- DEPARTMENTS OF LABOR, HEALTH AND HUMAN SERVICES, AND EDUCATION, AND RELATED AGENCIES APPROPRIATIONS FOR FISCAL YEAR 2013

[Senate Hearing 112-]
[From the U.S. Government Publishing Office]

DEPARTMENTS OF LABOR, HEALTH AND HUMAN SERVICES, AND EDUCATION, AND
RELATED AGENCIES APPROPRIATIONS FOR FISCAL YEAR 2013

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

[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:]
DEPARTMENTAL WITNESSES
RAILROAD RETIREMENT BOARD
Prepared Statement of Michael S. Schwartz, Chairman of the Board
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 2013 budget request of $112,415,000 to
operate the agency.
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. In recent years,
the RRB has also administered extended unemployment benefits under the
American Recovery and Reinvestment Act of 2009 (Public Law 111-5) and
the Worker, Homeownership, and Business Assistance Act of 2009 (Public
Law 111-92), as amended. The recently enacted Middle Class Tax Relief
and Job Creation Act of 2012, (Public Law 112-96) provides extended
unemployment benefits for periods of eligibility beginning through
calendar year 2012.
During fiscal year 2011, the RRB paid $11 billion, net of
recoveries and offsetting collections, in retirement and survivor
benefits to about 578,000 beneficiaries. We also paid $90.9 million in
net unemployment and sickness insurance benefits under the Railroad
Unemployment Insurance Act and $7.8 million under Public Law 111-92, as
amended, for special extended unemployment benefits to a total of about
28,000 claimants. In addition, the RRB paid benefits on behalf of the
Social Security Administration amounting to $1.4 billion to about
115,000 beneficiaries.
proposed funding for agency administration
The President's proposed budget would provide $112,415,000 for
agency operations, which would enable us to maintain a staffing level
of 885 full-time equivalent staff years (FTEs) in 2013. The proposed
budget would also provide $3,562,000 for conversion of our obsolete
integrated financial management system to a shared service provider.
Furthermore, $1,176,000 would be invested into more information
technology (IT) to continue stretching the value of our baseline
funding that has remained substantially below required amounts for the
past 3 years. The IT investments include $621,000 for IT tools and
infrastructure replacement, $275,000 for network operations and
emergency services, and $280,000 for E-Government initiatives and
conversion of employee official personnel files to an electronic
format.
agency operations
Although funding for agency operations has been held at nearly the
same level for the past 3 years, the RRB is achieving its mission.
During fiscal year 2011, the agency provided benefit services within
the timeframes promised in the RRB Customer Service Plan 99.2 percent
of the time, and maintained benefit payment accuracy rates exceeding 99
percent. Customer satisfaction with RRB services has also been high. In
January 2012, the RRB achieved a score of 81 in a survey of claimants
receiving unemployment and sickness insurance benefits. This was 14
points higher than the Federal government average.
These results have been possible due to the efforts of the RRB's
experienced and dedicated workforce, supported by advanced information
technology. To ensure that the RRB can continue to provide this level
of service in future years, the agency will need sufficient funding to
recruit and train qualified staff to replace 40 percent of our
retirement eligible workforce, sustain our technological
infrastructure, continue with modernization of systems, and uphold
optimal results of processing operations against a constrained
baseline. As rising costs of doing business erode the agency's buying
power each year, it becomes more of a challenge today to fiscally plan
for the out-years to protect current services without undermining the
impact of modernization activities, which are essential to maintaining
service levels in the future.
financial management integrated system
The RRB's fiscal year 2013 budget request includes $3,562,000 for a
major project to migrate from our obsolete legacy financial management
system to the cloud or a shared service provider. While the system
continues to meet our financial processing and reporting requirements,
conversion to a shared service provider hosted solution follows
applicable laws and current Office of Management and Budget guidance
while removing the risk associated with dependence on a system that has
reached the end of its life cycle in 2003.
Advantages of a conversion include compliance with the Financial
Management Lines of Business processes established by the Financial
Systems Integration Office, improved end-user reporting capabilities
that replace manual processes, a user-friendly interface supporting
faster transaction processing, and the transfer of daily system
operations to an outside service provider. The transfer of system
operations relieves the RRB of activities such as supporting the
financial management system application upgrades, configurations,
maintenance and modifications.
other requested funding
The President's proposed budget includes $45 million to fund the
continuing phase-out of vested dual benefits, plus a 2 percent
contingency reserve of $900,000 which ``shall be available proportional
to the amount by which the product of recipients and the average
benefit received exceeds the amount available for payment of vested
dual benefits.'' In addition, the President's proposed budget includes
$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
financial activities with the National Railroad Retirement Investment
Trust (Trust), which was established by the Railroad Retirement and
Survivors' Improvement Act of 2001 (RRSIA) to manage and invest
railroad retirement assets. Pursuant to the RRSIA, the RRB has
transferred a total of $21.276 billion to the Trust. All of these
transfers were made in fiscal years 2002 through 2004. The Trust has
invested the transferred funds, and the results of these investments
are reported to the RRB and posted periodically on the RRB's website.
The net asset value of Trust-managed assets on September 30, 2011, was
approximately $22.1 billion, a decrease of $1.6 billion from the
previous year. As of March 2012, the Trust had transferred
approximately $12.5 billion to the Railroad Retirement Board for
payment of railroad retirement benefits.
In June 2011, 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 addressed the 25-year period 2011-2035, and included
projections of the status of the retirement trust funds under three
employment assumptions. These assumptions indicated that barring a
sudden, unanticipated, large decrease in railroad employment or
substantial investment losses, the railroad retirement system would
experience no cash flow problems for the next 23 years. Even under the
most pessimistic assumption, the cash flow problems would not occur
until the year 2034. The report did not recommend any change in the
rate of tax imposed by current law on employers and employees.
Railroad Unemployment Insurance Account.--The RRB's latest annual
report on the financial status of the railroad unemployment insurance
system was issued in June 2011. The report indicated that even as
maximum daily benefit rates rise 38 percent (from $66 to $91) from 2010
to 2021, experience-based contribution rates are expected to keep the
unemployment insurance system solvent. Due to short-term cash-flow
problems, $46.5 million was borrowed from the Railroad Retirement
Account during fiscal year 2010. The loans were fully repaid by the end
of fiscal year 2011.
Unemployment levels are the single most significant factor
affecting the financial status of the railroad unemployment insurance
system. However, the system's experience-rating provisions, which
adjust contribution rates for changing benefit levels, and its
surcharge trigger for maintaining a minimum balance, help to ensure
financial stability in the event of adverse economic conditions. No
financing changes were recommended at this time by the report.
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.
______

Office of Inspector General
Prepared Statement of Martin J. Dickman, Inspector General
Mr. Chairman and Members of the Subcommittee: My name is Martin J.
Dickman, and I am the Inspector General for the Railroad Retirement
Board. I would like to thank you, Mr. Chairman, and the members of the
Subcommittee for your continued support of the Office of Inspector
General.
budget request
The President's proposed budget for fiscal year 2013 would provide
$8,820,000 to the Office of Inspector General (OIG) to ensure the
continuation of the OIG's independent oversight of the Railroad
Retirement Board (RRB). During fiscal year 2013, the OIG will focus on
areas affecting program performance; the efficiency and effectiveness
of agency operations; and areas of potential fraud, waste and abuse.
operational components
The OIG has three operational components: the immediate Office of
the Inspector General, the Office of Audit (OA), and the Office of
Investigations (OI). The OIG conducts operations from several
locations: the RRB's headquarters in Chicago, Illinois; an
investigative field office in Philadelphia, Pennsylvania; and five
domicile investigative offices located in Virginia, Texas, California,
Florida, and New York. These domicile offices provide more effective
and efficient coordination with other Inspector General offices and
traditional law enforcement agencies, with which the OIG works joint
investigations.
office of audit
The mission of the Office of Audit is to promote economy,
efficiency, and effectiveness in the administration of RRB programs and
detect and prevent fraud and abuse in such programs. To accomplish its
mission, OA conducts financial, performance, and compliance audits and
evaluations of RRB programs. In addition, OA develops the OIG's
response to audit-related requirements and requests for information.
During fiscal year 2013, OA will focus on areas affecting program
performance; the efficiency and effectiveness of agency operations; and
areas of potential fraud, waste, and abuse. OA will continue its
emphasis on long-term systemic problems and solutions, and will address
major issues that affect the RRB's service to rail beneficiaries and
their families. OA has identified four broad areas of potential audit
coverage: Financial Accountability; Railroad Retirement Act & Railroad
Unemployment Insurance Act Benefit Program Operations; Railroad
Medicare Program Operations; and Security, Privacy, and Information
Management. OA must also accomplish the following mandated activities
with its own staff: Audit of the RRB's financial statements pursuant to
the requirements of the Accountability of Tax Dollars Act of 2002 and
evaluation of information security pursuant to the Federal Information
Security Management Act (FISMA).
During fiscal year 2013, OA will complete the audit of the RRB's
fiscal year 2012 financial statements and begin its audit of the
agency's fiscal year 2013 financial statements. OA contracts with a
consulting actuary for technical assistance in auditing the RRB's
``Statement of Social Insurance'', which became basic financial
information effective in fiscal year 2006. In addition to performing
the annual evaluation of information security, OA also conducts audits
of individual computer application systems which are required to
support the annual FISMA evaluation. Our work in this area is targeted
toward the identification and elimination of security deficiencies and
system vulnerabilities, including controls over sensitive personally
identifiable information.
OA undertakes additional projects with the objective of allocating
available audit resources to areas in which they will have the greatest
value. In making that determination, OA considers staff availability,
current trends in management, congressional and Presidential concerns.
office of investigations
The Office of Investigations (OI) focuses its efforts on
identifying, investigating, and presenting cases for prosecution,
throughout the United States, concerning fraud in RRB benefit programs.
OI conducts investigations relating to the fraudulent receipt of RRB
disability, unemployment, sickness, and retirement/survivor benefits.
OI investigates railroad employers and unions when there is an
indication that they have submitted false reports to the RRB. OI also
conducts investigations involving fraudulent claims submitted to the
Railroad Medicare Program. These investigative efforts can result in
criminal convictions, administrative sanctions, civil penalties, and
the recovery of program benefit funds.

OI INVESTIGATIVE RESULTS FOR FISCAL YEAR 2011
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Civil Judgments......................................... 21
Indictments/Informations................................ 60
Convictions............................................. 62
Recoveries/Receivables.................................. \1\ $106,717,4
26
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\1\ This total includes the results of joint investigations with other
agencies.

OI anticipates an ongoing caseload of about 480 investigations in
fiscal year 2013. During fiscal year 2011, OI opened 369 new cases and
closed 234. At present, OI has cases open in 48 States, the District of
Columbia, and Canada with estimated fraud losses of nearly $42 million.
Disability fraud cases represent the largest portion of Ol's total
caseload. These cases involve more complicated schemes and often result
in the recovery of substantial amounts for the RRB's trust funds. They
also require considerable resources such as travel by special agents to
conduct surveillance, numerous witness interviews, and more
sophisticated investigative techniques. Additionally, these fraud
investigations are extremely document-intensive and require forensic
financial analysis. Of particular significance is an ongoing
investigation related to alleged disability fraud in New York. Eleven
individuals have been indicted, and OI agents will likely have to spend
a substantial amount of time traveling for trial preparation in fiscal
year 2013.
During fiscal year 2013, OI will continue to coordinate its efforts
with agency program managers to address vulnerabilities in benefit
programs that allow fraudulent activity to occur and will recommend
changes to ensure program integrity. OI plans to continue proactive
projects to identify fraud matters that are not detected through the
agency's program policing mechanisms.
conclusion
In fiscal year 2013, the OIG will continue to focus its resources
on the review and improvement of RRB operations and will conduct
activities to ensure the integrity of the agency's trust funds. This
office will continue to work with agency officials to ensure the agency
is providing quality service to railroad workers and their families.
The OIG will also aggressively pursue all individuals who engage in
activities to fraudulently receive RRB funds. The OIG will continue to
keep the Subcommittee and other members of Congress informed of any
agency operational problems or deficiencies. The OIG sincerely
appreciates its cooperative relationship with the agency and the
ongoing assistance extended to its staff during the performance of
their audits and investigations. Thank you for your consideration.
______

CORPORATION FOR PUBLIC BROADCASTING
Statement of Patricia Harrison, President and CEO
Mr. Chairman and members of the subcommittee, thank you for
allowing me to submit this testimony on behalf of our country's public
media service--public television and public radio, on-air, online and
in your community.
American public media serves our citizens with quality and trusted
content that educates, informs and inspires. This trusted noncommercial
service is available for free to all Americans of all backgrounds, race
and ethnicities, and to underserved and unserved audiences in rural and
urban communities throughout the country.
We are a system comprising approximately 1,300 locally owned and
operated public radio and television stations connected to communities
across the country. Together, these stations ensure that 99 percent of
the American people have access to quality educational and
informational services that may not otherwise be available to them.
Public media stations work for, and are accountable to, the people in
the communities they serve. That connection is important as stations
acquire national programming and produce local content and services
based on the needs of their respective communities.
By design of the Public Broadcasting Act, the Federal investment in
this service, administered by the Corporation for Public Broadcasting
(CPB), is the foundation on which the public broadcasting system
operates. Over 95 percent of the Federal investment goes to support
public media's service to the American people. Approximately 70 percent
of CPB funding goes directly to local stations, and approximately 19
percent of CPB funding is directed to the production or acquisition of
programming, making CPB the largest single funder of content--for
children's programming like ``Sesame Street'' and ``The Electric
Company''; for public affairs programming like ``PBS NewsHour'',
``Morning Edition'' and ``Frontline''; and for programming like
``Nature'', ``Nova'', ``American Experience'', ``Native American
News'', ``StoryCorps'' and the films of Ken Burns.
CPB also supports the creation of programming for radio,
television, and digital media. The statute ensures diversity in this
programming by requiring CPB to fund independent and minority
producers. CPB fulfills these obligations by funding the Independent
Television Service, the five Minority Consortia in television (which
represent African-American, Latino, Asian American, Native American,
and Pacific Islander producers) and numerous minority stations in
radio.
Stations use CPB funding for local operations and to produce and
acquire programming, which allows them to raise additional operational
funds from corporations, foundations, State and local governments and
from individual contributions, which are the largest source of non-CPB
funding for public media. On average, every Federal dollar invested in
CPB is leveraged by stations to raise $6 locally. This successful
public-private partnership is uniquely entrepreneurial and uniquely
American. Though models vary, funding for other countries' public
broadcasting systems comes almost exclusively from their governments,
from licensing fees or from dedicated taxes. At $1.39 per American, the
cost of our country's service is proportionally small compared to other
developed nations.
And for this investment Americans have a safe place to educate
their children with unmatched noncommercial educational programming
that is proven to prepare children to learn. For this investment,
Americans have access to quality news and public affairs programming
and information that is trusted and treats the audience as citizens,
not consumers. For this investment, Americans can access lifelong
educational programming about science, nature and history that is
otherwise not supported in the commercial marketplace. And for this
investment, Americans have a valuable public service that reflects our
country, contributes to our civil society and is accountable to the
citizens we serve.
cpb
CPB's mission is to strengthen and advance public media's service
to the American people. We are a nonprofit private corporation, and we
serve as the steward of the taxpayer's investment in this service.
Although our funding is distributed through a statutory formula, under
which we can only use 5 percent for administrative expenses, we work
every day to ensure that the taxpayers' money is wisely invested in
stations and programs that contribute to our country and serve our
citizens. Over the past few years, we have instituted policies and
procedures to make us even more accountable and transparent to the
taxpayers who fund us. In this respect, CPB acts as a guardian of the
mission and purposes for which public broadcasting was established.
For the past 3 years, CPB has strategically focused our investments
on the ``Three D's''--Digital, Diversity, and Dialogue. This refers to
our support for innovation on digital platforms, extending public
media's reach and service over multiple platforms; content that is for,
by and about diverse people; and services that foster dialogue and a
deeper engagement between the American people and the public service
media organizations that serve them.
One example of a CPB investment that embodies each of the Three D's
is our education investment. In the words of our statute, ``[I]t is in
the public interest to encourage . . . the use of [public] media for
instructional, educational, and cultural purposes.'' For over 40 years,
public broadcasting stations have made a robust and vital contribution
to education, with proven results in improving reading and math skills
for the Nation's youngest children, particularly those furthest behind.
We have built on our success in early education and launched a new
national initiative to help communities tackle the high school dropout
crisis called, ``American Graduate: Let's Make It Happen.''
Every year, approximately 1 million kids drop out of high school, a
tragedy for these kids and a travesty for our country. The dropout
epidemic is costing our Nation more than $100 billion annually in lost
wages and taxes, plus increased social costs due to crime and
healthcare. American Graduate is a significant public media effort to
help improve our Nation's high school graduation rates and, through
this initiative, public media, both nationally and locally, is bringing
our collective resources to bear to address the dropout epidemic.
Sixty-eight public media stations in key dropout epicenters across
30 States, Puerto Rico and the District of Columbia are working
directly with students, parents, teachers, mentors, volunteers and
business leaders to lower the dropout rate in their communities by
communicating the need and highlighting solutions. Stations are using
broadcast, web and mobile platforms to create content that helps to
tell this story in a compelling way. Some of the activities include:
producing public service announcements to improve understanding about
dropout statistics and their implications, hosting teacher town hall
meetings and community forums on strategies to decrease dropout rates
in their communities, and local news and public affairs reporting to
deepen the understanding of the scope of the problem and the unique
community challenges and solutions.
This is a united effort across the country and across public media.
In addition to local action by stations in their communities, there has
been significant work done by national producers to increase
understanding of the crisis, including work by ``PBS NewsHour'',
``Tavis Smiley'', ``StoryCorps'', NPR, ``Roadtrip Nation'', ``Ideas in
Action'' with Jim Glassman and others.
Through strategic investments, CPB has also fueled innovation in
the system. In New York and Florida, stations are coming together to
consolidate engineering and master control operations, which allows
them to save money, operate more efficiently and spend more time and
resources on content and services for their communities. Stations
throughout the country are looking to replicate this model, which could
save stations millions over several years.
CPB has invested in seven regional local journalism centers, which
are clusters of public television and radio stations who have come
together to increase the quality and capacity of their local reporting
on critically important topics to their communities and regions.
Whether it is border issues in the Southwest, agribusiness issues in
the Heartland, economic revitalization in upstate New York or education
issues in the South, these station collaborations are creating and
sharing original content that is vital to the communities they serve.
The focus on diversity is deeply embedded in CPB's culture and
increased service to diverse audiences is a consideration in virtually
every investment CPB makes. In 2009, we created the Diversity and
Innovation fund, which is dedicated to supporting the creation of
content of interest and service to diverse communities. The D&I fund
supports documentaries such as the award-winning ``Freedom Riders'' and
``Slavery By Another Name'', expanded news and public affairs
programming for diverse communities, translation services for news and
election programming, a new radio service in Los Angeles and the full-
time multicast World Channel, designed to attract a diverse audience.
cpb's request for appropriations
Public media stations continue to evolve, both operationally and in
the ways they serve their communities. Stations are committed to
reaching viewers and listeners on whatever platform they use--from
smart phones to tablets to radios to television sets. While stations
can and will continue to adapt and operate in the digital age, they
cannot provide service on evolving platforms without sufficient
support. As the Federal Communications Commission's National Broadband
Plan noted, ``Today, public media is at a crossroads . . . [it] must
continue expanding beyond its original broadcast-based mission to form
the core of a broader new public media network that better serves the
new multi-platform information needs of America. To achieve these
important expansions, public media will require additional funding.''
CPB Base Appropriation (Fiscal Year 2015).--CPB requests a $445
million advance appropriation for fiscal year 2015, to be spent in
accordance with the Public Broadcasting Act's funding formula. The 2-
year advance appropriation for public broadcasting, in place since
1976, is the most important part of the ``firewall'' that Congress
constructed between Federal funding and the programs that appear on
public television and radio. President Gerald Ford, who initially
proposed a 5-year advance appropriation for CPB, said it best when he
said that advance funding ``is a constructive approach to the sensitive
relationship between Federal funding and freedom of expression. It
would eliminate the scrutiny of programming that could be associated
with the normal budgetary and appropriations processes of the
Government.''
Our fiscal year 2015 request, which is the same level as the
administration's request for CPB, balances the fiscal reality facing
our Nation with the stark fact that stations are struggling to provide
service to their communities in the face of shrinking non-Federal
revenues--a $380 million, or 16 percent, drop between fiscal year 2008
and 2010 alone. Even with these challenges, public broadcasting
contributes to American society in many ways that are worthy of greater
Federal investment. In fiscal year 2015, CPB will continue to support a
range of programming and initiatives through which stations provide a
valuable and trusted service to millions of Americans.
Ready To Learn (Fiscal Year 2013).--CPB requests that the U.S.
Department of Education's Ready To Learn (RTL) program be funded at
$27.3 million, the same level as fiscal year 2012. Mr. Chairman,
education is at the heart of public media. RTL is a partnership between
the Department, CPB, PBS and local public television stations that
leverages the power of digital television technology, the Internet,
gaming platforms and other media to help millions of young children
learn the reading and math skills they need to succeed in school. The
partnership's work over the past few years has demonstrably increased
reading scores particularly among low-income children and has erased
the performance gap between children from low-income households and
their more affluent peers. An appropriation of $27.3 million in fiscal
year 2013 will enable RTL to develop tools to improve children's
performance in math as well as reading and bring on-the-ground,
station-convened early learning activities to more communities.
Mr. Chairman, all told, the Federal contribution to public media
through CPB amounts to $1.39 per American per year and the returns for
taxpayers are exponential. Whether in-depth news and public affairs
programming on the local, State, national and international level;
unmatched, commercial-free children's programming; formal and informal
educational instruction for all ages; or inspiring arts and cultural
content; we in America's public media system are working every day to
serve our citizens.
In last year's final appropriations legislation, CPB was instructed
to report to Congress about alternative sources of funding for public
media. We are actively looking at that question and will report back to
the subcommittee prior to our deadline on June 20.
Mr. Chairman and members of the subcommittee, thank you again for
allowing CPB to submit this testimony. On behalf of the public
broadcasting community, including the stations in your States and those
they serve, we sincerely appreciate your support.
NONDEPARTMENTAL WITNESSES
Prepared Statement of the Alzheimer's Association
The Alzheimer's Association appreciates the opportunity to comment
on the fiscal year 2013 appropriations for Alzheimer's disease
research, education, outreach and support at the U.S. Department of
Health and Human Services.
Founded in 1980, the Alzheimer's Association is the world's leading
voluntary health organization in Alzheimer's care, support and
research. Our mission is to eliminate Alzheimer's disease and other
dementias through the advancement of research; to provide and enhance
care and support for all affected; and to reduce the risk of dementia
through the promotion of brain health. As the largest, private
nonprofit funder of Alzheimer's research, the Association is committed
to accelerating progress of new treatments, preventions and ultimately,
a cure. Through our partnerships and funded projects, we have been part
of every major research advancement over the past 30 years. Today, the
Association works on a global level to enhance care and support for all
those affected by Alzheimer's and reaches millions of people affected
by Alzheimer's, and their caregivers, through our national office and
more than 70 local chapters and service areas.
Alzheimer's Impact on the American People and Economy
In addition to the human suffering caused by the disease,
Alzheimer's is creating an enormous strain on the healthcare system,
families and the Federal budget. Alzheimer's is a progressive brain
disorder that damages and eventually destroys brain cells, leading to
loss of memory, thinking and other brain functions. Ultimately,
Alzheimer's is fatal. Currently, Alzheimer's is the sixth leading cause
of death in the United States and the only 1 of the top 10 without a
means to prevent, cure or slow its progression. Today, there are 5.4
million Americans living with Alzheimer's--5.2 million aged 65 and
over, and 200,000 under the age of 65.\1\ Of Americans aged 65 and
over, 1 in 8 has Alzheimer's, and nearly half of people aged 85 and
older have the disease. While deaths from other major diseases,
including heart disease, stroke and HIV continue to experience
significant declines, those from Alzheimer's have increased 66 percent
between 2000 and 2008.
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\1\ Alzheimer's Association, 2012 Alzheimer's Disease Facts and
Figures, Alzheimer's & Dementia, Volume 8, Issue 2.
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Although Alzheimer's is not normal aging, age is the biggest risk
factor, which means the graying of America equates to the bankrupting
of America. With the first of the baby boomer generation now turning
65, the U.S. population aged 65 and over is expected to double, meaning
there will be more and more Americans living with Alzheimer's--as many
as 16 million by 2050, when there will be nearly 1 million new cases
each year. Caring for people with Alzheimer's will cost all payers--
Medicare, Medicaid, individuals, private insurance, and HMOs--$20
trillion over the next 40 years. In 2012, America will spend an
estimated $200 billion in direct costs caring for those with
Alzheimer's, including $140 billion in costs to Medicare and Medicaid.
Average per person Medicare costs for those with Alzheimer's and other
dementias are three times higher than those without these conditions.
Medicaid spending is 19 times higher. Moreover, Alzheimer's makes
treating other diseases more expensive, as most individuals with
Alzheimer's have one or more co-morbidity that complicate the
management of the condition(s) and increase costs. For example, a
senior with diabetes and Alzheimer's costs Medicare 81 percent more
than a senior who only has diabetes. Nearly 30 percent of people with
Alzheimer's or another dementia who have Medicare also have Medicaid
coverage, compared with 11 percent of individuals without dementia or
Alzheimer's. Alzheimer's disease is also extremely prevalent among
dual-eligibles in nursing homes, where 64 percent of residents live
with the disease. Unless something is done, the costs of Alzheimer's in
2050 are estimated to total $1.1 trillion (in today's dollars).\2\
Costs to Medicare and Medicaid will increase nearly 500 percent and
there will be a 400 percent increase in out-of-pocket costs.
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\2\ Alzheimer's Association, Changing the Trajectory of Alzheimer's
Disease: A National Imperative, 2010.
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With Alzheimer's, it is not just those with the disease who
suffer--it is also their caregivers and families. In 2011, 15.2 million
family members and friends provided unpaid care valued at over $210
billion. Caring for a person with Alzheimer's takes longer, lasts
longer, is more personal and intrusive, and takes a heavy toll on the
health of the caregivers themselves. More than 60 percent of
Alzheimer's and dementia caregivers rate the emotional stress of
caregiving as high or very high; with one-third reporting symptoms of
depression. Caregiving may also have a negative impact on health,
employment, income and family finances. Due to the physical and
emotional toll of caregiving on their own health, Alzheimer's and
dementia caregivers had $8.7 billion in additional healthcare costs in
2011.
Changing the Trajectory of Alzheimer's
Until recently, there was no strategy on how to address this
looming crisis. In 2010, thanks to bipartisan support in Congress, the
National Alzheimer's Project Act (NAPA) (Public Law 111-375) passed
unanimously, requiring the creation of an annually updated strategic
National Alzheimer's Plan (Plan) to help those with the disease and
their families today and to change the trajectory of the disease for
the future. The Plan is required to include an evaluation of all
federally funded efforts in Alzheimer's research, care and services--
along with their outcomes. In addition, the Plan must outline priority
actions to reduce the financial impact of Alzheimer's on Federal
programs and on families; improve health outcomes for all Americans
living with Alzheimer's; and improve the prevention, diagnosis,
treatment, care, institutional-, home-, and community-based Alzheimer's
programs for individuals with Alzheimer's and their caregivers. NAPA
will allow Congress to assess whether the Nation is meeting the
challenges of this disease for families, communities and the economy.
Through its annual review process, NAPA will, for the first time,
enable Congress and the American people to answer this simple question:
Did we make satisfactory progress this past year in the fight against
Alzheimer's?
As mandated by NAPA, the Secretary of Health and Human Services, in
collaboration with the Advisory Council on Alzheimer's Research, Care,
and Services, is developing the first-ever Plan to be transmitted to
Congress later this Spring. The Advisory Council, made of both Federal
members and expert non-Federal members, is an integral part of the
planning process as it advises the Secretary in developing and
evaluating the annual Plan, makes recommendations to the Secretary and
Congress, and assists in coordinating the work of Federal agencies
involved in Alzheimer's research, care, and services. In advance of the
first Plan, the President's fiscal year 2013 budget request included
$80 million for Alzheimer's research and $20 million for education,
outreach and support. These funds are a critically needed down payment
for needed research and services for Alzheimer's patients and their
families.
A disease-modifying or preventative therapy would not only save
millions of lives but would save billions of dollars in healthcare
costs. Specifically, if a treatment became available in 2015 that
delayed onset of Alzheimer's for 5 years (a treatment similar to anti-
cholesterol drugs), savings would be seen almost immediately, with
Medicare and Medicaid spending reduced by $42 billion in 2020. Today,
despite the remarkable advances in Alzheimer's research, there are
growing concerns that we still lack effective treatments that will
slow, stop, or cure the disease and that the pace of progress in
understanding the disease and developing breakthrough discoveries is
much too slow to make any impact on the growing crisis before us.
Currently, for every $28,000 Medicare and Medicaid spends caring for
individuals with Alzheimer's, the National Institutes of Health (NIH)
spends only $100 on Alzheimer's research. Scientists fundamentally
believe that we have the ideas, the technology and the will to develop
new Alzheimer's interventions, but that progress depends on a
prioritized scientific agenda and on the resources necessary to carry
out the scientific strategy for both discovery and translation for
therapeutic development. The Alzheimer's Association urges Congress to
support the President's budget request of $80 million for Alzheimer's
research at the National Institutes of Health in fiscal year 2013, and
the priority research recommendations included in the National
Alzheimer's Plan required under Public Law 111-375.
For too many individuals with Alzheimer's and their families, the
system has failed them, and today we are unnecessarily losing the
battle against this devastating disease. Despite the fact that an early
and documented formal diagnosis allows individuals to participate in
their own care planning, manage other chronic conditions, participate
in clinical trials, and ultimately alleviate the burden on themselves
and their loved ones, as many as half of the 5.4 million Americans with
Alzheimer's have never received a formal diagnosis. Unless we invest in
an effective dementia-capable system that finds new solutions to
providing high quality care, provides community support services and
programs, and addresses Alzheimer's health disparities, Alzheimer's
will break the healthcare system. For example, people with Alzheimer's
and other dementias have more than three times as many hospital stays
as other older people. Furthermore, one out of seven individuals with
Alzheimer's or another dementia lives alone and up to half do not have
an identifiable caregiver. These individuals are more likely to need
emergency medical services because of self-neglect or injury, and are
found to be placed into nursing homes earlier, on average, than others
with dementia. It has been estimated that delaying long-term care by 1
month for each person in the United States age 65 or older could save
$60 billion a year. Ultimately, supporting individuals with Alzheimer's
disease and their families and caregivers requires giving them the
tools they need to plan for the future and ensuring the best quality of
life for individuals and families impacted by the disease. The
Alzheimer's Association urges Congress to support the President's
budget request of $20 million for Alzheimer's education, outreach and
support at the Administration on Aging (AoA) in fiscal year 2013, and
the priorities included in the National Alzheimer's Plan required under
Public Law 111-375.
Additional Alzheimer's programs:
National Alzheimer's Call Center.--The National Alzheimer's Call
Center, funded by the AoA, provides 24/7, year-round telephone support,
crisis counseling, care consultation, and information and referral
services in 140 languages for persons with Alzheimer's, their family
members and informal caregivers. Trained professional staff and
master's-level mental health professionals are available at all times.
In the 12 month period ending July 31, 2011, the Call Center handled
over 300,000 calls through its national and local partners, and its
online message board received over 13 million page views and over
100,000 individual postings. The Alzheimer's Association urges Congress
to support $1.3 million for the National Alzheimer's Call Center.
Healthy Brain Initiative (HBI).--The Centers for Disease Control
and Prevention's (CDC) HBI program works to educate the public, the
public health community and health professionals about Alzheimer's as a
public health issue. Although there are currently no treatments to
delay or stop the deterioration of brain cells caused by Alzheimer's,
evidence suggests that preventing or controlling cardiovascular risk
factors may benefit brain health. In light of the dramatic aging of the
population, scientific advancements in risk behaviors, and the growing
awareness of the significant health, social and economic burdens
associated with cognitive decline, the Federal commitment to a public
health response to this challenge is imperative. The Alzheimer's
Association urges Congress to support $2.2 million for the Healthy
Brain Initiative.
Alzheimer's Disease Supportive Services Program (ADSSP).--The ADSSP
at the AoA supports family caregivers who provide countless hours of
unpaid care, thereby enabling their family members with Alzheimer's and
dementia to continue living in the community. The program develops
coordinated, responsive and innovative community-based support service
systems for individuals and families affected by Alzheimer's. The
Alzheimer's Association urges Congress to support $11.441 million for
the Alzheimer's Disease Supportive Services Program.
Conclusion
The Association appreciates the steadfast support of the
Subcommittee and its priority setting activities. We look forward to
continuing to work with Congress in order to address the Alzheimer's
crisis. We ask Congress to address Alzheimer's with the same bipartisan
collaboration demonstrated in the passage of the National Alzheimer's
Project Act (Public Law 111-375) and with a commitment equal to the
scale of the crisis.
______

Prepared Statement of the Association of American Cancer Institutes
The Association of American Cancer Institutes (AACI), representing
95 of the Nation's premier academic and free-standing cancer centers,
appreciates the opportunity to submit this statement for consideration
by the United States Senate Subcommittee on Labor, Health and Human
Services, Education and Related Agencies, Committee on Appropriations.
AACI appreciates the long-standing commitment of the President,
Congress and the Subcommittee to ensuring quality care for cancer
patients, as well as for providing researchers with the resources that
they need to develop better cancer treatments and, ultimately, to cure
this disease.
President Obama's fiscal year 2013 budget calls for maintaining the
fiscal year 2012 funding levels for the National Institutes of Health
(NIH) and the National Cancer Institute (NCI) ($30.9 billion and $5
billion, respectively). AACI joins with our colleagues in the
biomedical research community in recommending that the Subcommittee
recognize NIH as a critical national priority by providing at least $32
billion in funding in the fiscal year 2013 Labor-HHS-Education
appropriations bill, including an equivalent percentage increase in
funding for NCI. This funding level represents the minimum investment
necessary to avoid further loss of promising research.
AACI cancer centers are at the front line in the national effort to
eradicate cancer. The cancer centers that AACI represents house more
than 20,000 scientific, clinical and public health investigators who
work collaboratively to translate promising research findings into new
approaches to prevent and treat cancer. But making progress against
cancer is complex. It is more a marathon than a sprint, and it takes
time for the scientific discovery process to yield fruit. However, the
pace of discovery and translation of novel basic research to new
therapies could be faster if researchers could count on a significant
and predictable investment in Federal cancer funding.
AACI and its members are keenly aware of the country's fiscal
obstacles. The vast majority of our cancer centers exist within
universities that already face drastic budget reductions. Furthermore,
because of the reduced funding pool for meritorious grant applications,
many of our senior and most promising young investigators are now
without NCI funding and require significant bridge funding from private
sources. In recent years, however, it has become more challenging to
raise philanthropic and other external funds. As a result, we continue
to be highly dependent on Federal cancer center grants.
The Obama administration has estimated that if the NIH budget stays
flat in fiscal year 2013, as it has proposed, the agency would be able
to fund 9,415 new grants. However, even with flat funding relatively
few people who apply for grants from NIH can expect to receive them.
Over the past 9 years NIH has lost about 20 percent of its purchasing
power for medical research due to inflation, and only about 1 in 7
grant applications are approved for funding, the lowest rate in NIH
history. NIH's ability to sustain current research capacity and
encourage promising new areas of science has been significantly
compromised by stagnant funding.
This situation will be even more acute if an 8 percent budget cut
being considered as part of the Budget Control Act of 2011, takes
effect in January. The cut is even deeper than it appears because the
agency's fiscal year starts October 1, 3 months into the fiscal year.
As a result, NIH would be able to fund 2,300 fewer grants in fiscal
year 2013, according to NIH Director Francis Collins.
Impact Beyond the Lab
The negative effects of diminished biomedical research funding
reach beyond the lab and into local communities, as chronicled this
past winter by a number of AACI cancer center directors who were
featured in newspaper editorials that highlighted the impact of NIH and
NCI funding on people and local economies in their individual States.
For example, the leaders of the UC San Diego Moores Cancer Center
and the San Diego-based Sanford Burnham Medical Research Institute
noted that NIH funding brought $1.3 billion to their local economy in
2010. In San Antonio, the director of the Cancer Therapy & Research
Center at the University of Texas Health Science Center noted that his
institution received more than $30 million in cancer-related grants and
clinical trials.
AACI Past President Michael A. Caligiuri, MD, director of the Ohio
State University Comprehensive Cancer Center and chief executive
officer of the Arthur G. James Cancer Hospital and Richard J. Solove
Research Institute, put it succinctly in an editorial in his hometown
paper, The Columbus Dispatch: ``The work we do at Ohio State affects
the entire continuum of cancer acre. And cancer research done at Ohio
State and other organizations supports high-quality jobs in Ohio
communities and allows our residents to benefit from the advances
happening right here.''
An AACI-commissioned economic analysis of proposals for NIH's
fiscal year 2011 budget estimated that a ``conservative'' 0.8 percent
cut in the NIH's annual budget would result in about 4,000 jobs lost
nationally. Looking specifically at NCI's budget, the Nation's research
institutions, which house AACI's member cancer centers, received an
estimated $3.71 billion from NCI to conduct cancer research in fiscal
year 2010; more than two-thirds of NCI's total budget. At the time that
AACI's analysis was published, an ``aggressive'' budget reduction of
5.3 percent was under consideration and would have led to more than
4,200 jobs lost nationwide and an economic loss of more than $564
million.
Other recent studies have also concluded that Federal support for
medical research is a major determinant in the economic health of
communities across the country. In one such report, United for Medical
Research, a coalition of leading research institutions, patient and
health advocates and private industry, estimated that NIH funding
generated the greatest number of jobs in California (63,196),
Massachusetts (34,598), New York (33,193), Texas (25,878) and Maryland
(24,557) and also supported more than 10,000 jobs each in Pennsylvania,
North Carolina, Washington, Illinois, Ohio, Florida, Michigan and
Georgia. Fifty-three AACI cancer centers are located in those 13
States.
Cancer centers are already challenged to provide infrastructure
resources necessary to support funded researchers, and cuts in Federal
cancer center grants will limit our members' ability to provide well-
functioning shared resources to investigators who depend on them to
complete their research. For most academic cancer centers, the majority
of NCI grant funds are used to sustain shared resources that are
essential to basic, translational, clinical and population cancer
research, or to provide matching dollars which allow departments to
recruit new cancer researchers to a university and support them until
they receive their first grants.
Independent investigator research is a particularly valuable
resource, especially in genomics and molecular epidemiology. Such
research depends on state-of-the-art shared resources like tissue
processing and banking, DNA sequencing, microRNA platforms, proteomics,
biostatistics and biomedical informatics. This infrastructure is
expensive and it is not clear where cancer centers would acquire
alternative funding if NCI grants for these efforts were reduced.
Cancer Research: Improving America's Health
The broad portfolio of research supported by NIH and NCI is
essential for improving our basic understanding of diseases and it has
paid off handsomely in terms of improving Americans' health.
Death rates from all cancers combined for men, women, and children
in the United States continued to decline between 2004 and 2008, the
latest year for which we have complete analysis. Age-adjusted mortality
rates for 11 of the 18 most common cancers among men and for 14 of the
16 most common cancers in women have declined. The overall rate of new
cancer diagnoses among both men and women also declined over similar
periods, although for women the decline leveled off from 2006-2008
(National Cancer Institute, 2012 Annual Report to the Nation on the
Status of Cancer). A broader data set shows that cancer death rates
have dropped 11.4 percent among women and 19.2 percent among men over
the past 15 years, due in large part to better detection and more
effective treatments.
Despite that success, cancer remains the second leading cause of
death in the United States, exceeded only by heart disease. In 2007,
more than 562,000 people died of cancer, and more than 1.45 million
people had a diagnosis of cancer (Centers for Disease Control and
Prevention, United States Cancer Statistics: 1999-2007 Cancer Incidence
and Mortality Data).
The network of cancer centers represented by AACI continues the
fight against cancer by conducting the highest-quality cancer research
in the world and provides exceptional patient care. In 2010, $3.9
billion from NCI was awarded extramurally to research institutions,
including the AACI's member cancer centers. This represents 77 percent
of NCI's total budget (U.S. Department of Health and Human Services,
National Institutes of Health, National Cancer Institute 2010 Fact
Book). Because these centers are networked nationally, opportunities
for collaborations are many--assuring wise and non-duplicative
investment of scarce Federal dollars.
Conclusion
The National Institutes of Health estimates overall costs of cancer
in 2010 at $263.8 billion: $102.8 billion for direct medical costs
(total of all health expenditures); $20.9 billion for indirect
morbidity costs (cost of lost productivity due to illness); and $140.1
billion for indirect mortality costs (cost of lost productivity due to
premature death) (American Cancer Society, 2010 Facts & Figures).
In the face of that economic burden, the Nation's financial support
of NIH and NCI has paid dividends by wiping out diseases that killed
our grandparents. Those investments have led us to the brink of new
discoveries in deadly and debilitating illnesses, cancer perhaps
foremost among them. The AACI cancer center network is unsurpassed in
its pursuit of excellence, and places the highest priority on
delivering superior cancer care to all Americans, including novel
treatments and clinical trials. It is through the power of
collaborative innovation that we will continue to move toward a future
without cancer, and Federal research funding is essential to achieving
our goals.
______

Prepared Statement of the American Association of Colleges of Nursing
As the national voice for baccalaureate and graduate nursing
education, the American Association of Colleges of Nursing (AACN)
represents 700 schools of nursing that educate over 360,000 students
and employ more than 16,000 full-time faculty members. Collectively,
these institutions produce approximately half of our Nation's
Registered Nurses (RNs) and all nurse faculty and researchers. AACN
requests that nursing education, research, and practice are strongly
supported in fiscal year 2013 through a continued investment in the
Nursing Workforce Development programs (authorized under Title VIII of
the Public Health Service Act [42 U.S.C. 296 et seq.]), the National
Institute of Nursing Research (NINR), and the Nurse-Managed Health
Clinics (NMHCs) (Title III of the Public Health Service Act), so that
our Nation's nurses will be prepared to care for the growing number of
patients requiring a complex range of healthcare services.
job growth in the nursing workforce
The demand for nurses is greater than previously anticipated. In
February of this year, the Bureau of Labor Statistics (BLS) released
their publication Employment Projections for 2010-2020, which projects
significant growth in the nursing workforce from 2.74 million in 2010
to 3.45 million in 2020. This upsurge in demand translates to 712,000
nurses, or an increase of 26 percent. The BLS further projects the need
for 495,500 additional nurses to replace those soon to retire, bringing
the total number of job openings for nurses due to growth and
replacements to 1.2 million by 2020.
The aging of the nursing workforce and America's patients
underscores this alarming projection. According to the 2008 National
Sample Survey of Registered Nurses, of the 2.6 million RNs currently
practicing in America, over 1 million are age 50 or older, and of these
more than 275,000 nurses are over the age of 60. As this large segment
of the workforce begins to retire, the Nation will soon face a
significant deficit in the number of experienced nurses available to
provide services. Concurrent with the aging of the nursing workforce is
the aging of America's baby boomer population. It is estimated that
over 80 million baby boomers reached age 65 in 2011. As this population
transitions into the Nation's oldest generation, these citizens will
continue to require more primary care services related to chronic
illness treatment, medication management, and patient education. A
significant investment must be made in the education of new nurses to
provide the Nation with the nursing services it requires.
title viii nursing workforce development programs
For nearly five decades, the Nursing Workforce Development
programs, authorized under Title VIII of the Public Health Service Act,
have helped build the supply and distribution of qualified nurses to
meet our Nation's healthcare needs. Between fiscal year 2005 and 2010
alone, the Title VIII programs supported over 400,000 nurses and
nursing students as well as numerous academic nursing institutions and
healthcare facilities. The Title VIII programs bolster nursing
education at all levels, from entry-level preparation through graduate
study, and provide support for institutions that educate nurses for
practice in rural and medically underserved communities. Today, the
Title VIII programs are essential to ensure the demand for nursing care
is met by supporting future practicing nurses and the faculty who
educate them.
Given the projected demand for RNs, nursing schools are looking to
admit more students into their programs. However, faculty vacancies
have repeatedly been cited as a fundamental obstacle to maximizing
nursing school enrollment. Data from AACN's 2011-2012 enrollment and
graduations survey show that nursing schools were forced to turn away
75,587 qualified applications from entry-level baccalaureate and
graduate nursing programs in 2011 due primarily to faculty vacancies.
To counter this disparity, the Title VIII Nurse Faculty Loan Program
aids in increasing nursing school enrollment capacity by supporting
students pursuing graduate education, provided they serve as faculty
for 4 years after graduation. In fiscal year 2010, the Title VIII Nurse
Faculty Loan Program supported 271 faculty members who graduated and
went on to teach in our Nation's nursing schools. Yet this only fills a
small portion of the nearly 1,800 vacant faculty positions reported by
AACN member schools in academic year 2011-2012.
The Title VIII programs also increase the number of practicing
nurses entering the pipeline and the placement of these nurses into
medically underserved areas. AACN's Title VIII Student Recipient
Survey, which gathers information annually about Title VIII funding and
outcomes related to nursing education and career trajectories, provides
evidence to the effectiveness of these programs in recruiting more
students to the nursing profession and more importantly, practice in
rural and underserved areas. The 2011-2012 survey, which included
responses from over 1,600 students, revealed that 52 percent of
respondents reported that Title VIII funding affected their decision to
enter nursing school, and that practicing in a rural or underserved
community was in the top five career plans after graduation. In fiscal
year 2011, the Title VIII Nursing Education Loan Repayment Program
committed to supporting 1,304 nurses working in these facilities. In
addition, the Advanced Education Nursing Traineeship Program graduated
7,744 nursing students during the 2010-2011 academic cycle, of which
7,548 (97 percent) went on to practice in medically underserved areas.
Moreover, personal testimony of several survey respondents revealed
that many Title VIII recipients intend to practice in the community in
which they were educated, a direct State investment.
Additionally, 68 percent of respondents stated that Title VIII
funding allowed them to attend school full-time, as these loan and
scholarship programs alleviated the financial burden that obligates
many students to complete their education on a part-time basis. The
Title VIII programs decrease the length of time needed to obtain their
education, thus helping to ensure that students enter the workforce
without delay. These efforts directly align with recommendations in the
Institute of Medicine's landmark report ``Future of Nursing: Leading
Change, Advancing Health'' which state, ``Nurses should achieve higher
levels of education and training through an improved education system
that promotes seamless academic progression.'' Financial support from
Title VIII programs ensure that more nurses are efficiently integrated
into the workforce.
AACN respectfully requests $251 million for the Nursing Workforce
Development programs authorized under Title VIII of the Public Health
Service Act in fiscal year 2013.
national institute of nursing research: advancing nursing science
The healthcare community is increasingly concerned with
investigating methods to improve the delivery of high-quality care in a
financially sustainable manner. As one of the 27 Institutes and Centers
at the National Institutes of Health (NIH), the NINR is dedicated to
promoting this endeavor through research initiatives aimed at reducing
disease prevalence and improving health outcomes. While other health-
related research is aimed at curing disease, nurse-researchers at NINR
focus on the prevention of illnesses that threaten to exacerbate an
already over-burdened healthcare system. More specifically, NINR funded
research investigates methodologies that improve chronic illness
management, communicable disease prevention, pain management, and care-
giver support.
Studies conducted at NINR address health and wellness across the
entire lifespan. Reducing rates of infant prematurity, controlling
rates of high-blood pressure among adults, and evaluating transitional
care models to improve outcomes of the elderly represent the vast array
of population-specific NINR research initiatives. Additionally, NINR
seeks to improve understanding of the processes underlying palliative
care efforts to develop patient-centered care delivery models.
NINR allocates a generous 6 percent of its overall budget to the
education and training of nurse researchers, many of whom dually serve
as nurse faculty within our Nation's nursing schools. As researchers,
these nurses work to strengthen the foundation of evidence-based
nursing practice. As educators, they help to fulfill the need for nurse
faculty and teach current, evidence-based practice that is consistent
with changing healthcare needs.
For NINR to adequately continue and further its mission, the
institute must continue to receive adequate funding. Cuts in funding
have impeded the institute from supporting larger comprehensive studies
needed to advance nursing science and improve the quality of patient
care.
AACN respectfully requests $150 million for the NINR in fiscal year
2013. This level of funding is on par with the Ad Hoc Group for Medical
Research's $32 billion request for the total NIH budget in fiscal year
2013.
nurse-managed health clinics: expanding access to care
Managed by Advanced Practice Registered Nurses and staffed by an
interdisciplinary team, NMHCs provide necessary primary care services
to medically underserved communities. Often times, nurse-managed health
clinics and nurse practitioners are the sole providers for primary care
for these areas. NMHCs serve as critical access points to keep patients
out of the emergency room, thus saving the healthcare system millions
of dollars annually.
NMHCs provide care to vulnerable populations in a host of regions
of the country, including rural communities, Native American
reservations, senior citizen centers, elementary schools, and urban
housing developments. These communities are the most susceptible to
developing chronic illnesses that create heavy financial burden on
patients and the healthcare system. NMHCs aim to reduce disease and
create healthier communities through improved patient education and
health practices. NMHCs provide primary care, health promotion, and
disease prevention to individuals with limited access to care,
regardless of their ability to pay. These vulnerable individuals who
are often plagued with highest rates of detrimental chronic disease
rely on the services provided at these clinics, which help to target
early screening and risk reduction. These services include physical
exams, cardiovascular checks, diabetes and osteoporosis screenings,
smoking cessation programs, immunizations, and other additional
services.
Often associated with a school, college, university, department of
nursing, federally qualified health center, or independent nonprofit
healthcare agency, NMHCs also serve as clinical education training
sites for students of nursing, medicine, physical therapy, social work,
and ancillary healthcare services. According to AACN, the lack of
clinical training sites is often cited as a top reason for turning away
qualified applications in nursing programs.
AACN respectfully requests $20 million for the Nurse-Managed Health
Clinics in fiscal year 2013.
conclusion
AACN recognizes that the Subcommittee and Congress face difficult
decisions regarding appropriations for fiscal year 2013. AACN
respectfully requests Congress to continue a robust investment in the
health of our Nation by providing $251 million for the Title VIII
Nursing Workforce Development programs, $150 million for the National
Institute of Nursing Research, and $20 million for Nurse-Managed Health
Clinics in fiscal year 2013. These programs directly advance the
nursing profession in the areas of education, research, and practice,
to meet our Nation's calling for a more highly skilled nursing
workforce. A strong investment in our Nation's nurses is a strong
investment in the future of America's health.
______

Prepared Statement of the American Association of Colleges of
Osteopathic Medicine
On behalf of the American Association of Colleges of Osteopathic
Medicine (AACOM), I am pleased to submit this testimony in support of
increased funding in fiscal year 2013 for programs at the Health
Resources Services Administration (HRSA), the National Institutes of
Health (NIH), and the Agency for Healthcare Research and Quality
(AHRQ). AACOM represents the administrations, faculty, and students of
the Nation's 26 colleges of osteopathic medicine at 34 locations in 25
States. Today, more than 20,000 students are enrolled in osteopathic
medical schools. Nearly 1 in 5 U.S. medical students is training to be
an osteopathic physician.
Title VII
The health professions education programs, authorized under Title
VII of the Public Health Service Act and administered through HRSA,
support the training and education of health practitioners to enhance
the supply, diversity, and distribution of the healthcare workforce,
acting as an essential part of the healthcare safety net and filling
the gaps in the supply of health professionals not met by traditional
market forces. Title VII and Title VIII nurse education programs are
the only Federal programs designed to train clinicians in
interdisciplinary settings to meet the needs of special and underserved
populations, as well as increase minority representation in the
healthcare workforce.
According to HRSA, an additional 33,000 health practitioners are
needed to alleviate existing health professional shortages. Combined
with faculty shortages across health professions disciplines, racial
and ethnic disparities in healthcare, a growing, aging population and
the anticipated demand for access to care, these needs strain an
already fragile healthcare system.
While AACOM appreciates the investments that have been made in
these programs, we recommend increasing funding to $247.5 million for
Title VII. We strongly support investment in the following programs in
order to address the primary care workforce shortage: Primary Care
Training and Enhancement (PCTE) Program at $58 million, the Health
Careers Opportunity Program (HCOP) at $14.9 million, the Centers of
Excellence (COE) at $22.9 million, the Geriatric Education Centers
(GECs) at $30.6 million and the Area Health Education Centers (AHECs)
at $33.142 million. Strengthening the workforce has been recognized as
a national priority, and the investment in these programs recommended
by AACOM will help meet the demand for a well trained, diverse
workforce facing this country.
Teaching Health Centers Graduate Medical Education Program
The Teaching Health Center Graduate Medical Education (THCGME)
Program is the first of its kind to shift GME training to community-
based care settings that emphasize primary care and prevention. It is
uniquely positioned to provide much needed primary care training in
underserved populations. However, because the program is the first of
its kind, most community-based settings do not have existing
infrastructure to provide this training. AACOM strongly supports the
President's budget request of $10 million to fund the THCGME
Development Grants. This funding would allow potential THCGME training
sites to develop the infrastructure needed to administer residency
training programs.
National Health Service Corps
Approximately 50 million Americans live in communities with a
shortage of health professionals, lacking adequate access to primary
care. Through scholarships and loan repayment, the National Health
Service Corps (NHSC) supports the recruitment and retention of primary
care clinicians to practice in underserved communities. At the close of
fiscal year 2010, the NHSC provided a network of 7,500 primary
healthcare professionals in 10,000 sites in underserved communities.
However, this still fell approximately 20,000 practitioners short of
fulfilling the need for primary care, dental and mental health
practitioners in Health Professions Shortage Areas (HPSAs). Growth in
HRSA's Community Health Center Program must be complemented with
increases in the recruitment and retention of primary care clinicians
to ensure adequate staffing, which the NHSC provides. AACOM strongly
supports fully funding all aspects of the NHSC from both discretionary
and mandatory funding sources and recommends that the full $300 million
in mandatory funding be allocated and should be supplemented by
discretionary dollars in fiscal year 2013.
Workforce Commission
As the United States struggles to address with healthcare provider
shortages in certain specialties and in rural and underserved areas,
the country lacks a defined policy to address these critical issues.
The National Health Care Workforce Commission was designed to develop
and evaluate training activities to meet demand for healthcare workers.
Without funding, the Commission cannot identify barriers that may
create and exacerbate workforce shortages and improve coordination on
the Federal, State and local levels. Having this type of coordinating
body in place is becoming more critical as more Americans have
insurance coverage and the population ages, requiring access to care.
For these reasons, AACOM recommends that $3 million be appropriated to
fund the Commission.
National Institutes of Health
Research funded by the NIH leads to important medical discoveries
regarding the causes, treatments, and cures for common and rare
diseases as well as disease prevention. These efforts improve our
Nation's health and save lives. To maintain a robust research agenda,
further investment will be needed. AACOM recommends $32 billion in
fiscal year 2013 for the NIH.
In today's increasingly demanding and evolving medical curriculum,
there is a critical need for more research geared toward evidence-based
osteopathic medicine. AACOM believes that it is vitally important to
maintain and increase funding for biomedical and clinical research in a
variety of areas related to osteopathic principles and practice,
including osteopathic manipulative medicine and comparative
effectiveness. In this regard, AACOM encourages support for the NIH's
National Center for Complementary and Alternative Medicine to continue
fulfilling this essential research role.
Agency for Healthcare Research and Quality
AHRQ supports research to improve healthcare quality, reduce costs,
advance patient safety, decrease medical errors, and broaden access to
essential services. AHRQ plays an important role in producing the
evidence base needed to improve our Nation's health and healthcare. The
incremental increases for AHRQ's Patient Centered Health Research
Program in recent years, as well as the funding provided to AHRQ in the
ARRA, will help AHRQ generate more of this research and expand the
infrastructure needed to increase capacity to produce this evidence.
More investment is needed, however, to fulfill AHRQ's mission and
broader research agenda, especially research in patient safety and
prevention and care management research. AACOM recommends $400 million
in fiscal year 2013 for AHRQ's base, discretionary budget. This
investment will preserve AHRQ's current programs while helping to
restore its critical healthcare safety, quality, and efficiency
initiatives.
AACOM is grateful for the opportunity to submit its views and looks
forward to continuing to work with the Subcommittee on these important
matters.
______

Prepared Statement of the American Association of Colleges of Pharmacy
The American Association of Colleges of Pharmacy (AACP) is pleased
to submit this statement for the record regarding fiscal year 2013
funding. The 126 accredited pharmacy schools are engaged in a wide
range of programs supported by funding administered through the
agencies of the Department of Health and Human Services (HHS) and the
Department of Education. Recognizing the difficult task of balancing
needs and expectations with fiscal responsibility, AACP respectfully
offers the following recommendations for consideration as you undertake
your deliberations.
u.s. department of health and human services
Health Resources and Services Administration (HRSA)
AACP supports the Friends of HRSA recommendation of $7 billion for
HRSA in fiscal year 2013. Faculty at schools of pharmacy are integral
to the success of many HRSA programs conducting research rural health
delivery to reduce healthcare costs through the integration of
pharmacist-provided patient care services. Schools of pharmacy are
supported by HRSA to operate 9 of the 42 Poison Control Centers and,
this year, Dr. Scott Schaeffer of the University of Oklahoma received a
$100,000 poison center incentive grant for a deaf and hard of hearing
poison prevention outreach project.
AACP supports the Bureau of Health Professions and the National
Center for Health Workforce Analysis. Through the Pharmacy Workforce
Center, AACP joins HRSA-funded efforts to compile national health
workforce statistics to better inform future health professions
workforce needs in the United States.
AACP supports the Health Professions and Nursing Education
Coalition (HPNEC) recommendation of $280 million for Title VII and VIII
programs in fiscal year 2013. AACP member institutions are active
participants in BHPr programs. Schools of pharmacy engage in Title VII
programs, including Geriatric Education Centers and Area Health
Education Centers (AHEC). These community-based, interprofessional
programs are essential for providing the educational models to improve
quality through team-based, patient-centered care and serve as valuable
experiential education sites for student pharmacists and other health
professions students. Nine North Carolina AHECs are supported by 500
preceptor pharmacists and 22 academic pharmacists from the State's
schools of pharmacy. The Northeast Pennsylvania (NEPA) AHEC partners
with the NEPA Interprofessional Education Coalition to train student
pharmacists from Wilkes University to develop interprofessional
communication skills and recognize the importance of patient-centered
care.
For the AHEC program AACP recommends a funding level of at least
$75 million in fiscal year 2013. Pharmacy schools are eligible to
participate in the Centers of Excellence program and the Scholarships
for Disadvantaged Students program, to increase the number of
underserved individuals attending health professions schools and
minority workforce representation.
Agency for Healthcare Research and Quality (AHRQ)
AACP supports the Friends of AHRQ recommendation of $400 million
for AHRQ programs in fiscal year 2013. Pharmacy faculty are strong
partners with the Agency for Healthcare Research and Quality (AHRQ).
Academic pharmacists Drs. Glen T. Schumock, University of Illinois at
Chicago, and Sean Hennessy, University of Pennsylvania, are 2 of 11
principal investigators involved in the Developing Evidence to Inform
Decisions about Effectiveness center to support research on patient-
centered outcomes of healthcare with a focus on comparing clinical
effectiveness, safety and usefulness of medical treatments. Drs. Gary
R. Matzke, Virginia Commonwealth University, and Leigh Ann Ross,
University of Mississippi School of Pharmacy, were appointed to the
AHRQ Effective Health Care Program Pharmacy Workgroup. The Minnesota
Pharmacy Practice-Based Research Network has been accepted for the AHRQ
Primary Care Registry, existing as a living laboratory with a focus on
the collection of information using a network of pharmacies to address
the medication use process related to health and wellness.
Centers for Disease Control and Prevention (CDC)
AACP supports the CDC Coalition recommendation of $7.7 billion for
CDC core programs in fiscal year 2013 and the Friends of NCHS
recommendation of $162 million for the National Center for Health
Statistics. Information from the NCHS is essential for faculty engaged
in health services research and for the professional education of the
pharmacist. The educational outcomes established through the Center for
the Advancement of Pharmaceutical Education include those related to
public health. The opportunity for pharmacists to identify potential
public health threats through regular interaction with patients
provides public health agencies with on-the-ground epidemiologists
providing risk identification measures when patients seek medications
associated with preventing and treating travel-related illnesses.
Pharmacy faculty are engaged in CDC-supported research and activities
including delivery of immunizations, integration of pharmacogenetics in
the pharmacy curriculum, inclusion of pharmacists in emergency
preparedness, and the Million Hearts campaign. Faculty pharmacists at
the University of Mississippi received a $300,000 grant from CDC for a
project evaluating pharmacy cardiovascular risk reduction and $49,000
to study active surveillance attitudes and perceptions in prostate
cancer. Pharmacy schools actively participate in disaster relief
response efforts in their community. Student pharmacists and faculty
from University of Missouri Kansas City School of Pharmacy organized
efforts to assist Joplin and southern Missouri just hours after the
disaster and were among the first to respond to the area.
National Institutes of Health (NIH)
AACP supports the Adhoc Group for Medical Research recommendation
of $32 billion for NIH funding in fiscal year 2013. Pharmacy faculty
are supported in their research by nearly every institute at the NIH.
The NIH-supported research at AACP member institutions spans the full
spectrum from the creation of new knowledge through the translation of
that new knowledge to providers and patients. In 2011, pharmacy faculty
researchers received over $263 million in grant support from the NIH
and retain a strong commitment to increasing the number of biomedical
researchers. At Purdue University, Karen S. Hudmon received $264,927 in
funding from NIH National Cancer Institute for a pharmacy-based tobacco
cessation program. University of Tennessee Health Sciences Center
School of Pharmacy's Junling Wang received $886,742 from the NIH
National Institute on Aging to study medication therapy management and
its effect on racial and ethnic disparities. Christopher J. Destache,
Creighton University, received $410,913 to study on once-monthly
antiretroviral nanoparticles for HIV-1 treatment. James C. Cloyd,
University of Michigan, received up to $7,500,000 for
neurophysiologically based response pharmacotherapy for epilepsy. And,
Jennifer Marie Cochoba, University of California San Francisco,
received $165,952 from the NIH for a study on the effect of Pharmacist
counseling on antiretroviral adherence, 5K23MH087218-02.
Centers for Medicare and Medicaid Services (CMS)
AACP recommends a funding level of $526.2 billion for CMS programs
in fiscal year 2013. The impact of the ongoing efforts from CMS and the
Innovation Center continue depends on the integration of pharmacist
into healthcare teams. Marie A. Smith of the University of Connecticut
received $133,453 from CMS to study transitions of care from hospital
to home care and the role of medication reconciliation and medication
therapy management and Almut G. Winterstein, University of Florida,
received $255,000 from CMS for the development of new medication
measures that address the detection and prevention of adverse
medication-related patient safety events for future quality improvement
and reporting programs. Miriam Mobley-Smith, Dean of the Chicago State
University School of Pharmacy, was appointed to the CMS Advisory Panel
on Outreach and Education (APOE) in 2011. Pharmacy faculty work to
integrate pharmacists as members of the health team through studies in
health information technology, electronic health records, transitions
of care, and medication management.
u.s. department of education
The Department of Education supports the education of healthcare
professionals by assuring access to education through student financial
aid programs, educational research allows faculty to determine
improvements in educational approaches; and the oversight of higher
education through the approval of accrediting agencies. AACP supports
the Student Aid Alliance's recommendations to maintain the $5,550
maximum Pell grant. Admission to the pharmacy professional degree
program requires at least 2 years of undergraduate preparation. Student
financial assistance programs are essential to assuring student have
access to undergraduate, professional and graduate degree programs.
AACP recommends a funding level of at least $80 million for the Fund
for the Improvement of Post Secondary Education (FIPSE) as this is the
only Federal program that supports the development and evaluation of
higher education programs that can lead to improvements in higher
education quality.
______

Prepared Statement of the American Association for Cancer Research
The AACR, representing 34,000 laboratory, translational, and
clinical researchers; other healthcare professionals; and cancer
survivors and patient advocates, is pleased to offer the following
testimony. As the world's oldest and largest scientific organization
focused on every aspect of high-quality, innovative cancer research,
our mission is to prevent and cure cancer through research, education,
communication and collaboration.
To improve the health of all Americans, sustain the momentum
generated through past investments in biomedical research and restore
lost purchasing power due to stagnant budgets, the AACR recommends a
funding level increase to $33 billion for the NIH in fiscal year 2013
and a commensurate increase for the National Cancer Institute (NCI).
This level of support will enable the future scientific advances needed
to seize today's scientific momentum, save countless lives, and spur
innovation and economic prosperity for our country and all of our
citizens.
The vigorous pursuit of new breakthroughs in cancer research and
biomedical science supported through the NIH, as well as the NCI, saves
lives and promises to improve the entire spectrum of patient care, from
prevention, early detection, and diagnosis, to treatment and long-term
survivorship. As detailed in the AACR Cancer Progress Report 2011,
there has been an amazing acceleration in the rate of advances against
the 200 diseases we call cancer, reaching back 40 years to the signing
of the National Cancer Act. We are in a time of unprecedented
scientific opportunity, driven in large part by the vast new knowledge
generated through the mapping of the human genome and growing knowledge
of the biology of cancer. This wealth of information is being
translated into new treatments and preventive strategies for a number
of cancers.
Some of the extraordinary advances made against cancer include:
--From 1990 to 2007, death rates from all cancers combined dropped by
22 percent for men and 14 percent for women, resulting in
nearly 900,000 fewer deaths during that time.
--Today, more than 68 percent of adults live 5 years or more after
diagnosis, up from 50 percent in 1975.
--Today, 80 percent of children live 5 years or more after diagnosis,
up from 52 percent in 1975.
--There are about 12 million cancer survivors living in the United
States; 15 percent of them were diagnosed 20 or more years ago.
--Breast cancer death rates fell by about 28 percent from 1990 to
2006.
--Death rates from cervical cancer have dropped by nearly 31 percent
from 1990 to 2006.
--Prostate cancer death rates have fallen by 39 percent from 1990 to
2006.
--Colorectal cancer death rates have fallen by 28 percent in women,
and 33 percent in men.
--Death rates from stomach cancer have fallen by 34 percent in women,
and 43 percent in men.
The research community's ability to sustain this scientific
momentum, however, is increasingly jeopardized--particularly given the
Nation's current fiscal constraints. Funding for NIH has remained
essentially flat for the past decade, and due to the rate of biomedical
inflation, the agency has lost approximately $5.5 billion in purchasing
power since 2003. Even without adjusting for inflation, enacted
spending bills in recent years have imposed outright cuts, and looming
sequestration mandated by the Budget Control Act threatens further
reductions in 2013.
Cancer remains a significant public health challenge
Despite the significant progress we have achieved, cancer remains
the leading cause of death for Americans under age 85, and the second-
leading cause of death overall. In 2012, more than 1.6 million new
cancer cases will be diagnosed and more than half a million American
lives will be lost to this devastating disease. And due to its enormous
complexity, progress against certain cancers--such as pancreatic, brain
and lung cancers--has been extremely difficult.
Furthermore, funding challenges come at a time when we are facing a
``cancer tsunami'' as the baby boomer generation reaches age 65 and
beyond. More than three-quarters of all cancers are diagnosed in
individuals aged 55 and older, and the number of new cancer cases is
estimated to approach 2 million per year by 2025. This will
dramatically exacerbate the current problems with our healthcare
system, and will undoubtedly hit hardest those who can least afford
it--the elderly, medically underserved, and minority populations. We
have reached a critical inflection point in our ability to conquer
cancer, and we can only continue to make significant advances if we
renew our commitment to allocate the required resources to do so.
The investments that our Nation makes in cancer research and
biomedical science, particularly those supported by public funds
through the NCI and NIH will play a vital role in addressing the rising
cancer incidence, while at the same time curbing the overall annual
costs of cancer--which exceeded $263 billion in 2010.
Targeted therapies as the future of cancer treatment
One of the most promising new approaches in modern cancer treatment
is our ability to treat patients based on the specific characteristics
of a patient and his or her disease--often referred to as personalized
or precision medicine. Cancer research is leading the way toward the
realization of personalized medicine, in no small part thanks to
Federal investment in deciphering the underlying biology, such as the
Human Genome Project and, more recently, The Cancer Genome Atlas, an
NCI project that is identifying important genetic changes involved in
cancer.
Building on the tremendous progress in our understanding of the
molecular mechanisms of cancer, numerous novel agents have been
developed in recent years and many more are in development. New and
innovative clinical trials are now being conducted that use molecular
tests to identify which patients should be treated with which drugs.
The NCI is investing in efforts that will facilitate the translation of
this wealth of basic knowledge into new treatments, including
validating cancer biomarkers for prognosis, metastasis, treatment
response, and progression; accelerating the identification and
validation of potential cancer molecular targets; minimizing the
toxicities of cancer therapy; and integrating the clinical trial
infrastructure for speed and efficiency.
In fact, in 2011, two newly approved drugs--one for melanoma and
one for lung cancer--were breakthroughs in personalized medicine. Each
drug was approved with a diagnostic test that identifies patients for
whom the drug is most likely benefit.
Fighting cancer in challenging fiscal times
It is imperative that efforts to improve our Nation's fiscal
stability be grounded in the goal of securing the prosperity and well-
being of the American people. And it is not by chance that the United
States remains a leader in cancer research innovation and the
development of lifesaving treatments. Our preeminence is a direct
result of the steadfast determination of the American public and
Congress to reduce the burden of this devastating disease by supporting
and investing in research through the NIH and NCI.
Further, maintaining American global competitiveness is predicated
on its commitment to Federal support for biomedical research and
development (R&D). The United States led the world's economies in the
20th century because it led the world in innovation. Today we recognize
that the competition is more intense; the challenge is tougher; and
therefore, continuing to innovate is more important than ever before. A
sustained investment in research and development is essential to
creating new jobs for the 21st century. According to Science and
Engineering Indicators 2012, between 1999 and 2009, the United States
share of global R&D dropped from 38 percent to 31 percent, whereas it
grew from 24 percent to 35 percent in the ``Asia-10'' (China, India,
Indonesia, Japan, Malaysia, Philippines, Singapore, South Korea, Taiwan
and Thailand). While the United States remains a leader in supporting
science and technology, that position could soon be overtaken as Asian
countries, particularly China, continue to increase their national
investments in R&D. Biomedical research not only keeps America
competitive globally, it also has a strong positive impact on State and
local economies. NIH dollars are creating and saving high-wage, high-
tech jobs at a critical time for the U.S. economy. A recent report
published by a consortium of science and research medical organizations
estimated that NIH directly and indirectly supported nearly 488,000
public and private sector jobs, and generated $68 billion in new
economic activity in 2010 alone.
The NIH needs stable, predictable increases in funding
One out of every three women and one out of every two men in
America will develop cancer over their lifetime. More than a half
million people will succumb to this disease in 2012--accounting for
nearly 1 of every 4 deaths in America. This is the challenge we face
today. Only a sustained investment in research will allow us to
continue to build on the advances made during the past few decades to
curb the number of lives lost to cancer.
The AACR recognizes that Congress is being called upon to make
difficult decisions among many competing priorities. However, one of
the most important investments our country can make is in the NIH. Our
ability to exploit new and exciting findings for the benefit of cancer
patients is contingent on a strong, bipartisan commitment from Congress
to provide the necessary funding for the NIH and NCI. Millions of
current and future cancer patients and their loved ones are relying on
your support to change the face of cancer.
______

Prepared Statement of the American Association for Dental Research
Introduction
Mr. Chairman and members of the Committee, I am Rena D'Souza, Chair
of the Department of Biomedical Sciences at the Texas A&M Health
Science Center at Baylor College of Dentistry. My testimony is on
behalf of the American Association for Dental Research (AADR).
I thank the committee for this opportunity to testify about the
exciting advances in oral health science and for your past support of
research at the National Institutes of Health (NIH). This support has
made it possible for research funded by the National Institute of
Dental and Craniofacial Research (NIDCR) to improve oral health. The
investments we make today will create an exciting tomorrow for the
treatment and prevention of oral health diseases and disorders. In this
testimony, I will highlight how the advances described above have
benefited taxpayers and some of the challenges that lie ahead that need
to be addressed to prevent lapsing further behind other nations
throughout the world both scientifically and economically.
What is the American Association for Dental Research?
The American Association for Dental Research is a nonprofit
organization with more than 4,000 members in the United States. Its
mission is to: (1) advance research and gain a better understanding of
the importance of oral health; (2) support and represent the oral
health research community; and (3) educate the public about research
findings. The AADR is the largest Division of the International
Association for Dental Research.
Why is Oral Health Important?
Oral health is an essential component of health throughout life.
Poor oral health and untreated oral diseases and conditions can affect
the most significant human needs including the ability to eat and
drink, swallow, maintain proper nutrition, smile and communicate. For
over half a century, there has been a dramatic improvement in oral
health. However, it is still a major concern. Tooth decay and gum
disease represent most of the problem but complete tooth loss, oral
cancer, and facial anomalies are also factors. Tooth decay is the most
common oral health problem in the United States. More than 40 percent
of poor adults 20 years and older have at least one untreated decayed
tooth. Tooth decay affects more than 90 percent of adults over age 40.
Moreover, as the nation ages, oral health issues related to gum disease
and the impact of medical treatments and medicines will increase.
Oral Health Research and Development
Oral and Pharyngeal Cancer.--Most oral diseases and disorders arise
from the interplay of complex biological, behavioral, environmental and
genetic factors. Scientists now have the tools to understand health and
disease from a powerful systems perspective. Such deep insights will
enhance our ability to predict and more effectively manage many oral,
dental diseases and craniofacial abnormalities such as orofacial
clefting and ectodermal dysplasias. However, understanding and
addressing complex oral diseases will require melding these advances
with state-of-the-science clinical, epidemiological and bioinformatics
approaches to more precisely identify diseases at their earliest
inception, direct individualized therapies, and predict disease
outcomes. One area that offers considerable opportunity is oral and
pharyngeal cancer, which kills about 7,600 Americans each year. These
deaths are particularly tragic because detection and treatment of early
stage oral cancer usually results in much higher survival rates than if
the disease is diagnosed and treated at late stages. Despite annual
U.S. spending of approximately $3.2 billion on head and neck cancer
treatment, relative survival rates have not improved during the past 16
years and remain among the lowest of all major cancers. Oral cancer
survival among African-American men has actually decreased. Approaches
under development include devices to aid in earlier detection such as
rapid gene-expression measurement tools that assess suspicious lesions
removed for biopsy and integration of screening, diagnosis, and
treatment. For example, toward achieving this goal, NIDCR-supported
researchers recently devised a customized optical device that allows
clinicians to visualize in a completely new way areas in the oral
cavity that may be developing oral cancer.
Genome-Wide Association Studies.--The emerging science of genome-
wide association studies (GWAS) and other rapidly evolving genome-wide
technologies is producing exciting findings in oral, dental and
craniofacial health. A recent family based genome-wide linkage study
indicated possible developmental links between cleft lip and/or palate,
caries and a range of dental malformations and identified several
candidate genes for caries risk, pointing unexpectedly to genetic loci
for salivary flow and diet preference. The NIDCR's continued support of
genomic approaches may yield important new insights into the causes and
progression of other complex conditions such as temporomandibular
muscle and joint disorders associated with chronic orofacial pain, oral
cancer, periodontal diseases and Sjogren's syndrome.
Saliva-based Diagnostic Tests.--Saliva-based diagnostic tests offer
significant potential for improving both oral and general health. Thus
further development and validation of these approaches will enable
improved preemptive care by detecting molecular markers predictive of
disease before symptoms arise, or by providing diagnosis of the
earliest signs of disease. Recently, a consortium of NIDCR-supported
research groups compiled the first comprehensive list of proteins
secreted by the major salivary glands, leading to a compendium of
salivary proteins that will form the basis for future efforts in
salivary diagnostics and therapeutics.
Biomedical Research Workforce.--The investment decisions that
Congress makes this year will have a profound impact on the future of
America's physical, dental, and economic health. Federal investments in
basic research play a major role in scientific discovery, leading to
economic growth and fostering global competitiveness. NIDCR is
committed to ensuring that the biomedical research workforce is
prepared to address unique dental and craniofacial research questions.
The task of getting students interested in biomedical research needs to
be combined with mentoring opportunities to bolster retention.
National Center for Advancing Translational Sciences.--NIH has
established a new center, called the National Center for Advancing
Translational Sciences (NCATS). Currently, many costly, time-consuming
bottlenecks exist in the translational pipeline. Working in partnership
with the public and private sectors, the Center will develop innovative
ways to reduce, remove or bypass these bottlenecks. This will speed the
delivery of new drugs, diagnostics and medical devices to patients,
including the results of oral health research.
NIH Public Access Policy.--The NIH Public Access Policy ensures
that the public has access to the published results of NIH funded
research. It requires scientists to submit final peer-reviewed journal
manuscripts that arise from NIH funds to the digital archive PubMed
Central upon acceptance for publication. The scientific community
relies on publishers to manage the post-grant peer review process to
evaluate the merit and authenticity of the conclusions of the research.
However, post-grant peer review is not funded by the agencies at all.
No Federal funding goes into the publication process. In essence,
privately funded articles, which are not subject to an open or public
access policy, will have to subsidize the decreased readership
resulting from the public access policy. In order for a journal to
maintain readership, a ratio of privately funded research versus
federally funded research will have to be maintained. With an expanded
open access policy, it is feared that a number of small nonprofit
scholarly journals will experience decreased subscriptions that will
create an operating loss for the journal.
Challenges to Research
For many years, the United States has been a world leader in
research and development. In order for the United States to thrive in
today's innovation-oriented economy, we need to maintain a world class
commitment to science and research. Future advances in healthcare
depend on today's investments in basic research on the fundamental
causes and mechanisms of disease, new technologies to accelerate
discoveries, innovations in clinical research, and a robust pipeline of
creative and skillful biomedical researchers. To continue reaping the
benefits of a bold research funding platform, Congress must make
science a national priority. With continued support, NIH investigators
will help to revolutionize patient care, reduce the growth of
healthcare costs, and generate significant national economic growth.
Fiscal Year 2013 Budget Request
As you can see, Mr. Chairman, there are many research opportunities
with an immediate impact on patient care that need to be pursued. A
steady and substantial funding stream for NIH overall, and NIDCR in
particular, is absolutely necessary in order to continue improving the
oral health of Americans. We support the recommendation of the Ad Hoc
Group for Medical Research that the Subcommittee recognize NIH as a
critical national priority by providing at least $32 billion in funding
in the fiscal year 2013 Labor, Health and Human Services, Education
appropriations bill. Of this amount, NIDCR should receive a fiscal year
2013 appropriation of $450 million. This funding recommendation
represents the minimum investment necessary to avoid further loss of
promising research and at the same time allows the NIH's budget to keep
pace with biomedical inflation.
Thank you for this opportunity to testify. We at AADR look forward
to having the opportunity to work with the Congress and NIH to help
build a strong and successful research enterprise.
______

Prepared Statement of the American Academy of Family Physicians
The American Academy of Family Physicians, representing 100,300
family physicians and medical students nationwide, urges the Senate
Appropriations Subcommittee on Labor, Health and Human Services, and
Education to invest in our Nation's primary care physician workforce in
the fiscal year 2013 appropriations bill to promote the efficient,
effective delivery of healthcare.
We recommend that the Committee provide the Health Resources and
Services Administration and the Agency for Healthcare Research and
Quality:
--At least $71 million for Health Professions Primary Care Training
and Enhancement, authorized under Title VII, Section 747 of the
Public Health Service Act (PHSA);
--$10 million for Teaching Health Centers development grants (PHSA
Title VII, Sec. 749A);
--$4 million for Rural Physician Training Grants (PHSA Title VII,
Sec. 749B);
--$122.2 million for the Office of Rural Health Policy (PHSA
Sec. Sec. 301, 330A, and 338J, and Sec. Sec. 711 and 1820(j),
Title XVIII of the Social Security Act);
--At least $300 million for the National Health Service Corps (PHSA
Sec. 338A, B, and I);
--$120 million for the Primary Care Extension program (PHSA
Sec. 399V-1) in fiscal year 2013; and
--$3 million for the National Health Care Workforce Commission (ACA
Sec. 5101).
health resources and services administration (hrsa)
The AAFP urges the Committee to provide at least $7 billion for
HRSA in the fiscal year 2013 appropriations bill. Fundamental to HRSA's
mission of improving access is supporting efforts to train and place
the necessary primary care physician workforce. There is ample evidence
that primary care physicians serve as a strong foundation for a more
efficient and effective healthcare system. Federal investment not only
would help to guide health system change to achieve optimal, cost-
efficient health for everyone, but also would support primary care
medicine training in what the January 2012 Bureau of Labor Statistics
Projections recognized as ``the most rapidly growing sector in terms of
employment through 2020.''
Title VII Health Professions Training Programs.--As the only
medical specialty society devoted entirely to primary care, the AAFP is
gravely concerned that a failure to provide adequate funding for the
Title VII, Section 747, Primary Care Training and Enhancement (PCTE)
program, will destabilize education and training support for family
physicians. Between 1998 and 2008, in spite of persistent primary care
physician shortages, family medicine lost 46 training programs and 390
residency positions, and general internal medicine lost nearly 900
positions.\1\ A study published in the Annals of Family Medicine on the
impact of Title VII training programs found that physicians who work
with the underserved at Community Health Centers and National Health
Service Corps sites are more likely to have trained in Title VII-funded
programs.\2\ Title VII primary care training grants are vital to
departments of family medicine, general internal medicine, and general
pediatrics; they strengthen curricula; and they offer incentives for
training in underserved areas. In the coming years, medical services
utilization is likely to rise, given the increasing and aging
population, as well as the insured status of more people. These
demographic trends will worsen family physician shortages. The AAFP
urges the Committee to increase the level of Federal funding for
primary care training to at least $71 million in fiscal year 2013 to
support the continuing work of grantees and allow for a new grant
cycle.
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\1\ Phillips RL and Turner, BJ. The Next Phase of Title VII Funding
for Training Primary Care Physicians for America's Health Care Needs.
Ann Fam Med. 2012;10(2):163-168.
\2\ Rittenhouse DR, et al. Impact of Title VII training programs on
community health center staffing and National Health Service Corps
participation. Ann Fam Med. 2008;6(5):397-405.
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Teaching Health Centers.--The AAFP has long called for reforms to
graduate medical education programs in order to encourage the training
of primary care residents in nonhospital settings, where most primary
care is delivered. An excellent first step is the innovative Teaching
Health Centers program, authorized under Title VII, Sec. 749A, to
increase primary care physician training capacity now administered by
HRSA.
Federal financing of graduate medical education has led to training
that occurs mainly in hospital inpatient settings, even though most
patient care is delivered outside of hospitals in ambulatory settings.
The Teaching Health Centers program provides resources to qualified
community-based ambulatory care settings that operate a primary care
residency. We believe that this program requires an investment of $10
million in fiscal year 2013 for planning grants.
Rural Health Needs.--HRSA's Office of Rural Health Policy focuses
on key rural health policy issues and administers targeted rural grant
programs. As members of the medical specialty most likely to enter
rural practice, family physicians recognize the need to dedicate
resources to rural health needs.
A recent study found that medical school rural programs have had a
significant impact on rural family physician supply and called for
wider adoption of that model to substantially increase access to care
in rural areas, compared with greater reliance on international medical
graduates or unfocused expansion of traditional medical schools.\3\
HRSA's Rural Physician Training Grant Program will help medical schools
recruit students most likely to practice medicine in rural communities.
This program will help provide rural-focused experience and increase
the number of medical school graduates who practice in underserved
rural communities. The AAFP recommends that the Committee provide $4
million for the Rural Physician Training Grant Program in fiscal year
2013.
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\3\ Rabinowitz, HK, et al. Medical School Rural Programs: A
Comparison With International Medical Graduates in Addressing State-
Level Rural Family Physician and Primary Care Supply. Academic
Medicine, Vol. 87, No. 4/April 2012.
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Primary Care in Underserved Areas.--The National Health Service
Corps (NHSC) recruits and places medical professionals in Health
Professional Shortage Areas to meet the need for healthcare in rural
and medically underserved areas. The NHSC provides scholarships or loan
repayment as incentives for physicians to enter primary care and
provide healthcare to Americans in Health Professional Shortage Areas.
By addressing medical school debt burdens, the NHSC also helps to
ensure wider access to medical education opportunities. The AAFP
recommends that the Committee provide at least $300 million for the
National Health Service Corps for fiscal year 2013.
The AAFP has worked closely with HRSA to promote data-driven
community health center expansion. The mapping tool developed and
managed by the Robert Graham Center for Policy Studies in Family
Practice and Primary Care identifies areas in greatest need of
federally Qualified Health Centers. Since the launch of the tool on
July 1, 2010, the UDS Mapper has registered more than 4,500 users; it
can be found at http://www.udsmapper.org/about.cfm.
agency for heatlhcare research and quality (ahrq)
The AAFP supports the work of AHRQ's Center for Primary Care,
Prevention, and Clinical Partnerships (CP\3\), which serves as the home
for the AHRQ's Practice-Based Research Network of primary care
ambulatory practices. This network studies community-based practice.
Furthermore, we recognize AHRQ as an important resource for primary
care workforce data. The AAFP asks that the Committee provide at least
$400 million for AHRQ in fiscal year 2013.
Primary Care Extension Program.--The AAFP supports AHRQ's Primary
Care Extension Program to provide information to primary care
physicians about evidence-based therapies and techniques so that they
can incorporate them into their practice. As AHRQ develops more
scientific evidence on best practices and effective clinical
innovations, the Primary Care Extension Program will disseminate the
information learned to primary care practices across the Nation in much
the same way as the Federal Cooperative Extension Service provides
small farms with the most current agricultural information and
guidance. The AAFP recommends that the Committee provide $120 million
for the AHRQ Primary Care Extension program in fiscal year 2013.
national health care workforce commission
Appointed on September 30, 2010, the 15-member National Health Care
Workforce Commission was intended to serve as a national resource with
a broad array of expertise. The Commission was directed to analyze
current workforce distribution and needs; evaluate healthcare education
and training; identify barriers to improved coordination at the
Federal, State, and local levels and recommend ways to address them;
and encourage innovations to address population needs, changing
technology, and other factors.
There is broad consensus about the waning availability of primary
care physicians in the United States, but estimates of the severity of
the regional and local shortages vary. The AAFP supports the work of
the Commission to analyze primary care shortages and propose
innovations to help produce the physicians that our Nation needs and
will need in the future. We request that the Committee provide $3
million in fiscal year 2013 so that this important Commission can begin
this important work.
______

Prepared Statement of the American Association of Immunologists
The American Association of Immunologists (AAI), a not-for-profit
professional society comprised of more than 7,400 of the world's
leading experts on the immune system, appreciates this opportunity to
submit this testimony regarding appropriations for the National
Institutes of Health (NIH) for fiscal year 2013. AAI members work in
academia, Government, and industry. Most of our members either receive
funding from NIH to support their research \1\ or depend on the basic
research conducted by NIH-funded scientists in developing therapeutics
to prevent or treat disease.\2\ Whether public or private sector;
basic, translational or clinical; American or international; most
biomedical researchers rely on the leadership of, and funding from, the
NIH--the world's premier medical research organization.
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\1\ Many AAI members receive grants from the National Institute of
Allergy and Infectious Diseases, the National Cancer Institute, and the
National Institute on Aging, as well as other NIH Institutes and
Centers.
\2\ NIH funding has a definite impact on the private sector. ``. .
. [T]he National Bureau of Economic Research concluded that, in
contrast to the pattern of public spending . . . displacing private
activity in the economy, a dollar of NIH support for research leads to
an increase of private medical research of roughly 32 cents.'' Everett
Ehrlich, An Economic Engine: NIH Research, Employment and the Future of
the Medical Innovation Sector, http://www.unitedformedicalresearch.com/
wp-content/uploads/2011/05/UMR_Economic-Engine.pdf.
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NIH's preeminence--and America's dominance--in advancing medical
research, discovering treatments and cures, and ``growing'' brilliant
young scientists has been unchallenged for more than 50 years. However,
continued erosion of NIH funding has already led to the loss of highly
qualified scientists and the closures of labs.\3\ For those scientists
who are able to continue, competing and securing research support
increasingly occupies the time that could--and should--be dedicated to
new advances and discoveries.
---------------------------------------------------------------------------
\3\ FASEB, ``Federal Funding for Biomedical and Related Life
Sciences Research FY 2013,'' http://www.faseb.org/
LinkClick.aspx?fileticket=10Qs6teI4kY%3D&tabid=64. Everett Ehrlich,
NIH's Role in Sustaining the U.S. Economy, http://
www.unitedformedicalresearch.com/wp-content/uploads/2012/03/NIHs-Role-
in-Sustaining-the-US-Economy-2011.pdf.
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NIH funding is an important driver of our economy. Unlike many
Federal agencies, NIH distributes most (>80 percent) of its $30.7
billion budget to scientists in all 50 States, making NIH funding a
formidable engine for local and national economic growth.\4\ NIH
funding supports highly skilled jobs focused on improving human and
animal health; less skilled jobs which support laboratories, academic
institutions, and a community of employees; \5\ and the training of our
Nation's future researchers, inventors and innovators. NIH-funded
discoveries also fuel the success of our Nation's biotechnology and
pharmaceutical industries.
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\4\ NIH funding supports ``almost 50,000 competitive grants to more
than 300,000 researchers at more than 2,500 universities, medical
schools, and other research institutions in every State and around the
world.'' http://nih.gov/about/budget.htm. (March 1, 2012)
\5\ ``One study estimates that every dollar of NIH support returns
$2.21 in goods and services in just 1 year, and that on average, every
NIH grant creates seven high-quality jobs.'' Testimony of Francis S.
Collins, M.D., Ph.D., March 28, 2012, page 7, http://
www.appropriations.senate.gov/ht-
labor.cfm?method=hearings.view&id=8a1dcace-6f68-4e35-ad94-4409966e2ffb.
See also Ehrlich, NIH's Role in Sustaining the U.S. Economy (see
footnote 1, above).
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The broad reach of the immune system
All humans and other animals require a properly working immune
system to survive. Optimally, this system defends against infectious
agents which require a host to persist and propagate. Many infectious
diseases, including influenza, HIV/AIDS, tuberculosis, malaria, and the
common cold, challenge--and sometimes overcome--the defenses mounted by
the immune system. Other malfunctions result in the immune system
attacking our normal body tissues, causing ``autoimmune'' diseases or
disorders, including Type 1 diabetes, multiple sclerosis, rheumatoid
arthritis, asthma, allergies, inflammatory bowel diseases, and
lupus.\6\ The immune system also impacts many other diseases and
conditions, including cancer, Alzheimer's,\7\ obesity, Type II
diabetes, psoriasis, alopecia areata, and pregnancy loss.
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\6\ The immune system works by recognizing and attacking bacteria,
viruses, and tumor cells inside the body. It is also responsible for
the rejection response following transplantation of organs or bone
marrow.
\7\ Allison Bond, ``Immune Response May Worsen Alzheimer's,''
Scientific American, January 18, 2010, http://
www.scientificamerican.com/article.cfm?id=inflamed-neurons.
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In addition, urgent public health challenges require understanding
the immune response to pathogens that might cause the next pandemic;
man-made and natural infectious organisms (including plague, smallpox
and anthrax) that could be used for bioterrorism; and environmental
threats that could cause or exacerbate disease.\8\ Although immunology
is a relatively young field,\9\ research advances have already yielded
remarkable progress.\10\ But solving key scientific questions that lead
to prevention and cures cannot occur without a strong, sustained
biomedical research enterprise, adequately funded through
appropriations to NIH.
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\8\ To best protect against emergent threats, AAI believes that
scientists should focus on basic research, including understanding the
immune response, identifying new pathogens, and developing tools
(including vaccines) to protect against these pathogens. For example,
to best protect against an influenza pandemic, scientists should focus
on basic research to combat seasonal flu, including building capacity,
pursuing new production methods, and seeking optimized flu vaccines and
delivery methods.
\9\ Most of our basic understanding of the immune system has
developed in the last 50 years, although the first vaccine (against
smallpox) was developed in 1798.
\10\ In 2011, three NIH-supported immunologists (the late Ralph
Steinman, M.D., Bruce Beutler, M.D., and Jules Hoffman, Ph.D.) received
the Nobel Prize in Medicine for their important contributions to the
field.
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Recent immunological discoveries and translation to treatment
AIDS vaccine.--Study of the immune system has helped lengthen the
lives of those diagnosed with
HIV from months in the 1980s to as much as 50 years today.\11\
Recently, several key advances have helped us understand how HIV evades
immune recognition and how to generate more efficacious HIV vaccines.
In one discovery, scientists were able to visualize neutralizing
antibodies bound to HIV on a molecular level, determine the nature of
the interaction, and find a broadly neutralizing antibody that combats
several strains of HIV.\12\ Such advances may lead to effective
therapies and vaccines against many viruses, including HIV.
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\11\ Anthony S. Fauci, ``After 30 years of HIV/AIDS, real progress
and much left to do,'' Washington Post, May 27, 2011, http://
www.washingtonpost.com/opinions/after-30-years-of-hivaids-real-
progress-and-much-left-to-do/2011/05/27/AGbimyCH_story.html.
\12\ Robert Pejchal et al., ``A Potent and Broad Neutralizing
Antibody Recognizes and Penetrates the HIV Glycan Shield,'' Science
334, (2011):1097.
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Universal Flu vaccine.--Remarkable advances are also being made on
improved seasonal influenza vaccines and ``universal'' flu vaccines
that would provide protection against multiple strains of influenza.
Anti-cancer vaccines.--In testimony submitted to this subcommittee
in 2009, AAI described a promising new cancer treatment that would
redirect the immune system to attack cancer cells by manipulating the
inhibitory molecule CTLA-4. In 2011, the Food and Drug Administration
(FDA) approved CTLA-4 blockade (ipilimumab) for the treatment of
metastatic melanoma after Phase III clinical trials showed that
ipilimumab improved survival for these patients.\13\ In 2010, the first
therapeutic cancer vaccine (Provenge), for the treatment of prostate
cancer, was approved by the FDA. This vaccine takes advantage of the
immune system's ability to sense and then attack cancer cells.\14\ Both
therapies were based on fundamental immunological discoveries of the
past several decades and are now guiding the development of numerous
other therapeutics which direct the immune system to specifically
attack cancer cells.
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\13\ Stephen Hodi et al., ``Improved Survival with Ipilimumab in
Patients with Metastatic Melanoma,'' N Engl J Med 363, (2010): 711-723.
\14\ See http://www.fda.gov/NewsEvents/Newsroom/PressAnnouncements/
ucm210174.htm.
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Malaria vaccine.--A recent phase III study for the malaria vaccine
RTS,S showed that the progression of severe disease could be reduced by
the vaccine by about half, promising data toward the development of a
vaccine for a disease that is of urgent concern to people worldwide and
to U.S. troops stationed abroad.
The importance of sustained NIH funding
AAI greatly appreciates this subcommittee's long history of strong
bipartisan support for biomedical research. NIH funding has supported
many excellent projects to advance human health and strengthen the
Nation's research infrastructure. However, fiscal pressures in recent
years have resulted in flat or reduced NIH funding. Together with
increases in biomedical research inflation, these budgets have
significantly eroded NIH's purchasing power; the President's fiscal
year 2013 budget would reduce NIH's purchasing power to 2001
levels.\15\ AAI is deeply concerned that inadequate NIH funding will
harm ongoing research, weaken the U.S. biomedical research enterprise,
and enable global competitors to recruit our best scientists.
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\15\ FASEB, Predictable and Sustainable Funding for NIH Will Drive
Innovation and Progress, 2012, http://www.faseb.org/
LinkClick.aspx?fileticket=aDQlNW4adp0%3d&tabid=431.
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AAI recommendation for NIH funding for fiscal year 2013
Although AAI believes that NIH needs a substantial infusion of
funds, we realize that such an increase is unlikely this year.
Therefore, AAI recommends a budget for NIH of at least $32 billion to
enable NIH to support existing research projects, fund a limited number
of excellent new ones, and stabilize the research enterprise. More is
needed, however, to grow the system or inspire confidence in it,
particularly among the brightest young students who are increasingly
hesitant to pursue careers in biomedical research.
AAI priorities for fiscal year 2013
Biomedical innovation and discovery are best achieved through
individual investigator-initiated research, i.e., researchers working
all around the country, whose grant applications are peer-reviewed and
funded by NIH. ``Top-down'' science, in which the Government specifies
the type of research it wishes to fund, is less likely to achieve the
desired goals than funding the best grant applications. AAI is
concerned, therefore, that the President's budget reduces funding for
research project grants (RPGs) by $26 million. While NIH's new
management plan anticipates funding a larger number (672) of new and
competing RPGs, this reduced funding would require awards to be smaller
and/or shorter in duration. Although this may be the best way for NIH
to manage less RPG funding, it will not solve the fundamental problem
caused by the erosion of the NIH budget: fewer scientists receiving the
support they need to do their work.
The President's budget provides an increase of $64 million to the
National Center for Advancing Translational Sciences (NCATS), including
an increase of $40 million for the Cures Acceleration Network (CAN).
Although AAI supports NIH's desire to facilitate the translation of
basic research from ``bench to bedside,'' AAI questions whether such
large increases are wise when overall RPG funding is experiencing a
significant and worrisome decline.
AAI is concerned about a new administration policy that limits the
ability of Government scientists to attend privately sponsored
scientific meetings and conferences.\16\ Government scientists are
valued members of our organization and contribute significantly to
scientific advancement in the field. It is as important to AAI to have
them attend our meetings as it is for them to attend. Dialogue and
information exchange among scientists from Government, academia,
industry and private institutes are absolutely essential, and any
barriers to the participation of Government scientists undermines the
best interests of science.
---------------------------------------------------------------------------
\16\ See http://www.hhs.gov/travel/policies/
2012%20policy%20manual.pdf.
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The NIH Public Access Policy
As the owner and publisher of The Journal of Immunology (``The
JI''), AAI believes that the NIH Public Access Policy (``Policy'')
duplicates publishing services which are already provided cost-
effectively and well by the private sector, including not-for-profit
scientific societies. AAI and other scholarly publishers already
publish, and make publicly available, thousands of scientific journals
with millions of articles that report cutting-edge research. Many
publishers make abstracts available online immediately and at no cost
to the public. Most publishers who impose an embargo period (necessary
to prevent the loss of subscriptions which defray publication costs)
make available not only the articles supported by NIH funding, but all
articles regardless of funding source. As a result, many publisher
websites contain a more complete repository of relevant literature than
does NIH, and often include the entire archives of the journal.
NIH should work with, rather than compete with, private publishers
to enhance public access; address publishers' key concerns, including
respecting copyright and ensuring journals' continued ability to
provide quality, independent peer review of NIH-funded research; and
publicly report on the cost of the Policy.
conclusion
AAI thanks this subcommittee for its strong support for medical
research, NIH and the thousands of researchers who devote their lives
to scientific discovery and the prevention, treatment, and cure of
disease.
______

