Year 2006 CPB Funds.--We are extremely 
concerned about the Administration's proposal to rescind $10 million 
and divert an additional $82 million of already appropriated fiscal 
year 2006 CPB funds to digital conversion and satellite 
interconnection. Such a rescission/diversion of funds would wreck havoc 
on our organizations and the independent producers that we help support 
as well as many radio and television stations. We would be faced with a 
25 percent reduction of CPB funds should Congress approve this proposal 
by the Administration.
    CPB Fiscal Year 2008 Appropriation.--We support a fiscal year 2008 
federal appropriation for CPB of at least $430 million. This would be a 
reasonable, albeit modest, contribution toward our national treasure of 
public broadcasting. The debate of the past several years regarding 
public television and public radio has highlighted the great esteem in 
which they are held.
    Public broadcasting, including PBS and NPR, is particularly 
important for our nation's growing minority and ethnic communities. 
While there is a niche in the commercial broadcast and cable world for 
quality programming about our communities and our concerns, it is in 
the public broadcasting industry where minority communities and 
producers are more able to bring quality programming for national 
audiences. Additionally, public television and radio is universally 
available.
    Digital Conversion Assistance.--We support CPB's request for $45 
million in fiscal year 2006 funds for digital conversion funding for 
CPB.
    With stations able to broadcast on multiple channels, there will be 
a need for a tremendous amount of new, quality public broadcasting 
programming. There are costs involved in the conversion which go beyond 
the significant equipment and hardware needs of stations. It will also 
take additional money to produce programming for digital broadcast. All 
producers face these new, higher costs.
    Part of the equation in bringing more high quality diverse 
programming to public broadcasting is that independent producers be 
able to transition to digital production. Federal funding for digital 
conversion should include assistance for independent producers.
    About the National Minority Public Broadcasting Consortia.--With 
primary funding from the Corporation for Public Broadcasting, the 
Minority Consortia serves as an important component of American public 
television. By training and mentoring the next generation of minority 
producers and program managers we are able to ensure the future 
strength of public television and radio television programming from our 
communities. Individually, each Consortia organization is engaged in 
cultivating ongoing relationships with the independent producer 
community by providing technical assistance, program funding, 
programming support and distribution. We also provide numerous hours of 
programming to individual public television and radio stations.
    Through our outreach we help bring an awareness of the value of 
public media among communities which have historically been untapped by 
public television. Through innovative outreach campaigns, local 
screenings of works destined for public television, and promotion of 
web-based information and programming, communities of color are 
embraced rather than ignored. The Minority Consortia's work in 
educational distribution further increases the value of public 
television programming by sharing its works with thousands of students.
    While the Consortia organizations work on projects specific to 
their communities, the five organizations also work collaboratively. 
One example is our joint effort on the public television four-part 
series, Matters of Race that aired in the Fall of 2003. That series 
explored the complexity of our rapidly changing multiracial, 
multicultural society in America. The project resulted in more than 
television programming. The project was designed so that modules could 
be pulled out for classroom use. It was also formatted for radio 
broadcast and for the internet, and included extended interviews. This 
project provided a great opportunity for extensive and diverse 
community outreach and collaboration throughout its development, 
distribution, and use.
    We also worked with American Public Television on 6 one-hour 
programs (named Colorvision) featuring the work of Native American, 
Asian American, Pacific Islander, Latino and African American 
filmmakers and television producers. It is now in national distribution 
for all public television stations.
    The programming we, both as individual organizations and 
collaboratively, help bring to public television is beyond the 
production reach of most local television stations. We support the 
bill's proposal for increased funding for the production of local 
programming but believe there is also a great need for increased 
funding for major programming efforts such as those we and other 
independent producers undertake.
    From 1997 to 2002, the Minority Consortia delivered over 88.5 hours 
of quality public television programming. Collectively, we have also 
funded 250 projects and 440 producers/directors. These accomplishments 
have been recognized with over 123 prestigious national and regional 
awards, including numerous Emmys. While most of our work is focused on 
film, of note is that the Native American Public Telecommunications 
(NAPT) also works in the area of public radio. NAPT developed the 
Native American public radio satellite network (AIROS) that provides 
live radio streaming 24 hours a day to over 70 Native American and 
mainstream public radio stations in the United States (including 
Alaska).
    CPB Funds for the Minority Consortia.--The National Minority Public 
Broadcasting Consortia currently receives funds from two portions of 
the CPB budget, organization support funds from the Systems Support and 
programming funds from the Television Programming sections. CPB 
financial support is critical to the work of our organizations. We 
believe that we make a major contribution to public broadcasting with a 
very modest amount of funding, but there is so much more that should be 
done.
    The organizational support funds we receive from CPB are used not 
only for operations requirements but for also for a broad array of 
programming support activities and for outreach to our communities. We 
received $2 million in fiscal year 2005 CPB funds for organizational 
support ($400,000 for each organization). This represents 0.51 percent 
of the fiscal year 2005 CPB appropriation. We have received only very 
small increases in operations support funds in the past several years.
    The programming funds we receive from CPB are re-granted to 
producers, used for purchase of broadcast rights and other related 
programming activities. Each organization solicits applications from 
our communities for these programming funds. We received $3.1 million 
in fiscal year 2005 CPB funds for programming ($636,363 for each 
organization). This represents 0.81 percent of the fiscal year 2004 CPB 
appropriation. Our CPB programming funds have remained virtually flat 
over the past nine years, despite increases in CPB appropriations.
    The Minority Consortia works closely with CPB. We value our 
relationship with CPB and appreciate the financial and technical 
assistance provided to us by that organization. We do not doubt CPB's 
commitment to increasing the diversity of programming on public 
television and radio but also believe they can do more with the 
resources at hand. The oft-stated commitment of CPB and Congress for 
increased multicultural programming combined with seven years of 
funding increases should translate into significant progress. We ask 
this Committee to urge CPB to increase its support for the Minority 
Consortia as part of an effort to bring more quality multicultural 
programming to public television.
    Native Radio.--Native American Public Telecommunications--one of 
the five Minority Consortia organizations--works with both the radio 
and television sides of public broadcasting. NAPT operates American 
Indian Radio on Satellite (AIROS) which distributes programming to 
Native-owned and other radio stations. Koahnic Broadcasting 
Corporation, headquartered in Alaska, also produces and distributes 
Native American programming.
    Native-owned radio is the fastest growing area of community radio. 
There are currently 33 Native-owned stations, all but one of which is 
located in Indian country. We greatly appreciate CPB's central role in 
the establishment late last year of the Center for Native American 
Public Radio (CNAPR), an organization that will provide technical and 
other services to Native radio stations. CNAPR's mission also includes 
developing new sources of revenue for the Indian radio system and being 
an advocate for Native radio. CPB is providing $1.5 million over a 
three-year period for CNAPR.
    We ask that this Committee urge CPB to continue its support for 
Native radio.
    Thank you for your consideration of our recommendations. We see new 
opportunities to increase diversity in programming, production, 
audience, and employment in the new media environment, and thank you 
for your long time support of our work on behalf of our communities.
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