Prepared Statement of the American Association of Museums
Chairman Harkin, Ranking Member Shelby, and members of the
subcommittee, thank you for inviting me to submit this testimony. My
name is Ford Bell and I serve as President of the American Association
of Museums (AAM). I also submit this testimony on behalf of the larger
museum community--including the American Association for State and
Local History, the Association of Art Museum Directors, the Association
of Children's Museums, the American Public Gardens Association, and
Heritage Preservation--to request that the subcommittee make a renewed
investment in museums in fiscal year 2013. We urge your support for $50
million for the Office of Museum Services (OMS) at the Institute of
Museum and Library Services (IMLS).
AAM is proud to represent the full range of our Nation's museums--
including aquariums, art museums, botanic gardens, children's museums,
culturally specific museums, historic sites, history museums, maritime
museums, military museums, natural history museums, planetariums,
presidential libraries, science and technology centers, and zoos, among
others--along with the professional staff and volunteers who work for
and with museums. AAM is proud to work on behalf of the 17,500 museums
that employ 400,000 people, spend more than $2 billion annually on K-12
educational programming, receive more than 90 million visits each year
from primary and secondary school students, and contribute more than
$20 billion to local economies.
IMLS is the primary Federal agency that supports the Nation's
museums, and OMS awards grants to help museums digitize, enhance and
preserve their collections; provide teacher training; and create
innovative, cross-cultural and multi-disciplinary programs and exhibits
for schools and the public. The 2012-2016 IMLS Strategic Plan lists
clear priorities: placing the learner at the center of the museum
experience, promoting museums as strong community anchors, supporting
museum stewardship of their collections, advising the President and
Congress on how to sustain and increase public access to information
and ideas, and serving as a model independent Federal agency maximizing
value for the American public. IMLS is indeed a model Federal agency.
In late 2010, a bill to reauthorize IMLS for 5 years was enacted
(by voice vote in the House and unanimous consent in the Senate). The
bipartisan reauthorization included several provisions proposed by the
museum field, including enhanced support for conservation and
preservation, emergency preparedness and response, and statewide
capacity building. The reauthorization also specifically supports
efforts at the State level to leverage museum resources, including
statewide needs assessments and the development of State plans to
improve and maximize museum services throughout the State. The bill
(now Public Law 111-340) authorized $38.6 million for the IMLS Office
of Museum Services to meet the growing demand for museum programs and
services. The fiscal year 2012 appropriation of $30,859,000--equal to
President Obama's fiscal year 2013 budget request--represents a nearly
15 percent decrease from the fiscal year 2010 appropriation of
$35,212,000. We urge the subcommittee to provide $50 million for the
IMLS Office of Museum Services.
To be clear, museums are essential in our communities for many
reasons:
--Museums are key education providers.--Museums already offer
educational programs in math, science, art, literacy, language
arts, history, civics and government, economics and financial
literacy, geography, and social studies, in coordination with
State and local curriculum standards. Museums also provide
experiential learning opportunities, STEM education, youth
training, and job preparedness. They reach beyond the scope of
instructional programming for schoolchildren by also providing
critical teacher training. There is a growing consensus that
whatever the new educational era looks like, it will focus on
the development of a core set of skills: critical thinking, the
ability to synthesize information, the ability to innovate,
creativity, and collaboration. Museums are uniquely situated to
help learners develop these core skills.
--Museums create jobs and support local economies.--Museums serve as
economic engines, bolster local infrastructure, and spur
tourism. Both the U.S. Conference of Mayors and the National
Governors Association agree that cultural assets such as
museums are essential to attracting businesses, a skilled
workforce, and local and international tourism. Museums pump
more than $20 billion into the American economy, creating many
jobs.
--Museums address community challenges.--Many museums offer programs
tailored to seniors, veterans, children with special needs,
persons with disabilities, and more, greatly expanding their
reach and impact. For example, some have programs designed
specifically for children on the autism spectrum, some are
teaching English as a second language, and some are serving as
locations for supervised family visits through the family court
system. In 2011, more than 1,500 museums participated in the
Blue Star Museums initiative, offering free admission to all
active duty and reserve personnel and their families from
Memorial Day through Labor Day.
--Digitization and traveling exhibitions bring museum collections to
underserved populations.--Teachers, students, and researchers
benefit when cultural institutions are able to increase access
to trustworthy information through online collections and
traveling exhibits. Most museums, however, need more help in
digitizing collections.
Grants to museums are highly competitive and decided through a
rigorous, peer-reviewed process. Even the most ardent deficit hawks
view the IMLS grantmaking process--the ``regular process''--as a model
for the Nation. It would take approximately $124.6 million to fund all
the grant applications that IMLS received from museums in 2011. But
given the significant budget cuts, many highly rated grant applications
go unfunded each year:
--Only 32 percent Museums for America/Conservation Project projects
were funded;
--Only 15 percent National Leadership/21st Century Museum
Professionals projects were funded;
--Only 64 percent Native American/Hawaiian Museum Services projects
were funded; and
--Only 37 percent African American History and Culture projects were
funded.
It should be noted that each time a museum grant is awarded,
additional local and private funds are also leveraged. In addition to
the required dollar-for-dollar match required of museums, grants often
spur additional giving by private foundations and individual donors. A
recent IMLS study found that 67 percent of museums that received
Museums for America grants reported that their IMLS grant had
positioned the museum to receive additional private funding.
Here are just a few examples of how Office of Museum Services
funding is used:
--The Iowa Children's Museum in Coralville will use its $117,769
Museums for America grant awarded in 2011 to establish
``MoneyWorks!''--a financial literacy project targeting
children aged 4 to 10. The proposed project will empower
children by adding active financial literacy experiences to the
museum's current CityWorks exhibit. ``MoneyWorks!'' enables
children and their families to take on the roles of bank
tellers, pizza chefs, doctors, and more in a pretend city
environment where they can explore the concepts of earning,
spending, saving, and giving. Through basic math skills,
creative problem solving, and increased awareness of financial
choices and consequences, kids will acquire a lifetime of
essential financial literacy skills.
--The National Czech and Slovak Museum and Library in Cedar Rapids,
Iowa, will use its $148,351 Museums for America grant awarded
in 2011 to capture the personal stories and family sagas of
Czech and Slovak Cold War emigres and recent (post-Velvet
Revolution) Czech and Slovak immigrants to America. Beginning
in Cedar Rapids and then extending to New York, Chicago, the
District of Columbia, Florida, and the San Francisco Bay Area,
this project will involve a new permanent exhibition, a
traveling exhibit, and an oral history recording booth to be
designed, constructed, and implemented in the museum.
--The University of Northern Iowa Museums in Cedar Falls will use its
$149,684 Museums for America grant awarded in 2011 to protect
and preserve the archive's resources (9,000 original documents
relating to early Iowa education), ensuring public access to
this valuable historical information. The historically
important Marshall Center School, owned by UNI Museums,
maintains a collection of over 3,000 photographs, school board
records, oral histories, teacher certificates and contracts,
teaching materials, maps, diaries, letters, furnishings, and
textbooks from the 1850s to the 1960s. With the addition of the
statewide collection of official rural school documents, the
UNI Museums' Center for the History of Rural Iowa Education and
Culture is poised to become a significant national center for
the study of educational, rural, and women's history.
--The McWane Science Center in Birmingham, Alabama, will use its
$140,020 Museums for America grant awarded in 2011 to partner
with the W.J. Christian public school in Birmingham to provide
teacher training workshops, classroom outreach programs,
science laboratories and programs, and a school-based science
resource center. The partnership is designed to pair a formal,
public school with an informal education institution to provide
low-income and disadvantaged students with the opportunity to
access quality learning environments, equipment, and
laboratories. The project will result in a revised science
curriculum and professional development resources for science
teachers. The project aims to engage students in science and
inspire them to pursue opportunities for advanced science
education. The Science Education Partnership will help further
the museum's mission of ``changing lives through science and
wonder'' by serving as an extension of the school-based science
classroom.
--The Alabama Space Science Exhibit Commission in Huntsville,
Alabama, will use its $150,000 Museums for America grant
awarded in 2011 to develop, ``Carrying Out the Mission,'' an
exhibit on astronaut training at its museum, the U.S. Space &
Rocket Center. The center houses one of the world's largest
collections of space artifacts and ``Carrying Out the Mission''
is one part of a 12-module exhibit plan that will use
historical artifacts, hands-on interactive stations, two
problem-solving computer simulators, and oral histories to
explore human space exploration, and in the process inspire
current and future generations to engage in science.
--The Birmingham Civil Rights Institute in Birmingham, Alabama, is
using its $129,830 Museum Grants for African American History
and Culture awarded in 2010 to better engage its diverse
audiences by enhancing the staff capacity to effectively
utilize technology. With the recent installation of new
interactive exhibits and a fiber optic network, the museum will
now develop the skills of its staff to more fully utilize the
museum's education programs and services. The museum will hire
a computer and information systems assistant to provide
technical support for exhibitions and staff functions, and a
series of technology training programs will be offered to all
staff. The project will promote greater efficiency between the
various museum departments through improved communication and
coordination, information sharing, data collection and
analysis, and external communication with visitors and other
stakeholders.
In closing, I would like to share with you for the record a letter
to the subcommittee requesting $50 million for the IMLS Office of
Museum Services signed by 18 of your Senate colleagues. Thank you once
again for the opportunity to submit this testimony.
______

United States Senate,
Washington, DC, March 29, 2012.
Hon. Tom Harkin,
Chairman, Senate Appropriations Subcommittee on Labor, Health and Human
Services, and Education and Related Agencies, Washington, DC.
Hon. Richard C. Shelby,
Ranking Member, Senate Appropriations Subcommittee on Labor, Health and
Human Services, and Education and Related Agencies, Washington,
DC.
Dear Chairman Harkin and Ranking Member Shelby: We are writing to
thank you for your support for the Institute of Museum and Library
Services (IMLS) Office of Museum Services (OMS) and to urge the
subcommittee to support $50 million for OMS in the fiscal year 2013
Labor, Health and Human Services and Education Appropriations bill.
Museums are economic engines--spending more than $20 billion in
their communities, employing 400,000 Americans, and spurring local
tourism. Museums are also fostering the kind of critical thinking
skills and innovation that are necessary to keep our Nation competitive
in the global economy.
The demand for museum services is greater than ever. At a time when
school resources arc strained and many families cannot afford to travel
or make ends meet, museums are working overtime to fill the gaps--
providing more than 18 million instructional hours to schoolchildren,
bringing art and cultural heritage, dynamic exhibitions and living
specimens into local communities, encouraging national service and
volunteerism, collecting food and other resources for needy families
and individuals, and offering free or reduced admission to military
families. Unfortunately, museums are struggling significantly in these
difficult economic times. They are being forced to cut back on hours,
educational programming, community services, and jobs. And according to
the 2005 Heritage Health Index, at least 190 million artifacts are at
risk, suffering from light damage and harmful and insecure storage
conditions.
The Institute of Museum and Library Services--the primary Federal
agency that supports our Nation's 17,500 museums--was unanimously
reauthorized in 2010 by both the House and Senate. The agency is highly
accountable, and its competitive, peer-reviewed grants serve every
State. Although the agency has been successful in creating and
supporting advancements in areas such as technology, lifelong community
learning and conservation and preservation efforts, only a small
fraction of the Nation's museums are currently being reached, and many
highly rated grant applications go unfunded each year. The re-
authorization contained several provisions to further support museums,
particularly at the State level, but much of the recently authorized
activities cannot be accomplished without meaningful funding.
We therefore recommend a critical investment in our Nation's
museums. Specifically, we are requesting $50 million for IMLS Office of
Museum Services for fiscal year 2013. Again, we appreciate the
subcommittee's prior support for OMS and request this investment to
strengthen and sustain the work of our Nation's museums.
Sincerely,
Kirsten E. Gillibrand; Daniel K. Akaka; Max Baucus;
Jeff Bingaman; Richard Blumenthal; Benjamin
L. Cardin; Richard J. Durbin; Tim Johnson;
Frank R. Lautenberg; Patrick J. Leahy;
Barbara A. Mikulski; Jack Reed; Bernie
Sanders; Charles E. Schumer; Jeanne
Shaheen; Debbie Stabenow; Tom Udall;
Sheldon Whitehouse.
U.S. Senators.
______

Prepared Statement of the Association of American Medical Colleges
The Association of American Medical Colleges (AAMC) is a not-for-
profit association representing all 137 accredited United States and 17
accredited Canadian medical schools; nearly 400 major teaching
hospitals and health systems; and nearly 90 academic and scientific
societies. Through these institutions and organizations, the AAMC
represents 128,000 faculty members, 75,000 medical students, and
110,000 resident physicians.
The association appreciates the opportunity to address four Federal
priorities that play essential roles in assisting medical schools and
teaching hospitals to fulfill their missions of education, research,
and patient care: the National Institutes of Health (NIH); the Agency
for Healthcare Research and Quality (AHRQ); health professions
education funding through the Health Resources and Services
Administration (HRSA)'s Bureau of Health Professions; and student aid
through the Department of Education and HRSA's National Health Service
Corps. The AAMC appreciates the Subcommittee's longstanding, bipartisan
efforts to strengthen these programs.
National Institutes of Health.--The NIH is one of the Federal
Government's greatest achievements. Congress' long-standing support for
medical research through the NIH has created a scientific enterprise
that is the envy of the world and has contributed greatly to improving
the health and well-being of all Americans--indeed of all humankind.
The foundation of scientific knowledge built through NIH-funded
research drives medical innovation that improves health through new and
better diagnostics, improved prevention strategies, and more effective
treatments.
The AAMC supports the recommendation of the Ad Hoc Group for
Medical Research that the Subcommittee recognize NIH as a critical
national priority by providing at least $32 billion in funding in its
fiscal year 2013 Labor-HHS-Education appropriations bill. This funding
recommendation represents the minimum investment necessary to avoid
further loss of promising research and at the same time allows the
NIH's budget to keep pace with biomedical inflation.
More than 83 percent of NIH research funding is awarded to more
than 3,000 research institutions in every State; at least half of this
funding supports life-saving research at America's medical schools and
teaching hospitals. This successful partnership not only lays the
foundation for improved health and quality of life, but also
strengthens the nation's long-term economy.
The AAMC opposes the administration's proposal to retain at
Executive Level II of the Federal Executive Pay Scale the limit on
salaries that can be drawn from NIH extramural awards. The reduction in
the limit in the fiscal year 2012 appropriation comes at a time when
medical schools' and teaching hospitals' discretionary funds from
clinical revenues and other sources are increasingly constrained and
less available to invest in research. As institutions and departments
divert funds to compensate for the reduction in the salary limit, they
will have less funding for critical activities such as bridge funding
to investigators who may be between grants and seed grants and start-up
packages for young investigators. The lower salary cap will
disproportionately affect physician investigators, who will be forced
to make up salaries from clinical revenues, thus leaving less time for
research. This may serve as a deterrent to their recruitment into
research careers. The AAMC urges the Subcommittee to restore the limit
to Executive Level I, as it was for every year since fiscal year 2001.
Agency for Healthcare Research and Quality.--Complementing the
medical research supported by NIH, AHRQ sponsors health services
research designed to improve the quality of healthcare, decrease
healthcare costs, and provide access to essential healthcare services
by translating research into measurable improvements in the healthcare
system. The AAMC firmly believes in the value of health services
research as the Nation continues to strive to provide high-quality,
efficient, and cost-effective healthcare to all of its citizens. The
AAMC joins the Friends of AHRQ in recommending $400 million in base
discretionary funding for the agency in fiscal year 2013.
As the lead Federal agency to improve healthcare quality, AHRQ's
overall mission is to support research and disseminate information that
improves the delivery of healthcare by identifying evidence-based
medical practices and procedures. The Friends of AHRQ funding
recommendation will allow AHRQ to continue to support the full spectrum
of research portfolios at the agency, from patient safety to patient-
centered health research and other valuable research initiatives. These
research findings will better guide and enhance consumer and clinical
decisionmaking, provide improved healthcare services, and promote
efficiency in the organization of public and private systems of
healthcare delivery.
Health Professions Funding.--HRSA's Title VII health professions
and Title VIII nursing education programs are the only Federal programs
designed to improve the supply, distribution, and diversity of the
Nation's healthcare workforce. Through loans, loan guarantees, and
scholarships to students, and grants and contracts to academic
institutions and nonprofit organizations, the Title VII and Title VIII
programs fill the gaps in the supply of health professionals not met by
traditional market forces. The AAMC joins the Health Professions and
Nursing Education Coalition (HPNEC) in recommending $520 million for
these important workforce programs in fiscal year 2013.
This funding recommendation is necessary to ensure continuation of
all Title VII and Title VIII programs at least at fiscal year 2012 base
discretionary levels, while also supporting promising initiatives such
as the Pediatric Subspecialty Loan Repayment program and other efforts
to bolster the workforce. The AAMC strongly objects to the
administration's proposal to eliminate the Area Health Education
Centers (AHEC), which in 2010 alone, trained more than 50,000 health
professions students in community-based settings, and the Health
Careers Opportunity Program (HCOP), which research shows has helped
students from disadvantaged backgrounds achieve higher grade point
averages and matriculate into health professions programs. Continued
support for these and the full spectrum of Title VII programs is
essential to prepare our next generation of medical professionals to
adapt to the evolving healthcare needs of the changing population.
In addition to funding for Title VII and Title VIII, HRSA's Bureau
of Health Professions also supports the Children's Hospitals Graduate
Medical Education program. This program provides critical Federal
graduate medical education support for children's hospitals to prepare
the future primary care workforce for our Nation's children and for
pediatric specialty care. The AAMC has serious concerns about the
President's plan to drastically reduce support for this essential
program in fiscal year 2013. At a time when the Nation faces a critical
doctor shortage, any cuts to funding that supports physician training
will have serious repercussions for Americans' health. We strongly urge
restoration to the program's fiscal year 2010 level of $317.5 million
in fiscal year 2013.
Student Aid and the National Health Service Corps (NHSC).--The AAMC
urges the committee to sustain student loan and repayment programs for
graduate and professional students at the Department of Education. The
average graduating debt of medical students currently exceeds $160,000,
and typical repayment can range from $300,000 to $450,000. The Budget
Control Act (BCA, Public Law 112-25) adds another $10,000 to $20,000 to
total repayment as a result of eliminating graduate and professional
in-school subsidies, effective July 1, 2012.
The AAMC opposes any rescissions from the National Health Service
Corps (NHSC) Fund created under the Affordable Care Act (ACA, Public
Law 111-142 and Public Law 111-152). The steady, sustained, and certain
growth established by this mandatory funding for the NHSC has resulted
in program expansion and innovative pilots such as the Student to
Service (S2S) Loan Repayment Program that incentivizes fourth year
medical students to practice primary care in underserved areas after
residency training. The AAMC further requests that any expansion of
NHSC eligible disciplines or specialties be accompanied by a
commensurate increase in NHSC appropriations so as to prevent a
reduction of awards to current eligible health professions.
Furthermore, the AAMC believes that such changes are best tested
through the NHSC State Loan Repayment Program (SLRP), and that funds
provided for this program should allow the States to define specialty
and geographic shortages.
Once again, the AAMC appreciates the opportunity to submit this
statement for the record and looks forward to working with the
Subcommittee as it prepares its fiscal year 2013 spending bill.
______

Prepared Statement of the American Association of Nurse Anesthetists

FISCAL YEAR 2013 APPROPRIATIONS REQUEST SUMMARY
----------------------------------------------------------------------------------------------------------------
Fiscal year--
------------------------------------------------------------- AANA fiscal year
2011 actual 2012 actual 2013 budget 2013 request
----------------------------------------------------------------------------------------------------------------
HHS/HRSA/BHPr Title VIII Awards amounted to Grant allocations Grant allocations $4 million for
Advanced Education Nursing, approx. $3.5 not specified. not specified. nurse anesthesia
Nurse Anesthetist Education million. education
Reserve.
Total for Advanced Education $64.046 million for $63.925 million $83.925 million $83.925 million
Nursing, from Title VIII. Advanced Education for Advanced for Advanced for Advanced
Nursing. Education Nursing. Education Nursing. Education Nursing
Title VIII HRSA BHPr Nursing $242,387,000....... $231,948,000...... $251,099,000...... $251,099,000
Education Programs.
CDC/Division of Healthcare ................... .................. Maintain level Maintain level
Quality and Promotion. funding. funding
----------------------------------------------------------------------------------------------------------------

The American Association of Nurse Anesthetists (AANA) is the
professional association for the 44,000 Certified Registered Nurse
Anesthetists (CRNAs) and student nurse anesthetists practicing today.
CRNAs deliver approximately 32 million anesthetics 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, and providing acute and chronic pain
management services. CRNAs provide anesthesia for a wide variety of
surgical cases and ensure that rural medical facilities have access to
obstetrical, surgical, and trauma stabilization, and pain management
capabilities. In addition, CRNAs provide the lion's share of anesthesia
care required by our U.S. Armed Forces through active duty and the
reserves. Nurse anesthetists are experienced and highly trained
anesthesia professionals whose record of patient safety in the field of
anesthesia was bolstered by the Institute of Medicine report in 2000,
which found that anesthesia is 50 times safer than in the 1980s. (Kohn
L, Corrigan J, Donaldson M, ed. To Err is Human. Institute of Medicine,
National Academy Press, Washington, DC, 2000.) Nurse anesthetists
continue to set for themselves the most rigorous continuing education
and re-certification requirements in the field of anesthesia. Relative
anesthesia patient safety outcomes are comparable among nurse
anesthetists and anesthesiologists, with a 2010 Health Affairs article,
``No Harm Found When Nurse Anesthetists Work without Supervision by
Physicians'' finding that adverse outcomes were no more prevalent in
States that opted out of the Medicare physician supervision requirement
of nurse anesthetists than those States that didn't opt-out (Dulisse B,
Cromwell J. No Harm Found When Nurse Anesthetists Work Without
Supervision By Physicians. Health Aff. 2010;29(8):1469-1475).
In addition, a study published in Nursing Research indicates that
obstetrical anesthesia, whether provided by CRNAs or anesthesiologists,
is extremely safe, and there is no difference in safety between
hospitals that use only CRNAs compared with those that use only
anesthesiologists. (Simonson, Daniel C et al. Anesthesia Staffing and
Anesthetic Complications During Cesarean Delivery: A Retrospective
Analysis. Nursing Research, Vol. 56, No. 1, pp. 9-17. January/February
2007).
Importance of Title VIII Nurse Anesthesia Education Funding
The nurse anesthesia profession's chief request of the Subcommittee
is for $4 million to be reserved for nurse anesthesia education and
$83.925 million for advanced education nursing from the Title VIII
program. We feel that this funding request is well justified, as we
know that more baby boomers retiring will not only reduce our nurse
workforce from retirements but will increase the demand from an aging
population requiring care. The Title VIII program is an effective means
to help address the nurse anesthesia workforce demand.
Increasing funding for advanced education nursing from $63.93
million in fiscal year 2012 to $83.925 million is necessary to meet the
continuing demand for nursing faculty and other advanced education
nursing services throughout the United States. The program provides for
competitive grants that help enhance advanced nursing education and
practice and traineeships for individuals in advanced nursing education
programs.
There continues to be high demand for CRNA workforce in clinical
and educational settings. Between 2000-2010, the number of nurse
anesthesia educational program graduates doubled, with the Council on
Certification of Nurse Anesthetists (CCNA) reporting 1,075 graduates in
2000 and 2,375 graduates in 2010. This growth is leveling off somewhat,
but is expected to continue. The demand for nurse anesthetists
continues to rise. The problem is not that our 112 accredited programs
of nurse anesthesia are failing to attract qualified applicants. It is
that they have to turn them away by the hundreds. The AANA has been
working with the 112 accredited nurse anesthesia educational programs
to increase the number of qualified graduates. To truly meet the nurse
anesthesia workforce challenge, the capacity and number of CRNA schools
must continue to grow. With the help of competitively awarded grants
supported by Title VIII funding, the nurse anesthesia profession is
making significant progress, expanding both the number of clinical
practice sites and the number of graduates.
The AANA is pleased to report that this progress is extremely cost-
effective from the standpoint of Federal funding. Anesthesia can be
provided by nurse anesthetists, physician anesthesiologists, or by
CRNAs and anesthesiologists working together. As mentioned earlier, the
Health Affairs study by Dulisse and Cromwell indicates the safety of
CRNA care. Another study published recently in Nursing Economic$
indicates that costs of educating and training a CRNA from
undergraduate education through graduate education is roughly 15
percent of the cost of educating and training an anesthesiologist
(Hogan, PF, Seifert RF, Moore CS, Simonson BE, Cost Effectiveness
Analysis of Anesthesia Providers, Nurs Econ. 2010;28(3): 150-169.) This
study also found that among anesthesia delivery models, CRNAs acting
independently provide anesthesia services at the lowest economic cost;
costs for this model are 25 percent less than the second lowest cost
model in which an anesthesiologist supervises six CRNAs. Nurse
anesthesia education represents a significant educational cost-benefit
for supporting CRNA educational programs with Federal dollars vs.
supporting other, more costly, models of anesthesia education.
We believe the Subcommittee should allocate $4 million for nurse
anesthesia education for several reasons. First, as this testimony has
documented, the funding is cost-effective and needed. Second, this
particular funding meets a distinct need not met elsewhere; 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. Third, this funding meets an
overall objective to increase access to quality healthcare in medically
underserved America.
Title VIII Funding for Strengthening the Nursing Workforce
The AANA joins The Nursing Community and the Americans for Nursing
Shortage Relief (ANSR) Alliance in support of the Subcommittee
providing a total of $251.099 million in fiscal year 2013 for nursing
shortage relief through Title VIII. AANA asks that of the $251.099
million, $83.925 million go to Advanced Education Nursing and $4
million go to nurse anesthesia. The AANA appreciates the support for
nurse education funding in fiscal year 2012 from this Subcommittee and
from the Congress. In the interest of patients, we ask Congress to
invest in CRNA and nursing educational funding programs. Quality
anesthesia care provided by CRNAs saves lives, promotes quality of
life, and makes fiscal sense. This Federal support for Title VIII and
advanced education nurses will improve patient access to quality
services and strengthen the Nation's healthcare delivery system.
Safe Injection Practices
As a leader in patient safety, the AANA has been playing a vigorous
role in the development and projects of the Safe Injection Practices
Coalition, intended to reduce and eventually eliminate the incidence of
healthcare facility acquired infections. Provider education and
awareness, detection, tracking and response are all extremely important
to preventing healthcare-associated infections. In the interest of
promoting safe injection practice and reducing the incidence of
healthcare facility acquired infections, we recommend the Committee
maintain its level of funding for CDC's Division of Healthcare Quality
and Promotion so they can address outbreaks and promote innovative ways
to adhere to injection safety and infection control guidelines. We also
hope the committee will support the CDC's efforts around provider
education and patient awareness activities, as this issue transcends
provider type and it's important to educate all types of providers and
patients alike.
______

Prepared Statement of the American Academy of Ophthalmology
executive summary
The American Academy of Ophthalmology requests fiscal year 2013 NIH
funding of at least $32 billion, which reflects a $1.38 billion, or 4.5
percent increase over fiscal year 2012, which consists of biomedical
inflation of 2.8 percent plus modest growth, and is necessary since:
--After nearly a decade of budgets below biomedical inflation, NIH's
inflation-adjusted funding is close to 20 percent lower than
fiscal year 2003.
--Even before adjusting for inflation, enacted spending bills in
recent years have cut the NIH budget. The looming sequestration
mandated by the Budget Control Act threatens further cuts,
estimated by the Congressional Budget Office (CBO) at 8 percent
in fiscal year 2013 alone.
NIH, our Nation's biomedical research enterprise, is unique in
that:
--Its basic and clinical research has helped to understand the basis
of disease, thereby resulting in innovations in healthcare to
save and improve lives.
--Its research serves an irreplaceable role that the private sector
could not duplicate.
--It has been shown through several studies to be a major force in
the economic health of communities across the Nation. The
latest United for Medical Research report estimates that NIH
funding supported more than 432,000 jobs in 2011, directly or
indirectly, and generated more than $62.1 billion in economic
activity.
The American Academy of Ophthalmology requests National Eye
Institute (NEI) funding at $730 million, commensurate with the overall
NIH funding increase, especially since:
--Fiscal year 2012 NEI funding of $702 million reflects little more
than 1 percent of the $68 billion annual cost of eye disease
and vision impairment in the United States.
--NEI has funded breakthrough research ranging from determining the
genetic basis of eye disease to developing treatments that save
and restore sight.
--In 2009, Congress spoke volumes in passing S. Res. 209 and H. Res.
366, which designated 2010-2020 as The Decade of Vision, in
which the majority of 78 million baby boomers will turn 65
years of age and face greatest risk of aging eye disease. A
cut, level funding, or even an inflationary increase is not
sufficient for NEI to meet the vision challenges presented by
the ``Silver Tsunami.''
congress must improve upon the president's fiscal year 2013 request,
since it cuts nei funding by $8.86 million, or 1.2 percent below fiscal
year 2012, which results in funding close to the base fiscal year 2009
level
Although the President's budget request level-funds NIH, it
proposes to cut NEI by $8.8 million. Although most of this cut reflects
the NIH Office of AIDS Research pulling its funding from the NEI's
Studies of Ocular Implications of AIDS (SOCA) clinical trials, which
established the efficacy of combination antiviral drug therapy in
treating cytomegalorvirus (CMV) retinitis, the resulting total NEI
funding of $693 million reflects a funding level just slightly higher
than that in fiscal year 2009, prior to the addition of American
Recovery and Reinvestment Act (ARRA) funding. Although the NEI's
Congressional Justification (CJ) notes that this funding level will
still enable NEI to increase Research Project Grant (RPG) funding by $3
million, it will still cut training programs and Research and
Development contracts.
NEI is already facing enormous challenges in this Decade of Vision
2010-2020. Each day, from 2011 to 2029, 10,000 citizens will turn 65
and be at greatest risk for eye disease, the fast growing African-
American and Hispanic populations will experience a disproportionately
higher incidence of eye disease, and the epidemic of obesity will
significantly increase the incidence of diabetic retinopathy.
The Academy requests NEI funding at $730 million, reflecting
biomedical inflation plus modest growth commensurate with that of NIH
overall, since our Nation's investment in vision health is an
investment in overall health. NEI's breakthrough research is a cost-
effective investment, since it is leading to treatments and therapies
that can ultimately delay, save, and prevent health expenditures,
especially those associated with the Medicare and Medicaid programs. It
can also increase productivity, help individuals to maintain their
independence, and generally improve the quality of life, especially
since vision loss is associated with increased depression and
accelerated mortality.
The very health of the vision research community is also at stake
with a decrease in NEI funding. Not only will funding for new
investigators be at risk, but also that of seasoned investigators,
which threatens the continuity of research and the retention of trained
staff, while making institutions more reliant on bridge and
philanthropic funding. If an institution needs to let staff go, that
usually means a highly-trained person is lost to another area of
research or an institution in another State, or even another country.
fiscal year 2013 nih funding of at least $32 billion, nei at $730
million lets nei build upon its past record of basic and translational
research
In late June 2010, NIH Director Francis Collins, M.D., Ph.D.
recognized NEI's leadership in translational research at an NEI-
sponsored Translational Research and Vision Conference. Just 2 weeks
earlier, Dr. Collins testified before the House Energy and Commerce
Committee, stating that:

``Twenty years ago we could do little to prevent or treat AMD.
Today, because of new treatments and procedures based on NIH/NEI
research, 1.3 million Americans at risk for severe vision loss from AMD
over the next 5 years can receive potentially sight-saving therapies.''

With fiscal year 2013 funding at $730 million, NEI can build upon
its past research in several different areas, including:
Genetic Basis of Eye Disease.--As NEI Director Paul Sieving, M.D.,
Ph.D. has stated, of the more than 2,000 genes identified to date, more
than 500, or one-quarter, are associated with both common and rare eye
diseases. By further understanding the genetic basis of eye disease,
NEI can study underlying disease mechanisms and develop appropriate
diagnostic and therapeutic applications for such blinding eye diseases
as AMD, glaucoma, and retinitis pigmentosa (RP).
--NEI's AMD Gene Consortium, which consolidates 15 international
Genome Wide Association Studies (GWAS) representing over 8,000
patients, has validated 8 previously known gene variants and
identified 19 new variants.
--NEI's Glaucoma Human Genetics Collaboration (NEIGHBOR) has
identified the first risk variant in a gene thought to play a
role in the development of the optic nerve head, the
degeneration of which leads to glaucoma and loss of peripheral
vision, and then ultimately blindness.
--The NEI-led human gene therapy clinical trial for neurodegenerative
eye disease Leber Congenital Amaurosis (LCA) has resulted to
date in 15 patients being treated and experiencing visual
improvement. NEI's pioneering work, as well as subsequent
refinement of gene therapy techniques, is enabling further
research into ocular gene therapy through the launch of NEI-
funded clinical trials for AMD, choroideremia, Stargardt
disease, and Usher Syndrome. The latter three neurodegenerative
diseases occur in early childhood and progressively destroy the
retina, leading to vision loss and blindness and resulting in a
lifetime of direct medical and indirect support costs. NEI is
also funding pre-clinical safety trials for human gene therapy
for RP, juvenile retinoschisis (``splitting'' of the retina,
resulting in vision loss), and achromatopsia (affecting color
perception and visual acuity).
Diabetic Eye Disease.--NEI's Diabetic Retinopathy Clinical Research
(DRCR) Network found that laser treatment for diabetic macular edema,
when combined with anti-angiogenic drug treatment, is more effective
than laser treatment alone and will revolutionize the standard of care
in place the past 25 years. With the National Institute for Diabetes
and Digestive and Kidney Diseases (NIDDK) leading a new NIH strategic
plan to combat diabetes, NEI's research through its various diabetic
eye disease networks over the past 40 years--in partnership with
NIDDK--will be more important than ever. For example, about 1-in-5
individuals in the NEI-funded Los Angeles Latino Eye Study (LALES) was
newly diagnosed with diabetes during the study, and of those newly
diagnosed, 23 percent were found to already have diabetic retinopathy.
blindness and vision loss is a growing public health problem that
individuals fear and would trade years of life to avoid
The NEI estimates that more than 38 million Americans age 40 and
older experience blindness, low vision, or an age-related eye disease
such as AMD, glaucoma, diabetic retinopathy, or cataracts. This is
expected to grow to more than 50 million Americans by year 2020.
Although the NEI estimates that the current annual cost of vision
impairment and eye disease to the United States is $68 billion, this
number does not fully quantify the impact of indirect healthcare costs,
lost productivity, reduced independence, diminished quality of life,
increased depression, and accelerated mortality. NEI's fiscal year 2012
funding of $702 million reflects just a little more than 1 percent of
this annual costs of eye disease. The continuum of vision loss presents
a major public health problem, as well as a significant financial
challenge to the public and private sectors.
Vision loss also presents a real fear to most citizens:
--In public opinion polls over the past 40 years, Americans have
consistently identified fear of vision loss as second only to
fear of cancer.
--NEI's Survey of Public Knowledge, Attitudes, and Practices Related
to Eye Health and Disease reported that 71 percent of
respondents indicated that a loss of their eyesight would rate
as a ``10'' on a scale of 1 to 10, meaning that it would have
the greatest impact on their day-to-day life.
--In patients with diabetes, going blind or experiencing other vision
loss rank among the top four concerns about the disease. These
patients are so concerned about vision loss diminishing their
quality of life that those with nearly perfect vision (20/20 to
20/25) would be willing to trade 15 percent of their remaining
life for ``perfect vision,'' while those with moderate
impairment (20/30 to 20/100) would be willing to trade 22
percent of their remaining life for perfect vision. Patients
who are legally blind from diabetes (20/200 to 20/400) would be
willing to trade 36 percent of their remaining life to regain
perfect vision.
The Academy urges Congress to fund the NIH and NEI at funding
levels of at least $32 billion and $730 million, respectively, which
will ensure the momentum of breakthrough vision research and the
retention of trained vision researchers.
about the american academy of ophthalmology
The American Academy of Ophthalmology is the largest national
membership association of Eye M.D.s. Eye M.D.s are ophthalmologists,
medical and osteopathic doctors who provide comprehensive eye care,
including medical, surgical and optical care. More than 90 percent of
practicing U.S. Eye M.D.s are Academy members, and the Academy has more
than 7,000 international members.
______

Prepared Statement of the American Academy of Pediatrics
The American Academy of Pediatrics (AAP), a nonprofit professional
organization of 60,000 primary care pediatricians, pediatric medical
subspecialists, and pediatric surgical specialists dedicated to the
health, safety, and well-being of infants, children, adolescents, and
young adults, appreciates the opportunity to submit this statement for
the record in support of strong Federal investments in children's
health in fiscal year 2013 and beyond. AAP urges all Members of
Congress to put children first when considering short and long-term
Federal spending decisions.
Every adult was once a child. Many adult diseases have their
origins in childhood. Early and continued investments in our children's
health are needed to prevent obesity, heart disease, substance use, and
other chronic conditions that threaten America's health and fiscal
solvency. As clinicians we not only diagnose and treat our patients, we
also promote preventive interventions to improve overall health.
Likewise, as policymakers, you have an integral role in ensuring the
health of future generations through adequate and sustained funding of
vital Federal programs.
The economic strength and prosperity of our Nation rests largely on
the health and well-being of our children. Therefore, the Nation's
pediatricians insist that Congress prioritize funding for programs that
support the healthy development of children and adolescents.
America's children deserve better
Babies born in the United States are less likely to survive until
their first birthday than those in 30 other industrialized nations.
Twenty-two percent of children in the United States now live in
poverty. Many children suffer from food insecurity, unstable housing,
family dysfunction, abuse and neglect. Such adverse childhood
experiences are linked with ``toxic stress,'' a biologic phenomenon
associated with profound and irreversible changes in brain anatomy and
chemistry that have been implicated in the development of health-
threatening behaviors and medical complications later in life including
drug use, obesity, and altered immune function. Adults affected by such
adverse childhood experiences are more likely to have experienced
school failure, gang membership, unemployment, violent crime, and
incarceration.
Of the world's richest 21 nations, the United States comes in dead
last in terms of overall health and safety of its children due to poor
indicators on child health at birth, infant mortality rates, prevalence
of low birth weight, child immunization rates for children aged 12 to
23 months, and deaths from accidents or injuries among people aged 0 to
19 years. America's current generation of children is at risk of having
shorter life expectancies than their parents. This is unacceptable.
America's children deserve better. As a Nation we must rise above
partisan politics and reclaim the health and well-being of our children
through strong Federal investments in programs that promote and protect
the health of all children.
Children's healthcare is not the cost driver of overall healthcare
spending
The United States continues to spend less on our children's health,
education, and general welfare than most other developed nations in the
world. Children under age 18 represent 30 percent of the total United
States population, yet healthcare services for infants, children, and
young adults are only 12 percent of total annual healthcare spending.
Children, including those with special healthcare needs, make up more
than 50 percent of all Medicaid recipients, but account for less than
25 percent of Medicaid costs.
By contrast, currently over two-thirds of Medicare expenditures are
for beneficiaries with five or more chronic conditions, conditions like
diabetes, arthritis, and hypertension that are largely preventable over
the course of a lifetime. Strong and continued investments during
childhood are critical to curbing the onset of chronic conditions that
are growing healthcare costs. Proposed cuts to prevention and public
health initiatives, community health programs, and child safety net
services are counterproductive to efforts to reduce Government spending
and control the deficit in the long-term.
Children's programs are cost-effective and improve our Nation's health
and economy
Every $1 spent on childhood vaccines in the Section 317
immunization program saves the healthcare system $16.50 in future
medical costs. Every $1 spent on preventative services for a pregnant
woman in the Special Supplemental Nutrition Program for Women, Infants,
and Children saves Medicaid up to $4.20 by reducing the risk of pre-
term birth and its associated costs. Every $1 spent on high-quality
home visiting programs saves up to $5.70 as a result of improved
prenatal health, decreased mental health and criminal justice costs,
and fewer children suffering from abuse and neglect. Our Nation's
sickest and most vulnerable children rely on Federal programs like
these to support their physical and mental health needs. Reducing
funding for vital child health programs during a time when many
families are still struggling financially will disproportionately hurt
children.
The Administration for Children and Families, Centers for Disease
Control and Prevention, Health Resources and Services Administration,
and other agencies within the Department of Health and Human Services
and the Department of Education provide essential services, research,
and surveillance that help our Nation's children grow into healthy and
productive citizens. Federal and State partnerships like the Title V
Maternal and Child Health block grants and Section 317 immunization
program support families by providing newborn screenings,
immunizations, preventive health services and medical care that
children need to be healthy.
Devoting adequate resources to Federal health programs helps ensure
children have safe and healthy food at home and school, homes and
communities free of environmental toxins, and disaster preparedness and
response systems that address their unique health needs. Federal funds
support critical programs that address pressing public health
challenges including: efforts to prevent infant mortality and birth
defects; healthy child development; antimicrobial resistance and
infectious diseases; emergency medical services for children; mental
health and substance abuse prevention; tobacco prevention and
cessation; unintentional injury and violence prevention; child
maltreatment prevention; childhood obesity; environmental and chemical
exposures; poison control; teen pregnancy prevention and family
planning; health promotion in schools; and medical research and
innovation.
Meeting our children's health needs also requires a robust
pediatric workforce. Children are not just little adults.
Pediatricians, including medical and surgical specialists, are trained
to diagnose and treat the unique healthcare needs of children and
adolescents. Unlike the adult population, our Nation currently faces a
shortage of pediatric subspecialists, resulting in many children with
serious acute and chronic illnesses being forced to travel long
distances--or wait several months--to see a needed pediatric
subspecialist. Federal support for pediatric workforce programs--Public
Health Service Act Title VII health professions programs, Children's
Hospital Graduate Medical Education Program and the Pediatric
Subspecialty Loan Repayment Program--is crucial to building the
necessary supply of pediatricians to ensure all children, regardless of
where they live or their insurance status, have access to timely and
appropriate healthcare.
Healthier children, healthier future
On behalf of the 75 million American children and their families
that we serve and treat, the Nation's pediatricians expect Congress to
respond to mounting evidence that child health has life-long impacts
and put children first during appropriations negotiations. Investing in
children is not only the right thing to do for the long-term physical,
mental, and emotional health of the population, but is imperative for
the Nation's long-term fiscal health as well. At a time when States are
facing unprecedented challenges with dwindling budgets yet rising
demand for health services, Federal investments in the public health
infrastructure could not be more important. Federal support for
children's health programs, such as early brain and child development,
parenting and health education, and preventive health services, will
yield high returns for the American economy.
We fully recognize the Nation's fiscal challenges and respect that
difficult budgetary decisions must be made; however, we do not support
funding decisions made at the expense of the health and welfare of
children and families. Rather, focus on the long-term needs of children
and adolescents will ensure that the United States can compete in the
modern, highly educated global marketplace. Strong and sustained
financial investments in children's healthcare, research, and
prevention programs will help keep our children healthy and pay
extraordinary dividends for years to come.
The American Academy of Pediatrics looks forward to working with
Members of Congress to prioritize the health of our Nation's children
in fiscal year 2013 and beyond. If we may be of further assistance
please contact the AAP Department of Federal Affairs at 202-347-8600 or
[email protected]. Thank you for your consideration.
______

Prepared Statement of AcademyHealth
AcademyHealth is pleased to offer this testimony regarding the role
of health services research in improving our Nation's health and the
performance of the healthcare and public health systems.
AcademyHealth's mission is to support research that leads to
accessible, high value, high-quality healthcare, reduces disparities,
and improves health. We represent the interests of more than 4,000
scientists and policy experts and 160 organizations that produce and
use research to improve health and healthcare. We advocate for the
funding to support health services research; a robust environment to
produce this research; and its more widespread dissemination and use.
Health services research studies how to make the healthcare and
public health systems work better and deliver improved outcomes for
more people, at greater value. These scientific findings improve health
systems by informing patient and healthcare provider choices; enhancing
the quality, efficiency, and value of the care patients receive;
improving patients' access to care, and supporting efficient community
wide systems. Health services research both uncovers critical
challenges confronting our Nation's healthcare system, and seeks ways
to address them.
Finding new ways to get the most out of every healthcare dollar is
critical to our Nation's long-term fiscal health. Like any corporation
making sure it is developing and providing high-quality products, the
Federal Government has a responsibility to get the most value out of
every taxpayer dollar it spends on Federal health programs, including
Medicare, Medicaid, Children's Health Insurance Program, and veterans'
and service members' health.
Funding for research on the quality, value, and organization of the
health system will deliver real savings for the Federal Government,
employers, insurers, and consumers. Research into the merits of
different policy options for delivery system transformation, patient-
centered quality improvement, community health, and disease prevention
offers policymakers in both the public and private sectors the
information they need to improve quality and outcomes, identify waste,
eliminate fraud, increase efficiency and value, and promote personal
choice.
Despite the positive impact health services research has had on the
U.S. healthcare system, and the potential for future improvements in
quality and value, the United States spends less than one cent of every
healthcare dollar on this research; research that can help Americans
spend their healthcare dollars more wisely and make more informed
healthcare choices.
AcademyHealth greatly appreciates the subcommittee's historic
efforts to increase the Federal investment in health services research.
We respectfully ask that the subcommittee further strengthen the
capacity of health services research to address the pressing challenges
America faces in providing access to high-quality, efficient care. The
following list summarizes AcademyHealth's fiscal year 2013 funding
recommendations for agencies that support health services research and
health data under the subcommittee's jurisdiction.
agency for healthcare research and quality
AHRQ funds health services research and healthcare improvement
programs that are transforming people's health in communities in every
State around the Nation. The science funded by AHRQ provides consumers
and their healthcare professionals with valuable evidence to make the
right healthcare decisions for themselves and their families. AHRQ's
research also provides the basis for protocols that prevent medical
errors and reduce hospital-acquired infections, and improve patient
confidence, experiences, and outcomes in hospitals, clinics, and
physician offices.
AcademyHealth joins the Friends of AHRQ--an alliance of more than
250 health professional, research, consumer, and employer organizations
that support the agency--in recommending an overall funding level of
$400 million in base discretionary funding for AHRQ in fiscal year
2013.
In light of the need for increased funding of health services
research, AcademyHealth is concerned about the President's use of the
Patient-Centered Outcomes Research (PCOR) Trust Fund transfer to
supplant AHRQ's discretionary budget. The PCOR Trust Fund transfer was
intended to supplement AHRQ's base discretionary budget. In the
President's fiscal year 2013 budget request, however, $62 million from
the PCOR Fund transfer is used to supplant AHRQ's existing programs.
This de facto 10 percent funding cut further compromises AHRQ's ability
to achieve its statutory mission: generating the broad evidence base on
healthcare quality, costs, and access necessary to build a high-
quality, high-value healthcare system.
centers for disease control and prevention
The National Center for Health Statistics (NCHS) is the Nation's
principal health statistics agency. Housed within the Centers for
Disease Control and Prevention (CDC), it provides critical data on all
aspects of our healthcare system through data cooperatives and surveys
that serve as a gold standard for data collection around the world.
AcademyHealth appreciates the subcommittee's leadership in securing
steady and sustained funding increases for NCHS in recent years. Such
efforts have allowed NCHS to reinstate some data collection and quality
control efforts, continue the collection of vital statistics, and
enhanced the agency's ability to modernize surveys to reflect changes
in demography, geography, and health delivery.
We join the Friends of NCHS--a coalition of more than 250 health
professional, research, consumer, industry, and employer organizations
that support the agency--in endorsing the President's fiscal year 2013
request of $162 million in base discretionary funding, to build on your
previous investments and put the agency on track to become a fully
functioning, 21st century, national statistical agency.
The Affordable Care Act recognizes the need for linking the medical
care and public health delivery systems by authorizing a new CDC
research program to identify effective strategies for organizing,
financing, and delivering public health services in real-world
community settings. AcademyHealth joins the CDC Coalition in seeking
$7.8 billion for CDC in fiscal year 2013, and seeks new funding for
public health services and systems research.
national institutes of health
NIH spends approximately $1 billion on health services research
annually--roughly 3 percent of its entire budget--making it the largest
Federal sponsor of health services research. We join the Ad Hoc Group
for Medical Research in seeking at least $32 billion for NIH in fiscal
year 2013. This funding recommendation represents the minimum
investment necessary to avoid further loss of promising research and at
the same time allows the NIH's budget to keep pace with biomedical
inflation. AcademyHealth believes that NIH should increase the
proportion of its overall funding that goes to health services research
to ensure that discoveries from clinical trials are effectively
translated into health services. We also encourage NIH to foster
greater coordination of its health services research investment across
its institutes, and to sustain investment in its Clinical and
Translational Science Awards (CTSA) as the agency transitions to its
new National Center for Advancing Translational Sciences (NCATS). The
CTSA program enables innovative research teams to speed discovery and
advance science aimed at improving our Nation's health. The program
encourages collaboration in solving complex health and research
challenges and finding ways to turn their discoveries into practical
solutions for patients.
centers for medicare and medicaid services
Steady funding decreases for the Office of Research, Development
and Information have hindered CMS's ability to meet its statutory
requirements and conduct new research to strengthen public insurance
programs, which together cover nearly 100 million Americans and
comprise 45 percent of America's total health expenditures. As these
Federal entitlement programs continue to pose significant budget
challenges for both Federal and State governments, it is critical that
we adequately fund research to evaluate the programs' efficiency and
effectiveness and seek ways to manage their projected spending growth.
AcademyHealth supports CMS's discretionary research and development
budget to improve the effectiveness and efficiency of these programs.
In conclusion, the accomplishments of health services research
would not be possible without the leadership and support of this
subcommittee. We urge the subcommittee to accept our fiscal year 2013
funding recommendations for the Federal agencies funding health
services research and health data.
______

Prepared Statement of the Adult Congenital Heart Association
Introduction
The Adult Congenital Heart Association (ACHA)--a national not-for-
profit organization dedicated to improving the quality of life and
extending the lives of adults with congenital heart disease (CHD)--is
grateful for the opportunity to submit written testimony regarding
fiscal year 2013 funding for congenital heart research and
surveillance. We respectfully request $2 million for CHD surveillance
at the Centers for Disease Control and Prevention (CDC) as well as
additional CHD research at the National Heart, Lung and Blood Institute
(NHLBI).
Adult Congenital Heart Disease
Congenital heart defects are the most common group of birth defects
occurring in nearly 1 percent of all live births, or 40,000 babies a
year. These malformations of the heart and structures connected to the
heart either obstruct blood flow or cause it to flow in an abnormal
pattern. This abnormal heart function can be fatal if left untreated.
In fact, congenital heart defects remain the leading cause of birth
defect related infant deaths.
Many infants born with congenital heart problems require
intervention in order to survive. Intervention often includes one or
multiple open-heart surgeries; however, surgery is rarely a long-term
cure. Children born with heart defects have a significantly decreased
life expectancy. One in 10 won't survive to adulthood. Among those with
the most complex heart defects, only half will make it to age 18.
The success of childhood cardiac intervention has created a new
chronic disease--congenital heart disease (CHD). Thanks to the increase
in survival, of the over 2 million people alive today with CHD, more
than half are adults, increasing at an estimated rate of 5 percent each
year. Few congenital heart survivors are aware of their high risk of
additional problems as they age, facing high rates of neuro-cognitive
deficits, heart failure, rhythm disorders, stroke, and sudden cardiac
death, and many survivors require multiple operations throughout their
lifetime. Fifty percent of all congenital heart survivors have complex
problems for which lifelong care from congenital heart specialists is
recommended, yet less than 10 percent of adult congenital heart
patients receive recommended cardiac care. Delays in care can result in
premature death and disability. In adults, this often occurs during
prime wage-earning years.
The public health burden of CHD has yet to be fully assessed.
However, the limited available research suggests that medical costs
associated with congenital heart defects are substantial. $1.2 billion
is the estimated lifetime cost for U.S. children born in a single year
with one of four major heart defects. It is estimated that in 2009, the
hospital cost for roughly 27,000 hospital stays for children treated
primarily for CHD in the United States was nearly $1.5 billion. In the
same year, hospital costs for roughly 12,000 hospital stays of adults
treated primarily for CHD was at least $280 million. Investing in CHD
surveillance and research will improve outcomes for CHD survivors,
decreasing disability and improving productivity.
ACHA
ACHA serves and supports the more than 1 million adults with CHD,
their families and the medical community--working with them to address
the unmet needs of the long-term survivors of congenital heart defects
through education, outreach, advocacy, and promotion of ACHD research.
In order to promote life-saving research and accessible,
appropriate and quality interventions which, in turn, will reduce the
public health burden of this chronic disease, ACHA advocates for
adequate funding of CDC initiatives relating to CHD, and encourages
funding within the National Institutes of Health (NIH) for CHD
research. ACHA continues to work with Federal and State policymakers to
advance policies that will improve and prolong the lives of those
living with CHD.
ACHA is also a founding member of the Congenital Heart Public
Health Consortium (CHPHC). The CHPHC is a group of organizations
uniting resources and efforts to prevent the occurrence of CHD and
enhance and prolong the lives of those with CHD through targeted public
health interventions by enhancing and supporting the work of the member
organizations. Representatives of Federal agencies serve in an advisory
capacity. In addition to ACHA, the Alliance for Adult Research in
Congenital Cardiology, American Academy of Pediatrics, American College
of Cardiology, American Heart Association, March of Dimes Foundation,
National Birth Defects Prevention Network, and the National Congenital
Heart Coalition are all members of the CHPHC.
Federal Support for Congenital Heart Disease Research and Surveillance
Despite the prevalence and seriousness of the disease, CHD data
collection and research are limited and almost non-existent for the
adult CHD population. In 2004, the NHLBI convened a working group on
CHD, which recommended developing a research network to conduct
clinical research and establishing a national database of patients.
In March 2010, the first CHD legislation passed as part of Patient
Protection and Affordable Care Act (ACA).\1\ The ACA calls for the
creation of The National Congenital Heart Disease Surveillance System,
which will collect and analyze nationally representative, population-
based epidemiological and longitudinal data on infants, children, and
adults with CHD to improve understanding of CHD incidence, prevalence,
and disease burden and assess the public health impact of CHD. It also
authorized the NHLBI to conduct or support research on CHD diagnosis,
treatment, prevention and long-term outcomes to address the needs of
affected infants, children, teens, adults, and elderly individuals.
These provisions included in the ACA were originally in the Congenital
Heart Futures Act (H.R. 1570/S. 621, 111th Congress), which garnered
bipartisan support in both the House and Senate and was championed by
Senators Richard Durbin (D-IL) and Thad Cochran (R-MS), Representative
Gus Bilirakis (R-FL) and former Representative Zack Space (D-OH).
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\1\ Patient Protection and Affordable Care Act, Sec. 10411(b).
---------------------------------------------------------------------------
Recently, the National Center on Birth Defects and Developmental
Disabilities included preventing congenital heart defects and other
major birth defects in its recently published 2011-2015 Strategic Plan,
specifically recognizing the need for understanding the contribution of
birth defects to longer term outcomes (i.e., beyond infancy) and the
economic impact of specific birth defects.
The National Congenital Heart Disease Surveillance System at CDC
As survival improves, so does the need for population-based
surveillance across the lifespan. Funding to support the development of
the National Congenital Heart Disease Surveillance System through both
a pilot adult surveillance program, and the enhancement of the existing
birth defects surveillance system, will be instrumental in driving
research, improving interventional outcomes, improving loss to care,
and assessing healthcare burden. In turn, the National Congenital Heart
Disease Surveillance System can serve as a model for all chronic
disease states.
The current surveillance system is grossly inadequate. There are
only 14 States currently funded by the CDC to gather data on birth
defects, presenting limitations in generalizing the information across
the entire population. Thus, there are significant inconsistencies in
the methods of collection and reporting across the various State
systems, which limits the value of the data. Given the absence of
population-based data across the lifespan, the data we do have excludes
anyone diagnosed after the age of one, as well as those who are lost to
care. It is this population, those lost to care, that is of greatest
concern, and most difficult to identify. Evidence indicates that those
with CHD are at significant risk for heart failure, rhythm disorders,
stroke, and sudden cardiac death as they age, requiring ongoing
specialized medical care. For those who are lost to care, for reasons
such as limited access to affordable or appropriate care or poor
education about the need for ongoing care, they often return to the
system with preventable advanced illness and/or disability. Population-
based surveillance across the lifespan is the only method by which
these patients can be identified, and, as a result, appropriate
intervention can be planned. ACHA is currently working with the CDC to
address these concerns through the National Congenital Heart Disease
Surveillance System.
The fiscal year 2012 appropriations bill provided $2 million to the
CDC for surveillance of congenital heart defects. In February 2013, the
CDC announced a funding opportunity using these authorized funds. The
CDC states that the ``purpose of this program is to provide support
through CDC cooperative agreements for non-research activities to
develop robust, population-based estimates of the prevalence of CHDs
focusing on adolescents and adults, and better understand the survival,
healthcare utilization, and longer term outcomes of adolescents and
adults affected by CHDs. The program is a pilot and designed as a
learning collaborative effort between CDC and grantees with potentially
unique and innovative approaches to monitoring CHDs among adolescents
and adults.''
ACHA requests that Congress provide the CDC $2 million in fiscal
year 2013 to continue to support data collection to better understand
CHD prevalence and assess the public health impact of CHD. This level
of funding will support a pilot adult surveillance system and allow for
the enhancement of the existing birth defects surveillance system.
Funding of Research Related to Congenital Heart Disease at NIH
Our Nation continues to benefit from the single largest funding
source for CHD research, the NIH. Yet, as a leading chronic disease,
congenital heart research is significantly underfunded.
The NHLBI supports basic and clinical research to establish a
scientific basis for the prevention, detection, and treatment of CHD.
The Bench to Bassinet Program is a major effort launched by the NHLBI
to hasten the pace at which heart research on genetics and basic
science can be developed into new treatments across the lifespan for
people with CHD. The overall goal is to provide the structure to turn
knowledge into clinical practice, and use clinical practice to inform
basic research.
ACHA urges Congress to support the NHLBI in efforts to continue its
work with patient advocacy organizations, other NIH Institutes and
Centers, and the CDC to expand collaborative research initiatives and
other related activities targeted to the diverse lifelong needs of
individuals living with congenital heart disease.
Summary
Thank you for the opportunity to highlight this important disease
and the important work done by the CDC and NIH. We know that you face
many difficult funding decisions for fiscal year 2013 and hope that you
consider addressing the lifelong needs of those with CHD. By making an
investment in the research and surveillance of CHD, the return will be
seen through reduced healthcare costs, decreased disability and
improved productivity in a population quickly approaching 3 million.
______

Prepared Statement of the American Congress of Obstetricians and
Gynecologists
The American Congress of Obstetricians and Gynecologists,
representing 57,000 physicians and partners in women's healthcare, is
pleased to offer this statement to the Senate Committee on
Appropriations, Subcommittee on Labor, Health and Human Services, and
Education. We thank Chairman Harkin, and the entire subcommittee for
the opportunity to provide comments on some of the most important
programs to women's health. Today, the United States lags behind other
nations in healthy births, yet remains high in birth costs. ACOG's
Making Obstetrics and Maternity Safer (MOMS) initiative seeks to
improve maternal and infant outcomes through investment in all aspects
of the cycle of research, including comprehensive data collection and
surveillance, biomedical research, and translation of research into
evidence-based practice and programs delivered to women and babies, and
we urge you to make this a top priority in fiscal year 2013.
data collection and surveillance at the centers for disease control and
prevention (cdc)
In order to conduct robust research, uniform, accurate and
comprehensive data and surveillance are critical. The National Center
for Health Statistics is the Nation's principal health statistics
agency and collects State data from records like birth certificates
that give us raw, vital statistics. The birth certificate is the key to
gathering vital information about both mother and baby during pregnancy
and labor and delivery. The 2003 United States standard birth
certificate collects a wealth of knowledge in this area, yet 25 percent
of States are still not using it. States without these resources are
likely underreporting maternal and infant deaths and complications from
childbirth and causes of these deaths remains unknown. Use must be
expanded to all 50 States, ensuring that uniform, accurate data is
collected nationwide. ACOG supports the President's fiscal year 2013
budget request of $16.45 million to modernize the National Vitals
Statistics System, which would help States update their birth and death
records systems.
The Pregnancy Risk Assessment Monitoring System (PRAMS) at CDC
extends beyond vital statistics and surveys new mothers on their
experiences and attitudes during pregnancy, with questions on a range
of topics, including what their insurance covered to whether they had
stressful experiences during pregnancy, when they initiated prenatal
care, and what kinds of questions their doctor covered during prenatal
care visits. By identifying trends and patterns in maternal health,
researchers better understand indicators of preterm birth. This data
allows CDC and State health departments to identify behaviors and
environmental and health conditions that may lead to preterm births.
Only 40 States use the PRAMS surveillance system today.
National data on maternal mortality is inconsistent and incomplete
due to the lack of standardized reporting definitions and mechanisms.
To capture the accurate number of maternal deaths and plan effective
interventions, maternal mortality should be addressed through multiple,
complementary strategies. ACOG recommends that Health and Human
Services (HHS) fund States in implementing maternal mortality reviews
that would allow them to conduct regular reviews of all deaths within
the State to identify causes, factors in the communities, and
strategies to address the issues. Combined with adoption of the
recommended birth and death certificates in all States and territories,
CDC could then collect uniform data to calculate an accurate national
maternal mortality rate. Results of maternal mortality reviews will
inform research needed to identify evidence based interventions
addressing causes and factors of maternal mortality and morbidity.
ACOG urges Congress to provide $10 million to Health and Human
Services to assist States in setting up maternal mortality reviews.
ACOG also urges Congress to provide $50,000 to NIH to hold a workshop
to identify definitions for severe maternal morbidity and $100,000 to
HHS to develop a research plan to identify and monitor severe maternal
morbidity.
biomedical research at the national institutes of health (nih)
Biomedical research is critically important to understanding the
causes of prematurity and developing effective prevention and treatment
methods. Prematurity rates have increased almost 35 percent since 1981,
and cost the Nation $26 billion annually, $51,600 for every infant born
prematurely. Direct healthcare costs to employers for a premature baby
average $41,610, 15 times higher than the $2,830 for a healthy, full-
term delivery. A breakthrough study conducted by the Eunice Kennedy
Shriver National Institute for Child Health and Human Development
(NICHD) last year showed a significant reduction in preterm delivery
among women with short cervixes who are administered vaginal
progesterone. The results were especially positive in reducing births
pre-28 weeks. The results of this study are expected to save the
healthcare system $500 million a year. Additional research can help
drive down our prematurity rates further, saving dollars and lives.
Sustaining the investments at NIH is vital to achieving this goal, and
therefore ACOG supports a minimum of $32 billion for NIH in fiscal year
2013.
Adequate levels of research require a robust research workforce.
The average investigator is in his/her forties before receiving their
first NIH grant, a huge disincentive for students considering bio-
medical research as a career. Complicating matters, there is a gap
between the number of women's reproductive health researchers being
trained and the need for such research. The NICHD-coordinated Women's
Reproductive Health Research (WRHR) Career Development program seeks to
increase the number of ob-gyns conducting scientific research in
women's health in order to address this gap. To date 170 WRHR Scholars
have received faculty positions, and 7 new and competing WRHR sites
were added in 2010.
public health programs at the health resources and services
administration (hrsa) and the centers for disease control and
prevention (cdc)
Projects at HRSA and CDC are integral to translating research
findings into evidence-based practice changes in communities. Where NIH
conducts research to identify causes of preterm birth, CDC and HRSA
fund programs that provide resources to mothers to help prevent preterm
birth, and help identify factors contributing to preterm birth and poor
maternal outcomes. The Maternal Child Health Block Grant at HRSA is the
only Federal program that exclusively focuses on improving the health
of mothers and children. State and territorial health agencies and
their partners use MCH Block Grant funds to reduce infant mortality,
deliver services to children and youth with special healthcare needs,
support comprehensive prenatal and postnatal care, screen newborns for
genetic and hereditary health conditions, deliver childhood
immunizations, and prevent childhood injuries.
These early healthcare services help keep women and children
healthy, eliminating the need for later costly care. Every $1 spent on
preconception care for women with diabetes can reduce health costs by
up to $5.19 by preventing costly complications in both mothers and
babies. Every $1 spent on smoking cessation counseling for pregnant
women saves $3 in neonatal intensive care costs. The MCH block grant
has seen an almost $30 million decrease in funding in the past 5 years
alone. ACOG urges you not to cut the MCH block grant any further and
for fiscal year 2013 we request $645 million for the block grant to
maintain its current level of services.
Family planning is essential to helping ensure healthy pregnancies
and reducing the risk of preterm birth. The Title X Family Planning
Program provides services to more than 5 million low-income men and
women at more than 4,500 service delivery sites. Every $1 spent on
family planning results in a $4 savings to Medicaid. Services provided
at Title X clinics accounted for $3.4 billion in healthcare savings in
2008 alone. ACOG supports $327 million for Title X in fiscal year 2013
to sustain its level of services.
The Healthy Start Program through HRSA promotes community-based
programs that help reduce infant mortality and racial disparities in
perinatal outcomes. These programs are encouraged to use the Fetal and
Infant Mortality Review (FIMR) which brings together ob-gyn experts and
local health departments to help specifically address local issues
contributing to infant mortality. Today, more than 220 local programs
in 42 States find FIMR a powerful tool to help reduce infant mortality,
including understanding issues related to preterm delivery. For over 20
years, ACOG have partnered with the Maternal and Child Health Bureau to
sponsor the designated resource center for FIMR Programs, the National
FIMR Program. ACOG supports $.5 million for HRSA to increase the number
of Healthy Start programs that use FIMR.
The Safe Motherhood Initiative at CDC works with State health
departments to collect information on pregnancy-related deaths, track
preterm births, and improve maternal outcomes. The Initiative also
promotes preconception care, a key to reducing the risk of preterm
birth. For fiscal year 2013, we recommend a sustained funding level of
at least $44 million for the Safe Motherhood Program, and the inclusion
of a $2 million preterm birth sub-line to ensure continued support for
preterm birth research, as authorized by the PREEMIE Act.
Regional quality improvement initiatives encourage use of evidence-
based quality improvement projects in hospitals and medical practices
to reduce the rate of preterm birth. Under the Ohio Perinatal Quality
Collaborative, started in 2007 with funding from CDC, 21 OB teams in 25
hospitals have decreased scheduled deliveries between 36 and 39 weeks
gestation, in accordance with ACOG guidelines, significantly reducing
pre-term births.
Finally, ACOG is proud to partner with the Department of Health and
Human Services and the March of Dimes on Strong Start, a multi-faceted
perinatal health campaign to reduce preterm births. Strong Start
contains two strategies. The first is a public-private partnership to
reduce elective deliveries prior to 39 weeks through a public awareness
campaign and quality improvement efforts. The second is a funding
opportunity to test innovative prenatal care approaches to reduce
preterm births for women covered by Medicaid and at risk for preterm
birth. Strong Start has the potential to make a huge difference in
reducing the rate of pre-term birth. We urge the subcommittee to
continue investing in programs like Strong Start.
Again, we would like to thank the subcommittee for its
consideration of funding for programs to improve women's health, and we
urge you to consider our MOMS Initiative in fiscal year 2013.
______

Prepared Statement of the American College of Physicians
The American College of Physicians (ACP) is pleased to submit the
following statement for the record on its priorities, as funded under
the U.S. Department of Health and Human Services, for fiscal year 2013.
ACP is the largest medical specialty organization and the second-
largest physician group in the United States. ACP members include
132,000 internal medicine specialists (internists), related
subspecialists, and medical students.
As the Subcommittee begins deliberations on appropriations for
fiscal year 2013, ACP is urging funding for the following proven
programs to receive appropriations from the Subcommittee:
--Title VII, Section 747, Primary Care Training and Enhancement, at
no less than $71 million;
--National Health Service Corps, $535,087,442 in discretionary
funding, in addition to the $300 million in enhanced funding
through the Community Health Centers Fund;
--National Health Care Workforce Commission, $3 million;
--Agency for Healthcare Research and Quality, $400 million in base
discretionary funding; and
--Centers for Medicare and Medicaid Services, Operations and
Management of Exchanges, $574.5 million.
The United States is facing a growing shortage of physicians in key
specialties, most notably in general internal medicine and family
medicine--the specialties that provide primary care to most adult and
adolescent patients. With enactment of the Affordable Care Act (ACA),
we expect the demand for primary care services to increase with the
addition of 32 million Americans receiving access to health insurance,
once the law is fully implemented. A recent study projects that there
will be a shortage of up to 44,000 primary care physicians for adults,
even before the increased demand for healthcare services that will
result from near universal coverage is taken into account (Colwill JM,
Cultice JM, Kruse RL. Will generalist physician supply meet demands of
an increasing and aging population? Health Aff (Millwood). 2008 May-
June; 27(3):w232-41. Epub 2008 April 29. Accessed at http://
content.healthaffairs.org/content/27/3/w232.full on January 14, 2011.).
Without critical funding for vital workforce programs, this physician
shortage will only grow worse. A strong primary care infrastructure is
an essential part of any high-functioning healthcare system, with over
100 studies showing primary care is associated with better outcomes and
lower costs of care (http://www.acponline.org/advocacy/where_we_stand/
policy/primary_shortage.pdf).
The health professions education programs, authorized under Title
VII of the Public Health Service Act and administered through the
Health Resources and Services Administration (HRSA), support the
training and education of healthcare providers to enhance the supply,
diversity, and distribution of the healthcare workforce, filling the
gaps in the supply of health professionals not met by traditional
market forces, and are critical to help institutions and programs
respond to the current and emerging challenges of ensuring all
Americans have access to appropriate and timely health services. Within
the Title VII program, while we applaud the President's request for $51
million for the Section 747, Primary Care Training and Enhancement, we
urge the Subcommittee to fund the program at $71 million, in order to
maintain and expand the pipeline of primary care production and
training. The Section 747 program is the only source of Federal
training dollars available for general internal medicine, general
pediatrics, and family medicine. For example, general internists, who
have long been at the frontline of patient care, have benefitted from
Title VII training models that promoted interdisciplinary training that
helped prepare them to work with other health professionals, such as
physician assistants, patient educators and psychologists. Without a
substantial increase of funding, HRSA will not be able to carry out a
competitive grant cycle for the second year in a row for physician
training; the Nation needs new initiatives relating to increased
training in inter-professional care, the patient-centered medical home,
and other new competencies required in our developing health system.
The College urges $535,087,442 in appropriations for the National
Health Service Corps (NHSC), the amount authorized for fiscal year 2013
under the ACA; this is in addition to the $300 million in enhanced
funding the Health and Human Services Secretary has been given the
authority to provide to the NHSC through the Community Health Care
Fund. Since enactment of the ACA, the NHSC has awarded nearly $900
million in scholarships and loan repayment to healthcare professionals
to help expand the country's primary care workforce and meet the
healthcare needs of communities across the country and there are nearly
three times the number of NHSC clinicians working in communities across
America than there were 3 years ago, increasing Americans' access to
healthcare. With field strength of more than 10,000 clinicians, NHSC
provides healthcare services to about 10.5 million patients across the
country; the increase in funds must be sustained to help address the
health professionals' workforce shortage and growing maldistribution.
The programs under NHSC have proven to make an impact in meeting the
healthcare needs of the underserved, and with more appropriations, they
can do more.
We urge the Subcommittee to fully fund the National Health Care
Workforce Commission, as authorized by the ACA, at $3 million. The
Commission is authorized to review current and projected healthcare
workforce supply and demand and make recommendations to Congress and
the administration regarding national healthcare workforce priories,
goals, and polices. Members of the Commission have been appointed but
have not been able to do any work, due to a lack of funding. The
College believes the Nation needs sound research methodologies embedded
in its workforce policy to determine the Nation's current and future
needs for the appropriate number of physicians by specialty and
geographic areas; the work of the Commission is imperative to ensure
Congress is creating the best policies for our Nation's needs.
The Agency for Healthcare Research and Quality (AHRQ) is the
leading public health service agency focused on healthcare quality.
AHRQ's research provides the evidence-based information needed by
consumers, providers, health plans, purchasers, and policymakers to
make informed healthcare decisions. The College is dedicated to
ensuring AHRQ's vital role in improving the quality of our Nation's
health and recommends a base discretionary budget of $400 million. This
amount will allow AHRQ to continue its critical healthcare safety,
quality, and efficiency initiatives; strengthen the infrastructure of
the research field; reignite innovation and discovery; develop the next
generation of scientific pioneers; and ultimately, help transform
health and healthcare.
Finally, ACP is supportive of the Centers for Medicare and Medicaid
Services, Operations and Management of Exchanges request for $574.5
million. Such funding will allow the Federal Government to administer
an insurance exchange, as authorized by the ACA, if a State declines to
establish one by early 2013 that meets Federal requirements. If the
Subcommittees decides to deny the requested funds, it may make it much
more difficult for the Federal Government to organize a federally
facilitated exchange in those States, raising questions about where and
how their residents would get coverage. It is ACP's belief that all
legal Americans--regardless of income level, health status, or
geographic location--must have access to affordable health insurance.
In conclusion, the College is keenly aware of the fiscal pressures
facing the Subcommittee today, but strongly believes the United States
must invest in these programs in order to achieve a high performance
healthcare system and build capacity in our primary care workforce and
public health system. The College greatly appreciates the support of
the Subcommittee on these issues and looks forward to working with
Congress as you begin to work on the fiscal year 2013 appropriations
process.
______

Prepared Statement of the Association for Clinical Research Training,
the Association for Patient-Oriented Research, the Clinical Research
Forum, and the Society for Clinical and Translational Science
The Association for Clinical Research Training (ACRT), the
Association for Patient-Oriented Research (APOR), the Clinical Research
Forum (CR Forum), and the Society for Clinical and Translational
Science (SCTS) represent a coalition of professional organizations
dedicated to improving the health of the public through increased
clinical and translational research and clinical research training.
United by the shared priorities of the clinical and translational
research community, ACRT, APOR, CR Forum, and SCTS advocate for
increased clinical and translational research at the National
Institutes of Health (NIH), the Agency for Healthcare Research and
Quality (AHRQ), and other Federal science agencies.
On behalf of ACRT, APOR, CR Forum, and SCTS, I would like to thank
the Subcommittee for its continued support of clinical and
translational research and clinical research training. The translation
of basic science to clinical treatment is an integral component of
modern research and a necessity to developing the treatments and cures
of tomorrow. We applaud the recent establishment of the National Center
for Advancing Translational Sciences (NCATS) and its focus on the
entire spectrum of translational research from the bench to
implementation in the community. Housing translational research
activities with a focus on translational science methods at a single
Center at NIH will allow these programs to achieve new levels of
success.
Today, I would like to address a number of issues that cut to the
heart of the clinical and translational research community's
priorities, including the Clinical and Translational Science Awards
program (CTSA) at NIH, career development for clinical researchers, and
support for comparative effectiveness research at the Federal level.
As our Nation's investment in biomedical research expands to
provide more accurate and efficient treatments for patients, we must
continue to focus on the translation of basic science to clinical
research. The CTSA program at NIH is an invaluable resource in this
area, and full funding is critical if we are truly to take advantage of
the CTSA infrastructure.
Full Funding and Support for the CTSA Program at NIH
With its establishment in 2006, the CTSA program at NIH began to
address the need for increased focus on translational research, or
research that bridges the gap between basic scientific discoveries and
the bedside. In 2011, the CTSA Consortium reached its expected size of
60 medical research institutions located throughout the Nation, linking
them together to energize the discipline of clinical and translational
science. The CTSAs have an explicit goal of improving healthcare in the
United States by transforming the biomedical research enterprise to
become more effectively translational. Specifically, the stated
strategic goals of the CTSA program are to: (1) build national clinical
and translational research capability, (2) provide training and career
development of clinical and translational scientists, (3) enhance
consortium-wide collaborations, (4) improve the health of our
communities and the Nation through community engagement and comparative
effectiveness research, and (5) advance T1 (bench-to-bedside)
translational research, which transfers knowledge from basic research
to clinical research.
Although the promise of the CTSA program is recognized both
nationally and internationally, it has suffered from a lack of proper
funding along with NIH and, in the past, the National Center for
Research Resources (NCRR). In 2006, 16 initial CTSAs were funded,
followed by an additional 12 in 2007, 14 in 2008, 4 in 2009, 9 in 2010,
and 5 in 2011. Level-funding at NIH curtailed the growth of the CTSAs,
preventing recipient institutions from fully implementing their
programs and causing them to drastically alter their budgets after
research had already begun. Without enough funding, the CTSAs risk
jeopardizing not only new research but also the research begun by
first, second, and third generation CTSAs. Professional judgments have
determined full funding to be at a level of $700 million.
We appreciate the difficult economic situation our country is
currently experiencing, and greatly appreciate the commitment to
healthcare Congress has demonstrated in recent years. The CTSAs are
currently funding 60 academic research institutions nationwide at a
level of $488 million. The translation of laboratory research to
clinical treatment directly benefits patients suffering from complex
diseases across all fields of medicine, and impacts all of NIH's
Institutes and Centers (ICs). The CTSA program has created improved
translational research capacity and processes from which all NIH's ICs
stand to benefit.
In order to fully realize the promise of the CTSAs in transforming
biomedical research to improve its impact on health, it is imperative
that the CTSA program receive funding at the level of $700 million in
fiscal year 2013. Without full funding, CTSAs will be expected to
operate with fewer resources, curtailing their transformative promise.
It is also critical that the emphasis on the full spectrum of
translational research be maintained during the program's transition to
NCATS.
It is our recommendation that the Subcommittee support full funding
of the CTSA program by providing $700 million in fiscal year 2013, and
that support for the full spectrum of translational research be
protected during the transition of the CTSA program to NCATS.
Support for Research Training and Career Development Programs through
the K Awards
The future of our Nation's biomedical research enterprise relies
heavily on the maintenance and continued recruitment of promising young
investigators. Clinical investigators have long been referred to as an
``endangered species,'' as financial barriers push medical students
away from research. This trend must be reversed if we are to continue
our pursuits of better treatments and cures for patients.
The T and K series Awards at NIH and AHRQ provide much-needed
support for the career development of young investigators. As clinical
and translational medicine takes on increasing importance, there is a
great need to grow these programs, not to reduce them. Career
development grants are crucial to the recruitment of promising young
investigators, as well as to the continuing education of established
investigators. Reduced commitment to the K-12, K-23, K-24, and K-30
awards would have a devastating impact on our pool of highly trained
clinical researchers. Even with the full implementation of the CTSA
program, it is critical for institutions without CTSAs to retain their
K-30 Clinical Research Curriculum Awards, as the K-30s remain a highly
cost-effective method of ensuring quality clinical research training.
ACRT, APOR, CRF, and SCTS strongly support the ongoing commitment to
clinical research training through K Awards at NIH and AHRQ.
We urge the Subcommittee to continue its support for clinical
research training and career development through the K Awards at NIH
and AHRQ, in order to promote and encourage investigators working to
transform biomedical science.
Continuing Support for CER
Comparative effectiveness research (CER) is the evaluation of the
impact of different options that are available for treating a given
medical condition for a particular set of patients. This broad
definition can include medications, behavioral therapies, and medical
devices, among other interventions, and is an important facet of
evidence-based medicine. Both AHRQ and NIH have long histories of
supporting CER, and the standards for research instituted by these
agencies serve as models for best practices worldwide. Not only are
these agencies experienced in CER, they are universally recognized as
impartial and honest brokers of information. Moreover, their approach
is supplemental to, not duplicative of, that of the new Patient-
Centered Outcomes Research Institute, and its continued support is
critical.
We are pleased that Congress recognizes the importance of these
activities and believe that the peer review processes and
infrastructure in place at NIH and AHRQ ensure the highest quality CER.
We believe that collaboration between the Patient-Centered Outcomes
Research Institute, NIH, and AHRQ will drive all Federal CER efforts.
In addition to support for the CTSA program at NIH, we encourage the
Subcommittee to provide continued support for Patient-Centered Health
Research at AHRQ.
Thank you for the opportunity to present the views and
recommendations of the clinical research training community.
______

Prepared Statement of the American Diabetes Association
Thank you for the opportunity to submit testimony on behalf of the
American Diabetes Association (Association). As the Chair of the Board
of the Association, I am proud to be a representative of the nearly 105
million American adults and children living with diabetes or
prediabetes, including my 17-year-old daughter, Leah. My daughter was
diagnosed with type 1 diabetes on March 16, 2001, at the age of 6, and
is living a very full life today due in part to the Federal investment
in diabetes research programs.
My family and many others have been affected by diabetes. Nearly 26
million Americans have diabetes, and 79 million have prediabetes, a
condition that puts them at high risk for developing diabetes. Every 17
seconds, someone in this country is diagnosed with diabetes. Every day,
230 people with diabetes undergo an amputation, 120 people enter end-
stage kidney disease programs and 55 people go blind from diabetes. If
we do not take action, 1 of every 3 children today faces a life with
diabetes. The diabetes epidemic should not be ignored by anyone,
including Congress and the administration.
As the Nation's leading nonprofit health organization providing
diabetes research, information and advocacy, the Association knows how
critical it is for our country to increase Federal funding for diabetes
research and prevention. The Association acknowledges the challenging
fiscal climate and supports fiscal responsibility, but our country
cannot afford the consequences of failing to adequately fund diabetes
research and prevention programs, a cost paid in painful and expensive
complications. We cannot afford to turn our backs on the promising
research that provides tools to prevent diabetes, better manage the
disease, prevent complications, and bring us closer to a cure.
The rising epidemic of diabetes in America is daunting, but not
insurmountable. The Association is pressing forward by supporting
research and expanding education and awareness efforts. But we cannot
do it alone. The millions of people living with, or at risk for,
diabetes are looking to Congress now more than ever to step up its
response to the diabetes epidemic.
Accordingly, the Association urges the Subcommittee on Labor,
Health and Human Services, Education and Related Agencies to invest in
research and prevention efforts reflective of the magnitude of the
burden diabetes has on our country to change the future of diabetes in
America. The Association respectfully requests programs at the National
Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) at the
National Institutes of Health (NIH) and the Division of Diabetes
Translation (DDT) at the Centers for Disease Control and Prevention
(CDC) be top priorities in fiscal year 2013.
background
The CDC has warned diabetes is a disabling, deadly, and growing
epidemic. Last year, the CDC identified the diabetes belt, which
stretches across 644 counties in 15 States, including my State of South
Carolina. According to the CDC, 1 in 3 adults in our country will have
diabetes in 2050 if present trends continue. Among minority
populations, this ratio will be nearly 1 in 2.
Diabetes is a chronic disease that impairs the body's ability to
use food for energy. The hormone insulin, which is made in the
pancreas, is needed for the body to change food into energy. In people
with diabetes, either the pancreas does not create insulin, which is
type 1 diabetes, or the body does not create enough insulin and/or
cells are resistant to insulin, which is type 2 diabetes. If left
untreated, diabetes results in too much glucose in the blood stream.
Blood glucose levels that are too high or too low (as a result of
medication to treat diabetes) can be life threatening in the short
term. In the long term, diabetes is the leading cause of kidney
failure, new cases of adult-onset blindness and non-traumatic lower
limb amputations as well as a leading cause of heart disease and
stroke. Additionally, an estimated 18 percent of pregnancies are
affected by gestational diabetes, a form of glucose intolerance
diagnosed during pregnancy that places both mother and baby at risk. In
those with prediabetes, blood glucose levels are higher than normal and
taking action to reduce their risk of developing diabetes is essential.
In addition to the physical toll, diabetes also tugs at our purse
strings. A study by the Lewin Group found when factoring in the costs
of undiagnosed diabetes, prediabetes, and gestational diabetes, the
total cost of diabetes and related conditions in the United States in
2007 was $218 billion. That same year, medical expenditures due to
diabetes totaled $116 billion, including $27 billion for diabetes care,
$58 billion for chronic diabetes-related complications, and $31 billion
for excess general medical costs. Indirect costs resulting from
increased absenteeism, reduced productivity, disease-related
unemployment disability and loss of productive capacity due to early
mortality totaled $58 billion. Approximately $1 out of every $5 for
healthcare is spent caring for someone with diagnosed diabetes, while
$1 in $10 for healthcare is directly attributed to diabetes. Further,
one-third of Medicare expenses are associated with treating diabetes
and its complications.
A greater Federal investment in diabetes research at the NIDDK at
the NIH, and prevention, surveillance, control, and research work
currently being done by the DDT at the CDC is crucial for finding a
cure and improving the lives of those living with, or at risk for,
diabetes. Additionally, the National Diabetes Prevention Program is
working to dramatically decrease the number of new diabetes cases in
high-risk individuals.
Accordingly, for fiscal year 2013, the Association requests funding
for the following programs:
--$2.216 billion for the NIDDK. This level of funding will act to
offset years of decreased or flat funding combined with bio-
medical inflation that has lead to cutbacks in promising
research. It will also demonstrate Congress' commitment to
science and research in the face of this deadly epidemic.
--$86.3 million for the DDT's critical prevention, surveillance and
control programs. Even as proposals to consolidate the CDC's
chronic disease programs, including the DDT circulate, expanded
investment in the DDT will produce much larger savings in
reduced acute, chronic, and emergency care spending.
--$80 million for the implementation of the National Diabetes
Prevention Program.
the national institute of diabetes and digestive and kidney diseases
(niddk) at the nih
NIDDK is leading the way in supporting research across the country
that moves us closer to a cure and better treatments for diabetes.
Researchers are working on a variety of projects in each of your States
representing hope for the millions of individuals with diabetes. The
Association is extremely worried that without increased funding, the
NIDDK will slow or halt promising research that would enable
individuals with the disease to live healthier, more productive lives.
It is our understanding the percentage of research grants NIDDK was
able to fund decreased last year and is expected to decrease again this
year without additional funding.
Thanks to research at the NIDDK, people with diabetes now manage
their disease with a variety of insulin formulations and regimens far
superior to those used in decades past. For example, the continuous
glucose monitor and insulin pump my daughter uses allow her to better
manage her blood glucose levels--and better pave the way to a healthier
future.
Examples of NIDDK-funded breakthroughs include: new drug therapies
for type 2 diabetes; the advent of modern treatment regimens that have
reduced the risk of costly complications like heart disease, stroke,
amputation, blindness and kidney disease; ongoing development of the
artificial pancreas, a closed looped system combining continuous
glucose monitoring with insulin delivery; and research showing modest
weight loss through dietary changes and increased physical activity can
reduce the risk of type 2 diabetes by 58 percent, the foundation for
the National Diabetes Prevention Program at the DDT.
Increased fiscal year 2013 funding would allow the NIDDK to support
additional research in order to build upon past successes, improve
prevention and treatment, and close in on a cure. For example,
additional funding will support a new comparative effectiveness
clinical trial testing different medications for type 2 diabetes.
Additionally, increased funding will continue to support researchers
studying how insulin-producing beta cells develop and function, with an
ultimate goal of creating therapies for replacing damaged or destroyed
beta cells in people with diabetes. Funding will also support a
clinical trial testing vitamin D in the prevention of type 2 diabetes,
and support ongoing studies on the environmental triggers of disease,
which could identify an infectious cause of type 1 diabetes and lead to
a vaccine.
the division of diabetes translation (ddt) at the cdc
The President's fiscal year 2013 budget proposal includes a
proposal to consolidate certain programs at CDC, including the DDT.
While we think coordination across chronic disease programs at CDC is
an important endeavor, Congress must ensure the needs of people with,
and at risk for, diabetes are adequately addressed. For such a
coordinated effort to be successful, significant resources must be
provided. In addition, there must be a clear design focusing precisely
on chronic diseases with similar risk factors and populations, allowing
for the delivery of primary, secondary and tertiary prevention, and
ensuring performance measures result in improved prevention of chronic
disease and complications.
Given that the DDT's funding has not kept pace with the magnitude
of the growing diabetes epidemic, the Federal investment in DDT
programs should be substantially increased to a minimum of $86.3
million in fiscal year 2013 regardless of the organization of chronic
disease programs at CDC and even as the evaluation of the
administration's proposal continues. As the dialogue moves forward
about how best to address chronic disease prevention, the DDT should be
the centerpiece in the Federal Government's efforts in this regard and
its State and national expertise should be maintained.
Preserving the DDT's expertise is vital. The DDT works to eliminate
the preventable burden of diabetes through proven educational programs,
best practice guidelines, and applied research. It performs vital work
in both primary prevention of diabetes and in preventing its
complications. Funding for the DDT must focus on maintaining State-
based Diabetes Prevention and Control Programs, supporting the National
Diabetes Education Program, defining the diabetes burden through the
use of public health surveillance, and translating research findings
into clinical and public health practice.
The DDT's work in this regard is organized into several key
components, which are also part of the part of the President's fiscal
year 2013 budget proposal. As outlined in the Obama administration's
budget these include: (1) the implementation of strategies that support
and reinforce healthful behaviors and expand access to healthy choices;
(2) health systems interventions to improve the delivery and use of
clinical and other preventive services; and (3) community-clinical
linkage enhancement to better support chronic disease self-management.
For example, the DDT's Diabetes Prevention and Control Programs
(DPCPs), located in all 50 States, the District of Columbia, and all
U.S. territories work to prevent diabetes, lower blood glucose and
cholesterol levels, and reduce diabetes-related emergency room visits
and hospitalizations. These activities are designed to improve
education and awareness of diabetes by engaging health providers,
health systems and community-based organizations to ensure that these
outcomes are achieved. Additionally, DDT funding also supports vital
and groundbreaking translational research like the Search for Diabetes
in Youth study, a collaboration between the DDT and the NIDDK designed
to determine the impact of type 2 diabetes in youth in order to improve
prevention efforts aimed at young people. This work is illustrative of
efforts at DDT to transform clinical research into cutting-edge tools
to track the diabetes epidemic and prevent new cases and help
individuals with diabetes to avoid complications.
With additional funding, the DDT will be able to expand the efforts
of DPCPs to improve primary, secondary and tertiary prevention efforts
at the State and local levels. Given the dramatic decreases in funding
for State and local health departments, supporting the work of the
DPCPs is more critical than ever to ensure access to diabetes care and
services. Additionally, increased funding for the DDT is needed to
allow it to build upon its work in reducing health disparities through
vital programs such as the Native Diabetes Wellness Program, which
furthers the development of effective health promotion activities and
messages tailored to American Indian/Native Alaskan communities. These
resources will also enable the DDT to expand its translational research
studies, leading to improved public health interventions.
the national diabetes prevention program
The CDC's National Diabetes Prevention Program (NDPP) supports the
national network of community-based sites where trained staff will
provide those at high risk for diabetes with cost-effective, group-
based lifestyle intervention programs.
The NDPP is a proven and inexpensive means of combating a growing
epidemic. Research has shown the NDPP can reduce the risk of type 2
diabetes by 58 percent for individuals with prediabetes. Furthermore,
the NDPP costs approximately $300 per participant, as compared to an
average of $6,649 in annual healthcare costs for the treatment of a
person with diabetes. The Urban Institute has estimated a nationwide
expansion of this type of diabetes prevention program will save a total
of $190 billion over 10 years. The Association urges Congress to
provide $80 million for the NDPP in fiscal year 2013, funding needed to
bring this program to scale nationwide using rigorous standards
established by DDT.
conclusion
Not a day passes that I don't imagine a world free of diabetes and
all its burdens on my daughter. This future is possible and the
Association is counting on Congress to significantly expand its
investment of programs to prevent, treat, and cure diabetes. As you
consider the fiscal year 2013 funding levels for the NIDDK, the DDT,
and the NDPP, we urge you to remember diabetes is an epidemic growing
at an astonishing rate and will overwhelm the healthcare system with
tragic consequences unless our elected officials take action. Thank you
for the opportunity to submit this testimony. The Association looks
forward to working with you to stop diabetes.
______

Prepared Statement of the American Dental Education Association
The American Dental Education Association (ADEA), on behalf of all
61 dental schools in the United States, 700 dental residency training
programs, nearly 600 allied dental programs, as well as more than
12,000 faculty who educate and train the nearly 50,000 students and
residents attending these institutions, submits this statement for the
record and for your consideration as you begin to prioritize fiscal
year 2013 appropriation requests.
ADEA urges you to preserve the funding and fundamental structure of
Federal programs that provide access to oral healthcare for underserved
populations, funding for cutting-edge oral research, access to careers
in dentistry and oral health services and funding for programs that
help promote diversity in the healthcare professions. Oral health
services are provided through our campuses and offsite dental clinics
where students and faculty provide patient care as dental homes to the
uninsured and underserved populations. However, in order to continue to
provide these services, there must be adequate funding.
We are asking the committee to protect and maintain adequate
funding for the dental programs in Title VII of the Public Health
Service Act; the National Institutes of Health (NIH) and the National
Institute of Dental and Craniofacial Research (NIDCR); the Dental
Health Improvement Act; Part F of the Ryan White HIV/AIDS Treatment and
Modernization Act: the Dental Reimbursement Program and the Community-
Based Dental Partnerships Program; and State-Based Oral Health Programs
at the Centers for Disease Control and Prevention. These programs
enhance and sustain State oral health departments, fund public health
programs proven to prevent oral disease, fund research to eradicate
dental disease, and fund programs to develop an adequate workforce of
dentists with advanced training to serve all segments of the population
including children, the elderly, and those suffering from chronic and
life-threatening diseases. We elaborate below the merits of each
program.
$32 million for Primary Oral Healthcare Workforce Improvements (HHS)
ADEA, recognizing the constrained fiscal situation the Congress and
the Nation face, does not request an increase in the President's
request in these funds, but rather respectfully suggests a reallocation
of the funds requested. Specifically, we ask for $8 million for General
Dental Residencies; $8 million for Pediatric Dental Residencies; $5.7
million for dental accounts under Title VII; and, $10.7 million for
DHIA.
The dental programs in Title VII, Section 748 of the Public Health
Service Act that provide training in general, pediatric, and public
health dentistry and dental hygiene are critical. Support for these
programs will help to ensure there will be an adequate oral healthcare
workforce to care for the American public. The funding supports pre-
doctoral oral health education and postdoctoral pediatric, general, and
public health dentistry training. The investment that Title VII makes
not only helps to educate dentists and dental hygienists, but also
expands access to care for underserved populations.
Additionally, Section 748 addresses the shortage of professors in
dental schools with the dental faculty loan repayment program and
faculty development courses for those who teach pediatric, general, or
public health dentistry or dental hygiene. There are currently over 300
open faculty positions in dental schools. These two programs provide
schools with assistance in recruiting and retaining faculty. ADEA is
increasingly concerned that the oral health research community is not
growing and that the pipeline of new researchers is inadequate to
address future needs.
The President's fiscal year 2013 request proposes $228 million for
Title VII health professions, a $40 million (15 percent) cut below the
current fiscal year. The budget request proposes no new funds for the
Title VII Health Careers Opportunity Program (HCOP) and Area Health
Education Centers (AHEC) program. HCOP helps schools provide
opportunities to students from disadvantaged backgrounds to develop the
skills needed to enter the health professions. While the AHEC program
is focused on exposing medical students and health professions students
to primary care and practice in rural and underserved communities. It
is anticipated that the AHEC program grantees will continue their
efforts to provide interprofessional/interdisciplinary training to
health professions students with an emphasis on primary care
ADEA is pleased that last year's committee report included language
supporting opportunities for advanced training for dentists and dental
educational institutional faculty loan repayment programs because of
its recognition of the shortage of pediatric and public health
dentists. Those who complete a general dentistry residency are eligible
to receive additional training which allows them to take on complex
cases of patients with autoimmune or systemic diseases. The Committee
expressed its concern, shared by the academic dentistry community,
about the growing aging population and agrees with the Committee's
suggestion that HRSA create a grant program to provide access to
unpaid, volunteer dental services for medically necessary but otherwise
uncovered and unaffordable dental treatment that would cover the
salaries and other employment costs of professionals who verify the
medical and financial needs, including the absence of other insurance
coverage, of individual patients potentially eligible for such
services.
During the current fiscal year HRSA anticipates providing nearly
$10.5 million in continuation funding for advanced training of dentists
through the Postdoctoral and Dental Faculty Loan Repayment Programs. It
will also provide $10 million in new grants under the Dental Health
Improvement Act, State Oral Health Workforce grant program, and the
Faculty Development in General, Pediatric and Public Health Dentistry
and Dental Hygiene Program.
These are important achievements. But momentum and focus cannot be
lost by not funding, in fiscal year 2013, programs that assist in
identifying and encouraging the future generations of dental
professionals who will serve the most in need of access to adequate
dental care. There is no higher priority in the allocation of Federal
resources to training programs than to directly increase the number of
primary care dental providers for these patients.
$32 billion for the National Institutes of Health, including $450
million for the National Institute of Dental and Craniofacial
Research (NIDCR)
Discoveries stemming from dental research have reduced the burden
of oral diseases, led to better oral health for millions of Americans,
and uncovered important associations between oral and systemic health.
Dental researchers are poised to make breakthroughs that can result in
dramatic progress in medicine and health, such as repairing natural
form and function to faces destroyed by disease, accident, or war
injuries; diagnosing systemic disease from saliva instead of blood
samples; and deciphering the complex interactions and causes of oral
health disparities involving social, economic, cultural, environmental,
racial, ethnic, and biological factors. Dental research is the
underpinning of the profession of dentistry. With grants from NIDCR,
dental researchers in academic dental institutions have built a base of
scientific and clinical knowledge that has been used to enhance the
quality of the Nation's oral health and overall health.
Also, dental scientists are putting science to work for the benefit
of the healthcare system through translational research, comparative
effectiveness research, health information technology, health research
economics, and further research on health disparities. NIDCR continues
to make disparities a priority with continued funding for the Centers
for Research to Reduce Disparities in Oral Health at Boston University;
the University of California at San Francisco; the University of
Colorado at Denver; the University of Florida; and the University of
Washington.
$19 million for Part F of the Ryan White HIV/AIDS Treatment and
Modernization Act: Dental Reimbursement Program (DRP) and the
Community-Based Dental Partnerships Program
Patients with compromised immune systems are more prone to oral
infections like periodontal disease and tooth decay. By providing
reimbursement to dental schools and schools of dental hygiene, the
Dental Reimbursement Program (DRP) provides access to quality dental
care for people living with HIV/AIDS while simultaneously providing
educational and training opportunities to dental residents, dental
students, and dental hygiene students who deliver the care. DRP is a
cost-effective Federal/institutional partnership that provides partial
reimbursement to academic dental institutions for costs incurred in
providing dental care to people living with HIV/AIDS.
$107 million for Title VII Diversity and Student Aid Programs
$24 million for Centers of Excellence (COE).
$60 million for Scholarships for Disadvantaged Students (SDS).
$22 million for Health Careers Opportunity Program (HCOP).
$1.2 million for Faculty Loan Repayment Program (FLRP).
Title VII Diversity and Student Aid programs play a critical role
in helping to diversify the health profession's student body and
thereby the healthcare workforce. For the last several years, these
programs have not enjoyed adequate funding to sustain the progress that
is necessary to meet the challenges of an increasingly diverse U.S.
population. ADEA is most concerned that the administration did not
request any funds for HCOP. HCOP helps schools provide opportunities to
students from disadvantaged backgrounds to develop the skills needed to
enter the health professions. These programs are significant because
students from disadvantaged backgrounds are more likely to return to
those areas to serve the communities.
$25 million for the Division of Oral Health at the Centers for Disease
Control and Prevention (CDC)
The CDC Division of Oral Health expands the coverage of effective
prevention programs. The program increases the basic capacity of State
oral health programs to accurately assess the needs of the State,
organize and evaluate prevention programs, develop coalitions, address
oral health in State health plans, and effectively allocate resources
to the programs. This strong public health response is needed to meet
the challenges of oral disease affecting children, and vulnerable
populations.
We are disappointed that the President's request represents only a
marginal increase over fiscal year 2012 appropriated levels, well below
an amount needed to keep up with inflation. The appropriated level for
fiscal year 2012 and the request for fiscal year 2013 are below the
inadequate level of fiscal year 2011 appropriations. We look forward to
sharing information with the committee in the coming weeks about the
impact that the current path of funding will have on the overall health
and preparedness of the Nation's States and communities.
Thank you for your consideration of this request. ADEA looks
forward to working with you to ensure the continuation of congressional
support for these critical programs. Please feel free to use us as a
resource. We can be reached by contacting Yvonne Knight, J.D., Senior
Vice President for Advocacy and Governmental Relations, ADEA Policy
Center, at [email protected].
______

Prepared Statement of the American Dental Hygienists' Association
On behalf of the American Dental Hygienists' Association (ADHA),
thank you for the opportunity to submit testimony regarding
appropriations for fiscal year 2013. ADHA appreciates the
subcommittee's past support of programs that seek to improve the oral
health of Americans and to bolster the oral health workforce. Oral
health is a part of total health and authorized oral healthcare
programs require appropriations support in order to increase the
accessibility of oral health services, particularly for the
underserved.
ADHA is the largest national organization representing the
professional interests of more than 150,000 licensed dental hygienists
across the country. In order to become licensed as a dental hygienist,
an individual must graduate from an accredited dental hygiene education
program and successfully complete a national written and a State or
regional clinical examination. Dental hygienists are primary care
providers of oral health services and are licensed in each of the 50
States. Hygienists are committed to improving the Nation's oral health,
a fundamental part of overall health and general well-being.
In the past decade, the link between oral health and total health
has become more apparent and the significant disparities in access to
oral healthcare services have been well documented. At the State and
local level, policymakers and consumer advocates have been pioneering
innovations to extend the reach of the oral healthcare delivery system
and improve oral health infrastructure. At this time, when 130,000
million Americans struggle to obtain the oral healthcare required to
remain healthy, Congress has a great opportunity to support oral health
prevention, infrastructure and workforce efforts that will make care
more accessible and cost-effective.
ADHA urges full funding of all authorized oral health programs and
describes some of the key oral health programs below:
Title VII Program Grants to Expand and Educate the Dental
Workforce--Fund at a level of $32 million in fiscal year 2013.--A
number of existing grant programs offered under Title VII support
health professions education programs, students, and faculty. ADHA is
pleased dental hygienists are recognized as primary care providers of
oral health services and are included as eligible to apply for several
grants offered under the ``General, Pediatric, and Public Health
Dentistry'' grants.
With millions more Americans eligible for dental coverage in coming
years, it is critical that the oral health workforce is bolstered.
Dental and dental hygiene education programs currently struggle with
significant shortages in faculty and there is a dearth of providers
pursuing careers in public health dentistry and pediatric dentistry.
Securing appropriations to expand the Title VII grant offerings to
additional dental hygienists and dentists will provide much needed
support to programs, faculty, and students in the future.
ADHA recommends funding at a level of $32 million for fiscal year
2013.
Alternative Dental Health Care Provider Demonstration Project
Grants--Fund at a level of $10 million in fiscal year 2013.--Congress
recognized the need to improve the oral healthcare delivery system when
it authorized the Alternative Dental Health Care Provider Demonstration
Grants, Section 340G-1 of the Public Health Service Act. The
Alternative Dental Health Care Providers Demonstration Grants program
is a Federal grant program that recognizes the need for innovations to
be made in oral healthcare delivery to bring quality care to the
underserved by pilot testing new models. This is an opportunity for
dental education programs, health centers, public-private partnerships
and other eligible entities to apply for funding that will allow for
innovation, within the confines of State laws, to further develop the
dental workforce and extend the reach of the oral healthcare system.
This grant program, administered by the Health Resources and Services
Administration (HRSA), would fund workforce innovations, including
building on the existing dental hygiene workforce, utilizing medical
providers, and pilot testing new providers, like dental therapists and
advanced practice dental hygienists, who practice in accordance with
State practice acts.
A number of dental hygiene-based models are listed as eligible for
the grants, including advanced practice dental hygienists, public
health hygienists and independent practice dental hygienists.
Currently, 35 States have policies that allow dental hygienists to work
in community-based settings (like public health clinics, schools, and
nursing homes) to provide preventive oral health services without the
presence or direct supervision of a dentist. Among the 35 direct access
States are the Senators' home States of Iowa, Wisconsin, Washington
State, Rhode Island, Arkansas, Ohio, Texas, South Carolina and Kansas.
Direct access to dental hygiene services is especially critical for
vulnerable populations like children, the elderly, and the
geographically isolated who often struggle to overcome transportation,
lack of insurance coverage, and other barriers to oral healthcare.
Dental workforce expansion is one of many areas that need to be
addressed as we move forward with efforts to increase access to oral
healthcare services to those who are currently not able to obtain the
care needed to maintain a healthy mouth and body. The authorizing
statute makes clear that pilots must ``increase access to dental care
services in rural and underserved communities'' and comply with State
licensing requirements. Such new providers are already authorized in
Minnesota and are under consideration in Connecticut, Vermont, Kansas,
Maine, New Hampshire, Washington State and several other States.
The fiscal year 2012 Labor, Health and Human Services funding bill
included language designed to block funding for this important
demonstration program. We seek your leadership in removing this
unjustified prohibition on funding for the Alternative Dental Health
Care Providers Demonstration Grants. This is a grant program to explore
new ways of delivering oral healthcare in rural and underserved areas
in compliance with State law. There is unanimity in the call for new
types of dental providers and there simply is no health policy
justification for the prohibition.
Please keep the following points in mind as you consider funding
this dental workforce grant program for the underserved:
--The existing dental delivery model has increased in efficiency and
is highly effective for those who have access to a dental
office and are covered through insurance. However, the system
fails the more than 80 million Americans who lack dental
insurance, those who are geographically isolated, and those who
are unable to travel to a private dental office for treatment.
--Reports that these workforce pilots will allow non-dentists to do
dental surgery/irreversible procedures are unfounded. All
grants must, by statute, be conducted in accordance with State
law. The grant program cannot authorize or allow non-dentists
to perform irreversible/surgical dental procedures unless State
law allows for the provision of such services.
--All pilots must be specifically designed to increase access in
rural and other underserved areas. This is a dental workforce
grant program for the underserved.
--Nearly 48 million Americans live in dental health professional
shortage areas according to the Health Resources and Services
Administration (HRSA), and HRSA included funding for this
program in its fiscal year 2012 and fiscal year 2013 budget
justifications.
--An estimated 9,500 new dental practitioners are needed to end the
Nation's dental care shortages. New types of models must be
explored and, by statute, HRSA must contract with IOM to
evaluate the demonstrations, which will yield valuable
information to inform decisions about the dental workforce of
the future.
--All evidence available demonstrates the safety and quality of care
delivered by non-dentist providers, including for Dental Health
Aide Therapists in Alaska. Dental therapists have successfully
been in practice overseas for nearly a century. Funding to
support pilot testing of new dental workforce models will yield
additional data on the economic viability of new oral health
providers.
--The Alternative Dental Health Care Providers Demonstration Program
is a grant program to pilot dental workforce innovations that,
by statute, must ``increase access to dental healthcare
services in rural and other underserved communities'' and must
be compliant with ``all applicable State licensing
requirements.'' New types of dental providers are essential to
solving the Nation's oral health access crisis and this grant
program will help determine what types of providers are viable.
ADHA, along with more than 60 other oral healthcare organizations,
advocated for funding of this important program. Without the
appropriate supply, diversity and distribution of the oral health
workforce, the current oral health access crisis will only be
exacerbated.
ADHA recommends funding at a level of $10 million for fiscal year
2013 to support these vital demonstration projects.
Oral Health Prevention and Education Campaign--Fund at a level of
$5 million in fiscal year 2013.--A targeted national campaign led by
the Centers for Disease Control to educate the public, particularly
those who are underserved, about the benefits of oral health prevention
could vastly improve oral health literacy in the country. While
significant data has emerged over the past decade drawing the link
between oral health and systemic diseases like diabetes, heart disease,
and stroke, many remain unaware that neglected oral health can have
serious ramifications to their overall health. Data is also emerging to
highlight the role that poor oral health in pregnant women has on their
children, including a link between periodontal disease and low-birth
weight babies.
ADHA advocates an allocation of $5 million in fiscal year 2013 for
a national oral health prevention and education campaign.
School-Based Sealant Programs--Fund at a level sufficient to ensure
school-based sealant programs in all 50 States.--Sealants have long-
proven to be low-cost and effective in preventing dental caries
(cavities), particularly in children. While most dental disease is
fully preventable, dental caries remains the most common childhood
disease, five times more common than asthma, and more than half of all
children age 5-9 have a cavity or filling.
The CDC noted that data collected in evaluations of school-based
sealant programs indicates the programs are effective in stopping and
preventing dental decay. Significant progress has been made in
developing best practices for school-based sealant programs, yet most
States lack well developed programs as a result of funding shortfalls.
ADHA encourages the transfer of funding from the Public Health and
Prevention Fund sufficient to allow CDC to meaningfully fund school-
based sealant programs in all 50 States in fiscal year 2013.
Oral Health Programming within the Centers for Disease Control--
Fund at a level of $25 million in fiscal year 2013.--ADHA joins with
others in the dental community in urging $25 million for oral health
programming within the Centers for Disease Control. This funding level
will enable CDC to continue its vital work to control and prevent oral
disease, including vital work in community water fluoridation. Federal
grants to facilitate improved oral health leadership at the State
level, support the collection and synthesis of data regarding oral
health coverage and access, promote the integrated delivery of oral
health and other medical services, enable States to innovate new types
of oral health programs and promote a data-driven approach to oral
health programming.
ADHA advocates for $25 million in funding for grants to improve and
support oral health infrastructure and surveillance.
Dental Health Improvement Grants--Fund at a level of $20 million in
fiscal year 2013.--HRSA administered dental health improvement grants
are an important resource for States to have available to develop and
carry out State oral health plans and related programs. Past grantees
have used funds to better utilize the existing oral health workforce to
achieve greater access to care. Previously awarded grants have funded
efforts to increase diversity among oral health providers in Wisconsin,
promote better utilization of the existing workforce including the
extended care permit (ECP) dental hygienist in Kansas, and in Virginia
implement a legislatively directed pilot program to allow patients to
directly access dental hygiene services.
ADHA supports funding of HRSA dental health improvement grants at a
level of $20 million for fiscal year 2013.
National Institute of Dental and Craniofacial Research--Fund at a
level of $450 million in fiscal year 2013.--The National Institute of
Dental and Craniofacial Research (NIDCR) cultivates oral health
research that has led to a greater understanding of oral diseases and
their treatments and the link between oral health and overall health.
Research breeds innovation and efficiency, both of which are vital to
improving access to oral healthcare services and improved oral status
of Americans in the future.
ADHA joins with others in the oral health community to support
NIDCR funding at a level of $450 million in fiscal year 2013.
conclusion
ADHA appreciates the difficult task appropriators face in
prioritizing and funding the many meritorious programs and grants
offered by the Federal Government. In addition to the items listed,
ADHA joins other oral health organizations in support for continued
funding of the Dental Reimbursement Program (DRP) and the Community-
Based Dental Partnerships Program established under the Ryan White HIV/
AIDS Treatment and Modernization Act ($14 million for fiscal year 2013)
as well as block grants offered by HRSA's Maternal Child Health Bureau
($8 million for fiscal year 2013). ADHA also supports full funding for
community health centers, and urges HRSA be directed to further bolster
the delivery of oral health services at community health centers,
including through the use of new types of dental providers.
ADHA remains a committed partner in advocating for meaningful oral
health programming that makes efficient use of the existing oral health
workforce and delivers high quality, cost-effective care.
______

Prepared Statement of the Arthritis Foundation
On behalf of the over 50 million Americans--or one and five adults
who live with the heavy burden of arthritis--the pain, disability, cost
and more; The Arthritis Foundation would like to provide
recommendations for the Labor Health and Human Services (Labor HHS)
budget for fiscal year 2013.
The Arthritis Foundation is committed to raising awareness and
reducing the unacceptable impact of arthritis, which strikes one in
every five adults and 300,000 children, and is the Nation's leading
cause of disability. To conquer this painful, debilitating disease, we
support education, research, advocacy and other vital programs and
services.
The Arthritis Foundation would like to comment on three specific
agencies of jurisdiction of the Labor-HHS Appropriations Subcommittee,
the National Institutes of Health (NIH) and in particular the National
Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS),
the Health Services Resources Administration (HRSA) and the Centers for
Disease Control (CDC).
summary request--arthritis related funding
The Arthritis Foundation strongly recommends that funding research
funding at the National Institutes of Health and specifically at the
National Institute of Arthritis and Musculoskeletal and Skin Diseases
(NIAMS) should both be increased at least 4.5 percent which would be
the minimum level to maintain current research and account for
inflation. NIH funding should be allocated $32 billion for fiscal year
2013 and NIAMS should be funded at $559 million to fund critical
research on arthritis and other related diseases at the Institute. For
the over 300,000 children with Juvenile Arthritis (JA), access to a
pediatric rheumatologist in most States is a challenge. A HRSA report
to Congress in 2007 highlighted the lack of a pediatric rheumatologist
for most children with juvenile arthritis; in fact, many States have
less than two pediatric rheumatologists who treat these patients. The
Arthritis Foundation strongly urges Congress to support the President's
budget allocation of $5 million significantly less than the $30 million
authorized to support loan repayment for pediatric specialists.
Finally, the President' once again proposes to consolidate the Center
for Disease Control's (CDC) disease programs including the CDC
Arthritis Program into one chronic disease program. Last year Congress
rejected a similar proposal, and the Arthritis Foundation continues to
have concerns about consolidation. We instead request that Congress
provide an increase ($10 million) to expand the CDC Arthritis Program
to $23 million for fiscal year 2013. These additional funds would allow
the Program to expand to 10 additional States.
arthritis related research investments at the national institutes of
health (nih): fudning for the national insttute of arthritis and
musculoskeletal and skin diseases (niams)
Research holds the key to preventing, controlling, and curing
arthritis, the Nation's leading cause of disability. The prevalence,
impact and disabling pain continues to increase. 50 million Americans--
one in five adults--have arthritis now. Within 20 years, the Centers
for Disease Control and Prevention (CDC) estimate 67 million adults or
25 percent of the population will have arthritis. Arthritis limits the
daily activities of 21 million Americans and accounts for $128 billion
annually in economic costs. The National Institute of Arthritis and
Musculoskeletal and Skin Diseases (NIAMS) supports research into the
causes, treatment, and prevention of arthritis and musculoskeletal and
skin diseases. The critical research done at NIAMS improves the quality
of life for people with arthritis and decreases the overall burden of
the disease. Two examples include:
--Cartilage regeneration studies for patients with osteoarthritis
(OA), which afflicts 27 million Americans. This innovation
could lead to the first disease-reversing drug to be available
for patients with OA.
--A randomized, controlled trial on effectiveness of daily calcium
supplementation for increasing bone mineral density in children
with JA. The trial found that supplementation resulted in a
small, but statically significant, increase in total body
mineral density compared with a placebo in children with JA.
The Arthritis Foundation recommends at least $32 billion for fiscal
year 2013 ($559 million for NIAMS) representing a 4.5 percent increase
in funding, the minimum level to maintain current research and account
for inflation.
hrsa pediatric subspeciality loan repayment program
Juvenile arthritis is one of the most common childhood diseases,
affecting more children than cystic fibrosis and muscular dystrophy.
Currently, there are less than 250 pediatric rheumatologists in the
United States and about 90 percent of those are clustered in and around
large cities. Pediatric rheumatology has one of the smallest numbers of
doctors of any pediatric subspecialty. Of those children with juvenile
arthritis, only one-fourth see a pediatric rheumatologist due to their
scarcity. The other 75 percent of juvenile arthritis patients see
either pediatricians (who tend not to be trained in how to care for
juvenile arthritis) or adult rheumatologists, who aren't trained to
deal with pediatric issues. Issues such as whether it's the stunted
bone growth that can result from arthritis and its treatment, or the
unwillingness of an adolescent to take his medicine. There are
currently six States that do not have a single practicing pediatric
rheumatologist and eight States with only one pediatric rheumatologist.
The pediatric subspecialty loan repayment program was authorized by
Section 5203 of the Affordable Care Act (ACA) in March 2010. The
program would incentivize training and practice in pediatric medical
subspecialties, like pediatric rheumatology, in underserved areas
across the United States. The program would offer up to $35,000 in loan
forgiveness for each year of service for a maximum of 3 years. The
program was authorized for $30 million for fiscal year 2010 through
fiscal year 2014, but has yet to be appropriated any funding. The
Arthritis Foundation supports the President's request of $5 million to
fund the Pediatric Subspecialty Loan Repayment Program.
center for disease control: cdc arthrits program
Arthritis is a complex family of more than 100 different diseases
or conditions that destroys joints, bones, muscles, cartilage and other
connective tissues, hampering or halting physical movement. It is the
most common cause of disability in the United States, striking people
of all ages, races and ethnicities and currently affects 1 in 5
Americans. Its impact on the economy is about $128 billion including
over $81 billion in direct costs for expense like physicians visits and
surgical interventions.
The goal of the CDC Arthritis Program is to improve the quality of
life for people affected by arthritis and other rheumatic conditions by
working with States and other partners to (1) increase awareness about
appropriate arthritis self-management activities, (2) expanding the
reach of programs proven to improve the quality of life for people with
arthritis and (3) decrease the overall burden of arthritis as well as
its associated disability, work and activity limitations.
Overall, the Foundation supports the public health community
recommendation to fund the CDC at $7.8 billion for fiscal year 2013.
Unfortunately, the Foundation has concerns about the CDC Arthritis
Program. The President's budget for fiscal year 2013 again, proposes to
combine existing chronic disease programs (including those for
diabetes, heart disease, arthritis, stroke and cancer) into a single
consolidated program. Last year Congress rejected a similar proposal,
and the Arthritis Foundation continues to have concerns about
consolidation. With the rising burden of arthritis and other chronic
diseases, along with the mounting fiscal pressures your panel faces,
now is not the time to undermine the extensive arthritis public health
infrastructure which has been erected across the country.
We instead request that Congress provide a slight increase ($10
million) to expand the CDC Arthritis Program to $23 million for fiscal
year 2013. These additional funds would allow the Program to expand to
10 additional States. Additional funding would allow the CDC Arthritis
Programs to expand into 10 new States. These State-based programs would
(1) increase evidence based interventions, such as the Arthritis
Foundation's Walk with Ease Program, into more communities; (2) reach
diverse populations by funding partnership activities; and (3) support
the OA Action Alliance, a coalition committed to elevating OA as a
national priority. www.oaactionalliance.org.
The Arthritis Foundation appreciates the opportunity to provide
recommendations to the Senate Labor, Health and Human Services
Committee on recommendations for fiscal year 2013.
If you have questions about these comments please don't hesitate to
contact the Arthritis Foundation. Questions about HRSA requests--Kim
Beer, Director, Government Relations, [email protected] or Maria
Spencer, Director, Federal Affairs for NIH/CDC [email protected].
______

Prepared Statement of the Alzheimer's Foundation of America
On behalf of the Alzheimer's Foundation of America (AFA), a New
York-based national nonprofit organization that unites more than 1,600
member organizations nationwide with the goal of providing optimal care
and services to individuals confronting dementia, and to their
caregivers and families, we are making the following appropriations
requests for programs impacting Alzheimer's disease research and
caregiving services in the fiscal year 2013 budget. These Federal
programs and support services are vital to advancing promising clinical
research, providing necessary respite care and promoting best practice
tools to family caregivers.
Specifically, AFA makes the following appropriations requests for
these specific agencies and programs:
National Institutes of Health (NIH).--Adequate investment in
scientific research that could lead to new treatments and cures is
critical in order to reduce long-term healthcare costs. The President's
fiscal year 2013 budget calls for an additional $80 million for
clinical research into Alzheimer's disease. AFA urges the Subcommittee
to honor the President's budget request to help fund effective
pharmaceutical therapies to prevent, cure or slow the progression of
Alzheimer's disease and provide the necessary seed money to implement
and facilitate the ambitious and laudable goals of the National Plan to
Address Alzheimer's Disease.
AFA also urges the Subcommittee to include $32 billion in total
funding for NIH, as recommended by the Ad Hoc Group for Medical
Research, in the fiscal year 2013 appropriations bill. Even if funding
remains flat, NIH's actual budget will still be effectively cut as
spending will not be able to keep pace with the predicted 3.5 percent
in biomedical inflation.
National Institute on Aging (NIA).--Since NIA is the primary agency
responsible for Alzheimer's disease research, AFA urges that the
Subcommittee include a minimum budget appropriation of $1.4 billion, an
increase of $300 million for NIA.
NIA leads the national scientific effort to understand the nature
of aging in order to promote the health and well-being of older adults,
whose numbers are projected to rise dramatically in the coming years
due to increased life expectancy and the aging of the baby boom
generation.
This funding is essential to increase the NIA's baseline to a level
consistent with comparable research initiatives conducted under the
auspices of NIH, and to support additional research into Alzheimer's
disease and related dementias.
Cures Acceleration Network (CAN).--AFA recommends $100 million to
fund this important program. CAN was established within the Office of
the Director of the NIH to aid in speeding the translation of basic
scientific discoveries into treatments for diseases like Alzheimer's
and getting them faster to market.
U.S. Department of Health and Human Service's Prevention and Public
Health Fund (PPHF).--The President's fiscal year 2013 budget request
proposes $1.25 billion from the PPHF to supplement the budgets of the
Centers for Disease Control and Prevention ($903 million), Substance
Abuse and Mental Health Services Administration ($105 million), and the
Agency for Healthcare Research and Quality ($12 million), among other
agencies. The request also proposes $80 million from the fund to
support Alzheimer's disease research and related initiatives. However,
the ``extenders bill'' (Public Law 112-96), amends the fund to allow $1
billion in fiscal year 2013, rather than the original $1.25 billion.
AFA urges the Subcommittee to maintain the President's proposed
budget request of $1.25 billion for PPHF and preserve the $80 million
earmarked for Alzheimer's disease grants. Utilizing public health funds
to pay physicians is truly a case of ``robbing Peter to pay Paul'' and
could increase overall healthcare costs if funding for preventive
services and caregiver training are slashed.
Administration on Aging programs (AoA).--AFA would like to single
out the following programs within the AoA that are critical to
individuals with Alzheimer's disease and their caregivers:
--National Family Caregiver Support Program (NFCSP).--NFCSP provides
grants to States and territories, based on their share of the
population aged 70 and over, to fund a range of supportive
services that assist family and informal caregivers in caring
for their loved ones at home for as long as possible, thus
providing a more patient-friendly and cost-effective approach
than institutional care. Last year's appropriation of $153
million cannot possibly keep up with the need for respite care
as our population ages. AFA urges that $192 million be
appropriated to support this important program.
--Lifespan Respite Care Program (LRCP).--AFA urges the Subcommittee
to commit $50 million of LRCP in fiscal year 2013. LRCP
provides competitive grants to State agencies working with
Aging and Disability Resource Centers and nonprofit State
respite coalitions or organizations to make quality respite
care available and accessible to family caregivers regardless
of age or disability by establishing State Lifespan Respite
Systems. The Lifespan Respite Care Act was signed into law in
2006, but received no funding until 2009. Last year, only $2
million was appropriated to this successful, yet deeply
underfunded program.
--Alzheimer's Disease Supportive Services Program (ADSSP).--The
President's budget requests an additional $5.5 million to
restore funding for the ADSSP, which was reduced in the fiscal
year 2012 appropriation. In addition, the request complements
the Alzheimer's Initiative recently announced by HHS, which
calls for an additional $26 million for caregiver support,
provider education, public awareness and improvements in data
infrastructure. AFA supports funding of $12 million for this
program; in addition, we ask the Subcommittee to build upon the
administration's request for funding.
Food and Drug Administration (FDA).--AFA supports funding of the
FDA at $2.656 billion, an increase of $150 million or 6 percent more
than appropriated in fiscal year 2012. FDA activities are necessary to
ensure proper evaluation and testing of pharmaceutical treatments for
Alzheimer's disease before they enter the market. In addition, the
science is becoming more complex, and FDA plays an increasingly
important and often resource-intensive role in pharmaceutical
innovation. AFA's request is in line with the appropriations request
being recommended by the Alliance for a Stronger FDA and the coalition
to Accelerate Cure/Treatments for Alzheimer's Disease (ACT-AD).
Taken together, these programs represent a lifeline to families who
care for a loved one with Alzheimer's disease and provide hope to
Americans living with the disease and those who face it in the future
that there will be funding for a cure. AFA thanks the Subcommittee for
the opportunity to present its recommendations and looks forward to
working with you through the appropriations process. Please contact
Eric Sokol, AFA's vice president of public policy, at [email protected]
if you have any questions or require further information.
______

Prepared Statement of the American Foundation for Suicide Prevention
Chairman Harkin, Ranking Member Shelby and members of the
Committee. The American Foundation for Suicide Prevention (AFSP) thanks
you for the opportunity to provide testimony on the funding needs of
Federal agencies and programs that play a critical role in suicide
prevention efforts.
AFSP is the leading national not-for-profit organization
exclusively dedicated to understanding and preventing suicide through
research, education and advocacy, and to reaching out to people with
mental disorders and those impacted by suicide. You can find more
information at www.asfp.org.
Data from the Centers for Disease Control for 2009 (latest
available) shows that suicide is the 10th leading cause of death in the
United States (36,547) and the third leading cause of death in teens
and young adults from ages 15-24. Nearly 1.1 million Americans attempt
suicide each year and another 8 million have suicidal thoughts. Suicide
in 1 year costs the United States $36 billion in lost wages and work
productivity.
In order to more effectively combat this public health crisis, AFSP
urges the Committee approve funding at the levels requested for the
following programs/agencies for fiscal year 2013:
Garrett Lee Smith Memorial Act Programs
We respectfully request that Garrett Lee Smith Memorial Act (GLSMA)
youth suicide prevention grant programs receive $48.2 million for
fiscal year 2013.
Since 2005, the Substance Abuse and Mental Health Services
Administration (SAMHSA) has awarded GLSMA grants to 45 State programs,
12 tribal programs, and 78 colleges and universities for programs to
help reduce youth suicides rates. State grantees include: Alaska,
Arizona, Colorado, Connecticut, District of Columbia, Delaware,
Florida, Georgia, Guam, Hawaii, Iowa, Idaho, Indiana, Kentucky,
Louisiana, Massachusetts, Maryland, Maine, Michigan, Missouri,
Mississippi, North Carolina, North Dakota, Nebraska, New Hampshire, New
Mexico, Nevada, New York, Ohio, Oklahoma, Oregon, Pennsylvania, Rhode
Island, South Carolina, South Dakota, Tennessee, Texas, Utah, Virginia,
Vermont, Washington, Wisconsin, West Virginia, and Wyoming.
Funding for the Act is directed to three programs administered by
SAMHSA. We request $5 million for the Suicide Prevention Technical
Assistance Center to support its mission of providing technical
assistance and support to grantees. We request $35 million for the
Youth Suicide Early Intervention and Prevention Strategies grant
program. These grants help States and tribes develop and implement
statewide youth suicide early intervention and prevention strategies
that will raise awareness and educate people about mental illness and
the risk of suicide, help young people at risk of suicide take the
first step toward seeking help, and allow States to expand access to
treatment options. Finally, we request $8.2 million to fund the Mental
and Behavioral Health Services on Campus matching-grant program for
colleges and universities to help raise awareness about youth suicide,
as well as enable those institutions to train students and faculty to
identify and intervene when youth are in crisis, and develop a system
to refer students for care.
Support Federal Investment in Suicide Prevention Research at NIMH for
Fiscal Year 2012
Strategic investments in disease research have produced declines in
deaths, and the same types of investments are necessary to reduce
deaths by suicide. In fiscal year 2011 (latest data) only $41 million
was devoted directly to suicide research. AFSP urges Congress to
increase the investment in suicide prevention research at the National
Institutes of Mental Health by 15 percent, or $6.15 million.
It is illuminating to compare the number of suicide deaths with the
number of deaths in several major disease categories against the direct
dollars spent on research in those areas (see below). In fact, the
Institute of Medicine, in their 2002 report ``Reducing Suicide: A
National Imperative,'' stated the following: ``There is every reason to
expect that a national consensus to declare war on suicide and to fund
research and prevention at a level commensurate with the severity of
the problem will be successful, and will lead to highly significant
discoveries as have the wars on cancer, Alzheimer's disease, and
AIDS.''

Maintain Vital Funding for SAMHSA Suicide Prevention Programs and
Mental Health Services
As the lead Government agency charged with implementation of
suicide prevention initiatives, AFSP urges this Committee to provide
$1.022 billion for SAMHSA's Center for Mental Health Services in fiscal
year 2013. By this action Congress will recognize the important role
SAMHSA plays in healthcare delivery and mental health services.
As the lead Government agency charged with implementation of
suicide prevention initiatives, SAMHSA has supported the establishment
of a national toll-free hotline (the National Suicide Prevention
Lifeline), a technical assistance center (the Suicide Prevention
Resource Center), and a youth suicide prevention grant program for
States and colleges (authorized and funded under the Garrett Lee Smith
Memorial Act). Since its launch in January 2005, the Suicide Prevention
Lifeline has answered more than 1 million calls and has 140 active
crisis centers in 48 States. Beginning in 2008, SAMHSA's National
Survey on Drug Use and Health asked respondents about suicide attempts
and whether or not they had previously acknowledged major depression.
This was an important first step forward in suicide surveillance,
promoting greater attention to the interrelationship of suicide,
substance abuse and depression. Moreover, the Agency also has been
supporting the identification, development and promotion of best
practices in suicide prevention, focusing on risk and protective
factors related to suicide, with particular attention to mental health
and substance abuse issues affecting suicide risk.
Support Federal Investment in Data Collection in Fiscal Year 2013
To design effective suicide prevention strategies, we must first
have complete, accurate and timely information about deaths by suicide.
The National Violent Death Reporting System (NVDRS) provides this
information, which is essential to improve State and Federal suicide
prevention activities. Current funding of $3.5 million allows only 18
States to participate in this program. This Committee approved an
additional $1.5 million in fiscal year 2011; however, the bill never
got signed into law. AFSP urges this Committee to appropriate $5
million for the NVDRS in fiscal year 2013.

Provide Funding for Depression Centers of Excellence (DCOE)
This Committee included $10 million for the DCOE in the fiscal year
2011 mark up as a down payment toward studying Depression, the most
common psychiatric diagnosis associated with suicide. AFSP urges
Congress to appropriate funds to the DCOE at the highest levels
possible in fiscal year 2013.
Depression Centers of Excellence would increase access to the most
appropriate and evidence-based depression care and develop and
disseminate evidence-based treatment standards to improve accurate and
timely diagnosis of depression and bipolar disorders. Additionally,
they would create a national database for large-sample effectiveness
studies and a repository of evidence-based interventions and programs
for depression and bipolar disorders. They would also utilize the
network of centers as an ongoing national resource for public and
professional education and training, with the goal of advancing
knowledge and eradicating stigma of these mental disorders.
Chairman Harkin, Ranking Member Shelby and Members of the
Committee. AFSP once again thanks you for the opportunity to provide
testimony on the funding needs of Federal Agencies and programs that
play a critical role in suicide prevention efforts.
Suicide robs families, communities and societies of tens of
thousands of its citizens. In a single year, in the United States
alone, suicide is responsible for the deaths of nearly 37,000 people of
all ages and costs an estimated $36 billion annually in lost wages and
work productivity. With your help, we can assure those tasked with
leading the Federal Government's response to this public health crisis
will have the resources necessary to effectively prevent suicide.
______

Prepared Statement of the American Heart Association
Despite considerable progress in the fight against heart disease,
stroke and other forms of cardiovascular disease, CVD remains our
Nation's No. 1 and most costly killer, with one person dying from it
every 39 seconds. CVD is also a major cause of disability, costing our
country an estimated $298 billion in medical expenses and lost
productivity in 2008. Today, an estimated 83 million adults suffer from
CVD. In addition, risk factors for CVD, such as obesity, diabetes, and
high blood pressure, are on the rise. At age 40, the lifetime risk for
CVD is 2 in 3 for men and more than 1 in 2 for women. Many are
surprised to learn that CVD is the leading cause of death in women,
outweighing cancer and other diseases.
Unfortunately, these startling statistics will likely worsen. A
recent study projects that by the year 2030, more than 40 percent of
adults in the United States will live with the effects of CVD at a cost
exceeding $1 trillion annually that would impoverish both the healthy
and the ill. The graying of America's baby boomers along with the
volatile growth in medical spending are the key drivers of these rising
costs. Compounding this dire situation, heart disease and stroke
prevention, research, and treatment programs remain not only woefully
underfunded, but there is no steady and dependable stream of resources
for the National Institutes of Health (NIH) to mount a long-term
strategy to fight this terrible disease, enhance prevention and foster
best care.
CVD is the No. 1 killer in each State, except Alaska. Yet, research
has shown that it is mostly preventable when treatable risk factors,
such as high blood pressure and smoking, are addressed.
Where one lives can affect survival from a deadly type of heart
disease--sudden cardiac arrest. Only 21 States received fiscal year
2010 funds for Health Resources and Services Administration's Rural and
Community Access to Emergency Devices Program (HRSA) to save lives from
SCA.
To avoid a looming CVD crisis, American Heart Association
challenges Congress to prioritize prevention. Evidence-based prevention
programs must reach people where they live, work and play. Prevention
must be a keystone to encourage early age heart healthy and stroke-free
habits.
Thanks to the insight of Department of Health and Human Services,
heart attack and stroke prevention will likely improve. AHA proudly
partners with HHS to effect and achieve Million Hearts. Co-led by
Centers for Disease Control and Prevention (CDC) and Centers of
Medicare and Medicaid Services, this public-private partnership seeks
to prevent 1 million heart attacks and strokes in 5 years.
In this time of budgetary belt-tightening, AHA lauds Congress for
providing a glimmer of hope to the 1-in-3 adult CVD sufferers in the
United States by wisely investing in the NIH, HRSA, CDC, and in the
Prevention and Public Health Fund for fiscal year 2012. While we
advocated for higher increases, these funds will help improve our
Nation's physical and fiscal health. Stable and sustained fiscal year
2013 funding is critical to advance heart disease and stroke research,
prevention and treatment. However, the failure of the Joint Select
Committee on Deficit Reduction to agree on a plan to reduce deficits
will result in automatic across-the-board cuts in January 2013. Based
on current projections, nearly every CVD research and prevention
program will be cut by 9 percent.
funding recommendations: investing in the health of our nation
Sadly, promising research remains unfunded that could stem the
increase of heart disease and stroke risk factors. Also, too many
Americans die from CVD while proven prevention efforts beg for
resources for widespread implementation. Now is the time to boost
research, prevention and treatment of our Nation's leading and most
costly killer. If Congress fails to capitalize on the progress of the
past 50 years, Americans will pay more in lives lost and healthcare
costs. Our recommendations below address the issues in a thorough and
fiscally responsible way.
Capitalize on Investment for the National Institutes of Health (NIH)
NIH-funded research prevents and cures disease, generates economic
growth, fosters innovation, and preserves the U.S. role as the world
leader in pharmaceuticals and biotechnology. NIH sponsored studies have
revolutionized patient care. Further, NIH remains the single largest
funder of basic research--the starting point for all medical advances
and an essential function of the Federal Government. The private sector
cannot fill this gap because there is no guarantee that this type of
research will lead to an instant or profitable product or cure.
NIH research produces major returns on investment by developing new
technologies that create high-paying jobs. Also, the typical NIH grant
supported about seven mainly high-tech full-time or part-time jobs in
fiscal year 2007. In fiscal year 2010, NIH created nearly a half
million U.S. jobs and produced about $70 billion in economic activity.
Each dollar NIH distributes in a grant returns $2.21 in goods and
services to the local community in 1 year.
However, with sequestration looming, NIH faces an estimated 9
percent or $2.8 billion cut, reducing its budget to the 2004 level.
Since NIH invests in each State and in 90 percent of congressional
districts, thousands of jobs will be lost, with a ripple effect on our
fragile economic recovery. Such draconian budget cuts will both
endanger NIH's role as the world leader in medical research--when our
competitors are escalating their investment--and will severely delay
research and development of disease treatments and cures.
American Heart Association Advocates.--We ask for a fiscal year
2013 appropriation of $32 billion for NIH to build on successes to save
lives, improve health, spur our economy and spark innovation. Also, we
urge Congress to protect NIH from across-the-board cuts for the
aforesaid reasons.
Enhance Funding for NIH Heart and Stroke Research: A Proven and Wise
Investment
From 1998 to 2008, death rates for coronary heart disease and
stroke fell nearly 29 percent and 35 percent respectively. Yet, more
must be done to improve lives and to prevent these illnesses. Declines
in these deaths are directly linked to NIH research, with scientists
now on the verge of exciting discoveries that could lead to game-
changing treatments and even cures. For example, the largest U.S.
stroke rehabilitation study showed that intensive, home-based physical
therapy as well as a more complex program using a body weight-supported
treadmill can improve walking. Both programs resulted in superior
walking ability as compared to usual care.
One of the largest-ever NIH-sponsored analyses of CVD lifetime
risks demonstrated that middle-age adults with one or more classic CVD
risk factors have a much greater chance of suffering a major CVD event.
Further, it showed traditional risk factors predicted one's long-term
development of CVD more than just age. Also, NIH studies identified 29
genetic variants that influence blood pressure, providing new clues for
control, and demonstrated that those at highest risk of a second stroke
should undergo aggressive medical treatment rather than with a stent.
In addition to saving lives, NIH research can cut healthcare costs.
For example, the first NIH tPA drug trial resulted in a 10-year net
$6.47 billion drop in stroke healthcare costs. Also, the Stroke
Prevention in Atrial Fibrillation Trial 1 produced a 10-year net
savings of $1.27 billion.
Cardiovascular Disease Research: National Heart, Lung, and Blood
Institute (NHLBI)
In spite of lower mortality rates and many promising avenues, there
is still no cure for CVD. With an aging population, demand will only
increase to find better ways for Americans to live healthy and
productive lives, despite CVD. Stable and sustained NHLBI funding is
needed to build on investments that provided grants to use genetics to
identify and treat those at greatest risk of heart disease; hasten drug
development to reduce high cholesterol and blood pressure; and create
tailored strategies to treat, slow or prevent heart failure. Other key
studies include an analysis of whether lower blood pressure than now
recommended further reduces risk of heart disease, stroke, and
cognitive decline. Sustained critical funding will allow for aggressive
implementation of other priority initiatives in the cardiovascular
strategic plan.
Stroke Research: National Institute of Neurological Disorders and
Stroke (NINDS)
An estimated 795,000 Americans will suffer a stroke this year, and
more than 134,000 will die from one. Many of the 7 million survivors
face severe physical and mental disabilities and emotional distress. In
addition to the physical and emotional toll, stroke cost a projected
$34 billion in medical expenses and lost productivity for 2008. The
future does not bode well. A recent study projects stroke prevalence
will increase 25 percent over the next 20 years, striking more than 10
million individuals with direct medical costs rising 238 percent over
the same time period.
Stable and sustained NINDS funding is required to capitalize on
investments to prevent stroke, protect the brain from damage and
enhance rehabilitation. This includes initiatives to: (1) determine if
MRI brain imaging can assist in selecting stroke victims who could
benefit from the clot busting drug tPA beyond the 3-hour treatment
window; (2) assess chemical compounds that might shield brain cells
during a stroke; and (3) advance stroke rehabilitation by studying if
the brain can be helped to ``rewire'' itself after a stroke. Enhanced
funding will also allow for proactive initiation and implementation of
the NINDS' novel stroke planning process to develop priorities to
advance the most promising prevention, treatment and recovery research.
American Heart Association Advocates.--While AHA supports increased
funding for all the 18 NIH Institutes and centers that conduct heart
and stroke research, we specifically recommend that NHLBI be funded at
$3.214 billion and NINDS at $1.698 billion for fiscal year 2013.
Increase Funding for the Centers for Disease Control and Prevention
(CDC)
Prevention is the best way to protect the health of Americans and
reduce CVD's costs. Yet, effective prevention strategies are not being
implemented due to inadequate funds. In addition to conducting research
and evaluation and developing a surveillance system, the Division for
Heart Disease and Stroke Prevention (DHDSP) manages Sodium Reduction
Communities, Paul Coverdell National Acute Stroke Registry, and State
Heart Disease and Stroke Prevention Program. The State program also
promotes the ``A-B-C-S'' of prevention: appropriate aspirin therapy,
blood pressure control, cholesterol management and smoking cessation.
The DHDSP manages WISEWOMAN that serves uninsured and under-insured
low-income women ages 40 to 64. It helps them avoid heart disease and
stroke by providing preventive health services, referrals to local
healthcare providers--as needed--and lifestyle counseling and
interventions tailored to risk factors to promote lasting behavior
change. From July 2008 to June 2010, it served over 70,000 women. In
this timeframe, 89 percent of them were found to have at least one risk
factor and 28 percent had three or more. Yet, over 43,000 of them
participated in at least one session to address them.
American Heart Association Advocates.--AHA concurs with the CDC
Coalition in asking for $7.8 billion for CDC's ``core programs.'' We
recommend $75 million to bolster the DHDSP and $37 million for
WISEWOMAN to add States and serve more women. We also join with the
Friends of the NCHS in asking for $162 million for the National Center
for Health Statistics.
Restore Funding for Rural and Community Access to Emergency Devices
(AED) Program
About 90 percent of sudden cardiac arrest victims die outside of a
hospital. However, prompt CPR and defibrillation, with an automated
external defibrillator, can more than double their chances of survival.
Communities with comprehensive AED programs have reached survival rates
of about 40 percent. HRSA's Rural and Community AED Program provides
competitive grants to States to buy AEDs, train lay rescuers and first
responders in their use and place AEDs where SCA is likely to occur--
and with tangible results. From September 2007 to August 2008, 3,051
AEDs were bought and 10,287 people were trained. Due to this effort,
almost 800 patients were saved between August 1, 2009 and July 31,
2010. Requests for these AED grant dollars have exceeded available
limited funds. In fiscal year 2009, less than 8 percent of the
applicants were funded and only 21 States received funds in fiscal year
2010. We applaud Congress for restoring this program to its fiscal year
2010 level for fiscal year 2012. However, HRSA transferred $1.4 million
to the AIDS Drug Assistance program, thereby diminishing the positive
impact of the funding increase.
American Heart Association Advocates.--We ask for a fiscal year
2013 appropriation of $8.927 million to restore the Rural and Community
AED Program to its fiscal year 2005 level as 47 States were funded.
Increase Funding for the Agency for Healthcare Research and Quality
(AHRQ)
AHRQ develops scientific evidence to improve healthcare and
provides patients and caregivers with vital evidence to make the right
decisions about their care. AHRQ's research also enhances quality and
efficiency of healthcare.
American Heart Association Advocates.--AHA joins Friends of AHRQ in
advocating for $400 million for AHRQ to preserve its vital initiatives.
conclusion
Cardiovascular disease continues to wreak a deadly, disabling and
costly toll on Americans. Our funding recommendations for NIH, CDC and
HRSA outlined above will save lives and cut rising healthcare costs. We
urge Congress to seriously consider our proposals that represent a wise
investment for our Nation and for the health and well-being of this and
future generations.
______

Prepared Statement of the Ad Hoc Group for Medical Research
The Ad Hoc Group for Medical Research is a coalition of more than
300 patient and voluntary health groups, medical and scientific
societies, academic and research organizations, and industry. We
appreciate the opportunity to submit this statement in support of
enhancing the Federal investment in biomedical, behavioral, and
population-based research conducted and supported by the National
Institutes of Health (NIH).
We are deeply grateful to the Subcommittee for its long-standing
and bipartisan leadership in support of NIH. These are difficult times
for our Nation and for people all around the globe, but science and
innovation are the key to a better future. To ensure continued
improvement of our Nation's health and to sustain our global leadership
in medical research, the Ad Hoc Group for Medical Research recommends
at least $32 billion for NIH in fiscal year 2013.
NIH: A Public-Private Partnership to Save Lives and Provide Hope
The partnership between NIH and America's scientists, medical
schools, teaching hospitals, universities, and research institutions is
a unique and highly productive relationship, leveraging the full
strength of our Nation's research enterprise to foster discovery,
improve our understanding of the underlying cause of disease, and
develop the next generation of medical advancements. More than 83
percent of NIH research funding is awarded to more than 3,000 research
institutions located in every State. These are funded through almost
50,000 competitive, peer-reviewed grants and contracts to more than
350,000 researchers.
Research funded by NIH has contributed to nearly every medical
treatment, diagnostic tool, and medical device developed in modern
history, and we are all enjoying longer, healthier lives thanks to the
Federal Government's wise investment in this lifesaving agency. From
the major advances--including a nearly 70 percent reduction in the
death rate for coronary heart disease and stroke--to moving stories of
personalized medicine--such as children with rare diseases like dopa-
responsive dystopia, whose prognosis has been transformed from severely
disabled to happy and healthy through genomic medicine--NIH's role in
improving human health has been extraordinary. For example:
--Between 1990 and 2007, death rates in the United States for all
cancers combined decreased by 22 percent for men and 14 percent
for women, resulting in 898,000 fewer deaths from the disease
during this time period;
--Genomic advances have led us to the brink of approval for a new
drug for cystic fibrosis, which tragically affects 30,000
Americans, whose current average life expectancy is only 37
years;
--Remarkable breakthroughs in HIV/AIDS announced within the past year
have put the possibility of an AIDS-free world within sight;
and
--We are within reach of a universal influenza vaccine, eliminating
the need for annual flu shots.
NIH research impacts the full spectrum of the human experience,
resulting in a 40 percent decline in infant mortality over the past 20
years, as well as a 30 percent decrease in chronic disability among
seniors. For patients and their families, the scientific opportunities
addressed by NIH provide hope.
NIH is the world's premiere supporter of peer-reviewed,
investigator-initiated basic research. This fundamental understanding
of how disease works and insight into the cellular, molecular, and
genetic processes underlying life itself, including the impact of
social environment on these processes, underpin our ability to conquer
devastating illnesses. The application of the results of basic research
to the detection, diagnosis, treatment, and prevention of disease is
the ultimate goal of medical research. Ensuring a steady pipeline of
basic research discoveries while also supporting the translational
efforts absolutely necessary to bring the promise of this knowledge to
fruition requires a sustained investment in NIH.
NIH Supports Jobs, the Economy, and Innovation
The research supported by NIH drives not only medical progress but
also local and national economic activity, creating skilled, high-
paying jobs and fostering new products and industries. A report
released in March by United for Medical Research showed NIH directly
and indirectly supported more than 432,000 jobs nationwide, while
generating $62.1 billion in new economic activity. Another report,
produced by Tripp Umbach, calculated a $2.60 return on investment for
every dollar spent on research at American medical schools and teaching
hospitals.
At the same time, the private sector depends on the basic research
funded by NIH to fuel the next generation of drugs, diagnostics, and
devices. Chris Viehbacher, CEO of Sanofi, recently warned of the
negative impact on the drug industry that withdrawal of support for NIH
would have, saying, ``I don't think there's enough appreciation in the
United States about what a jewel the NIH is. It's fundamentally
important to health everywhere in the world that the NIH be properly
funded.''
NIH also plays a significant role in supporting the next generation
of innovators, the young and talented scientists and physicians who
will be responsible for the breakthroughs of tomorrow. As competition
for NIH grant funding reaches historically high levels, there is a real
and present danger of losing our best and brightest minds at a time
when scientific opportunity has never been better. Only with an
increase in funding can NIH continue to attract the highest quality
research talent from all over the world. The challenges of maintaining
a cadre of physician-scientists to facilitate translation of basic
research to human medicine, ensuring a biomedical workforce that
reflects the racial and gender diversity of our citizenry, and
maximizing our Nation's human capital to solve our most pressing health
problems will only be addressed through continued support of NIH.
NIH is Critical to U.S. Competitiveness
While the United States maintains our preeminence in biomedical
research, we must not take for granted the agency that established us
as the world life sciences leader. Even as we have seen NIH's budget
eroded by inflation--with a purchasing power 20 percent lower than it
was in fiscal year 2003--other nations have emulated our example and
begun to invest in what can only be described as a life science
revolution. A 2011 report by the Milken Institute warned that the
United States was beginning to lose its competitive edge in the
biomedical sciences, stating, ``Europe and Japan are working to close
the gap, while China, India, and Singapore have made impressive strides
. . . These efforts are part of larger economic development plans that
increasingly focus on cultivating biomedical innovation for its
economic contributions and high-wage jobs.'' To illustrate this, a
single Chinese company, BGI (formerly the Beijing Genomics Institute)
has recently acquired more genomic sequencing capacity in terms of
machines and people than the entire United States sequencing capacity
combined.
In the past 6 months alone, we have heard ambitious pledges from
India, the European Union, Russia, and China to commit substantial
funding to research, even as the world struggles to recover from
unprecedented fiscal challenges. Talented medical researchers from all
over the world, who once flocked to the United States for training and
stayed to contribute to our innovation-driven economy, are now
returning to better opportunities in their home countries.
According to a new national public opinion poll commissioned by
Research!America, more than half of likely voters doubt that the United
States will be the world leader in science, technology, and healthcare
by the year 2020. The findings reveal deep concerns among Americans
about the country's ability to maintain its world-class status in
innovation, research and development before the next decade.
We cannot afford to lose that intellectual capacity, much less the
jobs and industries fueled by medical research. The United States has
been the leader in medical research because of bipartisan recognition
of the critical role played by NIH. To maintain our dominance, we must
reaffirm this commitment to provide NIH the funds needed to maintain
our competitive edge.
NIH: A Priority in Challenging Times
The Ad Hoc Group's funding recommendation represents the minimum
investment necessary to avoid further loss of promising research and at
the same time allows the NIH's budget to keep pace with biomedical
inflation. Even before adjusting for inflation, enacted spending bills
in recent years have imposed cuts on the NIH budget and the agency can
now fund only one in six highly meritorious grant applications it
receives--the lowest in history. Accordingly, NIH's ability to sustain
current research capacity and encourage promising new areas of science
is significantly limited. More distressing, the looming sequestration
mandated by the Budget Control Act threatens to continue this trend
with further cuts estimated between 7 and 10 percent in fiscal year
2013 alone.
We recognize the tremendous challenges facing our Nation's economy
and acknowledge the difficult decisions that must be made to restore
our country's fiscal health. Nevertheless, we believe strongly that NIH
is part of the solution to the Nation's economic restoration, and we
are thankful that the Subcommittee has recognized that role in its past
support. Strengthening our commitment to medical research, through
funding NIH, is a critical element in ensuring the health and well-
being of the American people and our economy.
Therefore, the Ad Hoc Group for Medical Research respectfully
requests that NIH be recognized as an urgent national priority as the
Subcommittee prepares the fiscal year 2013 appropriations bill.
______

Prepared Statement of the American Indian Higher Education Consortium
This statement includes the fiscal year 2013 recommendations of the
Nation's Tribal Colleges and Universities (TCUs), covering three areas
within the Department of Education.
higher education act programs
Strengthening Developing Institutions.--Titles III and V of the
Higher Education Act support institutions that enroll large proportions
of financially disadvantaged students and that have low per-student
expenditures. TCUs, funded under Title III-A Sec. 316, which are truly
developing institutions, are providing quality higher education
opportunities to some of the most rural, impoverished, and historically
underserved areas of the country. The goal of HEA--Titles III/V
programs is ``to improve the academic quality, institutional management
and fiscal stability of eligible institutions, in order to increase
their self-sufficiency and strengthen their capacity to make a
substantial contribution to the higher education resources of the
Nation.'' The TCU Title III-A program is specifically designed to
address the critical, unmet needs of their American Indian students and
communities, in order to effectively prepare them to succeed in a
global, competitive workforce. Yet, in fiscal year 2011 this critical
program was cut by over 11 percent and by another 4 percent in fiscal
year 2012. The TCUs urge the Subcommittee to appropriate $30 million in
fiscal year 2013 for HEA Title III-A section 316, which is slightly
less than the fiscal year 2010 appropriated funding level.
TRIO.--Retention and support services are vital to achieving the
national goal of having the highest percentage of college graduates
globally by 2020. TRIO programs, such as Student Support Services and
Upward Bound were created out of recognition that college access is not
enough to ensure advancement and that multiple factors work to prevent
the successful completion of higher education for many low-income and
first-generation students and students with disabilities. Therefore, in
addition to maintaining the maximum Pell Grant award level, it is
critical that Congress also sustains student assistance programs such
as Student Support Services and Upward Bound so that low-income and
minority students have the support necessary to allow them to remain
enrolled in and ultimately complete their postsecondary courses of
study.
Pell Grants.--The importance of Pell Grants to TCU students cannot
be overstated. A majority of TCU students receive Pell Grants,
primarily because student income levels are so low and they have far
less access to other sources of financial aid than students at State-
funded and other mainstream institutions. Within the TCU system, Pell
Grants are doing exactly what they were intended to do--they are
serving the needs of the lowest income students by helping them gain
access to quality higher education, an essential step toward becoming
active, productive members of the workforce. However, beginning July 1,
2012, new Department of Education regulations will be imposed, limiting
Pell eligibility to 12 full-time semesters. This change in policy will
impede many TCU students from attaining a postsecondary degree, which
is widely recognized as being critical for access to, and advancement
in, today's highly technical workforce. Recent placement tests
administered at TCUs indicated that 62 percent of first-time entering
students required remedial math, 55 percent needed remedial writing,
and 46 percent required remedial reading. Students requiring
remediation can use as much as a full year of eligibility enhancing
their math, and or reading/writing skills, thereby hampering their
future postsecondary degree plans. A prior national goal was to provide
access to quality higher education opportunities for all students
regardless of economic means, at which TCUs have been extremely
successful. While the new national goal is to produce the graduates
with postsecondary degrees by 2020, this policy does not advance that
goal. On the contrary, the new regulations will cause many low-income
students to once again abandon their dream of a postsecondary degree,
as they will simply not have the means to pursue it. The goal of a
well-trained technical workforce will be greatly compromised. This new
policy recalls the adage ``penny wise-pound foolish.'' The TCUs urge
the Subcommittee to continue to fund this essential program at the
highest possible level, and to direct the Secretary of Education to
implement a process to waive the very restrictive 12 semester Pell
Grant eligibility for TCU students.
perkins career and technical education programs
Tribally Controlled Postsecondary Career and Technical
Institutions.--Section 117 of the Carl D. Perkins Career and Technical
Education Act provides a competitively awarded grant opportunity for
tribally chartered and controlled career and technical institutions.
AIHEC requests $8,200,000 to fund grants under Sec. 117 of the Perkins
Act, a modest increase of $54,000 over the President's fiscal year 2013
budget request.
Native American Career and Technical Education Program (NACTEP).--
NACTEP (Sec. 116) reserves 1.25 percent of appropriated funding to
support American Indian career and technical programs. The TCUs
strongly urge the Subcommittee to continue to support NACTEP, which is
vital to the continuation of career and technical education programs
offered at TCUs that provide job training and certifications to remote
reservation communities.
american indian adult and basic education (office of vocational and
adult education)
This program supports adult basic education programs for American
Indians offered by State and local education agencies, Indian tribes,
agencies, and TCUs. Despite a lack of funding, TCUs must find a way to
continue to provide much-in-demand adult basic education classes for
those American 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, even learn to read. There is an extensive need for adult
basic educational programs, and TCUs must have adequate and stable
funding to provide these essential activities. TCUs request that the
Subcommittee direct that $8 million of the funds appropriated annually
for the Adult Education State Grants be made available to make
competitive awards to TCUs to help meet the growing demand for adult
basic education and remediation program services on their respective
reservations.
justifications for fiscal year 2013 appropriations requests for tcus
Tribal colleges and our students are already disproportionately
impacted by efforts to reduce the Federal budget deficit and control
Federal spending. The final fiscal year 2011 continuing resolution
eliminated all of the Department of Housing and Urban Development's MSI
community-based programs, including a critical TCU-HUD facilities
program. TCUs were able to maximize leveraging potential, often
securing even greater non-Federal funding to construct and equip Head
Start and early childhood centers; student and community computer
laboratories and public libraries; and student and faculty housing in
rural and remote communities where few or none of these facilities
existed. Important STEM programs, operated by the National Science
Foundation and NASA were cut, and for the first time since the NSF
program was established in fiscal year 2001, no new TCU-STEM awards
were made in fiscal year 2011. Additionally, TCUs and their students
suffer the impact of cuts to programs such as GEAR-UP, TRIO, SEOG, and
are greatly impacted by the new highly restrictive Pell eligibility
criteria more profoundly than mainstream institutions of higher
education, which can realize economies of scale due to large
endowments, alternative funding sources, including the ability to
charge higher tuition rates and enroll more financially stable
students, and access to affluent alumni. The loss of opportunity that
cuts to DoEd, HUD, and NSF programs represent to TCUs, and to other
MSIs, is magnified by cuts to workforce development programs within the
Department of Labor, nursing and allied health professions tuition
forgiveness and scholarship programs operated by the Department of
Health and Human Services, and an important TCU-based nutrition
education program planned by USDA. Combined, these cuts strike at the
most economically disadvantaged and health-challenged Americans.
We respectfully ask the Members of the Subcommittee for their
continued support of the nation's TCUs and full consideration of our
fiscal year 2013 appropriations needs and recommendations.
______

Prepared Statement of the Alliance of Information and Referral Systems
The Alliance of Information and Referral Systems (AIRS) thanks you
for providing the opportunity to submit testimony as you consider an
fiscal year 2013 Labor-HHS, Education appropriations bill. AIRS is the
national voice of Information and Referral/Assistance (I&R/A) and
includes a membership of over 1,200 I&R/A providers in both public and
private organizations, which includes 2-1-1 providers. Our primary
purpose for submitting this testimony is to urge you to support Title
IIIB--Supportive Services funding of the Older Americans Act (OAA) as
this provides Federal funding to the States for I&R/A.
As you know, in the President's fiscal year 2011 and fiscal year
2012 budget, an increase of $48 million was proposed for Title IIIB of
the OAA. AIRS was disappointed that an increase to IIIB was not
recommended in the President's fiscal year 2013 budget. Given the
economic climate, Information and Referral/Assistance (I&R/A) is a
lifeline, bringing people and services together. Last year, AIRS
members answered about 25 million calls for help. A top focus of the
calls included housing, food, caregiver support, mental health,
healthcare, transportation, employment, education and disaster
services.
Comprehensive and specialized I&R/A programs help people in every
community and operate as a critical component of the health and human
services delivery system. I&R/A organizations have databases of
programs and services and disseminate information through a variety of
channels to individuals and communities.
While our preference is for an increase of $48 million to be
reflected in this year's appropriations, at a minimum, we encourage you
to maintain the funding level of $367 million for Title III B of the
Older Americans Act. Thank you for your consideration as well as the
opportunity to submit this testimony.
______

Prepared Statement of the American Lung Association
The American Lung Association is pleased to present our
recommendations for fiscal year 2013 to the Labor, Health and Human
Services, and Education Appropriations Subcommittee. The public health
and research programs funded by this committee will prevent lung
disease and improve and extend the lives of millions of Americans.
Founded in 1904 to fight tuberculosis, the American Lung Association is
the oldest voluntary health organization in the United States. The
American Lung Association is the leading organization working to save
lives by improving lung health and preventing lung disease through
education, advocacy and research.
a sustained investment is necessary
Mr. Chairman, investments in prevention and wellness pay near- and
long-term dividends for the health of the American people. A recent
study published in the American Journal of Public Health showed
Washington State saved $5 in tobacco-related hospitalization costs for
every $1 the State invested in its tobacco control and prevention
program from 2000-2009. In order to save healthcare costs in the long-
term, investments must be made in proven public health interventions
including tobacco control, asthma programs and TB infrastructure.
Lung Disease
Each year, more than 400,000 Americans die of lung disease. It is
America's number three killer, responsible for 1 in every 6 deaths.
More than 33 million Americans suffer from a chronic lung disease and
it costs the economy an estimated $173 billion each year. Lung diseases
include: lung cancer, asthma, chronic obstructive pulmonary disease
(COPD), tuberculosis, pneumonia, influenza, sleep disordered breathing,
pediatric lung disorders, occupational lung disease and sarcoidosis.
Improving Public Health and Maintaining Our Investment in Medical
Research
The American Lung Association strongly supports increasing overall
CDC funding to $7.8 billion in order for CDC to carry out its
prevention mission and to assure an adequate translation of new
research into effective State and local programs.
The United States must also maintain its commitment to medical
research. While our focus is on lung disease research, we support
increasing the investment in research across the entire NIH with
particular emphasis on the National Heart, Lung and Blood Institute,
the National Cancer Institute, the National Institute of Allergy and
Infectious Diseases, the National Institute of Environmental Health
Sciences, the National Institute of Nursing Research, the National
Institute on Minority Health and Health Disparities and the Fogarty
International Center.
The Prevention and Public Health Fund
The American Lung Association strongly supports the Prevention and
Public Health Fund established in the Affordable Care Act and asks the
Committee to oppose any attempts to divert or use the Fund for any
purposes other than what it was originally intended. The Prevention
Fund provides funding to critical public health initiatives, like
community programs that help people quit smoking, support groups for
lung cancer patients, and classes that teach people how to avoid asthma
attacks. Money from the Prevention Fund has also been used to pay for
the new CDC media campaign ``Tips from Former Smokers'' which resulted
in over 33,000 people calling 1-800-QUIT-NOW during the campaign's
first week of air. This represents a 128 percent increase in calls from
the previous week.
Tobacco Use
Tobacco use is the leading preventable cause of death in the United
States, killing more than 443,000 people every year. Over 46 million
adults and 3.6 million youth in the United States smoke. Annual
healthcare and lost productivity costs total $193 billion in the United
States each year.
Given the magnitude of the tobacco-caused disease burden and how
much of it can be prevented, the CDC Office on Smoking and Health (OSH)
should be much larger and better funded. Historically, Congress has
failed to invest in tobacco control--even though public health
interventions have been scientifically proven to reduce tobacco use,
the leading cause of preventable death in the United States. This
neglect cannot continue if the Nation wants to prevent disease, promote
wellness and reduce healthcare costs. The American Lung Association
supports the President's budget request and urges that $197.1 million
be appropriated to OSH for fiscal year 2013.
Asthma
Asthma is highly prevalent and expensive. More than 25 million
Americans currently have asthma, of whom 7 million are children. Asthma
prevalence rates are over 37 percent higher among African-Americans
than whites. Asthma is also the third leading cause of hospitalization
among children under the age of 15 and is a leading cause of school
absences from chronic disease. Asthma costs our healthcare system over
$50.1 billion annually and indirect costs from lost productivity add
another $5.9 billion, for a total of $56 billion annually.
The American Lung Association strongly opposes the proposal in the
President's budget request that would merge the National Asthma Control
Program with the Healthy Homes/Lead Poisoning Prevention Program and
further reduce funding for both. The Lung Association asks this
Committee to retain the National Asthma Control Program as a stand-
alone program and appropriate $25.3 million to it in fiscal year 2013.
In addition, we recommend that the National Heart, Lung, and Blood
Institute receive $3.214 billion and the National Institute of Allergy
and Infectious Diseases receive $4.689 billion, and that both agencies
continue their investments in asthma research in pursuit of treatments
and cures.
Lung Cancer
Over 370,000 Americans are living with lung cancer. During 2011,
approximately 221,000 new cases of lung cancer were diagnosed, and in
2008, over 158,000 Americans died from lung cancer. Survival rates for
lung cancer tend to be much lower than those of most other cancers.
African-Americans are more likely to develop and die from lung cancer
than persons of any other racial group.
Lung cancer receives far too little attention and focus. Given the
magnitude of lung cancer and the enormity of the death toll, the
American Lung Association strongly recommends that the NIH and other
Federal research programs commit additional resources to lung cancer.
The National Lung Screening Trial showed promising results for a small
segment of the population at high risk for developing lung cancer but
more research must be done in order to see if others would similarly
benefit. We support a funding level of $5.296 billion for the National
Cancer Institute and urge more attention and focus on lung cancer.
Chronic Obstructive Pulmonary Disease (COPD)
COPD is the third leading cause of death in the United States. It
has been estimated that 13.1 million patients have been diagnosed with
some form of COPD and as many as 24 million adults may suffer from its
consequences. In 2008, 137,693 people in the United States died of
COPD. The annual cost to the Nation for COPD in 2010 was projected to
be $49.9 billion. We strongly support funding the National Heart, Lung,
and Blood Institute and its lifesaving lung disease research program at
$3.214 billion. The American Lung Association also asks the Committee
to continue its support of the National Heart, Lung, and Blood
Institute working with the CDC and other appropriate agencies to
prepare a national action plan to address COPD, which should include
public awareness and surveillance activities.
Influenza
Public health experts warn that 209,000 Americans could die and
865,000 would be hospitalized if a moderate flu epidemic hits the
United States. To prepare for a potential pandemic, the American Lung
Association supports funding the Federal CDC Influenza efforts at
$159.6 million.
Tuberculosis (TB)
There are an estimated 10 million to 15 million Americans who carry
latent TB infection, and it is estimated that 10 percent of these
individuals will develop active TB disease. In 2010, there were 11,182
cases of active TB reported in the United States. While declining
overall TB rates are good news, the emergence and spread of multi-drug
resistant TB and totally drug resistant TB also poses a significant
public health threat. We request that Congress increase funding for
tuberculosis programs at CDC to $243 million for fiscal year 2013.
Additional Priorities
We strongly encourage improved disease surveillance and health
tracking to better understand diseases like asthma. We support an
appropriations level of $35 million for the Environment and Health
Outcome Tracking Network. We strongly recommend at least $52.8 million
in funding for the Healthy Communities program and that it remain a
separate, stand-alone program. This program supports investments in
communities to identify and improve policies and environmental factors
influencing health and reduce the burden of chronic diseases.
conclusion
Mr. Chairman, lung disease is a continuing, growing problem in the
United States. It is America's number three killer, responsible for 1
in 6 deaths. Progress against lung disease is not keeping pace with
progress against other major causes of death and more must be done. The
level of support this committee approves for lung disease programs
should reflect the urgency illustrated by the impact of lung disease.
fiscal year 2013 requests
Centers for Disease Control and Prevention (CDC)
Increase overall CDC funding--$7.8 billion
Funding Healthy Communities--$52.8 million
Office on Smoking and Health--$197.1 million
Asthma programs--$25.3 million
Environment and Health Tracking Network--$35 million
Tuberculosis programs--$243 million
CDC influenza preparedness--$159.6 million
NIOSH--$522.3 million
Prevention and Public Health Fund--Please Protect the Fund
National Institutes of Health (NIH)
Increase overall NIH funding--$32 billion
National Heart, Lung, and Blood Institute--$3.214 billion
National Cancer Institute--$5.296 billion
National Institute of Allergy and Infectious Diseases--$4.689
billion
National Institute of Environmental Health Sciences--$717.9 million
National Institute of Nursing Research--$151.178 million
National Institute on Minority Health and Health Disparities--
$288.678 million
Fogarty International Center--$72.7 million
______

Prepared Statement of the Association of Maternal and Child Health
Programs
The Association of Maternal and Child Health Programs (AMCHP), is
pleased to submit testimony describing our request for $645 million in
funding for fiscal year 2013 for the Title V Maternal and Child Health
(MCH) Services Block Grant. This funding request is level with fiscal
year 2012 and represents an $85 million decrease from its highest level
of $730 million in fiscal year 2003. While this request does not
address all of the needs of pregnant women, children and children with
special healthcare needs, we recognize that in the current budget
climate a request for increased funding would come at the detriment of
other public health programs designed to promote optimal health for the
very populations our programs serve.
Additionally, we are gravely concerned about the proposed cuts to
the Centers for Disease Control and Prevention (CDC). We urge you to
recognize the value of health in improving the lives of American
families. Further cuts to any programs that promote and protect the
health of all Americans may seem penny wise but are definitely pound
foolish.
In 2010 the Title V MCH Services Block Grant provided support and
services to 41 million American women, infants and children, including
children with special healthcare needs. It has been proven a cost
effective, accountable, and flexible funding source used to address the
most critical, pressing and unique MCH needs of each State. States and
jurisdictions use the Title V MCH Services Block Grant to design and
implement a wide range of maternal and child health programs that meet
national and State needs. Although specific initiatives may vary among
the States and jurisdictions, all of them work with local, State, and
national partners to accomplish the following:
--Reduce infant mortality and incidence of disabling conditions among
children.
--Increase the number of children appropriately immunized against
disease.
--Increase the number of children in low-income households who
receive assessments and follow-up diagnostic and treatment
services.
--Provide and ensure access to comprehensive perinatal care for
women; preventative and child care services; comprehensive
care, including long-term care services, for children with
special healthcare needs; and rehabilitation services for blind
and disabled children.
--Facilitate the development of comprehensive, family centered,
community-based, culturally competent, coordinated systems of
care for children with special healthcare needs.
In addition to providing services to over 40 million Americans,
Title V MCH Services Block Grant programs save Federal and State
governments' money by ensuring that people receive preventive services
to avoid more costly chronic conditions later in life. Below are some
examples of the cost effectiveness of maternal and child health
interventions and the role of the Title V MCH Block Grant.
--Comprehensive prenatal care is associated with reduced incidence of
low birth weight and infant mortality. State MCH programs link
uninsured women to available prenatal services, and coordinate
closely with State Medicaid programs to improve outreach and
enrollment services to eligible women. Preconception health is
a focus of many State MCH programs that work to improve women's
health prior to pregnancy in order to improve pregnancy related
outcomes.
--Total medical costs are lower for exclusively breastfed infants
than never-breastfed infants since breastfed infants typically
need fewer sick care visits, prescriptions and
hospitalizations. State MCH programs promote breastfeeding by
developing educational materials for new mothers on
breastfeeding practices and providing information on
breastfeeding to all residents of their States through
websites, toll free telephone lines and coordinating with other
local and State programs.
--Studies demonstrate that every $1 spent on smoking cessation
counseling for pregnant women saves $3 in neonatal intensive
care costs. State MCH programs fund state-wide smoking
cessation or ``quit lines'' for pregnant women and provide
education within their State about the dangers of smoking
during pregnancy, helping moms and moms-to-be quit smoking and
reducing their risk of premature birth.
--Every $1 spent on preconception care programs for women with
diabetes can reduce health costs by up to $5.19 by preventing
costly complications in both mothers and babies. Investing $10
per person per year in community based disease prevention could
save more than $16 billion annually within 5 years. State MCH
and Chronic Disease programs work together at the State and
community levels to educate women, children and families about
the importance of physical activity, nutrition and obesity
prevention throughout the lifespan.
--Early detection of genetic and metabolic conditions can lead to
reductions in death and disability as well as saved costs. For
example, phenylketonuria (PKU) a rare metabolic disorder
affects approximately 1 of every 15,000 infants born in the
United States. Studies have found that PKU screening and
treatment represent a net direct costs savings. State MCH
programs are responsible for assuring that newborn screening
systems are in place statewide and that clinicians are alerted
when follow up is required.
--Early detection of physical and intellectual disabilities results
in more efficient and effective treatment and support for
children with special healthcare needs. High-quality programs
for children at risk produce strong economic returns ranging
from about $4 per dollar invested to over $10 per dollar
invested. State MCH programs administer the State and
territorial Early Childhood Comprehensive Systems Initiative to
support State and community efforts to strengthen, improve and
integrate early childhood service systems.
--The injuries incurred by children and adolescents in 1 year create
total lifetime economic costs estimated at more than $50
billion in medical expenses and lost productivity. State MCH
programs examine data and translate it into information and
policy to positively impact the incidence of infant mortality
and other factors that may contribute to child deaths. State
MCH programs invest in injury prevention programs, including
State and local initiatives to promote the proper use of child
safety seats and helmets. Additionally State MCH programs
promote safe sleeping practices to prevent Sudden Infant Death
Syndrome (SIDS).
--The total cost of adolescent health risk behaviors is estimated to
be $435.4 billion per year. Risky behaviors have impact on the
health and well-being of adolescents included smoking, binge
drinking, substance abuse, suicide attempts and high risk
sexual behavior. State MCH programs and their partners address
access to healthcare, violence, mental health and substance
use, reproductive health and prevention of chronic disease
during adulthood. State MCH programs often support State
adolescent health coordinators who work to improve the health
of adolescents within their States and territories.
Members of Congress contend that savings in such as these will not
be realized in the near future and therefore won't result in immediate
savings in these tight fiscal times. But today we can highlight a real-
time example of how the Title V MCH Services Block Grant has played a
role in helping save millions in annual healthcare costs. In Ohio,
Title V played a lead role in providing funding for the Ohio Perinatal
Quality Collaborative (OPQC). The OPQC is charged with reducing preterm
births and improving outcomes of preterm newborns. Using the Institute
for Healthcare Improvement Breakthrough Series, OPQC worked with 20
maternity hospitals (47 percent of all births in the State) through a
collaborative focused on several obstetric improvement projects. OPQC
reports that as a result of their efforts over 9,000 births are full
term and that approximately 250 NICU admissions have been avoided. OPQC
estimates approximately $10 million in annual healthcare cost savings.
Other States have similar initiatives and we are tracking their
successes.
The Title V MCH Services block grant is the foundation upon which
State and territorial maternal and child health programs are built.
Without a Federal investment the aforementioned savings will not be
realized and our Nation's ability to address the most pressing needs of
these vulnerable populations will not be possible. The Title V MCH
Service Block Grant supports a system which treats a whole person, not
by their specific disease and AMCHP therefore strongly urge you to
sustain this investment at $645 million in fiscal year 2013.
In addition to the Title V MCH block grant AMCHP is extremely
concerned about current proposals to cut funding from other core
programs designed to assure the health of our Nation's families. We
strongly urge you to sustain funding for the Centers for Control and
Prevention (CDC). It is short sighted and counterproductive to further
cut discretionary funding for prevention in the interest of deficit
reduction. CDC programs should be protected from further cuts that will
have profound consequences on our capacity to address the needs of the
most vulnerable.
______

Prepared Statement of the Association of Minority Health Professions
Schools
Mr. Chairman and members of the subcommittee, thank you for the
opportunity to present my views before you today. I am Dr. Wayne J.
Riley, Chairman of the Board of Directors of the Association of
Minority Health Professions Schools (AMHPS) and the President and Chief
Executive Officer of Meharry Medical College. AMHPS, established in
1976, is a consortium of our Nation's 12 historically black medical,
dental, pharmacy, and veterinary medicine schools. The members are two
dental schools at Howard University and Meharry Medical College; four
colleges of medicine at The Charles Drew University, Howard University,
Meharry Medical College, and Morehouse School of Medicine; five schools
of pharmacy at Florida A&M University, Hampton University, Howard
University, Texas Southern University, and Xavier University; and one
college of veterinary medicine at Tuskegee University. In all of these
roles, I have seen firsthand the importance of minority health
professions institutions and the Title VII Health Professions Training
programs.
Mr. Chairman, I speak for our institutions, when I say that the
minority health professions institutions and the Title VII Health
Professionals Training programs address a critical national need.
Persistent and severe staffing shortages exist in a number of the
health professions, and chronic shortages exist for all of the health
professions in our Nation's most medically underserved communities.
Furthermore, even after the landmark passage of health reform, it is
important to note that our Nation's health professions workforce does
not accurately reflect the racial composition of our population. For
example while blacks represent approximately 15 percent of the U.S.
population, only 2-3 percent of the Nation's health professions
workforce is black. Mr. Chairman, I would like to share with you how
your committee can help AMHPS continue our efforts to help provide
quality health professionals and close our Nation's health disparity
gap.
There is a well established link between health disparities and a
lack of access to competent healthcare in medically underserved areas.
As a result, it is imperative that the Federal Government continue its
commitment to minority health profession institutions and minority
health professional training programs to continue to produce healthcare
professionals committed to addressing this unmet need--even in austere
financial times.
An October 2006 study by the Health Resources and Services
Administration (HRSA)--during the Bush administration--entitled ``The
Rationale for Diversity in the Health Professions: A Review of the
Evidence'' found that minority health professionals serve minority and
other medically underserved populations at higher rates than non-
minority professionals. The report also showed that; minority
populations tend to receive better care from practitioners who
represent their own race or ethnicity, and non-English speaking
patients experience better care, greater comprehension, and greater
likelihood of keeping follow-up appointments when they see a
practitioner who speaks their language. Studies have also demonstrated
that when minorities are trained in minority health profession
institutions, they are significantly more likely to: (1) serve in rural
and urban medically underserved areas, (2) provide care for minorities
and (3) treat low-income patients.
As you are aware, Title VII Health Professions Training programs
are focused on improving the quality, geographic distribution and
diversity of the healthcare workforce in order to continue eliminating
disparities in our Nation's healthcare system. These programs provide
training for students to practice in underserved areas, cultivate
interactions with faculty role models who serve in underserved areas,
and provide placement and recruitment services to encourage students to
work in these areas. Health professionals who spend part of their
training providing care for the underserved are up to 10 times more
likely to practice in underserved areas after graduation or program
completion.
In fiscal year 2013, funding for the Title VII Health Professions
Training programs must be robust, especially the funding for the
Minority Centers of Excellence (COEs) and Health Careers Opportunity
Program (HCOPs). In addition, the funding for the National Institutes
of Health (NIH)'s National Institute on Minority Health and Health
Disparities (NIMHD), as well as the Department of Health and Human
Services (HHS)'s Office of Minority Health (OMH), should be preserved.
Minority Centers of Excellence.--COEs focus on improving student
recruitment and performance, improving curricula in cultural
competence, facilitating research on minority health issues and
training students to provide health services to minority individuals.
COEs were first established in recognition of the contribution made by
four historically black health professions institutions to the training
of minorities in the health professions. Congress later went on to
authorize the establishment of ``Hispanic'', ``Native American'' and
``Other'' Historically black COEs. For fiscal year 2013, I recommend a
funding level of $24.602 million for COEs.
Health Careers Opportunity Program (HCOP).--HCOPs provide grants
for minority and non-minority health profession institutions to support
pipeline, preparatory and recruiting activities that encourage minority
and economically disadvantaged students to pursue careers in the health
professions. Many HCOPs partner with colleges, high schools, and even
elementary schools in order to identify and nurture promising students
who demonstrate that they have the talent and potential to become a
health professional. For fiscal year 2013, I recommend a funding level
of $22.133 million for HCOPs.
National Institutes of Health
Research Centers at Minority Institutions.--The Research Centers at
Minority Institutions program (RCMI), newly moved to the National
Institute on Minority Health and Health Disparities 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, the funding for this important
program grow at the same rate as NIH overall in fiscal year 2013.
National Institute on Minority Health and Health Disparities.--The
National Institute on Minority Health and Health Disparities (NIMHD) is
charged with addressing the longstanding health status gap between
minority and nonminority populations. The NIMHD helps health
professions institutions to narrow the health status gap by improving
research capabilities through the continued development of faculty,
labs, and other learning resources. The NIMHD also supports biomedical
research focused on eliminating health disparities and develops a
comprehensive plan for research on minority health at the NIH.
Furthermore, the NIMHD provides financial support to health professions
institutions that have a history and mission of serving minority and
medically underserved communities through its Centers of Excellence
program. For fiscal year 2013, I recommend funded increases
proportional with the funding of the overall NIH, with increased FTEs.
Department of Health and Human Services
Office of Minority Health.--Specific programs at OMH include:
assisting medically underserved communities with the greatest need in
solving health disparities and attracting and retaining health
professionals; assisting minority institutions in acquiring real
property to expand their campuses and increase their capacity to train
minorities for medical careers; supporting conferences for high school
and undergraduate students to interest them in health careers, and
supporting cooperative agreements with minority institutions for the
purpose of strengthening their capacity to train more minorities in the
health professions.
The OMH has the potential to play a critical role in addressing
health disparities. For fiscal year 2013, I recommend a funding level
of $65 million for the OMH.
Department of Education
Strengthening Historically Black Graduate Institutions.--The
Department of Education's Strengthening Historically Black Graduate
Institutions (HBGI) program (Title III, Part B, Section 326) is
extremely important to AMHPS. 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. In fiscal year 2013, an
appropriation of $65 million is suggested to continue the vital support
that this program provides to historically black graduate institutions.
Mr. Chairman, please allow me to express my appreciation to you and
the members of this subcommittee. With your continued help and support,
AMHPS' member institutions and the Title VII Health Professions
Training programs and the historically black health professions schools
can help this country to overcome health disparities. Congress must be
careful not to eliminate, paralyze or stifle the institutions and
programs that have been proven to work. The Association seeks to close
the ever widening health disparity gap. If this subcommittee will give
us the tools, we will continue to work towards the goal of eliminating
that disparity everyday.
Thank you, Mr. Chairman, and I welcome every opportunity to answer
questions for your records.
______

Prepared Statement of the American Nurses Association
The American Nurses Association (ANA) appreciates the opportunity
to comment on fiscal year 2013 appropriations for the Title VIII
Nursing Workforce Development Programs and Nurse-Managed Health
Clinics. Founded in 1896, ANA is the only full-service professional
association representing the interests of the Nation's 3.2 million
registered nurses (RNs) through its State nurses associations, and
organizational affiliates. The ANA advances the nursing profession by
fostering high standards of nursing practice, promoting the rights of
nurses in the workplace, and projecting a positive and realistic view
of nursing.
As the largest single group of clinical healthcare professionals
within the health system, licensed registered nurses are educated and
practice within a holistic framework that views the individual, family
and community as an interconnected system that can keep us well and
help us heal. As the Nation works toward restructuring the healthcare
system by focusing on expanding access, decreasing cost, and improving
quality; a significant investment must be made in strengthening the
nursing workforce.
ANA is grateful to the Subcommittee for your past commitment to
Title VIII funding, and we understand the immense fiscal pressures the
Subcommittee is facing. However, we respectfully request you support
$251 million for the Nursing Workforce Development programs authorized
under Title VIII of the Public Health Service Act in fiscal year 2013.
Additionally, we respectfully request $20 million for the Nurse-Managed
Health Clinics authorized under Title III of the Public Health Service
Act in fiscal year 2013.
demand for nurses continues to grow
A sufficient supply of nurses is critical in providing our Nation's
population with quality healthcare now and into the future. Registered
Nurses (RNs) and Advanced Practice Registered Nurses (APRNs) are the
backbone of hospitals, community clinics, school health programs, home
health and long-term care programs, and serve patients in many other
roles and settings. The Bureau of Labor Statistics' (BLS) Employment
Projections for 2010-2020 state the expected number of practicing
nurses will grow from 2.74 million in 2010 to 3.45 million in 2020, an
increase of 712,000 or 26 percent.
Contrary to the good news that there are a growing number of
nurses, the current nurse workforce is aging. According to the 2008
National Sample Survey of Registered Nurses, over 1 million of the
Nation's 2.6 million practicing RNs are over the age of 50. Within this
population, more than 275,000 nurses are over the age of 60. As the
economy continues to rebound, many of these nurses will seek
retirement, leaving behind a significant deficit in the number of
experienced nurses in the workforce. According to Douglas Staiger,
author of a New England Journal of Medicine study, the nursing shortage
will ``re-emerge'' from 2010 and 2015 as 118,000 nurses will stop
working full time as the economy grows.
Furthermore, as of January 1, 2011 baby boomers began turning 65 at
the rate of 10,000 a day. With this aging population, the healthcare
workforce will need to grow as there is an increase in demand for
nursing care in traditional acute care settings as well as the
expansion of non-hospital settings such as home care and long-term
care.
The BLS projections explain a need for 495,500 replacements in the
nursing workforce, bringing the total number of job openings for nurses
due to growth and replacements to 1.2 million by 2020. A shortage of
this magnitude would be twice as large as any shortage experienced by
this country since the 1960s. Cuts to Title VIII funding would be
detrimental to the healthcare system and the patients we serve.
title viii: nursing workforce development programs
The Nursing Workforce Development programs, authorized under Title
VIII of the Public Health Service Act (42 U.S.C. 296 et seq.), include
programs such as Nursing Loan Repayment Program and Scholarships
Program, (Sec. 846, Title VIII, PHSA); Advanced Nursing Education (ANE)
Grants; (Sec. 811), Advanced Education Nursing Traineeships, (AENT);
Nurse Anesthetist Traineeships (NAT): Comprehensive Geriatric Education
Grants, (Sec. 855, Title VIII, PHSA); Nurse Faculty Loan Program, (Sec.
846A, Title VIII, PHSA); and Nursing Workforce Diversity Grants, (Sec.
821). These programs support the supply and distribution of qualified
nurses to meet our nation's healthcare needs.
Without support for Title VIII funding and nursing education; there
will be a shortage of nurse educators. With a shortage of nurse
educators, schools will have to turn away nursing students. With less
financial assistance to deserving nursing students; there will be fewer
nursing students. With fewer nursing students, there will be fewer
nurses. As noted above, the nursing shortage will have a detrimental
impact on the entire healthcare system.
Numerous studies have shown that nursing shortages contribute to
medical errors, poor patient outcomes, and increased mortality rates. A
study published in the March 17, 2011 issue of the New England Journal
of Medicine shows that inadequate staffing is tied to higher patient
mortality rates. The study supports findings of previous studies and
finds that higher than typical rates of patient admissions, discharges,
and transfers during a shift were associated with increased mortality--
an indication of the important time and attention needed by RNs to
ensure effective coordination of care for patients at critical
transition periods.
Over the last 48 years, Title VIII programs have provided the
largest source of Federal funding for nursing education; offering
financial support for nursing education programs, individual students,
and nurse educators. These programs bolster nursing education at all
levels, from entry-level preparation through graduate study and in many
areas including rural and medically underserved communities.
The American Association of Colleges of Nursing's (AACN) Title VIII
Student Recipient Survey gathers information about Title VIII dollars
and its impact on nursing students. The 2011-2012 survey, which
included responses from over 1,600 students, stated that Title VIII
programs played a critical role in funding their nursing education. The
survey showed that 68 percent of the students receiving Title VIII
funding are attending school full-time. Between fiscal year 2005 and
2010 alone, the Title VIII programs supported over 400,000 nurses and
nursing students as well as numerous academic nursing institutions, and
healthcare facilities.
However, current funding levels are falling short of the growing
need. In fiscal year 2008 (most recent year statistics are available),
the Health Resources and Services Administration (HRSA) was forced to
turn away 92.8 percent of the eligible applicants for the Nurse
Education Loan Repayment Program (NELRP), and 53 percent of the
eligible applicants for the Nursing Scholarship program due to a lack
of adequate funding. These programs are used to direct RNs into areas
with the greatest need--including community health centers, departments
of public health, and disproportionate share hospitals. Additionally
according to the AACN Title VIII Student Recipient Survey, a record
58,327 qualified applicants were turned away due to insufficient
clinical teaching sites, a lack of faculty, limited classroom space,
insufficient preceptors and budget cuts.
Monies you appropriate for these programs help move nurses into the
workforce without delay. Your investment in programs, and the nurses
that participate, is returned by more students entering into the
profession and serving in rural and underserved areas; by nurses
continuing with their education and studying to be nurse practitioners,
thereby addressing our Nation's growing need for primary care
providers; or by going on to become a nurse faculty member and teaching
the next generation of nurses. While the ANA appreciates the continued
support of this Subcommittee, we are concerned that Title VIII funding
levels have not been sufficient to address the growing nursing
shortage. Registered Nurses (RNs) and Advanced Practice Nurses (APRNs)
are key providers whose care is linked directly to the availability,
cost, and quality of healthcare services. For these reasons and many
more, we again respectfully request you appropriate $251 million for
the Nursing Workforce Development programs authorized under Title VIII
of the Public Health Service Act in fiscal year 2013.
nurse-managed health clinics
A healthcare system must value primary care and prevention to
achieve an improved health status of individuals, families and the
community. Nurses are strong supporters of community and home-based
models of care. We believe that the foundation for a wellness-based
healthcare system is built in these settings and reduces the amount of
both financial expenditures and human suffering. ANA supports the
renewed focus on new and existing community-based programs such as
Nurse Managed Health Centers (NMHCs).
Currently, there are more than 200 Nurse Managed Health Centers
(NMHCs) in the United States which have provided care to over 2 million
patients annually. ANA believes that Nurse Managed Health Centers
(NMHCs) are an efficient, cost-effective way to deliver primary
healthcare services. NMHCs are effective in disease prevention and
early detection, management of chronic conditions, treatment of acute
illnesses, health promotion, and more. These clinics are also used as
clinical sites for nursing education.
The ANA again respectfully requests the committee provide $20
million for the Nurse-Managed Health Clinics authorized under Title
VIII of the Public Health Service Act in fiscal year 2013.
Thank you for your time and your attention to this matter.
______

Prepared Statement of the American National Red Cross and United
Nations Foundation
Chairman Tom Harkin, Ranking Member Richard Shelby, and Members of
the Subcommittee, the American Red Cross and the United Nations
Foundation appreciate the opportunity to submit testimony in support of
measles control activities of the U.S. Centers for Disease Control and
Prevention (CDC). The American Red Cross and the United Nations
Foundation recognize the leadership that Congress has shown in funding
CDC for these essential activities. We sincerely hope that Congress
will continue to support the CDC during this critical period in measles
control.
In 2001, CDC--along with the American Red Cross, the United Nations
Foundation, the World Health Organization, and UNICEF--founded the
Measles Initiative, a partnership committed to reducing measles deaths
globally. The current U.N. goal is to reduce measles deaths by 95
percent by 2015 compared to 2000 estimates. The Measles Initiative is
committed to reaching this goal by providing technical and financial
support to governments and communities worldwide.
The Measles Initiative has achieved ``spectacular'' results by
supporting the vaccination of more than 1 billion children. Largely due
to the Measles Initiative, global measles mortality dropped 74 percent,
from an estimated 535,300 deaths in 2000 to 139,300 in 2010 (the latest
year for which data is available). During this same period, measles
deaths in Africa fell by 85 percent.

FIGURE 1.--ESTIMATED NUMBER OF GLOBAL MEASLES DEATHS, 2000-2010
------------------------------------------------------------------------
Number
------------------------------------------------------------------------
2000....................................................... 535.3
2001....................................................... 528.8
2002....................................................... 373.8
2003....................................................... 484.3
2004....................................................... 331.4
2005....................................................... 384.8
2006....................................................... 227.7
2007....................................................... 130.1
2008....................................................... 137.5
2009....................................................... 177.9
2010....................................................... 139.3
------------------------------------------------------------------------

Working closely with host governments, the Measles Initiative has
been the main international supporter of mass measles immunization
campaigns since 2001. The Initiative mobilized more than $870 million
and provided technical support in more than 60 developing countries on
vaccination campaigns, surveillance and improving routine immunization
services. From 2000 to 2010, an estimated 9.6 million measles deaths
were averted as a result of these accelerated measles control
activities at a donor cost of less than $200/death averted, making
measles mortality reduction one of the most cost-effective public
health interventions.
Nearly all the measles vaccination campaigns have been able to
reach more than 90 percent of their target populations. Countries
recognize the opportunity that measles vaccination campaigns provide in
accessing mothers and young children, and ``integrating'' the campaigns
with other life-saving health interventions has become the norm. In
addition to measles vaccine, Vitamin A (crucial for preventing
blindness in under nourished children), de-worming medicine (reduces
malnutrition), and insecticide-treated bed nets (ITNs) for malaria
prevention are distributed during vaccination campaigns. The scale of
these distributions is immense. For example, more than 42 million ITNs
were distributed in vaccination campaigns in the last few years. The
delivery of multiple child health interventions during a single
campaign is far less expensive than delivering the interventions
separately, and this strategy increases the potential positive impact
on children's health from a single campaign.
The extraordinary reduction in global measles deaths contributed
nearly 25 percent of the progress to date toward Millennium Development
Goal #4 (reducing under five child mortality). However, since 2009,
Africa has experienced outbreaks affecting 28 countries, resulting in a
four-fold increase in reported measles cases and in 2011, Europe
experienced over 30,000 cases with half of these cases in one country--
France. These outbreaks highlight the fragility of the last decade's
progress. If mass immunization campaigns are not continued, measles
deaths will increase rapidly with more than half a million deaths
estimated for 2013 alone.
To achieve the 2015 goal and avoid a resurgence of measles the
following actions are required:
--Fully implementing activities, both campaigns and strengthening
routine measles coverage, in India since it is the greatest
contributor to the global burden of measles.
--Sustaining the gains in reduced measles deaths, especially in
Africa, by strengthening immunization programs to ensure that
more than 90 percent of infants are vaccinated against measles
through routine health services before their first birthday as
well as conducting timely, high quality mass immunization
campaigns.
--Acceleration of MCV2 introduction in eligible countries with
support from the GAVI Alliance.
--Securing sufficient funding for measles-control activities both
globally and nationally. The Measles Initiative faces a funding
shortfall of an estimated United States $112 million for 2012-
2015. Implementation of timely measles campaigns is
increasingly dependent upon countries funding these activities
locally. The decrease in donor funds available at global level
to support measles elimination activities makes increased
political commitment and country ownership of the activities
critical for achieving and sustaining the global goal of
reducing measles mortality by 95 percent and supporting
regional measles elimination goals.
If these challenges are not addressed, the remarkable gains made
since 2000 will be lost and a major resurgence in measles deaths will
occur.
By controlling measles cases in other countries, U.S. children are
also being protected from the disease. Measles can cause severe
complications and death. A resurgence of measles occurred in the United
States between 1989 and 1991, with more than 55,000 cases reported.
This resurgence was particularly severe, accounting for more than
11,000 hospitalizations and 123 deaths. Since then, measles control
measures in the United States have been strengthened and endemic
transmission of measles cases have been eliminated here since 2000.
However, importations of measles cases into this country continue to
occur each year. The costs of these cases and outbreaks are
substantial, both in terms of the costs to public health departments
and in terms of productivity losses among people with measles and
parents of sick children. Studies show that a single case of measles in
the United States can cost between $100,000 and $200,000 to control.
The United States had 222 measles cases in 2011, the highest in 15
years and Canada experienced a large outbreak of over 800 cases.
The Role of CDC in Global Measles Mortality Reduction
Since fiscal year 2001, Congress has provided between $43.6 and
$49.3 million annually in funding to CDC for global measles control
activities. These funds were used toward the purchase of measles
vaccine for use in large-scale measles vaccination campaigns in more
than 80 countries in Africa and Asia, and for the provision of
technical support to Ministries of Health. Specifically, this technical
support includes:
--Planning, monitoring, and evaluating large-scale measles
vaccination campaigns;
--Conducting epidemiological investigations and laboratory
surveillance of measles outbreaks; and
--Conducting operations research to guide cost-effective and high
quality measles control programs.
In addition, CDC epidemiologists and public health specialists have
worked closely with WHO, UNICEF, the United Nations Foundation, and the
American Red Cross to strengthen measles control programs at global and
regional levels. While it is not possible to precisely quantify the
impact of CDC's financial and technical support to the Measles
Initiative, there is no doubt that CDC's support--made possible by the
funding appropriated by Congress--was essential in helping achieve the
sharp reduction in measles deaths in just 10 years.
The American Red Cross and the United Nations Foundation would like
to acknowledge the leadership and work provided by CDC and recognize
that CDC brings much more to the table than just financial resources.
The Measles Initiative is fortunate in having a partner that provides
critical personnel and technical support for vaccination campaigns and
in response to disease outbreaks. CDC personnel have routinely
demonstrated their ability to work well with other organizations and
provide solutions to complex problems that help critical work get done
faster and more efficiently.
In fiscal year 2011 and fiscal year 2012, Congress appropriated
approximately $49 million each year to fund CDC for global measles
control activities. This amount represents a $2.7 million decrease from
2010. The American Red Cross and the United Nations Foundation
respectfully request a return to fiscal year 2010 funding levels ($52
million) for fiscal year 2013 for CDC's measles control activities to
protect the investment of the last decade, and prevent a global
resurgence of measles and a loss of progress toward Millennium
Development Goal #4.
Your commitment has brought us unprecedented victories in reducing
measles mortality around the world. In addition, your continued support
for this initiative helps prevent children from suffering from this
preventable disease both abroad and in the United States.
Thank you for the opportunity to submit testimony.
______

Prepared Statement of Americans for Nursing Shortage Relief
The undersigned organizations of the ANSR Alliance greatly
appreciate the opportunity to submit written testimony regarding fiscal
year 2013 appropriations for the Title VIII Nursing Workforce
Development Programs at the Health Resources and Services
Administration (HRSA) and the Nurse Managed Health Clinics as
authorized under Title III of the Public Health Service Act. We
represent a diverse cross-section of healthcare and other related
organizations, healthcare providers, and supporters of nursing issues
that have united to address the national nursing shortage. ANSR stands
ready to work with Congress to advance programs and policy that will
ensure our Nation has a sufficient and adequately prepared nursing
workforce to provide quality care to all well into the 21st century.
The Alliance, therefore, urges Congress to:
--Appropriate $251 million in funding for Nursing Workforce
Development Programs under Title VIII of the Public Health
Service Act at the Health Resources and Services Administration
(HRSA) in fiscal year 2013.
--Appropriate $20 million in fiscal year 2013 for the Nurse Managed
Health Clinics as authorized under Title III of the Public
Health Service Act.
The Nursing Shortage
Nursing is the largest healthcare profession in the United States.
According to the National Council of State Boards of Nursing, there
were nearly 3.854 million licensed RNs in 2010. Nurses and advanced
practice nurses (nurse practitioners, nurse midwives, clinical nurse
specialists, and certified registered nurse anesthetists) work in a
variety of settings, including primary care, public health, long-term
care, surgical care facilities, schools, and hospitals. The March 2008
study, The Future of the Nursing Workforce in the United States: Data,
Trends, and Implications, calculates an adjusted projected demand of
500,000 full-time equivalent registered nurses by 2025. According to
the U.S. Bureau of Labor Statistics, employment of registered nurses is
expected to grow by 26 percent from 2010 to 2020 resulting in 711,900
new jobs. Based on these scenarios, the shortage presents an extremely
serious challenge in the delivery of high quality, cost-effective
services.
Build Capacity of Nursing Education Programs and Enhance Nursing
Research
New models of overall healthcare delivery are being developed to
address a range of challenges in healthcare and impact the structure of
the workforce and care delivery. Government estimates indicate the
nursing shortage only promises to worsen due to an insufficient supply
of individuals matriculating in nursing schools, an aging existing
workforce, and the inadequate availability of nursing faculty to
educate and train the next generation of nurses. At the exact same time
that the nursing shortage is expected to worsen, the baby boom
generation is aging and the number of individuals with serious, life-
threatening, and chronic conditions requiring nursing care will
increase. Consequently, more must be done today by the Government to
help ensure an adequate nursing workforce for the patients of today and
tomorrow.
A particular focus on securing and retaining adequate numbers of
faculty is essential to ensure that all individuals interested in--and
qualified for--nursing school can matriculate in the year that they are
accepted. The National League for Nursing found that in the 2009-2010
academic year,
--42 percent of qualified applications to prelicensure RN programs
were turned away.
--One in four (25.1 percent) of prelicensure RN programs turned away
qualified applicants.
--Four out of five (60 percent) of prelicensure RN programs were
considered ``highly selective'' by national college admissions
standards, accepting less than 50 percent of applications for
admission.
Aside from having a limited number of faculty, nursing programs
struggle to provide space for clinical laboratories and to secure a
sufficient number of clinical training sites at healthcare facilities.
ANSR supports the need for sustained attention on the efficacy and
performance of existing and proposed programs to improve nursing
practices and strengthen the nursing workforce. The support of research
and evaluation studies that test models of nursing practice and
workforce development is integral to advancing healthcare for all in
America. Investments in research and evaluation studies have a direct
effect on the caliber of nursing care. Our collective goal of improving
the quality of patient care, reducing costs, and efficiently delivering
appropriate healthcare to those in need is served best by aggressive
nursing research and performance and impact evaluation at the program
level.
Strengthen the Capacity of the National Nursing Public Health
Infrastructure
Nurses make a difference in the lives of patients from disease
prevention and management to education to responding to emergencies.
Nearly half of Americans suffer from one or more chronic conditions and
chronic disease accounts for 70 percent of all deaths. An October 2008
report issued by Trust for America's Health entitled ``Blueprint for a
Healthier America'' found that the health and safety of Americans
depends on the next generation of professionals in public health.
Further, existing efforts to recruit and retain the public health
workforce are insufficient. New policies and incentives must be created
to make public service careers in public health an attractive
professional path, especially for the emerging workforce and those
changing careers.
Public health nursing is the critical resources for healthy
communities. Nurses are key healthcare workers that can help our Nation
achieve its public health goals and protect our Nation from the full
impact of disasters, both natural and man-made. Data from the 2000
National Sample Survey of Registered Nurses (conducted by the Health
Resources Services Administration, Division of Nursing) indicate that
the number of registered nurses (RNs) employed in public/community
health settings with the title ``public health nurse'' has decreased
from 39 percent in 1980 to just 17.6 percent in 2000. Even in the
overall public/community nursing group, there was a decrease of almost
16 percent between 1996 and 2000.
The shortage of school nurse positions contributes to holes in the
healthcare safety net for all children. The Institute of Medicine
report, ``The Future of Nursing: Leading Change, Advancing Health'',
points out that with an expected increase in the number of children who
have complex medical, genetic and mental/behavioral health conditions
that require more nursing oversight, school nursing provides the
expertise and coordination to assure that children receive the care
they need.
Summary
RNs, advanced practice registered nurses, and nursing faculty are
all critically necessary to sustain an adequate supply of nurses
available to deliver quality healthcare. The U.S. nursing shortage is
part of a larger worldwide nursing shortage. The international scope of
this problem makes it an immediate and critical need for our Nation to
develop additional strategies to appeal to men and women to pursue
nursing and teaching nursing as a profession. Congress specifies the
mission of Title VIII is to ensure a sufficient national supply of
nurses; Title VIII programs must be adequately funded to fulfill that
important mission. ANSR requests $251 million in funding for Nursing
Workforce Development Programs under Title VIII of the Public Health
Service Act at HRSA and $20 million for the Nurse Managed Health
Clinics under Title III of the Public Health Service Act in fiscal year
2013.
list of ansr member organizations
Academy of Medical-Surgical Nurses
American Academy of Ambulatory Care Nursing
American Academy of Nurse Practitioners
American Academy of Nursing
American Association of Nurse Anesthetists
American Association of Nurse Assessment Coordination
American Association of Occupational Health Nurses
American College of Nurse-Midwives
American Organization of Nurse Executives
American Psychiatric Nurses Association
American Society for Pain Management Nursing
American Society of PeriAnesthesia Nurses
American Society of Plastic Surgical Nurses
Association for Radiologic & Imaging Nursing
Association of Pediatric Hematology/Oncology Nurses
Association of State and Territorial Directors of Nursing
Association of Women's Health, Obstetric & Neonatal Nurses
Citizen Advocacy Center
Dermatology Nurses' Association
Developmental Disabilities Nurses Association
Emergency Nurses Association
Infusion Nurses Society
International Association of Forensic Nurses
International Nurses Society on Addictions
International Society of Nurses in Genetics, Inc.
Legislative Coalition of Virginia Nurses
National Association of Clinical Nurse Specialists
National Association of Hispanic Nurses
National Association of Neonatal Nurses
National Association of Neonatal Nurse Practitioners
National Association of Nurse Massage Therapists
National Association of Nurse Practitioners in Women's Health
National Association of Orthopedic Nurses
National Association of Registered Nurse First Assistants
National Association of School Nurses
National Black Nurses Association
National Council of State Boards of Nursing
National Council of Women's Organizations
National Gerontological Nursing Association
National League for Nursing
National Nursing Centers Consortium
National Nursing Staff Development Organization
National Organization for Associate Degree Nursing
National Student Nurses' Association, Inc.
Nurses Organization of Veterans Affairs
Pediatric Endocrinology Nursing Society
Preventive Cardiovascular Nurses Association
RN First Assistants Policy & Advocacy Coalition
Society of Gastroenterology Nurses and Associates, Inc.
Society of Pediatric Nurses
Society of Trauma Nurses
Women's Research & Education Institute
Wound, Ostomy and Continence Nurses Society
______

Prepared Statement of the American Psychological Association
The American Psychological Association (APA) appreciates that the
Committee is accepting outside witness testimony addressing the fiscal
year 2013 Labor-HHS-Education appropriations bill. APA is a scientific
and professional organization representing psychology in the United
States, with 154,000 members and affiliates. APA's mission is to
advance the creation, communication, and application of psychological
knowledge to benefit society and improve people's lives. Although APA
and its members have broad interests in many of the programs under the
Subcommittee's jurisdiction, in this statement we highlight critical
activities and funding needs in five agencies: the National Institutes
of Health, Administration on Aging, Centers for Disease Control and
Prevention, the Health Resources and Services Administration, and the
Substance Abuse and Mental Health Services Administration.
Substance Abuse and Mental Health Services Administration
(SAMHSA).--SAMHSA's three component agencies have the primary Federal
responsibility to mobilize and improve mental health and addiction
services in the United States. The Center for Mental Health Services
promotes improvements in mental health services that enhance the lives
of adults who experience mental illnesses and children with serious
emotional disorders; fills unmet and emerging needs; bridges the gap
between research and practice; and strengthens data collection to
improve quality and enhance accountability.
APA strongly recommends that Congress allocate the fully authorized
amount ($50 million) for SAMHSA's National Child Traumatic Stress
Network (NCTSN) program which works to aid the recovery of children,
families, and communities impacted by a wide range of trauma, including
physical and sexual abuse, natural disasters, sudden death of a loved
one, the impact of war on military families, and much more.
Specifically, APA recommends that SAMHSA increase the number of NCTSN
grantees and maintain the collaborative model envisioned in the
original authorization.
Racial and ethnic minorities represent 30 percent of our Nation's
population, but only 23 percent of doctoral recipients in psychology,
social work and nursing. The Minority Fellowship Program (MFP) is a
unique workforce development initiative that trains ethnic minority
mental and behavioral healthcare professionals to provide services to
underserved communities. APA urges Congress to maintain level funding
for MFP ($5.1 million). This funding is needed given the recent
expansion of the program by granting eligibility to additional
disciplines to participate.
Administration on Aging (AoA).-- Older adults are one of the
fastest growing segments of the U.S. population and approximately 25
percent of older Americans have a mental or behavioral health problem.
In particular, older white males (age 85 and over) currently have the
highest rates of suicide of any group in the United States.
Accordingly, APA urges an expanded effort to address the mental and
behavioral health needs of older adults including implementation of the
mental and behavioral health provisions in the Older Americans Act
Amendments of 2006, to provide grants to States for the delivery of
mental health screening, and treatment services for older individuals
and programs to increase public awareness and reduce the stigma
associated with mental disorders in older individuals. APA also
recommends that AoA designate an officer to administer mental health
services for older Americans.
Family caregivers play an essential role in providing long-term
services and supports for the chronically ill and aging. For this
reason APA supports the Lifespan Respite Care Program and urges
Congress to appropriate $5 million for this initiative.
National Institutes of Health (NIH).--The APA supports the
recommendation of the Ad Hoc Group for Medical Research that the
Subcommittee recognize the National Institutes of Health (NIH) as a
critical national priority by providing at least $32 billion in funding
in fiscal year 2013. This recommendation represents the minimum
investment necessary to avoid further loss of promising research and at
the same time allows the NIH's budget to keep pace with biomedical
inflation.
While there are many programs at NIH worthy of being highlighted,
we want to mention some initiatives that are critically important to
APA's member scientists. Regarding the proposed reorganization of
substance use, abuse and addiction research at NIH, APA has long been
concerned that substance use, abuse and addiction research is
significantly underfunded when weighed against the public health and
public safety impact associated with alcohol, tobacco, and illicit
substance use. Any newly reorganized entity must be greater than the
sum of its parts. This Committee should encourage NIH to fully
integrate the substance use and related research portfolios of all
other NIH Institutes and Centers in order to develop a new
infrastructure for conducting that research with particular attention
to tobacco, comorbid mental health disorders, and other compulsive use
behaviors. NIH should establish rigorous and transparent baselines to
define current funding levels, and the allocation of those funds across
the existing NIH Institutes and Centers to ensure the ability to assess
the evolution of the portfolios and effectiveness of any organizational
change. This Committee should encourage the continued active
involvement of extramural scientists at every stage of this process as
well as the Office of Behavioral and Social Sciences Research.
To its credit NIH is moving quickly to identify the reasons,
documented in a recent Science article, that black investigators are
significantly less likely to receive RO1 awards than investigators from
other racial groups. The Committee should encourage NIH to devote all
necessary resources to this investigation and subsequent corrective
action. Additional efforts should go toward enhancing the pipeline of
minority investigators. The Office of Behavioral and Social Sciences
Research should be commended for its support of a workshop addressing
ways to establish a comprehensive and cohesive process to track the
efforts of Government, universities, private foundations and
associations to enhance minority participation in the sciences.
APA is concerned that the budget of the Office of Behavioral and
Social Sciences Research has been flat, at $27 million, for 3 years,
and urges the Committee to provide an inflationary increase at a
minimum.
The National Institute on Aging (NIA) has been the focus of
additional resources from the administration so that it may push
forward its research on Alzheimer's disease, now that Congress has
passed legislation authorizing a National Plan for Alzheimer's
research, care and services. The Committee is encouraged to give full
support to the NIA budget.
Biomedical approaches to HIV prevention are most effective when
they are combined with behavioral approaches. With recent scientific
advances demonstrating the promise of biomedical HIV prevention
interventions, behavioral research is needed more than ever to bolster
medication adherence and treatment uptake, to document real-world
decisionmaking processes associated with biomedical interventions, and
to better understand potential unintended and/or undesired consequences
of biomedical interventions. APA encourages the Committee to continue
to press the National Institute on Mental Health to support a robust
HIV/AIDS behavioral prevention research agenda that examines these
factors, and includes operations research to optimize combination HIV
prevention.
Health Resources and Services Administration (HRSA), Bureau of
Health Professions.--The APA requests that the Subcommittee include
$4.5 million for the Graduate Psychology Education Program (GPE) within
HRSA. An exemplary ``two-for-one'' Federal activity, this nationally
competitive grant program supports the training of psychology graduate
students while they provide mental and behavioral health services. In
rural and urban underserved communities, services are provided under
supervision at no charge to underserved populations, such as children,
older adults, chronically ill persons, victims of abuse or trauma,
including returning military personnel, veterans and their families,
and the unemployed. To date there have been 125 grants in 32 States to
universities and hospitals throughout the Nation. All psychology
graduate students who benefited from GPE funds are expected to work
with underserved populations and over 80 percent will work in
underserved areas immediately after completing the training.
The GPE Program is specifically authorized at between $10 million
and $12 million per year by the Public Health Service Act [Section
756(a)(2)]. Also Section 755(b)(1)(J) provides broader additional
authority. HRSA receives appropriations for the program under its
``Mental and Behavioral Health'' account in the Labor-HHS
appropriations bill. GPE was included in the President's budget at its
current funding level of $3 million.
Established in 2002, GPE grants have supported the
interdisciplinary training of over 3,000 graduate students of
psychology and other health professions to provide integrated
healthcare services to underserved populations. The fiscal year 2013
GPE funding request will focus especially on providing services to
returning military personnel, veterans and their families, unemployed
persons and others affected by the economic downturn, and older adults
in underserved communities. Also the GPE funding request will also be
used to create training opportunities at our Nation's Federally
Qualified Health Centers, which play a critical role in meeting the
healthcare needs of our nation's underserved persons.
Centers for Disease Control and Prevention (CDC).--As a member of
the Centers for Disease Control and Prevention (CDC) Coalition, APA
supports a minimum budget of $7.8 billion for CDC core programs in
fiscal year 2013. CDC programs play a key role in maintaining a strong
public health infrastructure, protecting Americans from public health
threats and emergencies, and in reducing healthcare costs and
strengthening the Nation's health system. The Prevention and Public
Health Fund and other fund transfers heavily supplant program budgets
in the fiscal year 2013 President's budget. The proposed $664 million
cut to CDC's budget authority in the President's budget request would
amount to a $1.4 billion decrease in CDC's budget authority since
fiscal year 2010. APA urges the Subcommittee to restore this cut.
APA is disappointed to see a decrease in funding of over 10 percent
for the Prevention Research Centers (PRC) program in the President's
budget request. A focus on prevention is essential to improving health
in America and the PRC network of community, academic, and public
health partners makes significant contributions to research on
evidenced based approaches in health promotion. APA urges Congress to
designate specific funding for the program again in fiscal year 2013,
including the resources necessary to support the Prevention Research
Centers so that this network of academic institutions and organizations
can continue to contribute widely and effectively to prevention
science.
As a member of the Friends of the National Center for Health
Statistics (NCHS), APA endorses the President's fiscal year 2013
request of $162 million in funding for the agency's base discretionary
budget. The health data collected by NCHS, on chronic disease
prevalence, healthcare disparities, emergency room use, teen pregnancy,
infant mortality, causes of death, and rates of insurance, to name a
few, are essential to the Nation's statistical and public health
infrastructure. Your leadership in securing steady and sustained
funding increases for NCHS over the last 5 fiscal years has helped NCHS
rebuild after years of underinvestment and restored the collection of
essential health data. In particular, APA is pleased with the Center's
progress in the past year field testing data collection methods for
sexual orientation, and hopes for the expedient incorporation of this
data, as well as that on gender identity, into the National Health
Interview Survey and other appropriate surveys.
APA is pleased to see the increase in funding for the National
Center for HIV/AIDS, Viral Hepatitis, STD, and TB Prevention in the
President's fiscal year 2013 budget, and in particular the $40.2
million increase in funding for domestic HIV/AIDS prevention and
research in line with the National HIV/AIDS Strategy. APA supports the
maximum possible funding for HIV/AIDS prevention for fiscal year 2013
to scale up combination HIV prevention. APA urges CDC to make
additional funds available for screening for mental health and
substance use disorders in HIV testing programs; behavioral
interventions to optimize biomedical interventions; and operations
research to inform implementation of high impact HIV prevention.
As a member of the Injury and Violence Prevention Stakeholder
Coalition, convened by the Safe States Alliance, APA supports
restoration of the CDC Injury Center to its fiscal year 2011 level of
$147 million and restoration of the Preventive Health and Health
Services Block Grant to its fiscal year 2011 level of $100 million. The
Injury Center and the Preventive Health and Health Services Block Grant
are critical to the State and local injury and violence prevention
efforts.
Again, APA is grateful for the opportunity to present these
recommendations for fiscal year 2013.
______

Prepared Statement of the American Public Health Association
The American Public Health Association is the oldest and most
diverse organization of public health professionals and advocates in
the world dedicated to promoting and protecting the health of the
public and our communities. We are pleased to submit our views
regarding fiscal year 2013 funding for the Centers for Disease Control
and Prevention, the Health Resources and Services Administration and
school-based health programs. We urge you to take our recommendations
into consideration as you work to develop the fiscal year 2013 Labor-
HHS-Education appropriations bill.
CDC
APHA believes that Congress should support CDC as an agency--not
just the individual programs that it funds. In our best judgment--given
the challenges and burdens of chronic disease, a potential influenza
pandemic, terrorism, disaster preparedness, new and reemerging
infectious diseases and our many unmet public health needs and missed
prevention opportunities--CDC will require funding of at least $7.8
billion for CDC's programs in fiscal year 2013. We are deeply
disappointed with the proposed $664 million cut to CDC's budget
authority contained in the President's fiscal year 2013 budget
proposal. In fact, when including the President's fiscal year 2013
request, CDC's budget authority would have been decreased by a
staggering $1.4 billion since fiscal year 2010. While CDC has received
and the President's fiscal year 2013 budget proposal directs
significant funding from the Prevention and Public Health Fund to CDC,
we believe this funding is essentially supplanting many of the cuts
made to CDC's budget authority. We urge you to restore this cut to
CDC's budget authority and to support the $1 billion available through
Prevention and Public Health Fund in fiscal year 2013.
By translating research findings into effective intervention
efforts, CDC is a critical source of funding for many of our State and
local programs that aim to improve the health of our 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. We urge you to restore the proposed
elimination of the Preventive Health and Health Services Block grant in
the President's budget, which is a critical source of funding for State
and local public health agencies.
CDC also serves as the command center for our Nation's public
health defense system against emerging and reemerging infectious
diseases. With the potential onset of a worldwide influenza pandemic,
in addition to the many other natural and man-made threats that exist
in the modern world, CDC has become 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.
CDC serves as the lead agency for bioterrorism and other public
health emergency preparedness and response and must receive sustained
support for its preparedness programs in order for our Nation to meet
future challenges. Given the challenges of terrorism and disaster
preparedness, and our many unmet public health needs and missed
prevention opportunities we urge you to provide adequate funding for
State and local capacity grants. Unfortunately, this is not a threat
that is going away.
The President's fiscal year 2013 budget proposes to consolidate a
number of chronic disease programs within CDC to promote better
coordination. If it is to be effective, we believe this proposal, the
Coordinated Chronic Disease Prevention and Health Promotion program,
must receive the resources needed to provide our States and communities
increased and sustainable funding to effectively improve efforts to
reduce the burden of chronic disease.
We encourage the Subcommittee to restore funding for CDC's National
Center for Environmental Health. Since 2009, NCEH funding has been cut
by 25 percent. We urge the committee to restore funding for the Healthy
Homes and Lead Poisoning Prevention program and to main the program and
Asthma program as separate and distinct programs. We ask the
Subcommittee to continue its recent efforts to maintain CDC's capacity
to help the Nation prepare for and adapt to the potential health
effects of climate change by providing CDC with level funding for
climate change and health activities.
We also urge you to restore funding for the Education and Research
Centers and for the Agriculture, Forestry and Fishing Program (AFF)
within the budget for the National Institute for Occupational Safety
and Health which are proposed for elimination in the President's
budget. These programs play an important role in protecting the health
and safety of American workers.
HRSA
HRSA operates programs in every State and territory and thousands
of communities across the country and is a national leader in providing
health services for individuals and families. The agency serves as a
health safety net for the medically underserved, including the nearly
50 million Americans who were uninsured in 2010 and 60 million
Americans who live in neighborhoods where primary healthcare services
are scarce. To respond to these challenges, APHA believes that the
agency will require an overall funding level of at least $7 billion for
fiscal year 2013.
Our request of $7 billion represents the amount necessary for HRSA
to continue to meet the healthcare needs of the American public.
Anything less will undermine the efforts of HRSA programs to improve
access to quality healthcare for millions of our neediest citizens.
Additionally, we remain concerned about the deep cuts the agency has
endured over the past few years; HRSA's discretionary budget has been
reduced by more than $1.2 billion since fiscal year 2010. Cuts of this
magnitude have had a serious negative impact on the agency's ability to
carry out critical public health programs and services for millions of
Americans. Therefore, our requested level of funding is necessary to
ensure HRSA is able to implement public health programs including
training for public health and healthcare professionals, providing
primary care services through community health centers, improving
access to care for rural communities, supporting maternal and child
healthcare programs and providing healthcare to people living with HIV/
AIDS.
Some of the major healthcare initiatives conducted by HRSA include:
--Health Professions programs that support the education and training
of primary care physicians, nurses, dentists, optometrists,
physician assistants, public health personnel and other allied
health providers; improve the distribution and diversity of
health professionals in medically underserved communities and
ensure a sufficient and capable health workforce able to
provide care for all Americans and respond to the growing
demands of our aging and increasingly diverse population. In
addition, the Patient Navigator Program helps individuals in
underserved communities, who suffer disproportionately from
chronic diseases, navigate the health system.
--Primary Care programs that support more than 7,000 community health
centers and clinics in every State and territory, improving
access to preventive and primary care in geographically
isolated and economically distressed communities. In addition,
the health centers program targets populations with special
needs, including migrant and seasonal farm workers, homeless
individuals and families, and those living in public housing.
--Maternal and Child Health programs including the Title V Maternal
and Child Health Block Grant, Healthy Start and others support
a myriad of initiatives designed to promote optimal health,
reduce disparities, combat infant mortality, prevent chronic
conditions, and improve access to quality healthcare for more
than 40 million women and children, including children with
special healthcare needs.
--HIV/AIDS programs that provide assistance to metropolitan and other
areas most severely affected by the HIV/AIDS epidemic; support
comprehensive care, drug assistance and support services for
people living with HIV/AIDS; provide education and training for
health professionals treating people with HIV/AIDS; and address
the disproportionate impact of HIV/AIDS on women and
minorities.
--Family Planning Title X services that ensure access to a broad
range of reproductive, sexual, and related preventive
healthcare for more than 5.2 million poor and low-income women,
men and adolescents at nearly 4,400 health centers nationwide.
This program helps improve maternal and child health outcomes
and promotes healthy families.
--Rural Health programs improve access to care for the more than 60
million Americans who live in rural areas. These programs
support community-based disease prevention and health promotion
projects, help rural hospitals and clinics implement new
technologies and strategies, and build health system capacity
in rural and frontier areas.
--Special Programs that include the Organ Procurement and
Transplantation Network, the National Marrow Donor Program, the
C.W. Bill Young Cell Transplantation Program, and National Cord
Blood Inventory, which help people who need potentially life-
saving transplants by connecting patients, doctors, donors, and
researchers to the resources they need to live longer,
healthier lives.
School Health
Nearly one-third of students in the United States do not graduate
from high school, and for Black, Latino and American Indian students,
the number is half. As indicated in Healthy People 2020, the leading
indicator determining health status in the United States is graduation
from high school. Thus, graduation from high school is not only a
predictor of economic success but also of long-term health.
Some of the social factors that influence whether or not a student
remains in school and graduates simultaneously influence their health
and vice versa. That is why these factors are also included in the
adolescent health objectives of Healthy People 2020. A number of
studies now recognize the cause and effect between social determinants
of health and achievement. The October 2011 issue of the Journal of
School Health identified seven educationally related health disparities
that contribute to the achievement gap and ultimately school dropout:
(1) hunger, (2) aggression and violence, (3) teen pregnancy, (4)
asthma, (5) vision, (6) physical, and (7) inattention and
hyperactivity.
SBHCs can address these issues and improve educational success of
at-risk students. Studies have also shown that SBHCs create the
conditions needed for educational success by meeting student's physical
and mental healthcare needs. They have been shown to reduce
absenteeism, improve grade point average, and improve the overall
school climate.
We urge you to provide the $50 million in fiscal year 2013 for
operation of school-based health centers as authorized in the Patient
Protection and Affordable Care Act. We also urge you to consider the
social factors that influence health and ultimately graduation and ask
you to provide $120 million for programs in the Office of Safe and
Healthy Students in the U.S. Department of Education.
Conclusion
In closing, we emphasize that public health programs require
stronger financial investments at every stage. Funding for these
programs makes up only a fraction of Federal spending and continued
cuts to public health and prevention programs will not balance our
budget, it will only lead to increased costs to our healthcare system.
Successes in biomedical research must be translated into tangible
prevention opportunities, screening programs, lifestyle and behavior
changes and other population-based interventions that are effective and
available for everyone. Without a robust and sustained investment in
our Nation's public health programs and agencies, we will fail to meet
the mounting health challenges facing our Nation.
______

Prepared Statement of the American Public Power Association
The American Public Power Association (APPA) appreciates the
opportunity to submit this statement supporting funding for the Low-
Income Home Energy Production Assistance Program (LIHEAP) for fiscal
year 2013.
APPA has consistently supported an increase in the authorization
level for LIHEAP. The administration's fiscal year 2013 budget requests
$3 billion for LIHEAP--a cut of $452 million from fiscal year 2012
levels. APPA supports extending the current level of $5.1 billion for
the program.
APPA is the national service organization representing the
interests of over 2,000 municipal and other State and locally owned
utilities throughout the United States (all but Hawaii). Collectively,
public power utilities deliver electricity to 1 of every 7 electricity
consumers (approximately 46 million people), serving some of the
Nation's largest cities. However, the vast majority of APPA's members
serve communities with populations of 10,000 people or less.
APPA is proud of the commitment that its members have made to their
low-income customers. Many public power systems have low-income energy
assistance programs based on community resources and needs. Our members
realize the importance of having in place a well-designed, low-income
customer assistance program combined with energy efficiency and
weatherization programs in order to help consumers minimize their
energy bills and lower their requirements for assistance. While highly
successful, these local initiatives must be coupled with a strong
LIHEAP program to meet the growing needs of low-income customers. In
the last several years, volatile home-heating oil and natural gas
prices, severe winters, high utility bills as a result of dysfunctional
wholesale electricity markets and the effects of the economic downturn
have all contributed to an increased reliance on LIHEAP funds. Even at
$5.1 billion, LIHEAP cannot provide assistance to all who qualify for
the program. Cutting this program by $2.5 billion would have very
serious consequences for those who rely on the program.
Also, when considering LIHEAP appropriations this year, we
encourage the subcommittee to provide advanced funding for the program
so that shortfalls do not occur in the winter months during the
transition from one fiscal year to another. LIHEAP is one of the
outstanding examples of a State-operated program with minimal
requirements imposed by the Federal Government. Advanced funding for
LIHEAP is critical to enabling States to optimally administer the
program.
Thank you again for this opportunity to relay our support for
increased LIHEAP funding for fiscal year 2013.
______

Prepared Statement of the Association of Public Television Stations and
the Public Broadcasting Service
On behalf of America's 361 public television stations, we
appreciate the opportunity to submit testimony for the record on the
importance of Federal funding for local public television stations.
Corporation for Public Broadcasting--Fiscal Year 2015 Request: $445
million, 2-year advance funded
More than 40 years after the inception of public broadcasting,
local stations continue to serve as the treasured educational and
cultural institutions envisioned by their founders, reaching America's
local communities with unique, essential and unsurpassed programming
and services.
Public television treats its audience as citizens rather than mere
consumers. We provide essential services to all Americans, not just the
18-49 year olds to whom advertisers hope to appeal to because of that
age group's spending habits. We serve everyone, everywhere, every day,
for free.
Public broadcasting serves the public good--in education, public
affairs, public safety, the preservation of the national memory and
celebration of the American culture, and many other areas--and richly
deserves public support. The overwhelming majority of Americans agree.
In a recent bipartisan poll conducted by Hart Research Associates/
American Viewpoint, nearly 70 percent of American voters, including
majorities of self-identifying Republicans, Independents, and Democrats
support continued Federal funding for public broadcasting. In addition,
the same poll shows that Americans consider PBS to be the second most
appropriate expenditure of public funds, behind only national defense.
Federal support for CPB and local public television stations has
resulted in a nationwide system of locally owned and controlled,
trusted, community-driven and community responsive media entities.
We seek Federal funding for public broadcasting because we are part
of the Nation's public service infrastructure, just like public
libraries, public schools and public highways.
Furthermore, the power of digital technology has enabled stations
to greatly expand their delivery platforms to reach Americans where
they are increasingly consuming media--online and on-demand--in
addition to on-air. At the same time that stations are expanding their
services and the impact they have in their communities, stations are
also facing unprecedented funding challenges--presenting them with the
greatest financial hurdles in their 40 year history. Funding from
traditional sources such as individuals, corporate underwriters,
foundations and State governments has become increasingly more
challenging to secure in this difficult economy. Continued Federal
support for public broadcasting is more important now than ever before.
Funding through CPB is absolutely essential to public television
stations. Stations rely on the Federal investment to develop local
programming, operate their facilities, pay their employees and provide
community resources on-air, online and on-the-ground. This funding is
particularly important to rural stations that struggle to raise local
funds from individual donors due to the smaller and often economically
strained population base. At the same time it is often more costly to
serve rural areas due to the topography and distances between
communities.
More than 70 percent of funding appropriated to CPB reaches local
stations in the form of Community Service Grants (CSGs). On average,
Federal spending makes up approximately 15 percent of local television
station's budgets. However, for many smaller and rural stations,
Federal funding represents more than 30-50 percent (and in a handful of
instances, an even larger percentage) of their total budget. For all
stations, this Federal funding is the ``lifeblood'' of public
broadcasting, providing critical seed money to local stations which
leverage each $1 of the Federal investment to raise over $6 from State
legislatures, private foundations and corporations, and ``viewers like
you.''
A 2007 GAO report concluded that Federal funding, such as CSGs, is
an irreplaceable source of revenue, and that ``substantial growth of
non-Federal funding appears unlikely.'' It also found that ``cuts in
Federal funding could lead to a reduction in staff, local programming
or services.'' This study was conducted before the severe economic
recession that struck in 2008, and its findings may be even more acute
today.
At an annual cost of about $1.37 per year for each American--
compared with $68 in Japan and $83 in Great Britain--public
broadcasting is a smart investment. This successful public-private
partnership creates important economic activity while providing an
essential educational and cultural service. Public broadcasting
directly supports over 24,000 jobs, and the vast majority of them are
in local public television and radio stations in hundreds of
communities across America.
In addition, the advent of digital technology has created enormous
potential for stations, allowing them to bring content to Americans in
new, innovative ways while retaining our fundamental public service
mission. Public television stations are now utilizing a wide array of
digital tools to expand their current roles as educators, local
conveners and vital sources of trusted information at a time when their
communities need them most. For example, in an effort to confront the
dropout crisis in America's high schools, CPB has developed the
American Graduate initiative, a significant investment and partnership
with local stations and their communities to address this daunting
problem that could have disastrous effects on America's future if it is
not soon addressed. Together with schools and organizations that are
already addressing the dropout crisis, the stations are providing their
resources and services to raise awareness, coordinate action with
community partners, and work directly with students, parents, teachers,
mentors, volunteers and leaders to lower the drop-out rate in their
respective communities.
Public television is the Nation's largest classroom. Local stations
provide free, cutting edge, educational content for all Americans so
that regardless of their family's income, children have access to safe,
non-commercial media that helps prepare them for success in school and
has been proven to help close the achievement gap.
Stations are also responding to the needs of the 21st century
classroom by expanding digital educational resources for teachers,
students and parents alike. For example, stations are working together
with PBS to create an online portal, PBS Learning Media, where
educators can access standards-based, curriculum-aligned digital
learning objects created from public television content as well as
material from the Library of Congress, National Archives, and other
contributors to the Department of Education's Learning Registry.
Stations are also building homegrown learning platforms like Maryland
Public Television's Thinkport online system, which the State
superintendent of schools has credited with helping raise Maryland's
students to the top of the student achievement rankings nationwide.
Local public television stations have also embraced the
opportunities of digital technology as a way to help address emergency
response and homeland security issues in their communities. Stations
like Las Vegas PBS have integrated their digital technology with local
public safety officials to provide enhanced emergency communications
that better aide the responders and provide citizens with needed
information during a crisis. Vegas PBS is also the largest job trainer
in Nevada, and this manifold mission of service is being emulated by
public television stations nationwide.
Local public television stations serve as essential communications
hubs in their communities providing unparalleled local coverage of
news, current events, and State legislatures that encourages every
American to become a more informed citizen. Public television is the
place for real public affairs programming, real news, real history,
real science, real art that makes us think, teaches us useful things,
and inspires us to be a better, more sophisticated, more civilized,
more successful people. We bring the wonders of the world--Broadway
shows, the finest museums, the best professors and much more--to the
most remote places in our country.
In order for our stations to continue playing this vital role in
their communities, APTS and PBS respectfully request $445 million for
CPB, 2-year advance funded for fiscal year 2015.
Two-year advance funding is essential to the mission of public
broadcasting. This longstanding practice, which was proposed by
President Ford and embraced by Congress in 1976, establishes a firewall
insulating programming decisions from political interference, enables
the leveraging of funds to ensure a successful public-private
partnership, and provides stations with the necessary lead time to plan
in-depth programming.
The 2-year advance funding mechanism insulates programming
decisions from political influence, as President Ford and the Congress
intended in their initial proposal for advance funding.
Public television's history of editorial independence has paid off
in unprecedented levels of public trust--for the ninth consecutive
year, the American people have ranked public broadcasting as one of the
most trusted national institutions. Advance funding and the firewall it
provides is vital to maintaining this credibility among the American
public.
In addition, local public broadcasting stations are able to
leverage the 2-year advance funding to raise State, local and private
funds, ensuring the continuation of this strong public-private
partnership. These Federal funds act as essential seed money for
fundraising efforts at every station, no matter its size.
Finally, the 2-year advance funding mechanism also gives stations
and producers the critical lead time needed to plan and produce high-
quality programs. The signature series that demonstrate the depth and
breadth of public television, like Ken Burns' ``The Civil War'' and
Henry Hampton's ``Eyes on the Prize'', take several years to produce.
Ken Burns's documentary schedule is already planned through 2019, and
it will educate the Nation on subjects ranging from the Dust Bowl to
the Vietnam war to the history of country music.
The fact that stations know they will have funding to support
projects like these in advance is critical for producers to be able to
actively develop groundbreaking projects. In addition to national
programming, 2-year advance funding is essential to the creation of
local programming over multiple fiscal years as stations convene the
community to identify needs, recruit partners, conduct research,
develop content and deliver services.
The 2-year advance funding is essential for stations as they
continue to plan the production of the unparalleled programming and
local services that educate, inspire, inform and entertain the American
people in the unique way only public broadcasting can.
Ready To Learn--Fiscal Year 2013 Request: $27.3 million (Department of
Education)
The Ready to Learn Television competitive grant program's success
in improving children's literacy and preparing them for school is
proven and unquestioned. Ready to Learn combines the power of public
media's on-air and online educational content with on-the-ground local
station community engagement to build the literacy skills of children
between the ages of two and eight, especially those from low-income
families or those most lacking reading skills.
Over the last 5 years, 60 independent studies have proven the
effectiveness of public media's Ready to Learn approach. In one study
pre-schoolers who were exposed to a curriculum composed of programming
and interactive games from top Ready to Learn programs, including
``SUPER WHY!'', ``Between the Lions'' and ``Sesame Street'', outscored
children who received a comparison (science) curriculum in all five
measures of early literacy. In addition, use of Ready to Learn
curriculum has been proven to help close the achievement gap by
enabling low-income students to catch up to their peers from high-
income households as shown when comparing standardized reading
assessments.
Pivoting off of this success in literacy, public media will expand
its Ready to Learn effort to include early math skills to continue
helping bridge the achievement gap by further innovating educational
media content, educating kids inside and outside the classroom, and
engaging local communities. This will include developing new content
like a PBS KIDS TV math series and three new math TV pilots. In
addition to the content, new tools will be provided including a
sophisticated progress tracking system that equips parents and
educators with the means to measure student progress, in real time.
Ready to Learn will continue to be rigorously evaluated for its appeal
and efficacy, so that the program can continue to offer America's
youngest citizens the tools they need to succeed in school and in life.
In addition to being research-based and teacher tested, the Ready
to Learn Television program also provides excellent value for our
Federal dollars. In the last 5-year grant round, public broadcasting
leveraged an additional $50 million in funding to augment the $73
million investment by the Department of Education for content
production. Without the investment of the Federal Government, this
supplemental funding would likely end.
The President's budget proposes consolidating Ready to Learn into a
larger grant program. APTS and PBS are concerned that the consolidation
of this program could lead to the elimination of this critical program
that has been the driving force behind the creation of public
television's unparalleled children's educational programming. The
proposed budget would significantly weaken Ready to Learn's unique
local-national partnership between communities and their public media
stations and PBS with its national scope and resources. This local-
national partnership has made Ready to Learn tremendously efficient and
effective and is a key element of the successful operation of the
program. Consolidation or elimination of the Ready to Learn Television
program would severely affect the ability of local stations to respond
to their communities' educational needs, removing the critical
resources provided by this program for children, parents and teachers.
Ready to Learn symbolizes the mission of public media and is a
shining example of a public-private partnership as Federal funds are
leveraged to create the most appealing and impactful children's
educational content that is supplemented by online and on-the-ground
resources. Without the Ready to Learn program, millions of families
would lose access to this incredible high-quality education content,
especially low-income and underserved households for whom this program
is targeted.
We urge the Committee to maintain the Ready to Learn Television
program as a stable line-item in the fiscal year 2013 budget and resist
the calls for consolidation. APTS and PBS respectfully request level
funding of $27.3 million for the Ready to Learn Television program in
fiscal year 2013.
One hundred seventy million Americans regularly rely on public
broadcasting--on television, on the radio, online, and in the
classroom--because we provide them something they need that no one else
in the media world provides: A place to think. A place to learn. A
place to grow. A tool for the citizen. None of this would be possible
without the Federal investment in public broadcasting.
We request that Congress continue its commitment to this highly
successful public-private partnership by continuing to provide level
funding for the 2-year advance of the Corporation for Public
Broadcasting and the Ready to Learn Program.
______

Prepared Statement of the Association of Rehabilitation Nurses
introduction
On behalf of the Association of Rehabilitation Nurses (ARN), I
appreciate having the opportunity to submit written testimony to the
Senate L-HHS Appropriations Subcommittee regarding funding for nursing
and rehabilitation related programs in fiscal year 2013. ARN represents
nearly 12,000 rehabilitation nurses that work to enhance the quality of
life for those affected by physical disability and/or chronic illness.
ARN understands that Congress has many concerns and limited resources,
but believes that chronic illnesses and physical disabilities are heavy
burdens on our society that must be addressed.
rehabilitation nurses and rehabilitation nursing
Rehabilitation nurses help individuals affected by chronic illness
and/or physical disability adapt to their condition, achieve their
greatest potential, and work toward productive, independent lives. We
take a holistic approach to meeting patients' nursing and medical,
vocational, educational, environmental, and spiritual needs.
Rehabilitation nurses begin to work with individuals and their families
soon after the onset of a disabling injury or chronic illness. We
continue to provide support and care, including patient and family
education, which empowers these individuals when they return home, or
to work, or school. The rehabilitation nurse often teaches patients and
their caregivers how to access systems and resources.
Rehabilitation nursing is a philosophy of care, not a work setting
or a phase of treatment. We base our practice on rehabilitative and
restorative principles by: (1) managing complex medical issues; (2)
interprofessional collaboration with other specialists; (3) providing
ongoing patient/caregiver education; (4) setting goals for maximum
independence; and (5) establishing plans of care to maintain optimal
wellness. Rehabilitation nurses practice in all settings, including
freestanding rehabilitation facilities, hospitals, long-term subacute
care facilities/skilled nursing facilities, long-term acute care
facilities, comprehensive outpatient rehabilitation facilities, home
health, and private practices, just to name a few.
As we celebrate the 2 year anniversary of the Affordable Care Act
(ACA)--which focused on creating a system that will increase access to
quality care, emphasizes prevention, and decreases costs--it is
critical that a substantial investment be made in the nursing workforce
programs and in the scientific research that provides the basis for
nursing practice. To ensure that patients receive the best quality care
possible, ARN supports Federal programs and research institutions that
address the national nursing shortage and conduct research focused on
nursing and medical rehabilitation, e.g., traumatic brain injury.
Therefore, ARN respectfully requests that the Subcommittee provide
increased funding for the following programs:
nursing workforce and development programs at the health resources and
services administration (hrsa)
ARN supports efforts to resolve the national nursing shortage,
including appropriate funding to address the shortage of qualified
nursing faculty. Rehabilitation nursing requires a high-level of
education and technical expertise, and ARN is committed to assuring and
protecting access to professional nursing care delivered by highly
educated, well-trained, and experienced registered nurses for
individuals affected by chronic illness and/or physical disability.
According to the Health Resources and Services Administration
(HRSA), in 2010, our healthcare workforce experienced a shortage of
more than 400,000 nurses.\1\ The demand for nurses will continue to
grow as the baby-boomer population ages, nurses retire, and the need
for healthcare intensifies. Implementation of the new health reform law
will also increase the need for a well-trained and highly skilled
nursing workforce. The Institute of Medicine has released
recommendations on how to help the nursing workforce meet these new
demands, but we are destined to fall short of these lofty goals if
there are not enough nurses to facilitate change.
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\1\ http://bhpr.hrsa.gov/healthworkforce/reports/nursing/
rnbehindprojections/4.htm.
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According to the U.S. Bureau of Labor Statistics, nursing is the
Nation's top profession in terms of projected job growth, with more
than 581,500 new nursing positions being created through 2018.\2\ These
positions are in addition to the existing jobs that healthcare
employers have not been able to fill. Educating new nurses to fill
these gaping vacancies is a great way to put Americans back to work and
simultaneously enhance an ailing healthcare system.
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\2\ http://www.bls.gov/oco/ocos083.htm#outlook.
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ARN strongly supports the national nursing community's request of
$251 million in fiscal year 2013 funding for Federal Nursing Workforce
Development programs at HRSA.
national institute on disability and rehabilitation research (nidrr)
The National Institute on Disability and Rehabilitation Research
(NIDRR) provides leadership and support for a comprehensive program of
research related to the rehabilitation of individuals with
disabilities. As one of the components of the Office of Special
Education and Rehabilitative Services at the U.S. Department of
Education, NIDRR operates along with the Rehabilitation Services
Administration and the Office of Special Education Programs.
The mission of NIDRR is to generate new knowledge and promote its
effective use to improve the abilities of people with disabilities to
perform activities of their choice in the community, and also to expand
society's capacity to provide full opportunities and accommodations for
its citizens with disabilities. NIDRR conducts comprehensive and
coordinated programs of research and related activities to maximize the
full inclusion, social integration, employment and independent living
of individuals of all ages with disabilities. NIDRR's focus includes
research in areas such as: employment, health and function, technology
for access and function, independent living and community integration,
and other associated disability research areas.
ARN strongly supports the work of NIDRR and encourages Congress to
provide the maximum possible fiscal year 2013 funding level.
national institute of nursing research (ninr)
ARN understands that research is essential for the advancement of
nursing science, and believes new concepts must be developed and tested
to sustain the continued growth and maturation of the rehabilitation
nursing specialty. The National Institute of Nursing Research (NINR)
works to create cost-effective and high-quality healthcare by testing
new nursing science concepts and investigating how to best integrate
them into daily practice. Through grants, research training, and
interprofessional 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 for those with chronic illness, and care for individuals at the
end of life. NINR's broad mandate includes seeking to prevent and delay
disease and to ease the symptoms associated with both chronic and acute
illnesses. NINR's recent areas of research focus include the following:
--End of life and palliative care in rural areas;
--Research in multi-cultural societies;
--Bio-behavioral methods to improve outcomes research; and
--Increasing health promotion through comprehensive studies.
ARN respectfully requests $150 million in fiscal year 2013 funding
for NINR to continue its efforts to address issues related to chronic
and acute illnesses.
traumatic brian injury (tbi)
According to the Brain Injury Association of America, 1.7 million
people sustain a traumatic brain injury (TBI) each year.\3\ This figure
does not include the 150,000 cases of TBI suffered by soldiers
returning from wars in Afghanistan and conflicts around the world.
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\3\ http://www.biausa.org/living-with-brain-injury.htm.
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The annual national cost of providing treatment and services for
these patients is estimated to be nearly $60 million in direct care and
lost workplace productivity. Continued fiscal support of the Traumatic
Brain Injury Act will provide critical funding needed to further
develop research and improve the lives of individuals who suffer from
traumatic brain injury.
Continued funding of the TBI Act will promote sound public health
policy in brain injury prevention, research, education, treatment, and
community-based services, while informing the public of needed support
for individuals living with TBI and their families.
ARN strongly supports the current work being done by the Centers
for Disease Control and Prevention (CDC) and HRSA on TBI programs.
These programs contribute to the overall body of knowledge in
rehabilitation medicine.
ARN urges Congress to support the following fiscal year 2013
funding requests for programs within the TBI Act: $10 million for CDC's
TBI registries and surveillance, prevention and national public
education and awareness efforts; $8 million for the HRSA Federal TBI
State Grant Program; and $4 million for the HRSA Federal TBI Protection
and Advocacy Systems Grant Program.
conclusion
ARN appreciates the opportunity to share our priorities for fiscal
year 2013 funding levels for nursing and rehabilitation programs. ARN
maintains a strong commitment to working with Members of Congress,
other nursing and rehabilitation organizations, and other stakeholders
to ensure that the rehabilitation nurses of today continue to practice
tomorrow. By providing the fiscal year 2013 funding levels detailed
above, we believe the Subcommittee will be taking the steps necessary
to ensure that our Nation has a sufficient nursing workforce to care
for patients requiring rehabilitation from chronic illness and/or
physical disability.
______

Prepared Statement of the Association for Research in Vision and
Ophthalmology
Biomedical research investment
Fiscal year 2013 is a pivotal time for the United States as the
Nation's leaders work hard toward the goal of recovering from an
historic economic recession. We agree with the President that education
and innovation are crucial investments for growing the economy and
creating jobs. We understand that difficult decisions have to be made
about fiscal year 2013 appropriation priorities, with imposed counter
pressures from the Budget Control Act. We urge Congress to carefully
consider the long term impact of not investing in research and
development (R&D) while other nations (e.g., China and India) increase
their investment, and while the United States faces a critical need to
control inflating healthcare costs. We were happy to see the importance
of R&D investment reflected in the President's budgets for the National
Science Foundation, the Department of Energy, and the Department of
Agriculture. We think the Presidential budget for NIH, which did not
maintain funding levels, is a mistake. Our Nation faces unprecedented
aging eye disease costs; these will radically increase without proper
investment in research that leads to treatments and cures.
Americans want biomedical research investment
The American public recognizes the importance of biomedical
research and is more likely to support candidates who support Federal
biomedical research.\1\ Specifically, ``85 percent of likely voters are
concerned about the impact of a decreased Federal investment in
research, including the possibility of scientists leaving their
profession or moving abroad to countries with a stronger research
investment.'' \1\ Biomedical research investment is a long term
strategy to ensure economic competitiveness of the United States. Each
dollar NIH spends on research results in a two-fold economic return to
local economies. NIH funding supports half a million U.S. jobs,
including extramural research supported by 325,000 scientists at more
than 3,000 institutions.\2\ In 2010, NIH funding ``directly and
indirectly supported 487,900 jobs nationwide, leading to 15 States
experiencing job growth of 10,000 or more.'' \2\ The spending results
in complementary private investments,\2\ not even accounting for local
growth near new research infrastructure (e.g., restaurants/other
services). Unfortunately, 55,000 jobs were lost when American Recovery
and Reinvestment Funding ended.\2\ Research is a marathon, not a
sprint. Sustained investment over time is needed for progress. We urge
elected representatives to consider what constituents value when making
decisions about NIH funding appropriations.
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\1\ Research!America March 14, 2012 public opinion poll.
\2\ United for Medical Research, May 2011, NIH Role in Sustaining
the U.S. Economy.
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ARVO has two major requests for the Senate:
--To recognize funding for the NIH as a national priority by funding
NIH in fiscal year 2013 at least $32 billion.
--To recognize vision health as a national priority by funding the
NEI at $730 million.
The requested funding levels will enable NIH and NEI to keep pace
with inflation and continue extraordinary progress made toward
improving vision health of the American public. Blindness prevention
and vision restoration are crucial for reducing healthcare costs,
maintaining productivity, ensuring independence, enhancing quality of
life, enabling safe mobility and navigation of affected individuals and
the community (e.g., driving safety). The $730 million requested for
NEI is a small amount, considering the annual cost of eye disease
(estimated in U.S. adults at $51.4 billion/year in 2007).\3\ The annual
economic cost did not account for child eye care costs or the baby
boomer demographic entered this decade, when the number of people
turning 65-years-old each day rose from 1,000 people per day to 6,000
people per day, continuing until 2029. Future eye care costs will be in
proportion to the number of children affected by diabetic and other eye
disease and the number of adults affected by aging eye diseases.\4\
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\3\ Prevent Blindness America, 2007, The Economic Impact of Vision
Problems.
\4\ Alliance for Aging Research, 2012, The Silver Book: Vision
Loss, Volume II.
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Biomedical infrastructure in crisis
Rep. Paul Ryan (R-WI) outlined a 10-year Federal spending reduction
plan earlier this month that did not recognize the crucial role that
biomedical research spending plays for the economic growth and well-
being of our country. Meanwhile, the biomedical research institutions
of our Nation, whose goal it is to address the national health needs
through research are economically stressed from a variety of sources
including: State budget restrictions, decreased availability of bridge
and philanthropic funding, and added expenses from increased regulatory
administrative costs detailed below.
Salary caps derail clinical research, new research programs and junior
researchers
On January 20, 2012 NIH issued guidance on congressionally imposed
salary caps, effectively reducing Executive Level II salaries by
$20,000. This decision might look like an insignificant 1 percent
budget reduction from a policy perspective. However, from a local
perspective on individual institutions, this decision generated more
interest than any other policy report by our organization in the past 4
years. Below are some preliminary institutional administrative reports
on the local impact.
--The cap disproportionately affects clinician-scientists, who
already make lower salaries than their colleagues in private
practice and industry settings. Effectively, this cap pushes
them out of research at a time when the United States is
placing more emphasis on translational research.
--Clinical departments are ceasing to offer seed money for new
faculty to jumpstart new research programs.
--Post-doctoral researchers in clinical departments are being let go
(at the most vulnerable stage in their career) to address lost
NIH salary reimbursements. Post-docs are highly trained,
relatively poorly paid (around $40,000/year) junior
investigators, who frequently fall between the cracks as they
are not faculty, staff, or students.
--John's Hopkins alone estimates the current salary cap will result
in a loss of $6.8 million per year in recoverable facility and
administration (F&A) costs, in addition to an earlier cap that
resulted in a $10 million per year loss in recoverable F&A.
Increased costs and reduced capacity
A set of new guidelines for the care and use of animals is being
implemented by NIH. The spirit and intent of the guidelines are
currently being followed in a manner consistent with the scientific
community concerns to limit the number of animals used and ensure they
are not subjected to unnecessary discomfort and pain. However, the
prescriptive nature of the new guidelines have the potential to be
interpreted as regulations that leave little room for professional
judgment based on local infrastructure and study specific variables. An
uncertainty about interpretation of the guidelines by inspectors is
certain to initiate changes in housing at great expense and loss of
capacity to individual institutions.
Transportation of animals is also being targeted. Non-human
primates, while infrequently used in vision research, are very
important and critical for certain studies. Members are starting to
rely on expensive charters to ship research animals, as airlines are
being targeted by passionate anti-animal research advocates.
The regulatory, public policies and transportation issues for
animal research are initiating a shift for pharmaceutical companies to
move pharmaceutical testing to countries with less stringent
regulations and easier access to research animals, which will be
unfortunate for the humane treatment of animals and will mean a loss of
jobs in the United States.
Approval path to a product graveyard
Members who conduct translational studies report that the Food and
Drug Administration (FDA) has a lack of a defined approval process for
ophthalmic drugs. They report that it is difficult to attract investors
for clinical trials in part because prior endeavors failed due to
inappropriate endpoints or measurements. Investors simply will not
invest in trials when they have to guess what steps are necessary to
achieve regulatory approval. We understand why such challenges exist
within FDA as the FDA has had to move from regulatory oversight of U.S.
drugs/devices/biologics to an international oversight environment with
limited budget for additional staff/resources. Yet, the FDA approval
process is a critical barrier to product approval, a process that
European countries made more efficient. Some companies and investors
now start their studies in Europe instead of the United States, with a
resulting loss of U.S. jobs due to these differences in regulatory
environments.
So much vision progress at stake
The very health of the vision research community is at stake with
the proposed declines in NEI funding. Not only will funding for new
investigators be at risk, but also that of seasoned investigators,
which threatens the continuity of research and the retention of trained
staff. When institutions must release staff due to lack of extramural
funding, highly trained people are lost to the field. This is
unfortunate. As NEI's fiscal year 2013 budget Director's overview
stated, ``NEI made a considerable investment in basic research that is
now creating unprecedented opportunities to develop new treatments that
address the root cause of vision loss''. Examples of progress made with
prior vision research investments include the following examples.
--Better age-related macular degeneration therapies are expected to
reduce the incidence of legal blindness by 72 percent and
visual impairment by 37 percent in 2 years.\4\
--Current treatments for abnormal blood vessel growth in diabetic
retinopathy patients reduced the rate of legal blindness within
5 years from 50 percent to less than 5 percent.\4\ Fifty
percent of treated patients experienced improved visual
function within 1 year. Laser treatment and vitrectomy reduced
the risk of blindness in patients with severe diabetic
retinopathy by 90 percent.\4\
--Prescription eye drops delay or prevent 50 percent of glaucoma
cases in African Americans.\4\
--Treatments that delay/prevent diabetic retinopathy now save the
United States $1.6 billion annually.\4\
In summary, ARVO requests NEI funding at $730 million, reflecting
biomedical inflation plus modest growth commensurate with that of NIH
overall, since our Nation's investment in vision health is an
investment in overall health. NEI's breakthrough research is a cost-
effective investment, since it is leading to treatments and therapies
that can ultimately delay, save, and prevent health expenditures,
especially those associated with the Medicare and Medicaid programs. It
can also increase productivity, help individuals to maintain their
independence, and generally improve the quality of life, especially
since vision loss is associated with increased depression and
accelerated mortality.
About ARVO
ARVO is the world's largest international association of vision
scientists (scientists who study diseases and disorders of the eye).
More than 7,000 members are supported by NIH grant funding. Vision
science is a multi-disciplinary field, but the NEI is the only
freestanding NIH institute with a mission statement that specifically
addresses vision research. ARVO supports increased fiscal year 2013 NIH
funding.
ARVO is also a member of the National Alliance for Eye and Vision
Research, and supports their testimony. www.eyeresearch.org
______

Prepared Statement of Autism Speaks
Chairman Harkin, Ranking Member Shelby, and members of the
subcommittee, thank you for the opportunity to offer testimony on the
importance of continued funding for autism.
My name is Peter Bell and I am executive vice president of programs
and services for Autism Speaks. My responsibilities at Autism Speaks
include overseeing the foundation's family services and Government
relations activities. I also serve as an advisor to our science
division. Autism Speaks is the world's leading autism science and
advocacy organization. Since its inception in 2005, Autism Speaks has
committed over $173 million to autism research as well as developing
innovative resources for individuals with autism and their families.
Our mission is to change the future for those who live with autism. We
do this through funding science, raising awareness, helping families,
and advocating for those who live on the spectrum.
I am also the proud father of a child with autism. His name is
Tyler and he recently turned 19. In 1996 when my wife and I first heard
the words ``your son has autism,'' we were stunned. Our only reference
to autism at the time was from the Oscar-winning movie ``Rain Man.'' We
had never known anyone with autism, nor did we know any families who
had a child with autism. I suspect this would have been true for most
of you on this committee. However, today, I'm willing to wager that
every one of you personally knows someone or some family who is touched
by autism. Each year, nearly 50,000 families hear those same words--
``your child has autism.''
Twenty years ago, the experts estimated that 1 of every 2,500
children had autism. The latest statistic, announced on March 29 by the
Centers for Disease Control and Prevention (CDC), is 1 in 88, 1 in 54
for boys. Increasingly we hear the word ``epidemic'' associated with
autism in America. But we at Autism Speaks are hearing something else
from the families in our community and it is getting louder by the day.
And that is the question, ``what is our Government doing to
confront this public health crisis?'' We are increasingly frustrated
and frankly confused by what appears to be a lack of will from
Washington. When the number of people on the spectrum is going up, why
are the dollars for autism research and prevention going down?
When Bob and Suzanne Wright founded Autism Speaks in 2005, they
were shocked that a disorder as prevalent as autism commanded so little
in terms of resources devoted to research and treatment when compared
to other, less common disorders. Working together with thousands of
families affected by autism, we were able to enact the Combating Autism
Act of 2006. Signed by President Bush, this historic act was considered
to be the most comprehensive piece of single-disease legislation ever
passed by Congress. Last year, working with many of you in bipartisan
fashion, the Combating Autism Act was reauthorized when President Obama
signed a 3-year reauthorization into law on September 30.
Autism Speaks and the 1 million plus members of our community are
of course grateful for this funding. But we also recognize it provides
but a fraction of the billion dollar a year commitment that had been
promised by President Obama, a commitment that better reflects the
actual need for funding meaningful research, treatment, and services.
That disappointment has now been compounded by fears that the funding
that was authorized just last September may now be in jeopardy as a
result of this year's appropriations process.
Funding for the CDC to continue prevalence research under the
President's budget request was $700,000 below the $22 million
authorized funding level and then inexplicably incorporated within the
Prevention and Public Health Fund created under the Affordable Care
Act. As you know, recent legislation reduces the fund by 20 percent in
fiscal year 2013, further jeopardizing the CDC's autism surveillance
activities. Since 2000, funding for this work has always been included
within the CDC's total discretionary budget authority. It should
continue there. Autism Speaks requests that you include $22 million for
autism activities within the National Birth Defects Center, within
CDC's discretionary budget authority.
Further, we urge you to fully fund the basic and clinical research
initiatives for autism at the levels called for under the Combating
Autism Reauthorization Act (CARA). Specifically, we ask you to support
at least $161 million for the NIH's autism research programs and $48
million for HRSA's autism research, treatment, and training activities.
We also urge the Subcommittee to fund CDC's autism activities within
CDC's Discretionary Budget Authority.
As I mentioned earlier, Autism Speaks has committed more than $173
million through private fundraising to scientific research studies,
fellowships, and scientific initiatives. Other private foundations have
contributed in excess of $125 million. But we can't do this alone. We
ask that Congress restore full funding as authorized under CARA for
autism research, surveillance and treatment. And we ask that Washington
treat autism as the epidemic it has become.
______

Prepared Statement of the American Society of Hematology
The American Society of Hematology (ASH) thanks the subcommittee
for the opportunity to submit written testimony on the fiscal year 2013
Departments of Labor, Health and Human Services, and Education
appropriations bill.
ASH represents approximately 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; life-threatening conditions, including
thrombosis and bleeding disorders; and congenital diseases such as
sickle cell anemia, thalassemia, and hemophilia. In addition,
hematologists have been pioneers in the fields of bone marrow
transplantation, stem cell biology and regenerative medicine, gene
therapy, and the development of many drugs for the prevention and
treatment of heart attacks and strokes.
Over the past 60 years, American biomedical research has led the
world in probing the nature of human disease. This research has led to
new medical treatments, saved innumerable lives, reduced human
suffering, and spawned entire new industries. This research would not
have been possible without support from the National Institutes of
Health (NIH). NIH-funded research drives medical innovation that
improves health and quality of life through new and better diagnostics,
improved prevention strategies, and more effective treatments.
Discoveries gained through basic research yield the medical advances
that improve the fiscal and physical health of the country.
Funding for hematology research has been an important component of
this investment in the Nation's health. With the advances gained
through an increasingly sophisticated understanding of how the blood
system functions, hematologists have changed the face of medicine
through their dedication to improving the lives of patients. As a
result, children are routinely cured of acute lymphoblastic leukemia
(ALL); more than 90 percent of patients with acute promyelocytic
leukemia (APL) are cured with a drug derived from vitamin A; older
patients suffering from previously lethal chronic myeloid leukemia
(CML) are now effectively treated with well-tolerated pills; and
patients with multiple myeloma are treated with new classes of drugs.
Hematology advances also help patients with other types of cancers,
heart disease, and stroke. Blood thinners effectively treat or prevent
blood clots, pulmonary embolism, and strokes. Death rates from heart
attacks are reduced by new forms of anticoagulation drugs. Stem cell
transplantation can cure not only blood diseases but also inherited
metabolic disorders, while gene therapy holds the promise of
effectively treating even more genetic diseases. Even modest
investments in hematology research have yielded large dividends for
other disciplines.
Fiscal Year 2013 Funding Request
ASH supports the recommendation of the Ad Hoc Group for Medical
Research that the Subcommittee recognize NIH as a critical national
priority by providing at least $32 billion in funding in the fiscal
year 2013 Labor-HHS-Education appropriations bill. This funding
recommendation represents the minimum investment necessary to avoid
further loss of promising research and at the same time allows the
NIH's budget to keep pace with biomedical inflation.
It is critically important that our country continues to capitalize
on the momentum of previous investments to drive research progress to
develop new treatments for serious disorders, train the next generation
of scientists, create jobs, and promote economic growth and innovation.
Adequate funding is necessary for NIH to sustain current research
capacity and encourage promising new areas of science and cures.
For Fiscal Year 2013, ASH Seeks Congressional Support for the Following
Activities
In fiscal year 2013, 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:
Stem Cells and Regenerative Medicine: Improving Current
Technologies to Cure Blood Disorders
Hematologists have been at the forefront of research in stem cell
biology by studying blood cell development and exploring stem cells'
potential to repair damaged tissue, fight infections, and reduce
autoimmune diseases. The techniques and principles used by
hematologists in studying the blood system stem cells have been applied
to stem cells from many other tissues with great success, spawning a
huge research effort across all areas of medicine.
Researchers have made significant progress in developing re-
programmed adult cells, called induced pluripotent stem (iPS) cells,
which can subsequently develop into any tissue of the body. iPS cells
can be generated and used in patients who have genetic blood diseases
as well as other complex diseases because they will not be attacked by
a patient's own immune system, they serve as a continuous source of
cells, and they are amenable to genetic manipulation.
Recent research has suggested that iPS cells can be manipulated to
become blood stem cells and can be used as a transplant source for
patients who do not have a matched donor. This will greatly enhance
bone marrow and cord blood stem cell transplantation for the treatment
of blood cancers and other hematologic disorders and subsequently
inform our understanding of transplantation-related morbidities for
other organs. iPS-generated red blood cells from rare blood types also
could be used in blood banking as reagents to identify patients and
blood units suitable for transfusion.
Future stem cell advances are highly dependent on the ability to
transplant stem cells at high efficiencies and then have them perform
well once transplanted. However, several barriers remain that currently
prevent the clinical translation of iPS cell technology. Compared to
other sources of stem cells, iPS cells have slower growth kinetics, are
more genomically unstable, and have decreased efficiency for
differentiation. These barriers are also important areas for future
research.
ASH applauds the efforts of the National Heart, Lung, and Blood
Institute (NHLBI) to conduct further research in the development of
blood stem cells from iPS cells and to address the barriers to the
clinical translation of iPS cell technology.
Research in Sickle Cell Trait and Exercise-Related Illness
Sickle cell disease (SCD) is an inherited blood disorder that
affects 80,000-100,000 Americans, mostly but not exclusively of African
ancestry. SCD causes production of abnormal hemoglobin, resulting in
severe anemia, pain, other devastating disabilities, and, in some
cases, premature death.
Eight to 10 percent of African-Americans have sickle cell trait.
Individuals with sickle cell trait do not have SCD, but are carriers of
one defective gene associated with SCD. Millions of Americans with
sickle cell trait enjoy normal life spans without serious health
consequences. At the same time, possible health risks have been
reported for individuals with sickle cell trait including increased
incidence of renal failure and malignancy, thromboembolic disorders,
splenic infarction as a high altitude complication, and exertion-
related sudden death.
In April 2010, the National Collegiate Athletic Association (NCAA)
adopted a policy requiring Division I institutions to perform sickle
cell trait testing for all incoming student athletes. This policy has
been controversial because there are no high quality (well-controlled,
hypothesis-driven, prospective) studies on sickle cell trait and
exertional collapse or evidence to justify it.
There is a need for increased biomedical and population-based
research on sickle cell trait and its relation to exertion-related
illness as well as other conditions. Based on its 2010 Consensus
Conference on this topic, NHLBI has identified a research agenda and
ASH, the American Academy of Sports Medicine, and the NCAA have met to
discuss potential studies to pursue. It is important that the research
agenda is moved forward collaboratively under the direction of the
NHLBI.
Conclusion
Hematology research offers enormous potential to better understand,
prevent, treat, and cure a number of blood-related and other
conditions. Recent investments have created dramatic new research
opportunities, spurring advancements and precipitating the promise of
personalized medicine that will yield far-reaching health and economic
benefits. Trials to find new therapies and cures for millions of
Americans with blood cancers, bleeding disorders, clotting problems,
and genetic diseases are just a few of the important projects that
could be delayed unless NIH continues to receive predictable and
sustained funding.
ASH urges the Subcommittee to continue to be a champion for
research and support at least $32 billion in funding for NIH in fiscal
year 2013. The American people are depending on you to ensure the
Nation does not lose the health and economic benefits of our
extraordinary commitment to medical research.
Thank you again for the opportunity to submit testimony. Please
contact Tracy Roades, ASH Research Advocacy Manager, at
[email protected], or Ulyana Desiderio, PhD, ASH Senior Manager
for Scientific Affairs, at [email protected], if you have any
questions or need further information concerning hematology research or
ASH's fiscal year 2013 funding request.
______

Prepared Statement of the American Society for Microbiology
The American Society for Microbiology (ASM) is pleased to submit
the following statement on the fiscal year 2013 appropriation for the
Centers for Disease Control and Prevention (CDC). The ASM is the
largest single life science organization in the world with
approximately 38,000 members. The ASM strongly supports the leadership
role of CDC, in partnership with State and local health departments and
global organizations, in safeguarding the public health and protecting
against infectious disease threats through surveillance, laboratory
diagnosis, and control and prevention strategies.
The ASM is greatly concerned that the proposed fiscal year 2013
budget for CDC of $5.1 billion represents a decrease of $664 million,
or 11.6 percent. The CDC budget may be reduced in fiscal year 2013 by
an additional 8 percent as the result of an across-the-board,
sequestration provision in the Budget Control Act. The fiscal year 2013
decreases accelerate declines in CDC's funding that have occurred in
the past several years. Such cuts will inevitably have a severe impact
on CDC's ability to protect the Nation from disease threats and public
health emergencies. CDC oversees programs that are critical to
addressing vaccine preventable diseases, foodborne diseases, pandemic
influenza, vector-borne and zoonotic diseases, high consequence
pathogens, antimicrobial resistance, healthcare acquired infections,
and outbreak response activities. Because of declining funding for CDC
in recent years, its core infectious disease budget has eroded and
these reductions threaten core epidemiology, laboratory and
surveillance capacity, as well as modern technologies and methods to
ensure that CDC laboratories, researchers and outbreak response teams
are able to continue critical infectious disease activities. In the
past, declines in resources for prevention and control of infectious
diseases have resulted in disease reemergence, leading to significantly
higher costs for the healthcare system and for disease containment
efforts. The ominous increase in measles cases seen in the United
States in 2011 is an example of the potential for disease reemergence
when public health programs are not optimized.
Although concerned about CDC's overall budget, the ASM does support
those areas that have received funding increases. These include the
proposed increase for the National Center for Emerging and Zoonotic
Infectious Diseases (NCEZID) of $27 million and for the National Center
for HIV/AIDS, Viral Hepatitis, Sexually Transmitted Infections and
Tuberculosis Prevention of $35 million. The NCEZD includes CDC's
antimicrobial resistance activities for surveillance, data collection
and stewardship which require additional resources to address the
danger of pathogens resistant to antibiotics. The ASM is pleased to see
the increase of $17 million for food safety activities to restore and
improve State and local surveillance and outbreak response capacity and
move toward implementation of CDC's provisions of the Food Safety
Modernization Act including Centers of Excellence. The ASM also
supports the increase of $12.6 million for the National Healthcare
Safety Network (NHSN). This investment is needed as the number of
hospitals, long term care facilities, and hemodialysis centers that are
now using NHSN has risen dramatically in the last 2 years in response
to State and Federal efforts to control healthcare associated
infections. The additional funds for NHSN will allow CDC to maintain
and update the system to meet the increased demands and optimally
target prevention and control measures.
The ASM is concerned about the proposed cut of $15.5 million in
funding to State and local preparedness and response capacity which
threatens the Nation's preparedness for infectious disease outbreaks
and other hazards. The strategic national stockpile is reduced by $64
million in the administration's proposed budget. CDC is one of the few
Federal agencies providing continuous surveillance, detection and
response for chemical, biological, radiological and nuclear threats, as
well as natural disasters, outbreaks and epidemics. CDC fulfills this
critical role by supporting State and local health departments,
safeguarding deadly pathogens, managing the strategic national
stockpile, creating national tracking and surveillance systems and
overseeing the national laboratory network. The fiscal year 2013 budget
represents a decrease of $54 million below fiscal year 2012 for these
critical activities, including elimination of funding for the Academic
Centers for Public Health Preparedness. We urge Congress to reject
these reductions and to restore funding for these important programs.
CDC Funding Supports Strategies to Protect Public Health
CDC activities are critical to preventing disease and disability
across the United States and abroad. Through partnerships with local,
State, Federal, and international institutions, CDC has created disease
prevention campaigns that combine scientific research, public education
and training of health professionals, case surveillance systems, and
prevention protocols. Only programs of wide scope and complexity like
those administered by CDC can be effective against major health issues,
such as drug resistant pathogens and microbial threats to the Nation's
food supply.
Antimicrobial Resistance.--Both United States and global health
officials list microorganisms resistant to available drugs as one of
their top priorities. According to the World Health Organization (WHO),
there are about 440,000 new cases of multidrug resistant tuberculosis
(MDR TB) each year and at least 150,000 MDR TB deaths. Drug resistant
cases of malaria and cholera are rising in number, and healthcare
facilities worldwide are beset by unacceptable rates of AR infections
like methicillin resistant Staphylococcus aureus (MRSA) and Clostridium
difficile infections (CDI). Recently CDC surveillance has collected
case reports from across the United States of bacteria, including E.
coli, that produce Klebsiella pneumoniae carbapenemase (KPC), an enzyme
that makes bacteria resistant to most known treatments.
In large part due to CDC partnerships and prevention initiatives,
there has been a 60 percent reduction of MRSA in Veterans
Administration facilities and a 2010 report demonstrated a significant
MRSA decline in United States healthcare settings in general. CDC data
also show that rates of MRSA bloodstream infections in hospitalized
patients fell nearly 50 percent from 1997 to 2007. Last November, CDC
initiated a new antibiotic tracking system within its National
Healthcare Safety Network (NHSN) for monitoring in hospital antibiotic
use electronically. Promotion of appropriate antimicrobial stewardship
is a critical component of a comprehensive program to reverse the
impact of antibiotic resistance.
Healthcare Associated Infections (HAIs).--Pathogens like MRSA that
are increasingly resistant to therapeutics are particularly alarming
among vulnerable patients being treated for other medical conditions.
Last year CDC expanded its NHSN surveillance system from 3,400 to 5,000
hospitals, hemodialysis and long term acute care facilities, and other
facilities faced with patient infections acquired in house. NHSN data
are strong evidence that CDC education and surveillance programs
achieve gains against these infections. For example, infections
reported to NHSN that declined in 2010 included a 33 percent reduction
in central line associated bloodstream infections and 35 percent among
critical care patients. Such declines result in billions of dollars of
cost savings to the healthcare system, although the economic and human
costs of HAIs remain far too high. CDC estimates that 1 out of 20
hospitalized patients will develop an infection while receiving
treatment for other conditions. Continued investments in addressing
other costly healthcare associated infections such as surgical site
infections and ventilator associated pneumonia should have similar
impacts to those seen with bloodstream infections.
Immunization.--CDC campaigns have made impressive progress against
childhood vaccine preventable diseases in the United States and,
jointly with WHO and other stakeholders, worldwide. A recent CDC report
listing the most significant global public health achievements in the
past decade included various vaccination programs that prevent 2.5
million deaths every year among young children, that is, measles,
polio, and diphtheria tetanus pertussis vaccinations. Global mortality
from measles has declined from an estimated 733,000 deaths in 2000 to
164,000 in 2008. Since 1988, polio incidence has fallen by 99 percent,
from more than 350,000 cases to 1,410 in 2010, with four remaining
endemic countries. In December, CDC activated its Emergency Operations
Center to strengthen its partnership with the Global Polio Eradication
Initiative. However, more than 1 million infants and young children
still die from vaccine preventable pneumococcal disease and rotavirus
diarrhea every year, and multiple other diseases take lives that could
be saved through immunization. However, as noted above, the increase in
measles cases seen in the United States in 2011 and similar increases
in pertussis in 2010-2011 demonstrates the importance of continued
investment in vaccination programs to keep these diseases at bay.
The CDC continues to make progress in raising immunization coverage
levels for some of the newly available vaccines. In the United States,
vaccinating infants against rotavirus has shown impressive gains
against a major cause of severe diarrhea in infants and young children.
Before introduction of the rotavirus vaccines in 2006, the pathogen was
responsible for about 200,000 emergency room visits and 55,000-70,000
hospitalizations per year. Intensive immunization campaigns resulted in
high percentages of protected children, responsible for a 75 percent
decline in rotavirus related hospitalizations in 2007-2008 compared
with pre vaccine levels. Federal estimates indicate that for every
dollar invested in immunizing Americans, we save $10.20 in direct
medical costs.
Food Safety.--Based on surveillance data, CDC believes that
foodborne contaminants are responsible for about 128,000 United States
hospitalizations annually. The 31 known microbial pathogens linked to
foodborne illness account for an estimated 9.4 million of the roughly
47.8 million illnesses yearly, the remaining blamed on ``unspecified
agents.'' Five pathogens targeted by CDC account for more than 90
percent of the identified agent cases: norovirus, Salmonella,
Clostridium perfringens, Campylobacter, and Staphylococcus aureus. The
agency's food safety activities utilize multiple tools that include
case reporting systems, public and food processor education, and
product recalls. CDC will support five Food Safety Centers of
Excellence at State health departments across the country. A 2011 CDC
report summarizing 15 years of case surveillance showed that illnesses
from E. coli O157 have been cut nearly in half and the overall rates of
six foodborne infections have been reduced by 23 percent, but warned
that Salmonella caused infections have risen 10 percent. However,
problems like the 2011 outbreak of listeriosis associated with
cantaloupes, the deadliest foodborne outbreak in the United States in
decades, demonstrates the importance of prompt recognition and response
to foodborne disease, including laboratory capacity to make the
diagnosis and fingerprint the strains.
Public Safety and Preparedness.--The ASM is concerned that the
administration's fiscal year 2013 budget decreases funding for some
important CDC biodefense and emergency preparedness activities.
Programs like the Strategic National Stockpile build our national
capabilities against both intentionally released and naturally
occurring infectious agent threats. The agency oversees a national
laboratory network, develops science based expertise in numerous health
threats, and serves as primary first responder during sporadic disease
outbreaks, epidemics, and a broad spectrum of other crises. With State
and local budgets strained economically, it is all the more important
that CDC is able to fully support health departments across the
country. The ASM also urges Congress recognize that funding is needed
to ensure CDC's own laboratories and personnel continue to serve as
national and global leaders against infectious disease and other health
threats.
CDC Funding Supports Research and Education to Prevent Infectious
Disease
The CDC Office of Infectious Diseases (OID), which oversees the
National Center for Immunization and Respiratory Diseases, the National
Center for Emerging and Zoonotic Infectious Diseases, and the National
Center for HIV/AIDS, Viral Hepatitis, STD and TB Prevention addresses
antimicrobial resistance, chronic viral hepatitis, food and water
safety, healthcare associated infections, HIV/AIDS, respiratory
infections, vaccine preventable diseases, and zoonotic and vectorborne
diseases. The ASM strongly supports funding for OID efforts to
identify, treat, and prevent a long list of infectious diseases that
kill millions each year. CDC's infectious disease programs play a
critical role in protecting all Americans from the dangers of microbial
threats, and we cannot allow these important functions to continue to
erode.
The ASM urges Congress to provide needed new resources in fiscal
year 2013 for the CDC budget to strengthen science based programs that
have so effectively investigated, controlled, and, most importantly,
prevented disease and disability. This funding is critical to
maintaining the CDC laboratories, expert personnel, education and
prevention campaigns, and CDC supported collaborations that work
together daily to protect people in this Nation and worldwide.
______

Prepared Statement of the American Society for Nutrition
The American Society for Nutrition (ASN) appreciates the
opportunity to submit testimony regarding fiscal year 2013
appropriations for the National Institutes of Health (NIH) and the
Centers for Disease Control and Prevention's National Center for Health
Statistics (NCHS). Founded in 1928, ASN is a nonprofit scientific
society with more than 4,500 members in academia, clinical practice,
Government and industry. ASN respectfully requests $32 billion for the
National Institutes of Health, and we urge you to adopt the President's
request of $162 million for the National Center for Health Statistics
in fiscal year 2013.
Basic and applied nutrition research on the relationship between
nutrition and chronic disease, nutrient composition, and nutrition
monitoring are critical for the health of all Americans and the U.S.
economy. Awareness of the growing epidemic of obesity and the
contribution of chronic illness to burgeoning healthcare costs has
highlighted the need for improved information on dietary components,
dietary intake, strategies for dietary change and nutritional
therapies. The health costs of obesity alone are estimated at $147
billion each year. This enormous health and economic burden is largely
preventable, along with the many other chronic diseases that plague the
United States. It is for this reason that we urge you to consider these
recommended funding levels for two agencies under the Department of
Health and Human Services that have profound effects on nutrition
research, nutrition monitoring, and the health of all Americans--the
National Institutes of Health and the National Center for Health
Statistics.
National Institutes of Health
The National Institutes of Health (NIH) is the Nation's premier
sponsor of biomedical research and is the agency responsible for
conducting and supporting 86 percent (approximately $1.4 billion) of
federally funded basic and clinical nutrition research. Nutrition
research, which makes up about 4 percent of the NIH budget, is truly a
trans-NIH endeavor, being conducted and funded across multiple
Institutes and Centers. Some of the most promising nutrition-related
research discoveries have been made possible by NIH support. In order
to fulfill the full potential of biomedical research, including
nutrition research, ASN recommends an fiscal year 2013 funding level of
$32 billion for the NIH, a modest increase over the current funding
level of $30.64 billion.
The modest increase we recommend is necessary to maintain both the
existing and future scientific infrastructure. The discovery process--
while it produces tremendous value--often takes a lengthy and
unpredictable path. Economic stagnation is disruptive to training,
careers, long range projects and ultimately to progress. NIH needs
sustainable and predictable budget growth to achieve the full promise
of medical research to improve the health and longevity of all
Americans. It is imperative that we continue our commitment to
biomedical research and continue our Nation's dominance in this area by
making the NIH a national priority.
Over the past 50 years, NIH and its grantees have played a major
role in the growth of knowledge that has transformed our understanding
of human health, and how to prevent and treat human disease. Because of
the unprecedented number of breakthroughs and discoveries made possible
by NIH funding, scientists are helping Americans to live healthier and
more productive lives. Many of these discoveries are nutrition-related
and have impacted the way clinicians prevent and treat heart disease,
cancer, diabetes and other chronic diseases. By 2030, the number of
Americans age 65 and older is expected to grow to 72 million, and the
incidence of chronic disease will also grow. Sustained support for
basic and clinical research is required if we are to successfully
confront the healthcare challenges associated with an older, and
potentially sicker, population.
CDC National Center for Health Statistics
The National Center for Health Statistics (NCHS), housed within the
Centers for Disease Control and Prevention, is the Nation's principal
health statistics agency. The NCHS provides critical data on all
aspects of our healthcare system, and it is responsible for monitoring
the Nation's health and nutrition status through surveys such as the
National Health and Nutrition Examination Survey (NHANES), that serve
as a gold standard for data collection around the world. Nutrition and
health data, largely collected through NHANES, are essential for
tracking the nutrition, health and well-being of the American
population, and are especially important for observing nutritional and
health trends in our Nation's children.
Nutrition monitoring conducted by the Department of Health and
Human Services in partnership with the U.S. Department of Agriculture
Agricultural Research Service is a unique and critically important
surveillance function in which dietary intake, nutritional status, and
health status are evaluated in a rigorous and standardized manner.
Nutrition monitoring is an inherently governmental function and
findings are essential for multiple Government agencies, as well as the
public and private sector. Nutrition monitoring is essential to track
what Americans are eating, inform nutrition and dietary guidance
policy, evaluate the effectiveness and efficiency of nutrition
assistance programs, and study nutrition-related disease outcomes.
Funds are needed to ensure the continuation of this critical
surveillance of the nation's nutritional status and the many benefits
it provides.
Through learning both what Americans eat and how their diets
directly affect their health, the NCHS is able to monitor the
prevalence of obesity and other chronic diseases in the United States
and track the performance of preventive interventions, as well as
assess ``nutrients of concern'' such as calcium, which are consumed in
inadequate amounts by many subsets of our population. Data such as
these are critical to guide policy development in the area of health
and nutrition, including food safety, food labeling, food assistance,
military rations and dietary guidance. For example, NHANES data are
used to determine funding levels for programs such as the Supplemental
Nutrition Assistance Program (SNAP) and the Women, Infants, and
Children (WIC) clinics, which provide nourishment to low-income women
and children.
To continue support for the agency and its important mission, ASN
recommends an fiscal year 2013 funding level of $162 million for NCHS.
Sustained funding for NCHS can help to ensure uninterrupted collection
of vital health and nutrition statistics, and will help to cover the
costs needed for technology and information security upgrades that are
necessary to replace aging survey infrastructure.
Thank you for your support of the NIH and the NCHS, and thank you
for the opportunity to submit testimony regarding fiscal year 2013
appropriations. Please contact John E. Courtney, Ph.D., Executive
Officer, if ASN may provide further assistance. He can be reached at
9650 Rockville Pike, Bethesda, Maryland 20814 or
[email protected].
______

Prepared Statement of the American Society of Nephrology
executive summary
The American Society of Nephrology (ASN) requests $32 billion in
funding for the National Institutes of Health (NIH) and $2.03 billion
in funding for NIH's National Institute of Diabetes and Digestive and
Kidney Diseases (NIDDK) in the fiscal year 2013 Labor-HHS-Education
appropriations bill.
ASN is dedicated to the study, prevention, and treatment of kidney
disease, and the society respects your leadership and commitment to
both preventing illness and maintaining fiscal responsibility.
Estimates of chronic kidney disease (CKD) in the United States suggest
that it affects more than 26 million, or 1 in 9, Americans, and more
than 550,000 of them have irreversible kidney failure.
Without research funded by NIH broadly and NIDDK specifically,
research leading to advances in the care and treatment of adults and
children afflicted with kidney disease would not be conducted.
For instance, hereditary diseases such as cystinosis--a metabolic
disorder that affects the kidneys, eyes, thyroid, pancreas, and brain--
can now be treated to prevent or delay its worst effects on children.
Although cystinosis is a relatively rare disease, this achievement
highlights that advancing understanding of the genetics of kidney
diseases in children enables us to address a previously untreatable
condition as well as gain significant insight into the mechanisms of
other kidney conditions.
In addition, investigative studies supported by NIH and NIDDK
generated a groundbreaking discovery that helps explain racial/ethnic
disparities that increase risks for kidney disease, which can lead to
earlier detection and treatment. The recent finding that African-
Americans with variant APOL1 genes are at increased risk of kidney
disease is a crucial step in understanding why this sector of our
population is four times more likely to have kidney failure than non-
Hispanic whites.
Funding from NIH and NIDDK also enabled research that could improve
ESRD patients' heart health and physical wellness: patients receiving
daily in-center dialysis had better outcomes compared to conventional
thrice-weekly dialysis. The discovery of these advantages has
significant implications for the future of dialysis care for patients
with end-stage renal disease (ESRD).
A funding increase of 4 percent for NIH and 4.5 percent for NIDDK
would continue the important work that is necessary to move the model
from curative healthcare, where interventions occur late in the natural
history of a disease, to a preemptive model in which the onset of
disease is significantly delayed or even prevented--saving taxpayer
funds and creating a better quality of life for Americans.
ESRD is covered by Medicare regardless of a patient's age or
disability status. Consequently, preventing kidney disease and
advancing the effectiveness of therapies for kidney failure--starting
with innovative research at NIDDK--would have a greater impact at the
highest level of costs within the Centers for Medicare and Medicaid
Services. Perhaps most importantly, in human terms, the applied
research will help prevent greater suffering among those who would
otherwise progress to an even greater level of illness.
Sustained, predictable investment in research is the only way that
scientific investigations can be effective and lead to new discoveries.
With funding from NIH and NIDDK, scientists have been able to pursue
cutting-edge basic, clinical and translational research. While ASN
fully understands the difficult economic environment and the intense
pressure you are under as an elected official to guide America forward
during these tough times, the society firmly believes that funding NIH
at $32 billion and NIDDK at $2.03 billion will continue to create jobs,
support the next generation of investigators, and ultimately improve
public health.
Several recent studies have concluded that Federal support for
medical research is a major force in the economic health of communities
across the Nation.
It is critically important that the Nation continue to capitalize
on previous investments to drive research progress, train the next
generation of scientists, create new jobs, promote economic growth, and
maintain leadership in the global innovation economy--particularly as
other countries increase their investments in scientific research.
Most important, a failure to maintain and strengthen NIH and
NIDDK's ability to support the groundbreaking work of researchers
across the country carries a palpable human toll, denying hope to the
millions of patients awaiting the possibility of a healthier tomorrow.
ASN strongly recommends that the fiscal year 2013 Labor-HHS-
Education appropriations bill uphold its longstanding legacy of
bipartisan support for biomedical research by providing funding of no
less than $32 billion for NIH and $2.03 billion for NIDDK.
Should you have any questions or wish to discuss NIH, NIDDK, or
kidney disease research in more detail, please contact ASN Manager of
Policy and Government Affairs Rachel Shaffer at [email protected].
about asn
The American Society of Nephrology (ASN) is a 501(c)(3) nonprofit,
tax-exempt organization that leads the fight against kidney disease by
educating the society's 13,500 physicians, scientists, and other
healthcare professionals, sharing new knowledge, advancing research,
and advocating the highest quality care for patients. For more
information, visit ASN's website at www.asn-online.org.
______

Prepared Statement of the American Society of Plant Biologists
On behalf of the American Society of Plant Biologists (ASPB) we
would like to thank the Subcommittee for its support of the National
Institutes of Health (NIH). ASPB and its members recognize the
difficult fiscal environment our Nation faces, but believe investments
in scientific research will be a critical step toward economic
recovery. ASPB asks that the Subcommittee Members encourage increased
support for plant biology research within NIH; such research has
contributed in innumerable ways to improving the lives of people
throughout the world.
ASPB is an organization of approximately 5,000 professional plant
biology researchers, educators, graduate students, and postdoctoral
scientists with members in all 50 States and throughout the world. A
strong voice for the global plant science community, our mission--
achieved through work in the realms of research, education, and public
policy--is to promote the growth and development of plant biology, to
encourage and communicate research in plant biology, and to promote the
interests and growth of plant scientists in general.
Plant Biology Research and America's Future
Plants are vital to our very existence. They harvest sunlight,
converting it to chemical energy for food and feed; they take up carbon
dioxide and produce oxygen; and they are the primary producers on which
all life depends. Indeed, plant biology research is making many
fundamental contributions in the areas of domestic fuel security and
environmental stewardship; the continued and sustainable development of
better foods, fabrics, pharmaceuticals, and building materials; and in
the understanding of basic biological principles that underpin
improvements in the health and nutrition of all Americans.
Despite the fact that foundational plant biology research underpins
vital advances in practical applications in health, agriculture,
energy, and the environment, the amount of money invested in
understanding the basic function and mechanisms of plants is relatively
small. This is especially true when considering the significant
positive impact plants have on the Nation's economy and in addressing
some of our most urgent challenges in health and nutrition.
Understanding the importance of these areas and in order to address
future challenges, ASPB organized the Plant Science Research Summit
held in September 2011. With funding from the National Science
Foundation, U.S. Department of Agriculture (USDA), Department of
Energy, and the Howard Hughes Medical Institute, the Summit brought
together representatives from across the full spectrum of plant science
research to identify critical gaps in our understanding of plant
biology that must be filled over the next 10 years or more in order to
address the grand challenges facing our Nation and our planet. The
grand challenges identified at the Summit include:
--To feed everyone well, now and in the future, advances in plant
science research will be needed for higher yielding, more
nutritious crop varieties able to withstand a variable climate.
--Innovations leading to improvements in water use, nutrient use, and
disease and pest resistance that reduce the burden on the
environment are needed and will allow for improved ecosystem
services, such as clean air, clean water, fertile soil, and
biodiversity benefits, such as pest suppression and
pollination.
--To fuel the future with clean energy--and to ensure that our Nation
meets its fuel requirements--improvements are needed in current
biofuels technologies, including breeding, crop production
methods, and processing.
--For all the benefits that advances in plant science bestow, to have
lasting, permanent benefit they must be economically, socially,
and environmentally sustainable.
In spring 2012, a report from the Plant Science Research Summit
will be published. This report will further detail priorities and needs
to address the grand challenges.
Plant Biology and the National Institutes of Health
The mission of the NIH is to pursue ``fundamental knowledge about
the nature and behavior of living systems and the application of that
knowledge to extend healthy life and reduce the burdens of illness and
disability.'' Plant biology research is highly relevant to this
mission.
Plants are often the ideal model systems to advance our
``fundamental knowledge about the nature and behavior of living
systems,'' as they provide the context of multi-cellularity while
affording ease of genetic manipulation, a lesser regulatory burden, and
inexpensive maintenance requirements than the use of animal systems.
Many basic biological components and mechanisms are shared by both
plants and animals. For example, a property known as RNA interference,
which has potential application in the treatment of human disease, was
first noted in plants. Upon further elucidation in other plants and
animals, this research earned two American scientists, Andrew Fire and
Craig Mello, the 2006 Nobel Prize in Physiology or Medicine.
Health and Nutrition.--Plant biology research is also central to
the application of basic knowledge to ``extend healthy life and reduce
the burdens of illness and disability.'' Without good nutrition, there
cannot be good health. Indeed, a World Health Organization study on
childhood nutrition in developing countries concluded that over 50
percent of the deaths of children less than 5 years of age could be
attributed to malnutrition's effects in exacerbating common illnesses
such as respiratory infections and diarrhea. Strikingly, most of these
deaths were not linked to severe malnutrition but only to mild or
moderate nutritional deficiencies. Plant biology researchers are
working today to improve the nutritional content of crop plants by
increasing the availability of nutrients and vitamins such as iron,
vitamin E, and vitamin A.
By contrast, obesity, cardiac disease, and cancer take a striking
toll in the developed world. Research to improve the lipid composition
of plant fats and efforts to optimize concentrations of plant compounds
that are known to have anti-carcinogenic properties, such as the
glucosinolates found in broccoli and cabbage, and the lycopenes found
in tomato will help in addressing these concerns. Ongoing development
of crop varieties with tailored nutraceutical content is an important
contribution that plant biologists are making toward realizing the goal
of personalized medicine, especially personalized preventative
medicine.
Drug Discovery.--Plants are also fundamentally important as sources
of both extant drugs and drug discovery leads. In fact, over 10 percent
of the drugs considered by the World Health Organization to be ``basic
and essential'' are still exclusively obtained from flowering plants. A
recent example of the importance of plant-based pharmaceuticals is the
anti-cancer drug taxol, which was discovered as an anti-carcinogenic
compound from the bark of the Pacific yew tree through collaborative
work involving scientists at the NIH National Cancer Institute and
plant biologists at the USDA. Originally, taxol could only be obtained
from the tree bark itself, but additional research led to the
elucidation of its molecular structure and eventually to its chemical
synthesis in the laboratory. Taxol is just one example of the estimated
200,000 secondary plant compounds that will continue to provide a
fruitful source of new drug leads, particularly if collaborations such
as the one described above can be fostered and funded. With additional
research support from NIH, plant biologists can lead the way to
developing new medicines and biomedical applications to enhance the
treatment of devastating diseases.
Conclusion
The NIH does recognize that plants help serve its mission. However,
because the boundaries of plant biology research are permeable and
because information about plants integrates with many different
disciplines that are highly relevant to NIH, ASPB asks the Subcommittee
to provide direction to NIH to support additional plant biology
research in order to help pioneer new discoveries and new methods in
biomedical research.
Thank you for your consideration of our testimony on behalf of the
American Society of Plant Biologists. For more information about ASPB,
please see www.aspb.org.
______

Prepared Statement of the American Society for Pharmacology &
Experimental Therapeutics
The American Society for Pharmacology and Experimental Therapeutics
(ASPET) is pleased to submit written testimony in support of the
National Institutes of Health (NIH) fiscal year 2013 budget. ASPET is a
5,100 member scientific society whose members conduct basic,
translational, and clinical pharmacological research within the
academic, industrial and government sectors. Our members discover and
develop new medicines and therapeutic agents that fight existing and
emerging diseases, as well as increase our knowledge regarding how
therapeutics affects humans.
ASPET recommends a budget of at least $32 billion for the NIH in
fiscal year 2013. Research funded by the NIH improves public health,
stimulates our economy and improves global competitiveness. Sustained
growth for the NIH should be an urgent national priority. Flat funding
or cuts to the NIH budget will delay advances in medical research,
jeopardizing potential cures, eliminate jobs, and threaten American
leadership and innovation in biomedical research.
A $32 billion budget for the NIH in fiscal year 2013 will provide a
modest 4 percent increase to the agency and help restore NIH to more
sustainable growth. Currently, the NIH cannot begin to fund all the
high quality research that needs to be accomplished. After several
years of flat funding and spending cuts enacted in 2011, the NIH's
funding environment has reached a critical point:
--Adjusted for inflation, the fiscal year 2012 budget and the
President's fiscal year 2013 budget proposal are $4 billion
lower than the peak year of fiscal year 2003;
--The number of research project grants funded by NIH has declined
every year since 2004, and NIH is projected to fund 3,100 fewer
grants in fiscal year 2012-2013 than in fiscal year 2004; and
--Success rates have fallen more than 14 percent in a decade and are
projected to decline further in fiscal year 2012 and fiscal
year 2013.
If flat funding continues or if additional cuts are mandated to the
NIH budget for fiscal year 2013 and beyond, research that improves the
quality of life will be delayed or stopped, and fewer clinical trials
will be conducted. International competitors will continue to gain on
this highly innovative U.S. enterprise, and we will lose a generation
of young scientists who see no prospects for careers in biomedical
research. Flat or reduced funding for NIH will mean that the agency
would have to dramatically reduce new awards and many research projects
in progress would not receive sufficient funding to complete ongoing
work, thus representing a waste of valuable research resources.
An fiscal year 2013 NIH budget of $32 billion would help to begin
to restore momentum to NIH funding. A $32 billion fiscal year 2013 NIH
budget will help the agency manage its research portfolio effectively
without too much disruption of existing grants to researchers
throughout the country. The NIH, and the entire scientific enterprise,
cannot rationally manage boom or bust funding cycles. Scientific
research takes time. Only through steady, sustainable and predictable
funding increases can NIH continue to fund the highest quality
biomedical research to help improve the health of all Americans and
continue to make significant economic impact in many communities across
the country. An fiscal year 2013 NIH budget of $32 billion will help
NIH move to more fully exploit promising areas of biomedical research
and translate the resulting findings into improved healthcare.
Diminished Support for NIH will Negatively Impact Human Health
Diminished funding for NIH will mean a loss of scientific
opportunities to discover new therapeutic targets and will create
disincentives to young scientists to commit to careers in biomedical
science. A difficult Federal funding environment becomes more
problematic as economic difficulties have led to less investment by the
pharmaceutical industry and diminished venture capital needed by the
biotech industry. Previous investments in NIH research have been
instrumental in improving human health. However, a greater investment
in research is needed to help improve the lives of many afflicted by
chronic diseases:
--Parkinson's disease is estimated to afflict over 1 million
Americans at an annual cost of $26 billion. The discovery of
Levodopa was a breakthrough in treating the disease and allows
patients to lead relatively normal, productive lives. It is
estimated that treatments slowing the progress of disease by 10
percent could save the United States $327 million a year.
Current treatments slow progression of the disease, but more
research is needed to identify the causes of the disease and
help to develop better therapies.
--More than 38 million Americans are blind or visually impaired, and
that number will grow with an aging population. Eye disease and
vision loss cost the United States $68 billion annually. NIH
funded research has developed new treatments that delay or
prevent diabetic retinopathy, saving $1.6 billion a year.
Discovery of gene variations in age-related macular
degeneration could result in new screening tests and preventive
therapies.
--One in eight older Americans suffer from Alzheimer's disease at
annual costs of more than $200 billion. It is estimated that by
2050 more than 14 million Americans will live with the disease
with projected costs of $1.1 trillion (in 2012 dollars).
Although there are new clinical candidates for Alzheimer's
disease in development, more basic research is needed to focus
on new molecular targets and potential cures for this disease.
Inadequate funding will delay and prevent improved treatment of
the disease.
--Heart disease and stroke are the number one and three killers of
Americans, respectively. Cardiovascular disease costs the
United States more than $350 billion annually. Death rates from
cardiovascular disease have fallen by 50 percent since 1970.
Statin drugs that reduce cholesterol help to prevent heart
disease and stroke, decrease recurrence of heart attacks and
improve survival rates for heart transplant patients.
--Cancer is the second leading cause of death in the United States.
The NIH estimates that the annual cost of the disease is over
$228 billion. NIH research has shown that human papillomavirus
(HPV) vaccines protect against persistent infection by the two
types of HPV that cause approximately 70 percent of cervical
cancers. NIH funded researchers are using nanotechnology to
develop probes that could pinpoint the location of tumors and
deliver drugs directly to cancer cells. NIH funded basic
research built the foundation for one of the most revolutionary
FDA approved new treatments for melanoma and helped launch the
ear of modern personalized medicine.
--NIH-funded investigators discovered an enzyme that may act as a
tumor suppressor, therapeutic target, and clinical biomarker in
patients with colorectal cancer. Clinical trials are now
underway to study its role as a possible novel chemoprevention
approach to prevent colorectal cancer and determine the utility
of the enzyme as a prognostic and predictive marker for staging
patients with disease. The enzyme is also being used as a
vaccine target to prevent recurrent disease. Studies are
underway evaluating this enzyme's role in regulating appetite
and as a possible novel therapeutic target to prevent obesity,
diabetes, and metabolic syndrome.
--Finding new uses for existing drugs is difficult but could be life
saving and cost effective. NIH-funded researchers using new
bioinformatic approaches have discovered that a drug designed
to treat heartburn also inhibited the growth of human lung
tumors in laboratory mice. Without adequate support for NIH
funding, this type of discovery may become impossible and
potential clinical benefits will not be realized.
--There are almost 7,000 rare diseases, each afflicting fewer than
200,000 individuals. More than 350 drugs have been approved for
rare diseases since passage of the Orphan Drug Act in 1983. The
number of new drugs in development is increasing rapidly as
researchers gain a better understanding of the underlying
molecular and genetic causes of disease. Diminished support for
NIH will prevent new and ongoing investigations into rare
diseases that FDA estimates almost 90 percent are serious or
life-threatening.
NIH-funded studies have also indicated that adopting intensive
lifestyle changes delayed onset of type-2 diabetes by 58 percent, and
that progesterone therapy can reduce premature births by 30 percent in
at-risk women. Historically, our past investment in basic biological
research has led to many innovative medicines. The National Research
Council reported that of the 21 drugs with the highest therapeutic
impact, only 5 were developed without input from the public sector. The
significant past investment in the NIH has provided major gains in our
knowledge of the human genome, resulting in the promise of
pharmacogenomics and a reduction in adverse drug reactions that
currently represent a major worldwide health concern. Already, there
are several examples where complete human genome sequence analysis has
pinpointed disease-causing variants that have led to improved therapy
and cures. Although the costs for such analyses have been reduced
dramatically by technology improvements, widespread use of this
approach will require further improvements in technology that will be
delayed or obstructed with inadequate NIH funding.
Investing in NIH Helps America Compete Economically
A $32 billion budget in fiscal year 2013 will also help the NIH
train the next generation of scientists. This investment will help to
create jobs and promote economic growth. Limiting or cutting the NIH
budget will mean forfeiting future discoveries to other countries.
Worldwide, other nations continue to invest aggressively in
science. China has grown its science portfolio with annual increases to
the research and development budget averaging over 23 percent annually
since 2000. And while Great Britain has imposed strict austerity
measures to address that Nation's debt problems, the British
conservative party had the foresight to keep its strategic investments
in science at current levels. The European Union, despite austerity
measures and the severe debt problems of its member nations, has
proposed to increase spending on research and innovation by 45 percent
between 2014 and 2020.
NIH research funding catalyzes private sector growth. More than 83
percent of NIH funding is awarded to over 3,000 universities, medical
schools, teaching hospitals and other research institutions in every
State. One national study by an economic consulting firm found that
Federal (and State) funded research at the Nation's medical schools and
hospitals supported almost 300,000 jobs and added nearly $45 billion to
the U.S. economy. NIH funding also provides the most significant
scientific innovations of the pharmaceutical and biotechnology
industries.
Inadequate funding for NIH means more than a loss of scientific
potential and discovery. As we have noted, failing to help meet the
NIH's scientific potential has led to a significant reduction in
research grants and the resulting phasing-out of high quality research
programs and jobs lost.
Conclusion
ASPET appreciates the many competing and important spending
decisions the Subcommittee must make. The Nation's deficit and debt
problems are great. However, NIH and the biomedical research enterprise
face a critical moment. The agency's contribution to the Nation's
economic and physical well-being should make it one of the Nation's top
priorities. With enhanced and sustained funding, NIH has the potential
to address many of the more promising scientific opportunities that
currently challenge medicine. A $32 billion fiscal year 2013 NIH budget
will allow the agency to begin moving forward to full program capacity,
exploiting more scientific opportunities for investigation, and
increasing investigator's chances of discoveries that prevent, diagnose
and treat disease. NIH should be restored to its role as a national
treasure, one that attracts and retains the best and brightest to
biomedical research and provides hope to millions of individuals
afflicted with illness and disease.
______

Prepared Statement of the American Society of Tropical Medicine and
Hygiene
The American Society of Tropical Medicine and Hygiene (ASTMH)--the
principal professional membership organization representing, educating,
and supporting scientists, physicians, clinicians, researchers,
epidemiologists, and other health professionals dedicated to the
prevention and control of tropical diseases--appreciates the
opportunity to submit testimony to the Senate Labor, Health and Human
Services, and Education Appropriations Subcommittee.
The benefits of U.S. investment in tropical diseases are both
humanitarian and diplomatic. With this in mind, we respectfully request
that the Subcommittee provide at least $32 billion for the NIH, and
fully fund CDC in the fiscal year 2013 LHHS appropriations bill to
allow them to maintain their current activities and research priorities
to ensure a continued U.S. Government investment in global health and
tropical medicine research and development:
National Institutes of Health
Malaria and neglected tropical disease treatment, control, and
research and development efforts within the National Institute of
Allergy and Infectious Diseases;
An expanded focus on the treatment, control, and research and
development for new tools for diarrheal disease within the NIH;
specifically the inclusion of enteric infections on the Research,
Condition, and Disease Categorization (RCDC) process on the Research
Portfolio Online Reporting Tools (RePORT) website; and
Research capacity development in countries where populations are at
heightened risk for malaria, neglected tropical diseases (NTDs), and
diarrheal diseases through the Fogarty International Center.
The Centers for Disease Control and Prevention
The Center for Global Health, which includes CDC's work in malaria
and NTDs; and
The National Center for Emerging & Zoonotic Infectious Diseases,
which houses the Emerging and Zoonotic Infectious Disease Program and
the Vector-Borne Disease Program that are responsible for protecting
the United States from new and emerging infections.
return on investment of u.s.-funded research
CDC and NIH play essential roles in research and development for
tropical medicine and global health. Both agencies are at the forefront
of the new science that leads to tools to combat malaria and NTDs. This
research provides jobs for American researchers and an opportunity for
the United States to be a leader in the fight against global disease,
in addition to creating lifesaving new drugs and diagnostics to some of
the poorest, most at-risk people in the world.
tropical disease
Most tropical diseases are prevalent in either sub-Saharan Africa,
parts of Asia (including the Indian subcontinent), or Central and South
America. Many of the world's developing nations are located in these
areas; thus, tropical medicine tends to focus on diseases that impact
the world's most impoverished individuals.
Malaria and Parasitic Disease.--Malaria remains a global emergency
affecting mostly poor women and children; it is an acute, sometimes
fatal disease. Despite being treatable and preventable, malaria is one
of the leading causes of death and disease worldwide. Approximately
every 30 seconds, a child dies of malaria--a total of about 800,000
under the age of 5 every year. The World Health Organization estimates
that one-half of the world's people are at risk for malaria and that
there are 108 malaria-endemic countries. Additionally, WHO has
estimated that malaria reduces sub-Saharan Africa's economic growth by
up to 1.3 percent per year.
Neglected Tropical Diseases, also known as Diseases of Poverty.--
NTDs are a group of chronic parasitic diseases, such as hookworm,
elephantiasis, schistosomiasis, and river blindness, which represent
the most common infections of the world's poorest people. These
infections have been revealed as the stealth reason why the ``bottom
billion''--the 1.4 billion poorest people living below the poverty
line--cannot escape poverty, because of the effects of these diseases
on reducing child growth, cognition and intellect, and worker
productivity.
Diarrheal disease.--The child death toll due to diarrheal illnesses
exceeds that of AIDS, tuberculosis, and malaria combined. In poor
countries, diarrheal disease is second only to pneumonia as the cause
of death among children under 5 years old. Every week, 31,000 children
in low-income countries die from diarrheal diseases.
The United States has a long history of leading the fight against
tropical diseases that cause human suffering and pose financial burden
that can negatively impact a country's economic and political
stability. Tropical diseases, many of them neglected for decades,
impact U.S. citizens working or traveling overseas, as well as our
military personnel. Furthermore, some of the agents responsible for
these diseases can be introduced and become established in the United
States (like West Nile virus), or might even be weaponized.
national institutes of health
National Institute of Allergy and Infectious Diseases.--A long-term
investment is critical to achieve the drugs, diagnostics, and research
capacity needed to control malaria and NTDs. NIAID is the lead
institute for malaria and NTD research.
ASTMH encourages the subcommittee to:
--Increase funding for NIH to expand the agency's investment in
malaria, NTDs, and diarrheal disease research and to coordinate
that work with other Government agencies to maximize resources
and ensure development of basic discoveries into usable
solutions;
--Specifically invest in NIAID to support its role at the forefront
of these efforts to developing the next generation of drugs,
vaccines, and other interventions; and
--Urge NIH to include enteric infections and neglected diseases in
its RCDC process on the RePORT website to outline the work that
is being done in these important research areas.
Fogarty International Center (FIC).--Biomedical research has
provided major advances in the treatment and prevention of malaria,
NTDs, and other infectious diseases. These benefits, however, are often
slow to reach the people who need them most. FIC plays a critical role
in strengthening science and public health research institutions in
low-income countries. FIC works to strengthen research capacity in
countries where populations are particularly vulnerable to threats
posed by malaria, NTDs, and other infectious disease. This maximizes
the impact of U.S. investments and is critical to fighting malaria and
other tropical diseases.
ASTMH encourages the subcommittee to:
--Allocate sufficient resources to FIC in fiscal year 2013 to
increase these efforts, particularly as they address the
control and treatment of malaria, NTDs, and diarrheal disease.
the centers for disease control and prevention
Malaria and Parasitic Disease.--Malaria has been eliminated as an
endemic threat in the United States for over 50 years, and CDC remains
on the cutting edge of global efforts to reduce the toll of this deadly
disease. CDC efforts on malaria and parasitic disease fall into three
broad categories: prevention, treatment, and monitoring/evaluation of
efforts. The agency performs a wide range of basic research within
these categories, such as:
--Conducting research on antimalarial drug resistance to inform new
strategies and prevention approaches;
--Assessing new monitoring, evaluation, and surveillance strategies;
--Conducting additional research on malaria vaccines, including field
evaluations; and
--Developing innovative public health strategies for improving access
to antimalarial treatment and delaying the appearance of
antimalarial drug resistance.
ASTMH encourages the subcommittee to:
--Fund a comprehensive approach to effective and efficient malaria
and parasitic disease, including adequately funding the
important contributions of CDC in malaria and parasitic disease
at no less than $18 million.
Neglected Topical Diseases.--CDC currently receives zero dollars
directly for NTD work outside of parasitic diseases; however, this
should be changed to allow for more comprehensive work to be done on
NTDs at the CDC. CDC has a long history of working on NTDs and has
provided much of the science that underlies the global policies and
programs in existence today. This work is important to any global
health initiative, as individuals are often infected with multiple NTDs
simultaneously.
ASTMH encourages the subcommittee to:
--Provide direct funding to CDC to continue its work on NTDs,
including but not limited to parasitic diseases; and
--Urge CDC to continue its monitoring, evaluation, and technical
assistance in these areas as an underpinning of efforts to
control and eliminate these diseases.
Vector-Borne Disease Program (VBDP).--Through the VBDP, researchers
are able to practice essential surveillance and monitoring activities
that protect the United States from deadly infections before they reach
our borders. The world is becoming increasingly smaller as
international travel increases and new pathogens are introduced quickly
into new environments. We have seen this with SARS, avian influenza,
and now, dengue fever, in the United States. Arboviruses like dengue,
and others, such as chikungunya, are a constant threat to travelers,
and to Americans generally.
Dengue fever, a disease with increased risk for Americans as the
weather warms and dengue cases increase, is an example of why it is
imperative that CDC be able to continue its disease monitoring and
surveillance activities to protect the country from new and emerging
threats like dengue and other arboviruses. Dengue fever, a viral
disease transmitted by the Aedes mosquito, recently reemerged as a
threat to Americans, with documented cases in the Florida Keys. Dengue
usually results in fever, headache, and chills, but hemorrhagic dengue
fever can cause severe internal bleeding, loss of blood, and even
death. Because the Aedes mosquito is urban dwelling and often breeds in
areas of poor sanitation, dengue is a serious concern for poor
residents of costal, urban areas in Texas, Louisiana, Mississippi,
Alabama, and Florida.
ASTMH encourages the subcommittee to:
--Ensure that CDC maintain these important activities by continuing
CDC funding for VBDP activities through the National Center for
Emerging and Infectious Zoonotic Diseases.
conclusion
Thank you for your attention to these important United States and
global health matters. We know Congress and the American people face
many challenges in choosing funding priorities, and we hope you will
provide the requested fiscal year 2013 resources to those programs
identified above that meet critical needs for Americans and people
around the world. ASTMH appreciates the opportunity to share its
expertise, and we thank you for your consideration of these requests
that will help improve the lives of Americans and the global poor.
______

Prepared Statement of the American Thoracic Society

SUMMARY: FUNDING RECOMMENDATIONS
[In millions of dollars]
------------------------------------------------------------------------
Amount
------------------------------------------------------------------------
National Institutes of Health.......................... 32,000
National Heart, Lung and Blood Institute........... 3,214
National Institute of Allergy and Infectious 4,701
Disease...........................................
1National Institute of Environmental Health 717.7
Sciences..........................................
Fogarty International Center....................... 72.7
National Institute of Nursing Research............. 151
Centers for Disease Control and Prevention............. 7,800
National Institute for Occupational Safety and 293.6
Health............................................
Asthma Programs.................................... 25.3
Div. of Tuberculosis Elimination................... 243
Office on Smoking and Health....................... 197.1
National Sleep Awareness Roundtable (NSART)........ 1
------------------------------------------------------------------------

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. Founded in 1905, the ATS
is an international education and scientific society of 15,000 members
that focuses on respiratory and critical care medicine. The ATS's
15,000 members help prevent and fight respiratory disease through
research, education, patient care and advocacy.
Lung Disease in America
Diseases of breathing constitute the third leading cause of death
in the United States, responsible for 1 of every 7 deaths. Diseases
affecting the respiratory (breathing) system include chronic
obstructive pulmonary disease (COPD), lung cancer, tuberculosis,
influenza, sleep disordered breathing, pediatric lung disorders,
occupational lung disease, sarcoidosis, asthma, and critical illness.
The death rate due to COPD has doubled within the last 30 years and is
still increasing, while the rates for the other three top causes of
death (heart disease, cancer and stroke) have decreased by over 50
percent. The number of people with asthma in the United States has
surged over 150 percent since 1980 and the root causes of the disease
are still not fully known.
National Institutes of Health
The NIH is the world's leader in groundbreaking biomedical health
research into the prevention, treatment and cure of diseases such as
lung cancer, COPD and tuberculosis. Due to the combination of funding
that has not kept pace with biomedical research and inflation and the
rising costs of doing research, the number of research project grants
supported by the NIH is now at the lowest level since 2001. The success
rate for NIH grants has plummeted to below 13 percent, meaning that
more than 87 percent of meritorious research is not being funded.
Without a funding increase to sustain the research pipeline, the NIH
will be forced to reduce the number of research grants funded, which
will result in the halting of vital research into diseases affecting
millions around the world. We ask the subcommittee to provide $32
billion for the NIH in fiscal year 2013.
Despite the rising lung disease burden, lung disease research is
underfunded. In fiscal year 2011, lung disease research represented
just 23.4 percent of the National Heart, Lung, and Blood Institute's
(NHLBI) budget. Although COPD is the third leading cause of death in
the United States, research funding for the disease is a fraction of
the money invested for the other leading causes of death.
Centers for Disease Control and Prevention
In order to ensure that health promotion and chronic disease
prevention are given top priority in Federal funding, the ATS supports
a funding level for the Centers for Disease Control and Prevention
(CDC) that enables it to carry out its prevention mission, and ensure a
translation of new research into effective State and local public
health programs. We ask that the CDC budget be adjusted to reflect
increased needs in chronic disease prevention, infectious disease
control, including TB control and occupational safety and health
research and training. The ATS recommends a funding level of $7.8
billion for the CDC in fiscal year 2013.
COPD
COPD is the third leading cause of death in the United States and
the third leading cause of death worldwide. CDC estimates that 12
million patients have COPD; an additional 12 million Americans are
unaware that they have this life threatening disease. In 2010, the
estimated economic cost of lung disease in the United States was $186
billion, including $117 billion in direct health expenditures and $69
billion in indirect morbidity and mortality costs.
Despite the growing burden of COPD, the United States does not have
a public health action plan on the disease. The ATS urges Congress to
direct the NHLBI to develop a national action plan on COPD, in
coordination with the Centers for Disease Control and Prevention (CDC)
to expand COPD surveillance, development of public health interventions
and research on the disease and increase public awareness of the
disease. The NHLBI has shown successful leadership in educating the
public about COPD through the COPD Education and Prevention Program.
CDC has an additional role to play in this work. We urge CDC to
include COPD-based questions to future CDC health surveys, including
the National Health and Nutrition Evaluation Survey (NHANES) and the
National Health Information Survey (NHIS).
Tobacco Control
Cigarette smoking is the leading preventable cause of death in the
United States, responsible for 1 in 5 deaths annually. The ATS is
pleased that the Department of Health and Human Services has made
tobacco use prevention a key priority. The CDC's Office of Smoking and
Health coordinates public health efforts to reduce tobacco use. In
order to significantly reduce tobacco use within 5 years, as
recommended by the subcommittee in fiscal year 2010, the ATS recommends
a total funding level of $197 million for the Office of Smoking and
Health in fiscal year 2013.
Pediatric Lung Disease
The ATS is pleased to report that infant death rates for various
lung diseases have declined for the past 10 years. In 2007, of the 10
leading causes of infant mortality, 4 were lung diseases or had a lung
disease component. Many of the precursors of adult respiratory disease
start in childhood. Many children with respiratory illness grow into
adults with COPD. It is estimated that 7.1 million children suffer from
asthma. While some children appear to outgrow their asthma when they
reach adulthood, 75 percent will require life-long treatment and
monitoring of their condition. The ATS encourages the NHLBI to continue
with its research efforts to study lung development and pediatric lung
diseases.
Asthma
Asthma is a significant public health problem in the United States.
Approximately 25 million Americans currently have asthma. In 2009,
3,445 Americans in 2009 died as a result of asthma exacerbations.
Asthma is the third leading cause of hospitalization among children
under the age of 15 and is a leading cause of school absences from
chronic disease. The disease costs our healthcare system over $50.1
billion per year. African-Americans have the highest asthma prevalence
of any racial/ethnic group and the age-adjusted death rate for asthma
in this population is three times the rate in whites.
The President's fiscal year 2013 budget request proposes to merge
the CDC's National Asthma Control Program with the Healthy Homes/Lead
Poisoning Prevention Program and recommends funding cuts to the
combined programs of over 50 percent. The ATS is deeply concerned that
this proposal would drastically reduce States' capacity to implement a
proven public health response to this disease. Asthma public health
interventions are cost effective. A study published in the American
Journal of Respiratory Critical Care recently found that for every
dollar invested in asthma interventions, there was a $36 benefit. We
ask that in your appropriations request for fiscal year 2013 that
funding for CDC's National Asthma Control Program be maintained at a
funding level of at least $25.3 million and that the National Asthma
Control Program remain as a distinct, stand-alone program.
Sleep
Several research studies demonstrate that sleep-disordered
breathing and sleep-related illnesses affect an estimated 50-70 million
Americans. The public health impact of sleep illnesses and sleep
disordered breathing is still being determined, but is known to include
increased mortality, traffic accidents, lost work and school
productivity, cardiovascular disease, obesity, mental health disorders,
and other sleep-related comorbidities. Despite the increased need for
study in this area, research on sleep and sleep-related disorders has
been underfunded. The ATS recommends a funding level of $1 million in
fiscal year 2013 to support activities related to sleep and sleep
disorders at the CDC, including for the National Sleep Awareness
Roundtable (NSART), surveillance activities, and public educational
activities. The ATS also recommends an increase of funding for research
on sleep disorders at the Nation Center for Sleep Disordered Research
(NCSDR) at the NHLBI.
Tuberculosis
Tuberculosis (TB) is the second leading global infectious disease
killer, claiming 1.4 million lives each year. It is estimated that 9-12
million Americans have latent tuberculosis. Drug-resistant TB poses a
particular challenge to domestic TB control due to the high costs of
treatment and intensive healthcare resources required. Treatment costs
for multidrug-resistant (MDR) TB range from $100,000 to $300,000. The
global TB pandemic and spread of drug resistant TB present a persistent
public health threat to the United States.
Despite declining rates, persistent challenges to TB control in the
United States remain. Specifically: (1) racial and ethnic minorities
continue to suffer from TB more than majority populations; (2) foreign-
born persons are adversely impacted; (3) sporadic outbreaks occur,
outstripping local capacity; (4) continued emergence of drug
resistance; and (5) there are critical needs for new diagnostics,
treatment and prevention tools.
The Comprehensive Tuberculosis Elimination Act (CTEA, Public Law
110-392), enacted in 2008, reauthorized programs at CDC with the goal
of putting the United States back on the path to eliminating TB. The
ATS, recommends a funding level of $243 million in fiscal year 2013 for
CDC's Division of TB Elimination, as authorized under the CTEA, and
encourages the NIH to expand efforts to develop new tools to reduce the
rising global TB burden.
Critical Illness
The burden associated with the provision of care to critically ill
patients is enormous, and is anticipated to increase significantly as
the population ages. Approximately 200,000 people in the United States
require hospitalization in an intensive care unit because they develop
a form of pulmonary disease called Acute Lung Injury. Despite the best
available treatments, 75,000 of these individuals die each year from
this disease. To put that in context, that is the approximately the
number of deaths each year due to breast cancer, colon cancer, and
prostate cancer combined. This disease can be triggered by a variety of
causes, including infections, drowning, traumatic accidents, burn
injuries, blood transfusions and inhalation of toxic substances.
Investigation into diagnosis, treatment and outcomes in critically ill
patients should be a high priority, and the NIH should be encouraged
and funded to coordinate investigation related to critical illness in
order to meet this growing national imperative.
Fogarty International Center
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. FIC has created
supplemental TB training grants for these institutions to train
international health professionals in TB treatment and research. The
ATS recommends Congress provide $72.8 million for FIC in fiscal year
2013, to allow expansion of the TB training grant program from a
supplemental grant to an open competition grant.
Researching and Preventing Occupational Lung Disease
The ATS urges the subcommittee to provide at least level funding
for the National Institute for Occupational Safety and Health (NIOSH).
NIOSH, within the Centers for Disease Control and Prevention (CDC), is
the primary Federal agency responsible for conducting research and
making recommendations for the prevention of work-related illness and
injury. NIOSH provides national and world leadership to avert workplace
illness, injury, disability, and death by gathering information,
conducting scientific research, and translating this knowledge into
products and services. NIOSH supports programs in every State to
improve the health and safety of workers.
The ATS appreciates the opportunity to submit this statement to the
subcommittee.
______

Prepared Statement of the American Urogynecologic Society
Founded in 1979, the American Urogynecologic Society (AUGS) is a
professional organization of 1,400 physicians and allied health
professionals who are dedicated to caring for women with pelvic floor
disorders (PFD) that include pelvic organ prolapse, stress urinary
incontinence, and defecatory disorders such as constipation and fecal
incontinence.
As the largest U.S. professional organization dedicated to caring
for women with PFDs, AUGS is committed to advancing this vastly
understudied field as a means to improve the quality of life of women
worldwide. We are pleased to submit testimony to the Appropriations
Subcommittee on Labor, Health and Human Services, Education, and
Related Agencies requesting a greater commitment to biomedical research
focused on female pelvic floor disorders, including incontinence.
Impact of Pelvic Floor Disorders
Female pelvic floor disorders (PFD) represent an under-appreciated,
but major public health burden with high prevalence, impairment of
quality of life, and substantial economic costs. These disorders, which
include urinary and fecal incontinence as well as pelvic organ prolapse
(POP) (pelvic organs protruding outside of the body), affect 25 percent
of women aged 40-59. Women with PFDs suffer from pressure, pain,
embarrassment, and frequently social isolation. However, because PFDs
are rarely fatal and are underreported by those affected, public
attention is sparse. While many of us take bladder and bowel control
for granted, for those that suffer, day-to-day life is not routine.
Prevalence dramatically increases with age; 50 percent of women over 80
suffer from uncontrollable leakage of urine or stool and/or POP. As the
United States population ages, PFDs will become an even greater public
health issue that cannot be ignored.
List of research priorities for PFDs:
--Expand research into understanding what causes some women to suffer
from PFDs, while other women are spared.
--Foster collaborations between clinician scientists, basic
researchers, and translational scientists.
--Facilitate clinical effectiveness studies through the development
of large practice-based networks, registries, or multi-
institutional databases.
Amount requested: $25 million in fiscal year 2013.
Since fiscal year 1999 (14 fiscal years), the National Institute of
Child Health and Human Development (NICHD), National Institute of
Diabetes, Digestive, and Kidney Diseases (NIDDK) and the National
Institute on Aging (NIA) have provided $150 million (or $10.7 million
per annum) to PFD research (NIH Reporter query 4/21/12 [search criteria
= ``pelvic floor'']). This funding has resulted in several important
discoveries and programs, briefly summarized here:
--The prevalence of the most common PFDs is better understood.
(Nygaard, Brown, Bharucha, Guise)
--Using increasingly well-characterized knockout mouse models, the
role of modeling and remodeling of connective tissue
constituents for pelvic floor support has been better
elucidated. (Moalli, Word, Chen, Clark)
--Utilizing magnetic resonance imaging and 3D ultrasound, the
functional (and dysfunctional) anatomy of pelvic floor organ
support by deep pelvic floor muscles is being explored.
(Delancey, Ashton-Miller, Dietz)
--The role of peripheral nerve injury in the function of sphincteric
muscles has been evaluated in rodents, in some nonhuman
primates, and in humans. (Damaser, Wai, Pierce, Kuehl, Weidner)
--Genetic determination of disease expression is currently being
explored in populations of families. (Norton)
--Major NIH-funded networks (the Pelvic Floor Disorders Network and
the Urinary Incontinence Treatment Network) have provided new
insights from well-conceived clinical trials that are being
incorporated into routine practice.
Although these studies have led to important advances in PFD
research, they have also unveiled a wealth of unanswered questions that
only can be addressed with ongoing funded research. Given the potential
for further critical research in this area and the large proportion of
the population affected by these disorders, we respectfully request a
significant increase in funding to $25 million in fiscal year 2013 in
order to build on the work already done. By providing at least $32
billion in funding to the National Institutes of Health in the fiscal
year 2013 Labor-HHS-Education appropriations bill, there would be
enough of an increase to also allow NICHD and NIDDK to appropriately
provide for this requested increase in PFD research, as well.
Further Detail Regarding Research Priorities for PFDS
NICHD, NIDDK and NIA need to expand research into understanding
what causes some women to suffer from PFDs, while other women are
spared.
Rationale.--Unlike many other disease processes, the underlying
causes of PFDs are poorly understood, and thus, our ability to
accurately determine which woman will be affected is rudimentary.
Because of these significant knowledge gaps, efforts to develop
effective preventive strategies and long-term treatment options remain
empiric, rather than based on understanding of the underlying
mechanisms of disease. This, in turn, likely contributes to the lack of
long-term success of existing therapies. For example, women who suffer
from urinary incontinence due to a condition called ``overactive
bladder'' only achieve moderate improvements with currently approved
medications. Furthermore, those that do get relief frequently
discontinue medication because of equally bothersome side effects. An
accurate understanding of disease mechanisms and varied expression of
the disease is critical for advancing prevention strategies and
developing new treatments. Better understanding of treatment failures
will additionally serve to achieve our ultimate goal of improving the
lives of millions of women who suffer from these highly prevalent
disorders.
Research Goal.--Encourage diverse research methodologies such as
biomechanics, bioinformatics, genomics and proteomics, cellular biology
and epidemiology. Below two research initiatives aimed at expanding
research in the pathophysiology and phenotypes of PFDs are briefly
outlined. To achieve this goal AUGS recommends the following:
--Pathophysiology.--Scientific understanding of tissue-specific
abnormalities that underlie female PFDs is in its infancy with
many competing concepts and hypotheses that do not have
unifying themes. It is unclear whether the abnormalities
presently associated with pelvic floor dysfunction are due to
acute or repeated injury, deterioration, or inherent
abnormalities of the structures studied. Investigations are
urgently needed into the mechanisms underlying observed changes
in the skeletal and smooth muscles of the pelvic floor;
autonomic, peripheral and central nervous systems; and the
connective tissues of the pelvic floor.
--Create a multi-center discovery network of expert centers focused
on the pathophysiology of PFD to develop coordinated
research.
--Publish RFAs to fund the required mechanistic research into the
basic causes of the occurrence and progression of PFD.
--Phenotyping.--Accurate disease/disorder categorization is uniformly
critical to high-quality research; however, current knowledge
of various forms of urinary and fecal incontinence and POP is
limited. The process of developing definitions of ``disease/
disorder'' requires the use of epidemiologic, biologic,
molecular and computational methodologies for complex processes
such as PFDs. Therefore AUGS recommends:
--Publish a specific RFA to fund multidisciplinary research on how
to phenotype PFD.
--Once the process has been defined, fund a consortium of centers
focused on multidisciplinary approaches to accurately
phenotype pelvic floor disorders.
NIH Institutes need to foster collaborations between clinician
scientists, basic researchers, and translational scientists.
Rationale.--The Inaugural AUGS Research Summit 2010 recommended a
variety of complex research topics to advance understanding in PFDs,
all of which require multidisciplinary expertise. It is critical to
prioritize enhancing partnerships between clinician scientists and
basic/translational scientists to maximize the bi-directional flow of
research.
Research Goals.--We propose the following near-term action items to
achieve this priority.
--Using the RFA and PA mechanisms, include basic science research in
ongoing and new large collaborative/network trials. This would
allow basic scientists to create a tissue bank and access data
and tissues collected from diverse yet well-characterized
populations. Additionally, research grant requirements could be
redefined so that large clinical studies are required to
include a basic science component. This would encourage
clinicians to think about the mechanisms leading to their
observations and outcomes, and basic scientists to base their
investigations on clinical perspective in their areas of
expertise.
--Develop seed funding mechanisms focused on bringing
multidisciplinary experts together to plan and design studies
in Female Pelvic Medicine and Reconstructive Surgery. Primary
barriers preventing collaborative groups from receiving funding
are the protected time necessary for investigators to plan and
funds for them to generate pilot data together to produce
meaningful proposals.
--Increase ongoing communications between NICHD, NIDDK, NIA and
Office of Research on Women's Health (ORWH) to align their
goals and strategies in Female Pelvic Medicine and
Reconstructive Surgery research. This also includes identifying
scientific officers within these NIH Institutes and ORWH with
specific responsibilities of advocacy for basic science/
multidisciplinary research projects in Female Pelvic Medicine
and Reconstructive Surgery. This organization at the level of
the NIH would better focus research priorities and reduce
redundancy, translating into better use of resources.
NICHD, NIDDK and the Agency for Healthcare Research and Quality
should work together and facilitate clinical effectiveness studies
through the development of large practice-based networks, registries,
or multi-institutional databases.
Rationale.--Finding safe and cost-effective treatments for PFDs is
of the utmost importance; however, the pipeline from bench to bedside
is laborious. Women, in the meantime, continue to suffer from and seek
treatment for PFDs. Research focused on comparative effectiveness,
health behavior, cost-effectiveness and implementation science are
crucial to provide safe, effective care to the many women who suffer
from pelvic floor dysfunction in the immediate term. In order to make
such research possible, it is imperative to develop an infrastructure
that allows the study of treatment effectiveness or how treatments
perform in a more ``real world'' setting. Broader participation in such
efforts would be facilitated by the development of a system to
encourage non-NIH funded investigators to contribute patients to
ongoing multicenter trials or cohort studies. To achieve these goals,
we recommend the following immediate actions:
--Establish evidence-based outcome measures.--Currently, clinical
research is limited by the variability (across studies) in
techniques for measurement of clinically relevant outcomes.
Therefore, uniform evidence-based outcome measures should be
selected or developed to allow cross-study comparisons and
meta-analyses.
--To select and develop this ``bank'' of measures, an
interdisciplinary team should be convened and should
include representatives from traditional Federal funding
and oversight entities, as well as broad representation of
other stakeholders including professional societies, and
patients. The minimum data set proposed by the NIH
Standardization of Terminology for Researchers in Female
Pelvic Floor Disorders (2001) should be revised. The
concept of a clinical outcome measure that balances
improvement in pre-existing symptoms with the development
of new symptoms and complications should be explored.
--A library for clinical measurements in research should be
established, including those that apply to both affected
and unaffected individuals and including minority
populations; such measures must be available in Spanish.
Uniform measures across centers would promote comparisons
of treatment outcomes in various settings and populations.
In addition, this would facilitate the identification of
quality indicators that assess the balance between benefits
and harms.
--Practice-based networks.--The past 10 years has seen substantial
progress with respect to high-quality clinical trials in the
evaluation and treatment of PFDs. This will be crucial to
ensure high quality as well as cost-effective care for our
aging population.
--Develop practice-based networks for clinical research for short
and long-term (5 years or more) outcomes. The challenges
are to engage practicing physicians in research, to
encourage patients to participate in clinical trials, and
to ensure best research practices in this context.
--Develop a web-based comprehensive database for data collection.
Ideally, this database would interface not only with the
central repository, but also with the local medical record.
--Support a national registry for permanent surgical implants used in
POP surgery.--The past decade has seen an unprecedented
increase in the development of new surgical implants, many with
uncertain long-term effects. Indeed, in 2008 the FDA issued a
Public Health Notification and in 2011 a Safety Update
regarding ``serious complications associated with transvaginal
placement of surgical mesh''. Such a registry would allow the
tracking and study of long-term efficacy and safety outcomes as
well as the improved identification of rare adverse events
associated with the use of these implants.
We thank you, Mr. Chairman, and the Subcommittee, for your support
of research regarding Pelvic Floor Disorders and thank you for the
opportunity to share these comments.
______

Prepared Statement of the Animal Welfare Institute
We are grateful to the Animal Welfare Institute (AWI) subcommittee
for this opportunity to offer testimony as you consider budget
priorities for fiscal year 2013. This testimony addresses the National
Institutes of Health (NIH), but does not make any funding requests.
Thanks to the 2009 National Academy of Sciences (NAS) report
``Scientific and Humane Issues in the Use of Random Source Dogs and
Cats in Research'', and to ongoing concern on the part of Congress, the
NIH has begun the process of prohibiting its extramural researchers
from acquiring dogs and cats from random source Class B dealers. The
ban on the acquisition of cats from these dealers will take effect on
October 1, and the ban on the acquisition of dogs is scheduled to take
effect in 2015.
It should be clarified that the NAS report addressed extramural
research funded by NIH, not NIH's internal research endeavors. There
was no need--NIH had ceased using Class B dog and cat dealers in its
own research over 20 years ago, recognizing the problems--both ethical
and scientific--caused by acquiring animals from sources that treat
dogs and cats inhumanely; fail to provide proper veterinary care and
the basic necessities of life such as clean water, food, and shelter;
acquire animals through fraud and deception; and are constantly under
investigation for apparent violations of the Animal Welfare Act. In
fact, in a 2010 article in Science (David Grimm, ``Dog Dealers' Days
May Be Numbered,'' Vol. 327, 26 February 2010, p. 1076-1077), Dr.
Robert Whitney, director of NIH's animal resources program for 20
years, is quoted as saying, ``By using these animals, we risk losing
our credibility with the public. It's an Achilles' heel for research.''
Even so, and even in the face of congressional concern, NIH had
steadfastly refused to hold its outside grant recipients to the same
high standards it was requiring of its intramural researchers. We
commend NIH for taking the NAS report recommendations and Congress'
concerns to heart and moving forward to end its support for the Class B
dealer system.
As a result of the NAS report, ongoing congressional interest,
intensive (and overly expensive) oversight, and evaporating demand for
their dogs and cats, very few of these dealers remain. Of the eight
remaining random source Class B dog and cat dealers, one is still under
a license suspension, one has received an Official Warning/Violation of
Federal Regulations, and three others remain under investigation. Cases
are still pending against two dealers who have given up their licenses;
one of them was indicted on a number of Federal charges, including
conspiracy, aggravated identity theft, mail fraud, and making false
statements to a Federal agency.
However, even with positive steps toward ending the Class B dealer
system as a source of dogs and cats for research, it is too early for
Congress to take its eye off the ball. Until the Pet Safety and
Protection Act is enacted, thus putting a permanent end to the supply
of animals to research through Class B dealers, the potential will
exist for the system to reconstitute itself. In light of this, it is
vital that Congress take every opportunity to underscore its continuing
vigilance on this issue. We therefore respectfully ask the subcommittee
to include the following language in its report:

``The Committee wishes to acknowledge that NIH has made progress in
moving to end the use of Class B random source dealers as suppliers of
dogs and cats to its grant recipients by recently announcing a ban,
effective October 1, 2012, on the acquisition of cats from Class B
random source dealers. The Committee urges NIH to move as expeditiously
as possible to implement the ban on the acquisition of dogs from Class
B random source dealers, preferably before, but certainly no later
than, 2015, and to ensure that the ban covers not only future grant
awards but also those in place at the time the ban goes into effect.
Finally, the Committee requests that NIH provide regular reports to the
Committee on the status of this process.''

Thank you for your consideration of this request.
______

Prepared Statement of the Brain Injury Association of America
Chairman Harkin and Ranking Member Shelby, thank you for the
opportunity to submit this written testimony with regard to the fiscal
year 2013 Labor-HHS-Education appropriations bill. This testimony is on
behalf of the Brain Injury Association of America (BIAA), our national
network of State affiliates, and hundreds of local chapters and support
groups from across the country.
In the civilian population alone every year, more than 1.7 million
people sustain brain injuries from falls, car crashes, assaults and
contact sports. Males are more likely than females to sustain brain
injuries. Children, teens and seniors are at greatest risk.
Recently, we are seeing an increasing number of service members
returning from the conflicts in Iraq and Afghanistan with TBI, which
has been termed one of the signature injuries of the war. Many of these
returning service members are undiagnosed or misdiagnosed and
subsequently they and their families will look to community and local
resources for information to better understand TBI and to obtain vital
support services to facilitate successful reintegration into the
community.
For the past 13 years Congress has provided minimal funding through
the HRSA Federal TBI Program to assist States in developing services
and systems to help individuals with a range of service and family
support needs following their loved one's brain injury. Similarly, the
grants to State Protection and Advocacy Systems to assist individuals
with traumatic brain injuries in accessing services through education,
legal and advocacy remedies are woefully underfunded. Rehabilitation,
community support and long-term care systems are still developing in
many States, while stretched to capacity in others. Additional numbers
of individuals with TBI as the result of war-related injuries only adds
more stress to these inadequately funded systems.
BIAA respectfully urges you to provide States with the resources
they need to address both the civilian and military populations who
look to them for much needed support in order to live and work in their
communities.
With broader regard to all of the programs authorized through the
TBI Act, BIAA specifically requests:
--$10 million (+$4 million) for the Centers for Disease Control and
Prevention TBI Registries and Surveillance, Brain Injury Acute
Care Guidelines, Prevention and National Public Education/
Awareness;
--$8 million (+$1 million) for the Health Resources and Services
Administration (HRSA) Federal TBI State Grant Program; and
--$4 million (+$1 million) for the HRSA Federal TBI Protection &
Advocacy (P&A) Systems Grant Program.
CDC--National Injury Center.--The Centers for Disease Control and
Prevention's National Injury Center is responsible for assessing the
incidence and prevalence of TBI in the United States. The CDC estimates
that 1.7 million TBIs occur each year and 3.4 million Americans live
with a life-long disability as a result of TBI. In addition, the TBI
Act as amended in 2008 requires the CDC to coordinate with the
Departments of Defense and Veterans Affairs to include the number of
TBIs occurring in the military. This coordination will likely increase
CDC's estimate of the number of Americans sustaining TBI and living
with the consequences.
CDC also funds States for TBI registries, creates and disseminates
public and professional educational materials, for families, caregivers
and medical personnel, and has recently collaborated with the National
Football League and National Hockey League to improve awareness of the
incidence of concussion in sports. CDC plays a leading role in helping
standardize evidence based guidelines for the management of TBI and $1
million of this request would go to fund CDC's work in this area.
HRSA TBI State Grant Program.--The TBI Act authorizes the HHS,
Health Resources and Service Administration (HRSA) to award grants to
(1) States, American Indian Consortia and territories to improve access
to service delivery and to (2) State Protection and Advocacy (P&A)
Systems to expand advocacy services to include individuals with
traumatic brain injury. For the past 13 years the HRSA Federal TBI
State Grant Program has supported State efforts to address the needs of
persons with brain injury and their families and to expand and improve
services to underserved and unserved populations including children and
youth; veterans and returning troops; and individuals with co-occurring
conditions
In fiscal year 2009, HRSA reduced the number of State grant awards
to 15, in order to increase each monetary award from $118,000 to
$250,000. This means that many States that had participated in the
program in past years have now been forced to close down their
operations, leaving many unable to access brain injury care.
Increasing the program to $8 million will provide funding necessary
to sustain the grants for the 21 States currently receiving funding
along with the 3 additional States added this year and to ensure
funding for 4 additional States. Steady increases over 5 years for this
program will provide for each State including the District of Columbia
and the American Indian Consortium and territories to sustain and
expand State service delivery; and to expand the use of the grant funds
to pay for such services as Information & Referral (I&R), systems
coordination and other necessary services and supports identified by
the State.
HRSA TBI P&A Program.--Similarly, the HRSA TBI P&A Program
currently provides funding to all State P&A systems for purposes of
protecting the legal and human rights of individuals with TBI. State
P&As provide a wide range of activities including training in self-
advocacy, outreach, information and referral and legal assistance to
people residing in nursing homes, to returning military seeking
veterans benefits, and students who need educational services.
Effective Protection and Advocacy services for people with
traumatic brain injury is needed to help reduce Government expenditures
and increase productivity, independence and community integration.
However, advocates must possess specialized skills, and their work is
often time-intensive. A $4 million appropriation would ensure that each
P&A can move toward providing a significant PATBI program with
appropriate staff time and expertise.
NIDRR TBI Model Systems of Care.--Funding for the TBI Model Systems
in the Department of Education is urgently needed to ensure that the
Nation's valuable TBI research capacity is not diminished, and to
maintain and build upon the 16 TBI Model Systems research centers
around the country.
The TBI Model Systems of Care program represents an already
existing vital national network of expertise and research in the field
of TBI, and weakening this program would have resounding effects on
both military and civilian populations. The TBI Model Systems are the
only source of non-proprietary longitudinal data on what happens to
people with brain injury. They are a key source of evidence-based
medicine, and serve as a ``proving ground'' for future researchers.
In order to make this program more comprehensive, Congress should
provide $11 million (+$1.5 million) in fiscal year 2012 for NIDRR's TBI
Model Systems of Care program, in order to add one new Collaborative
Research Project. In addition, given the national importance of this
research program, the TBI Model Systems of Care should receive ``line-
item'' status within the broader NIDRR budget.
We ask that you consider favorably these requests for the CDC, the
HRSA Federal TBI Program, and the NIDRR TBI Model Systems Program to
further data collection, increase public awareness, improve medical
care, assist states in coordinating services, protect the rights of
persons with TBI, and bolster vital research.
______

Prepared Statement of the Communities Advocating Emergency AIDS Relief
(CAEAR) Coalition
On behalf of the tens of thousands of individuals living with HIV/
AIDS to whom members of the Communities Advocating Emergency AIDS
Relief (CAEAR) Coalition provide care, I thank Chairman Harkin and
Ranking Member Shelby for affording us the opportunity to submit
testimony regarding increased funding for the Ryan White HIV/AIDS
Program.
The Communities Advocating Emergency AIDS Relief (CAEAR) Coalition
is a national membership organization which advocates for sound Federal
policy, program regulations, and sufficient appropriations to meet the
care, treatment, support service and prevention/wellness needs of
people living with HIV/AIDS and the organizations that serve them,
focusing on ensuring access to high quality healthcare and the evolving
role of the Ryan White Program.
A Wise Investment in a Program That Works
The Ryan White Program works. In its Program Assessment Rating Tool
(PART), the White House Office of Management and Budget (OMB) gave the
Ryan White Program its highest possible rating of ``effective''--a
distinction shared by only 18 percent of all programs rated. According
to OMB, effective programs ``set ambitious goals, achieve results, are
well-managed and improve efficiency.'' Even more impressively, OMB's
assessment of the Ryan White Program found it to be in the top 1
percent of all Federal programs in the area of ``Program Results and
Accountability.'' Out of the 1,016 Federal programs rated--98 percent
of all Federal programs--the Ryan White Program was 1 of 7 that
received a score of 100 percent in ``Program Results and
Accountability.''
The Ryan White Program serves as the indispensable safety net for
thousands of low-income, uninsured or underinsured people living with
HIV/AIDS.
--Part A provides much-needed funding to the 52 major metropolitan
areas hardest hit by the HIV/AIDS epidemic with severe needs
for additional resources to serve those living with HIV disease
in their communities.
--Part B assists States and territories in improving the quality,
availability, and organization of healthcare and support
services for individuals and families with HIV.
--The AIDS Drug Assistance Program (ADAP) in Part B provides life-
saving, urgently needed medications to people living with HIV/
AIDS in all 50 States and the territories.
--Part C provides grants to 345 faith- and community-based primary
care health clinics and public health providers in 49 States,
Puerto Rico and the District of Columbia. These clinics play a
central role in the delivery of HIV-related medical services to
underserved communities, people of color, and rural areas where
Part C funded clinics provide the only HIV specific medical
services available in the region.
--Part F AETC supports training for healthcare providers to identify,
counsel, diagnose, treat, and manage individuals with HIV
infection and to help prevent high-risk behaviors that lead to
infection. It has 130 program sites with coverage in all 50
States.
CAEAR Coalition's fiscal year 2013 funding requests for Part A,
Part B base and ADAP, and Part C reflect the amounts authorized by
Congress in the most recent authorization of the program.
There continues to be an increasing gap between the number of
people living with HIV/AIDS in the United States in need of care and
the Federal resources available to serve them. Between 2001 and 2009
the number of people living with AIDS grew 44 percent and yet funding
for medical care and support services in communities with the greatest
burden of HIV disease grew less than 12 percent between 2001 and 2011.
Similarly, funding for Part C--funded, faith and community-based
primary care clinics, which provide medical care for people living with
HIV/AIDS in remote, rural and geographically isolated, urban
communities nationwide, grew by only 11 percent between 2001 and 2012
as the number of people they care for grew by 52 percent. The
authorized amounts we request would not fully address these funding
deficiencies, but would begin to reduce the still growing gaps in
funding.
We thank you in advance for your consideration of our comments and
our request for:
--$789.5 million for Part A to support grants to the cities where
most people with HIV/AIDS live and receive their care and
treatment.
--$502.9 million for Part B base to provide additional needed
resources to the States to bolster the public health response
statewide regardless of location.
--$1,123.3 million in funding for the ADAP line item in Part B so
uninsured and underinsured people with HIV/AIDS can access the
anti-HIV and other prescribed medications they need to survive.
--$285.8 million for Part C to support grants to faith- and
community-based organizations, healthcare agencies, and
clinics.
--$42.2 million to fund the 11 regional centers funded under by Part
F AETC to offer specialized clinical education and consultation
to frontline providers.
Sufficient Funding for Ryan White Programs Saves Money and Saves Lives
Increased funding for Ryan White Programs will reap a significant
health return for minimal investment. Data show that Part A and Part C
programs have reduced HIV-related hospital admissions by 30 percent
nationally and by up to 75 percent in some locations. The programs
supported by the Ryan White HIV/AIDS Program also have been critical in
reducing AIDS mortality by 70 percent. The Ryan White Program works,
resulting in both economic stimulus and social savings by helping keep
people, stable, healthy and productive.
Growing Needs as More Tested and Entering Care
The Centers for Disease Control and Prevention (CDC) estimates that
as of 2008 there were 1,178,350 persons living with HIV/AIDS in the
United States. This represents an increase of approximately 7 percent
from the previous estimate in 2006. Among persons initially diagnosed
with HIV infection during 2008, one-third (33 percent) received an AIDS
diagnosis within 12 months. These late diagnoses represent missed
opportunities for treatment and prevention.
The fiscal year 2013 appropriation presents a crucial opportunity
to provide the Ryan White Program with the levels of funding needed to
address a growing epidemic in young men, as the CDC continues to
increase efforts to expand HIV testing so people living with HIV know
their status, control their health, and protect others.
CAEAR Coalition supports efforts to help individuals infected with
HIV learn their status at the earliest possible time. However, CAEAR
Coalition is concerned about the unmet demand for services created by
insufficient resources at the Federal level. Researchers estimate that
CDC's expanded HIV testing guidelines will bring an additional 46,000
people into care over 5 years and significantly reduce the 20 percent
of people living with HIV who do not know they are infected and
therefore are not in care. Bringing these individuals into care will
save large sums of money in the long run, but requires an initial
investment now. Research clearly shows that averting a single HIV
infection saves $221,365 in lifetime healthcare costs \1\, and getting
people on anti-HIV treatment early lowers levels of HIV circulating in
the body and reduces potential transmissions \2\--saving lives and
money in the long term--but we must invest now in care and treatment to
reap those rewards. Caring for individuals early in their disease will
increase the cost of care by $2.7 billion over 5 years and the majority
of those costs will fall to Federal discretionary programs like the
Ryan White Program and will not be offset by entitlement programs.\3\
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\1\ Holtgrave DR, Briddell K, Little E, Bendixen AV, Hooper M,
Kidder DP, et al. Cost and threshold analysis of housing as an HIV
prevention intervention. AIDS & Behavior.(2007)11(Suppl 2), S162-S166.
\2\ Montaner J, Lima VD, Barrios R, et al. Association of highly
active antiretroviral therapy coverage, population viral load, and
yearly new HIV diagnoses in British Columbia, Canada: a population-
based study. The Lancet (2010) 376(9740): 532-539.
\3\ Martin EG, Paltiel AD, Walensky, RP, Schackman BR, Expanded HIV
Screening in the United States: What Will It Cost Government
Discretionary and Entitlement Programs? A Budget Impact Analysis. Value
in Health (2010) 13: 893--902.
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Community-based providers are stretched to provide high-quality
care with the scarce resources available. CAEAR Coalition is concerned
that many HIV expert medical staff are scheduled to retire and the
persistent financial pressures may accelerate the loss of trained
professionals in the field. This additional pressure on an already
overburdened system will leave many of the more than 200,000 HIV-
infected individuals who do not know their HIV status without access to
the care they need.
State budget cuts have created a continuing and growing ADAP
funding crisis as a record number of people are in need of ADAP
services due to the economic downturn. As of April 2012, there are
3,079 people on ADAP waiting lists in 10 States. Additionally, ADAP
waiting lists and other cost-containment measures, including limited
formularies, reducing eligibility, or removing already enrolled people
from the program, are clear evidence that the need for HIV-related
medications continues to outstrip availability. ADAPs are forced to
make difficult trade-offs between serving a greater number of people
living with HIV/AIDS with fewer services or serving fewer people with
more services. Additional resources are needed to reduce and prevent
further use of cost-containment measures to limit access to ADAPs and
to allow all State ADAPs to provide a full range of HIV antiretrovirals
and treatment for opportunistic infections.
The number of clients entering the 349 Part C community health
centers and outpatient clinics has consistently increased over the last
5 years. Over 255,000 unduplicated persons living with HIV/AIDS receive
medical care in Part C-funded community health centers and clinics each
year. These faith- and community-based HIV/AIDS providers are
staggering under the burden of treatment and care after years of
funding cuts prior to the modest increase in recent years. The success
of the CDC's routine HIV testing recommendations has generated new
clients for Part C-funded health centers and clinics too, but
unfortunately with no increase in funding to provide the high quality
healthcare services and treatment access people with HIV/AIDS require.
Ryan White-Funded Programs are Economic Engines in their Communities
Ryan White-funded programs, including many community health
centers, are small businesses providing jobs, vendor contracts and
other types of economic development to low-income, urban and rural
communities, frequently serving as anchors for existing and new
businesses and investments. These organizations employ people in their
communities, providing critical entry-level jobs, community-based
training and career building.
For example, a large, urban community health center brings an
estimated economic impact of $21.6 million, employing 281 people, and a
small, rural health center has an estimated economic impact of $3.9
million, employing 52 people. Investing in AIDS care and treatment is
an investment in jobs and community development in communities that
need it most.
Ryan White Program Key to Meeting the Goals of the National HIV/AIDS
Strategy
CAEAR Coalition is eager to work with Congress to meet the
challenges posed by the HIV/AIDS epidemic. In 2013, we have the
collective chance to implement the community-embraced healthcare goals
and policies in the National HIV/AIDS Strategy (NHAS). The National
Strategy is an opportunity to reinvigorate the Nation's response to the
HIV/AIDS epidemic and stop its relentless movement into our
communities. The Ryan White HIV/AIDS Program is key to reaching the
NHAS goals of reducing new HIV infections, increasing access to care
and improving health outcomes for people living with HIV/AIDS, and
reducing HIV-related health disparities. Ryan White provides HIV/AIDS
care and treatment services to a significantly higher proportion of
racial/ethnic minorities and women than their representation among
reported AIDS cases--suggesting the programs and resources are targeted
to underserved and marginalized populations. Early care and treatment
are more critical than ever because we can help those infected learn
their status and get into care and treatment in order to improve their
own health and the health of their communities.
The Ryan White Program's history of accomplishments for public
health and people living with HIV/AIDS is a wonderful legacy for the
U.S. Congress. There continues to be a vast need for additional
resources to address the healthcare and treatment needs of people
living with HIV across the country. In recognition of its high level of
effectiveness and validation over time from credible Federal Government
institutions, CAEAR urges the committee to provide the Ryan White HIV/
AIDS Program with the funding levels authorized by Congress for fiscal
year 2013.
______

Prepared Statement of the Council of Academic Family Medicine
fiscal year 2013 funding requests
Concerning.--Health Resources and Services Administration (HRSA),
Title VII Primary Care Training and Enhancement (Section 747 of Public
Health Service Act (PHS)), Title VII, Sections 749A and B, the Teaching
Health Center Development Grants and the Rural Physician Training
Grants, the Agency for Healthcare Research and Quality (AHRQ) and its
Primary Care Extension Program, and the National Health Workforce
Commission.
The member organizations of the Council of Academic Family Medicine
(CAFM) are pleased to submit testimony on behalf of programs under the
jurisdiction of the Health Resources and Services Administration (HRSA)
and the Agency for Healthcare Research and Quality (AHRQ). The programs
we support in our testimony are ones that deliver an investment in our
Nation's workforce and health infrastructure. They are a down payment
on a U.S. healthcare system with a foundation of primary care that will
produce better health outcomes and reduce the ever rising costs of
healthcare. We understand that hard decisions must be made in these
difficult fiscal times, but even in this climate we hope the Committee
will recognize that the production of a robust primary care workforce
for the future is a necessary investment that cannot wait.
Members of both parties agree there is much that must be done to
support primary care provider production and to nourish the development
of a high quality, highly effective primary care workforce to serve as
a foundation for our healthcare system. Providing strong funding for
these programs is essential to the development of a robust workforce
needed to provide this foundation.
We urge the Committee to appropriate at least $71 million for the
health professions program, Primary Care Training and Enhancement,
authorized under Title VII, Section 747 of the Public Health Service
Act in order to allow for a new competitive cycle for physician primary
care training grants.
Primary Care Training and Enhancement
The Primary Care Training and Enhancement Program (Title VII,
Section 747 of the Public Health Service Act) has a long history of
providing indispensible funding for the training of primary care
physicians. With each successive reauthorization, Congress has modified
the Title VII health professions programs to address relevant workforce
needs. The most recent authorization directs the Health Resources and
Services Administration (HRSA) to prioritize training in the new
competencies relevant to providing care in the patient-centered medical
home model. It also calls for the development of infrastructure within
primary care departments for the improvement of clinical care and
research critical to primary care delivery, as well as innovations in
team management of chronic disease, integrated models of care, and
transitioning between healthcare settings.
We urge you to support at least a $71 million appropriation for the
Primary Care Training and Enhancement program funded through the Labor-
HHS-Education appropriations bill. This funding level is necessary to
permit a competitive grant cycle for physician primary care training
grants. Without additional funding, this will be the second year in a
row there are insufficient funds to conduct a grant cycle. In a time of
increasing primary care need, we urge you to recognize the importance
of maintaining and expanding the pipeline of primary care production
and training. Funding for primary care training is an investment in the
future restraint of healthcare spending, as well as in improved health
outcomes.
Level funding for primary care training is not enough. With the
allocation of 15 percent of the appropriations of the Primary Care
Training and Enhancement program line for physician assistant training,
Congress has taken steps to alleviate the shortfall in physician
assistant training. However, not funding a competitive cycle for
physicians stifles opportunities for inter-professional, team-based
training. The Nation needs new initiatives relating to increased
training in inter-professional care, the patient-centered medical home,
and other new competencies required in our developing health system.
Such initiatives will be impossible to implement without a competitive
grant cycle. Now is the time to ensure that critical funding for the
Primary Care Training and Enhancement program takes place. We cannot
allow the primary care pipeline to dry up.
Key advisory bodies such as the Institute of Medicine (IOM) and the
Congressional Research Service (CRS) have also called for increased
funding. The IOM (December 2008) pointed to the drastic decline in
Title VII funding and described these health professions workforce
training programs as ``an undervalued asset.'' The CRS found that
reduced funding to the primary care cluster has negatively affected the
programs during a time when more primary care is needed (February
2008).
According to the Robert Graham Center, (Title VII's decline:
Shrinking investment in the primary care training pipeline, Oct. 2009),
``the number of graduating U.S. allopathic medical students choosing
primary care declined steadily over the past decade, and the proportion
of minorities within this workforce remains low.'' Unfortunately, this
decline coincides with a decline in primary care training funding--
funding that we know is associated with increased primary care
physician production and practice in underserved areas. The report goes
on to say that ``the Nation needs renewed or enhanced investment in
programs like Title VII that support the production of primary care
physicians and their placement in underserved areas.''
A recent study in the Annals of Family Medicine (Phillips and
Turner, March/April 2012) stated that ``Meeting this increased demand
[for primary care physician production] requires a major investment in
primary care training.'' The study continues, ``Expansion of Title VII,
Section 747 with the goal of improving access to primary care would be
an important part of a needed, broader effort to counter the decline of
primary care. Failure to launch such a national primary care workforce
revitalization program will put the health and economic viability of
our Nation at risk.''
Title VII has a profound impact on States across the country and is
vital to the continued development of a workforce designed to care for
the most vulnerable populations and meet the needs of the 21st century.
The evidence is clear:
--Demonstration projects and international experiences that
preferentially invest in primary care can reduce spending,
particularly for inpatient and emergency department care
(Health Affairs, March-April 2009).
--``There is compelling evidence that healthcare outcomes and costs
in the United States are strongly linked to the availability of
primary care physicians. For each incremental primary care
physician (PCP), there is 1.44 fewer deaths per 10,000 persons.
Patients with a regular primary care physician have lower
overall healthcare costs than those without one.'' (Council on
Graduate Medical Education (COGME) December, 2010)
--Hospital readmission after discharge is often a costly failing of
the U.S. healthcare system to adequately manage patients who
are ill. Increasing the number of family physicians (FPs) is
associated with significant reductions in hospital readmissions
and substantial cost savings. (Robert Graham Center, 2011)
Agency for Health Care Research and Quality (AHRQ)
As mentioned above, the overall health of a population is directly
linked to the strength of its primary healthcare system. Primary care
research includes: translating science into the practice of medicine
and caring for patients, understanding how to better organize
healthcare to meet patient and population needs, evaluating innovations
to provide the best healthcare to patients, and engaging patients,
communities, and practices to improve health.
Research related to the most common acute, chronic, and comorbid
conditions that primary care clinicians care for on a daily basis is
lacking. AHRQ supports research to improve healthcare quality, reduce
costs, advance patient safety, decrease medical errors, and broaden
access to essential services. This research is key to helping create a
robust primary care system for our Nation--one that delivers higher
quality of care and better health while reducing the rising cost of
care. Despite this need, little is known about how patients can best
decide how and when to seek care, introduce and disseminate new
discoveries into real life practice, and how to maximize appropriate
care. And yet, the majority of research funding supports research of
one specific disease, organ system, cellular, or chemical process--not
for primary care.
One cogent example of how AHRQ funded research is making a
difference in primary care practices is a study on ``Care Coordination
Accountability Measures for Primary Care Practice,'' published in
January, 2012. This report builds on earlier work and presents measures
``that are well suited for use by health plans and insurers to assess
the quality of coordination in primary care practices and by primary
care practices themselves to assess their own performance.'' This type
of research requires sufficient funding for AHRQ so it can help
researchers address the problems confronting our health system today.
We recommend the Committee fund AHRQ at a base, discretionary level
of at least $400 million for fiscal year 2013.
Primary Care Extension Program
The Primary Care Extension Program was modeled after the successful
United States Agriculture Extension Service. This program, under Title
III of the Public Health Service Act, is designed to support and assist
primary care providers with the adoption and incorporation of
techniques to improve community health. As the authors of an article
describing this concept (JAMA, June 24, 2009) have stated, ``To
successfully redesign practices requires knowledge transfer,
performance feedback, facilitation, and HIT support provided by
individuals with whom practices have established relationships over
time. The farming community learned these principles a century ago.
Primary care practices are like small farms of that era, which were
geographically dispersed, poorly resourced for change, and inefficient
in adopting new techniques or technology, but vital to the Nation's
well-being.''
Congress agreed with the authors that ``practicing physicians need
something similar to the agricultural extension agent who was so
transformative for farming,'' and authorized this program at $120
million for fiscal year 2011 and 2012.
We recommend the Committee fund the Primary Care Extension program
at the authorized level of $120 million for fiscal year 2013.
Rural Physician Training Grants
``Rural Physician Training Grants,'' Title VII Section 749B of the
Public Health Service Act, were developed to increase the supply of
rural physicians by authorizing grants to medical schools which
establish or expand rural training. The program would provide grants to
produce rural physicians of all specialties. It would help medical
schools recruit students most likely to practice medicine in
underserved rural communities, provide rural-focused training and
experience, and increase the number of medical graduates who practice
in underserved rural communities.
According to a July 2007 report of the Robert Graham Center
(Medical school expansion: An immediate opportunity to meet rural
healthcare needs), data show that although 21 percent of the U.S.
population lives in rural areas, only 10 percent of physicians practice
there. The Graham Center study describes the educational pipeline to
rural medical practice as ``long and complex.'' There are multiple
tactics needed to reverse this situation, and this grant program
includes several of them. Strategies to increase the number of
physicians practicing in rural areas include ``increasing the number of
rural-background students in medical school, selecting the ``right''
students and giving them the ``right'' content and experiences to train
them for rural practice.'' This is exactly what this grant program is
designed to do.
We request the Committee provide the fully authorized amount of $4
million in fiscal year 2013 for Title VII Section 749B Rural Physician
Training Grants.
Teaching Health Centers
Teaching Health Centers (THC) are community health centers or other
similar venues that sponsor residency programs and provide residents
with their ambulatory training experiences in the health center. This
training in the community, rather than solely at the hospital bedside
is one of the hallmarks of family medicine training. However, payment
issues have always caused a tension and struggle between the hospital,
which currently receives reimbursement for residents it sponsors when
they train in the hospital, and programs that require training in non-
hospital settings.
We are pleased that THC's operations are currently funded through a
mandatory appropriations trust fund of $230 million over 5 years, and
it is essential that these important centers continue to be funded
through this mandatory appropriation.
Teaching Health Center Development Grants
This program is designed to provide residency programs and
community health centers grant funding to plan for a transition in
sponsorship, or the establishment of new programs. In the first year of
the program there were already 11 community-based entities from States
across the country that committed to train 44 additional primary care
residents: the second year of the program brought 11 additional
grantees into the program, expanding both the scope of specialties
trained and increasing the number of full-time equivalent residents
trained to 143. This demonstration of early success of the program
should not go unnoticed or unsupported. The limiting factor to the
program is not the operating funds, but the ability of residencies to
plan for the change in their sponsorship. Funding Teaching Health
Center Development Grants will help fulfill the promise of these
innovative programs.
We recommend the Committee appropriate the full authorized amount
for the Title VII Teaching Health Centers development grants of at
least $10 million for fiscal year 2013.
Workforce Commission
We have recognized the need, and called for a national commission
on health workforce issues for many years. We appreciate the work of
this Committee in funding the National Workforce Commission at $3
million for fiscal year 2012 and were disappointed the final bill
didn't contain funding for the Commission.
We ask the Committee to continue to recommend $3 million for the
National Workforce Commission at $3 million for fiscal year 2013.
______

Prepared Statement of the Centers for Disease Control and Prevention
Coalition
The CDC Coalition (c/o American Public Health Association) is a
nonpartisan coalition of more than 140 organizations committed to
strengthening our Nation's prevention programs. Our mission is to
ensure 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 critical 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, clinicians,
researchers, educators, and citizens served by CDC programs.
The CDC Coalition believes that Congress should support CDC as an
agency--not just the individual programs that it funds. In the best
judgment of the CDC Coalition--given the challenges and burdens of
chronic disease, a potential influenza pandemic, terrorism, disaster
preparedness, new and reemerging infectious diseases and our many unmet
public health needs and missed prevention opportunities--we believe the
agency will require funding of at least $7.8 billion for CDC's programs
in fiscal year 2013. We are deeply disappointed with the proposed $664
million cut to CDC's budget authority contained in the President's
fiscal year 2013 budget proposal. In fact, when including the
President's fiscal year 2013 request, CDC's budget authority would have
been decreased by a staggering $1.4 billion since fiscal year 2010.
While CDC has received and the President's fiscal year 2013 budget
proposal directs significant funding from the Prevention and Public
Health Fund to CDC, we believe this funding is essentially supplanting
cuts made to CDC's budget authority. As you know, the Prevention and
Public Health Fund was intended to supplement and not supplant the base
funding of our public health agencies and programs. We urge you to
restore this cut to CDC's budget authority and to support the $1
billion available through Prevention and Public Health Fund in fiscal
year 2013.
By translating research findings into effective intervention
efforts, CDC 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 serves as the command center for our Nation's public health
defense system, conducting surveillance and detection of emerging and
reemerging infectious diseases. With the potential onset of a worldwide
influenza pandemic, in addition to the many other natural and man-made
threats that exist in the modern world, the CDC has become the
Nation's--and the world's--expert resource and response center,
coordinating communications and action and serving as the laboratory
reference center.
CDC serves as the lead agency for bioterrorism and other public
health emergency preparedness and must receive sustained support for
its preparedness programs in order for our Nation to meet future
challenges. Given the challenges of terrorism and disaster
preparedness, and our many unmet public health needs and missed
prevention opportunities we urge you to provide adequate funding for
State and local capacity grants.
Heart disease remains the Nation's No. 1 killer. In 2009, over
599,000 people in the United States died from heart disease, accounting
for nearly 25 percent of all U.S. deaths. More women than men die of
heart disease and stroke each year, and in 2009, females had higher
rates of stroke mortality than males. Stroke is the fourth leading
cause of death and is a leading cause of disability. In 2009, stroke
killed almost 129,000 people (60 percent of them women), accounting for
about 1 of every 19 deaths.
Cancer is the second most common cause of death in the United
States. There are 1,638,910 new cancer cases and 577,190 deaths from
cancer expected in 2012. The financial cost of cancer is also
significant. According to the National Institutes of Health, in 2007
the overall cost for cancer in the United States was more than $226.8
billion: $103.8 billion for direct medical costs, $123 billion for
indirect mortality costs (cost of lost productivity due to premature
death). Among the ways CDC is fighting cancer, is through funding the
National Breast and Cervical Cancer Early Detection Program that helps
low-income, uninsured and medically underserved women gain access to
lifesaving breast and cervical cancer screenings and provides a gateway
to treatment upon diagnosis. CDC also funds grants to all 50 States to
develop Comprehensive Cancer Control plans, bringing together a broad
partnership of public and private stakeholders to set joint priorities
and implement specific cancer prevention and control activities
customized to address each State's particular needs.
Although more than 25.8 million Americans have diabetes, nearly 7
million cases are undiagnosed. In 2010, about 1.9 million people aged
20 years or older were newly diagnosed with diabetes. Diabetes is the
leading cause of kidney failure, nontraumatic lower-limb amputations,
and new cases of blindness among adults in the United States. The total
direct and indirect costs associated with diabetes were $178 billion in
2007. Preventive care such as routine eye and foot examinations, self-
monitoring of blood glucose, and glycemic control could reduce these
numbers.
Arthritis is the most common cause of disability in the United
States, striking 50 million Americans of all ages, races and
ethnicities. CDC's Arthritis Program plays a critical role in
addressing this growing public health crisis.
Over the last 25 years, obesity rates have doubled among 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. CDC funds programs to encourage the
consumption of fruits and vegetables, encourage sufficient exercise,
and to develop other habits of healthy nutrition and activity. An
estimated 443,000 people die prematurely every year due to tobacco use.
CDC's tobacco control efforts seek to prevent tobacco addition in the
first place, as well as help those who want to quit. We must continue
to support these vital programs and reduce tobacco use in the United
States.
Each day more than 3,800 young people initiate cigarette smoking.
At the same time, according to CDC, only 1 out of 3 high school
students participate in daily physical education classes. Seventy-eight
percent of high school students do not eat the recommended number of
servings of fruits and vegetables, while 1 in 3 children and
adolescents are overweight or obese. And every year, more than 400,000
teen girls give birth and nearly half of all sexually transmitted
diseases occur in young people between the ages of 15 and 24. CDC plays
a critical role in ensuring good public health and health promotion in
our schools.
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. CDC estimates that about 1.1 million Americans are living
with HIV, 21 percent of who are undiagnosed. Also, the number of people
living with HIV is increasing, as new drug therapies are keeping HIV-
infected persons healthy longer and dramatically reducing the death
rate. Prevention of HIV transmission is the best defense against the
AIDS epidemic that has already killed more than 619,400 in the United
States and is devastating populations around the globe.
The United States has the highest rates of sexually transmitted
diseases (STDs) in the industrialized world. More than 19 million new
infections occur each year, almost half of them among young people. CDC
estimates that STDs, including HIV, cost the U.S. healthcare system as
much as $17 billion annually. An adequate investment in STD prevention
could save millions in annual healthcare costs in the future.
CDC and its National Center for Health Statistics collect data on
chronic disease prevalence, health disparities, emergency room use,
teen pregnancy, infant mortality and causes of death. The health data
collected through the Behavioral Risk Factor Surveillance System, Youth
Risk Behavior Survey, Youth Tobacco Survey, National Vital Statistics
System, and National Health and Nutrition Examination Survey are an
essential part of the Nation's statistical and public health
infrastructure.
We must address the growing disparity in the health of racial and
ethnic minorities. CDC is helping States address serious disparities in
infant mortality, breast and cervical cancer, cardiovascular disease,
diabetes, HIV/AIDS and immunizations. Our members are committed to
ending the disparities and we encourage the Subcommittee to provide
adequate funds for these 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 healthcare 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 and significant racial and ethnic disparities
in vaccination levels persist among the elderly. 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. Childhood immunizations provide one of the best
returns on investment of any public health program. For every dollar
spent on seven vaccines recommended in the childhood series, $16.50 is
saved in direct and indirect costs. An estimated 14 million cases of
childhood disease and 33,000 deaths are prevented each year through
timely immunization. Despite the incredible success of the program, it
faces serious financial challenges.
Injuries are the leading causes of death for persons aged 1-44
years. Unintentional injuries and violence such as older adult falls,
unintentional drug poisonings, child maltreatment and sexual violence
accounts for over 35 percent of emergency department visits annually.
Annually, injury and violence cost the United States approximately $406
billion in direct and indirect medical costs including lost
productivity. Unintentional injury consistently remains the leading
cause of death among young Americans ages 1-34 with the majority of
unintentional fatal injuries caused by motor vehicle traffic
fatalities. CDC's Injury Center works to prevent unintentional and
violence-related injuries to minimize the consequences of injuries when
they occur by researching the problem; identifying the risk and
protective factors; developing and testing interventions and ensuring
widespread adoption of proven strategies.
One in every 33 babies born each year in the United States is born
with one or more birth defects. Birth defects are the leading cause of
infant mortality. Children with birth defects who survive often
experience lifelong physical and mental disabilities. More than 50
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. The National Center on Birth Defects and Developmental
Disabilities 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.
CDC's National Center for Environmental Health is essential to
protecting the health and well-being of the American public from
threats associated with West Nile virus, climate change, terrorism, E.
coli, lead-based paint and other hazards. NCEH funds programs to reduce
the burden of asthma in our States and communities and to track the
impact of environmental exposures on our health. We ask you to support
adequate funding for these vital programs which has been significantly
reduced over the past several years.
We thank you for your past support and urge you to adopt our fiscal
year 2013 request of $7.8 billion for CDC's programs.
______

Prepared Statement of the Christopher & Dana Reeve Foundation
Senator Harkin, Ranking Member Shelby and Members of the
Subcommittee, thank you for the opportunity to submit testimony in
support of funding for the National Center on Birth Defects and
Developmental Disabilities (NCBDDD) within the Centers for Disease
Control and Prevention, as well as on the importance of a strong
Federal investment in medical research at the National Institutes of
Health (NIH).
I am Matthew Reeve, the eldest son of Christopher Reeve, and I have
served on the Board of the Christopher & Dana Reeve Foundation since
2006. I also serve on the Foundation's Quality of Life Committee, which
funds programs across all 50 States and around the globe to help people
living with paralysis become more fully integrated members of society.
The Foundation is dedicated to both curing spinal cord injury by
funding innovative research and to improving the quality of life for
nearly 6 million people currently living with paralysis and those that
care for them. Since its inception, the Foundation has provided $100
million in research grants to more than 750 researchers, and has
provided over $15 million to almost 2,000 organizations across the
country through our Quality of Life grants program.
It is a priority of the Reeve Foundation to ensure that individuals
living with spinal cord injury and paralysis have access to the
resources and tools necessary to live life to their fullest abilities.
When my father suffered his injury in 1995, the world was a different
place for those living with a spinal cord injury. I was 15 years old at
the time of his accident, and I remember those first few weeks after
his injury very clearly. I will never forget the sense of helplessness
that we all felt, coupled with the knowledge that in an instant my
father's life, as well as that of our entire family, had changed
forever. Being active one day, and immobile the next, thrusts you and
your family into an entirely new existence. Every day we found that
there were more questions to be answered yet information and services
were limited and difficult to locate. The unanswered issues we faced
were outside the expertise of the doctors, nurses and staff at the
Intensive Care Unit. We felt that we had nowhere to turn. Following our
family's experience, my stepmother Dana was determined to do whatever
she could to ensure that other families did not encounter the same
problem.
Led by her charge, over the past 10 years the Reeve Foundation has
created a national resource center to help individuals and their
families navigate a complicated healthcare system and to provide them
with the tools and information they need to lead a productive and
fulfilling life. The Paralysis Resource Center (PRC) funded through the
NCBDDD, partners with organizations across the country to offer
programs that promote independent and healthy living for all
individuals living with paralysis. Currently, the PRC provides services
to over 500,000 individuals annually, and is indispensable in providing
vital information and services that the paralysis community depends
upon each day. The PRC provides patients with access to state-of-the-
art therapies focused on improving health and mobility; guidance for
evaluating rehab facilities and redesigning a home to make it wheel
chair accessible; referrals to community support programs; and
information and resources on a full range of topics related to
paralysis and issues that arise from secondary complications.
The Foundation is extremely proud of the infrastructure that has
been built through support from NCBDDD, as well as the programs that
serve the disability community beyond spinal cord injury and paralysis.
NCBDDD was established by Congress in 2000, and is the only entity
within the Federal Government that focuses on the specific needs of
many of our Nation's most fragile populations. The Foundation is very
concerned about both the funding and structure of the Center in the
President's budget. The President's fiscal year 2013 budget recommends
a funding level of $126 million, a decrease of $11 million, for NCBDDD.
To achieve these reductions, CDC has indicated that they plan to focus
on cutting research, resource, surveillance programs, and information
centers. These programs are a critical component of our Nation's public
health infrastructure, and cutting them puts the infrastructure we have
worked so hard to create at great risk. Second, in an effort to create
efficiencies and cost savings, the President's budget proposes
consolidation of funding for Federal agencies, including the CDC.
Within the CDC is a proposal to consolidate the ten disability
programs' funding lines that fall under the NCBDDD Division of Human
Development and Disability into one.
Last year, a similar consolidation of NCBDDD was proposed in the
President's budget. In response, and under your leadership Chairman
Harkin, Congress included report language in the fiscal year 2012 L-HHS
Appropriations Subcommittee conference report rejecting the proposed
consolidation and directing the CDC to conduct a needs assessment
before moving forward with future consolidation proposals. Members of
the disability community came together to work with Congress to stop
consolidation from moving forward because we knew that consolidation of
disability programs funded through NCBDDD would be devastating not only
for the spinal cord injury and paralysis population, but for the entire
disabled community. We are grateful for the support shown by you,
Chairman Harkin, and your Subcommittee. However, despite the
congressional direction, consolidation is back in this year's budget
and is not accompanied by the conference committee's requests.
On behalf of the Christopher & Dana Reeve Foundation, and the
nearly 6 million individuals affected by spinal cord injury and
paralysis, I ask that this Subcommittee once again reject the proposed
NCBDDD consolidation included in the President's budget and direct CDC
to conduct a needs assessment which reflects the impact of
consolidation on the disability groups represented by NCBDDD.
Programs funded through the NCBDDD are making an active difference
in the lives of millions of individuals living with a disability. For
the paralysis community, funding for the PRC is essential in the day-
to-day lives of thousands of individuals living with paralysis. I am
incredibly grateful for the ongoing support this committee has shown
the disability community and for the relationships we have built on
behalf of the Foundation.
A core mission of the Reeve Foundation is to invest in research to
develop effective treatments for acute and chronic spinal cord injury.
But we cannot do it alone. A strong Federal investment in medical
research at the NIH is critical in the quest for better cures and
treatments for the paralysis community. The Foundation supports an
appropriation of $32 billion for NIH in fiscal year 2013. The NIH funds
some of the most groundbreaking research in the areas of spinal cord
injury and paralysis and a strong Federal investment is critical so we
can achieve our shared goal.
NIH grants have supported the basic science of locomotor training
and advanced the current research being conducted in epidural
stimulation. NIH has also funded the Tongue Drive System, which is a
wireless device that enables people with high-level spinal cord
injuries to operate a computer and maneuver an electrically powered
wheelchair simply by moving their tongues. These are examples of how
NIH is turning research into reality and changing the lives of those
living with paralysis. We need the support of this Subcommittee to
ensure that NIH receives the necessary funding to continue to advance
this critical research.
As you move forward with the budget process we look forward to
working with this Subcommittee to stop consolidation of the NCBDDD
until the impact of the consolidation on the communities served by
NCBDDD is addressed, as well as ensuring a strong Federal investment in
medical research at the NIH.
Thank you again, Mr. Chairman, for the opportunity to submit my
testimony on behalf of the Foundation.
______

Prepared Statement of the Children's Environmental Health Network
The Children's Environmental Health Network (CEHN or the Network)
providing testimony on fiscal year 2013 appropriations, especially
appropriations for the Centers for Disease Control and Prevention (CDC)
and the National Institute of Environmental Health Sciences (NIEHS), an
institute within the National Institutes of Health (NIH).
This year, the Children's Environmental Health Network is
celebrating its 20th anniversary as a national nonprofit organization
whose mission is to protect the developing child from environmental
hazards and promote a healthier environment. The Network's Board and
committee members include internationally recognized experts in
children's environmental health science and policy who serve on key
Federal advisory panels and scientific boards. We recognize that
children, in our society, have unique moral standing.
The Network is deeply concerned about the health of the Nation's
children and urges the Subcommittee to help all children grow up in
healthy environments by embracing its role in protecting our
environment and our health.
American competiveness depends on having healthy educated children
who grow up to be healthy productive adults. Yet, growing numbers of
our children are diagnosed with chronic and developmental illnesses and
disabilities. The National Academy of Sciences estimates that toxic
environmental exposures play a role in 28 percent of neurobehavioral
disorders in children and this does not include other conditions such
as asthma or cancers. Thus, it is vital that the Federal programs and
activities that protect children from environmental hazards receive
adequate resources.
CEHN urges the Subcommittee to provide funding at or above the
requested levels for the following CDC and NIEHS activities: National
Center for Environmental Health; National Asthma Control Program and
the Healthy Homes/Lead Poisoning Prevention Program; National
Environmental Public Health Tracking Program; National Institute of
Environmental Health Sciences; Children's Environmental Health Research
Centers of Excellence; and National Children's Study.
Centers for Disease Control and Prevention (CDC)
The CDC is the Nation's leader in public health promotion and
disease prevention, and should receive top priority in Federal funding.
CDC continues to be faced with unprecedented challenges and
responsibilities. CEHN urges you to support a funding level of $7.8
billion for CDC's core programs in fiscal year 2013.
Within CDC, the National Center for Environmental Health (NCEH) is
particularly important to protect the environmental health of young
children. NCEH programs, such as its efforts to continue and expand
biomonitoring and its national report card on exposure information, are
key national assets. CEHN is thus deeply concerned about the proposed
severe cuts to CDC's environmental public health programs in the
President's fiscal year 2013 budget. NCEH has absorbed a
disproportionately large share of the imposed cuts. Since fiscal year
2009, NCEH funding has been cut approximately 25 percent.
We strongly recommend that the National Asthma Control Program and
the Healthy Homes/Lead Poisoning Prevention Program remain separate and
distinct programs. The National Asthma Control Program works to reduce
the burden of asthma, which affects 25 million Americans including 7
million children. The 36 State and territorial programs funded by the
National Asthma Control Program include surveillance, environmental
measures to reduce exposure to indoor and outdoor air pollutants,
awareness and self-management education, and appropriate healthcare
services.
The Healthy Homes and Lead Poisoning Prevention Program, serves the
12.3 million children with harmful lead levels. The 35 State programs
funded by the program screen children for lead poisoning, track the
incidence of the disease, inspect homes for environmental hazards, and
conduct community lead poisoning prevention initiatives.
The goals of the two programs as well as their target patient
groups and methods of delivering services are markedly different. We
strongly support maintaining the separation of these two programs to
enable them to continue to fulfill their distinct missions.
We support reinstatement of CDC's Healthy Homes and Lead Poisoning
Prevention Program at $29 million (the same as fiscal year 2011 and
support an additional valuable targeted increase (8.6 percent) to
certain NCEH programs.
CDC's National Environmental Public Health Tracking Program tracks
environmental hazards and the diseases they may cause and coordinates
and integrates local, State and Federal health agencies' collection of
critical health and environmental data. Public health officials need
integrated health and environmental data so that they can protect the
public's health. We urge you to reverse the CDC operating plan for
fiscal year 2011 and 2012, which eliminated all budget authority for
this vital program. We urge you to support additional funding for the
program in fiscal year 2013. Its biomonitoring activities allow the
measurement of the actual levels of more than 450 chemicals and
nutritional indicators in people's bodies. This information helps
public health officials to determine which population groups are at
high risk for exposure and adverse health effects, assess public health
interventions, and monitor exposure trends over time.
National Institutes of Health (NIH)
The National Institute of Environmental Health Sciences (NIEHS) is
the leading institute conducting research to understand how the
environment influences the development and progression of human
disease. Children are uniquely vulnerable to harmful substances in
their environment, and the NIEHS plays a critical role in uncovering
the connections between environmental exposures and children's health.
Thus, it plays a vital role in our efforts to understand how to protect
children, whether it is identifying and understanding the impact of
substances that are endocrine disruptors or understanding childhood
exposures that may not affect health until decades later.
NIEHS' fiscal year 2013 President's budget is at $684 million
(exclusive of Superfund amounts under Subcommittee on the Interior,
Environment, and Related Agencies appropriations). This represents a
reduction of $725,000 from NIEHS' fiscal year 2012 budget, which will
have an impact on their program and research on children's
environmental health. CEHN, therefore, urges you to set NIEHS' fiscal
year 2013 budget at least to its fiscal year 2012 level.
Children's Environmental Health Research Centers of Excellence
The Children's Environmental Health Research Centers, jointly
funded by the NIEHS and the U.S. Environmental Protection Agency (EPA),
play a key role in providing the scientific basis for protecting
children from environmental hazards. With their modest budgets, which
have been unchanged for more than 10 years, these Centers generate
valuable research. A unique aspect of these Centers is the requirement
that each Center actively involves its local community in a
collaborative partnership, leading both to community-based
participatory research projects and to the translation of research
findings into child-protective programs and policies. The scientific
output of these centers has been outstanding. For example, findings
from four Centers clearly showed that prenatal exposure to a widely
used pesticide affected developmental outcomes at birth and early
childhood. This was important information to EPA's decisionmakers in
their regulation of this pesticide.
Several Centers have established longitudinal cohorts, which have
resulted in valuable research results. The Network is concerned that as
a Center's multi-year grant ends and the Center is shuttered, these
cohorts and the invaluable information they can provide are being lost.
The Network urges the Subcommittee to assure that NIEHS has the funding
and the direction to support Centers in continuing these cohorts.
The work of these Centers has also shown us that, in addition to
research regarding a specific pollutant or health outcome, research is
desperately needed in understanding the totality of the child's
environment--for example, all of the exposures the child experiences in
the home, school, and child care environment--and how to evaluate those
multiple factors. CEHN urges you to support these Centers, to assure
they receive full funding and are extended and expanded as described
above.
National Children's Study
The National Children's Study (NCS) is examining the effects of
environmental influences on the health and development of more than
100,000 children across the United States, following them from before
birth until age 21. This landmark longitudinal cohort study--involving
a consortium of agencies including NIEHS and CDC--will be one of the
richest research efforts ever geared toward studying children's health
and development and will form the basis of child health guidance,
interventions, and policy for generations to come. We urge the
Subcommittee to assure that the NCS retains on its original focus on
environmental chemicals and assure that the communities most at risk
are well represented in the cohort. While the NCS is housed at NICHD,
it must be a multi-agency study and it must be responsive to its
mission and to its partner agencies.
Investments in programs that protect and promote children's health
will be repaid by healthier children with brighter futures. Protecting
our children--those born as well as those yet to be born--from
environmental hazards is truly a national security issue. Cutting or
weakening programs that protect children from harmful chemicals in
their environment is not only very costly to our Nation (for example,
the Clean Air Act Amendments of 1990 have saved $1 trillion in
healthcare costs). Such cuts will reduce the number of exceptionally
bright children.
We understand that our Federal budget faces many long-term
challenges, but we also believe strongly that a commitment to and
strong investment in environmental public health activities will be
critical to our Nation's long-term fiscal and physical health. We thank
you for considering these recommendations.
In conclusion, investments in programs that protect and promote
children's health will be repaid by healthier children with brighter
futures, an outcome we can all support. That is why CEHN asks you to
give priority to these programs. Thank you for the opportunity to
comment.
______

Prepared Statement of the Coalition of EPSCoR/IDeA States and the
Mississippi Research Consortium
Mr. Chairman and Members of the Subcommittee; thank you for the
opportunity to submit this statement regarding fiscal year 2013 funding
for the National Institutes of Health's Institutional Development Award
or ``IDeA'' Program. My name is Dr. David Shaw and I am the Vice
President for Research and Economic Development at Mississippi State
University. I submit this testimony on behalf of the Coalition of
EPSCoR/IDeA States and the Mississippi Research Consortium (MRC) to
include the following research institutions in our State: University of
Southern Mississippi (USM), University of Mississippi (UM)/University
of Mississippi Medical Center (UMMC), Mississippi State University
(MSU), and Jackson State University (JSU).
Impact of the IDeA Program on Mississippi
Please allow me to describe how the INBRE and COBRE programs have
dramatically impacted the biomedical landscape across the State of
Mississippi.
INBRE
Mississippi's INBRE is located on the campus of the USM in
Hattiesburg, Mississippi. A statewide network, the INBRE includes all
five research-intensive institutions, six Partner Undergraduate
Institutions (PUIs) and eight Outreach Institutions. The MS-INBRE
represents the largest network of institutions in Mississippi with the
mission to promote biomedical research and training in the State. The
instrumentation core of the project includes the Genomics Facility
located at the UMMC, the Imaging Facility located at the USM, and the
Proteomics Core located at MSU. These facilities are available to all
Mississippi scientists and students at no cost thus providing access to
high cost equipment that promotes biomedical research in the State. The
Bioinformatics Core is a new initiative through the INBRE that has
brought together bioinformatics faculty from across Mississippi who
serves as the backbone providing support and resources in research,
training and education, and infrastructure.
MS-INBRE continues to build on existing interdisciplinary
collaborations, create new collaborative efforts, address the serious
cyberinfrastructure needs in Mississippi, and train students in
bioinformatics at the Partner Undergraduate Institutions. Particularly,
many students would not have the opportunity to participate in
biomedical research training without this funding which in turn means
that we lose a lot of brain power and disenfranchise a lot of bright
students in Mississippi.
The established research labs at PUIs have made a great impact on
the number of undergraduate students trained in biomedical research.
The ``success rate'' is defined as the percentage successfully pursing
biomedical career via graduate school, professional school, teaching or
working in research.
--Undergraduates trained via 12-week intensive summer internships =
313 (success rate = 90 percent).
--Undergraduates trained via working in MS-INBRE PUI labs = 127
(success rate 94 percent).
--Total Mississippi undergraduate students trained = 440.
Please note the importance of the opportunity that this funding has
provided for these students who otherwise would have not had the
research training. These students are the future researchers,
clinicians, scientists, teachers, policymakers, etc. If we do not
continue to provide these opportunities, Mississippi, and our Nation,
will fall even farther behind other countries in STEM areas.
--Training our students to work with faculty and help write grant
proposals has been successful: 54 funded projects with 14 more
currently pending.
Examples from NIH: 3 R01; 1 R21; 12 R15; 5 Publications: 119
peer-reviewed pubs; 6-Presentations at scientific meetings:
386.
COBRE in Mississippi
University of Mississippi (UM).--UM's first COBRE project, the
Center for Psychiatric Neuroscience (CPN), was initiated 9 years ago at
the University of Mississippi Medical Center in Jackson. The CPN is
dedicated to generating knowledge about the relationships between
neurobiology and clinical psychiatry. Over the past 9 years, CPN has
made major strides toward its goal of becoming a depression research
center that is innovative, multidisciplinary and increasingly
independently funded; COBRE funding in the past 9 years has supported
CPN-affiliated faculty in successfully competing for $9,082,910 in
Federal grants and $923,702 in foundation grants. COBRE's support has
been instrumental in achieving this--and continues to be instrumental.
CPN has developed focuses in the areas of depression and alcohol
dependence; both of these are recognized as highly prevalent, serious
concerns in the United States. Of all mental illnesses, depression is
the most common; it is a serious, persistent and potentially life-
threatening medical illness affecting nearly 10 million American adults
in any year (Healthy People 2010). It is estimated that lost
productivity due to depression costs $44 billion per year in the United
States (Stewart et al., 2003). Although antidepressant medications and
psychotherapy provide some benefit to many people, depression continues
to be a chronic and potentially life-threatening illness. New treatment
strategies remain a high priority for many reasons: depression is a
complex syndrome of variable symptoms; the sites of pathology in the
brain appear to be multiple; and, most significantly, only about 50
percent of individuals with depression show full remission in response
to currently available therapies (Berton and Nestler, 2006). Alcohol
use disorders are also very common in the United States, with
approximately 7 percent of adults being alcohol dependent. There is a
high correlation between alcohol use disorders and other psychiatric
problems. Shrinkage of the brain is significantly present in alcohol-
dependent subjects, and the development of new therapies is impeded by
a lack of understanding of the precise mechanism leading to this
pathological shrinkage.
Projects funded by the CPN have been unique in describing the
monoamine and excitatory amino acid neurotransmitter systems, and the
contributions of vascular, gender-specific and aging-related risk
factors to the pathophysiology of depression and alcohol dependence.
Groundbreaking observations on the roles of neurons and glia, cerebral
vasculature, aging, gender, transcription factors, serotonin and
glutamate in depression as well as alcohol dependence have been
reported by a critical mass of faculty of the CPN and its academic
home, UMMC's Department of Psychiatry and Human Behavior. The CPN has
provided an excellent environment for junior, mid-level and senior
investigators working in close collaboration with leading national
centers and scientists to carry out the projects building on these
novel insights into the pathophysiology of depression and alcoholism.
The University of Mississippi's second COBRE project, Center of
Research Excellence in Natural Products Neuroscience (CORE-NPN), was
initiated 5 years ago at the university's main campus in Oxford to
evaluate the effects of natural products on the central nervous system
(CNS). CORE-NPN has developed a multidisciplinary team committed to
studying the neuroscientific properties of natural products and
identifying potential new targets for the treatment of various
disorders. CORE-NPN builds on UM's existing strengths at the National
Center for Natural Products Research (NCNPR), the Nation's only
university-affiliated research center devoted to improving human health
and agricultural productivity through the discovery, development, and
commercialization of pharmaceuticals and agrochemicals derived from
natural products. With the development of the NIGMS COBRE CORE-NPN, the
research capacity of NCNRP to discover new drugs for unmet therapeutic
needs has skyrocketed. CORE-NPN has allowed UM's investigators to
synergize their efforts with the resources provided through the
existing NCNPR to develop an unmatched program in natural products
neuroscience.
CORE-NPN has allowed faculty in the NCNPR (and other UM
departments) to develop expertise in a previously unavailable area.
Expertise exists among the CORE-NPN faculty to extract and purify the
chemical constituents of plants, microbes, and marine organisms; to
perform bioassay-guided fractionation to rapidly identify active
natural products from complex mixtures of metabolites; to elucidate the
chemical structures of isolated natural products; to scale up these
quantities for research; to perform in vitro characterization of their
actions; and to perform in vivo behavioral studies to further evaluate
their properties, therapeutic potential, and liabilities. Additional
expertise exists to further modify promising leads into even better
therapeutic compounds, perform limited toxicity tests, formulate drug
delivery systems, and to conduct small-scale clinical trials in
collaboration with UMMC. CORE-NPN participating faculty continue to
increase their funding success rate. The growing number of faculty
awards in natural product neuroscience has a strongly beneficial impact
on UM (home of the State's only School of Pharmacy) and in turn on the
reputations of the center's faculty and staff. Further, the CORE-NPN's
research-intensive programs provide quality research and
interdisciplinary training for students, enhance recruitment efforts,
and further the development of novel natural products as potential
therapeutic agents.
A solid core of natural product researchers developed during Phase
1 of the COBRE at UM are making cutting-edge discoveries on the
endocannabinoid, opioid and sigma systems. The endocannabinoid system
is regarded as a major regulatory system in the central and peripheral
nervous systems and is involved in the modulation of a variety of
physiological processes; among them is control of emotional behavior,
suggesting the involvement of this system in the pathogenesis of mental
disorders. The endocannabinoid system is also linked to appetite,
emesis, pain, hypertension, and cardiac remodeling. CORE-NPN
researchers have made novel observations of natural products from
Cannabis on appetite in rodents; are evaluating the potential
usefulness in treating depression with several novel phytocannabinoids;
are developing computational models that can be used to predict a
compound's ability to have affinity for the cannabinoid receptors; and
have developed novel agents that attenuate the effects of cocaine and
methamphetamine. The COBRE program funding has allowed UM to develop
several pre-clinical candidates that might have utility in managing
obesity, wasting syndrome, depression, anxiety, and drug addiction, and
more. The critical mass of scientists working in the CNS area has
increased from 5 to 23 scientists as a result of COBRE Phase 1 funding,
and the significant rise in endocannabinoid-related publications
reveals strong development by the CORE-NPN that is innovative,
multidisciplinary, and moving toward the goal of independent funding
for its programs.
As part of the COBRE program, investigators are mentored to foster
and facilitate their development as young scientists. The ability to
secure external funding is the major index of success showing the
transition from ``young investigator'' to ``independent scientist.''
The graph below, of fiscal year Federal grant funding, outlines the
year-to-year progression in external funding awards obtained since the
inception of CORE-NPN. This effort resulted in a total of 38 grant
awards and included: 13-R-type NIH grants, 1-ARRA Supplement, 5-NSF, 1-
F32, 2-HRSA, 2-NOAA, 1-DOD, and 1-P50, among others.

This increase in funding dollars is directly related to the number
of applications the young faculty members made while enrolled in the
COBRE Mentoring Plan. The 38 grant awards have been a result of 113
Federal grant applications and 24 grant foundation applications
submitted by the enrolled faculty. Overall, the mentorship has resulted
in a success rate of 34 percent for NIH grant awards, which is much
greater than the national average.
Mississippi State University.--Mississippi State University was
awarded a COBRE in 2002-2008 and the benefits of that center are still
obvious. The funding supported research on the susceptibility of the
dopamine neurons in the Nurr1-null heterozygous mice to neurotoxin
exposure. The best lab space in the College of Veterinary Medicine is
the Wise Center which was designed and renovated using COBRE funds.
Frequently used equipment was obtained. Most importantly, the three
faculty members who were involved by the end of the previous COBRE as
junior investigators have received NIH funding, and one of them has
been consistently averaging more than 5 peer reviewed publications per
year.
MSU currently has a pending COBRE application which involves an
area of research that is already one of our strongest--infectious
diseases. With the mentoring, research, and infrastructure funding from
the COBRE, we expect to develop teams that will be competitive for
center grants and individuals competitive for research grants from
major funding agencies.
The COBRE program is even more important to MSU and similar
institutions in recent years than it was when the first one was awarded
at MSU. Because the success rate for NIH grant applications is so low
nationally, it is difficult for anyone to compete for this funding, and
it is particularly difficult when the applicant is located at an
institution that is not well known for its biomedical research. The
COBRE will give five of MSU's most promising junior investigators an
opportunity to build their scientific reputation by supporting their
research, and it will give them formalized internal and external
mentoring needed to teach them the skills and to help them build their
professional networks needed for success. This will make our
investigators better collaborators for other researchers in Mississippi
and will enhance collaborations that already exist. It will also
provide research support for investigators who have already shown
interest and skill in commercializing their research ideas (two of our
COBRE application leaders and one junior investigator have taken steps
toward development of intellectual property, up to and including
formation of a company).
Despite these successes, our task is far from complete. Funding
disparities between the States remain and may have a detrimental impact
on our national self-interest. And that is why the IDeA program is so
important. It is helping to ensure that all regions of the country
participate in biomedical research and education. Citizens from all
States should have the opportunity to benefit from the latest
innovations in healthcare, which are most readily available in centers
of biomedical research excellence.
On behalf of the MRC, I express gratitude to this Subcommittee for
the efforts it has made over the years to provide increased funding for
IDeA, in particular this committee's work to ensure a funding increase
in fiscal year 2012. I hope that you will continue to invest in this
program, which is so important to almost half of the States in the
Union. The importance of this program, especially to junior
investigators who are starting to become competitive for NIH funding,
should not be underestimated. They should not receive the wrong message
by cutting or even possibly eliminating funding for their research
after encouraging them to pursue a career in biomedical research.
On behalf of the EPSCoR/IDeA Coalition, the MRC, and our partner
institutions across Mississippi, I thank the Subcommittee for the
opportunity to submit this testimony.
______

Prepared Statement of the Cystic Fibrosis Foundation
On behalf of the Cystic Fibrosis Foundation and the approximately
30,000 people with cystic fibrosis (CF) in the United States, we are
pleased to submit the following testimony to the Senate Appropriations
Subcommittee on Labor, Health and Human Services, Education and Related
Agencies requesting $32 billion for the National Institutes of Health
(NIH) in fiscal year 2013. Particularly, the CF Foundation urges the
Committee to support NIH's National Center for Advancing Translational
Sciences (NCATS), programs under the NCATS umbrella including the
Therapeutics for Rare and Neglected Diseases (TRND) program, and
collaborative efforts by NIH and the Food and Drug Administration (FDA)
such as the Regulatory Science Initiative and the FDA-NIH Joint
Leadership Council.
about cystic fibrosis
Cystic fibrosis is a life-threatening genetic disease for which
there is no cure. People with CF have two copies of a defective CFTR
gene, which causes the body to produce abnormally thick, sticky mucus
that clogs the lungs and results in life-threatening lung infections.
This mucus also obstructs the pancreas, preventing pancreatic enzymes
from assisting in the breakdown of food and the absorption of
nutrients.
The mission of the Cystic Fibrosis Foundation is to find a cure for
cystic fibrosis and improve the quality of life for people living with
the disease. This is accomplished by funding life-saving research and
working to provide access to quality care and effective therapies for
people with CF. Through the Foundation's efforts, the life expectancy
of a child with CF has doubled in the last 30 years. Although real
progress toward a cure has been made, the lives of young people with CF
are still cut far too short.
sustaining the federal investment in biomedical research
This Committee and Congress are to be commended for their support
for biomedical research through the years, particularly for increasing
funding for the NIH and establishing the National Center for Advancing
Translational Sciences (NCATS) in fiscal year 2012. It is vital that we
continue to provide robust funding for the NIH, so that it can allow
patients to benefit from scientific advances like the mapping of the
human genome, and continue to train the next generation of scientists,
create new jobs, and promote economic growth.
We support the recommendation of the Ad Hoc Group for Medical
Research that the Subcommittee recognize the National Institutes of
Health (NIH) as a critical national priority by providing at least $32
billion in funding in the fiscal year 2013 Labor-HHS-Education
appropriations bill. This funding recommendation represents the minimum
investment necessary to avoid further loss of promising research and at
the same time allows the NIH's budget to keep pace with biomedical
inflation.
A report from United for Medical Research indicates that funding
from the National Institutes of Health supported more than 432,000 jobs
and generated more than $62.1 billion in economic activity in 2011.
Cutting funding for NIH would not only curb this economic growth, but
would impede the fight against many of the most serious diseases and
stifle the scientific progress that makes the United States the
worldwide leader in biomedical research.
We urge this Committee and Congress to maintain robust investment
in biomedical research at the NIH so it can fund critical research
today that will provide the cures of tomorrow.
strengthening clinical research and drug development
In the past two decades the Cystic Fibrosis Foundation has
pioneered an innovative research approach resulting in a robust
pipeline of potential therapies that target cystic fibrosis from every
angle.
As part of this approach the Foundation created a ``venture
philanthropy'' model, through which CFF has raised and invested
hundreds of millions of dollars to help fund cystic fibrosis drugs and
therapies. Nearly every CF drug and therapy available today was
supported by the CF Foundation. By providing upfront funding and
reducing financial risk for drug companies like Vertex Pharmaceuticals,
CFF has made sure that this rare disease has not been ignored.
The Foundation has also created a Therapeutics Development Network
(TDN) to achieve greater efficiency in clinical investigation.
Challenges inherent in small patient populations, like the availability
of participants for clinical trials, prompted the Foundation to create
a network of academic centers and CF care centers that collaborate
across sectors and share best practices, speeding clinical research on
promising potential treatments.
One such treatment developed through this approach is
Kalydeco^TM, a groundbreaking new drug created by Vertex
Pharmaceuticals in collaboration with the Cystic Fibrosis Foundation.
Kalydeco is a breakthrough as it is the first treatment to address the
underlying cause of cystic fibrosis in 1,200 patients with a particular
genetic mutation. It has led to tremendous health gains for those who
take the drug and has opened exciting new doors to research and
development that may eventually lead to a cure for all people living
with CF.
While the CF Foundation has made great progress, still more needs
to be done for cystic fibrosis and other rare diseases, many of which
have no treatments available. We are hopeful that the Committee will
bolster programs that support translating basic scientific research
into therapies that can make a real difference to vulnerable patient
populations.
Advancing Translational Science at the NIH
The CF Foundation strongly urges this Committee to increase funding
for NIH's newly established National Center for Advancing Translational
Sciences (NCATS), which will catalyze innovation by improving the
process by which diagnostics and therapeutics are developed, thereby
diminishing obstacles to translating basic scientific research into
treatments. This will make translational science more efficient, less
expensive, and less risky.
The specific programs housed in NCATS are integral to this mission,
including the Clinical and Translational Science Awards (CTSA), the
Cures Acceleration Network (CAN), and the Therapeutics for Rare and
Neglected Diseases (TRND) program. They are designed to transform the
way in which clinical and translational research is conducted and
funded. NIH Director Dr. Francis Collins has cited the Cystic Fibrosis
Foundation's successful Therapeutics Development Network as a model for
TRND's innovative therapeutics development model.
NCATS is already advancing a number of initiatives. For example,
NCATS is working with the Defense Advanced Research Projects Agency
(DARPA) and the FDA to design a tissue chip for drug screening. This
chip, composed of diverse human cells and tissues, mimics how drugs
interact in humans. If successful, this chip could make drug safety and
efficacy assessments more accurate and even make them possible earlier
in the development process--enabling investigators to concentrate on
the most promising new drugs.
Robust funding for NCATS will give industry, academia, and other
stakeholders the tools and resources needed to speed the development of
diagnostics and treatments.
Increasing Collaboration
The CF Foundation urges the Committee to support collaborative
efforts by the Food and Drug Administration and the National Institutes
of Health, such as the Regulatory Science Initiative and the FDA-NIH
Joint Leadership Council. Collaboration between the NIH and FDA has the
potential to help move innovative new drugs more quickly through the
development process and into the hands of patients by ensuring that the
FDA has the resources, strategies, and tools it needs to efficiently
review and regulate drugs in this ever changing scientific landscape.
As treatments like Kalydeco are being developed to target specific
genetic mutations and smaller and smaller populations, it is important
that the FDA has the expertise it needs to quickly move these drugs
through the review process.
Support should also be directed toward the continuation and
expansion of research networks, such as NIH's pediatric liver disease
consortium at the National Institute of Diabetes, Digestive, and Kidney
Diseases (NIDDK). This successful collaboration is helping researchers
discover treatments not only for CF liver disease but for other
diseases that affect thousands of children each year.
supporting drug discovery
The Cystic Fibrosis Foundation's clinical research is fueled by a
drug discovery effort comprised of early stage translational research
into successful treatments for this disease. Several research projects
at the NIH could eventually be the key to controlling or curing cystic
fibrosis.
For example, the CF Foundation commends NIH for issuing two
Requests for Applications (RFAs) that specifically target cystic
fibrosis--one on early lung disease and the other on cystic fibrosis
related diabetes. The Cystic Fibrosis Foundation also encourages NIH to
continue its investment in a research program at the University of Iowa
to study the effects of CF in a pig model. The program, funded through
research awards from the National Heart, Lung, and Blood Institute
(NHLBI) and the CF Foundation, bears great promise to help make
significant developments in the search for a cure.
Understanding CFTR Folding and Trafficking
The data that emerged from Kalydeco Phase 2 and 3 clinical trials
is proof that the way in which this drug targets the physiological
defect that causes CF, called CFTR protein function modulation, is a
viable therapeutic approach. However, this exciting data was obtained
from patients with a specific CF mutation which affects only 4 percent
of the CF population. More research is needed to understand other
genetic mutations, the most common of which causes multiple negative
effects, including misfolding and poor activation properties of the
CFTR protein. We encourage the Committee to increase investment in
genetic research that can help scientists to better understand this
more common mutation.
Personalized Medicine
Strong Federal and private investment in research is bringing
personalized medicine to the forefront of drug research and
development. Kalydeco, discussed above, is an outstanding example of
the power of personalized medicine. If the 4 percent of the CF
population for which Kalydeco is effective had not been properly
identified and targeted for this therapy, the studies would have
concluded that Kalydeco was not effective, because 95 percent of
patients would not have responded.
While exciting and promising for patients, the advancement of
personalized medicine is also expensive, complex, and scientifically
challenging. For instance, CF doctors are facing difficulties in
delivering appropriate care to CF patients, as insurance providers will
not cover certain combinations of medicines that clinicians have found
to be effective for cystic fibrosis when there is no formal clinical
data to support it. This puts patients in a difficult position, as
these clinical trials are unlikely to be performed by pharmaceutical
companies because they are expensive and treat a very small, targeted
population. As such, we urge the Committee to provide sustained Federal
investment in personalized medicine, to help move this burgeoning field
forward and support the advancement of exciting scientific discoveries.
The Cystic Fibrosis Foundation has devoted our own resources to
developing treatments through drug discovery, clinical development, and
clinical care. Several of the drugs in our pipeline show remarkable
promise in clinical trials and we are increasingly hopeful that these
discoveries will bring us even closer to a cure. However, sufficient
investment in basic science, translational science, clinical research,
and drug development programs at NIH are vital to continuing these
successes not only for CF but for all rare diseases.
We urge the Committee to consider these factors as you craft the
fiscal year 2013 Labor, Health and Human Services, and Education
appropriations legislation. We stand ready to work with NIH and
congressional leaders on the challenging issues ahead. Thank you for
your consideration.
______

Prepared Statement of the Coalition for Health Funding
The Coalition for Health Funding is pleased to provide the Senate
Labor, Health and Human Services, Education and Related Agencies (LHHS)
appropriations subcommittee with a statement for the record on fiscal
year 2013 funding levels for health agencies and programs. Since 1970,
the Coalition has advocated for sufficient and sustained discretionary
funding for the public health continuum to meet the mounting and
evolving health challenges confronting the American people.
Every day, in important ways most Americans don't even realize, the
Federal Government supports public health programs that keep them safe
and secure. The agencies and programs of the LHHS: conduct health
research and discover cures; prevent disease, disability, and injury;
assure food, water, and drug safety; protect and respond in times of
crisis; educate the next generation of scientists, healthcare
providers, and public health professionals; and care for our Nation's
most vulnerable.
The Coalition's 76 national, member organizations--representing the
interests of more than 100 million patients, healthcare providers,
public health professionals, and scientists--support the belief that
the Federal Government is an essential partner with State and local
governments and the nonprofit and private sectors in improving health.
In this regard, we are very concerned that deficit reduction efforts to
date--both actual and those under consideration--have relied almost
exclusively on cuts to public health and other discretionary programs
to balance the budget. Public health programs have experienced 2
straight years of funding cuts, and are facing a looming sequester that
will cut even deeper--as much as $5.7 billion from health programs
within the subcommittee's jurisdiction.
These programs make up only a fraction of all Federal spending.
They are not the root cause of our fiscal crisis, and cutting them
further will not bring the budget into balance. On the contrary, with
greater investment, public health programs are an integral part of the
solution. Evidence abounds--from the Department of Defense to the U.S.
Chamber of Commerce--that healthy Americans are stronger on the
battlefield, have higher academic achievement, and are more productive
in school and on the job. Healthy Americans drive our economic engine,
and ultimately cost our Nation less in healthcare spending.
The Coalition realizes the pressure the Congress and the
administration face to balance the Nation's budget. However, our
Nation's health has already borne more than its fair share of the
responsibility for deficit reduction. A few weeks ago, the Coalition
was joined by more than 900 national, State, and local organizations
urging the Appropriations Committees to increase investments in public
health and other programs within the subcommittee's jurisdiction. The
following list summarizes the Coalition's fiscal year 2013 specific
funding recommendations for these public health agencies.
national institutes of health (nih)
The Coalition joins the Ad Hoc Group for Medical Research in
seeking at least $32 billion for NIH in fiscal year 2013. This funding
recommendation represents the minimum investment necessary to avoid
further loss of promising research and at the same time allows the
NIH's budget to keep pace with biomedical inflation. As the primary
Federal agency responsible for conducting and supporting medical
research, NIH drives scientific innovation and develops new and better
diagnostics, improved prevention strategies, and more effective
treatments.
NIH also contributes to the Nation's economic strength by creating
skilled, high-paying jobs; new products and industries; and improved
technologies. More than 83 percent of NIH research funding is awarded
to more than 3,000 universities, medical schools, teaching hospitals,
and other research institutions, located in every State. The Nation's
longstanding, bipartisan commitment to NIH has established the United
States as the world leader in medical research and innovation.
centers for disease control and prevention (cdc)
The Coalition joins the CDC Coalition in seeking $7.8 billion for
CDC in fiscal year 2013. This amount is representative of what CDC
needs to fulfill its core mission in fiscal year 2013; activities and
programs that are essential to protect the health of the American
people. CDC continues to be faced with unprecedented challenges and
responsibilities, ranging from chronic disease prevention, eliminating
health disparities, bioterrorism preparedness, to combating the obesity
epidemic. In addition, CDC funds community programs in injury control;
health promotion efforts in schools and workplaces; initiatives to
prevent diabetes, heart disease, cancer, stroke, and other chronic
diseases; improvements in nutrition and immunization; programs to
monitor and combat environmental effects on health; prevention programs
to improve oral health; prevention of birth defects; public health
research; strategies to prevent antimicrobial resistance and infectious
diseases; and data collection and analysis on a host of vital
statistics and other health indicators. It is notable that more than 70
percent of CDC's budget flows out to States and local health
organizations and academic institutions, many of which are currently
struggling to meet growing needs with fewer resources.
health resources and services administration (hrsa)
The Coalition joins the Friends of HRSA in seeking $7 billion for
HRSA in fiscal year 2013. HRSA operates programs in every State and
thousands of communities across the country. It is a national leader in
providing health services for individuals and families, serving as a
health safety net for the medically underserved. The requested level of
funding for fiscal year 2013 is critical to allow the agency to carry
out critical public health programs and services that reach millions of
Americans, including developing the public health and healthcare
workforce; delivering primary care services through community health
centers; improving access to care for rural communities; supporting
maternal and child healthcare programs; providing healthcare to people
living with HIV/AIDS; and many more. In the long term, much more is
needed for the agency to achieve its ultimate mission of ensuring
access to culturally competent, quality health services; eliminating
health disparities; and rebuilding the public health and healthcare
infrastructure.
substance abuse and mental health services administration (samhsa)
The Coalition joins the Mental Health Liaison Group and the
addictions community in recommending an overall funding level of $3.5
billion for SAMHSA in fiscal year 2013. According to results from a
national survey conducted by SAMHSA, 45.1 million American adults in
the United States experienced mental illness last year. However, only
two-thirds of adults in the United States with mental illness received
mental health services. In fact, suicide claims over 36,000 lives
annually, the equivalent of 94 suicides per day; 1 suicide every 15
minutes. Last year, 8.7 million adults aged 18 or older thought
seriously about committing suicide, 2.5 million made a suicide plan,
and 1.1 million attempted suicide. The funding for community mental
health services from SAMHSA has never been more critical, especially in
light of the $3.6 billion reduction in State mental health funding for
programs serving this vulnerable population.
agency for healthcare research and quality (ahrq)
The Coalition joins the Friends of AHRQ in recommending an overall
funding level of $400 million in base discretionary funding for AHRQ in
fiscal year 2013. AHRQ funds research and programs at local
universities, hospitals, and health departments that improve healthcare
quality, enhance consumer choice, advance patient safety, improve
efficiency, reduce medical errors, and broaden access to essential
services--transforming people's health in communities in every State
around the Nation. Specifically, the science funded by AHRQ provides
consumers and their healthcare professionals with valuable evidence to
make the right healthcare decisions for themselves and their families.
AHRQ's research also provides the basis for protocols that reduce
hospital-acquired infections, and improve patient confidence,
experiences, and outcomes.
The Coalition appreciates this opportunity to provide its fiscal
year 2013 funding recommendations. During the coming months, our member
organizations stand ready to work with Members of Congress in
developing a balanced approach to deficit reduction that will prevent
the harmful, indiscriminant cuts that will occur under sequestration.
______

Prepared Statement of the Coalition of Northeastern Governors
As the Subcommittee on Labor, Health and Human Services, Education,
and Related Agencies begins to develop the fiscal year 2013 Labor, HHS,
Education, and Related Agencies appropriations bill, the Coalition of
Northeastern Governors (CONEG) urges you to fund the Low Income Home
Energy Assistance Program (LIHEAP) at the most current authorized level
of $5.1 billion, with at least $4.5 billion in the core block grant
program and additional contingency funding for unforeseen emergencies.
We urge you to provide these funds in a manner consistent with the 1994
LIHEAP statute--``to assist low-income households, particularly those
with the lowest incomes that pay a high proportion of household income
for home energy, primarily in meeting their immediate home energy
needs.''
The Governors appreciate the Subcommittee's continued support for
the Low Income Home Energy Assistance Program, and recognize the
difficult fiscal challenges facing Congress this year. However, the
need that the LIHEAP program meets--immediate assistance that allows
the most the vulnerable low-income households to pay their home energy
bills--is great and continues to grow.
LIHEAP is targeted to households whose income hovers near the
Federal poverty level, which for a two-person household is less than
$15,000 per year. Over 90 percent of LIHEAP households have at least
one member defined as ``vulnerable''--elderly, disabled or a small
child. In addition, a recent National Energy Assistance Directors'
Association survey found that the number of households with veterans
receiving LIHEAP assistance has increased by more than 150 percent from
695,760 in fiscal year 2008 to 1.78 million in fiscal year 2011.
In the face of recent reductions in LIHEAP funding, the northeast
States' LIHEAP programs faced a reduction of 20 to 25 percent in their
fiscal year 2012 allocation compared to fiscal year 2011. This
reduction creates considerable pressures and challenges in stretching
the scarce LIHEAP dollars while still providing a meaningful benefit.
States have responded to the reduced LIHEAP funds in a number of ways.
For example, eligibility for LIHEAP assistance has been tightened. The
application season has been reduced. The number of households served
this season will be lower. Most critically, a number of States have had
to reduce benefits. Many northeast States have also stretched their own
limited budgets to provide millions of dollars in supplemental LIHEAP
funds. Few northeast States will have carry-forward funds at the end of
the current season. If the fiscal year 2013 appropriations are delayed,
the lack of carry-forward funds creates an additional challenge for
cold-weather States, where early winters create the need for benefits
in the fall. A funding level of $4.5 billion in the block grant program
provides the certainty that States need to plan and implement a cost-
effective program.
The threat of reduced LIHEAP funding comes as home heating oil
prices continue their steady year-to-year rise. According to the most
recent weekly price reports of the Energy Information Administration
(March 19, 2012), residential heating oil prices now exceed $4 per
gallon, and have risen steadily over the past month, even as winter
temperatures moderate. These rising energy prices continue to erode the
purchasing power of each LIHEAP dollar received by low-income
households, particularly in the Northeast, which is more dependent on
home heating fuel than any other region of the country. Almost 82
percent of the 8 million U.S. households that use heating oil to heat
their homes are located in this region, and they have limited options
to switch to lower-cost residential fuels.
At current prices, a typical LIHEAP benefit would pay for less than
30 percent of the total heating expenditure for a household using 800
gallons of heating oil during the season. Unlike most households that
heat with natural gas or electricity, households that rely upon
delivered fuels do not have the protection of a shut-off moratorium. If
a household cannot afford to purchase home heating fuel, the delivery
truck simply does not come, and the household is left in the cold.
Adequate, predictable and timely Federal funding is vital for LIHEAP to
assist these vulnerable, low-income households faced with increasing
home energy bills.
The CONEG Governors appreciate the Subcommittee's continuing
support for LIHEAP, and urge that it fund the program at $5.1 billion,
with a $4.5 billion funding level for the core LIHEAP block grant
program and additional contingency funds provided to address unforeseen
energy emergencies. An adequate and certain level of funding will help
States to provide meaningful assistance to some of the Nation's most
vulnerable low-income households as they attempt to pay their home
energy bills.
______

Prepared Statement of the Commissioned Officers Association of the U.S.
Public Health Service
The Commissioned Officers Association of the U.S. Public Health
Service, Inc. (COA), wishes to submit this statement for the record.
The Association speaks for its members, all of whom are active-duty or
retired officers of the Commissioned Corps of the U.S. Public Health
Service (USPHS).
The Association respectfully makes one request: support for a
congressionally authorized (but unfunded) workforce program to recruit
and train public health physicians, dentists, nurses, physician
assistants, and mental health experts for public service careers in the
USPHS Commissioned Corps. The program is called the United States
Public Health Sciences Track. Its annual cost is estimated at $160
million.
Background and Rationale
This program was authorized in Section 5315 of the Affordable Care
Act (Public Law 111-148), which is now before the U.S. Supreme Court.
Despite the intense controversy surrounding other aspects of this law,
there has never been, to the Association's knowledge, any opposition
expressed by any Member of Congress to the Public Health Sciences
Track. Regardless of the Court's decision, our Nation will still need a
way to replenish and grow the USPHS Commissioned Corps and its active-
duty force of 6,500 health professionals.
The Public Health Sciences Track means guaranteed jobs for all
graduates. This is because there are thousands of unfilled positions,
i.e., potential billets, for qualified clinicians who are willing to
serve as uniformed public health professionals in Indian Country
(especially Alaska and the American southwest) and in underserved urban
and rural areas in nearly every State.
USPHS health professionals serve side-by-side with Armed Forces
personnel at home and abroad, on joint training missions, and even in
forward operating bases in combat zones. USPHS psychiatric nurses have
treated injured soldiers and Marines under fire in Afghanistan. At
home, USPHS psychologists and other mental health specialists are
detailed to the Department of Defense to treat returning soldiers and
Marines suffering from traumatic brain injury and post-traumatic stress
disorder. The USPHS Commissioned Corps is a public health and national
security force multiplier.
The Public Health Sciences Track, as set forth in Section 5315 of
the ACA, would provide for 850 annual scholarships for medical, dental,
nursing, and public health students who commit to public service in the
USPHS. Such a program would be the first dedicated pipeline into the
USPHS Commissioned Corps. The law would reserve ten slots at the
Uniformed Services University of the Health Sciences (USUHS), which is
the medical school and research institute for uniformed services
personnel (Army, Navy, Air Force, Public Health Service). All the rest
would be distributed among interested schools of medicine, dentistry,
nursing, etc., based on recommendations of the U.S. Surgeon General.
Funding
The ACA provision authorizing the Public Health Sciences Track
identified an existing source of funds. Full support was to come from
the Public Health and Social Services Emergency Fund. The law directed
the DHHS Secretary to ``transfer from the Public Health and Social
Services Emergency Fund such sums as may be necessary'' (Sec. 274).
That transfer of funds transfer never occurred, and we understand it is
now precluded by language in the Continuing Resolution (CR). That is
why an appropriation is necessary to keep this program alive.
As the Association's Executive Director, I would be pleased to
expand on these points or to answer any questions.
______

Prepared Statement of the Council for Opportunity in Education
Over the last several years, our Nation has struggled to overcome
the greatest economic crisis since the Great Depression. More and more
Americans are turning to education as a means to lift their families
out of poverty and empower their local communities. The Federal TRIO
Programs, which serve approximately 800,000 low-income, potential
first-generation college graduates, presents a unique, yet ideal
mechanism to achieve our mutual goals of increased college access and
completion, enhanced employment prospects for veterans and adults
returning to the workforce and strengthened status within the global
marketplace. To that end, I am pleased to submit the following
recommendations for increases in TRIO funding.
Send Our Returning Veterans Back to the Classroom
With the winddown of overseas military conflicts, several thousand
servicemen and -women are returning home and need help to re-enter the
classroom and re-engage in civilian life and their local communities.
Yet, there are only 47 of TRIO's Veterans Upward Bound (VUB) programs.
Through an increase of $13.5 million, Congress could double the
program's capacity and allow 12,000 veterans (total) to receive TRIO
services. This is a more than worthwhile investment in those who have
sacrificed so much for our Nation.
Help More Out-of-Work Adults and Low-Wage Earners Boost Their
Employability
TRIO's Educational Opportunity Centers (EOC) target displaced and
underemployed workers and guide these prospective students through the
challenges of obtaining secondary education credentials, selecting and
enrolling in appropriate postsecondary programs and/or navigating
through the complex financial aid process. Currently, there are only
128 EOC programs supporting approximately 192,000 adult learners across
the country. By infusing just $14.9 million into the EOC program,
Congress could fund 38 additional programs--increasing the program's
reach by 30 percent to serve an additional 58,000 students--and provide
much needed relief to existing programs, which have sustained
significant funding cuts in recent years.
Increase Retention and Graduation Rates Among Low-Income College
Students
TRIO's Student Support Services (SSS) program helps low-income and
first-generation students, including students with disabilities, to
successfully begin and stay in college. Participants receive tutoring,
counseling, and remedial instruction in order to achieve their goals of
college completion. Serving nearly 203,000 students through just over
1,000 programs on college campuses across the country, SSS is ripe for
investment. By pouring $46.8 million into current programs, Congress
would allow the host colleges and universities to serve an additional
32,000 students within a matter of weeks. This would represent a 15
percent increase in the number of low-income college students served by
SSS.
Preserve Opportunity for Low-Income and Underrepresented Students to
Pursue Graduate Education
TRIO's Ronald E. McNair Postbaccalaureate Achievement program
encourages and prepares low-income, first-generation and other
underrepresented students to achieve doctoral degrees. The McNair
program provides research opportunities, faculty mentoring and other
supports necessary for such students to enter into and complete
challenging degree fields. Recently, the Department of Education (DOE)
cut funding for this program by $10 million (21 percent) and announced
an intention to fund one-third fewer programs in the pending grant
competition. By restoring this funding in fiscal year 2013, Congress
could restore services to approximately 2,000 students and allow these
programs to build upon their track record of success in producing
academics and other thought leaders in disciplines vital to our
national interest, such as engineering and mathematics.
Restore Services to Students in the Pipeline
Due to funding cuts, several thousand low-income, potential first-
generation college graduates have missed out on the opportunity to
participate in TRIO. By infusing $71.4 million into the programs, the
Congress could allow 55,000 middle and high school students to receive
services through Talent Search, Upward Bound and Upward Bound Math-
Science.
With a longstanding history of helping low-income youth and adults
become the first in their families to earn college degrees, the Federal
TRIO programs are a ready resource to meet the needs of our veterans,
adult learners, students with disabilities and other low-income
students. Even during this time of austerity, it is critically
important to make sound investments that put our Nation on a sound
economic path and strengthen communities and families. This strategy
proposes to do just that.
In addition to these funding concerns, I would request that your
subcommittee take particular action to remedy the Department of
Education's mishandling of these programs.
Imposing a Competitive Preference Priority that Moves Upward Bound
grants from many States into Illinois--and particularly into Chicago.
By adding ``competitive priorities''--and giving extra points to
institutions and agencies that addressed those priorities--in the
Upward Bound competition (and also, it is expected, in the Upward Bound
Math/Science competition), the Department intends to reward
institutions and agencies that address those priorities. The first of
three competitive priorities awards applicants an extra 5 points out of
a total possible of 125 by serving ``Persistently Lowest Achieving
Schools'' (PLAS) as defined by the Department (and not the applicant's
State). Because Upward Bound does not serve elementary school students,
and since many States labeled more elementary schools than secondary
schools as PLAS, applicants from certain States have a five point
advantage over most applications from States that concentrated on
elementary schools as PLAS. As a consequence, for example, institutions
and agencies serving almost 60 schools in Chicago qualify for the extra
five points. Meanwhile NO institutions and agencies serving schools in
Idaho qualify and only a handful of institutions in Montana and
Connecticut qualify.
The Upward Bound competition closed Friday, March 16, but it is
estimated that only about 25 percent of applications qualified for
extra points under the first competitive priority, serving PLAS. Other
applicants simply could not earn these points because there were no
nearby PLAS. It is possible that this issue also raises civil rights
concerns because among the applicants disadvantaged are those serving
schools on Indian reservations and applicants serving schools in
Southern States such as Alabama and West Virginia that have very low
numbers of qualifying PLAS.
Despite the fact that Congress provided the Department of Education
an extra year to prepare for and conduct TRIO competitions, and despite
the fact that the Appropriations Committee gave specific direction to
the Department to avoid delays in TRIO competitions in the fiscal year
2011 Omnibus, ED remains unable to announce grants in a timely fashion.
In one (of two) TRIO competitions in fiscal year 2011, grants were so
late that many expired before announcements were made. Those programs,
Educational Opportunity Centers--which help unemployed and
underemployed workers and other low-income adults get the education and
training they need to prepare for good jobs--were forced to close down.
Many educators were laid off, and many more left their employment given
the uncertainty surrounding funding continuation. It is anticipated
that this same problem will again occur all throughout the summer. The
last time an Upward Bound competition was held, 5 years ago,
applications had to be submitted in November and grant announcements
were not made until May. This year, through a series of missteps, the
Department closed and then re-opened the competition for Upward Bound
with applications not being finally due until March 16. Although
current grants to over 300 institutions and agencies will have expired
by June 1, the Department can provide no assurance that grant
notifications will be made by that time. Upward Bound staff are already
receiving termination notices, and very few colleges can plan summer
programs with no assurance that funds will be available. The situation
is compounded because--with the end of an infusion of mandatory
monies--it is known that at least 150 previously funded Upward Bound
programs will be discontinued.
These acts demonstrate a lack of due care with the Federal funds
with which your Subcommittee has entrusted the Department in the
administration of the TRIO programs. Therefore, in addition to
addressing the ever-pressing funding needs of TRIO, I respectfully
request your leadership in remedying the administrative ills noted
above.
On behalf of the low-income, first-generation students served by
TRIO, I thank you for your consideration of this testimony.
______

Prepared Statement of the COPD Foundation
summary of recommendations
The Foundation requests that the National Institutes of Health,
National Heart, Lung, and Blood Institute, National Institute of
Allergy and Infectious Diseases and National Institute on Aging,
increase the investment in Chronic Obstructive Pulmonary Disease and
that the Centers for Disease Control and Prevention initiate a Federal
partnership with the COPD community to achieve the following goals:
--$32 billion for the NIH for fiscal year 2013--that is a 4.5 percent
increase for the NIH over its fiscal year 2012 funding level;
--Promotion of basic science and clinical research related to COPD;
--Programs to attract and train the best young clinicians for the
care of individuals with COPD;
--Support for outstanding established scientists to work on problems
within the field of COPD research;
--Development of effective new therapies to prevent progression of
the disease and control symptoms of COPD; and
--Expansion of public awareness and targeted detection to promote
early diagnosis and treatment.
Mr. Chairman and members of the Subcommittee thank you for the
opportunity to submit testimony for the record on behalf of the COPD
Foundation.
The COPD Foundation has a clear mission: to develop and support
programs, which improve the quality of life through research,
education, early diagnosis, and enhanced therapy for persons whose
lives are impacted by Chronic Obstructive Pulmonary Disease (COPD). The
COPD Foundation was established to speed innovations which will make
treatments more effective and affordable. It also undertakes
initiatives that result in expanded services for COPD patients and
improves the lives of patients with COPD through research and education
that will lead to prevention and someday a cure for this disease.
copd: third leading cause of death and rising
COPD is an umbrella term used to describe progressive lung diseases
including emphysema, chronic bronchitis, refractory (non-reversible)
asthma, and some forms of bronchiectasis. This disease is characterized
by increasing breathlessness. The NIH, National Heart, Lung and Blood
Institute estimates that 12 million adults have COPD and another 12
million are undiagnosed. Smoking is not the only cause of COPD; second-
hand smoke, occupational dust and chemicals, air pollution and genetic
factors such as Alpha-1 Antitrypsin Deficiency also cause COPD. Dr.
Susan Shurin, Acting Director, of NHLBI responsible for the Learn More
Breathe Better COPD education and awareness program notes that, ``Half
of the people living with COPD don't know it even though it is
relatively simple to diagnose with spirometry.''
COPD while chronic is often characterized by exacerbations that can
cause considerable lung deterioration that possibly could be avoided
with medication compliance and education. There are 500,000 to 1
million hospitalizations for COPD each year, and because of these high
rates of hospitalizations and readmissions the Affordable Care Act
targeted COPD as an area of improvement in readmissions. Costs related
to COPD are rising and estimated to be about $50 billion per year.
A majority of patients with COPD also have at least one other
chronic condition and receive care from more than one healthcare
provider (primary care physicians, pulmonologists, nurses, or
respiratory therapists). In 2006, the COPD Foundation presented the
results of its study on co-morbidities at the American Thoracic Society
International Conference. The COPD and Co-Morbidities Survey identified
other chronic conditions and the extent of these illnesses, and also
determine use of medications for these additional illnesses. 81 percent
of the household sample with COPD described having over six co-morbid
conditions. Thus it is critical that not only do individuals with COPD
receive proper diagnosis and treatment but that it is also recognized
that they will need proper diagnosis and treatment for co-morbid
conditions that may also be chronic in nature.
Utilization of Healthcare Services.--Individuals diagnosed with
COPD and those with COPD who are undiagnosed seek treatment from
Emergency Services when they find themselves in an episode of severe
respiratory distress. (Survey: ``Confronting COPD in America'' found
that in those age 45-54, 27 percent had at least one emergency room
visit within the past year for their condition.) Common in emergency
services is to treat the patient by relieving the present distress and
discharging them with the directive to follow up with their personal
physician. Relieved that the episode is past, individuals are eager to
resume their usual schedule and are often unable to afford an office
visit or don't even have a personal physician. Thus there is no medical
follow up, leading them to repeat this scenario, requiring expensive
emergency services again, within months, weeks, or even days.
Improvement needs to be made in understanding transitions through the
healthcare delivery system while continuing to meet the immediate
clinical needs of the COPD patient.
COPD Foundation Infrastructure is built for Research.--The COPD
Foundation has worked with the FDA to establish biomarkers that will
facilitate expedited drug development. The COPD Foundation has worked
with the National Institutes of Health to encourage funding of research
that looks at the relationship of COPD and genetics while exceeding its
goal of recruiting 10,000 research subjects the largest COPD cohort
ever organized. COPDGene has enrolled more than 10,000 smokers with and
without COPD across the GOLD stages that includes traditionally
underserved populations of both Non-Hispanic whites and African-
Americans. The COPD Foundation Research Registry is a confidential
database of individuals diagnosed with COPD or at risk of developing
COPD. The Registry was established in 2007 by the COPD Foundation to
help researchers learn more about COPD and to help people interested in
COPD research find opportunities to participate. The Registry operates
under the direction of the COPD Foundation's Board of Directors and is
guided by an Oversight Committee comprised of leaders in the medical,
ethical, scientific and COPD communities and ensures the strictest
confidentiality of participant information.
the medical needs of the copd community have gone unmet
While smoking is a predominant cause of COPD it is not the only
cause. Other significant factors are second hand smoke, occupational
dusts and chemicals, air pollution, and a genetic cause called alpha-1
antitrypsin deficiency. The other leading causes of death have seen
great improvements over the past several decades. While the mortality
of COPD rose by 163 percent from 1965-1998, the mortality of coronary
heart disease decreased by 59 percent and the mortality of stroke
decreased by 64 percent.
And yet this third leading cause of death is a hidden, silent
killer. There is a lack of awareness among the public that coughing and
breathlessness is not a normal sign of aging. Those diagnosed with this
disease are quick to blame themselves and are ashamed of their disease
because of the current societal stigma. Many lack the information for
proper disease self-management, which could easily prevent
exacerbations and thusly, many hospital and emergency room visits.
Currently, the only therapy shown to improve survival is
supplemental oxygen. There are other therapies that can improve
symptoms but they do not alter the natural history of the disease.
COPD is fairly easy to detect.--In addition to symptoms of
breathlessness, cough and sputum production, spirometry is a
quantitative test that measures air volume and air flow in the lung and
is relatively easy and inexpensive to administer.
The COPD Foundation believes that significant Federal investment in
medical research is critical to improving the health of the American
people and specifically those affected with COPD. The support of this
Subcommittee has made a substantial difference in improving the
public's health and well-being. While this is by no means an exhaustive
list, the Foundation wishes to recognize and appreciate the efforts of
the National Institutes of Health in creating the COPD Clinical
Research Network, for conducting a COPD state of the science
conference, and launching a national education campaign.
Chronic disease have a profound human and economic toll on our
Nation. Nearly 125 million Americans today are living with some form of
chronic condition. The Foundation recognizes that the Centers for
Disease Control and Prevention understands that COPD is one of the only
top 10 causes of death that is on the increase, however, COPD has not
been designated the resources to be a major focus of the CDC. The
Foundation urges the Subcommittee to encourage the CDC to expand its
data collection efforts and to expand programs aimed at education and
prevention of the general public and healthcare providers.
COPD is a condition that has a high probability of improvability
via research with the potential for new evidence to improve patient
health, well being, and the quality of care.
specific areas of concern and recommendations
The Foundation requests that the National Institutes of Health,
National Heart Lung, and Blood Institute, National Institute of Allergy
and Infectious Diseases and National Institute on Aging, increase the
investment in Chronic Obstructive Pulmonary Disease and that the
Centers for Disease Control and Prevention initiate a Federal
partnership with the COPD community to achieve the following goals:
--Promotion of basic science and clinical research related to COPD;
--Programs to attract and train the best young clinicians for the
care of individuals with COPD;
--Support for outstanding established scientists to work on problems
within the field of COPD research;
--Development of effective new therapies to prevent progression of
the disease and control symptoms of COPD; and
--Expansion of public awareness and targeted detection to promote
early diagnosis and treatment.
______

Prepared Statement of the College on Problems of Drug Dependence
Mr. Chairman and Members of the Subcommittee, thank you for the
opportunity to submit testimony to the Subcommittee in support of the
National Institute on Drug Abuse. The College on Problems of Drug
Dependence (CPDD), a membership organization with over 800 members, has
been in existence since 1929. It is the longest standing group in the
United States addressing problems of drug dependence and abuse. The
organization serves as an interface among governmental, industrial and
academic communities maintaining liaisons with regulatory and research
agencies as well as educational, treatment, and prevention facilities
in the drug abuse field. CPDD also often works in collaboration with
the World Health Organization.
Drug abuse is costly to Americans; it ruins lives, while tearing at
the fabric of our society and taking a huge financial toll on our
resources. Beyond the unacceptably high rates of morbidity and
mortality, drug abuse is often implicated in family disintegration,
loss of employment, failure in school, domestic violence, child abuse,
and other crimes. Placing dollar figures on the problem; smoking,
alcohol and illegal drug use results in an exorbitant economic cost on
our nation, estimated at over $600 billion annually. We know that many
of these problems can be prevented entirely, and that the longer we can
delay initiation of any use, the more successfully we mitigate future
morbidity, mortality and economic burdens.
Over the past three decades, NIDA-supported research has
revolutionized our understanding of addiction as a chronic, often-
relapsing brain disease--this new knowledge has helped to correctly
situate drug addiction as a serious public health issue that demands
strategic solutions. By supporting research that reveals how drugs
affect the brain and behavior and how multiple factors influence drug
abuse and its consequences scholars supported by NIDA continue to
advance effective strategies to prevent people from ever using drugs
and to treat them when they cannot stop.
NIDA supports a comprehensive research portfolio that spans the
continuum of basic neuroscience, behavior and genetics research through
medications development and applied health services research and
epidemiology. While supporting research on the positive effects of
evidence-based prevention and treatment approaches, NIDA also
recognizes the need to keep pace with emerging problems. We have seen
encouraging trends--significant declines in a wide array of youth drug
use--over the past several years that we think are due, at least in
part, to NIDA's public education and awareness efforts. However, areas
of significant concern, such as prescription drug abuse, remain and we
support NIDA in its efforts to find successful approaches to these
difficult problems.
Recognizing that so many health research issues are inter-related,
CPDD requests that the subcommittee provide at least $32 billion for
the National Institutes of Health, which is a $1.3 billion or 4.3
percent increase over fiscal year 2012. This will allow NIH to keep up
with inflation. Because of the critical importance of drug abuse
research for the health and economy of our Nation, we also request that
you provide a proportionate increase for the National Institute on Drug
Abuse.
In addition, to highlight certain priority research areas within
NIDA's portfolio, we respectfully request that you include the
following language in the Committee report accompanying the fiscal year
2013 funding recommendation for the National Institute on Drug Abuse:

``Medications Development.--With the recent reduction in the
efforts of the pharmaceutical industry to develop new medications to
treat diseases of the brain, the Committee encourages NIDA to continue
to increase their efforts to develop medications to treat diseases of
addiction. Reasonable success has occurred in the past and recent
advances in knowledge support this effort.
``Translational Research.--The Committee encourages NIDA to
continue its efforts to increase our knowledge of how genetics, age,
environment and other factors affect the use of experimental drugs and
the development of addiction.
``Education.--The educational efforts of NIDA to inform the public
of the deleterious effects of abused substances and the life-
threatening dangers of drug addiction are recognized and encouraged.
Progress in this area has contributed to the decreased abuse of
nicotine and its long term medical consequences, including death.
Adolescents and returning veterans and their families are at a high
risk for drug abuse and therefore should be areas of concentration for
these educational efforts.
``Prevention and Treatment.--The Committee recognizes the reported
increase in abuse of marijuana and prescription drugs and encourages
NIDA to support innovative approaches to prevent and treat this abuse
and the resulting harmful effects. The concentration in these areas
should compliment efforts to prevent and treat addiction of all abused
substances.
``Prescription Drug Abuse.--Prescription drug abuse has been the
focus of much work by NIDA and its grantees and although significant
progress has been made, the Committee encourages NIDA to maintain its
comprehensive leadership role in the effort to halt this epidemic.
``Military Personnel, Veterans, and Their Families.--The Committee
commends NIDA for its successful efforts to coordinate and support
research with the Department of Veterans Affairs and other NIH
institutes on substance abuse and associated problems among U.S.
military personnel, veterans and their families. Many military
personnel need help confronting war-related problems including
traumatic brain injury, post-traumatic stress disorder, depression,
anxiety, sleep disturbances, and substance abuse, including tobacco,
alcohol and other drugs. Many of these problems are interconnected and
contribute to individual health and family relationship crises, yet
there has been little research on how to prevent and treat the unique
characteristics of wartime-related substance abuse issues. The
Committee encourages NIDA to continue work in this area.''

The Nation's previous investment in scientific research to further
understand the effects of abused drugs on the body has increased our
ability to prevent and treat addiction. As with other diseases, much
more needs be done to improve prevention and treatment of these
dangerous and costly diseases. Our knowledge of how drugs work in the
brain, their health consequences, how to treat people already addicted,
and what constitutes effective prevention strategies has increased
dramatically due to support of this research. However, since the number
of individuals continuing to be affected is still rising, we need to
continue the work until this disease is both prevented and eliminated
from society.
We understand that the fiscal year 2013 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 for your support for the National Institute
on Drug Abuse.
______

Prepared Statement of the Charles R. Drew University of Medicine and
Science
Mr. Chairman and members of the Subcommittee, thank you for the
opportunity to present you with testimony. The Charles Drew University
is distinctive in being the only dually designated Historically Black
Graduate Institution and Hispanic Serving Institution in the Nation. We
would like to thank you, Mr. Chairman, for the support that this
subcommittee has given to our University to produce minority health
professionals to eliminate health disparities as well as do
groundbreaking research to save lives.
The Charles Drew University is located in the Watts-Willowbrook
area of South Los Angeles. Its mission is to prepare predominantly
minority doctors and other health professionals to care for underserved
communities with compassion and excellence through education, clinical
care, outreach, pipeline programs and advanced research that makes a
rapid difference in clinical practice. The Charles Drew University has
established a national reputation for translational research that
addresses the health disparities and social issues that strike hardest
and deepest among urban and minority populations.
Health Resources and Services Administration
Title VII Health Professions Training Programs.--The health
professions training programs administered by the Health Resources and
Services Administration (HRSA) are the only Federal initiatives
designed to address the longstanding under representation of minorities
in health careers. HRSA's own report, ``The Rationale for Diversity in
the Health Professions: A Review of the Evidence,'' found that minority
health professionals disproportionately serve minority and other
medically underserved populations, minority populations tend to receive
better care from practitioners of their own race or ethnicity, and non-
English speaking patients experience better care, greater comprehension
and greater likelihood of keeping follow-up appointments when they see
a practitioner who speaks their language. Studies have also
demonstrated that when minorities are trained in minority health
professions institutions, they are significantly more likely to: (1)
serve in medically underserved areas, (2) provide care for minorities
and (3) treat low-income patients.
Minority Centers of Excellence.--The purpose of the COE program is
to assist schools, like Charles Drew University, that train minority
health professionals, by supporting programs of excellence. The COE
program focuses on improving student recruitment and performance;
improving curricula and cultural competence of graduates; facilitating
faculty and 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 2013, the funding level for COE should be $24.602 million.
Health Careers Opportunity Program.--Grants made to health
professions schools and educational entities under 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 health professions schools. For fiscal
year 2013, the HCOP funding level of $22.133 million is recommended.
National Institutes of Health
National Institute on Minority Health and Health Disparities.--The
NIMHD is charged with addressing the longstanding health status gap
between under-represented minority and non-minority populations. The
NIMHD helps health professional institutions to narrow the health
status gap by improving research capabilities through the continued
development of faculty, labs, telemedicine technology and other
learning resources. The NIMHD also supports biomedical research focused
on eliminating health disparities and developed a comprehensive plan
for research on minority health at NIH. Furthermore, the NIMHD provides
financial support to health professions institutions that have a
history and mission of serving minority and medically underserved
communities through the COE program and HCOP. For fiscal year 2013, an
increase proportional to NIH's increase is recommended for NIMHD as
well as additional FTEs.
Research Centers at Minority Institutions.--RCMI, now at NIMHD, has
a long and distinguished record of helping institutions like The
Charles Drew University develop the research infrastructure necessary
to be leaders in the area of translational research focused on reducing
health disparities research. Although NIH has received some budget
increases over the last 5 years, funding for the RCMI program has not
increased by the same rate. Therefore, the funding for this important
program grow at the same rate as NIH overall in fiscal year 2013.
Department of Health and Human Services
Office of Minority Health.--Specific programs at OMH include:
assisting medically underserved communities, supporting conferences for
high school and undergraduate students to interest them in health
careers, and supporting cooperative agreements with minority
institutions for the purpose of strengthening their capacity to train
more minorities in the health professions. For fiscal year 2013, I
recommend a funding level of $65 million for OMH to support these
critical activities.
Department of Education
Strengthening Historically Black Graduate Institutions.--The
Department of Education's Strengthening Historically Black Graduate
Institutions program (Title III, Part B, Section 326) is extremely
important to MMC and other minority serving health professions
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. In fiscal year 2013, an
appropriation of $65 million is suggested to continue the vital support
that this program provides to historically black graduate institutions.
Conclusion
Despite all the knowledge that exists about racial/ethnic, socio-
cultural and gender-based disparities in health outcomes, the gap
continues to widen. 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 preventative care and research are inaccessible
either due to distance or lack of facilities and expertise. As noted
earlier, in just one underserved area, South Los Angeles, the number
and distribution of beds, doctors, nurses and other health
professionals are as parlous as they were at the time of the Watts
Rebellion, after which the McCone Commission attributed the so-named
``Los Angeles Riots'' to poor services--particularly access to
affordable, quality healthcare. The Charles Drew University has proven
that it can produce excellent health professionals who ``get'' the
mission--years after graduation they remain committed to serving people
in the most need. But, the university needs investment and committed
increased support from Federal, State and local governments and is
actively seeking foundation, philanthropic and corporate support.
Even though institutions like The Charles Drew University are
ideally situated (by location, population, community linkages and
mission) to study conditions in which health disparities have been well
documented, research is limited by the paucity of appropriate research
facilities. With your help, the Life Sciences Research Facility will
translate insight gained through research into greater understanding of
disparities and improved clinical outcomes. Additionally, programs like
Title VII Health Professions Training programs will help strengthen and
staff facilities like our Life Sciences Research Facility.
We look forward to working with you to lessen the huge negative
impact of health disparities on our Nation's increasingly diverse
populations, the economy and the whole American community.
Mr. Chairman, thank you again for the opportunity to present
testimony on behalf of The Charles Drew University. It is indeed an
honor.
______

Prepared Statement of the Council on Social Work Education
On behalf of the Council on Social Work Education (CSWE), I am
pleased to offer this written testimony to the Senate Appropriations
Subcommittee on Labor, Health and Human Services, and Education, and
Related Agencies for inclusion in the official subcommittee record. I
will focus my testimony on the importance of fostering a skilled,
sustainable, and diverse social work workforce to meet the healthcare
needs of the Nation through professional education, training and
financial support programs for social workers at the Department of
Health and Human Services (HHS).
CSWE is a nonprofit national association representing more than
3,000 individual members and more than 650 master's and baccalaureate
programs of professional social work education. Founded in 1952, this
partnership of educational and professional institutions, social
welfare agencies, and private citizens is recognized by the Council for
Higher Education Accreditation (CHEA) as the single accrediting agency
for social work education in the United States. Social work education
focuses students on leadership and direct practice roles helping
individuals, families, groups, and communities by creating new
opportunities that empower people to be productive, contributing
members of their communities.
Recruitment and retention in social work continues to be a serious
challenge that threatens the workforce's ability to meet societal
needs. The Bureau of Labor Statistics estimates that employment for
social workers is expected to grow faster than the average for all
occupations through 2018, particularly for social workers specializing
in the aging population and working in rural areas. In addition, the
need for social workers specializing in mental health and substance use
is expected to grow by almost 20 percent more than the 2008-2018
decade.\1\
---------------------------------------------------------------------------
\1\ U.S. Bureau of Labor Statistics. 2009. Occupational Outlook
Handbook, 2010-11 Edition: Social Workers, http://data.bls.gov/cgi-bin/
print.pl/oco/ocos060.htm. Retrieved March 28, 2012.
---------------------------------------------------------------------------
CSWE understands the difficult funding decisions the Congress is
faced with this year given the fragile state of the United States
economy. In these challenging times, it is my hope that the
subcommittee will prioritize funding for health professions training in
fiscal year 2013 to help to ensure that the Nation continues to foster
a sustainable, skilled, and culturally competent workforce that will be
able to keep up with the increasing demand for social work services and
meet the unique healthcare needs of diverse communities.
health resources and services administration (hrsa) title vii and title
viii health professions programs
CSWE urges the subcommittee to provide $520 million in fiscal year
2013 for the health professions education programs authorized under
titles VII and VIII of the Public Health Service Act and administered
through HRSA. HRSA's title VII and title VIII health professions
programs represent the only Federal programs designed to train
healthcare providers in an interdisciplinary way to meet the healthcare
needs of all Americans, including the underserved and those with
special needs. These programs also serve to increase minority
representation in the healthcare workforce through targeted programs
that improve the quality, diversity, and geographic distribution of the
health professions workforce. The title VII and title VIII programs
provide loans, loan guarantees and scholarships to students, and grants
to institutions of higher education and nonprofit organizations to help
build and maintain a robust healthcare workforce. Social workers and
social work students are eligible for funding from the suite of title
VII health professions programs.
The title VII and title VIII programs were reauthorized in 2010,
which helped to improve the efficiency of the programs as well as
enhance efforts to recruit and retain health professionals in
underserved communities. Recognizing the severe shortages of mental and
behavioral health providers within the healthcare workforce, a new
title VII program was authorized in the Patient Protection and
Affordable Care Act (Public Law 111-148). The Mental and Behavioral
Health Education and Training Grants program would provide grants to
institutions of higher education (schools of social work and other
mental health professions) for faculty and student recruitment and
professional education and training. The program received first-time
funding of $10 million in the final fiscal year 2012 appropriations
bill. The President's budget request for fiscal year 2013 would reduce
funding to $5 million. CSWE urges the subcommittee to maintain funding
for this new and critically needed program at $10 million in fiscal
year 2013. This is the only program in the Federal Government that is
explicitly focused on recruitment and retention of social workers and
other mental and behavioral health professionals.
substance abuse and mental health services administration (samhsa)
minority fellowship program
The goal of the SAMHSA Minority Fellowship Program (MFP) is to
achieve greater numbers of minority doctoral students preparing for
leadership roles in the mental health and substance use fields.
According to SAMHSA, minorities make up approximately one-fourth of the
population, but only 10 percent of mental health providers come from
ethnic minority communities. CSWE is one of six grantees of this
critical program and administers funds to exceptional minority doctoral
social work students. Other grantees include national organizations
representing nursing, psychology, psychiatry, marriage and family
therapy, and professional counselors. SAMHSA makes grants to these six
organizations, who in turn recruit minority doctoral students into the
program from the six distinct professions.
CSWE urges the subcommittee to appropriate $5.7 million for the MFP
in fiscal year 2013, which is equal to the fiscal year 2012 enacted
level. The President's budget request for fiscal year 2013 proposes a
23.4 percent cut to the program, which if appropriated would
significantly reverse progress made over the last several years by
bringing funding down to the lowest level in nearly 5 years. This cut
would translate to a reduction in the number of minority mental health
professions trained to serve vulnerable populations. Each of the MFP
grantee organizations, including CSWE, would be forced to significantly
scale back the support provided to minority doctoral students. With
respect to the social work doctoral fellows, a 23 percent cut would
have the following impacts:
--The program would not have sufficient funds to cover the stipend
increase for CSWE's current class of 25 fellows and would need
to eliminate all other financial support to the fellows;
--Fellows would not have funds to attend CSWE's Annual Program
Meeting, which represents the only face-to-face meeting of
fellows from doctoral programs located in different parts of
the United States and is essential to professional development
and collaborative networking; and
--There would be no tuition support (currently set at $500 per
student) to fellows to assist them in timely degree completion.

SAMHSA BREAKDOWN OF THE MINORITY FELLOWSHIP PROGRAM FUNDING REQUEST
[This program is funded through three separate accounts within SAMHSA]
----------------------------------------------------------------------------------------------------------------
Requested President's
program fiscal year Fiscal year
funding 2013 request 2012 funding
----------------------------------------------------------------------------------------------------------------
Programs of Regional and National Significance, Center for $5,089,000 $3,755,000 $5,089,000
Mental Health Services (CMHS)..................................
Programs of Regional and National Significance, Center for 546,000 546,000 546,000
Substance Abuse Treatment (CSAT)...............................
Programs of Regional and National Significance, Center for 71,000 71,000 71,000
Substance Abuse Prevention (CSAP)..............................
-----------------------------------------------
Total, MFP funding........................................ .............. .............. 5,706,000
----------------------------------------------------------------------------------------------------------------

Since its inception, the MFP has helped support doctoral-level
professional education for more than 1,000 ethnic minority social
workers, psychiatrists, psychologists, psychiatric nurses, and family
and marriage therapists. Still, the program continues to struggle to
keep up with the demands that are plaguing these health professions.
Severe shortages of mental health professionals often arise in
underserved areas due to the difficulty of recruitment and retention in
the public sector. Nowhere are these shortages more prevalent than
within Tribal communities, where mental illness and substance use go
largely untreated and incidences of suicide continue to increase.
Studies have shown that ethnic minority mental health professionals
practice in underserved areas at a higher rate than nonminorities.
Furthermore, a direct positive relationship exists between the numbers
of ethnic minority mental health professionals and the utilization of
needed services by ethnic minorities.
Level funding is needed simply to maintain the program's current
capacities to provide education and training for minority mental health
and substance use professionals. Much work is still needed in order to
adequately address the mental health needs of minority populations;
maintaining funding for the MFP is a small step the subcommittee can
take in fiscal year 2013.
Thank you for the opportunity to express these views. Please do not
hesitate to call on CSWE should you have any questions or require
additional information.
______

Prepared Statement of the College of Veterinary Medicine, Nursing &
Allied Health, Tuskegee University
Mr. Chairman and members of the subcommittee, thank you for the
opportunity to present my views before you today. I am Dr. Tsegaye
Habtemariam, dean of the College of Veterinary Medicine, Nursing, and
Allied Health at Tuskegee University. The mission (purpose) of Research
and Advanced Studies at the College of Veterinary Medicine, Nursing &
Allied Health (CVMNAH) is to transform trainees into ambassadors of the
Tuskegee tradition to benefit man and animals. Such a tradition is
honed in the ``one medicine-one health'' concept that for decades has
guided our academic mission, to expand biosciences and create bridges
between veterinary medicine, agricultural and food sciences on one side
and human health and welfare on the other.
Mr. Chairman, I speak for our institutions, when I say that the
minority health professions institutions and the Title VII Health
Professionals Training programs address a critical national need.
Persistent and severe staffing shortages exist in a number of the
health professions, and chronic shortages exist for all of the health
professions in our Nation's most medically underserved communities.
Furthermore, even after the landmark passage of health reform, it is
important to note that our Nation's health professions workforce does
not accurately reflect the racial composition of our population. For
example while blacks represent approximately 15 percent of the U.S.
population, only 2-3 percent of the Nation's health professions
workforce is black. Mr. Chairman, I would like to share with you how
your committee can help Tuskegee continue our efforts to help provide
quality health professionals and close our Nation's health disparity
gap.
There is a well established link between health disparities and a
lack of access to competent healthcare in medically underserved areas.
As a result, it is imperative that the Federal Government continue its
commitment to minority health profession institutions and minority
health professional training programs to continue to produce healthcare
professionals committed to addressing this unmet need--even in austere
financial times.
An October 2006 study by the Health Resources and Services
Administration (HRSA)--during the Bush administration--entitled ``The
Rationale for Diversity in the Health Professions: A Review of the
Evidence'' found that minority health professionals serve minority and
other medically underserved populations at higher rates than non-
minority professionals. The report also showed that; minority
populations tend to receive better care from practitioners who
represent their own race or ethnicity, and non-English speaking
patients experience better care, greater comprehension, and greater
likelihood of keeping follow-up appointments when they see a
practitioner who speaks their language. Studies have also demonstrated
that when minorities are trained in minority health profession
institutions, they are significantly more likely to: (1) serve in rural
and urban medically underserved areas, (2) provide care for minorities
and (3) treat low-income patients.
As you are aware, Title VII Health Professions Training programs
are focused on improving the quality, geographic distribution and
diversity of the healthcare workforce in order to continue eliminating
disparities in our Nation's healthcare system. These programs provide
training for students to practice in underserved areas, cultivate
interactions with faculty role models who serve in underserved areas,
and provide placement and recruitment services to encourage students to
work in these areas. Health professionals who spend part of their
training providing care for the underserved are up to 10 times more
likely to practice in underserved areas after graduation or program
completion.
In fiscal year 2013, funding for the Title VII Health Professions
Training programs must be robust, especially the funding for the
Minority Centers of Excellence (COEs) and Health Careers Opportunity
Program (HCOPs). In addition, the funding for the National Institutes
of Health (NIH)'s National Institute on Minority Health and Health
Disparities (NIMHD), as well as the Department of Health and Human
Services (HHS)'s Office of Minority Health (OMH), should be preserved.
Minority Centers of Excellence.--COEs focus on improving student
recruitment and performance, improving curricula in cultural
competence, facilitating research on minority health issues and
training students to provide health services to minority individuals.
COEs were first established in recognition of the contribution made by
four historically black health professions institutions to the training
of minorities in the health professions. Congress later went on to
authorize the establishment of ``Hispanic'', ``Native American'' and
``Other'' Historically black COEs. For fiscal year 2013, I recommend a
funding level of $24.602 million for COEs.
Health Careers Opportunity Program (HCOP).--HCOPs provide grants
for minority and non-minority health profession institutions to support
pipeline, preparatory and recruiting activities that encourage minority
and economically disadvantaged students to pursue careers in the health
professions. Many HCOPs partner with colleges, high schools, and even
elementary schools in order to identify and nurture promising students
who demonstrate that they have the talent and potential to become a
health professional. For fiscal year 2013, I recommend a funding level
of $22.133 million for HCOPs.
National Institutes of Health
Research Centers at Minority Institutions.--The Research Centers at
Minority Institutions program (RCMI), newly moved to the National
Institute on Minority Health and Health Disparities 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, the funding for this important
program grow at the same rate as NIH overall in fiscal year 2013.
National Institute on Minority Health and Health Disparities.--The
National Institute on Minority Health and Health Disparities (NIMHD) is
charged with addressing the longstanding health status gap between
minority and nonminority populations. The NIMHD helps health
professions institutions to narrow the health status gap by improving
research capabilities through the continued development of faculty,
labs, and other learning resources. The NIMHD also supports biomedical
research focused on eliminating health disparities and develops a
comprehensive plan for research on minority health at the NIH.
Furthermore, the NIMHD provides financial support to health professions
institutions that have a history and mission of serving minority and
medically underserved communities through its Centers of Excellence
program. For fiscal year 2013, I recommend funded increases
proportional with the funding of the overall NIH, with increased FTEs.
Department of Health and Human Services
Office of Minority Health.--Specific programs at OMH include:
assisting medically underserved communities with the greatest need in
solving health disparities and attracting and retaining health
professionals; assisting minority institutions in acquiring real
property to expand their campuses and increase their capacity to train
minorities for medical careers; supporting conferences for high school
and undergraduate students to interest them in health careers, and
supporting cooperative agreements with minority institutions for the
purpose of strengthening their capacity to train more minorities in the
health professions.
The OMH has the potential to play a critical role in addressing
health disparities. For fiscal year 2013, I recommend a funding level
of $65 million for the OMH.
Department of Education
Strengthening Historically Black Graduate Institutions.--The
Department of Education's Strengthening Historically Black Graduate
Institutions (HBGI) program (Title III, Part B, Section 326) is
extremely important to AMHPS. 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. In fiscal year 2013, an
appropriation of $65 million is suggested to continue the vital support
that this program provides to historically black graduate institutions.
Mr. Chairman, please allow me to express my appreciation to you and
the members of this subcommittee. With your continued help and support,
AMHPS' member institutions and the Title VII Health Professions
Training programs and the historically black health professions schools
can help this country to overcome health disparities. Congress must be
careful not to eliminate, paralyze or stifle the institutions and
programs that have been proven to work. CVMNAH seeks to close the ever
widening health disparity gap. If this subcommittee will give us the
tools, we will continue to work toward the goal of eliminating that
disparity everyday.
Thank you, Mr. Chairman, and I welcome every opportunity to answer
questions for your records.
______

Prepared Statement of the Dystonia Medical Research Foundation
Summary of recommendations for fiscal year 2013:
--$32 billion for the National Institutes of Health (NIH) and
concurrent percentage increases across its institutes and
centers.
--Continue to support the Dystonia Coalition within the Rare Disease
Clinical Research Network (RDCRN) coordinated by the Office of
Rare Diseases Research (ORDR).
--Expand dystonia research at NIH through the National Institute on
Neurological Disorders and Stroke (NINDS), the National
Institute on Deafness and Other Communication Disorders
(NIDCD), and the National Eye Institute (NEI).
Dystonia is a neurological movement disorder characterized by
involuntary muscle spasms that cause the body to twist, repetitively
jerk, and sustain postural deformities. Focal dystonia affects specific
parts of the body, while generalized dystonia affects multiple parts of
the body at the same time. Some forms of dystonia are genetic but
dystonia can also be caused by injury or illness. Although dystonia is
a chronic and progressive disease, it does not impact cognition,
intelligence, or shorten a person's life span. Conservative estimates
indicate that between 300,000 and 500,000 individuals suffer from some
form of dystonia in North America alone. Dystonia does not
discriminate, affecting all demographic groups. There is no known cure
for dystonia and treatment options remain limited.
Although little is known regarding the causes and onset of
dystonia, two therapies have been developed and proved particularly
useful to control patients' symptoms. Botulinum toxin (Botox/Myobloc)
injections and deep brain stimulation (DBS) have shown varying degrees
of success alleviating dystonia symptoms. Until a cure is discovered,
the development of management therapies such as these remains vital,
and more research is needed to fully understand the onset and
progression of the disease in order to better treat patients.
Dystonia Research at the National Institutes of Health (NIH)
Currently, dystonia research at NIH is conducted through the
National Institutes on Neurological Disorders and Stroke (NINDS), the
National Institute on Deafness and Other Communication Disorders
(NIDCD), the National Eye Institute (NEI), and the Office of Rare
Diseases Research (ORDR).
ORDR coordinates the Rare Disease Clinical Research Network (RDCRN)
which provides support for studies on the natural history,
epidemiology, diagnosis, and treatment of rare diseases. RDCRN includes
the Dystonia Coalition, a partnership between researchers, patients,
and patient advocacy groups to advance the pace of clinical research on
cervical dystonia, blepharospasm, spasmodic dysphonia, craniofacial
dystonia, and limb dystonia. The Dystonia Coalition has made tremendous
progress in recruiting patients for clinical trials and funding four
promising studies that hold great hope for advancing understanding and
treatment of primary focal dystonias. The DMRF urges the subcommittee
to continue its support for the Dystonia Coalition within the Rare
Disease Clinical Research Network at ORDR.
The majority of dystonia research at NIH is conducted through
NINDS. NINDS has utilized a number of funding mechanisms in recent
years to study the causes and mechanisms of dystonia. These grants
cover a wide range of research including the genetics and genomics of
dystonia, the development of animal models of primary and secondary
dystonia, molecular and cellular studies in inherited forms of
dystonia, epidemiology studies, and brain imaging. The DMRF urges the
subcommittee to support NINDS in conducting and expanding critical
research on dystonia.
NIDCD and NEI also support research on dystonia. NIDCD has funded
many studies on brainstem systems and their role in spasmodic
dysphonia. Spasmodic dysphonia is a form of focal dystonia which
involves involuntary spasms of the vocal cords causing interruptions of
speech and affecting voice quality. NEI focuses some of its resources
on the study of blepharospasm. Blepharospasm is an abnormal,
involuntary blinking of the eyelids which can cause blindness due to a
patient's inability to open their eyelids. DMRF encourages partnerships
between NINDS, NIDCD and NEI to further dystonia research.
In summary, the DMRF recommends the following for fiscal year 2013:
--$32 billion for NIH and a proportional increase for its Institutes
and Centers.
--Continued support for the Dystonia Coalition within the Rare
Diseases Clinical Research Network at ORDR.
--Increased portfolio of dystonia research at NIH through NINDS,
NIDCD, NEI, and ORDR.
The Dystonia Medical Research Foundation (DMRF)
The Dystonia Medical Research Foundation was founded over 30 years
ago and has been a membership-driven organization since 1993. Since its
inception, the goals of DMRF have remained to advance research for more
effective treatments of dystonia and ultimately find a cure; to promote
awareness and education; and support the needs and well being of
affected individuals and their families.
Thank you for the opportunity to present the views of the dystonia
community, we look forward to providing any additional information.
______

Prepared Statement of the Elder Justice Coalition
The Elder Justice Coalition (EJC) thanks you for providing an
opportunity to submit testimony as you consider a fiscal year 2013
Labor-HHS, and Education appropriations bill. The EJC is a 3,000 member
strong, nonpartisan organization dedicated to advocating for funding
for the Elder Justice Act (EJA) and related elder abuse prevention
legislation. The EJA was passed over 2 years ago and while authorized
funding for the EJA is $195 million per year, for the second year in a
row, zero funds have been appropriated for the EJA. Two years later,
vulnerable older adults who should be protected by the law are
confronted with the same threats of abuse, neglect, and exploitation.
The President's fiscal year 2012 budget requested a total of $21.5
million for the EJA. We strongly supported that level last year and
continue to this year. This funding was targeted for State adult
protective services (APS) operations and the Long-Term Care Ombudsman
Program. APS workers are often the first responders to cases of abuse
and neglect. They are faced with increasing and complex caseloads yet;
there is no dedicated Federal funding stream for APS programs. The
Long-Term Care Ombudsman Program provides resident advocacy to elders
and adults with disabilities who live in long-term care settings. This
program is consistently underfunded.
According to the Department of Justice, 1 out of every 10 older
adults are victims of elder abuse. A 2011 study on elder abuse
prevalence indicated that out of 23.5 elder abuse cases, only 1 is
reported. For financial exploitation, the ratio is an astounding 43.9
to 1 reported. A 2011 study found that the annual financial loss by
victims of elder financial abuse is at least $2.9 billion, a 12 percent
increase from the $2.6 billion estimated in a similar 2009 study.
We urge you to include a minimum appropriation of $21.5 million for
the Elder Justice Act in your fiscal year 2013 Labor-HHS appropriations
bill. We feel the President's fiscal year 2013 request of $ 8 million
is simply inadequate. We ask you to consider the fact that funds we
invest in elder abuse prevention today will save Medicaid and Medicare
dollars that elder abuse victims might otherwise need.
We thank you for your consideration and please feel free to contact
me with questions or concerns.
______

Prepared Statement of the Eldercare Workforce Alliance
Mr. Chairman and Members of the Subcommittee: We are writing on
behalf of the Eldercare Workforce Alliance (EWA), which is comprised of
29 national organizations united to address the immediate and future
workforce crisis in caring for an aging America. As the Subcommittee
begins consideration of funding for programs in fiscal year 2013, the
Alliance \1\ asks that you consider $48.7 million in funding for the
geriatrics health professions and direct-care worker training programs
that are authorized under Titles VII and VIII of the Public Health
Service Act as follows:
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\1\ The positions of the Eldercare Workforce Alliance reflect a
consensus of 75 percent or more of its members. This testimony reflects
the consensus of the Alliance and does not necessarily represent the
position of individual Alliance member organizations.
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--$40.3 million for Title VII Geriatrics Health Professions Programs;
--$3.4 million for direct care workforce training; and
--$5 million for Title VIII Comprehensive Geriatric Education
Programs.
Geriatrics health profession and direct-care worker training
programs are integral to ensuring that America's healthcare workforce
is prepared to care for the Nation's rapidly expanding population of
older adults.
We appreciate President Obama's commitment to targeting resources
to the programs which are most critical to meeting our Nation's
challenges in a time of fiscal constraint. Funding included in his
fiscal year 2013 budget for the Geriatrics Health Professions programs
administered through the Health Resources and Services Administration
(HRSA) under Title VII and Title VIII of the Public Health Service Act
is one such critical target. His request represents a welcome, though
still inadequate, investment in equipping the Nation's healthcare
workforce to meet the needs of America's older adults. HRSA's budget
justification recognizes the immediacy of the eldercare workforce
crisis by identifying ``enhancing geriatric/elder care training and
expertise'' as one of their top five priorities.
At a minimum, EWA asks Congress to support the full amount of the
President's request for these programs, and to consider the importance
of the additional investments needed in order to realize the healthcare
workforce goals set forth in the recently released draft National
Action Plan on Alzheimer's and the bipartisan commitment to enhancing
the primary care workforce of which geriatrics is a part. According to
a 2008 MedPAC report, among physicians who specifically train in and
provide primary care, geriatricians spend the most time providing non-
procedural primary care with 65 percent of their payments derived from
primary care services such as office and home visits and visits to
patients in non-acute settings.\2\ Geriatrics and gerontological health
professionals typically care for the 20 percent of Medicare
beneficiaries who account for 80 percent of Medicare costs. The
Geriatrics Health Professions programs support geriatrics faculty and
programs that we need to train other members of the care team to
provide the type of multidisciplinary care that is the hallmark of
geriatrics.
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\2\ Medicare Payment Advisory Commission, Report to the Congress:
Reforming the Delivery System (Washington: MedPAC, June 2008), chap. 2,
p.34.
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In light of current fiscal constraints, EWA specifically requests
$48.7 million in funding for the following programs administered
through the Health Resources and Services Administration (HRSA) under
Title VII and VIII of the Public Health Service Act.
Title VII: Geriatrics Health Professions Appropriations Request: $40.3
Million
Title VII Geriatrics Health Professions programs are the only
Federal programs that: (1) seek to increase the number of faculty with
geriatrics expertise in a variety of disciplines; and (2) offer
critically important training for the healthcare workforce overall to
improve the quality of care for America's elders.
Geriatric Academic Career Awards (GACA).--The goal of this program
is to promote the development of academic clinician educators in
geriatrics.
--Program Accomplishments.--In Academic Year 2010-2011, the GACA
Program funded 68 full-time junior faculty awardees. These
awardees provided interdisciplinary training in geriatrics to
38,392 health professionals in clinical geriatrics; provided
interdisciplinary team training to 6,617 clinical staff in
various geriatric clinical settings; and provided geriatric
services to 57,364 geriatric patients who are underserved and
uninsured patients in acute care, geriatric ambulatory care,
long-term care, and geriatric consultation services settings.
HRSA, through the Affordable Care Act, expanded the awards to
be available to more disciples. EWA strongly supports and
requests adequate funding for future expansion. Currently, new
awardees are selected only every 5 years and to meet the need
for clinician educators in all disciplines, EWA believes that
we need to invest more in this program in order to develop
adequate numbers of faculty to provide this training.
Specifically, these academic career development awards should
be available to clinician educators annually. EWA's fiscal year
2013 request of $5.5 million includes will support current GAC
Awardees in their development as clinician educators.
Geriatric Education Centers (GEC).--The goal of the Geriatric
Education Centers is to provide quality interdisciplinary geriatric
education and training to the health professions workforce including
geriatrics specialists and non-specialists.
--Program Accomplishments.--In Academic Year 2010-2011, the 45 GEC
grantees developed and provided 2,103 education and training
offerings to health professions students, faculty, and
practitioners related to care of older adults.
Interdisciplinary education and training was provided to 10,703
interdisciplinary teams. The grantees provided education and
training to 64,414 health professions students, faculty, and
practitioners. The GECs provide much needed education and
training. As part of the ACA, Congress authorized a
supplemental grant award program that will train additional
faculty through a mini-fellowship program. The program provides
training to family caregivers and direct care workers. Our
funding request of $22.7 million includes support for the core
work of 45 GECs and $2.7 million awarded to 24 GECs that would
be funded to undertake development of mini-fellowships under
the supplemental grants program included in ACA.
Geriatric Training Program for Physicians, Dentists, (GTPD) and
Behavioral and Mental Health Professions.--The goal of the GTPD is to
increase the number and quality of clinical faculty with geriatrics and
cultural competence, including retraining mid-career faculty in
geriatrics.
--Program Accomplishments.--In Academic Year 2010-2011, 13 non-
competing continuation grants were supported. A total of 54
physicians, dentists and psychiatry fellows provided geriatric
care to 24,139 older adults across the care continuum.
Geriatric physician fellows provided healthcare to 13,788 older
adults; geriatric dental fellows provided healthcare to 4,834
older adults; and geriatric psychiatric fellows provided
healthcare to 5,516 older adults. This program supports
training additional faculty in medicine, dentistry, and
behavioral and mental health so that they have the expertise,
skills and knowledge to teach geriatrics and gerontology to the
next generation of health professionals in their disciplines.
EWA's funding request of $8.8 million will support 13
institutions to continue this important faculty development
program.
Geriatric Career Incentive Awards Program.--Congress authorized
this new program through the ACA. It offers grants to foster greater
interest among a variety of health professionals in entering the field
of geriatrics, long-term care, and chronic care management. EWA's
funding request of $3.3 million supports implementation of this new
program.
Title VII Direct-Care Worker Training Program Appropriations Request:
$3.4 million
Direct-care workers help older people carry out the basic
activities of daily living and are critical to ensuring an adequate
geriatrics workforce. More than 1 million additional direct-care
workers will be needed by 2018, according to the latest employment
projections.
Training Opportunities for Direct Care Workers.--In the ACA
Congress approved a program administered by HHS that will offer
advanced training opportunities for direct care workers. While this
vital training program was left out of President Obama's budget, EWA
believes Congress must fund it to create new employment opportunities
by offering new skills through training. EWA's funding request of $3.4
million will support the Department of Labor to establish this unique
grant program to support community colleges in increasing the
geriatrics knowledge and expertise of this workforce.
Title VIII Geriatrics Nursing Workforce Development Programs
Appropriations Request: $5 million
These programs, administered by the HRSA, are the primary source of
Federal funding for advanced education nursing, workforce diversity,
nursing faculty loan programs, nurse education, practice and retention,
comprehensive geriatric education, loan repayment, and scholarship.
Comprehensive Geriatric Education Program.--The goal of this
program is to provide quality geriatric education to individuals caring
for the elderly.
--Program Accomplishments.--In Academic Year 2010-2011, 27 non-
competing Comprehensive Geriatric Education (CGEP) grantees
provided education and training to 3,645 registered nurses,
1,238 registered nursing students, 870 direct service workers,
569 licensed practical/vocational nurses, 264 faculty and 5,344
allied health professionals. This program supports additional
training for nurses who care for the elderly; development and
dissemination of curricula relating to geriatric care; and
training of faculty in geriatrics. It also provides continuing
education for nurses practicing in geriatrics.
Traineeships for Advanced Practice Nurses.--Through the ACA, the
Comprehensive Geriatric Education Program is being expanded to include
advanced practice nurses who are pursuing long-term care,
geropsychiatric nursing or other nursing areas that specialize in care
of elderly.
EWA's funding request of $5 million supports the training of nurses
who care for older adults and offer traineeships to nurses under the
newly implemented traineeship program.
On behalf of the members of the Eldercare Workforce Alliance, we
commend you on your past support for geriatric workforce programs and
ask that you join us in supporting the geriatrics workforce at this
critical time--for all older Americans deserve quality of care, now and
in the future.
Thank you for your consideration.
______

Prepared Statement of the Federation of American Societies for
Experimental Biology
The Federation of American Societies for Experimental Biology
(FASEB) respectfully requests a fiscal year 2013 appropriation of $32
billion for the National Institutes of Health (NIH) as the first step
of a program of sustained growth that will keep pace with increasing
scientific opportunities and return to the demonstrated capacity of the
research enterprise.
As a federation of 26 scientific societies, FASEB represents more
than 100,000 life scientists and engineers, making it the largest
coalition of biomedical research associations in the United States.
FASEB's mission is to advance health and welfare by promoting progress
and education in biological and biomedical sciences, including the
research funded by NIH, through service to its member societies and
collaborative advocacy. FASEB enhances the ability of scientists and
engineers to improve--through their research--the health, well-being,
and productivity of all people.
Research funded by NIH is essential for improving health, reducing
human suffering, and protecting the Nation against new and emerging
health threats. As a result of the prior investment in medical research
at NIH, scientists have developed vaccines to protect our citizens from
cervical cancer, flu, and meningitis; increased survival rates from the
most common form of childhood leukemia, which are now at 90 percent;
and combined effective medicines and a broad base of knowledge about
lifestyle changes to reduce the death rate for heart disease by more
than 60 percent and stroke by 70 percent. Many of these advances arose
from non-medically targeted investigations designed to explain basic
molecular, cellular, and biological mechanisms.
More recently, researchers supported by NIH found that a saliva
sample from a newborn can be used to quickly and effectively detect
cytomegalovirus (CMV) infection, a major cause of hearing loss in
children. CMV is the most common infection passed by a mother to her
unborn child. As many as 30,000 children are infected with the virus at
birth; and 10 to 15 percent of them are at risk for developing hearing
loss. Monitoring infected children for signs of hearing loss as they
grow is the best way to ensure they get early treatment, but they often
show no symptoms. Better CMV screening at birth could help doctors
determine which patients to monitor for symptoms so they can be treated
as quickly as possible. NIH researchers also discovered that a
noninvasive technique that uses light therapy to selectively destroy
cancerous cells in mice without harming surrounding tissue could
eventually be used to treat tumors in humans, a process known as
photoimmunotherapy. Using photoimmunotherapy, scientists were able to
dramatically shrink tumors in mice after a single dose of infrared
light therapy. This method has the potential to replace some surgical,
radiation, and chemotherapy treatments. Last year, an international HIV
prevention trial funded by NIH was named the ``Breakthrough of the
Year'' by the journal Science. Researchers found that if HIV-infected
heterosexual individuals began taking antiretroviral medicines when
their immune systems are relatively healthy, as opposed to delaying
therapy until the disease has advanced, they are 96 percent less likely
to transmit the virus to their uninfected partners. The study
convincingly demonstrated that antiretroviral medications cannot only
treat but also prevent the transmission of HIV infection among
heterosexual individuals, adding to the existing base of public health
strategies that can be used to make a significant impact on the HIV
pandemic.
These successes are the direct result of a vigorous medical
research effort. Sustaining this robust enterprise is crucial for
meeting the known and unknown challenges that are surely coming, such
as the increasing numbers of Alzheimer's disease sufferers as the baby
boomer generation ages, the increasing incidence of obesity-associated
type 2 diabetes, and potential threats through bioterrorism.
In addition to improving health, support for medical research
contributes to the Nation's economy. Over 80 percent of NIH funds are
distributed through competitive grants to more than 300,000 scientists
who work at universities, medical schools, and other research
institutions in nearly every congressional district in the United
States. It is critically important that the Nation continue to
capitalize on previous investments to drive research progress, train
the next generation of scientists, promote economic growth, and
maintain leadership in the global innovation economy, particularly as
other countries increase their investments in scientific research.
Predictable and Sustainable Funding Will Drive Innovation and Progress
The broad program of research supported by NIH is essential for
improving our understanding of diseases and is a primary source of new
innovations in healthcare and other areas, but because of the scale,
scope, and time involved, it is the kind of investment that private
industry could not afford to undertake. Unfortunately, due to several
years of flat funding and spending cuts enacted in 2011, the NIH budget
is insufficient to fund all of the critical research that needs to be
done. Furthermore, the rising costs of research and a loss of
purchasing power in the NIH budget have led to a decrease in the number
of research grants awarded to investigators. Data \1\ from the NIH
website recently analyzed by FASEB demonstrate how difficult times have
become:
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\1\ http://www.faseb.org/
LinkClick.aspx?fileticket=aDQlNW4adp0%3d&tabid=431.
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--In constant dollars (adjusted for inflation), the fiscal year 2012
budget and the President's proposal for fiscal year 2013 are $4
billion lower than the peak year (fiscal year 2003) and at the
lowest level since fiscal year 2001.
--The number of research project grants funded by NIH has declined
every year since 2004. This trend is projected to continue in
fiscal year 2012 and fiscal year 2013, when NIH will fund 3,100
fewer grants than in fiscal year 2004.
--Success rates have fallen more than 14 percentage points in the
past decade and are expected to decline even further in fiscal
year 2012 and 2013.
This analysis clearly demonstrates that we have lost ground. If
supplemental appropriations are considered, the decline is much
greater. NIH reached a capacity of more than $35 billion in fiscal year
2010-2011. The high demand for stimulus funding, and the exceptional
research that it yielded, illustrate that the capacity of the research
system is at least $35 billion.
NIH needs sustainable and predictable budget growth in order to
continue important scientific investigations that improve the health of
all Americans. Advances in research will enhance our ability to respond
quickly to new health threats and exciting NIH initiatives currently
underway are poised to accelerate our progress in the search for cures.
It would be tragic if we could not capitalize on the many opportunities
before us. The discovery of a universal vaccine to protect adults and
children against both seasonal and pandemic flu; nanomedicine that can
target cancer cells precisely, with limited impact on healthy cells;
and development of gene chips and DNA sequencing technologies that can
predict risk for high blood pressure, kidney disease, diabetes, and
obesity are just a few of the research breakthroughs that will be
delayed if we fail to sustain the investment in NIH.
Maintaining the current level of effort requires an increase equal
to the biomedical research and development price index (BRDPI), which
is projected to be 2.8 percent for fiscal year 2013, and additional
funds are essential to take advantage of the exciting and urgent
opportunities in science and medicine available today. A 1.7 percent
increase above BRDPI could provide support for nearly 170 additional
research grants. To prevent further erosion of the Nation's capacity
for biomedical research, FASEB recommends an appropriation of at least
$32 billion for NIH in fiscal year 2013.
Thank you for the opportunity to offer FASEB's support for NIH.
______

Prepared Statement of Friends of the Health Resources and Services
Administration
On behalf of the Friends of the Health Resources and Services
Administration (HRSA), we write to respectfully request a minimum
overall funding level of $7 billion for fiscal year 2013 for HRSA. As a
national leader in providing health services for individuals and
families, HRSA, operates programs in every State, territory, and
thousands of communities across the country. The agency serves as a
health safety net for the medically underserved, including the 50
million Americans who were uninsured in 2010 and 60 million Americans
who live in neighborhoods with scarce primary healthcare services.
The Friends of HRSA is a nonprofit and non-partisan alliance of
more than 180 national organizations, collectively representing
millions of public health and healthcare professionals, academicians,
and consumers. The coalition's principal goal is to ensure that HRSA's
broad health programs have continued support in order to reach the
populations presently underserved by the Nation's patchwork of health
services.
While we recognize the reality of the current fiscal climate, our
request of $7 billion represents the minimum amount necessary for HRSA
to continue meeting the healthcare needs of the American public--
anything less will undermine the efforts of HRSA programs to improve
access to quality healthcare for millions of our Nation's most
vulnerable citizens. Additionally, the Friends of HRSA remains
concerned about the deep cuts the agency has endured over the past few
years--HRSA's discretionary budget has been reduced by more than $1.2
billion since fiscal year 2010. Cuts of this magnitude have had a
serious negative impact on the agency's ability to carry out critical
public health programs and services for millions of Americans, and as a
result, have the potential to lead to significant increased costs to
our healthcare system in the long term. Therefore, our requested level
of funding is necessary to ensure support for the continued
implementation of HRSA programs including:
--Health Professions programs that support the education and training
of primary care physicians, nurses, dentists, optometrists,
physician assistants, nurse practitioners, clinical nurse
specialists, public health personnel, mental and behavioral
health professionals, pharmacists, and other allied health
providers; improve the distribution and diversity of health
professionals in medically underserved communities and ensure a
sufficient and capable health workforce able to provide care
for all Americans and respond to the growing demands of our
aging and increasingly diverse population. In addition, the
Patient Navigator Program helps individuals in underserved
communities, who suffer disproportionately from chronic
diseases, navigate our complex health system.
--Primary Care programs that support more than 7,000 community health
centers and clinics in every State and territory, improving
access to preventive and primary care in geographically
isolated and economically distressed communities. In addition,
the health centers program targets populations with special
needs, including migrant and seasonal farm workers, homeless
individuals and families, and those living in public housing.
--Maternal and Child Health programs that include the Title V
Maternal and Child Health Block Grant, Healthy Start, and
others support a myriad of initiatives designed to promote
optimal health, reduce disparities, combat infant mortality,
prevent chronic conditions, and improve access to quality
healthcare for more than 40 million women and children,
including children with special healthcare needs.
--HIV/AIDS programs that provide assistance to metropolitan and other
areas most severely affected by the HIV/AIDS epidemic; support
comprehensive care, drug assistance and support services for
people living with HIV/AIDS; provide education and training for
health professionals treating people with HIV/AIDS; and,
address the disproportionate impact of HIV/AIDS on women and
minorities.
--Family Planning Title X services that ensure access to a broad
range of reproductive, sexual, and related preventive
healthcare for more than 5.2 million poor and low-income women,
men, and adolescents at nearly 4,400 health centers nationwide.
This program helps improve maternal and child health outcomes
and promotes healthy families.
--Rural Health programs that improve access to care for the more than
60 million Americans who live in rural areas. Rural Health
Outreach and Network Development Grants, Rural Health Research
Centers, Rural and Community Access to Emergency Devices
Program, among other programs support community-based disease
prevention and health promotion projects, help rural hospitals
and clinics implement new technologies and strategies, and
build health system capacity in rural and frontier areas.
--Special Programs that include the Organ Procurement and
Transplantation Network, the National Marrow Donor Program, the
C.W. Bill Young Cell Transplantation Program, and National Cord
Blood Inventory, which help people who need potentially life-
saving transplants by connecting patients, doctors, donors, and
researchers to the resources they need to live longer,
healthier lives.
This investment is necessary to sufficiently fund these important
HRSA services and programs that continue to face increasing demands. We
urge you to consider HRSA's role in strengthening the foundation of
health service delivery and safety net programs, which are critical
components of any comprehensive plan to secure our Nation's progress
and drive down long-term healthcare costs. By supporting HRSA today, we
can build on the successes of the past to improve the public's health
and achieve health equity through access to quality services, a skilled
health workforce, and innovative programs in the future.
The members of the Friends of HRSA thank you for considering our
request for $7 billion for HRSA in the fiscal year 2013 Labor-HHS-
Education appropriations bill and we appreciate the opportunity to
submit our recommendation to the Subcommittee.
______

Prepared Statement of the Friends of the National Institute on Aging
Senator Harkin, Senator Shelby, and members of the Subcommittee, on
behalf of the Friends of the National Institute on Aging (FoNIA) at the
National Institutes of Health (NIH), thank you for the opportunity to
provide testimony in support of the National Institute on Aging (NIA)
and to comment on the need for sustained, long-term growth in aging
research.
The FoNIA is a coalition of over 50 academic, patient-centered and
not-for-profit organizations that conduct, fund or advocate for
scientific endeavors to improve the health and quality of life for
Americans as we age. As a coalition, we support the continuation and
expansion of NIA research activities and seek to raise awareness about
important scientific progress in the area of aging research currently
sponsored by the Institute.
To ensure that progress in Nation's biomedical, social, and
behavioral research continues, the Coalition endorses the Ad Hoc Group
for Medical Research in supporting $32 billion for NIH in fiscal year
2013. Given the unique funding challenges facing the NIA, and the range
of promising scientific opportunities in the vast, diverse field of
aging research, the FoNIA ask the subcommittee to recommend that NIA
receive $1.4 billion in fiscal year 2013.
The NIA Mission
Established in 1974, NIA leads the national scientific effort to
understand the nature of aging in order to promote the health and well
being of older adults. NIA's mission consists of four components:
--Support and conduct genetic, biological, clinical, behavioral,
social, and economic research on aging.
--Foster the development of research and clinician scientists in
aging.
--Provide research resources.
--Disseminate information about aging and advances in research to the
public, healthcare professionals, and the scientific community,
among a variety of audiences.
The NIA fulfills this mission by supporting both extramural
research at universities and medical centers across the United States
and intramural research at laboratories in Baltimore and Bethesda,
Maryland.
Research Activities and Advances
Adding to its strong record of progress throughout its 38-year
history, recent NIA-supported activities and advances have contributed
to improving the health and well-being of older people worldwide. Below
is a summary of some of these most recent activities and advances.
Alzheimer's Disease
Alzheimer's disease (AD) is the most common cause of dementia in
the elderly. Between 2.6 million and 5.1 million Americans aged 65
years and older may have AD, with a predicted increase to 13.2 million
by 2050. While researchers have achieved greater understanding of the
disease, there is no cure. In light of the exploding aging population,
which will more than double between 2010 and 2050 to 88.5 million or 20
percent of the population, scientists are in a race against time to
prevent an unprecedented AD epidemic threatening our older population.
NIA is the lead Federal research agency for Alzheimer's disease
(AD). In this regard, the Institute coordinates trans-NIH AD
initiatives and encourages collaboration with other Federal agencies
and private research entities. As illustration of its leadership role,
NIA is leading the Alzheimer's Disease Research Summit on May 14 and
15, 2012 at which officials representing Federal agencies, scientific
researchers, providers, caregivers, patients and their families will
convene to develop final recommendations to the National Alzheimer's
Project Act Advisory Council.
The NIA's support of important AD research has contributed to
important recent advances. For example, the identification of relevant
Alzheimer's Disease (AD) biomarkers through the groundbreaking
Alzheimer's Disease Neuroimaging Initiative, along with a deeper
understanding of the disease's pathology and clinical course, have
facilitated the first revision of the clinical diagnostic criteria for
AD in 27 years. These new criteria address for the first time the use
of imaging and biomarkers in blood and spinal fluid, and unlike the
previous guidelines they cover the full spectrum of the disease, from
mild cognitive impairment (MCI) through clinical dementia. To expand
and intensify the translation of basic research findings into clinical
studies and human trials, NIA, the National Institute of Neurological
Diseases and Stroke, and the National Institute of Mental Health
support an AD Translational and Drug Discovery Initiative that
currently funds over 40 projects, including a number of pilot clinical
trials. In a recent, highly promising pilot trial, a nasal-spray form
of insulin delayed memory loss and preserved cognition in people with
cognitive deficits ranging from MCI to moderate AD. A larger-scale
study to confirm and extend these results is under development.
Increasing Healthy Life Span
Through its Division of Aging Biology, NIA supports research to
improve understanding of the basic biological mechanisms underlying the
process of aging and age-related diseases. The program's primary goal
is to provide the biological basis for interventions in the process of
aging, which is the major risk factor for many chronic diseases
affecting older people. Recent significant findings that could help
advance understanding of a range of chronic diseases, include the
discovery of the drug rapamycin, which has been shown to extend median
lifespan in a mouse model. Grantees supported by this program have also
identified genetic pathways that regulate the maintenance of the stem
cell microenvironment in aging tissues.
In 2011, the NIA Division of Aging Biology led the formation of the
Trans-NIH GeroScience Interest Group (GIG). This working group, which
is comprised currently of 19 NIH Institutes and Centers was formed to
encourage trans-NIH discussion and coordination of research activities
focusing on mechanisms underlying age-related changes, including those
that could lead to increased disease susceptibility (e.g. stress,
inflammation, etc.). Another major goal of the GIG is to raise
awareness both inside and outside the NIH of the relevant role aging
biology plays in the development of age-related processes and chronic
disease. To achieve this goal, the working group is planning seminars
that will feature internal and external speakers, as well as symposia
and workshops. With additional funding, the GIG could play an
instrumental role in developing trans-NIH initiatives, including
funding opportunities and Common Fund initiatives, to encourage
research on basic biology of aging and its relationship to earlier life
events, exposures, and diseases. The FoNIA believe the GIG is an
important development that will result in greater coordination of aging
research activities and resources across the NIH.
Behavioral and Social Science Research
The Division of Behavioral and Social Research Program supports
social and behavioral research to increase understanding of the aging
process at the individual, institutional, and societal levels. Research
areas include the behavioral, psychological, and social changes
individuals undergo throughout the adult lifespan; participation of
older people in the economy, families, and communities; the development
of interventions to improve the health and cognition of older adults;
and the societal impact of population aging and of trends in labor
force participation, including fiscal effects on the Medicare and
Social Security programs.
One of the Division's signature projects, the Health and Retirement
Study (HRS), is recognized as the Nation's leading source of combined
data on health and financial circumstances of Americans over age 50.
HRS data have been cited in over 1,700 scientific papers and have
informed findings regarding the effects of early-life exposures on
later-life health, variables associated with cognitive and functional
decline in later life, and trends in retirement, savings, and other
economic behaviors. It is so respected that the study is being
replicated in 30 other countries. In March 2012, HRS took an important
step forward by announcing that genetic data from approximately 13,000
individuals were posted to dbGAP, the NIH's online genetics database.
The data are comprised of approximately 2.5 million genetic markers
from each person and are immediately available for analysis by
qualified researchers. These data will enhance the ability of
researchers to track the onset and progression of diseases and
conditions affecting the elderly.
NIA also continues to support research on the economic implications
of aging and healthcare reform. In an ongoing study, the State of
Oregon randomly assigned 10,000 low-income uninsured adults to the
State's Medicaid program (out of a pool of 90,000 individuals who
applied). The initial results from this study indicate that enrollees
increased use of healthcare services and therefore program costs, but
also reported improved health and well-being and reduced financial
strain.
Funding Challenges
Despite its ability to support important research projects and
programs, the NIA faces unique funding challenges. While the current
dollars appropriated to NIA seem to have risen significantly since
fiscal year 2003, when adjusted for inflation, they have decreased
almost 18 percent in the last 9 years. Further, according to the NIH
Almanac, out of each dollar appropriated to NIH, only 3.6 cents goes
toward supporting the work of the NIA-compared to 16.5 cents to the
National Cancer Institute, 14.6 cents to the National Institute of
Allergy and Infectious Diseases, 10 cents to the National Heart, Lung
and Blood Institute, and 6.3 cents to the National Institute of
Diabetes and Digestive and Kidney Diseases. Finally, despite enacting
cost cutting measures, such as differing paylines for projects costing
above and below $500,000 and a decrease in non-competing commitments,
NIA's success rate remained below the average NIH success rate between
2008 and 2011.
The undeniable rise in the U.S. aging population is another factor
justifying the need for increasing the NIA budget. According to the
U.S. Census Bureau, the number of people age 65 and older will more
than double between 2010 and 2050 to 88.5 million or 20 percent of the
population; and those 85 and older will increase three-fold to 19
million. Aging is a major risk factor for numerous diseases and
disorders. These factors justify the need to provide NIA with $1.4
billion, an increase of $300 million over the Institute's fiscal year
2011 level, in fiscal year 2013. It is important to note that this
funding level is not only endorsed by the FoNIA and the Leadership
Conference on Aging, but also was endorsed by over 500 scientists
nationwide who signed a letter to Dr. Collins in December 2011,
requesting this amount.
Conclusion
We thank you, Mr. Chairman, and the Subcommittee for supporting the
NIA and, again, for the opportunity to express our support for the
Institute and its important research.
______

Prepared Statement of the Friends of the National Institute of Child
Health and Human Development (NICHD)
The Friends of the National Institute of Child Health and Human
Development (NICHD) is a coalition of more than 100 organizations,
representing scientists, physicians, healthcare providers, patients,
and parents, concerned with the health and welfare of women, children,
families, and people with disabilities. We are pleased to submit
testimony to support the extraordinary work of the Eunice Kennedy
Shriver National Institute of Child Health and Human Development.
We would like to urge all members of Congress to continue sustained
and predictable funding for the National Institutes of Health (NIH). To
ensure that progress in basic, translational and clinical research is
sustained, the Coalition joins the Ad Hoc Group for Medical Research in
supporting a fiscal year 2013 appropriation of at least $32 billion for
NIH.
The Coalition has a particular interest in the important research
conducted and supported by the NICHD. Since its establishment in 1963,
the NICHD has made great strides in meeting the objectives of its broad
biomedical and behavioral research mission. The NICHD mission and
portfolio includes a focus on women's health and human development,
including research on child development, before and after birth;
maternal, child, and family health; learning and language development;
reproductive biology and population issues; and medical rehabilitation.
Although the NICHD has made significant contributions to the well-
being of children, women, and families, much remains to be done. With
sufficient resources, the NICHD could build upon the promising
initiatives described in this testimony and produce new insights into
human development and solutions to health and developmental problems
for the world and for the Nation--including the families living in your
districts. For fiscal year 2013, the Friends of NICHD support an
appropriation of at least $1.37 billion for NICHD.
New Discoveries
Scientific breakthroughs supported by NICHD specifically serve to
prevent and treat many of the Nation's most devastating health
problems, such as infant mortality and low birthweight, birth defects,
intellectual and developmental disabilities, pediatric AIDS, and the
reproductive and gynecologic health of women throughout their
lifespans. Adding to its strong record of progress over the past 50
years, recent advances by the NICHD have contributed to the health and
well-being of our Nation and world. Several highlights are:
Prematurity.--Biomedical research is critically important to
understanding the causes of prematurity and developing effective
prevention and treatment methods. Prematurity rates have increased
almost 35 percent since 1981 at a cost to the Nation of $26 billion
annually--$51,600 for every infant born prematurely. Direct healthcare
costs to employers for a premature baby average $41,610, 15 times
higher than the $2,830 for a healthy, full-term delivery. A
breakthrough study conducted by NICHD last year showed a significant
reduction in preterm delivery among women with short cervixes who are
administered vaginal progesterone. The results were especially positive
in reducing births pre-28 weeks. The results of this study are expected
to save the healthcare system $500 million a year. Additional research
can help drive down our prematurity rates further, saving dollars and
lives.
Autism.--Scientists funded through an NICHD-funded Infant Brain
Imaging Study have discovered patterns of brain development in the
first 2 years of life that are distinct in children who are later
diagnosed with autism spectrum disorder (ASD). The study results show
differences in brain structure at 6 months of age, the earliest such
structural changes have been recorded in ASDs. ASDs involve
communication and social difficulties as well as repetitive behavior
and restricted interests. Many early behavioral signs of ASDs are not
apparent until the first year of age. Typically, ASDs are diagnosed at
age 3 or older. According to the U.S. Centers for Disease Control and
Prevention (CDC), ASDs affect 1 of 88 children in the United States (1
in 54 for boys).
Childhood Obesity.--According to the CDC, obesity now affects 17
percent of all children and adolescents in the United States--triple
the rate from just one generation ago and nearly one-third of all
adults are now classified as obese, a figure that has more than doubled
over the last 30 years. Health risks associated with being overweight
or obese include type 2 diabetes, high blood pressure, high
cholesterol, asthma, and arthritis, among other risks. While promoting
healthy behaviors and physical activity is critical to child health,
studies have also demonstrated that genetics could also play a factor.
NIH-supported researchers have also identified locations at two genes,
which, when mutated, appear to increase the likelihood of common
childhood obesity. Earlier studies have identified genes associated
with obesity in extremely obese youth and in adults, but the current
study is the first to identify two genes associated with the less
severe, more common form of obesity.
Cognitive Development.--NICHD sponsors research on reading and
reading disabilities, with the goal of identifying those factors that
help English speaking children, bilinguals, and children who learn
English as a second language become proficient in reading and writing
in English. In 2009, 21 percent of U.S. children spoke a language other
than English at home. According to a recent study sponsored by the
NICHD, children who grow up learning to speak two languages are better
at switching between tasks than are children who learn to speak only
one language, which serves as an indicator of executive functioning
skills such as the ability to pay attention, plan organize, and
strategize. However, the study also found that bilinguals are slower to
acquire vocabulary than are monolinguals, because bilinguals must
divide their time between two languages while monolinguals focus on
only one.
Population Research.--In late 2011, an NICHD-supported analysis of
over 5 million medical records showed that pregnant women assaulted by
an intimate partner are at increased risk of giving birth to infants at
lower birth weights. Babies born at low birth weights are at higher
risk for SIDS, heart and breathing problems, and learning disabilities.
The American College of Obstetricians and Gynecologists used this
information in developing physician training materials for screening
patients for intimate partner violence.
Future Research Opportunities
Although the studies mentioned above have unquestionably made
significant contributions to the well-being of our children and
families, there is still much to discover about ways to improve health,
learning, and quality of life. NICHD recently undertook a ``visioning''
process to identify critical scientific opportunities and goals for the
coming decade to explore how biomedical, social and behavioral research
could improve public health and prevention across its research
portfolio. We support the Institute's efforts to achieve their goals as
well as those scientific opportunities below, all of which can only be
achieved with adequate Federal investments.
Learning to Read, Write and Compute.--There is valuable research
underway at NICHD on behavioral science, genetics, trans-disciplinary
topics examining issues related to etiology, classification and
definition, and prevention and remediation of learning disabilities
(LD) impacting listening, speaking, reading, writing and math with an
emphasis on co-morbid conditions (e.g., ADHD). Because individuals with
LD continue to represent the largest population of school-age students
identified for special education services in K-12 schools and continue
to struggle to read, write and compute at the same rate as their
peers--yet individuals with LD do not have intellectual disabilities--
NICHD continues to conduct innovative research to study the
neurological processes of the brain with an integrative approach,
including the use of fMRI and MRI. Such integration in the research
includes pursuing answers to how the brain processes information
including the underlying neurological processes that support learning
to read, write and compute. NICHD's ongoing work continues to better
inform best practices to improve classroom instruction and learning so
that more struggling students successfully exit high school ready to
attend college or receive career training.
Intellectual and Developmental Disabilities.--Ongoing support of
the research in intellectual and developmental disabilities being
undertaken at the Eunice Kennedy Shriver Intellectual and Developmental
Disabilities Research Centers (IDDRC) is essential. The IDDRCs have
made outstanding contributions toward understanding the causes of a
wide range of developmental disabilities including autism, Fragile X
syndrome, Down syndrome, autism spectrum disorders (ASD), mitochondrial
and other genetic/genomic disorders and environmentally induced
disorders. IDDRCs have collaborated with each other to leverage
resources and scientific capital on such efforts as developing a shared
contact registry of individuals with Fragile X syndrome that will
become a national resource to support investigators interested in
studies involving this condition. Recent genetic and biomedical
advances over the past few years hold the promise for understanding the
threats to healthy and full development and ultimately to the
prevention and amelioration of the impact of many disabilities.
Additional resources are needed to help bring about progress in
expanding registries to include larger samples across different
disorders, support and mentor new investigators, and develop
opportunities for translational research efforts to take advantage of
recent findings.
Contraceptive Research and Development.--Through its investment in
contraceptive evaluation research, NICHD plays a key leadership role in
ensuring acceptability and effective use of existing products in
various settings and populations and in addressing behavioral issues
related to fertility and contraceptive use. Specific opportunities and
research priorities in the area of contraceptive evaluation include
evaluation of the safety and effectiveness of hormonal contraceptive
options for women who are overweight or obese. The Institute's
investment in contraceptive development research is critical for
producing new contraceptive modalities that offer couples options with
fewer side-effects and additional non-contraceptive health benefits.
Specific opportunities and research priorities in the area of
contraceptive development include the need for non-hormonal
contraception, post-coital contraception and multipurpose prevention
technologies that would prevent both pregnancy and sexually transmitted
infections.
Reproductive Sciences.--Through its investment in reproductive
science, NICHD conducts research to improve women's health by
developing innovative medical therapies and technologies and improving
existing treatment options for gynecological conditions affecting
overall health and fertility. The Institute's reproductive science
research makes a vital contribution to women's health by focusing on
serious conditions that have been overlooked and underfunded, despite
the fact that the impact many women. For example, the NICHD's Pelvic
Floor Disorders Network is conducting research to improve treatment of
extremely painful gynecological conditions that affect 25 percent of
American women. Specific opportunities and research priorities in
infertility research include the need for treatments for disorders such
as endometriosis, polycystic ovarian syndrome (PCOS) and uterine
fibroids which can prevent couples from achieving desired pregnancies.
Rehabilitation Research.--The NICHD houses the National Center for
Medical Rehabilitation Research (NCMRR). This Center fosters the
development of scientific knowledge needed to enhance the health,
productivity, independence, and quality-of-life of people with
disabilities. A primary goal of Center-supported research is to bring
the health related problems of people with disabilities to the
attention of the best scientists in order to capitalize upon the myriad
advances occurring in the biological, behavioral, and engineering
sciences.
Longitudinal Research.--NICHD's investments in longitudinal, large
scale databases, provide rich, in-depth resources for researchers
across the demographic, behavioral, social and population sciences. As
public resources, these accessible databases enable scientists
worldwide to conduct research on linkages between family, neighborhood
and school environments, socio-economic status and behaviors that
impact health outcomes in particular. Among the most important
databases are the Add Health Study, the Panel Study of Income Dynamics,
Fragile Families and Child Well Being.
Building Scientific Capacity.--Adequate levels of research require
a robust research workforce. The average investigator is in his/her
forties before receiving their first NIH grant, a huge disincentive for
students considering biomedical research as a career. Complicating
matters, there is a gap between the number of women's reproductive
health researchers being trained and the need for such research. The
NICHD-coordinated Women's Reproductive Health Research (WRHR) Career
Development program seeks to increase the number of ob-gyns conducting
scientific research in women's health in order to address this gap. To
date 170 WRHR Scholars have received faculty positions, and 7 new and
competing WRHR sites were added in 2010.
Conclusion
We deeply appreciate the consistent interest and support Congress
has shown for the NIH and NICHD. As your committee moves forward on the
Labor, HHS Appropriations bill, we urge you to provide NIH and NICHD
with funding levels that meet current needs for addressing health
issues across the lifespan. Thank you in advance for your consideration
of our views and we look forward to continuing to work with you on
these critical issues.
______

Prepared Statement of the Friends of the National Institute on Drug
Abuse
Mr. Chairman and Members of the Subcommittee, thank you for the
opportunity to submit testimony to the Subcommittee in support of the
National Institute on Drug Abuse. The Friends of the National Institute
on Drug Abuse (FON) is a coalition of over 150 scientific and
professional societies, patient groups, and other organizations
committed to, preventing and treating substance use disorders as well
as understanding their causes through the research agenda of the
National Institute on Drug Abuse (NIDA). We are pleased to provide
testimony in support of the work carried out by scholars around the
country whose work is supported by NIDA.
Drug abuse is costly to Americans; it ruins lives, while tearing at
the fabric of our society and taking a huge financial toll on our
resources. Beyond the unacceptably high rates of morbidity and
mortality, drug abuse is often implicated in family disintegration,
loss of employment, failure in school, domestic violence, child abuse,
and other crimes. Placing dollar figures on the problem; smoking,
alcohol and illegal drug use results in an exorbitant economic cost on
our Nation, estimated at over $600 billion annually. We know that many
of these problems can be prevented entirely, and that the longer we can
delay initiation of any use, the more successfully we mitigate future
morbidity, mortality and economic burdens.
Over the past three decades, NIDA-supported research has
revolutionized our understanding of addiction as a chronic, often-
relapsing brain disease--this new knowledge has helped to correctly
situate drug addiction as a serious public health issue that demands
strategic solutions. By supporting research that reveals how drugs
affect the brain and behavior and how multiple factors influence drug
abuse and its consequences, scholars supported by NIDA continue to
advance effective strategies to prevent people from ever using drugs
and to treat them when they cannot stop.
NIDA supports a comprehensive research portfolio that spans the
continuum of basic neuroscience, behavior and genetics research through
medications development and applied health services research and
epidemiology. While supporting research on the positive effects of
evidence-based prevention and treatment approaches, NIDA also
recognizes the need to keep pace with emerging problems. We have seen
encouraging trends--significant declines in a wide array of youth drug
use--over the past several years that we think are due, at least in
part, to NIDA's public education and awareness efforts. However, areas
of significant concern, such as prescription drug abuse, remain and we
support NIDA in its efforts to find successful approaches to these
difficult problems.
Recognizing that so many health research issues are inter-related,
we request that the subcommittee provide at least $32 billion for the
National Institutes of Health, which is a $1.3 billion or 4.3 percent
increase over fiscal year 2012. This will allow NIH to keep up with
inflation. Because of the critical importance of drug abuse research
for the health and economy of our Nation, we also request that you
provide a proportionate increase for the National Institute on Drug
Abuse.
In addition, to highlight certain priority research areas within
NIDA's portfolio, we respectfully request that you include the
following language in the committee report accompanying the fiscal year
2013 funding recommendation for the National Institute on Drug Abuse:

``Medications Development.--With the recent reduction in the
efforts of the pharmaceutical industry to develop new medications to
treat diseases of the brain, the Committee encourages NIDA to continue
to increase their efforts to develop medications to treat diseases of
addiction. Reasonable success has occurred in the past and recent
advances in knowledge support this effort.
``Translational Research.--The Committee encourages NIDA to
continue its efforts to increase our knowledge of how genetics, age,
environment and other factors affect the use of experimental drugs and
the development of addiction.
``Education.--The educational efforts of NIDA to inform the public
of the deleterious effects of abused substances and the life-
threatening dangers of drug addiction are recognized and encouraged.
Progress in this area has contributed to the decreased abuse of
nicotine and its long term medical consequences, including death.
Adolescents and returning veterans and their families are at a high
risk for drug abuse and therefore should be areas of concentration for
these educational efforts.
``Prevention and Treatment.--The Committee recognizes the reported
increase in abuse of marijuana and prescription drugs and encourages
NIDA to support innovative approaches to prevent and treat this abuse
and the resulting harmful effects. The concentration in these areas
should compliment efforts to prevent and treat addiction of all abused
substances.
``Prescription Drug Abuse.--Prescription drug abuse has been the
focus of much work by NIDA and its grantees and although significant
progress has been made, the Committee encourages NIDA to maintain its
comprehensive leadership role in the effort to halt this epidemic.
``Military Personnel, Veterans, and Their Families.--The Committee
commends NIDA for its successful efforts to coordinate and support
research with the Department of Veterans Affairs and other NIH
Institutes on substance abuse and associated problems among U.S.
military personnel, veterans and their families. Many military
personnel need help confronting war-related problems including
traumatic brain injury, post-traumatic stress disorder, depression,
anxiety, sleep disturbances, and substance abuse, including tobacco,
alcohol and other drugs. Many of these problems are interconnected and
contribute to individual health and family relationship crises, yet
there has been little research on how to prevent and treat the unique
characteristics of wartime-related substance abuse issues. The
Committee encourages NIDA to continue work in this area.''

Prepared Statement of the FSH Society, Inc.
Honorable Chairmen Inouye and Harkin and Ranking Members Cochran
and Shelby, thank you for the opportunity to submit this testimony.
I am Daniel Paul Perez, of Bedford, Massachusetts, President and
CEO of the FSH Society, Inc. and an individual who has lived with
facioscapulohumeral muscular dystrophy (FSHD) for 49 years. For
hundreds of thousands of men, women, and children the major consequence
of inheriting this form of muscular dystrophy is a lifelong progressive
loss of all skeletal muscles. FSHD is a crippling and life shortening
disease. No one is immune. It is both genetically and spontaneously
transmitted to children. It can affect multiple generations and entire
family constellations.
I have testified many times before Congress. When I first
testified, we did not know the mechanism of this disease. Now we do.
When I first testified, we assumed that FSHD was a rare form of
muscular dystrophy. Now we understand it to be one of the most, if not
the most, prevalent form of muscular dystrophy. Congress is responsible
for this success, through its sustaining support of the National
Institutes of Health (NIH), enactment of the Muscular Dystrophy CARE
Act and the collaborations of NIH, the Centers for Disease Control and
Prevention (CDC), patient groups, and researchers, both here and
internationally.
I am testifying in order to document this success and call on
Congress to take advantage of the system of discovery it has set in
motion.
Mechanism of FSHD Has Been Described
On August 19, 2010, Dutch and American researchers published a
paper which dramatically expanded our understanding of the mechanism of
FSHD.\1\ The front page story in the New York Times quoted the NIH
Director, Dr. Francis Collins saying, ``If we were thinking of a
collection of the genome's greatest hits, this would go on the list.''
\2\
---------------------------------------------------------------------------
\1\ Lemmers, RJ, et al, A Unifying Genetic Model for
Facioscapulohumeral Muscular Dystrophy, Science 24 September 2010: Vol.
329 no. 5999 pp. 1650-1653.
\2\ Kolata, G., Reanimated ``Junk'' DNA Is Found to Cause Disease.
New York Times, Science. Published online: August 19, 2010 http://
www.nytimes.com/2010/08/20/science/20gene.html.
---------------------------------------------------------------------------
Two months later, another paper was published that made a second
critical advance in determining the cause of FSHD.\3\ The research
shows that FSHD is caused by the inefficient suppression of a gene that
may be normally expressed only in early development.
---------------------------------------------------------------------------
\3\ Snider, L., Geng, L.N., Lemmers, R.J., Kyba, M., Ware, C.B.,
Nelson, A.M., Tawil,R., Filippova, G.N., van der Maarel, S.M.,
Tapscott, S.J., and Miller, D.G. (2010). Facioscapulohumeral dystrophy:
incomplete suppression of a retrotransposed gene. PLoS Genet. 6,
e1001181.
---------------------------------------------------------------------------
On January 17, 2012, an international team of researchers led by
Stephen J. Tapscott, M.D., Ph.D., of the Seattle Fred Hutchinson
Center's Biology Division, published a third major advance further
elucidating the mechanisms that can cause the disease genes and
proteins that damage FSHD muscle cells. The research also discovered
that one of the genes required for FSHD, called, DUX4 regulates cancer/
testis antigens.\4\ Cancer and testis antigens are abnormally expressed
in various tumor types, including melanoma and carcinomas of the
bladder, lung and liver. This allows for the potential of using these
antigens to create cancer vaccines.
---------------------------------------------------------------------------
\4\ Geng et al., DUX4 Activates Germline Genes, Retroelements, and
Immune Mediators: Implications for Facioscapulohumeral Dystrophy,
Developmental Cell (2012), doi:10.1016/j.devcel.2011.11.013.
---------------------------------------------------------------------------
This past week has brought five publications with significant
developments on FSHD. On this day, April 26, 2012, another major
breakthrough was announced. Researchers who began their careers with
FSH Society fellowships reported in Cell of an epigenetic activatory
long non-coding RNA (lncRNA) switch involved in FSHD and human genetic
disease. This opens the potential to control FSHD by going after the
master switch that regulates DUX4 and other genes that are necessary to
cause FSHD. The master switch is a non-protein encoding lncRNA that has
a normal developmental function and that can cause disease by allowing
normally quiescent genes to produce too much protein at the wrong time
and wrong place.\5\ This study published in Cell is important for
several reasons. First, it further defines a mechanism of disease that
could help explain the workings of diseases other than FSHD, including
some forms of diabetes or cancer. Second, it clarifies the mechanism at
work in FSHD and has identified specific therapeutic targets to achieve
a treatment for FSHD.
---------------------------------------------------------------------------
\5\ Cabianca et al., A Long ncRNA Links Copy Number Variation to a
Polycomb/Trithorax Epigenetic Switch in FSHD Muscular Dystrophy, Cell
(2012), doi:10.1016/j.cell.2012.03.035.
---------------------------------------------------------------------------
I am proud to say that many of these researchers have started their
efforts in FSHD with seed funding from the FSH Society and have
received continued support from the FSH Society, the National
Institutes of Health, and the Muscular Dystrophy Association and other
partners. This shows the power of the collaboration among funders,
patient groups and researchers to advance the search for cures and
treatments.
The renowned FSH Society Scientific Advisory Board (SAB) led and
chaired by M.I.T. Professor David E. Housman, Ph.D. has made great
strides in the past 20 years. FSHD had long been thought of as a
Mendelian disease caused by a defect in a single gene inherited in an
autosomal dominant fashion. Two decades of work by a small group of
patients and scientists have shown that, FSHD, is free of damage from
any protein-encoding gene on the chromosomes that define human life.
FSH Society seed funding has allowed researchers to understand how FSHD
works, first in the cell, then at the chromosome level, then at a
specific address on the chromosome called 4q35, then by discovering
that the diseases is associated with a shortening or modification of
repetitive sequences of DNA at 4q35 called D4Z4, then by studying the
expression of genes and different types of RNA messages from within
each repeat of D4Z4, and finally how D4Z4 repeat sequences regulate
gene expression and that mutations and changes of such elements can
influence the progression of a human genetic disease.
Even with these breakthroughs, much work remains to be done. Given
the recent developments in our definition of FSHD, the current
potential is even greater for intervention strategies, therapeutics,
and the planning and conducting of trials. We need to be prepared for
this new era in the science of FSHD by accelerating efforts in the
following four areas: \6\
---------------------------------------------------------------------------
\6\ 2011 FSH Society FSHD International Research Consortium, held
November 7-8, 2011 at DHHS NIH NICHD Boston Biomedical Research
Institute Senator Paul D. Wellstone MD CRC for FSHD. To read the
expanded summary and recommendations of the group see: http://
www.fshsociety.org/assets/pdf/
IRCWorkshop2011WorkingConsensusOfPrioritiesGalley.pdf.
---------------------------------------------------------------------------
Genetics/epigenetics
It is now broadly accepted that the disregulation of the expression
of D4Z4/DUX4 plays a major role in FSHD1 (FSHD1A) and FSHD2 (FSHD1B).
Additional FSHD (modifier) loci are likely to exist.
FSHD molecular networks.--The relaxation of the chromatin structure
on permissive chromosome 4 haplotypes leads to activation of downstream
molecular networks. Importantly, the upstream processes--triggering of
activation--are equally important. Detailed studies on these processes
are crucial for insight into the molecular mechanisms of FSHD
pathogenesis and may contribute to explaining the large intra- and
interfamily clinical variability. Importantly such work will lead to
intervention (possibly also prevention) targets.
Additional FSHD genes.--FSHD2 is characterized by hypomethylation
of D4Z4 on chromosome 4 as well as chromosome 10. This also leads to
bursts of DUX4 expression. Identification of the responsible factor
(gene) and molecular mechanisms is of utmost importance.
Clinical trial readiness
It is now broadly accepted that disregulation of the expression of
D4Z4/DUX4 is at the heart of FSHD1 and FSHD2. This finding opens
perspectives for intervention along different avenues.
Clinical Trial Readiness.--Intervention trials are envisaged within
the next several years. The FSHD field needs to be prepared for this
crucial step. To design and coordinate this important translational
process, it was envisaged to install an international task force
Clinical Trial Readiness (FSHD-CTR), with a proven FSHD-clinician as
leader.
Biomarkers.--Sensitive biomarkers are needed to monitor
intervention: they may also improve diagnosis.
Model systems
There are a plethora of cellular and animal models, based on
different pathogenic (candidate gene) hypotheses. Moreover, the
phenotypes are very diverse and often difficult to compare with the
human FSHD phenotype.
FSHD Model Data Base.--The importance of a systematic database was
recognized. This data base should contain detailed information on the
molecular characteristics of the model (design and phenotype).
Human pathology and bio-banking.--Importantly, this data base
should also contain well-documented muscle pathology data of patients--
astonishingly difficult to find in the literature. Human cellular
resources continuously deserve attention.
Sharing
Timely sharing of information and resources significantly
contributes to the progress in the field. There are several initiatives
that create large repositories of data and resources. Their websites
should be used for sharing of information (e.g. protocols, guide to
FSHD muscle pathology (images), model systems, contact information,
reagents, and resources).
The pace of discovery and numbers of experts in the field of
biological science and clinical medicine working on FSHD are rapidly
expanding. Many leading experts are now turning to work on FSHD not
only because it is one of the most complicated and challenging problems
seen in science, but because it represents the potential for great
discoveries, insights into stem cells and transcriptional processes and
new ways of treating multiple human diseases.
Surveillance Systems have Improved Understanding of Prevalence
The consortium, Orphanet, has issued new prevalence data for
hundreds of orphan diseases in Europe. That report ranks FSHD as the
most prevalent form of muscular dystrophy.\7\
---------------------------------------------------------------------------
\7\ Prevalence of rare diseases: Bibliographic data, Orphanet
Report Series, Rare Diseases collection, November 2011, Number 1:
Listed in alphabetical order of diseases, http://www.orpha.net/
orphacom/cahiers/docs/GB/
Prevalence_of_rare_diseases_by_alphabetical_list.pdf.
---------------------------------------------------------------------------
Likewise, the U.S. Centers for Disease Control and Prevention (CDC)
has presented new data on the prevalence of muscular dystrophies which
shows FSHD with the second highest prevalence rate 4.4/100,000 (the
first was myotonic muscular dystrophy.) \8\ \9\ This enhanced
understanding is due to Congress' foresight in charging CDC to enhance
its surveillance of muscular dystrophy. We cannot say whether FSHD is
becoming more prevalent, if the prevalence of other dystrophies such as
Duchenne's 2.1/100,000 is declining or if older information was just
inaccurate.\9\ But we can say that congressional action is producing
better information enabling all of us to make decisions.
---------------------------------------------------------------------------
\8\ Centers for Disease Control and Prevention. November 7-8, 2011,
CDC meeting ``Defining a public health approach for muscular dystrophy:
A model for conditions with high impact/low prevalence''.
\9\ Centers for Disease Control and Prevention. Prevalence of
Duchenne/Becker muscular dystrophy among males aged 5-24 years--four
States, 2007. MMWR Morb Mortal Wkly Rep. 2009 Oct 16; 58(40): 1119-22.
---------------------------------------------------------------------------
Funding Picture has Improved but More is Needed
Mr. Chairman, these major advances in scientific understanding and
epidemiological surveillance are not free. They come at a cost. Since
Congress passed the MD CARE Act, research funding at NIH for muscular
dystrophy has increased 4-fold. While FSHD research funding has
increased 12-fold during this period, the level of funding is still
exceedingly low.

[Dollars in millions]
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Fiscal Year
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2000 2001 2002 2003 2004 2005 2006 2007 2008 2009 2010 2011
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All MD.............................. $12.6 $21 $27.6 $39.1 $38.7 $39.5 $39.9 $47.2 $56 $83 $86 $75
FSHD................................ $0.4 $0.5 $1.3 $1.5 $2.2 $2.0 $1.7 $3 $3 $5 $6 $6
FSHD (percent total MD)............. 3 2 5 4 6 5 4 5 5 6 7 8
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Source: National Institutes of Health (NIH) FSHD Funding and Appropriations.
FSHD Research Dollars (in millions) and FSHD as a Percentage of Total NIH Muscular Dystrophy Funding.
Sources: NIH/OD Budget Office and NIH OCPL and NIH RCDC RePORT.

We request for fiscal year 2013, a doubling of the
facioscapulohumeral muscular dystrophy (FSHD) or facioscapulohumeral
disease research budget at the NIH to $12 million. This will allow an
expansion of the DHHS NIH Senator Paul D. Wellstone Muscular Dystrophy
Cooperative Research Centers, an increase in much needed research
awards, expansion of post-doctoral and clinical training fellowships,
and a dedicated center to design and conduct clinical trials on animal
models of FSHD. We need to translate discoveries and treatments for
FSHD that, according to Dr. Collins ``if we were thinking of a
collection of the genome's greatest hits, this would go on the list,''
\2\ can be rapidly realized if FSHD is one of the diseases that the NIH
National Center for Advancing Translational Sciences (NCATS), chooses
to work on.
Mr. Chairman, the patients and researchers of the FSH Society are
grateful for the support from Congress and the tremendous efforts of
many people at the NIH Office of the Director, the National Institute
of Arthritis and Musculoskeletal and Skin Disease, the National
Institute on Neurological Disorders and Stroke and the National
Institute for Child Health and Human Development. We are aware of the
great pressures on the Federal budget, but cutting the NIH budget and
research funding for FSHD at this time would be the wrong decision. We
have come so far with such modest funding. This is not the time to
lessen our endeavor. This is the time to fully and expeditiously
exploit the advances for which the American taxpayer has paid.
As president of a patient organization which raises about $1
million a year for research, I can tell you that the private sector
cannot touch the level of funding NIH provides. And we fully appreciate
your support.
Thank you for this opportunity to testify before your committee.
______

Prepared Statement of the Global Health Technologies Coalition
Chairman Rehberg, Ranking Member DeLauro, and members of the
Committee, thank you for the opportunity to provide testimony on the
fiscal year 2013 appropriations funding for the National Institutes of
Health (NIH) and the Centers for Disease Control and Prevention (CDC).
We appreciate your leadership in promoting the importance of
international development, in particular global health. We hope that
your support will continue. I am submitting this testimony on behalf of
the Global Health Technologies Coalition (GHTC), a group of nearly 40
nonprofit organizations working together to promote the advancement of
research and development (R&D) of new global health innovations--
including new vaccines, drugs, diagnostics, microbicides, and other
tools--to combat global health diseases. The GHTC's members strongly
believe that to meet the global health needs of tomorrow, it is
critical to invest in research today so that the most effective health
solutions are available when we need them. My testimony reflects the
needs expressed by our member organizations which include nonprofit
advocacy organizations, policy think-tanks, implementing organizations,
and many others.\1\ Also, one-third of our members are nonprofit
product development partnerships (PDPs), which work with partners in
the private biotechnology, pharmaceutical, and medical device sectors,
as well as public research institutions, academia, and nongovernmental
organizations to develop new and more effective life-saving
technologies for the world's most pressing health issues. We strongly
urge the Committee to continue its established support for global
health R&D by (1) sustaining and supporting the U.S. investment in
global health research and product development, (2) instructing the NIH
and CDC, in collaboration with other agencies involved in global
health, to continue their commitment to global health in their R&D
programs, and to document coordination efforts between agencies for the
use of Congress and the public, and (3) to encourage the newly formed
National Center for Advancing Translational Sciences (NCATS) to explore
supporting all stages of research.
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\1\ GHTC member list: http://www.ghtcoalition.org/coalition-
members.php.
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Critical need for new global health tools
Our Nation's investments have made historic strides in promoting
better health around the world: nearly 6 million people living with
HIV/AIDS now have access to life-saving medicines; new, cost-effective
tools help us diagnose diseases quicker and more efficiently than ever
before; and innovative new vaccines are making significant dents in
childhood mortality. While we must increase access to these and other
proven, existing health tools to tackle global health problems, it is
just as critical that we continue to invest in developing the next
generation of tools to stamp out disease and address current and
emerging threats. For instance, newer, more robust, and easier to use
antiretroviral drugs (ARV), particularly for infants and young
children, are needed to treat and prevent HIV, and even an AIDS vaccine
that is 50 percent effective has the potential to prevent 1 million HIV
infections every year. Drug-resistant tuberculosis (TB) is on the rise
globally, including in the United States, however the only vaccine on
the market is insufficient at 90 years old, and most therapies are more
than 50 years old, extremely toxic, and too expensive. New tools are
also urgently needed to address fatal neglected tropical diseases
(NTDs) such as sleeping sickness, for which diagnostic tools are
inadequate and the few drugs available are toxic or difficult to use.
There are many very promising technology candidates in the R&D pipeline
to address these and other health issues; however, these tools will
never be available if the support needed to continue R&D is not
supported and sustained.
Research and U.S. global health efforts
The United States is at the forefront of innovation in global
health technologies. For example, in November 2010, the NIH announced
the results of the iPrEx clinical trial, a large, multi-country
research study examining pre-exposure prophylaxis (PrEP).\2\ The study
found that a daily dose of two anti-retroviral drugs could provide an
average of 44 percent additional protection to high-risk populations
who also received a comprehensive package of HIV prevention services.
Additional studies supported by the CDC and the University of
Washington confirmed that a daily oral dose of ARV drugs used to treat
HIV infection can reduce the risk of HIV acquisition among uninfected
individuals by between 63 and 73 percent.
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\2\ iPrex trial. http://www.niaid.nih.gov/news/newsreleases/2010/
Pages/iPrEx.aspx.
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The NIH is the largest funder of global health research in the U.S.
Government, and the agency continues to demonstrate growing interest in
global health issues, particularly in the area of translational
research. NIH Director Francis Collins has made global health one of
his top five priorities for the future of the NIH, and our coalition
members have been pleased to see this implemented via the launch of a
new Center for Global Health Studies at the Fogarty International
Center, new initiatives on global health at the National Cancer
Institute, and the creation of the new National Center for Advancing
Translational Sciences (NCATS). Fogarty continues to collaborate with
the U.S. Department of State's Office of the U.S. Global AIDS
Coordinator and other agencies on the Medical Education Partnership
Initiative (MEPI) to develop, expand, and enhance models of medical
education. This includes enhancing the capacity of local individuals to
conduct research on global health diseases. Additionally, the Model
Non-Profit License Agreement for NTDs, HIV, TB, and Malaria
Technologies was created for nonprofit institutions and PDPs with a
demonstrated commitment to neglected diseases to apply for the use of
patented inventions and non-patented biological materials from the NIH
and the FDA intramural laboratories. Also very recently, a partnership
between the NIH, the FDA, and GHTC member organization BIO Ventures for
Global Health has proposed the Global Health Connector--a knowledge
sharing system for scientists to improve access to valuable compound
information and data to inform research into neglected tropical
diseases. Each of these efforts built on the historic work carried out
by the agency which contributes to improved health around the world.
With operations in more than 54 countries, the CDC is engaged in
many global health research efforts. The work of CDC scientists has led
to major advances against devastating diseases, including the
eradication of smallpox and early identification of the disease that
became known as AIDS. Although the CDC is known for its expertise and
participation in HIV, TB, and malaria programs, it also operates
several activities for neglected diseases in its National Center for
Zoonotic, Vector-Borne, and Enteric Diseases. The CDC's Center for
Global Health employs 1,100 staff members, and has people on the ground
in 55 countries. The CDC is one of many partners providing support to
research conducted on the PATH Malaria Vaccine Initiative's RTS,S
vaccine candidate, as well as vaccine research for dengue and Rift
Valley Fever. The CDC also conducts important global disease mapping
and surveillance, including operational research on integrated mapping
of NTDs over the past year. These activities also increase the
reliability of estimates of disease burden, measure impact of NTD
control efforts, and provide a planning tool for national control
programs. To combat HIV/AIDS, the CDC was involved with the ground-
breaking HIV Prevention Trials Network (HPTN) 052 study, which was the
first randomized clinical trial to show that treating HIV-infected
individuals with ART can reduce the risk of sexual transmission of HIV
to their uninfected partners. Additionally, the CDC's involvement with
expansion of rapid HIV testing has had a big impact in improving HIV/
AIDS diagnostics. All of these efforts at the CDC and NIH also align
with the new global health strategy developed by the Office of Global
Affairs at the U.S. Department of Health and Human Services.
Leveraging the private sector for innovation
The NIH, CDC, and other U.S. agencies involved in global health R&D
regularly collaborate with the private sector in developing,
manufacturing, and introducing important technologies such as those
described above through public-private partnerships, including product
development partnerships. These partnerships leverage public-sector
expertise in developing new tools, partnering with academia, large
pharmaceutical companies, the biotechnology industry, and governments
in developing countries to drive greater development of products for
neglected diseases in which private industries have not historically
invested. This unique model has generated 16 new global health products
and has enormous potential for continued success if robustly supported.
NIH Director Francis Collins has stated that such partnership is key to
the development of therapies and health tools based on NIH-funded
research.
Innovation as a smart economic choice
Global health R&D brings life-saving tools to those who need them
most, however the benefits of these efforts bring are much broader than
preventing and treating disease. Global health R&D is also a smart
economic investment in the United States, where it drives job creation,
spurs business activity, and benefits academic institutions. Biomedical
research, including global health, is a $100 billion enterprise in the
United States. In a time of global financial uncertainty, it is
important that the United States support industries, such as global
health R&D, which build the economy at home and abroad.
History has shown that investing in global health research not only
saves lives but is also a cost-effective approach to addressing health
challenges. And an investment made today can help save significant
money in the future. In the United States alone, for example, polio
vaccinations during the last 50 years have resulted in a net savings of
$180 billion, funds that would have otherwise been spent to treat those
suffering from polio. In addition, new therapies to treat drug-
resistant tuberculosis have the potential to reduce the price of
tuberculosis treatment by 90 percent and cut health system costs
significantly. The United States has made smart investments in research
in the past that have resulted in lifesaving breakthroughs for global
health diseases, as well as important advances in diseases endemic to
the United States. We must now build on those investments to turn those
discoveries into new vaccines, drugs, tests, and other tools.
Recommendations
In this time of fiscal constraint, support for global health
research that improves the lives of people around the world--while at
the same time creating jobs and spurring economic growth at home--
should unquestionably be one of the Nation's highest priorities. In
keeping with this value, the GHTC respectfully requests that the
Committee do the following:
--Sustain and support U.S. investments in global health research and
product development within both the CDC and NIH budgets. We ask
that this not come at the expense of robust funding for the
entire set of global public health accounts, all of which
complement each other and ultimately serve the common goal of
building a healthier and more prosperous world.
--Instruct all U.S. agencies in its jurisdiction to continue their
commitment to global health in their R&D programs and that
leaders at the CDC and NIH work with leaders at other U.S.
agencies to ensure that efforts in global health R&D are
coordinated, efficient, and streamlined by establishing
transparency mechanisms designed to show what global health R&D
efforts are taking place and how U.S. agencies are
collaborating with each other to make efficient use of the U.S.
investment.
--Request that relevant agencies report on their progress to Congress
and that these reports be made publicly available. Past
accounting of the health R&D activities at individual agencies,
such as the Research, Condition, and Disease Categorization at
the NIH, have been very helpful in coordinating efforts between
agencies and informing the public and such efforts should be
expanded to include neglected disease categorization and
extended to provide a comprehensive picture of this investment
from all agencies involved in global health R&D. The Committee
should request that the CDC and NIH each develop comprehensive
strategies to include global health research, product
development, and regulation in their activities, in line with
the recently released HHS Global Health Strategy.
--Request that the new National Center for Advancing Translational
Sciences (NCATS) explore the benefits of supporting all stages
of research instead of stopping at stage two, and that
neglected diseases be given the same priority as rare diseases,
in order to realize the full potential of the NCATS.
We respectfully request that the Committee consider inclusion of
the following language in the report on the fiscal year 2013 Labor,
Health and Human Services, and Education appropriations legislation:

``The Committee recognizes the urgent need for new global health
technologies in the fight against neglected diseases that
disproportionately affect low- and middle-income countries, and the
critical contribution that the NIH, CDC, and FDA make to this through
health research training operations, research, and regulatory
capabilities. The Committee also acknowledges the urgent need to
sustain and support U.S. investment in this important research by fully
funding these three agencies to carry out their work.
``New global health products such as drugs, vaccines, diagnostics,
and devices are cost-effective public health interventions that play an
important role in improving global health. The Committee understands
the positive impact that global health research and development has on
the U.S. economy through the creation of U.S. jobs and the development
of foreign markets for U.S. products. The NIH is widely recognized as
the world leader in basic research, and has supplied invaluable
breakthroughs that have led to new health tools, saving millions of
lives globally. Through its Fogarty International Center, the NIH also
harnesses its wealth of expertise to train the next generation of
health scientists. The Committee recognizes the important role that
late-stage research has in fostering the development of urgently needed
health tools, and encourages the new National Center for Advancing
Translational Sciences (NCATS) to explore supporting all stages of
research, particularly for neglected diseases.
``The Committee directs the CDC, FDA, and NIH to each develop
concrete plans to prioritize and incorporate global health research,
product development, and regulation into the U.S. global health and
development strategies. These efforts should be undertaken in line with
the new Health and Human Services (HHS) Global Health Strategy. The
Committee directs the CDC, FDA, and NIH to work with the Department of
State, the U.S. Agency for International Development, and the Office of
the U.S. Global AIDS Coordinator to ensure that these efforts are
coordinated, efficient, and streamlined across the U.S. Government. The
CDC, FDA, and NIH shall each make the documentation and results of
these efforts available to Congress and the public.''

As a leader in science and technology, the United States has the
ability to capitalize upon our strengths to help reduce illness and
death and ultimately eliminate disabling and fatal diseases for people
worldwide, contributing to a healthier world and a more stable global
economy. Sustained investments in global health research to develop new
drugs, vaccines, tests, and other health tools--combined with better
access to existing methods to prevent and treat disease--present the
United States with an opportunity to dramatically alter the course of
global health while building political and economic security across the
globe.
On behalf of the members of the GHTC, I would like to extend my
gratitude to the Committee for the opportunity to submit written
testimony for the record.
______

Prepared Statement of Goodwill Industries International
Mr. Chairman, Ranking Member, and Members of the Committee, on
behalf of Goodwill Industries International (GII), I appreciate this
opportunity to submit written testimony on Goodwill's fiscal year 2013
priorities for funding programs administered by the U.S. Departments of
Labor, Health and Human Services, and Education.
In 2011, Goodwill raised approximately $4.4 billion in its retail
stores and other social enterprises and invested 82 percent of its
privately raised revenues to supplement Federal investments in programs
that give people the skills they need to reenter the workforce.
Goodwill provided job training, employment services, and supportive
services to approximately 4.2 million people, placing nearly 190,000
people in jobs and employing more than 105,000.
Now more than ever, with unemployment slowly declining from the
highest levels experienced in a generation, local Goodwill agencies are
on the front lines of the fragile recovery assisting people with
employment barriers, including individuals with disabilities, older
workers, and Temporary Assistance to Needy Families (TANF) recipients
who are struggling to find and keep jobs during a stubbornly tight job
market.
While Goodwill is proud of these and other achievements, they are
truly the result of a public-private partnership. As the recovery from
the worst recession since the Great Depression continues and
unemployment rates slowly decline from near 10 percent, Goodwill
Industries understands the difficult challenge that appropriators face
as they struggle to reduce the deficit while stretching limited
resources to support an ever-increasing list of national priorities.
Reducing the deficit is a serious issue that will require all to make
sacrifices to address the Nation's spending problem while investing in
integrated strategies that build upon and leverage existing resources
that will address our Nation's revenue problem.
While local Goodwill agencies care about a range of Federal funding
sources, Goodwill urges appropriators to demonstrate that employment
and training programs are a top priority by providing adequate funding
for the Workforce Investment Act's adult, dislocated worker, and youth
funding streams; Community College Partnerships; and the Senior
Community Service Employment Program (SCSEP).
Goodwill understands that appropriators face a difficult challenge
in stretching limited resources to cover an increasing and dynamic
range of priorities; and Goodwill shares concerns about the Nation's
mounting debt and the deficit. This year, in particular, Goodwill is
very concerned that the Budget Control Act's sequestration provision
could result in an automatic across-the-board cut of approximately 9
percent. Over the past several years, funding for a number of
Goodwill's funding priorities has declined significantly, stretching
resources critically thin. Goodwill is very concerned that decreasing
funding by an additional 9 percent would have a drastic effect on its
programs and the people who participate in them.
workforce investment act
Funding for the Workforce Investment Act's youth, adult, dislocated
worker formulas is one of Goodwill's top funding priorities for fiscal
year 2013. The U.S. Department of Labor estimates that WIA's three core
funding streams will help more than 5.2 million people this year to
receive help finding jobs and accessing education and training that
aims to improve their future employment prospects. In 2011,
approximately 125,000 people were referred to local Goodwill agencies
for employment services through the Workforce Investment Act (WIA).
Investing 82 percent of its privately raise revenues in 2011,
Goodwill is doing all it can to supplement the Federal investment in
job training, employment services, and services that support people's
efforts to find jobs and advance in careers. In fact, some agencies
have been doing more than they can by deliberately using their reserves
in order to provide help to more people than their current revenues
support. Nevertheless, WIA funds support many agencies' efforts to
provide skills training, job placement and job retention services to
people with employment challenges including people with disabilities,
people who receive welfare, and other job seekers. In addition, several
agencies are one-stop lead operators or operators in association with
other service providers. Many agencies are also active on State and
local workforce boards, and most Goodwill agencies have people referred
to them through the workforce system.
The administration's fiscal year 2013 budget proposes approximately
$2.6 billion for WIA's three main funding streams, and an additional
$100 million to pay the U.S. Department of Labor's portion of a
Workforce Innovation Fund to ``support and test promising approaches to
training, and breaking down program silos, building evidence about
effective practices, and investing in what works.'' Goodwill believes
that a Workforce Innovation Fund is a promising idea, is very
interested in the details, and is encouraged by the administration's
efforts to increase interagency collaborations and leverage resources
provided by community-based organizations.
Goodwill continues to be alarmed by the steady erosion of funding
for WIA's adult, youth, and dislocated worker funding streams. In 2002,
when the unemployment rate was 5.8 percent, combined funding for WIA's
youth, adult, dislocated worker, and funding streams was more than
$3.67 billion. Ten years later, combined fiscal year 2012 funding for
WIA's core funding streams and the Workforce Innovation fund is $2.65
billion--more than $1 billion or 25 percent less than in 2002--yet at a
time when unemployment remains stubbornly high at more than 8 percent.
The workforce system is vastly underfunded and preservation of
WIA's formula funding streams should be a high priority. Therefore,
Goodwill urges Congress to sustain WIA's adult, dislocated worker, and
youth funding streams at current funding levels at a minimum. In
addition, Goodwill supports the administration's proposal to increase
funding for the Workforce Innovation Fund from $50 million in fiscal
year 2012 to $100 million in fiscal year 2013.
community college partnerships
Goodwill continues to hear employers express that it remains
difficult to find workers that have the skills employers seek. In
response, Goodwill launched the Community College/Career Collaboration
(C\4\) in 2009 to enhance local agencies' collaboration with community
colleges to combine their assets and resources to provide easy access
to education, job training and other supportive services to individuals
who lack a college or career credential that employers look for.
Pell grants are an important component of C\4\ because they
increase access to training and education that lead to high-growth and
good paying jobs that sustain families and build vibrant communities.
Therefore the importance of Pell grants has increased dramatically for
Goodwill. As a result, Goodwill was concerned that the fiscal year 2012
omnibus appropriations bill included provisions that reduced Pell
eligibility for many students.
As members of the Committee know, the administration's fiscal year
2013 budget proposes to slightly increase the maximum Pell Grant to
$5,635. In addition, the budget proposes to include up to $8 billion
for the U.S. Departments of Labor and Education to create a Community
College Initiative ``to support State and community college
partnerships with businesses to build the skills of American workers.''
Goodwill is intrigued by the proposal and believes that such
partnerships should leverage the expertise and resources of community-
based organizations that provide the supports students need to develop
the skills and earn the credentials that employers seek.
Goodwill urges Congress to protect Pell Grants from efforts to
further reduce eligibility for many low-income students, and approve
the President's proposal to increase the maximum Pell Grant to $5,635.
senior community service employment program (scsep)
Although the economy is now slowly starting to recover, in 2011,
millions of people--including more than 2 million who are 55 and older
were unemployed. Workers who are 55 and older have multiple barriers to
employment and will be among the last rehired as the economy improves.
The President's fiscal year 2013 budget again proposes to move SCSEP
from DOL to the Department of Health and Human Services' Administration
on Aging. Goodwill is interested in learning more about the move to HHS
and encourages Congress to debate the proposal when it considers
reauthorization of the Older Americans Act.
SCESP helps provide low-income older workers with community
services employment and private sector job placements. Goodwill is one
of the newest SCSEP grantees. In 2011, Goodwill's SCSEP participants
contributed nearly 1.4 million community service hours. Private sector
placements averaged a starting wage of $9.34 per hour. Individuals
placed in unsubsidized employment worked an average of nearly 30 hours
per week. In addition, nearly 35 percent of those placed were into
positions that offered benefits including health, vacation, and
retirement.
Goodwill urges the Subcommittee to increase SCSEP funding by 12
percent to $500 million. This increase would help absorb increased
costs and account for an increasing number of people who are over age
55. Goodwill urges Congress to discuss the proposal to move SCSEP from
DOL to HHS when it considers reauthorization of the Older Americans
Act.
conclusion
Goodwill thanks you for considering these requests, and looks
forward to working with you to help Government meet the serious
challenges our Nation faces.
______

Prepared Statement of the Health Professions and Nursing Education
Coalition
The members of the Health Professions and Nursing Education
Coalition (HPNEC) are pleased to submit this statement for the record
recommending $520 million in fiscal year 2013 for the health
professions education programs authorized under Titles VII and VIII of
the Public Health Service Act and administered through the Health
Resources and Services Administration (HRSA). HPNEC is an informal
alliance of national organizations (https://www.aamc.org/advocacy/
hpnec/members.htm) dedicated to ensuring the healthcare workforce is
trained to meet the needs of the country's growing, aging, and diverse
population.
The Title VII health professions and Title VIII nursing programs
provide education and training opportunities to a wide variety of
aspiring healthcare professionals, both preparing them for careers in
the health professions and helping bring healthcare services to our
rural and underserved communities. Authorized since 1963, the programs
are designed to help the workforce adapt to Americans' changing
healthcare needs. Through loans, loan guarantees, and scholarships to
students, as well as grants and contracts to academic institutions and
nonprofit organizations, they are the only Federal programs designed to
train providers in interdisciplinary settings to meet the needs of the
country's special and underserved populations, increase minority
representation in the healthcare workforce, and fill the gaps in the
supply of health professionals not met by traditional market forces.
While HPNEC recognizes the Subcommittee faces difficult decisions
in a constrained budget environment, a continued commitment to programs
supporting healthcare workforce development should remain a high
priority. HPNEC's recommendation of $520 million would support
continuation of all Title VII and Title VIII programs at least at their
fiscal year 2012 enacted levels, while accommodating additional
investments recommended by HRSA and HPNEC member organizations based on
assessments of the Nation's growing workforce needs.
Residents of underserved rural and urban areas alike already
struggle to access health providers. Currently, HRSA estimates that
more than 31,000 additional health practitioners are needed to
alleviate existing shortages. As the Nation's 77 million baby boomers
age, they will only require more care; coupled with the millions of
newly insured individuals entering the system, this increased demand
for health services will only exacerbate the existing deficit of health
professionals.
Failure to fully fund the Title VII and VIII programs would
jeopardize activities to fill these vacancies and to prepare health
professionals: to coordinate care for the Nation's expanding elderly
population; to meet the unique needs of sick and ailing children; to
practice in rural and other underserved communities; and to improve the
diversity and cultural competence of the workforce. Given the
synergistic nature of the programs, significant cuts to or elimination
of any of the Title VII and Title VIII programs may also reverse the
progress to date in mitigating such challenges.
The Title VII and Title VIII programs can be considered in seven
general categories:
--The Primary Care Medicine and Oral Health Training programs support
education and training of primary care professionals to improve
access and quality of healthcare in underserved areas. Two-
thirds of Americans interact with a primary care provider every
year. Approximately one-half of primary care providers trained
through these programs work in underserved areas, compared to
10 percent of those trained in other programs. The General
Pediatrics, General Internal Medicine, and Family Medicine
programs provide critical funding for primary care physician
training in community-based settings and support a range of
initiatives, including medical student and residency training,
faculty development, and the development of academic
administrative units. The primary care cluster also provides
grants for Physician Assistant programs to encourage and
prepare students for primary care practice in rural and urban
Health Professional Shortage Areas. The General Dentistry,
Pediatric Dentistry, and Public Health Dentistry programs
provide grants to dental schools and hospitals to create or
expand primary care and public health dental residency training
programs.
--Because much of the Nation's healthcare is delivered in remote
areas, the Interdisciplinary, Community-Based Linkages cluster
supports community-based training of health professionals.
These programs are designed to encourage health professionals
to return to such settings after completing their training and
to encourage collaboration between two or more disciplines. The
Area Health Education Centers (AHECs) offer clinical training
opportunities to health professions and nursing students in
rural and other underserved communities by extending the
resources of academic health centers to these areas. AHECs,
which leverage State and local matching funds, form networks of
health-related institutions to provide education services to
students, faculty and practitioners. Geriatric Health
Professions programs support geriatric faculty fellowships, the
Geriatric Academic Career Award, and Geriatric Education
Centers, all designed to bolster the number and quality of
healthcare providers caring for older generations. The Graduate
Psychology Education program, which supports interdisciplinary
training of doctoral-level psychology students with other
health professionals, provides mental and behavioral health
services to underserved populations (i.e., older adults,
children, chronically ill, and victims of abuse and trauma,
including returning military personnel and their families),
especially in rural and urban communities. The Mental and
Behavioral Health Education and Training Grant Program supports
the training of psychologists, social workers, and child and
adolescent professionals. These programs together work to close
the gap in access to quality mental and behavioral healthcare
services by increasing the number of trained mental and
behavioral health providers since 2002.
--The Minority and Disadvantaged Health Professionals Training
cluster helps improve healthcare access in underserved areas
and the representation of minority and disadvantaged
individuals in the health professions. Minority Centers of
Excellence support increased research on minority health
issues, establishment of an educational pipeline, and the
provision of clinical opportunities in community-based health
facilities. The Health Careers Opportunity Program seeks to
improve the development of a competitive applicant pool through
partnerships with local educational and community
organizations. The Faculty Loan Repayment and Faculty
Fellowship programs provide incentives for schools to recruit
underrepresented minority faculty. The Scholarships for
Disadvantaged Students make funds available to eligible
students from disadvantaged backgrounds who are enrolled as
full-time health professions students.
--The Health Professions Workforce Information and Analysis program
provides grants to institutions to collect and analyze data to
advise future decisionmaking on the health professions and
nursing programs. The Health Professions Research and Health
Professions Data programs have developed valuable, policy-
relevant studies on the distribution and training of health
professionals, including the Eighth National Sample Survey of
Registered Nurses, the Nation's most extensive and
comprehensive source of statistics on registered nurses.
Reflecting the need for better health workforce data to inform
both public and private decisionmaking, the National Center for
Workforce Analysis serves as a source of such analyses.
--The Public Health Workforce Development programs help increase the
number of individuals trained in public health, identify the
causes of health problems, and respond to such issues as
managed care, new disease strains, food supply, and
bioterrorism. The Public Health Traineeships and Public Health
Training Centers seek to alleviate the critical shortage of
public health professionals by providing up-to-date training
for current and future public health workers, particularly in
underserved areas. Preventive Medicine Residencies, which
receive minimal funding through Medicare GME, provide training
in the only medical specialty that teaches both clinical and
population medicine to improve community health. This cluster
also includes a focus on loan repayment as an incentive for
health professionals to practice in disciplines and settings
experiencing shortages. The Pediatric Subspecialty Loan
Repayment Program offers loan repayment for pediatric medical
subspecialists, pediatric surgical specialists, and child and
adolescent mental and behavioral health specialists, in
exchange for service in underserved areas.
--The Nursing Workforce Development programs under Title VIII provide
training for entry-level and advanced degree nurses to improve
the access to, and quality of, healthcare in underserved areas.
These programs provide the largest source of Federal funding
for nursing education, providing loans, scholarships,
traineeships, and programmatic support that, between fiscal
year 2005 and 2010, supported over 400,000 nurses and nursing
students as well as numerous academic nursing institutions and
healthcare facilities. Each year, nursing schools turn away
tens of thousands of qualified applications at all degree
levels due to an insufficient number of faculty, clinical
sites, classroom space, clinical preceptors, and budget
constraints. At the same time, the need for nursing services
and licensed, registered nurses is expected to increase
significantly over the next 20 years. The Advanced Education
Nursing program awards grants to train a variety of nurses with
advanced education, including clinical nurse specialists, nurse
practitioners, certified nurse-midwives, nurse anesthetists,
public health nurses, nurse educators, and nurse
administrators. Workforce Diversity grants support
opportunities for nursing education for students from
disadvantaged backgrounds through scholarships, stipends, and
retention activities. Nurse Education, Practice, and Retention
grants help schools of nursing, academic health centers, nurse-
managed health centers, State and local governments, and other
healthcare facilities to develop programs that provide nursing
education, promote best practices, and enhance nurse retention.
The Loan Repayment and Scholarship Program repays up to 85
percent of nursing student loans and offers full-time and part-
time nursing students the opportunity to apply for scholarship
funds in exchange for 2 years of practice in a designated
nursing shortage area. The Comprehensive Geriatric Education
grants are used to train RNs who will provide direct care to
older Americans, develop and disseminate geriatric curriculum,
train faculty members, and provide continuing education. The
Nurse Faculty Loan program provides a student loan fund
administered by schools of nursing to increase the number of
qualified nurse faculty.
--The loan programs under Student Financial Assistance support
financially disadvantaged health professions students. The
Nursing Student Loan (NSL) is for undergraduate and graduate
nursing students with a preference for those with the greatest
financial need. The Primary Care Loan (PCL) program provides
loans in return for dedicated service in primary care. The
Health Professional Student Loan (HPSL) program provides loans
for financially needy health professions students based on
institutional determination. These programs are funded out of
each institution's revolving fund and do not receive Federal
appropriations. The Loans for Disadvantaged Students program
provides grants to institutions to make loans to health
professions students from disadvantaged backgrounds.
By improving the supply, distribution, and diversity of the
Nation's healthcare professionals, the Title VII and Title VIII
programs not only prepare aspiring professionals to meet the Nation's
workforce needs, but also help to improve access to care across all
populations. Further, with the Bureau of Labor Statistics projecting
that the healthcare industry will generate 3.2 million jobs through
2018 (more than any other industry), these programs can help
individuals in reaching their career goals and communities in filling
their health needs. The multi-year nature of health professions
education and training, coupled with provider shortages across many
disciplines and in many communities, necessitate a strong, continued,
and reliable commitment to the Title VII and Title VIII programs.
While HPNEC members understand the immense fiscal pressures facing
the Subcommittee, we respectfully urge support for $520 million for the
Title VII and VIII programs to ensure the next generation of health
professionals is equipped to address the Nation's healthcare
complexities. We look forward to working with the Subcommittee to
prioritize the health professions programs in fiscal year 2013 and into
the future.
______

Prepared Statement of the Harm Reduction Coalition
We thank you for the opportunity to submit testimony regarding
fiscal year 2013 Appropriations. Our testimony focuses on the urgency
of scaling up Federal overdose prevention efforts.
The Centers for Disease Control and Prevention (CDC) reports that
``Drug overdose death rates in the United States have more than tripled
since 1990 and have never been higher. In 2008, more than 36,000 people
died from drug overdoses, and most of these deaths were caused by
prescription drugs . . . there is currently a growing, deadly epidemic
of prescription painkiller abuse . . . the misuse and abuse of
prescription painkillers was responsible for more than 475,000
emergency department visits in 2009, a number that doubled in just 5
years.''
In a recent CDC Morbidity and Mortality Weekly Report (MMWR),
findings ``suggest that distribution of naloxone and training in its
administration might have prevented numerous deaths from opioid
overdoses . . . To address the substantial increases in opioid-related
drug overdose deaths, public health agencies could consider
comprehensive measures that include teaching laypersons how to respond
to overdoses and administer naloxone to those in need.''
Naloxone is a prescription medication and opioid antidote which
effectively reverses the effects of an opioid overdose. Within moments
of its administration, naloxone restores breathing to a normal rate.
There is no potential for abuse of naloxone and it will cause no effect
in a person who has not taken opioids. However despite the powerful
life-saving properties of naloxone, it is underutilized. Many health
professionals lack awareness of the value of layperson-administered
naloxone, and do not prescribe it to their patients for whom they have
prescribed opioids.
Broader recognition of the signs and symptoms of an overdose--and
knowledge of how to respond (e.g., rescue breathing, administering
naloxone, calling emergency services, etc.)--are essential to saving
lives. HHS, the Department of Justice, and other agencies have been
working to address prescription drug misuse, abuse, and diversion, but
there is no coordinated Federal public health effort focused on helping
the public and health professionals understand the signs and risks of
overdose and learn how to prevent deaths from drug overdose.
To that end, as advocates dedicated to preventing deaths from
opioid overdose, we request that the Subcommittee consider including
report language in the fiscal year 2013 appropriations bill which urges
the Department of Health and Human Services and appropriate Federal
agencies to adopt the following priorities:
--Take steps to increase awareness of--and access to--the use of
Naloxone, a prescription drug that when administered can
prevent opioid overdose death. Specifically:
--All Federal agencies involved in research, policies, regulation,
and programs related to opioid misuse should coordinate
efforts and develop and disseminate information about
naloxone to healthcare professionals, individuals, and
families and otherwise take other steps to facilitate its
use, so that lives can be saved.
--The Department of Health and Human Services should coordinate a
national public health campaign to increase awareness of
the signs and symptoms of overdose and improve
understanding of the steps that individuals can take to
save the life of someone who is experiencing an overdose.
Such a national campaign should include information
regarding the use of naloxone, rescue breathing, and
calling emergency services, such as 9-1-1 and/or poison
control centers.
--CDC, working in collaboration with the Substance Abuse Mental
Health Services Administration (SAMHSA) and the Health
Resources and Services Administration (HRSA), should enable
best practices, by providing technical assistance and
toolkits for community programs and health professionals
who wish to distribute naloxone.
--Increase Federal surveillance and data collection regarding opioid
use, misuse, and deaths to ensure that policies and programs
are designed to target the actual causes of opioid misuse and
death and to monitor the impact of any new efforts on: access
to pain management; incidence and prevalence of opioid misuse;
and overdose deaths from opioids.
--Support increased access to--and funding of--drug treatment and
recovery.
--Continue Federal investment in the basic, clinical, and
translational research supported by the National Institute of
Drug Abuse (NIDA).
The Harm Reduction Coalition believes that these measures are
critical to meeting the goal of reversing the overdose epidemic in the
United States.
We thank you for your consideration of the important issues.
______

Prepared Statement of the Interstitial Cystitis Association
Thank you for the opportunity to present the views of the
Interstitial Cystitis Association (ICA) regarding the importance of
interstitial cystitis (IC) public awareness activities and research.
ICA was founded in 1984 and remains the only nonprofit organization
dedicated to improving the lives of those affected by IC. The
Association provides an important avenue for advocacy, research, and
education relating to this painful condition. Since its founding, the
ICA has acted as a voice for those living with IC, enabling support
groups and empowering patients. The ICA advocates for the expansion of
the IC knowledge-base and the development of new treatments, including
investigator initiated research. Finally, ICA works to educate
patients, healthcare providers, and the public at large about IC.
IC is a condition that consists of recurring pelvic pain, pressure,
or discomfort in the bladder and pelvic region; it is often associated
with urinary frequency and urgency. This condition may also be referred
to as painful bladder syndrome (PBS), bladder pain syndrome (BPS), and
chronic pelvic pain. It is estimated that as many as 12 million
Americans have IC symptoms, more people than Alzheimer's, breast
cancer, and autism combined. Approximately two-thirds of these patients
are women, though this condition does severely impact the lives of men
as well. IC has also been seen in children; in fact, many adults with
IC report having experienced urinary problems during childhood.
However, there has been little information published about children and
IC, therefore statistics on IC, diagnostic tools, and treatments
specific to children and IC are very limited.
The exact cause of IC is unknown and treatment options are limited.
There is no diagnostic test for IC, so diagnosis is made only after
excluding other urinary/bladder conditions, possibly causing 1 or more
years delay between onset of the symptoms and treatment. When
healthcare providers are not properly educated about IC, patients may
suffer for years before receiving an accurate diagnosis and appropriate
treatment.
The effects of IC are pervasive and insidious, damaging work life,
psychological well-being, personal relationships, and general health.
The impact of IC on quality of life is equally as severe as rheumatoid
arthritis and end-stage renal disease. Health-related quality of life
in women with IC is worse than in women with endometriosis, vulvodynia,
and overactive bladder. IC patients have significantly more sleep
dysfunction, higher rates of depression, anxiety, and sexual
dysfunction.
Some studies also suggest that certain conditions occur more
commonly in people with IC than in the general population. Some of
these include allergies, irritable bowel syndrome, endometriosis,
vulvodynia, fibromyalgia, and migraine headaches. Chronic fatigue
syndrome, pelvic floor dysfunction, and Sjogren's syndrome have also
been reported.
IC Public Awareness and Education
As IC is a condition that often takes years diagnosis, patients
live in pain with no answers for many years. The IC Education and
Awareness Program at the Centers for Disease Control and Prevention
(CDC) plays a major role in increasing the public's awareness of this
devastating disease and is the only program in the Nation which
promotes public awareness of IC.
The public outreach of the CDC program includes public service
announcements on major networks and the Internet. Further, the CDC
program has provided resources to make information on IC available to
patients and the public though videos, booklets, publications,
presentations, educational kits, websites, blogs, Facebook pages, and a
YouTube channel. For providers, this program has included the
development of an IC newsletter with information on IC treatments,
research, news, and events; targeted mailings to providers; and
exhibits at national medical conferences.
This program is a source of information for patients whose doctors
have limited time or information, and many doctors recommend it to
their patients as a resource. Many doctors are hesitant to treat IC
patients because of the amount of time it takes to treat the condition
and the lack of answers available. For this reason, it is especially
critical for this program to provide patients with information about
what they can do to manage this painful condition and lead a normal
life.
In order to continue these vitally important initiatives, it is
critical that the CDC IC Education and Awareness Program be continued
and receive a specific appropriation of $660,000 for fiscal year 2013.
The ICA also encourages continued support for the National Center for
Chronic Disease Prevention and Health Promotion, through which the IC
program is supported.
Research Through the National Institutes of Health
The National Institutes of Health (NIH), mainly through the
National Institute of Diabetes and Digestive and Kidney Diseases
(NIDDK), maintains a robust research portfolio on IC, including five
major studies that yielded significant new information. The RAND IC
Epidemiology (RICE) study found that nearly 2.7-6.7 percent of adult
women have symptoms consistent with IC and will prove important to the
future development of clinical trials and epidemiological studies. The
IC Genetic Twin study found environmental factors, rather than genetic
factors, to be substantial risk factors of developing IC. The Events
Preceding Interstitial Cystitis (EPIC) study yielded significant
information linking non-bladder conditions and infectious agents to the
development of IC in many newly diagnosed IC patients. The findings of
the EPIC study have been reinforced in a Northwestern University study
which found that an unusual form of toxic bacterial molecule (LPS) has
an impact the development of IC as a result of an infectious agent.
Finally, the Urologic Pelvic Pain Collaborative Research Network
(UPPCRN) indicated promising results for a new therapy for IC patients.
Research currently underway also holds great promise to increase
our understanding of IC, and thus find new treatments and a cure. The
Multidisciplinary Approach to the Study of Chronic Pelvic Pain (MAPP)
Research Network holds great potential to understanding the underlying
issues related to IC, other conditions possibly associated with IC, and
new information related to flares of the condition. Research at the
Office of Research on Women's Health (ORWH), specifically through
Specialized Centers of Research on Sex and Gender Factors Affecting
Women's Health, also shows great promise for learning more about IC.
Additionally, the investigator-initiated research portfolio will
continue to support research relating to fundamental issues relating to
IC and pelvic pain, including new avenues for interdisciplinary
research and new treatment options. Continued research will assist in
the development of new treatment and therapies to relieve this
condition.
We applaud the recent establishment of the National Center for
Advancing Translational Sciences (NCATS) at NIH. Housing translational
research activities at a single Center at NIH will allow these programs
to achieve new levels of success. Initiatives like CAN are critical to
overhauling the translational research process and overcoming the
research ``valley of death'' that currently plagues treatment
development. In addition, new efforts like taking the lead on drug
repurposement hold the potential to speed new treatment to patients. We
ask that you support NCATS and provide adequate resources for the
Center in fiscal year 2013.
In order for positive IC research to reach its full potential, it
is essential that NIH continue to receive funding which will allow it
to continue and expand on past and current research. For this reason,
we recommend a funding level of $32 billion for fiscal year 2013. We
also recommend the continuation of the MAPP study and research focused
on IC in children.
Thank you for the opportunity to present the views of the
interstitial cystitis community.
______

Prepared Statement of the Infectious Diseases Society of America
The Infectious Diseases Society of America (IDSA) represents more
nearly 10,000 infectious diseases (ID) physicians and scientists
devoted to patient care, prevention, public health, education, and
research. Investment in ID research and public health efforts, through
lead Department of Health and Human Services (HHS) agencies, can reduce
healthcare costs, save lives, and create jobs. IDSA urges you to
provide strong funding for the following agencies:
National Institutes of Health (NIH)
National Institute of Allergy and Infectious Disease
(NIAID)
IDSA supports funding for NIH of at least $32 billion for fiscal
year 2013, as well as an additional $500 million to support NIAID's
antibacterial resistance and antibacterial drug and diagnostics R&D
program. NIAID conducts and supports needed research on antibiotic
resistance as well as research and development (R&D) of new antibiotics
and diagnostics. Infections are becoming increasingly resistant to
existing antibiotics, and the number of new antibiotics in development
has plummeted. NIAID is establishing a vital new clinical trials
network on antibiotic-resistant infections and it needs sufficient
funding. The Committee also should urge NIAID to form a blue ribbon
panel of experts to create an antibacterial resistance strategic plan
to assist in prioritizing research in this area.
Advancements in diagnostic tools are needed as well. Rapid point-
of-care diagnostics improve physicians' ability to prescribe
antibiotics appropriately, which can improve patient care and survival,
limit the development of resistance, contain healthcare costs, and
identify patients eligible for antibiotic clinical trials. IDSA
requests that the Committee report urge NIAID to consult with
stakeholders to explore the feasibility of creating a biorepository of
prospectively collected specimens (e.g., tissue, sputum, blood, urine)
to ease diagnostics R&D by reducing redundant specimen collection and
assuring quality specimens and data.
NIAID also plays an important role in funding research leading to
new types of treatments for tuberculosis, fungal and viral diseases, as
well as vaccines.
IDSA remains concerned with limiting the salary of NIH extramural
researchers to Executive Level II ($179,700--a reduction of $20,000
from the Executive Level I cap used the past 10 years). The reduction
will disproportionately affect physician investigators and serve as a
deterrent to their research careers at a time when we are already
struggling to remain globally competitive. IDSA urges Congress to
restore the NIH grantee salary cap to Executive Level I.
Centers for Disease Control and Prevention (CDC)
IDSA supports at least $7.8 billion in funding for the Centers for
Disease Control and Prevention's (CDC) programs for fiscal year 2013.
National Center for Emerging and Zoonotic Infectious
Diseases (NCEZID)
NCEZID houses CDC's antimicrobial resistance activities. CDC should
be commended for creating an advisory group of non-government experts
on antimicrobial resistance. Funding reductions to State and local
public health laboratories (which are part of the National
Antimicrobial Resistance Monitoring System--NARMS) hamper efforts to
track resistance and understand its causes. Public health laboratories
and PulseNet are also vital to detecting and tracking foodborne disease
and identifying opportunities to increase food safety. The Emerging
Infections Program (EIP) is a national resource for surveillance,
prevention, and control of emerging infectious diseases whose
activities include bacterial and food borne disease surveillance,
influenza activities, and efforts to track and prevent healthcare-
associated infections, about 70 percent of which are caused by
resistant pathogens.
The United States must improve data collection on antibiotic use to
define the overuse and misuse of antibiotics that drives resistance.
Specifically, IDSA recommends that the Committee report encourage CDC,
in coordination with its partners on the Interagency Task Force on
Antimicrobial Resistance (ITFAR), to issue a report to Congress
comparing European and American antibiotic surveillance and data
collection capacities, including recommendations for the collection of
more comprehensive data in the United States.
The adoption of antimicrobial stewardship programs is crucial to
foster the appropriate use of antibiotics and preserve these drugs'
effectiveness. The Committee report should urge CDC to work in
partnership with the Centers for Medicare and Medicaid Services (CMS)
to continue promoting the uptake of stewardship programs in all
healthcare facilities.
National Healthcare Safety Network (NHSN) and the EpiCenter
Program
IDSA supports the President's request for $27.5 million for NHSN,
which conducts high-quality tracking and monitoring of deadly
healthcare-associated infections (HAIs), of which over 70 percent are
caused by resistant pathogens. NHSN also funds the EpiCenter Program--a
CDC collaboration with five academic centers focused on developing,
implementing, and evaluating strategies to improve healthcare quality
and assure patient safety. Past investment has yielded significant
healthcare cost-savings and produced more than 150 peer-review
publications.
National Center for Immunization and Respiratory Diseases
Section 317 Immunization Program.--Support for CDC's Section 317
must be sustained. Section 317 supports access to (including obtaining
and storing) vaccines, establishment and maintenance of vaccine
registries, education of providers and the public, and promoting
vaccination of healthcare workers (HCWs). Of tremendous concern,
vaccination rates for adults range from 26 percent to 65 percent.
Registries are one vital tool to improve these rates. Forty-nine States
have childhood vaccination registries, but only 20 percent of adults
have immunization information in a registry. The Committee should urge
CDC to continue helping States expand immunization registries with a
focus on improving information-sharing about patients' vaccination
histories across providers and generating vaccination reminders,
especially for adults.
It is critical that HCWs receive the influenza vaccination. During
the last influenza season, 63.5 percent of healthcare workers received
the influenza vaccination according to CDC. The Committee should urge
CDC to work in partnership with CMS to ensure that all healthcare
workers receive the annual influenza vaccination.
Public Health Preparedness and Response Activities
CDC plays a central role in public health emergency preparedness
and response. Funding is needed to provide coordination, guidance and
technical assistance to State and local governments; support the
Strategic National Stockpile; strengthen epidemiologic and public
health laboratory capacity; and provide effective communications during
an emergency.
The National Center for HIV, Viral Hepatitis, STD and TB
Prevention
IDSA supports a minimum increase of $40.2 million for HIV
prevention and $10 million for viral hepatitis at the CDC. CDC plays a
vital role in reducing new HIV infections through evidence-based
prevention, including routine HIV screening. Hepatitis B and C affect
nearly 6 million Americans and can lead to chronic liver disease,
cirrhosis, liver cancer and liver failure that claim 15,000 lives each
year. Increasing rates of gonorrhea are a critical concern because drug
resistant strains have reduced our ability to treat these infections.
Outbreaks of tuberculosis (TB) continue to occur throughout the United
States. Multi-drug-resistant TB poses a particular challenge due to the
very high costs of treatment. Funding is needed to detect, treat, and
prevent these infections.
Prevention and Public Health Fund (PPHF)
The PPHF has filled gaps in core public health funding that should
be sustained in CDC's base appropriation. The PPHF should be maintained
for its true purpose--investment in innovative public health efforts.
The PPHF has made important new investments in epidemiology and
laboratory capacity; public health workforce training; preventing HIV/
AIDS and viral hepatitis; increasing immunization rates; and reducing
health care-associated infections.
Assistant Secretary for Preparedness and Response (ASPR)
Biomedical Advanced Research and Development Authority
(BARDA)
IDSA supports the administration's proposed $547 million for BARDA.
BARDA facilitates advanced R&D of medical countermeasures (MCMs),
including new antibiotics for intentional attacks and naturally
emerging infections. This funding is particularly needed for antibiotic
R&D, given the plummeting private investment in this area.
Independent Strategic Investment Firm
IDSA also supports the administration's proposal to establish an
MCM Strategic Investor with an initial funding level of $50 million.
This new entity will fill a significant void by partnering with small
``innovator'' companies and private investors to address urgent needs,
including novel antimicrobials for multidrug-resistant organisms and
diagnostics.
Designate Leads on Antibiotic Development and Resistance
The Committee report should urge HHS to designate leaders to fill
voids and facilitate coordination and expert input into Federal
antimicrobial resistance efforts by: (1) designating a lead agency to
explore antibiotic R&D public private collaborations similar to those
being established in the European Union; (2) establishing a lead office
and director for the Interagency Task Force on Antimicrobial Resistance
(ITFAR) and providing funding for the ITFAR to implement its action
plan; (3) creating an advisory board of non-government experts that
would work with the ITFAR and its director to establish priorities and
ensure progress toward achieving their goals; (4) permitting non-
government experts to serve on the US/EU Trans-Atlantic Task Force on
Antimicrobial Resistance.
______

Prepared Statement of the International Foundation for Functional
Gastrointestinal Disorders
Thank you for the opportunity to present the views of the
International Foundation for Functional Gastrointestinal Disorders
(IFFGD) regarding the importance of functional gastrointestinal and
motility disorders (FGIMD) research.
Established in 1991, IFFGD is a patient-driven nonprofit
organization dedicated to assisting individuals affected by FGMIDs, and
providing education and support for patients, healthcare providers, and
the public. IFFGD also works to advance critical research on FGIMDs in
order to provide patients with better treatment options, and to
eventually find cures. IFFGD has worked closely with NIH on many
priorities, including the NIH State-of-the-Science Conference on the
Prevention of Fecal and Urinary Incontinence in Adults through the
National Institute of Diabetes and Digestive and Kidney Diseases
(NIDDK), the National Institute of Child Health and Human Development
(NICHD), and the Office of Medical Applications of Research (OMAR). I
served on the National Commission on Digestive Diseases (NCDD), which
released a long-range road map for digestive disease research in 2009,
entitled Opportunities and Challenges in Digestive Diseases Research:
Recommendations of the National Commission on Digestive Diseases.
The need for increased research, more effective and efficient
treatments, and the hope for discovering a cure for FGIMDs are close to
my heart. My own personal experiences of suffering from FGIMDs
motivated me to establish IFFGD 20 years ago. I was shocked to discover
that despite the high prevalence of these conditions among all
demographic groups worldwide, such an appalling lack of dedicated
research existed. This lack of research translates into a dearth of
diagnostic tools, treatments, and patient supports. Even more shocking
is the lack of awareness among both the medical community and the
general public, leading to significant delays in diagnosis, frequent
misdiagnosis, and inappropriate treatments including unnecessary
medication and surgery. It is unacceptable for patients to suffer
unnecessarily from the severe, painful, life-altering symptoms of
FGIMDs due to a lack of awareness and education.
The majority of FGIMDs have no cure and treatment options are
limited. Although progress has been made, the medical community still
does not completely understand the mechanisms of the underlying
conditions. Without a known cause or cure, patients suffering from
FGIMDs face a lifetime of chronic disease management, learning to adapt
to intolerable, disruptive symptoms. The medical and indirect costs
associated with these diseases are enormous; estimates range from $25-
$30 billion annually. Economic costs spill over into the workplace, and
are reflected in work absenteeism and lost productivity. Furthermore,
the emotional toll of these conditions affects not only the individual
but also the family. FGIMDs do not discriminate, affecting all ages,
races and ethnicities, and genders.
Irritable Bowel Syndrome (IBS)
IBS affects 30 to 45 million Americans; conservatively, at least 1
out of every 10 people. Between 9 to 23 percent of the worldwide
population suffers from IBS, resulting in significant human suffering
and disability. IBS as a chronic disease is characterized by a group of
symptoms that may vary from person to person, but typically include
abdominal pain and discomfort associated with a change in bowel
pattern, such as diarrhea and/or constipation. As a ``functional
disorder,'' IBS affects the way the muscles and nerves work, but the
bowel does not appear to be damaged on medical tests. Without a
definitive diagnostic test, many cases of IBS go undiagnosed or
misdiagnosed for years. It is not uncommon for IBS suffers to have
unnecessary tests and treatments, including surgery, before receiving a
proper diagnosis. Even after IBS is identified, treatment options are
sorely lacking and vary widely from patient to patient. What is known
is that IBS often requires a multidisciplinary approach to research and
treatment.
IBS can be emotionally and physically debilitating. Due to
persistent pain and bowel unpredictability, individuals who suffer from
this disorder may distance themselves from social events and work, and
may even fear leaving their home. Stigma surrounding bowel habits may
act as barrier to treatment, as patients are not comfortable discussing
their symptoms with doctors. Because IBS symptoms are relatively common
and not life-threatening, many people dismiss their symptoms or attempt
to self-medicate with over-the-counter medications. In order to
overcome these barriers to treatment, ensure more timely and accurate
diagnosis, and reduce costly, unnecessary procedures, outreach to
physicians and the general public remains critical.
Fecal Incontinence
At least 12 million Americans suffer from fecal incontinence.
Incontinence is neither part of the aging process nor is it something
that affects only the elderly; it crosses all age groups from children
to older adults, but is more common among women and the elderly of both
sexes. Often it is a symptom associated with neurological diseases and
many cancer treatments. Yet, as a society, we rarely hear or talk about
the bowel disorders associated with spinal cord injuries, multiple
sclerosis, diabetes, prostate cancer, colon cancer, uterine cancer, and
other diseases.
Causes of fecal incontinence include: 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. Several of these injuries may occur as a result of
military service. 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 attempt to hide the
problem for as long as possible. They withdraw from friends and family,
and often limit work or education efforts. Incontinence in the elderly
burdens families and is the primary reason for nursing home admissions,
an already significant social and economic burden in our aging
population.
In November 2002, IFFGD sponsored a consensus conference entitled,
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 including more comprehensive identification of quality
of life issues, improved diagnostic tests for affecting management
strategies and treatment outcomes, development of new drug treatment
compounds, development of strategies for primary prevention of fecal
incontinence associated with childbirth, and attention to the stigmas
that apply to individuals with fecal incontinence.
In December 2007, IFFGD collaborated with NIDDK, NICHD, and OMAR on
the NIH State-of-the-Science Conference on the Prevention of Fecal and
Urinary Incontinence in Adults. The goal of this conference was to
assess the state of the science and outline future priorities for
research on both fecal and urinary incontinence, including the
prevalence and incidence of fecal and urinary incontinence, risk
factors and potential prevention, pathophysiology, economic and quality
of life impact, current tools available to measure symptom severity and
burden, and the effectiveness of both short and long term treatment.
More research in these priority areas is necessary to improve the lives
of those who suffer from fecal incontinence.
NIDDK recently launched a Bowel Control Awareness Campaign (BCAC)
to educate the public about fecal incontinence. This campaign provides
resources for healthcare providers, information about clinical trials,
and information about lifestyle changes and advice for individuals
suffering from bowel control issues. The BCAC is an important step in
reaching out to patients, and we encouraged continued support for this
campaign. Further research on fecal incontinence is critical to improve
patient quality of life and implement the research goals of the NCDD.
Gastroesophageal Reflux Disease (GERD)
Gastroesophageal reflux disease, or GERD, is a common disorder
affecting both adults and children, which results from the back-flow of
stomach contents into the esophagus. GERD is often accompanied by
persistent symptoms, such as chronic heartburn and acid regurgitation.
Sometimes there are no apparent symptoms, and the presence of GERD is
revealed when complications become evident. One uncommon but serious
complication is Barrett's esophagus, a potentially pre-cancerous
condition. 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. There are several
treatment options available for individuals suffering from GERD.
Nonetheless, treatment is not always effective, and long-term
medication use and surgery expose individuals to risks of side-effects
or complications.
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 8 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.
Gastroparesis
Gastroparesis, or delayed gastric emptying, refers to a stomach
that empties slowly. Gastroparesis is characterized by symptoms from
the delayed emptying of food, namely: bloating, nausea, vomiting, or
feeling full after eating only a small amount of food. Gastroparesis
can occur as a result of several conditions, including being present in
30 percent to 50 percent of patients who have diabetes mellitus. A
person with diabetic gastroparesis may have episodes of high and low
blood sugar levels due to the unpredictable emptying of food from the
stomach, leading to diabetic complications. Other causes of
gastroparesis include Parkinson's disease and some medications. In many
patients, the cause of the gastroparesis cannot be found and the
disorder is termed idiopathic gastroparesis.
Cyclic Vomiting Syndrome
Cyclic vomiting syndrome (CVS) is a disorder with recurrent
episodes of severe nausea and vomiting interspersed with symptom free
periods. The periods of intense, persistent nausea, vomiting, and other
symptoms (abdominal pain, prostration, and lethargy) last hours to
days. Previously thought to occur primarily in pediatric populations,
it is increasingly understood that this crippling syndrome can occur in
a variety of age groups including adults. Patients with these symptoms
often go for years without correct diagnosis. CVS leads to significant
time lost from school and from work, as well as substantial medical
morbidity. The cause of CVS is not known. Better understanding, through
research, of mechanisms that underlie upper gastrointestinal function
and motility involved in sensations of nausea, vomiting, and abdominal
pain is needed to help identify at-risk individuals and develop more
effective treatment strategies.
Support for Critical Research
IFFGD urges Congress to fund the NIH at level of $32 billion for
fiscal year 2013. Strengthening and preserving our Nation's biomedical
research enterprise fosters economic growth and supports innovations
that enhance the health and well-being of the Nation. Concurrent with
overall NIH funding, the IFFGD supports growth of research activities
on FGIMDs, particularly through NIDDK. Increased support for NIDDK will
facilitate necessary expansion of the research portfolio on FGIMDs
necessary to grow the medical knowledge base and improve treatment.
Such support would expedite the implementation of recommendations from
the NCDD. It is also vital for NIDDK to work with NICHD to expand its
research on the impact these disorders have on pediatric populations.
Following years of near level-funding at NIH, research opportunities
have been negatively impacted across all NIH Institutes and Centers.
Without additional funding, medical researchers run the risk of losing
promising research opportunities.
We applaud the recent establishment of the National Center for
Advancing Translational Sciences (NCATS) at NIH. Housing translational
research activities at a single Center at NIH will allow these programs
to achieve new levels of success. Initiatives like Cures Acceleration
Network (CAN) are critical to overhauling the research process and
overcoming the gap in translating basic into clinical research that
currently plagues treatment development. In addition, new efforts like
taking the lead on drug repurposement hold the potential to speed new
treatment to patients. We ask that you support NCATS and provide
adequate resources for the Center in fiscal year 2013.
Thank you for the opportunity to present these views on behalf of
the FGIMD community.
______

Prepared Statement of the Interstate Mining Compact Commission
We are writing in opposition to the fiscal year 2013 budget request
for the Mine Safety and Health Administration (MSHA), which is part of
the U.S. Department of Labor. In particular, we urge the subcommittee
to reject MSHA's proposed reduction of $5 million for grants to States
for safety and health training of our Nation's miners pursuant to
section 503(a) of the Mine Safety and Health Act of 1977. Over the past
several fiscal years, MSHA's budget request for State grants was
approximately $9 million, which approached the statutorily authorized
level of $10 million but still did not fully consider inflationary and
programmatic increases being experienced by the States. We therefore
urge the subcommittee to restore funding to the statutorily authorized
level of $10 million for State grants so that States are able to meet
the training needs of miners and to fully and effectively carry out
State responsibilities under sections 502 and 503(a) of the Act.
The Interstate Mining Compact Commission is a multi-state
governmental organization that represents the natural resource,
environmental protection and mine safety and health interests of its 24
member States. The States are represented by their Governors who serve
as Commissioners.
IMCC's member States are concerned that without full funding of the
State grants program, the federally required training for miners
employed throughout the United States will suffer. States are
struggling to maintain efficient and effective miner training and
certification programs in spite of increased numbers of trainees and
the incremental costs associated therewith. State grants have flattened
out over the past several years and are not keeping pace with
inflationary impacts or increased demands for training. The situation
will likely be further exacerbated by new statutory, regulatory and
policy requirements that grow out of the various reports and
recommendations attending the Upper Big Branch accident.
In MSHA's own budget justification document (at page 72), the
agency states that: ``Training plays a critical role in preventing
deaths, injuries, and illnesses on the job. By providing effective
training, miners are able to recognize possible hazards and understand
the safe procedures to follow. MSHA will continue its increased
visibility and emphasis on training because it is critically important
to making progress in reducing the number of injuries and fatalities.''
Furthermore, in a March 5, 2012 communication to State training grant
recipients, MSHA specifically asked for the States' assistance ``by
including in your training, as appropriate, information on the [``Rules
To Live By'' campaign].'' In this same letter, MSHA went on to note
that ``the number of miners you reach yearly through the training your
program provides makes your contribution to the success of the program
all that more important.''
We are mystified about how MSHA intends to accomplish these stated
objectives without the training programs that are provided by the
States pursuant to the grants they receive from MSHA--as has been the
case since the enactment of the Mine Safety and Health Act in 1977. By
way of an explanation for the drastic cut to training grants, MSHA
states on page 73 of its budget justification document that because of
the ``higher priorities'' placed on its enforcement activities, $5
million will be ``reallocated'' and that it will ``shift responsibility
for training back to mine operators.'' As a follow on, MSHA recognizes
that some training services now provided by States will be ``reduced or
eliminated'' and that ``operators will become more actively involved
with their training or find other resources to provide training.'' This
appears to be an effort by MSHA to begin shifting training
responsibilities and costs entirely to mine operators. While this idea
may have merit, we are uncertain about the ability of the mining
industry to accommodate these new costs (especially small operators)
and suspect that any realignment of training responsibilities from the
States to the industry will take considerable time and planning.
Furthermore, our experience over the past 35 years has demonstrated
that the States are often in the best place to design and offer this
training in a way that insures that the goals and objectives of
sections 502 and 503 of the Mine Safety and Health Act are adequately
met.
The first time that the States became aware of this effort to shift
responsibilities for miner training (and to reduce State grants) was
upon the release of the Department of Labor's budget on February 13.
There have been no discussions with the States about the impacts that
this proposal will have on State training programs or about any sort of
transition in the way we are currently doing business. To propose such
a dramatic shift without first consulting the States is inappropriate
and a denigration of the role the States have played in protecting our
Nation's miners. Furthermore, to expect such a drastic change in
operations to occur within a single fiscal year is unrealistic and will
only result in confusion and potential negative impacts to the
availability and quality of miner training.
While we can appreciate MSHA's desire to realign its resources to
focus on inspection and enforcement, one of the most effective ways to
insure miner health and safety in the first place is through
comprehensive and excellent training. MSHA Assistant Secretary Main
specifically spoke to this in a recent letter he sent to State grant
recipients wherein he stated: ``As in the past, we are reaching out to
the grantees, recognizing the positive impact you have in delivering
training to miners. I am asking that you incorporate, as appropriate,
training on these types of [fatal] accidents as well as measures needed
to prevent them. Increased training and awareness is necessary if we
are to prevent these types of deaths.'' The States have been in the
forefront of providing this training for over 35 years and are best
positioned to continue that work into the future. Furthermore, the
Federal Government's relatively modest investment of money in
supporting the States to handle this training has paid huge dividends
in protecting lives and preventing injuries. The States are also able
to provide these services at a cost well below what it would cost the
Federal Government to do so.
As you consider our request to reject MSHA's proposed cut and
instead to increase MSHA's budget for State training grants, please
keep in mind that the States play a particularly critical role in
providing special assistance to small mine operators (those coal mine
operators who employ 50 or fewer miners or 20 or fewer miners in the
metal/nonmetal area) in meeting their required training needs. This has
been a particular focus in those States where metal/non-metal mining
operations predominate. These are often small operators who cannot
afford to offer the comprehensive training that is required under
Section 502 of the Mine Safety and Health Act. Given this
administration's articulated concerns about the impacts of regulatory
decisions on small businesses, it is surprising that MSHA would propose
significant cuts to the training that States provide to these small
operators. Some States have also recently received requests from the
VFW to provide ``new miner training'' for returning war veterans in
order to prepare them for potential employment in the mining industry.
Without the funding provided to States by MSHA, this may be difficult
to accomplish in a timely manner, if at all.
We appreciate the opportunity to submit our views on the MSHA
budget request as part of the overall Department of Labor budget.
Please feel free to contact us for additional information or to answer
any questions you may have.
______

Prepared Statement of the Lummi Indian Business Council
Good morning to the distinguished Committee Members. Thank you for
this opportunity. I am honored to present the appropriations request of
the Lummi Nation for fiscal year 2013.
background information
The Lummi Nation is located on the northern coast of Washington
State, and is the third largest Tribe in Washington State serving a
population of over 5,200. The Lummi Nation is a fishing Nation. We have
drawn our physical and spiritual sustenance from the marine tidelands
and waters for hundreds of thousands of years. Now the abundance of
wild salmon is gone, and the remaining salmon stocks do not support
commercial fisheries. Consequently, our fishers are trying to survive
off the sale of shellfish products. In 1999 we had 700 licensed fishers
who supported nearly 3,000 tribal members. Today, we have about 523
remaining. This means that over 200 small businesses in our community
have gone bankrupt in the past 15 years. This is the inescapable
reality the Lummi Nation fishers face without salmon. We were the last
surviving society of hunters/gatherers within the contiguous United
States, but we can no longer survive living by the traditional ways of
our ancestors.
lummi specific requests--department of labor
Direct the DOL Office of Indian Energy, Economic and Workforce
Development to work with the Lummi Nation in support of its
comprehensive Fisherman's Cove Harbor and Working Water Front Project
which addresses Indian Energy, Economic and Workforce Development needs
of the Lummi Nation membership.
Unemployment on the reservation has been very difficult to address
with limited on-reservation jobs. Tribal governments need to be able to
meet the employment and training needs of our membership as well as the
business development needs of our communities. This is the objective of
the Lummi Nation Fisherman's Cove Harbor and Working Waterfront
Project. We need financial assistance to enable our membership to get
the job skills the local (Reservation and Non-Reservation) labor market
demands. The Lummi Nation needs to fully develop the Working Waterfront
Project for the benefit of and to create jobs for the Lummi Nation
fishers, members and others invested in the marine economy of the
extreme northwest corner of the United States.
lummi specific requests--department of health and human services
Implement ACA and IHCIA.--Direct the Department and the U.S. Indian
Health Services to fully and completely implement the Indian Specific
provision of the Affordable Care Act and the newly reauthorized Indian
Health Care Improvement Act (IHCIA).
Affordable Care Act and newly reauthorized Indian Health Care
Improvement Act.--Tribes are dismayed by the lack of support they have
received in the development and implementation of the following:
--Long Term and Community Based Care.--The authorization of long term
and community based care Tribal communities are among the last
to receive access to this all important healthcare option.
--Tribal Medicaid Program Demonstration Project.--The Act authorizes
a demonstration project to enable Tribes to demonstrate their
ability to successfully plan, develop, implement and operate
Medicaid Programs for the benefit of their membership.
--Healthcare Insurance Exchanges.--To support the planning
development, implementation and operation of tribes as
providers of healthcare insurance on the same basis as State
are receiving this technical and financial assistance from the
Department.
Support for full and complete implementation of the Indian Specific
provision of the Lummi Nation requests the committee support the SAMHSA
Proposed Tribal Block Grant to combat Drug Epidemic among the Lummi
Nation membership.
Wellness is the #1 Priority of the Council in 2012-13.--Drug abuse
is at epidemic proportions on the Lummi Reservation. The proximity of
the Lummi Reservation to the United States and Canadian borders makes
for a key ingredient in successful drug trafficking. With that prime
ingredient add production, transportation, distribution, abuse and drug
related crimes . . . this is our reality where my people are becoming
prisoners in our own homes.
What We Have Done: Our people are seeking a return to health
through massive consumption of Lummi Nation Health Care resources. We
have increased the number of Tribal members receiving substance abuse
treatment and mental health counseling.
What We Still Need: We are not equipped to keep pace with the
increasing access and use of heroin and other opiate additive drugs
that have besieged our ports, borders, communities and citizens. Lummi
Nation and other Tribes cannot successfully compete with politically
connected communities and interest groups which receive the majority of
the funding that is available through the State block grant system. We
need assistance to secure funding to plan develop, construct and
implement, programs services and facilities needed to improve health
and safety in our communities.
Reauthorization of Head Start.--Lummi Nation is very interested in
the process of reauthorizing the Head Start Act. Lummi has operated a
Head Start programs since 1966. Several members of the current elected
Lummi Nation Tribal Council are graduates of Lummi Nation Head Start.
Self-governance Option.--Lummi Nation requests that Tribes have an
option to receive their Head Start program funding as a transfer of
funds from the Federal Government to the Tribal government on a
government-to-government basis. All Head Start funding is allocated on
a continuing basis consistent with the current operations of Self-
Governance Tribes. The Head Start Program has evolved away from its
original grant based allocation system but has yet to remove the grant
documents from its award system. It is a grant that acts like a
transfer of funds.
Designation Issues.--Tribal governments must not be subject to the
re-designation process as Grantees for Head Start Program. Due to the
unique culture of Tribal people, only those competent in the local
tribal culture are able to assess and assist in the development of
Tribal children. This is not a job that can be performed by others. We
ask that the regulations promulgated last year regarding re-designation
of tribal programs be withdrawn and replaced with regulations that make
it clear that only service providers who are known to the Tribe and
approved by the Tribe are eligible participants, in any designation
and/or re-designation process.
Head Start Facility.--The Lummi Nation has successfully completed
several quality improvement plans required as a result of the Head
Start performance Reviews. Each time we have not been able to address
the deficits of our Head start Facility. The Tribe has secured a loan
in the amount of $4.2 million to build a new and expanded Head Start
Facility. However to meet Head Start performance standards the Tribe
needs another $1.2 million. This amount will insure that four
classrooms in the proposed facility will be suitable for special needs
children. This amount is beyond the Tribe's ability to increase its
debt load and must be contributed by other sources. Lummi Nation needs
additional financial assistance to complete this long over-due project.
lummi specific requests--department of education
Head Start for Tribal Development--New Head Start Facility.--The
Lummi Nation requests that the Committee directs BIE and DHHS,
Children's Bureau support the construction of a new Head Start/day care
facility for the Lummi Nation membership with technical and financial
assistance. Lummi has operated a Head Start program since 1966 in the
same facility. Successive Head Start Performance reviews have
consistently identified the building as not meeting Head Start
Performance standards. The Tribe is seeking gap financing in the amount
of $1.2 million to complete the proposed new facility. These additional
costs are generated by Head Start Performance and tribal Child Care
Facility Standards.
Head Start Program.--Head Start is a development program which is
supports many early educational objectives. But it is first and
foremost a child and family development program. The Lummi Nation does
not support the proposal to transfer the Head Start Program to the
Department of Education.
BIE Memorandum of Understanding.--The Lummi Nation is aware that
the Bureau of Indian Education and the Department of Education are
close to signing a memorandum of understanding regarding the role of
the Department of Education in the Bureau operate school system. The
Lummi Nation notes that no tribes were involved in the development of
the MOU and that no tribes will be involved in the operation of the
MOU. This is not acceptable. Tribal governments do not rely on the BIA
or the BIE to operate their schools. Most of the school operated by the
Bureau of Indian Education are contract or grant schools which are
actually operated by Tribal governments. Tribal people sit on our Board
of Education and Tribal parents participate in the education of their
children. We firmly object to any action directed at us taken without
us.
Revise Federal education laws to strengthen teaching about family
violence/children violence in a school curricula--initiate renewed
America by strengthening family values to teaching that all forms of
violence hurts everyone, not only children.
Thank you for this opportunity to provide these appropriations
priorities of the Lummi Nation.
______

Prepared Statement of the Mesothelioma Applied Research Foundation
Chairman Harkin and Members of the subcommittee, I am grateful for
the opportunity to provide written testimony. My name is Bonnie
Anderson and I suffer from peritoneal mesothelioma. I am testifying on
behalf of the mesothelioma community composed of patients, physicians,
caregivers and family members. I would like to take this time to stress
the importance of increased funding for the National Institutes of
Health (NIH), including the National Cancer Institute (NCI), and the
Centers for Disease Control and Prevention (CDC), both of which play a
critical role in finding and delivering treatments for mesothelioma.
Mesothelioma is an aggressive cancer known to be caused by exposure
to asbestos. Doctors say it is among the most painful and fatal of
cancers, as it invades the chest, abdomen and heart, and crushes the
lungs and vital organs.
Early in 2001, I began to experience severe stomach pain, diarrhea
and other general symptoms. These were treated as irritable bowel
syndrome. Treatment, which included anti-spasmodics and pain
medication, proved ineffective. I underwent a ridiculous amount of
tests: blood work, gynecological work-ups, a scope of my bladder, both
upper and lower GI colonoscopy and endoscopy. After performing the
latter, my gastroenterologist suggested exploratory surgery, but the
surgeon thought it unnecessary. A barium enema followed by an X-ray
also revealed nothing. Another gastroenterologist ordered a CAT scan.
Finally, in December 2001 my abdomen filled up with ascites. Again
a CAT scan was ordered, and my gastroenterologist attempted to remove
the fluid. The procedure was so painful the specialist had to end it
before he was able to withdraw all of the fluid. Tests taken from the
fluid returned negative for any cancer cells. But I was still in pain,
the pressure was horrible and unreal. In February 2002, I was sent to a
surgeon for a laparoscopy. The surgeon removed 6 liters of fluid and
was able to see what he described as indoor-outdoor carpet spread all
over the lining of the abdomen. Before I left the operating room, he
asked the hospital's pathology department to confirm that he was indeed
viewing what he suspected: mesothelioma. Pathology confirmed his
assessment. Though he had been in practice for many years, the surgeon
confessed he had never seen mesothelioma before--except in a textbook.
When I woke up, he told my husband John and me the news.
When we first heard the word ``mesothelioma,'' we didn't know what
it was. Then the doctor explained it in one word: ``cancer.'' The harsh
reality for patients with advanced primary peritoneal cancer is a
median survival time of 12.3 months; 5 year survivals are rare.
Peritoneal affects the lining of the abdomen. Patients with pleural
mesothelioma, which affects the lining of the lungs, comprise 85
percent of the mesothelioma population and face an even more grim
survival time of only 9 months. Many never have the opportunity to
speak for themselves like this. I am here 10 years after my diagnosis.
Fortunately, I am the exception.
At the time, I was told I had about 6 months to live. With that
information, my decision was to go into a clinical trial. I
participated knowing I could face devastating side effects but with the
hope I could help doctors learn how to treat mesothelioma and possibly
live a while longer. I am willing to do anything to save my life and
add precious more minutes to my time with my family. I went through
many agonizing rounds of appeals with my insurance company in order to
cover my surgeries and experimental treatment, but I felt this was the
best course of treatment. I knew if I was going to die from
mesothelioma, I was going to put it to good use in a clinical trial.
There are brilliant researchers dedicated to mesothelioma. The Food
and Drug Administration (FDA) has now approved one drug which has some
effectiveness, proving that the tumor is not invincible. Biomarkers are
being identified. Two of the most exciting areas in cancer research--
gene therapy and biomarker discovery for early detection and
treatment--look particularly promising in mesothelioma. The
Mesothelioma Applied Research Foundation has made a significant
investment, funding a total of $7.6 million to support research in
hopes of giving researchers the first seed grant they need to get
started. We need the continued partnership with the Federal Government
to develop the promising findings into effective treatments.
There are currently several promising research initiatives that are
giving hope to mesothelioma patients:
--A vaccine is being developed that would induce an immune response
against WT1, a tumor suppressor gene highly expressed in
mesothelioma patients. A pilot trial is being conducted in
patients with mesothelioma to show that it is safe and
immunogenic.
--The National Mesothelioma Virtual Bank has been established due to
a grant from the Centers on Disease Control and Prevention's
National Institute on Occupational Safety and Health. The
Virtual Bank allows researchers to access a virtual biospecimen
registry which supports and facilitates research and
collaboration.
It is efforts like these that give me faith. I am grateful for the
Federal Government's investment in mesothelioma research and I want to
see it continued and increased.
In 2010, the National Cancer Institute funded $8.3 million in
mesothelioma research. This is a 6 percent decrease from the 2009
funding level, which had declined 14 percent from 2008. This steady
decline in funding terrifies me as a patient anxiously awaiting
development of new treatments. At this juncture unless researchers have
the funds to continue, patients like myself will have run out of
treatment options and will die from this disease.
I pray that improved treatments are developed--ones that aren't so
severe and work better! I hope that future patients don't have to
suffer the trial and error approach to being properly diagnosed and
treated that I endured. More than anything, I wish there was a cure.
The mesothelioma community asks that the Subcommittee recognize the
National Institutes of Health (NIH) as a critical national priority by
providing at least $32 billion in funding in the fiscal year 2013
Labor-HHS-Education appropriations bill. This funding recommendation
represents the minimum investment necessary to avoid further loss of
promising research and at the same time allows the NIH's budget to keep
pace with biomedical inflation.
I look to the Labor, Health and Human Services, Education and
Related Agencies Appropriations subcommittee to provide continued
leadership and hope to the people like me who develop this deadly
cancer. You have the power to lead this battle against meso. Thank you
for the opportunity to submit testimony and for funding the National
Institutes of Health and the National Cancer Institute at the highest
possible level so that patients receiving this deadly diagnosis of
mesothelioma may survive.
______

Prepared Statement of the March of Dimes Foundation
The 3 million volunteers and 1,200 staff members of the March of
Dimes Foundation appreciate the opportunity to submit Federal funding
recommendations for fiscal year 2013. The March of Dimes was founded in
1938 by President Franklin D. Roosevelt to support research to prevent
polio. Today, the Foundation aims to improve the health of women,
infants and children by preventing birth defects, premature birth, and
infant mortality through scientific 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 51 chapters and 213 divisions in every
State, the District of Columbia and Puerto Rico. The March of Dimes
recommends the following funding levels for programs and initiatives
that are essential investments in maternal and child health.
Preterm Birth
Preterm birth is a serious health problem that costs the United
States more than $26 billion annually. In 2008, one in eight infants
was born preterm (before 37 weeks gestation). Preterm birth is the
leading cause of newborn mortality (death within the first month) and
the second leading cause of infant mortality (death within the first
year). Among those who survive, one in five faces health problems that
persist for life such as cerebral palsy, intellectual disabilities,
chronic lung disease, blindness and deafness.
In 2010, the National Center for Health Statistics (NCHS) announced
that the Nation's preterm birth rate fell below 12 percent for the
first time in nearly a decade. It represented the fourth consecutive
year of decline, bringing the rate down 6 percent from the peak of 12.8
percent in 2006. We believe one of the reasons for the decline was the
result of legislation enacted in 2006, the PREEMIE Act (Public Law 109-
450), which led to the development of a public-private agenda aimed at
reducing preterm labor and delivery. The Act mandated a Surgeon
General's conference to address the growing problem of preterm birth.
In 2008, more than 200 of the country's foremost experts convened for 2
days to develop a comprehensive, national strategy to address the
costly and serious problems of preterm birth. The meeting resulted in
an action plan that included several overarching themes and
recommendations. The March of Dimes' fiscal year 2013 funding requests
regarding preterm birth are based on the recommendations from the 2008
conference and the PREEMIE Act.
National Institutes of Health (NIH)
The March of Dimes supports the recommendation of the Ad Hoc Group
for Medical Research and urges the Subcommittee to recognize the NIH as
a critical national priority by providing at least $32 billion in
funding in the fiscal year 2013 Labor-HHS-Education appropriations
bill. This funding recommendation represents the minimum investment
necessary to avoid further loss of promising research and at the same
time allows the NIH's budget to keep pace with biomedical inflation.
The March of Dimes commends members of the Subcommittee for their
continuing support of the National Children's Study (NCS). When fully
implemented, this study will follow 100,000 children in the United
States from before birth until age 21. The data will help scientists at
universities and research organizations across the country and around
the world identify precursors of diseases and develop new strategies
for treatment and prevention. The Foundation remains committed to
supporting a well-designed NCS that promotes research of the highest
quality and asks the Subcommittee to do the same.
Eunice Kennedy Shriver National Institute of Child Health
and Human Development (NICHD)
For fiscal year 2013, the March of Dimes recommends at least $1.37
billion for the NICHD. This $46 million increase compared to the fiscal
year 2012 enacted level will enable NICHD to sustain its support for
intramural preterm birth-related research and clinical research
conducted through the Maternal-Fetal Medicine Units, Neonatal Research
Network, and Genomic and Proteomic Network for Preterm Birth Research.
In addition, the March of Dimes urges the Subcommittee to request that
NICHD identify the steps and resources necessary to establish one or
more Transdisciplinary Research Centers for Prematurity, as recommended
by the Institute of Medicine. The causes of preterm birth are multi-
faceted and necessitate a coordinated and collaborative approach
integrating many disciplines. In 2011, the March of Dimes and Stanford
University School of Medicine launched the Nation's first
transdisciplinary research center dedicated to identifying the causes
of premature birth. The March of Dimes is committed to opening five
transdisciplinary centers across the country. A public-private
partnership combining the resources of NICHD and private organizations
would significantly enhance the impact of this research.
Centers for Disease Control and Prevention--Preterm Birth
The CDC's National Center for Chronic Disease Prevention and Health
Promotion's Safe Motherhood Program works to promote optimal
reproductive and infant health. For fiscal year 2013, the March of
Dimes recommends a sustained funding level of at least $44 million, and
the inclusion of a $2 million preterm birth sub-line as authorized by
the PREEMIE Act (Public Law 109-450), to strengthen our national data
systems to monitor trends and investigate health issues related to
pregnancy and promote the health of women before, during and after
pregnancy.
Centers for Disease Control and Prevention--National Center
for Health Statistics
The National Center for Health Statistics' (NCHS) vital statistics
program collects birth and death data that are used to monitor the
Nation's health status, set research and intervention priorities, and
evaluate the effectiveness of existing health programs. It is
imperative that data collected by NCHS be comprehensive and timely.
Unfortunately, a quarter of the States and territories lack the
capacity to use the most recent (2003) birth certificate format and
only two-thirds have adopted the most recent (2003) death certificate
format. The March of Dimes supports the President's recommendation to
provide $162 million--a $24 million increase over the fiscal year 2012
enacted level, which will support States and territories as they
implement the 2003 Certificates of Birth, Death, and Fetal Deaths and
aid in the transition to electronic collection of vital events data.
Birth Defects
According to the Centers for Disease Control and Prevention, an
estimated 120,000 infants in the United States are born with major
structural birth defects each year. Genetic or environmental factors,
or a combination of both, can cause various birth defects, yet the
causes of more than 70 percent are unknown. Additional Federal
resources are sorely needed to support research to discover the causes
of all birth defects and for the development of effective interventions
to prevent or at least reduce their prevalence.
Centers for Disease Control and Prevention--National Center
on Birth Defects and Developmental Disabilities
(NCBDDD)
The NCBDDD conducts programs to protect and improve the health of
children by preventing birth defects and developmental disabilities and
by promoting optimal development and wellness among children with
disabilities. For fiscal year 2013, the March of Dimes requests at
least level funding of $137 million for NCBDDD. We also encourage the
Subcommittee to provide sustained funding levels of at least $2 million
to support folic acid education and $22 million to support birth
defects research and surveillance--a $2 million increase from fiscal
year 2012 enacted levels.
Allocating an additional $2 million to birth defects research and
surveillance will support genetic analysis of the research samples
already obtained through the NCBDDD's National Birth Defects Prevention
Study--the largest case-controlled study of birth defects ever
conducted. This analysis would enable researchers to identify relevant
mutations and potential risk factors, which would then lead to
prevention strategies. In addition, this investment would make possible
the continuation of NCBDDD's State-based birth defects surveillance
grant program. Surveillance is the backbone of the public health
network and its support should be a Subcommittee priority. Because of
the current fiscal situation facing many States, funding for State-
based surveillance systems is in jeopardy and requires increased
Federal support to ensure the survival of essential birth defects
surveillance programs.
Further, allocating at least $2 million to folic acid education
will allow the CDC to sustain its effective national education campaign
aimed at reducing the incidence of spina bifida and anencephaly by
promoting consumption of folic acid. Since the institution of
fortification of U.S. enriched grain products with folic acid, the rate
of neural tube defects has decreased by 26 percent. However, CDC
estimates that up to 70 percent of neural tube defects could be
prevented if all women of childbearing age consumed 400 micrograms of
folic acid daily. Sustained funding levels will ensure CDC can continue
to educate women on the importance of folic acid.
The March of Dimes is very concerned about the administration's
request to consolidate NCBDDD's budget lines into three categories. As
proposed, the Birth Defects and Developmental Disabilities budget line
would be renamed Child Health and Development and existing sub-
categories would be eliminated (e.g. Birth Defects, Fetal Alcohol
Syndrome, Folic Acid) with the exception of Autism. While the March of
Dimes recognizes and supports program flexibility for CDC management,
we are concerned that the title ``Child Health and Development'' fails
to make clear the overall purpose of the programs covered, obscuring
the urgency and importance of the need for ongoing support from
Congress. The March of Dimes urges modification of the administration's
proposal by retaining the term ``Birth Defects'' as a sub-line under
the category ``Child Health and Development.'' This adjustment is
needed to ensure that essential activities to reduce birth defects are
not undermined or otherwise put at risk.
Newborn Screening
Newborn screening is a vital public health activity used to
identify genetic, metabolic, hormonal and functional disorders in
newborns so that treatment can be provided. Screening detects
conditions in newborns that, if left untreated, can cause disability,
developmental delays, intellectual disabilities, serious illnesses or
even death. If diagnosed early, many of these disorders can be
successfully managed. Across the Nation, State and local governments
experiencing significant budget shortfalls are considering
discontinuing screening for certain conditions or postponing the
purchase of necessary technology. This situation represents a serious
threat that, if left unresolved, will put infants at risk of permanent
disability or even death. For fiscal year 2013, the March of Dimes
urges the subcommittee to provide at least $10 million for HRSA's
heritable disorders program, as authorized by the Newborn Screening
Saves Lives Act (Public Law 110-204).
Agency for Health Care Research and Quality (AHRQ)
AHRQ supports research to improve healthcare quality, reduce costs
and broaden access to essential health services. For fiscal year 2013,
the March of Dimes recommends $400 million for AHRQ to continue its
important work, including the development and dissemination of maternal
and pediatric quality measures and comparative effectiveness research.
Moreover, with the historic enactment of health reform last year,
AHRQ's research is needed more than ever to build the evidence base
that will be used to improve health and healthcare coverage.
Health Resources and Services Administration--Maternal and
Child Health Block Grant
Title V of the Social Security Act, the Maternal and Child Health
Block Grant, supports community-based programs aimed at decreasing
infant mortality, preventing disabling conditions, increasing the
number of children immunized and improving the overall health of
mothers and children. Reduced funding threatens the ability of these
programs to carry on this work. For fiscal year 2013, the March of
Dimes recommends at least $645 million for the Maternal and Child
Health Block Grant, level funding from the fiscal year 2012 enacted
level.
Centers for Disease Control and Prevention--National
Immunization Program
Infants are particularly vulnerable to infectious diseases, which
is why it is critical to protect them through immunization. In 2008,
the national estimated immunization coverage among children 19-35
months of age was 76 percent. Childhood immunizations are among the
most cost-effective preventive health measures. Every dollar invested
in immunizing a child saves $16.50 in medical and societal costs. The
CDC's National Immunization Program supports States, communities and
territorial public health agencies through grants to reduce the
incidence of disability and death resulting from vaccine-preventable
diseases. The March of Dimes is requesting $720 million in fiscal year
2013 for the Section 317 National Immunization Program.
CDC Polio Eradication
Since its creation as an organization dedicated to research and
services related to polio, the March of Dimes has been committed to the
eradication of this disabling disease. The March of Dimes is requesting
$126.4 million in fiscal year 2013 for CDC's Polio Eradication Program,
which would allow CDC to continue its immunization activities in the
remaining endemic and high-risk countries in Africa and Asia and
interrupt polio transmission in these regions.
Closing
The Foundation's volunteers and staff in every State, the District
of Columbia and Puerto Rico look forward to working with Members of
this Subcommittee to secure the resources needed to improve the health
of the nation's mothers, infants and children.

MARCH OF DIMES: FISCAL YEAR 2013 FEDERAL FUNDING PRIORITIES
[In thousands of dollars]
------------------------------------------------------------------------
March of Dimes
Program fiscal year
2013 request
------------------------------------------------------------------------
National Institutes of Health (Total)................... 32,000,000
National Children's Study........................... ..............
Common Fund......................................... 569,452
National Institute of Child Health and Development.. 1,370,000
National Human Genome Research Institute............ 534,381
National Institute on Minority Health and 292,524
Disparities........................................
Centers for Disease Control and Prevention (Total)...... 7,800,000
National Center for Birth Defects and Developmental 140,100
Disabilities (NCBDDD)..............................
Birth Defects Research and Surveillance......... 22,300
Folic Acid Campaign............................. 2,800
Immunization and Respiratory Diseases............... ..............
Section 317..................................... 720,000
Polio Eradication................................... 126,400
Safe Motherhood..................................... 44,000
Preterm Birth................................... 2,000
National Center for Health Statistics............... 162,000
Health Resources and Services Administration (Total).... 7,000,000
Maternal and Child Health Block Grant............... 640,098
Heritable Disorders................................. 10,000
Universal Newborn Hearing........................... 18,660
Community Health Centers............................ 1,500,000
Healthy Start....................................... 103,532
Children's Graduate Medical Education............... 317,500
Agency for Healthcare Research and Quality (Total)...... 400,000
------------------------------------------------------------------------

______

Prepared Statement of the Medical Library Association and the
Association of Academic Health Sciences Libraries
summary of recommendations for fiscal year 2013
Continue the commitment to the National Library of Medicine (NLM)
by increasing funding levels to $372.6 million for fiscal year 2013.
Continue to support the medical library community's role in NLM's
outreach, telemedicine, disaster preparedness and health information
technology initiatives and the implementation of health care reform.
introduction
The Medical Library Association (MLA) and the Association of
Academic Health Sciences Libraries (AAHSL) thank the Subcommittee for
the opportunity to submit testimony regarding fiscal year 2013
appropriations for the National Library of Medicine (NLM), a division
of the National Institutes of Health (NIH). Working in partnership with
other parts of the NIH and other Federal agencies, NLM is the key link
in the chain that translates biomedical research into practice, making
the results of research readily available worldwide.
MLA is a nonprofit, educational organization with approximately
4,000 health sciences information individual and institutional members.
Founded in 1898, MLA provides lifelong educational opportunities,
supports a knowledge base of health information research, and works
with a network of partners to promote the importance of quality
information for improved health to the healthcare community and the
public. AAHSL is composed of the libraries of 124 accredited U.S. and
Canadian medical schools, and 26 associate members. AAHSL supports
academic health sciences libraries and directors in advancing the
patient care, research, education and community service missions of
academic health centers through visionary executive leadership and
expertise in health information, scholarly communication, and knowledge
management. Together, MLA and AAHSL address health information issues
and legislative matters of importance to both our organizations.
the importance of annual funding increases for nlm
We are pleased that the President's fiscal year 2013 budget
proposal provides a funding increase NLM which will bolster its
baseline budget. In today's challenging budget environment, we
recognize the difficult decisions Congress faces as it seeks to improve
our Nation's fiscal stability. We appreciate and thank the Subcommittee
for its long-time commitment to strengthening NLM's budget and
encourage you to also consider increasing the NIH budget by providing
at least $32 billion in your fiscal year 2013 Labor-HHS-Education
appropriations bill.
MLA and AAHSL believe that increased funding for NLM is essential
to maximize the return on the investment in research conducted by the
NIH and other organizations. By collecting, organizing, and making the
results of bio-medical information more accessible to other
researchers, clinicians, business innovators, and the public, NLM
enables such information to be used more efficiently and effectively to
drive innovation and improve the Nation's health. This role has become
more important as the volume of biomedical data produced each year
expands exponentially, driven by the influx of data from high-
throughput genome sequencing systems and genome-wide association
studies. NLM plays a critical role in accelerating nationwide
deployment of health information technology, including electronic
health records (EHRs) by leading the development, maintenance and
dissemination of key standards for health data interchange that are now
required of certified EHRs. NLM also contributes to
Congressional priorities related to drug safety through its efforts
to expand its clinical trial registry and results database in response
to recent legislation requirements, and to the Nation's ability to
prepare for and respond to disasters. We encourage the Subcommittee to
provide meaningful annual increases for NLM in the coming years and
recommend an increase to $372.6 million for fiscal year 2013. Beyond
fiscal year 2013, it is critical to continue augmenting NLM's baseline
budget to accommodate expansion of its information resources, services,
and programs which must collect, organize, and make readily accessible
rapidly expanding volumes of biomedical knowledge.
Growing Demand for NLM's Basic Services
The National Library of Medicine is the world's largest biomedical
library and the source of trusted health information. Every day,
medical librarians across the Nation assist clinicians, students,
researchers, and the public in accessing the information they need to
save lives and improve health. NLM delivers more than a trillion bytes
of data to millions of users every day that helps researchers advance
scientific discovery and accelerate its translation into new therapies;
provides health practitioners with information that improves medical
care and lowers its costs; and gives the public access to resources and
tools that promote wellness and disease prevention. Without NLM, our
Nation's medical libraries would be unable to provide the quality
information services that our Nation's health professionals, educators,
researchers and patients have come to expect.
NLM's data repositories and online integrated services such as
GenBank, PubMed, and PubMed Central are helping to revolutionize
medicine and advance science to the next important era which includes
individualized medicine based on an individual's unique genetic
differences. GenBank, with its international partners, has become the
definitive source of gene sequence information and organizing, along
with NLM's other genetic databases, the volumes of data that are needed
to detect associations between genes and disease, and translate that
knowledge into better diagnosis and treatments. Earlier this year, NLM
launched the Genetic Testing Registry (GTR), a new resource for quickly
finding information about genetic tests and their providers. The
registry includes detailed information about available tests, the
test's purpose and its limitations; the name and location of the test
provider; whether it is a clinical or research test; what methods are
used; and what is measured. The registry will provide valuable
information to healthcare professionals looking for answers related to
their patients' diseases as well as researchers seeking to identify
gaps in scientific knowledge.
PubMed, with more than 20 million citations to the biomedical
literature, is the world's most heavily used source of information
about published results of biomedical research. Approximately 700,000
new citations are added each year, and it is searched more than 2.2
million times each day. PubMed Central, NLM's freely accessible digital
repository of biomedical journal articles, has become a valuable
resource for researchers, clinicians, consumers and librarians. On a
typical weekday more than 500,000 users download 1 million full-text
articles.
We commend the Appropriations Committee for its support of the NIH
public access policy which requires all NIH-funded researchers to
deposit their final, peer-reviewed manuscripts in NLM's PubMed Central
database within 12 months of publication. This highly beneficial policy
is improving access to timely and relevant scientific information,
stimulating discovery, informing clinical care, and improving public
health literacy. We are pleased that other efforts are underway to
expand public access policies across Federal agencies. The Federal
Research Public Access Acts, H.R. 4004 and S. 2096, would require
agencies with annual extramural research portfolios of over $100
million to develop public access policies related to research conducted
by employees of that agency. Passage of FRPAA would bring the benefits
of public access to other research disciplines. Further, because
research in other disciplines is increasingly relevant to biomedicine,
broadening public access policies across agencies will support better
patient care, biomedical research, education, and health information
technology. We support the work of the Office of Science and Technology
Policy (OSTP) to implement the scholarly publications requirements in
Section 103 of the American Competes Reauthorization Act which will
ensure long-term stewardship and broad public access to the peer-
reviewed scholarly publications resulting from federally funded
scientific research. MLA and AAHSL have observed firsthand the
significant benefit of providing public access to publications arising
from NIH funded research, including its positive benefit-cost ratio,
return on investment, and efficacy and efficiency to fuel new research,
discoveries, and therapies, and applaud efforts to further this work in
other areas.
As the world's largest and most comprehensive medical library,
NLM's traditional print and electronic collections continue to steadily
increase each year. These collections stand at more than 11.4 million
items--books, journals, technical reports, manuscripts, microfilms,
photographs and images. By selecting, organizing and ensuring permanent
access to health sciences information in all formats, NLM is ensuring
the availability of this information for future generations, making it
accessible to all Americans, irrespective of geography or ability to
pay, and ensuring that citizens can make the best, most informed
decisions about their healthcare.
Clearly, NLM is a national treasure which is making a difference in
patients' lives and healthcare outcomes. For example, an MLA member
shared that recently a surgeon came to the library 12 minutes before
surgery to find an article on the complex procedure he was about to
perform. By searching NLM's PubMed/Medline database, the librarian
found illustrations that guided the surgeon during surgery enabling him
to save the man's foot.
encourage nlm partnerships with the medical library community
Outreach and Education
NLM's outreach programs are essential to MLA and AAHSL membership
and to the profession. These activities are designed to educate medical
librarians, health professionals and the general public about NLM's
services and to train them in the most effective use of these services.
NLM has taken a leadership role in promoting educational outreach aimed
at public libraries, secondary schools, senior centers and other
consumer-based settings. Furthermore, NLM's emphasis on outreach to
underserved populations assists the effort to reduce health disparities
among large sections of the American public. One example of NLM's
leadership is the ``Partners in Information Access'' program which is
designed to improve the access of local public health officials to
information needed to prevent, identify and respond to public health
threats. With more than 6,300 members in communities across the
country, the National Network of Libraries of Medicine (NN/LM) is well
positioned to ensure that every public health worker has electronic
health information services that can protect the public's health.
NLM is also at the forefront of efforts to provide consumers with
trusted, reliable health information. Its MedlinePlus system provides
consumer-friendly information on more than 900 topics in English and
Spanish, and has become a top destination for those seeking information
on the Internet, attracting more than 750,000 visitors per day.
Librarians at Louisiana State University's Health Sciences Center
Medical Library in Shreveport provide in-person support for patients
and the public seeking health information and have also established
``healthelinks.org'', a website with information on diseases and
conditions, medicines, procedures and surgical operations, lab tests,
and more from NLM's MedlinePlus system. With help from Congress, NLM,
NIH and the Friends of NLM launched NIH MedlinePlus Magazine in
September 2006. This quarterly publication is distributed in doctors'
waiting rooms and provides the public with access to high-quality,
easily understood health information. Its readership is now estimated
at 5 million people nationwide and is poised to grow, thanks to the
launch of a Spanish/English version, NIH MedlinePlus Salud, in January
2009. NLM also continues to work with medical librarians and health
professionals to encourage doctors to provide MedlinePlus ``information
prescriptions'' to their patients, directing them to relevant
information on NLM's consumer-oriented MedlinePlus information system.
This initiative also encourages genetics counselors to prescribe the
use of NLM's Genetic Home Reference website. Using NLM's new
MedlinePlus Connect utility, a growing number of clinical care
organizations are implementing specific links from their electronic
health record systems to relevant patient education materials in
MedlinePlus, enabling them to achieve an emerging criterion for
achieving meaningful use of health information technology. MedinePlus
Connect was recently named a winner in the HHS Innovates competition.
NLM also provides access to information about clinical research for
a wide range of diseases. Launched in February 2000, ClinicalTrials.gov
contains registration information for some 117,000 trials. The database
is a free and invaluable resource for patients and families who are
interested in participating in cutting-edge treatments for serious
illnesses. In recent years, it has become more valuable for patients,
clinicians, researchers, and others, including librarians, who help
patients identify relevant trials and provide clinicians and
researchers with access to information about specific products such as
new drugs under study. In response to the Food and Drug Administration
Amendments Act of 2007, NLM has expanded ClinicalTrials.gov to accept
summary results of clinical trials, including adverse events. Such
information is not available systematically from other publicly
accessible resources, and all too often is not published in the
scientific literature. The system currently contains results for more
than 5,000 trials, and the Library receives approximately 50 new
results submission each week. More than 50,000 users visit the site
each day.
MLA and AAHSL applaud the success of NLM's outreach initiatives,
particularly those initiatives that reach out to the medical libraries
and health consumers. We ask the Committee to encourage NLM to continue
to coordinate its outreach activities with the medical library
community in fiscal year 2013.
emergency preparedness and response
NLM has a long history of programs and resources that support
disaster preparedness and response activities. Building on its
experiences in responding to Hurricane Katrina, NLM established a
Disaster Information Management Research Center to collect and organize
disaster-related health information, ensure effective use of libraries
and librarians in disaster planning and response, and develop
information services to assist responders. The Library responds to
specific disasters worldwide with specialized information resources
appropriate to the need, including information on bioterrorism,
chemical emergencies, fires and wildfires, earthquakes, tornadoes, and
pandemic disease outbreaks. Recently, the Library launched a Disaster
Information Apps and Mobile Web sites page designed to provide mobile
device users access to Web-based content. MLA and NLM continue to
develop the Disaster Information Specialization (DIS) program aimed at
building the capacity of librarians and other interested professionals
to provide disaster-related health information outreach. Currently MLA
is developing five courses on topics assigned by NLM and based on the
NLM Disaster Information Curriculum and will include basic and advanced
topics in Disaster Health Information.
Working with libraries and U.S. publishers, NLM has established an
Emergency Access Initiative that makes available free full-text
articles from hundreds of biomedical journals and reference books for
use by medical teams responding to disasters. Over the last 2 years,
this initiative has assisted relief efforts in Japan, Pakistan, and
Haiti. It organized and made available health information resources
relevant to the gulf oil spill. MLA and AAHSL see a role for NLM and
the Nation's health sciences libraries in disaster preparedness and
response activities, and we ask the Subcommittee to support NLM's role
in this initiative which has a major objective of ensuring continuous
access to health information and effective use of libraries and
librarians when disasters occur.
Health Information Technology and Bioinformatics
NLM has played a pivotal role in creating and nurturing the field
of medical informatics which is the intersection of information
science, computer science and healthcare. Health informatics tools
include computers, clinical guidelines, formal medical terminologies,
and information and communication systems. For nearly 35 years, NLM has
supported informatics research, training and the application of
advanced computing and informatics to biomedical research and
healthcare delivery including a variety of telemedicine projects. Many
of today's informatics leaders are graduates of NLM-funded informatics
research programs at universities across the country. Many of the
country's exemplary electronic and personal health record systems
benefit from NLM grant support.
The importance of NLM's work in health information technology
continues to grow as the Nation moves toward more interoperable health
information technology systems. A leader in supporting, licensing,
developing and disseminating standard clinical terminologies for free
nationwide use (e.g., SNOWMED), NLM works closely with the Office of
the National Coordinator for Health Information Technology (ONCHIT) to
promote the adoption of inter-operable electronic records, It has
developed tools to make it easier for EHR developers and users to
implement accepted health data standards in their systems.
MLA and AAHSL encourage the Subcommittee to continue their strong
support for NLM's medical informatics and genomic science initiatives,
at a point when the linking of clinical and genetic data holds
increasing promise for enhancing the diagnosis and treatment of
disease. MLA and AAHSL also support health information technology
initiatives in ONCHIT that build upon initiatives housed at NLM.
Building and Facility Needs
The tremendous growth in NLM's basic functions related to the
acquisition, organization and preservation of its ever-expanding
collection of biomedical literature, combined with its growing
contributions to healthcare reform, health information technology, drug
safety, and exploitation of genomic information is straining the
Library's physical resources. During times of economic hardship, NLM's
role becomes increasingly important and it often serves as an archive
of last resort for medical libraries looking for ways to cut back and
trim their own collections.
Digital archiving--once thought to be a solution to the problem of
housing physical collections--has only added to the challenge, as
materials must often be stored in multiple formats as new digital
resources consume increasing amounts of data center storage space. As a
result, the space needed for computing facilities has also grown, and a
new facility is urgently needed. This need has been recognized by the
Subcommittee in Senate Report 108-345 that accompanied the fiscal year
2005 appropriations bill. However, the economic challenges of the last
several years have hampered movement on this project.
While Congress continues to face tremendous funding challenges in
fiscal year 2013, MLA and AAHSL encourage the Subcommittee to
acknowledge the need for construction of the new building to take place
when the Federal budget stabilizes so that information-handling
capabilities and biomedical research are not jeopardized. At a time
when medical and health science libraries across the Nation face
growing financial and space constraints, ensuring that NLM continues to
serve as the archive of last resort for biomedical collections is
critical to the medical library community and the public we serve.
Thank you again for the opportunity to present the views of the
medical library community.
______

Prepared Statement of Meharry Medical College
Mr. Chairman and members of the subcommittee, thank you for the
opportunity to present my views before you today. I am Dr. Wayne J.
Riley, President and CEO of Meharry Medical College in Nashville,
Tennessee. I have previously served as vice-president and vice dean for
health affairs and governmental relations and associate professor of
medicine at Baylor College of Medicine in Houston, Texas and as
assistant chief of medicine and a practicing general internist at
Houston's Ben Taub General Hospital. In all of these roles, I have seen
firsthand the importance of minority health professions institutions
and the Title VII Health Professions Training programs.
Mr. Chairman, time and time again, you have encouraged your
colleagues and the rest of us to take a look at our Nation and evaluate
our needs over the next 10 years. I took you seriously and came here
prepared to offer my best judgments. First, I want to say that it is
clear that health disparities among various populations and across
economic status are rampant and overwhelming. Over the next 10 years,
we will need to be able to deliver more culturally relevant and
culturally competent healthcare services. Bringing healthcare delivery
up to this higher standard can serve as our Nation's own preventive
healthcare agenda keeping us well positioned for the future.
Minority health professional institutions and the Title VII Health
Professions Training programs address this critical national need.
Persistent and severe staffing shortages exist in a number of the
health professions, and chronic shortages exist for all of the health
professions in our Nation's most medically underserved communities. Our
Nation's health professions workforce does not accurately reflect the
racial composition of our population. For example, African-Americans
represent approximately 15 percent of the U.S. population while only 2-
3 percent of the Nation's healthcare workforce is African-American.
There is a well established link between health disparities and a
lack of access to competent healthcare in medically underserved areas.
As a result, it is imperative that the Federal Government continue its
commitment to minority health profession institutions and minority
health professional training programs to continue to produce healthcare
professionals committed to addressing this unmet need.
An October 2006 study by the Health Resources and Services
Administration (HRSA), entitled ``The Rationale for Diversity in the
Health Professions: A Review of the Evidence'' found that minority
health professionals serve minority and other medically underserved
populations at higher rates than non-minority professionals. The report
also showed that; minority populations tend to receive better care from
practitioners who represent their own race or ethnicity, and non-
English speaking patients experience better care, greater
comprehension, and greater likelihood of keeping follow-up appointments
when they see a practitioner who speaks their language. Studies have
also demonstrated that when minorities are trained in minority health
profession institutions, they are significantly more likely to: (1)
serve in rural and urban medically underserved areas, (2) provide care
for minorities and (3) treat low-income patients.
As you are aware, Title VII Health Professions Training programs
are focused on improving the quality, geographic distribution and
diversity of the healthcare workforce in order to continue eliminating
disparities in our Nation's healthcare system. These programs provide
training for students to practice in underserved areas, cultivate
interactions with faculty role models who serve in underserved areas,
and provide placement and recruitment services to encourage students to
work in these areas. Health professionals who spend part of their
training providing care for the underserved are up to 10 times more
likely to practice in underserved areas after graduation or program
completion.
Institutions that cultivate minority health professionals have been
particularly hard-hit as a result of the cuts to the Title VII Health
Profession Training programs in fiscal year 2006 and fiscal year 2007
funding resolution passed earlier this Congress. Given their historic
mission to provide academic opportunities for minority and financially
disadvantaged students, and healthcare to minority and financially
disadvantaged patients, minority health professions institutions
operate on narrow margins. The cuts to the Title VII Health Professions
Training programs amount to a loss of core funding at these
institutions and have been financially devastating.
Mr. Chairman, I feel like I can speak authoritatively on this issue
because I received my medical degree from Morehouse School of Medicine,
a historically black medical school in Atlanta. I give credit to my
career in academia, and my being here today, to Title VII Health
Profession Training programs' Faculty Loan Repayment Program. Without
that program, I would not be the president of my father's alma mater,
Meharry Medical College, another historically black medical school
dedicated to eliminating healthcare disparities through education,
research and culturally relevant patient care.
Minority Centers of Excellence.--COEs focus on improving student
recruitment and performance, improving curricula in cultural
competence, facilitating research on minority health issues and
training students to provide health services to minority individuals.
COEs were first established in recognition of the contribution made by
four historically black health professions institutions (the Medical
and Dental Institutions at Meharry Medical College; The College of
Pharmacy at Xavier University; and the School of Veterinary Medicine at
Tuskegee University) to the training of minorities in the health
professions. Congress later went on to authorize the establishment of
``Hispanic'', ``Native American'' and ``Other'' Historically black
COEs. For fiscal year 2013, I recommend a funding level of $24.602
million for COEs.
Health Careers Opportunity Program (HCOP).--HCOPs provide grants
for minority and non-minority health profession institutions to support
pipeline, preparatory and recruiting activities that encourage minority
and economically disadvantaged students to pursue careers in the health
professions. Many HCOPs partner with colleges, high schools, and even
elementary schools in order to identify and nurture promising students
who demonstrate that they have the talent and potential to become a
health professional. Over the last three decades, HCOPs have trained
approximately 30,000 health professionals including 20,000 doctors,
5,000 dentists and 3,000 public health workers. For fiscal year 2013, I
recommend a funding level of $22.133 million for HCOPs.
National Institutes of Health (NIH)
Research Centers at Minority Institutions.--The Research Centers at
Minority Institutions program (RCMI) is now housed at the National
Institute on Minority Health and Health Disparities (NIMHD). RCMI 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, the funding for this important
program grow at the same rate as NIH overall in fiscal year 2013.
National Institute on Minority Health and Health Disparities.--The
National Institute on Minority Health and Health Disparities (NIMHD) is
charged with addressing the longstanding health status gap between
minority and nonminority populations. The NIMHD helps health
professional institutions to narrow the health status gap by improving
research capabilities through the continued development of faculty,
labs, and other learning resources. The NIMHD also supports biomedical
research focused on eliminating health disparities and develops a
comprehensive plan for research on minority health at the NIH.
Furthermore, the NIMHD provides financial support to health professions
institutions that have a history and mission of serving minority and
medically underserved communities. For fiscal year 2013, I recommend
that this Institute's funding grow proportionally with the funding of
the NIH and add additional FTEs.
Department of Health and Human Services
Office of Minority Health.--Specific programs at OMH include:
--Assisting medically underserved communities with the greatest need
in solving health disparities and attracting and retaining
health professionals,
--Assisting minority institutions in acquiring real property to
expand their campuses and increase their capacity to train
minorities for medical careers,
--Supporting conferences for high school and undergraduate students
to interest them in health careers, and
--Supporting cooperative agreements with minority institutions for
the purpose of strengthening their capacity to train more
minorities in the health professions.
The OMH has the potential to play a critical role in addressing
health disparities. For fiscal year 2013, I recommend a funding level
of $65 million for the OMH.
Department of Education
Strengthening Historically Black Graduate Institutions Program.--
The Department of Education's Strengthening Historically Black Graduate
Institutions program (Title III, Part B, Section 326) is extremely
important to MMC and other minority serving health professions
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. In fiscal year 2013, an
appropriation of $65 million is suggested to continue the vital support
that this program provides to historically black graduate institutions.
Mr. Chairman, please allow me to express my appreciation to you and
the members of this subcommittee. With your continued help and support,
Meharry Medical College along with other minority health professions
institutions and the Title VII Health Professions Training programs can
help this country to overcome health and healthcare disparities.
Congress must be careful not to eliminate, paralyze or stifle the
institutions and programs that have been proven to work. Meharry and
other minority health professions schools seek to close the ever
widening health disparity gap. If this subcommittee will give us the
tools, we will continue to work toward the goal of eliminating that
disparity as we have done for 1,876.
Thank you, Mr. Chairman, for this opportunity.
______

Prepared Statement of the Morehouse School of Medicine
Mr. Chairman and members of the subcommittee, thank you for the
opportunity to present my views before you today. I am Dr. John E.
Maupin, President of Morehouse School of Medicine (MSM) in Atlanta,
Georgia. I have previously served as President of Meharry Medical
College, executive vice-president at Morehouse School of Medicine,
director of a community health center in Atlanta, and deputy director
of health in Baltimore, Maryland. In all of these roles, I have seen
firsthand the importance of minority health professions institutions
and the Title VII Health Professions Training programs.
I want to say that minority health professional institutions and
the Title VII Health Professionals Training programs address a critical
national need. Persistent and sever staffing shortages exist in a
number of the health professions, and chronic shortages exist for all
of the health professions in our Nation's most medically underserved
communities. Furthermore, our Nation's health professions workforce
does not accurately reflect the racial composition of our population.
For example while blacks represent approximately 15 percent of the U.S.
population, only 2-3 percent of the Nation's health professions
workforce is black. MSM is a private school with a very public mission
of educating students from traditionally underserved communities so
that they will care for the underserved. Mr. Chairman, I would like to
share with you how your committee can help us continue our efforts to
help provide quality health professionals and close our Nation's health
disparity gap.
There is a well established link between health disparities and a
lack of access to competent healthcare in medically underserved areas.
As a result, it is imperative that the Federal Government continue its
commitment to minority health profession institutions and minority
health professional training programs to continue to produce healthcare
professionals committed to addressing this unmet need.
An October 2006 study by the Health Resources and Services
Administration (HRSA), entitled ``The Rationale for Diversity in the
Health Professions: A Review of the Evidence'' found that minority
health professionals serve minority and other medically underserved
populations at higher rates than non-minority professionals. The report
also showed that; minority populations tend to receive better care from
practitioners who represent their own race or ethnicity, and non-
English speaking patients experience better care, greater
comprehension, and greater likelihood of keeping follow-up appointments
when they see a practitioner who speaks their language. Studies have
also demonstrated that when minorities are trained in minority health
profession institutions, they are significantly more likely to: (1)
serve in rural and urban medically underserved areas, (2) provide care
for minorities and (3) treat low-income patients.
As you are aware, Title VII Health Professions Training programs
are focused on improving the quality, geographic distribution and
diversity of the healthcare workforce in order to continue eliminating
disparities in our Nation's healthcare system. These programs provide
training for students to practice in underserved areas, cultivate
interactions with faculty role models who serve in underserved areas,
and provide placement and recruitment services to encourage students to
work in these areas. Health professionals who spend part of their
training providing care for the underserved are up to 10 times more
likely to practice in underserved areas after graduation or program
completion.
Given the historic mission, of institutions like MSM, to provide
academic opportunities for minority and financially disadvantaged
students, and healthcare to minority and financially disadvantaged
patients, minority health professions institutions operate on narrow
margins. The slow reinvestment in the Title VII Health Professions
Training programs amounts to a loss of core funding at these
institutions and have been financially devastating.
Mr. Chairman, I feel like I can speak authoritatively on this issue
because I received my dental degree from Meharry Medical College, a
historically black medical and dental school in Nashville, Tennessee. I
have seen first hand what Title VII funds have done to minority serving
institutions like Morehouse and Meharry. I compare my days as a student
to my days as president, without that Title VII, our institutions would
not be here today. However, Mr. Chairman, since those funds have been
slowly replenished, we are standing at a cross roads. This committee
has the power to decide if our institutions will go forward and thrive,
or if we will continue to try to just survive. We want to work with you
to eliminate health disparities and produce world class professionals,
but we need your assistance.
Minority Centers of Excellence.--COEs focus on improving student
recruitment and performance, improving curricula in cultural
competence, facilitating research on minority health issues and
training students to provide health services to minority individuals.
COEs were first established in recognition of the contribution made by
four historically black health professions institutions (the Medical
and Dental Institutions at Meharry Medical College; The College of
Pharmacy at Xavier University; and the School of Veterinary Medicine at
Tuskegee University) to the training of minorities in the health
professions. Congress later went on to authorize the establishment of
``Hispanic'', ``Native American'' and ``Other'' Historically black
COEs. For fiscal year 2013, I recommend a funding level of $24.602
million for COEs.
Health Careers Opportunity Program (HCOP).--HCOPs provide grants
for minority and non-minority health profession institutions to support
pipeline, preparatory and recruiting activities that encourage minority
and economically disadvantaged students to pursue careers in the health
professions. Many HCOPs partner with colleges, high schools, and even
elementary schools in order to identify and nurture promising students
who demonstrate that they have the talent and potential to become a
health professional. Over the last three decades, HCOPs have trained
approximately 30,000 health professionals including 20,000 doctors,
5,000 dentists and 3,000 public health workers. For fiscal year 2013 I
recommend a funding level of $22.133 million for HCOPs.
National Institutes of Health (NIH)
National Institute on Minority Health and Health Disparities.--The
National Institute on Minority Health and Health Disparities (NIMHD) is
charged with addressing the longstanding health status gap between
minority and nonminority populations. The NIMHD helps health
professional institutions to narrow the health status gap by improving
research capabilities through the continued development of faculty,
labs, and other learning resources. The NIMHD also supports biomedical
research focused on eliminating health disparities and develops a
comprehensive plan for research on minority health at the NIH.
Furthermore, the NIMHD provides financial support to health professions
institutions that have a history and mission of serving minority and
medically underserved communities through the Minority Centers of
Excellence program. For fiscal year 2013, I recommend a funding
increase proportional to any increase given to the NIH and additional
FTE positions.
Research Centers at Minority Institutions.--The Research Centers at
Minority Institutions program (RCMI), newly moved to NIMHD, 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, the funding for this important
program grow at the same rate as NIH overall in fiscal year 2013.
Department of Health and Human Services
Office of Minority Health.--Specific programs at OMH include: (1)
Assisting medically underserved communities with the greatest need in
solving health disparities and attracting and retaining health
professionals; (2) assisting minority institutions in acquiring real
property to expand their campuses and increase their capacity to train
minorities for medical careers; (3) supporting conferences for high
school and undergraduate students to interest them in health careers;
and (4) supporting cooperative agreements with minority institutions
for the purpose of strengthening their capacity to train more
minorities in the health professions. The OMH has the potential to play
a critical role in addressing health disparities, and with the proper
funding this role can be enhanced. For fiscal year 2013, I recommend a
funding level of $65 million for the OMH.
Department of Education
Strengthening Historically Black Graduate Institutions.--The
Department of Education's Strengthening Historically Black Graduate
Institutions program (Title III, Part B, Section 326) is extremely
important to MSM and other minority serving health professions
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. In fiscal year 2013, an
appropriation of $65 million is suggested to continue the vital support
that this program provides to historically black graduate institutions.
Mr. Chairman, please allow me to express my appreciation to you and
the members of this subcommittee. With your continued help and support,
Morehouse School of Medicine along with other minority health
professions institutions and the Title VII Health Professions Training
programs can help this country to overcome health and healthcare
disparities. Congress must be careful not to eliminate, paralyze or
stifle the institutions and programs that have been proven to work. MSM
and other minority health professions schools seek to close the ever
widening health disparity gap. If this subcommittee will give us the
tools, we will continue to work toward the goal of eliminating that
disparity as we have since our founding day.
Thank you, Mr. Chairman, and I welcome every opportunity to answer
questions for your records.
______

Prepared Statement of the National Association of County and City
Health Officials
The National Association of County and City Health Officials is the
voice of the 2,800 local health departments that safeguard the health
of approximately 300 million people across the country. These city,
county, metropolitan, district, and tribal departments work every day
to ensure the safety of the water we drink, the food we eat, and the
air we breathe.
Local health departments have a unique and distinctive role and set
of responsibilities in the larger health system and within every
community. The Nation's current financial challenges are compounded by
those in State and local governments that have resulted in diminishing
the ability of local health departments to address community health and
safety needs. Repeated rounds of budget cuts and layoffs continue to
erode local health department capacity. According to recent surveys of
local and State health departments, since 2008 52,000 jobs have been
lost due to budget reductions.
To help protect the public's health, we urge the Subcommittee on
Labor, Health and Human Services, Education and Related Agencies to
consider the following fiscal year 2013 funding requests:
Public Health Emergency Preparedness
Center: Center for Public Health Preparedness and Response (CDC)
Funding Line: State and Local Preparedness and Response Capability
Sub-line: Public Health Emergency Preparedness Cooperative Agreements
(PHEP)
NACCHO request: $715 million
Fiscal Year 2013 President's Budget: $642 million (including CDC
Capacity)
Fiscal Year 2012: $643 million (not including CDC Capacity)
The Public Health Emergency Preparedness (PHEP) cooperative
agreement program provides funding to support local and State public
health department capacity and capability to effectively respond to
public health emergencies including terrorist threats, infectious
disease outbreaks, natural disasters, and biological, chemical,
nuclear, and radiological emergencies. Local and State health
departments work with the Federal Government, law enforcement,
emergency management, health care, business, education, and religious
groups to plan, train, and prepare for emergencies so that when
disaster strikes, communities are prepared. NACCHO opposes the
administration's proposal to eliminate the separate funding line for
PHEP and to cut the program by $8 million to pay for CDC programmatic
operating costs. PHEP grants have been cut by 28 percent since 2004;
NACCHO supports a return to the fiscal year 2010 funding level of $715
million.
Hospital Preparedness Program
Assistant Secretary for Preparedness and Response (DHHS)
NACCHO request: $426 million
Fiscal Year 2013 President's Budget: $255 million
Fiscal Year 2012: $380 million
Administered by the Assistant Secretary for Preparedness and
Response, the Hospital Preparedness Program (HPP) provides funding to
local and State health departments to enhance hospital preparedness and
improve overall surge capacity in the case of public health
emergencies. The preparedness activities carried out under this program
strengthen the capabilities of hospitals throughout the country to
respond to floods, hurricanes, or wildfires, and also include training
for a potential influenza pandemic or terrorist attack. NACCHO opposes
the administration's proposal to cut HPP by $120 million. While HPP and
PHEP grants have been aligned, the first year of alignment is
``mechanical'' in terms of getting the grant year and the application
process for both programs in the same funding period. NACCHO supports a
return to the fiscal year 2010 funding level of $426 million.
Medical Reserve Corps
Office of the Surgeon General (DHHS)
NACCHO request: $12.6 million
Fiscal Year 2013 President's Budget: $10.9 million
Fiscal Year 2012: $11.2 million
Administered by the Office of the Surgeon General, the Medical
Reserve Corps (MRC) is a national network of local groups of volunteers
that work to strengthen their local public health infrastructure and
preparedness capabilities. Over the past 10 years, the program has
grown to more than 200,000 volunteers in nearly 1,000 units in 50
States, the District of Columbia, and several territories. The network
of MRC volunteers includes medical and public health professionals, as
well as non-medical volunteers who provide leadership, logistic and
other support. MRC units are community-based and focus on local needs.
The workload for these volunteers will increase as a result of the
reduced health department workforce due to preparedness cuts. NACCHO
supports a return to the fiscal year 2010 funding level of $12.6
million.
Chronic Disease Prevention
Center: Center for Chronic Disease Prevention and Health Promotion
(CDC)
Funding Line: Community Transformation Grants (CTG)
NACCHO Request: $226 million (including health department eligibility)
Fiscal Year 2013 President's Budget: $146 million
Fiscal Year 2012: $226 million
The Community Transformation Grant (CTG) program provides resources
for local communities to address heart attacks, strokes, cancer,
diabetes, and other chronic diseases which contribute to the soaring
cost of healthcare in the United States. The grants focus on the
implementation, evaluation and dissemination of evidence-based
community preventive health activities in order to develop strategies
and practices that will enable States, counties, cities and tribes to
control chronic disease and health disparities. Grantees are charged
with a 5 percent reduction in death and disability due to tobacco use,
heart disease and stroke and the rate of obesity through nutrition and
physical activity in 5 years. Local and State public health departments
should remain eligible to apply for funding through this important
initiative in fiscal year 2013 and subsequent fiscal years. NACCHO
supports the fiscal year 2012 funding level of $226 million for
Community Transformation Grants.
Center: Center for Chronic Disease Prevention and Health Promotion
(CDC)
Funding Line: Coordinated Chronic Disease Prevention and Health
Promotion Grant Program
NACCHO Request: $379 million
Fiscal Year 2013 President's Budget: $379 million (+$129 million from
fiscal year 2012)
Fiscal Year 2012: $250 million
Chronic diseases such as heart disease, cancer, stroke and diabetes
are responsible for 7 of 10 deaths among Americans each year and
account for 75 percent of healthcare spending. Today's children are in
danger of becoming the first generation to live shorter, less healthy
lives than their parents. The Coordinated Chronic Disease Prevention
and Health Promotion Grants, as proposed in the President's budget,
will provide local and State health departments flexibility to
streamline funding to prevent, control, and reduce the burden of
chronic illness and to address the underlying causes of chronic
diseases in a more integrated and coordinated fashion. Local health
departments seek relief from duplicative administrative burden for the
multiple siloed funding streams resulting in more funding going into
programs and out to the community.
At a minimum, NACCHO recommends that Congress encourage CDC to
provide greater coordination among chronic disease programs and reduce
duplicative administrative burden. NACCHO recommends the continuation
of funding for State coordination grants begun in fiscal year 2011 for
this purpose if funds are not made available for the coordinated
Chronic Disease Prevention and Health Promotion Grant Program.
Food Safety
Center: Center for Emerging and Zoonotic Infectious Diseases (CDC)
Funding Line: Food Safety
NACCHO Request: $44 million
Fiscal Year 2013 President's Budget: $44 million (+$17 million from
fiscal year 2012)
Fiscal Year 2012: $27 million
Foodborne illness affects 48 million Americans every year,
resulting in 128,000 hospitalizations and 3,000 deaths. CDC's Food
Safety program seeks to ensure food safety through surveillance and
outbreak response. Local and State health departments are an essential
part of the process that ensures that food is safe to eat at home, at
community events, in restaurants, and in schools. NACCHO supports the
administration's $17 million increase as it will advance implementation
of the Food Safety Modernization Act by enhancing and integrating
disease surveillance, improving outbreak and response timeliness and
helping address deficits in local capacity to prevent and stop illness.
This increase will enable CDC to enhance and integrate disease
surveillance, improve outbreak response timeliness and help address
local deficits in capacity to prevent and stop illness. The increase
also expands the number of Foodborne Diseases Centers for Outbreak
Response Enhancement (FoodCORE) sites.
Public Health Performance Improvement
Center: Center for Public Health Leadership and Support (CDC)
Funding Line: National Public Health Improvement Initiative
NACCHO Request: $40.2 million
Fiscal Year 2013 President's Budget: $40.2 million
Fiscal Year 2012: $40.2 million
The National Public Health Improvement Initiative (NPHII) provides
funding to 74 State, tribal, local and territorial health departments
to make fundamental changes and enhancements in their organizations and
practices that improve the delivery and impact of public health
services. Local and State health departments currently face
unprecedented financial challenges that threaten their ability to
prevent disease and promote health in their communities. NPHII
strengthens health departments by providing staff, training, tools, and
technical/capacity building assistance dedicated to establishing
performance management and evidence-based practices that drive improved
service delivery and better health outcomes. NACCHO supports
continuation of funding for this important quality improvement program
for health departments.
317 Immunization Program
Center: National Center for Immunization and Respiratory Diseases (CDC)
Funding Line: 317 Immunization Program
NACCHO Request: $720 million
Fiscal Year 2013 President's Budget: $562.2 million
Fiscal Year 2012: $620.2 million
The Section 317 Immunization Program provides funds to 50 States,
six large cities and eight territories for vaccine purchase for at-need
populations and immunization program operations, including support for
implementing billing systems for immunization services at public health
clinics to sustain high levels of vaccine coverage. Childhood
immunizations are one of the most cost-effective public health
interventions, saving 42,000 lives and preventing 20 million cases of
disease annually with an estimated $10.20 in savings for every $1
invested. Increased funding would expand vaccine purchase grants to
State and local health departments to cover the many new vaccines and
expanded recommendations of existing vaccines. Additional funding would
also strengthen State and local infrastructure to support vaccination
programs and increase vaccine uptake rates.
NACCHO opposes the $58 million cut proposed in the President's
budget. While provisions in the Affordable Care Act (ACA) will expand
insurance coverage of vaccines recommended by the Advisory Committee on
Immunization Practices, that doesn't necessarily translate to increased
vaccination by private physicians. Many private insurers do not
reimburse physicians for the full cost of vaccine, nor do they cover
actual administration expenses, causing physicians to stop offering
immunizations. Health departments will continue to need sufficient
funding for vaccinations not covered by the ACA expansions, services to
the underinsured and administrative expenses not reimbursed by
insurance. Additionally, the ACA expansion will not be fully
implemented until 2019 while cuts are being proposed now.
As the Subcommittee drafts the fiscal year 2013 Labor-Health and
Human Services-Education appropriations bill, NACCHO urges
consideration of these recommendations for CDC programs critical to
protecting people and improving the public's health.
______

Prepared Statement of the National Association of Community Health
Centers
Introduction
Chairman Harkin, Ranking Member Shelby, and Distinguished Members
of the Subcommittee: My name is Dan Hawkins, and I am the Senior Vice
President for Public Policy and Research at the National Association of
Community Health Centers. On behalf of the American health center
community, including the more than 20 million patients served
nationwide by health centers, the 131,660 full-time health center
staff, and countless volunteer board members who serve our centers as
well as the National Association of Community Health Centers, we want
to offer our deep thanks and appreciation for this Subcommittee's
strong bipartisan support of health centers. I also appreciate the
opportunity to submit testimony for the committee to review as you
craft the fiscal year 2013 Labor-Health and Human Services-Education
and Related Agencies appropriations bill.
Health Centers--General Background
Health Centers are locally owned nonprofit entities that provide
primary medical, dental, and behavioral healthcare, along with pharmacy
and a variety of enabling and support services to more than 20 million
patients today. Currently, there are more than 1,200 health centers
serving as medical homes at more than 8,000 sites in rural and urban
underserved communities nationwide, including as you know, in the
States represented by the members of this Subcommittee.
By statute and mission, health centers are located in a medically
underserved area or serve a medically underserved population and
provide comprehensive primary care services to all community residents
regardless of insurance status or ability to pay, while offering care
on a sliding fee scale. This has enabled health centers to become
healthcare homes to the medically underserved and our Nation's most
vulnerable populations
Health centers also have a unique connection to the health needs of
their communities as they are directed by patient-majority boards,
ensuring that care is locally controlled and responsive to each
individual community.
Health centers specialize in providing high-quality, cost-effective
primary and preventive healthcare to their patients. Utilizing the
unique health center model, health centers are able to save the entire
health system, including the Government and taxpayers, approximately
$24 billion annually by keeping patients out of costlier healthcare
settings, such as emergency departments. Indeed, countless published
studies over many decades have demonstrated that health centers are a
proven cost saver. Studies have also proven that health centers improve
the health status in communities, reduce emergency room use, and
eliminate health disparities amongst their patients. Additionally,
health centers serve as small businesses and economic drivers in their
communities creating 200,000 jobs in just 2009.
Fiscal Year 2012 Funding Background
Thanks to the tireless efforts of this Subcommittee, in fiscal year
2012 health centers received $2.8 billion in total program funding.
This includes $1.6 billion in discretionary funding and $1.2 billion in
mandatory funding for health centers through the Affordable Care Act
for a total increase of $200 million above fiscal year 2011.
A portion of this increase will go toward funding some of the over
1,800 applications for health center expansion currently pending at
HRSA. We anticipate this will mean health centers opening in over 200
communities where primary care is currently scarce or non-existent. We
want to again thank the Subcommittee for their support which is now
being translated into real healthcare for many of our fellow Americans
who currently go without access to even basic healthcare.
Overwhelming Demand for Accessible Primary Care
And yet, even with this tremendous new investment, there is still a
pressing need for access to primary care services in communities across
the country. As we recently documented in a new report entitled: Health
Wanted, the State of Unmet Need for Primary Health Care in America
(``Health Wanted''), the demand for primary care far exceeds supply all
across our Nation. Health Wanted documents the principal barriers to
care: affordability, accessibility, and availability. Within these
three categories, specific hurdles to accessing primary care include
lack or type of insurance, limited income, distance, and other factors
that leave individuals, or whole communities, without care. As Health
Wanted demonstrates, when health centers locate in underserved areas,
they overcome these barriers using the unique health center model,
improving health and producing documented health system savings. The
report also highlights the multiple indicators, including health
outcomes, that make the case that many more communities still need a
health center, and that many of those communities with a health center
have greater needs than the health center can meet with existing
funding levels.
Recent application cycles bear out the research and show that
health centers are striving to meet this demand for primary care. Right
now, over 1,800 health center expansion applications are pending at
HRSA, including:
--More than 700 new health center applications that remain unfunded.
These are communities with no health center and a documented
shortage of primary care access.
--More than 1,100 applications from existing Health Centers for
expanded medical, oral and behavioral health, pharmacy, and
vision service capacity based on identified unmet need in their
communities remain unfunded.
--129 communities without a Health Center but with documented need
have received funding for planning grants, and most will soon
be ready to apply to be funded for a new Health Center in their
community.
Health centers are clearly ready to do more to ensure all Americans
have access to primary and preventive healthcare services. We look
forward to working with this Subcommittee to translate this readiness
into a reality.
Fiscal Year 2013 Request
The President's proposed fiscal year 2013 Health Resources and
Services Administration (HRSA) fiscal year 2013 budget proposal
provides $1.58 billion in discretionary funding for the Health Centers
program. Together with the $1.5 billion in fiscal year 2013 mandatory
funding available for health centers, health centers could receive a
net increase of $300 million in total programmatic funding for fiscal
year 2013 equaling total funding of $3.1 billion.
We strongly support the President's proposed funding level of $3.1
billion for health centers, but we are very concerned about the
administration's proposal to hold back $280 million of the total
proposed increase of $300 million and instead spread out health center
growth over a longer period of time. This proposal does not recognize
the great need outlined above for access to the very primary care
services provided in health centers. In addition, health centers are
looking ahead to 2014, when the demand for primary care is expected to
soar as millions receive health coverage for the first time, many of
them living in the very communities we serve. The experience of health
centers in Massachusetts tells us that health centers will become the
healthcare home for many of these new patients. We must begin to create
the capacity to serve these patients now. If primary care is not
available in the communities where the newly insured live, they will
access care elsewhere, most likely the emergency room or hospital, when
they are sicker. This will mean poorer health for these patients and
much higher costs for the system.
Health centers do, however, share the concern of the
administration, and many members of this Subcommittee, over the funding
cliff facing the Health Centers program in fiscal year 2016 when the
mandatory funding from ACA is slated to end. If not remedied, health
centers and the thousands of communities and millions of patients they
serve could face a serious threat. We want to work with members of this
Subcommittee to forge a bipartisan solution that averts this scenario.
Health Centers are respectfully requesting a total of no less than
$3.1 billion in funding for the Health Center program. However, instead
of holding back funding, we propose that the entire increase be used
immediately to provide for the expansion of care to 2.5 million new
patients. We also urge the Subcommittee to consider the long-term
stability and viability of the program, and the coming cliff in
funding, while ensuring its continued growth which is so desperately
needed.
Conclusion
We understand this Subcommittee will have to make many difficult
budgetary decisions as you work within the funding limits set for the
fiscal year 2013 Labor-Health and Human Services-Education
appropriations bill. We understand that will be no easy task, but we
ask you to keep in mind that health centers have continually proven to
be a worthwhile investment by delivering affordable healthcare to those
who need it most, while generating savings to our health system. We are
deeply grateful for your longstanding leadership and ask for the
Subcommittee's continued support for the Health Center program.
Thank you for your consideration.
______

Prepared Statement of the National Association of Clinical Nurse
Specialists
The National Association of Clinical Nurse Specialists (NACNS) is a
national organization that exists to enhance and promote the unique,
high value contribution of the clinical nurse specialist to the health
and well-being of individuals, families, groups, and communities, and
to promote and advance the practice of nursing. There are an estimated
72,000 registered nurses that have the education and credentials to
practice as a clinical nurse specialist. NACNS supports funding for
nursing education and training provided through the Nursing Workforce
Development programs, authorized under Title VIII of the Public Health
Service Act (42 U.S.C. 296 et seq.). NACNS also supports funding for
research initiatives at the National Institute of Nursing Research
(NINR) under the National Institutes of Health (NIH), and investment in
the Nurse-Managed Health Clinics, authorized under Title III of the
Public Health Service Act (42 U.S.C. 254c-1a.)
Clinical Nurse Specialists (CNSs) are licensed registered nurses
who have graduate preparation (Master's or Doctorate) in nursing as a
Clinical Nurse Specialist. They are Advanced Practice Registered Nurses
(APRNs) in a specialized area of nursing practice in many areas,
including but not limited to: primary care, pediatrics, geriatrics,
women's health, critical care, emergency room, specific conditions,
such as diabetes or oncology, psychiatry and rehabilitation. In
addition to providing direct patient care, Clinical Nurse Specialists
influence care outcomes by providing expert consultation for nurses,
physicians, hospital administrators and other colleagues to implement
improvements in healthcare delivery systems. Their leadership has led
to reduced costs and increased quality of care, such as:
--Reduced Hospital Costs and Length of Stay;
--Reduced Frequency of Emergency Room Visits;
--Shortened Hospital Stays;
--Improved Pain Management Practices;
--Increased Patient Satisfaction with Nursing Care; and
--Reduced Medical Complications in Hospitalized Patients.
nursing workforce development programs
The Nursing Workforce Development programs have supported the
supply and distribution of qualified nurses to meet our Nation's
healthcare needs since 1964. Since its inception, Title VIII programs
have supported over hundreds of thousands of nurses from entry-level
preparation through graduate study, and provide support for
institutions that educate nurses for practice in rural and medically
underserved communities. Between fiscal year 2005 and fiscal year 2010
alone, Title VIII programs have supported over 400,000 nurses and
nursing students as well as numerous academic nursing institutions and
healthcare facilities. Today, the Title VIII programs are essential to
solving the looming national nursing shortage.
The National Association of Clinical Nurse Specialists respectfully
request $251 million for the Nursing Workforce Development programs
authorized under Title VIII of the Public Health Service Act in fiscal
year 2013. Last year, your Subcommittee provided a significant funding
boost for Title VIII that helped support the Loan Repayment program and
Scholarship and Nurse Faculty Loan program. These increases will
bolster the pipeline of nurses and nurse faculty, which is so critical
to reversing the nursing shortage. We feel it is extremely important to
fund these critical programs. This funding not only increases the much
needed number of nurses but allows individuals to pursue a career in
nursing, contribute to the healthcare needs of their community and
build a career to support them and their families in the future.
The Advanced Education Nursing, Nursing Workforce Diversity, Nurse
Education, Practice, and Retention, and Comprehensive Geriatric
Education programs expand nursing school capacity and increase patient
access to care. Below is a description of these four critical programs.
--Advanced Education Nursing (AEN) Grants (Sec. 811) support the
preparation of RNs in master's and doctoral nursing programs.
The AEN grants help to prepare our Nation's nurse
practitioners, clinical nurse specialists, nurse midwives,
nurse anesthetists, nurse educators, nurse administrators,
public health nurses, and other nurse specialists requiring
advanced education. In fiscal year 2008 (most current data
available), these grants supported the education of 5,649
students.
--AEN Traineeships assist graduate nursing students by providing
full or partial reimbursement for the costs of tuition,
books, program fees and reasonable living expenses. In
fiscal year 2008, this funding helped support 6,675
graduate nurses and APRNs.
--Nurse Anesthetist Traineeships (NAT) support the education of
students in nurse anesthetist programs. In some States,
Certified Registered Nurse Anesthetists (CRNAs) are the
sole anesthesia providers in almost 100 percent of rural
hospitals. Much like the AEN Traineeships, the NAT provides
full or partial support for the costs of tuition, books,
program fees, and reasonable living expenses. In fiscal
year 2008, the program supported 2,145 future CRNAs.
--Workforce Diversity Grants (Sec. 821) prepare disadvantaged
students to become nurses. This program awards grants and
contract opportunities to schools of nursing, nurse managed
health centers, academic health centers, State or local
governments, and nonprofit entities looking to increase access
to nursing education for disadvantaged students, including
racial and ethnic minorities under-represented among RNs. In
fiscal year 2008, the program supported 11,638 students.
--Nurse Education, Practice, and Retention Grants (Sec. 831) help
schools of nursing, academic health centers, nurse-managed
health centers, State and local governments, and healthcare
facilities strengthen programs that provide nursing education.
In fiscal year 2008, the priority areas under this program
supported 42,761 with an additional 455 students supported by
the Integrated Nurse Education Technology program.
--Comprehensive Geriatric Education Grants (Sec. 855) are awarded to
schools of nursing or healthcare facilities to better provide
nursing services for the elderly. These grants are used to
educate RNs who will provide direct care to older Americans,
develop and disseminate geriatric curriculum, prepare faculty
members, and provide continuing education. In fiscal year 2008,
this program supported 6,514 nurses and nursing students.
national institute of nursing research
The National Association of Clinical Nurse Specialists respectfully
requests $150 million for the National Institute of Nursing Research in
fiscal year 2013. The NINR funds research that lays the groundwork for
evidence-based nursing practice. Nurse-scientists at NINR examine ways
to improve models of care to deliver safe, high quality, and cost-
effective health services to the Nation. It is critical that we look
toward the prevention aspect of healthcare as the vehicle for saving
our system from further financial burden, and the work of NINR supports
this through research related to care management of patients during
illness and recovery, reduction of risks for disease and disability,
promotion of healthy lifestyles, enhancement of quality of life for
those with chronic illness, and care for individuals at the end of
life.
nurse-managed health clinics: expanding access to care
The National Association of Clinical Nurse Specialists respectfully
requests $20 million for the Nurse-Managed Health Clinics authorized
under Title III of the Public Health Service Act in fiscal year 2013.
NMHCs are healthcare delivery sites managed by APRNs and are staffed by
an interdisciplinary health provider team that may include physicians,
social workers, public health nurses, and therapists. These clinics are
often associated with a school, college, university, department of
nursing, federally qualified health center, or independent nonprofit
healthcare agency. NMHCs serve as critical access points to keep
patients out of the emergency room, saving the healthcare system
millions of dollars annually. The NMHCs provide care to patients in
medically underserved regions of the country, including rural
communities, Native American reservations, senior citizen centers,
elementary schools, and urban housing developments.
Without an adequate supply of nurses to care for our Nation,
including our growing aging population, the healthcare system is not
sustainable. The NACNS requests $251 million in fiscal year 2013 for
the HRSA Nursing Workforce Development programs, $150 million for NINR
and $20 million for the Nurse-Managed Health Clinics authorized under
Title III of the Public Health Service Act in fiscal year 2013 to
ensure access to quality care provided by America's nursing workforce
______

Prepared Statement of the National Alliance for Eye and Vision Research
The National Alliance for Eye and Vision Research (NAEVR) requests
fiscal year 2013 NIH funding of at least $32 billion, which reflects a
$1.38 billion, or 4.5 percent increase over fiscal year 2012, which
consists of biomedical inflation of 2.8 percent plus modest growth, and
is necessary since:
--After nearly a decade of budgets below biomedical inflation, NIH's
inflation-adjusted funding is close to 20 percent lower than
fiscal year 2003.
--Even before adjusting for inflation, enacted spending bills in
recent years have cut the NIH budget. The looming sequestration
mandated by the Budget Control Act threatens further cuts,
estimated by the Congressional Budget Office (CBO) at 8 percent
in fiscal year 2013 alone.
NIH, our Nation's biomedical research enterprise, is unique in
that:
--Its basic and clinical research has helped to understand the basis
of disease, thereby resulting in innovations in healthcare to
save and improve lives.
--Its research serves an irreplaceable role that the private sector
could not duplicate.
--It has been shown through several studies to be a major force in
the economic health of communities across the Nation. The
latest United for Medical Research report estimates that NIH
funding supported more than 432,000 jobs in 2011, directly or
indirectly, and generated more than $62.1 billion in economic
activity.
NAEVR requests National Eye Institute (NEI) funding at $730
million, commensurate with the overall NIH funding increase, especially
since:
--Proposed fiscal year 2013 NEI funding of $693 million reflects
little more than 1 percent of the $68 billion annual cost of
eye disease/vision impairment in the United States.
--The proposed $693 million level is a $14 million cut since fiscal
year 2010, translating into 40 research project grants--any one
of which could have cured blindness.
--In 2009, Congress spoke volumes in passing S. Res. 209 and H. Res.
366, which designated 2010-2020 as The Decade of Vision, in
which the majority of 78 million Loomers will turn 65 years of
age and face greatest risk of aging eye disease. A cut, level
funding, or even an inflationary increase is not sufficient for
NEI to meet the vision challenges presented by the ``Silver
Tsunami.''
Congress must improve upon the President's fiscal year 2013
request, since it cuts NEI funding by $8.86 million, or 1.2 percent
below fiscal year 2012, which results in funding close to the base
fiscal year 2009 level.
Although the President's budget request level-funds NIH, it
proposes to cut NEI by $8.8 million. Although most of this cut reflects
the NIH Office of AIDS Research pulling its funding from the NEI's
Studies of Ocular Implications of AIDS (SOCA) clinical trials, which
established the efficacy of combination antiviral drug therapy in
treating cytomegalorvirus (CMV) retinitis, the resulting total NEI
funding of $693 million reflects a level just slightly higher than that
in fiscal year 2009, prior to the addition of American Recovery and
Reinvestment Act (ARRA) funding. Although the NEI's congressional
justification (CJ) notes that this funding level will still enable NEI
to increase Research Project Grant (RPG) funding by $3 million, it will
still cut training programs and Research and Development contracts.
The fiscal year 2013 level also results in a net $14 million loss
of NEI funding since its highest level in fiscal year 2010, which
translates into about 40 research grants--any one of which could hold
the promise of curing a blinding eye disease. NEI is already facing
enormous challenges in this Decade of Vision 2010-2020. Each day, from
2011 to 2029, 10,000 citizens will turn 65 and be at greatest risk for
eye disease, the fast growing African-American and Hispanic populations
will experience a disproportionately higher incidence of eye disease,
and the epidemic of obesity will significantly increase the incidence
of diabetic retinopathy.
NAEVR requests NEI funding at $730 million, reflecting biomedical
inflation plus modest growth commensurate with that of NIH overall,
since our Nation's investment in vision health is an investment in
overall health. NEI's breakthrough research is a cost-effective
investment, since it is leading to treatments and therapies that can
ultimately delay, save, and prevent health expenditures, especially
those associated with the Medicare and Medicaid programs. It can also
increase productivity, help individuals to maintain their independence,
and generally improve the quality of life, especially since vision loss
is associated with increased depression and accelerated mortality.
The very health of the vision research community is also at stake
with a decrease in NEI funding. Not only will funding for new
investigators be at risk, but also that of seasoned investigators,
which threatens the continuity of research and the retention of trained
staff, while making institutions more reliant on bridge and
philanthropic funding. If an institution needs to let staff go, that
usually means a highly-trained person is lost to another area of
research or an institution in another State, or even another country.
Fiscal year 2013 NIH funding of at least $32 billion, NEI at $730
million lets NEI build upon its past record of basic and translational
research.
In late June 2010, NIH Director Francis Collins, M.D., Ph.D.
recognized NEI's leadership in translational research at an NEI-
sponsored Translational Research and Vision Conference. Just 2 weeks
earlier, Dr. Collins testified before the House Energy and Commerce
Committee, stating that:

With fiscal year 2013 funding at $730 million, NEI can build upon
its past research, including:
--Genetic Basis of Eye Disease.--As NEI Director Paul Sieving, M.D.,
Ph.D. has stated, of the more than 2,000 genes identified to
date, more than 500, or one-quarter, are associated with both
common and rare eye diseases. By further understanding the
genetic basis of eye disease, NEI can study underlying disease
mechanisms and develop appropriate diagnostic and therapeutic
applications for such blinding eye diseases as AMD, glaucoma,
and retinitis pigmentosa (RP).
--NEI's AMD Gene Consortium, which consolidates 15 international
Genome Wide Association Studies (GWAS) representing over
8,000 patients, has validated 8 previously known gene
variants and identified 19 new variants.
--NEI's Glaucoma Human Genetics Collaboration (NEIGHBOR) has
identified the first risk variant in a gene thought to play
a role in the development of the optic nerve head, the
degeneration of which leads to glaucoma and loss of
peripheral vision, and then ultimately blindness.
--The NEI-led human gene therapy clinical trial for
neurodegenerative eye disease Leber Congenital Amaurosis
(LCA) has resulted to date in 15 patients being treated and
experiencing visual improvement. NEI's pioneering work, as
well as subsequent refinement of gene therapy techniques,
is enabling further research into ocular gene therapy
through the launch of NEI-funded clinical trials for AMD,
choroideremia, Stargardt disease, and Usher Syndrome. The
latter three neurodegenerative diseases occur in early
childhood and progressively destroy the retina, leading to
vision loss and blindness and resulting in a lifetime of
direct medical and indirect support costs. NEI is also
funding pre-clinical safety trials for human gene therapy
for RP, juvenile retinoschisis (``splitting'' of the
retina, resulting in vision loss), and achromatopsia
(affecting color perception and visual acuity).
--Diabetic Eye Disease.--NEI's Diabetic Retinopathy Clinical Research
(DRCR) Network found that laser treatment for diabetic macular
edema, when combined with anti-angiogenic drug treatment, is
more effective than laser treatment alone and will
revolutionize the standard of care in place the past 25 years.
With the National Institute for Diabetes and Digestive and
Kidney Diseases (NIDDK) leading a new NIH strategic plan to
combat diabetes, NEI's research through its various diabetic
eye disease networks over the past 40 years--in partnership
with NIDDK--will be more important than ever.
Blindness and vision loss is a growing public health problem that
individuals fear and would trade years of life to avoid.
The NEI estimates that more than 38 million Americans age 40 and
older experience blindness, low vision, or an age-related eye disease
such as AMD, glaucoma, diabetic retinopathy, or cataracts. This is
expected to grow to more than 50 million Americans by year 2020.
Although the NEI estimates that the current annual cost of vision
impairment and eye disease to the United States is $68 billion, this
number does not fully quantify the impact of indirect healthcare costs,
lost productivity, reduced independence, diminished quality of life,
increased depression, and accelerated mortality. NEI's proposed fiscal
year 2013 funding of $693 million reflects just a little more than 1
percent of this annual costs of eye disease. The continuum of vision
loss presents a major public health problem, as well as a significant
financial challenge to the public and private sectors.
Vision loss also presents a real fear to most citizens:
--In public opinion polls over the past 40 years, Americans have
consistently identified fear of vision loss as second only to
fear of cancer.
--NEI's ``Survey of Public Knowledge, Attitudes, and Practices
Related to Eye Health and Disease'' reported that 71 percent of
respondents indicated that a loss of their eyesight would rate
as a ``10'' on a scale of 1 to 10, meaning that it would have
the greatest impact on their day-to-day life.
--In patients with diabetes, going blind or experiencing other vision
loss rank among the top four concerns about the disease. These
patients are so concerned about vision loss diminishing their
quality of life that those with nearly perfect vision (20/20 to
20/25) would be willing to trade 15 percent of their remaining
life for ``perfect vision,'' while those with moderate
impairment (20/30 to 20/100) would be willing to trade 22
percent of their remaining life for perfect vision. Patients
who are legally blind from diabetes (20/200 to 20/400) would be
willing to trade 36 percent of their remaining life to regain
perfect vision.
NAEVR urges Congress to fund NIH and NEI at funding levels of at
least $32 billion and $730 million, respectively, which ensures the
momentum of research and retention of trained personnel.
about naevr
The National Alliance for Eye and Vision Research (NAEVR), which
serves as the ``Friends of the NEI,'' is a 501(c)4 nonprofit advocacy
coalition comprised of 55 professional (ophthalmology and optometry),
patient and consumer, and industry organizations involved in eye and
vision research. Visit NAEVR's Web site at www.eyeresearch.org.
______

Prepared Statement of the National Association of Nutrition and Aging
Services Programs
On behalf of the National Association of Nutrition and Aging
Services Programs (NANASP), we thank you for providing an opportunity
to submit testimony as you consider an fiscal year 2013 Labor, Health
and Human Services, Education, and Related Agencies appropriations
bill. NANASP is a national membership organization of nearly 1,000
members working to provide older adults healthful food and nutrition
through community-based services. We have 5 members from Montana and
about 30 members in Connecticut who in turn serve hundreds of older
adults every day.
We are writing today to urge you to provide a much needed increase
in funding for the senior nutrition programs in the Older Americans
Act. These programs consist of the congregate and home-delivered (Meals
on Wheels) nutrition programs along with the Nutrition Services
Incentive Program. Together, these programs are known as the Elderly
Nutrition Programs and all three keep millions of vulnerable older
adults healthy and independent in their homes and communities by
providing nutritious meals and needed socialization.
These programs were forced to endure level funding in fiscal year
2012 and if the President's budget was to be adopted, the same fate
would occur in fiscal year 2013. Level funding is fine if costs
associated with a program and the need for a program stay level as
well. That is not the case with the Elderly Nutrition Programs. USDA
has estimated that food costs are expected to increase by 3 percent. In
addition, the price of gasoline has risen dramatically (up 12 percent
since last year) as well as related energy costs which go to the heart
of the nutrition programs that operate in congregate sites and who
provide home-delivered meals on a daily basis. These costs have also
reduced the ranks of volunteers for our programs. On the need side,
many of our programs continue to have waiting lists or unmet needs.
We would also proudly point out that the Elderly Nutrition Programs
represent a sound and solid investment of the Federal dollar. Our
programs keep seniors at home and in the community and out of nursing
homes and hospitals because they help prevent hunger and malnutrition.
In the congregate and home-delivered meal programs, a senior can be fed
for 1 year for about $1,300. This $1,300 is the same as the cost of 6
days in a nursing home or 1 day of hospitalization. In addition, for
every $1 spent on home-delivered meals, an additional $3.35 is
contributed from State, local, and private funds.
The Elderly Nutrition Programs celebrate their 40th anniversary
this year. They have more than proven their value. It is not time to
pull back on the commitment of the Older Americans Act. We urge you to
provide the nutrition programs with a modest increase of at least 3
percent to allow them to keep up with inflation. Level funding in
reality is a reduction. Only if there is absolutely no other choice
then do we urge level funding be maintained for fiscal year 2013.
In closing, another important priority for NANASP is the Senior
Community Service Employment Program SCSEP. The President's fiscal year
2013 budget once again proposes funding SCSEP at $448 million, which
represents a 45 percent cut which was first enacted in fiscal year
2011. The SCSEP program, also authorized by the Older Americans Act, is
the only Federal job training program targeted for older adults seeking
employment and training assistance. Many SCSEP participants work in
programs that serve older adults, including the Elderly Nutrition
Programs. We urge you to restore funding for the SCSEP program to
$600.4 million, the pre-American Recovery and Reinvestment Act funding
level.
Thank you for the opportunity to submit this testimony. Please feel
free to contact us with any questions or if you need additional
information.
______

Prepared Statement of the National AHEC Organization
The members of the National AHEC Organization (NAO) are pleased to
submit this statement for the record recommending $33.145 million in
fiscal year 2013 for the Area Health Education Center (AHEC) program
authorized under Titles VII of the Public Health Service Act and
administered through the Health Resources and Services Administration
(HRSA). The NAO is the professional organization representing AHECs.
The AHEC Program is an established and effective national primary care
training network built on committed partnerships of 53 medical schools
and academic centers. Additionally, 253 AHEC centers within 48 States
and tens of thousands of community practitioners are affiliated with
the AHEC's national clinical training network
AHEC is one of the Title VII Health Professions Training programs,
originally authorized at the same time as the National Health Service
Corps (NHSC) to create a complete mechanism to provide primary care
providers for Community Health Centers (CHCs) and other direct
providers of healthcare services for underserved areas and populations.
The plan envisioned by creators of the legislation was that the CHCs
would provide direct service. The NHSC would be the mechanism to fund
the education of providers and supply providers for underserved areas
through scholarship and loan repayment commitments. The AHEC program
would be the mechanism to recruit providers into primary health
careers, diversify the workforce, and develop a passion for service to
the underserved in these future providers, i.e. Area Health Education
Centers are the workforce development, training and education machine
for the Nation's healthcare safety-net programs. The AHEC program is
focused on improving the quality, geographic distribution and diversity
of the primary care healthcare workforce and eliminating the
disparities in our Nation's healthcare system.
AHECs develop and support the community based training of health
professions students, particularly in rural and underserved areas. They
recruit a diverse and broad range of students into health careers, and
provide continuing education, library and other learning resources that
improve the quality of community-based healthcare for underserved
populations and areas.
The Area Health Education Center program is effective and provides
vital services and national infrastructure. Nationwide, over 379,000
students have been introduced to health career opportunities, and over
33,000 mostly minority and disadvantaged high school students received
more than 20 hours each of health career exposure. Over 44,000 health
professions students received training at 17,530 community-based sites,
and furthermore; over 482,000 health professionals received continuing
education through AHECs. AHECs perform these education and training
services through collaborative partnerships with Community Health
Centers (CHCs) and the National Health Service Corps (NHSC), in
addition to Rural Health Clinics (RHCs), Critical Access Hospitals,
(CAHs), Tribal clinics and Public Health Departments.
Justification for Recommendations
The AHEC network is an economic engine that fuels the recruitment,
training, distribution, and retention of a national health workforce.
AHEC stands for JOBS.
--Primary Care services improve the health of the population, and
therefore increase productivity of the U.S. workforce, while at
the same time, contain costs within the U.S. healthcare system.
Primary care practitioners are the front-line in prevention of
disease, providing cost savings in the United States healthcare
system.
--AHECs are critical in the recruitment, training, and retention of
the primary care workforce.
--Research has demonstrated that the community-training network is
the most effective recruitment tool for the health professions
and those who teach remain longer in underserved areas and
communities.
--AHECs are in almost every county in the United States.
--With the aging and growing population, the demand for primary care
workforce is far outpacing the supply.
--AHECs continue to educate and train current workforce, as well as
recruiting and preparing future workforce
--In 2010, AHECs trained 476,585 Health Professionals in 48 States in
13,842 Health Professions Shortage Areas (HPSAs)--26.4 percent
of those trained were physicians (125,818).
The AHEC network's outcomes are the backbone of the Nation's
community-based health professions training, with a focus on training
primary care workforce.
--HRSA has encouraged functional linkage between Bureau of Primary
Care and Bureau of Health Professions Programs. AHECs have
partnerships with over 1,000 Community Health Centers
nationally to recruit, train, and retain health professionals
who have the cultural and linguistic skills to serve in HRSA
designated underserved areas.
--AHECs via a cooperative agreement with HRSA are training 10,000
primary care providers throughout the county to address OIF/
OEF/OND Veteran's mental health, substance abuse, traumatic
brain injury and post-traumatic stress for those not utilizing
the VA system
______

Prepared Statement of the National Assembly on School Based Health Care
I am grateful for this opportunity to submit written testimony on
behalf of the National Assembly on School Based Health Care (NASBHC),
an organization representing the interests of school-based health
centers and the children and adolescents who depend upon them.
More than 1,900 school-based health centers provide comprehensive
primary healthcare for nearly 2 million students--regardless of their
ability to pay--and in a location that meets children and adolescents
where they are: at school. School-based health centers are a common-
sense solution to address the severe gaps in educational achievement,
healthcare access, and future employment potential among children and
adolescents. School-based health centers are on the frontlines tackling
challenging and expensive health crises like diabetes, asthma, mental
health and oral health. School-based health centers keep students
healthy and learning.
The Patient Protection and Affordable Care Act (Public Law 111-148;
section 4101(b)), includes a Federal authorization for school-based
health center operations. The success of a Federal school-based health
center authorization was a huge and historical victory for vulnerable
children and adolescents; now, the Nation's school-based health centers
need funds to be appropriated in order to continue providing critical
health services to our Nation's children and adolescents.
The National Assembly on School Based Health Care respectfully asks
the Subcommittee to provide $50 million in funding for school-based
health centers for fiscal year 2013.
At school-based health centers, developmentally appropriate health
services are provided by qualified health professionals, incorporating
the principles and practices of pediatric and adolescent healthcare
recommended by the American Medical Association, the American Academy
of Pediatrics, and the American Association of Family Physicians.
School-based health centers are first-hand witnesses to factors
that impact student health and academic achievement--including
bullying, school violence, depression, stress, and poor eating habits--
circumstances often missed by outside health providers. Working within
the school building, school-based health center staff members are
uniquely poised to address the many challenges students bring to the
classroom. Access to competent and appropriate healthcare leads to
positive academic outcomes as shown in a recent study proving that
school-based health centers have positive impacts on student
achievement--particularly increasing grade point averages and
attendance.
Sadly, many school-based health centers are struggling to keep
their doors open. Diminished public and private support, layoffs, and
hiring freezes have reduced the number of providers on site to deliver
care. Additionally, school-based health centers have historically faced
limited patient revenue streams despite decades of providing services
to Medicaid and CHIP-covered children: the gap between cost and actual
revenue paid by Medicaid is quite steep in some communities. Average
payment rates for SBHC visits by Medicaid enrollees range widely. In
addition, many developmentally appropriate services--mental health,
heath education, and behavioral risk reduction counseling--are
oftentimes either not reimbursed or, if so, at a fraction of the cost
of actual care.
Restricted and diminishing revenue to support the delivery of
health services to kids through school-based health centers jeopardizes
the health and well-being of our Nation's children. Examples of funding
limitations include:
--New York.--Suffolk County Department of Health Services suffered
reduction in funding and needed to reduce operations. Eastern
BOCES School Based Health Center, supported by the county,
closed on July 1, 2011. Even worse, UHS Chenango Memorial
Hospital decided to close 10 comprehensive school-based health
centers which include 5 dental programs prior to the start of
this school year.
--Illinois.--A survey taken by the Illinois Coalition for School
Health Centers found that seven school-based health centers in
that State have cut programs or staff over the last 4 years due
to financial constraints.
--Arizona.--In January 2009, 10 rural school-based health care
centers were shut down because of lack of funding support at
the following schools: Aquila Elementary, Arlington Elementary,
Buckeye High School, Harquahala Valley community, Liberty
Elementary, Paloma Elementary, Palo Verde Elementary, Ruth
Fisher Elementary, Rainbow Valley Elementary, and Tolleson High
School.
School-based health centers need direct Federal financial support
for operations to continue delivering quality comprehensive services to
our Nation's children and adolescents.
Thanks to the school-based health center authorization and the path
it creates toward future reform, if funded, fewer school-based health
centers will be forced to shut their doors because of State and local
budget cuts, and more communities that desire to open a health clinic
at their school will have the critical resources to do so. In her
statement at the Coalition for Community School's national forum,
Secretary Sebelius agreed: ``We are thrilled that part of the [health
reform] legislation calls for an expanded foot print of school-based
health clinics . . . I can't think of a better way to deliver primary
care and preventive care to not only students but their families than
through school-based clinics.''
We are pleased that school-based health centers are, at last, a
federally authorized program. Until funds are appropriated, however,
there remains no Federal support for their operations. We ask that
funds be allocated this year to enable school-based health centers to
keep their doors open, and to give critical resources to communities
that desire to open health clinics at their schools.
We recognize that there has been some confusion about capital money
allocated to school-based health centers in the Affordable Care Act
under section 4101(a). These funds, although important, are limited to
capital improvements, land acquisition, and equipment purchases.
Expenditures for care and personnel are specifically excluded.
We respectfully request that a $50 million appropriation be
provided for the school-based health center authorization for fiscal
year 2013.
______

Prepared Statement of the National Association of State Comprehensive
Health Insurance Plans
The National Association of State Comprehensive Health Insurance
Plans (NASCHIP) submits this testimony to urge your support for a
fiscal year 2013 appropriation of $55 million for the State High Risk
Pool Funding Extension Act of 2006.
This funding level would be what our programs received in fiscal
year 2011. Our programs which operate in 35 States (including Iowa and
Alabama) and serve more than 200,000 persons with pre-existing
conditions have been growing consistently year over year. Even with the
advent of the Pre-Existing Condition Insurance Plans (PCIP) authorized
under the Patient Protection and Affordable Care Act to serve
individuals with pre-existing conditions, State pool enrollment
continues to grow across the country. This is in part due to continued
erosion of employer-sponsored coverage.
Fiscal year 2012 funding to support the 35 State high risk pools
was cut by $11 million or 25 percent. These cuts resulted in higher
premiums and some of our most vulnerable citizens finding themselves
unable to afford the healthcare services they need. Nearly half of all
State high risk pools depend on the funding to directly buy-down
premiums and other cost shares for low income pool members. Continuing
with such dramatic cuts to this critical funding will ensure that more
low income plan members may have to drop coverage altogether as
premiums will be unaffordable.
Contrast this to the lagging enrollment numbers for the totally
separate PCIP program under the Affordable Care Act (with $5 billion in
funding). The simple fact is not only do our State high risk pool
programs predate the PCIP program but they are also distinct from PCIP
because of the subsidy we provide in one-third of our States to low-
income individuals offering discounts of between 18 and 67 percent.
The administration's budget proposal for fiscal year 2013 slashes
funding to $22 million, another 50 percent reduction. The
administration's justification for this draconian cut is based on the
patently false premise that only 6 months of funding is needed for this
program is fiscal year 2013 because State exchanges will be fully
operational and there will no need for the State high risk pool
program. That is a misreading on the reality of the situation.
Individuals covered by high risk pools will not be able to access
insurance in the Exchange marketplace until January 1, 2014 at the
earliest. Therefore, our State high risk pools will require funding for
the entire fiscal year 2013 as they will be operational until at least
December 31, 2013. State exchanges will not be ready to insure State
high-risk pools members until after the close of fiscal year 2013.
Funding must be provided to ensure continuation of coverage through
2013 and a safe transition for these needy individuals in 2014.
The funding level we seek is to simply allow us to continue our
important work for the duration of fiscal year 2013; therefore, our
request is a funding level of $55 million. We suggest as an offset to
support this funding level come with the authority to allow PCIP funds
to be used to support State operational grants and low-income subsidies
for those with preexisting conditions in the 35 States we serve.
Thank you for your consideration and the opportunity to submit this
testimony.
______

Prepared Statement of the National Alliance of State and Territorial
AIDS Directors
The National Alliance of State and Territorial AIDS Directors
(NASTAD) represents the Nation's chief State health agency staff who
have programmatic responsibility for administering HIV/AIDS and viral
hepatitis healthcare, prevention, education, and supportive service
programs funded by State and Federal governments. On behalf of NASTAD,
we urge your support for increased funding for Federal HIV/AIDS and
viral hepatitis programs in the fiscal year 2013 Labor-Health-Education
appropriations bill, and thank you for your consideration of the
following critical funding needs for HIV/AIDS, viral hepatitis and STD
programs in fiscal year 2013. These funding needs support activities
aligned with the goals set forth in the National HIV/AIDS Strategy
(NHAS)--a game-changing blueprint for tackling the Nation's HIV/AIDS
epidemic.
As we are 30 years into the HIV/AIDS epidemic, we must be mindful
that HIV/AIDS is still a crisis in the United States, not just abroad.
HIV/AIDS is an emergency and while there are life-saving medications
that did not exist 20 years ago, there is still no cure, and
approximately 50,000 new infections occur annually. The Nation's
prevention efforts must match our commitment to the care and treatment
of infected individuals. First and foremost we must address the
devastating impact on racial and ethnic minority communities,
particularly African-Americans and Latinos, as well as gay men and
other men who have sex with men of all races and ethnicities, substance
users, women and youth. To be successful, we must expand outreach,
scale-up and consider new and innovative approaches to arrest the
epidemic here at home.
hiv/aids care and treatment programs
The Health Resources and Services Administration (HRSA) administers
the $2.4 billion Ryan White Program that provides health and support
services to more than 500,000 Persons Living with HIV/AIDS (PLWHA).
NASTAD requests a minimum increase of $270.1 million in fiscal year
2013 for State Ryan White Part B grants, including an increase of $79.9
million for the Part B base and $190.2 million for AIDS Drug Assistance
Programs (ADAPs). With these funds States and territories provide care,
treatment and support services to PLWHA, who need access to HIV
clinicians, life-saving and life-extending therapies, and a full range
of wrap-around support services to ensure adherence to complex
treatment regimens. All States have reported to NASTAD a significant
increase in the number of individuals seeking Part B base and ADAP
services.
State ADAPs provide medications to low-income uninsured or
underinsured PLWHA. In fiscal year 2010, over 226,000 clients were
enrolled in ADAPs nationwide. Due to many factors such as unemployment,
economic challenges, increased HIV testing and linkages to care, and
new HIV treatment guidelines calling for earlier therapeutic
treatments, program demand has increased dramatically. Due to emergency
funding for ADAPs throughout fiscal year 2012, the waitlists have
decreased; however, to eliminate waitlists and other cost containment
measures completely, there is still a need for additional funding. As
of April 19, 2012, there are 3,079 individuals are on waiting lists in
10 States to receive their life-sustaining medications through ADAP:
--Florida: 427 individuals;
--Georgia: 1,058 individuals;
--Idaho: 8 individuals;
--Louisiana: 356 individuals;
--Montana: 4 individuals;
--Nebraska: 222 individuals;
--North Carolina: 140 individuals;
--South Carolina: 0 individuals;
--Utah: 0 individuals; and
--Virginia: 864 individuals.
hiv/aids prevention and surveillance programs
One of the major goals of the NHAS is to lower the annual number of
new infections by 25 percent from 56,300 to 42,225 by 2015. In order to
meet this ambitious goal, NASTAD requests an increase of $100 million
above fiscal year 2012 funding levels for State and local health
department HIV prevention and surveillance cooperative agreements in
order to provide comprehensive prevention programs. By providing
adequate resources to State and local health departments to scale up
HIV prevention and surveillance programs, we will be closer to meeting
the NHAS goal of reducing new HIV infections by 25 percent by 2015.
NASTAD is gravely concerned about the unraveling of State public
health HIV prevention infrastructure in an era where averting new HIV
infections is paramount. NASTAD requests that of these funds, $41
million ($27 million for core health department prevention programs and
$14 million for expanded HIV testing) be used to restore funding to
health departments who lost resources through PS12-1201: Comprehensive
Human Immunodeficiency Virus (HIV) Prevention Programs for Health
Departments to fiscal year 2010 levels. The funding should reinstate
Category A: HIV Prevention Programs for Health Departments losses and
Category B: Expanded HIV Testing for Disproportionately Affected
Populations. NASTAD's analysis indicates that 40 jurisdictions
(including 34 States, the District of Columbia, three cities and two
territories) experienced decreases in their core HIV prevention awards
between fiscal year 2011 and fiscal year 2012. In terms of expanded HIV
testing 24 jurisdictions (including 20 States, the District of Columbia
and three cities) experienced a decrease in their awards between fiscal
year 2010 and fiscal year 2012.
NASTAD supports targeting resources to where they are most needed
and innovation in HIV prevention programming. However, since the
funding levels were lower than the previous year and because funds were
shifted to some jurisdictions as a result of a new formula based on
reported HIV cases, dramatic decreases in resources have occurred for
the majority of States. Unfortunately, cuts of this magnitude erode the
capacity of many of States to drive down HIV incidence and link newly
diagnosed individuals to care, both critical goals of the National HIV/
AIDS Strategy. Many health departments are experiencing significant
challenges as they restructure existing programs in reaction to these
funding shifts.
NASTAD also recommends that all jurisdictions be eligible for
expanded testing resources. Additional analyses indicate that
approximately $18 million in additional funds are needed for Category
B, expanded HIV testing, to bring currently funded programs to their
fiscal year 2010 levels (including the MAI and PPHF resources) and fund
the remaining programs at tiered levels based on prevalence. If the
NHAS is to be truly ``national,'' all jurisdictions should receive
resources under Category B. Currently, expanded HIV testing activities
serve disproportionately impacted populations: African-Americans,
Latinos, gay and bisexual men of all races and ethnicities and persons
who inject drugs. Moreover, the program has been an effective way to
implement routine HIV testing in clinical settings--increasing the
number of people who know their HIV status and linking those with HIV
to care and treatment. During the first 3 years of the program
approximately 2.6 million tests were conducted with an estimated 28,000
being confirmed HIV positive. Reducing new HIV infections relies
heavily on ``knowing your status.'' This program should be expanded
with adequate funding to ensure that more individuals learn their HIV
status and are linked to care.
In addition, NASTAD believes an increase of $40 million should be
directed toward critical HIV surveillance efforts. HIV surveillance has
been chronically underfunded in most jurisdictions for over a decade.
As a result, many States cobble together their HIV surveillance
programs with resources leveraged from other programs. With the
significant reallocation of resources to State and local health
departments through FOA PS12-1201 Comprehensive HIV Prevention Programs
for Health Departments, the ability of these health departments to
continue supporting surveillance activities will be greatly diminished.
Additional resources will allow improvements in core surveillance and
expand surveillance for HIV incidence, behavioral risk, and receipt of
care information including CD4 and viral load reporting. HIV
surveillance data are the mechanism through which the success at
achieving the goals of the NHAS will be measured. The completeness of
national HIV surveillance activities is critical to monitor the HIV/
AIDS epidemic and to provide data for targeting with greater precision
the delivery of HIV prevention, care, and treatment services.
viral hepatitis prevention programs
NASTAD requests an increase of $40 million for a total of $59.3
million in fiscal year 2013 for the CDC's Division of Viral Hepatitis
(DVH) for a national testing, education and surveillance initiative as
outlined in the Division's professional judgment budget submitted to
Congress last year. We believe that testing to identify over 3 million
people or 65-75 percent of chronic hepatitis B and C patients who do
not know they are infected is the highest priority for reducing illness
and death related to viral hepatitis. Testing must accompany education
efforts to reach those already infected and at high risk of death and
of spreading the disease. DVH received an increase of $10 million from
the Prevention and Public Health Fund in fiscal year 2012 for the
development of a national screening initiative. NASTAD requests funding
to continue to support the viral hepatitis screening and testing
initiative and encourages the Division to make all currently funded
health departments eligible for funding. Due to the lack of strong
surveillance data for viral hepatitis, it would be impossible to
adequately determine which jurisdictions have the highest incidence or
prevalence of viral hepatitis. Developing a national surveillance
system is the Division's second highest priority. Surveillance is
needed to monitor disease trends and evaluate evidence-based
interventions. Unlike other infectious diseases, viral hepatitis lacks
a national surveillance system. NASTAD requests funding to State adult
viral hepatitis prevention coordinators be increased from $5 to $10
million. Adult Viral Hepatitis Prevention Coordinators are based in
State health departments and implement and integrate testing, education
and surveillance into the existing public health infrastructure. States
and cities receive an average funding award from DVH of $90,000, which
supports a single staff position and is not sufficient for the
provision of core prevention services.
HHS' Viral Hepatitis Action Plan will improve the collaboration and
coordination of the Federal Government's response and implement the
Institute of Medicine's (IOM) expert recommendations on controlling and
preventing viral hepatitis. Funding is needed to support increased
capacity at the HHS Office of the Assistant Secretary for Health (ASH)
for supporting the implementation of the HHS Viral Hepatitis Action
Plan.
syringe exchange programs
NASTAD supports the lifting of the ban on the use of Federal funds
for syringe exchange programs and opposes any Federal actions which ban
or increase the bureaucratic, regulatory and reporting requirements on
syringe access beyond those already in place at the State and local
level. Syringe exchange programs are a crucial aspect of comprehensive
HIV and viral hepatitis prevention services. Sharing used syringes is
the primary reason IDUs become infected with HIV and hepatitis C and
morbidity and mortality rates among IDUs remain disproportionately
high. People who inject drugs bear the highest burden of hepatitis C
(HCV) infection and in some communities as many as 90 percent of IDUs
are infected with chronic HCV. Research has provided overwhelming
evidence that access to sterile syringes is effective in reducing
transmission of HIV, without increasing drug use. The 21-year-old ban
on the use of Federal funds for syringe exchange programs was lifted in
December 2009 when the fiscal year 2010 appropriations bill was signed
into law without this restriction. However, in the fiscal year 2012
Consolidated Appropriations Act, the Federal ban on syringe exchange
programs was reinstated in the Labor-HHS appropriations and Financial
Services appropriations, barring the use of Federal funds for syringe
exchange in the United States and the District of Columbia.
std prevention programs
NASTAD supports an increase of $26.2 million for a total of $180
million in fiscal year 2013 for STD prevention, treatment and
surveillance activities undertaken by State and local health
departments. CDC's Division of STD Prevention has prioritized four
disease prevention goals--Prevention of STD-related infertility, STD-
related adverse pregnancy outcomes, STD-related cancers and STD-related
HIV transmission. CDC estimates that 19 million new infections occur
each year, almost half of them among young people ages 15 to 24. In 1
year, the United States spends over $8 billion to treat the symptoms
and consequences of STDs. Untreated STDs contribute to infant
mortality, infertility, and cervical cancer. Additional Federal
resources are needed to reverse these alarming trends and reduce the
Nation's health spending. The teen pregnancy prevention initiative,
administered through the Office of Adolescent Health should be expanded
to include prevention of HIV and STDs and funded at $130 million.
prevention and public health fund
The Prevention and Public Health Fund (PPHF) tackles critical
epidemics, such as HIV/AIDS and viral hepatitis. The fund is a unique
opportunity to decrease healthcare spending related to HIV/AIDS
treatment and care, and invest in viral hepatitis prevention and
screening efforts. We encourage you to utilize the PPHF to support a
broad testing and screening initiative that would include neglected
diseases such as viral hepatitis in order to capture patients before
they progress in their liver disease and increase costs to public
healthcare systems, as well as HIV/AIDS prevention initiatives.
PPHF is urgently needed to address the many emerging health threats
our country faces through a coordinated, comprehensive, sustainable and
accountable approach to improving health outcomes and curbing costs. It
is essential to the health of Americans that we capitalize on the
opportunity to invest in prevention programs and transform our public
health system. In order to accomplish this, we must maintain the PPHF.
The PPHF was used to offset costs for the Middle Class Tax Relief and
Job Creation Act of 2012, which cut approximately $6.25 billion from
PPHF over the next 10 years. It is imperative that the Prevention and
Public Health Fund is not cut further or used again as an offset for
other programs.
As you contemplate the fiscal year 2013 Labor, HHS and Education
appropriations bill, we ask that you consider all of these critical
funding needs. We thank the Chairman, Ranking Member and members of the
Subcommittee, for their thoughtful consideration of our
recommendations. Our response to the HIV, viral hepatitis and STD
epidemics in the United States defines us as a society, as public
health agencies, and as individuals living in this country. There is no
time to waste in our Nation's fight against these infectious and often
chronic diseases. The Nation's prevention efforts must match our
commitment to the care and treatment of infected individuals.
______

Prepared Statement of the Nursing Community
The Nursing Community is a forum comprised of 59 national
professional nursing membership associations that builds consensus and
advocates on a wide spectrum of healthcare and nursing issues
surrounding practice, education, and research. These 59 organizations
are committed to promoting America's health through the advancement of
the nursing profession. Collectively, the Nursing Community represents
nearly 1 million Registered Nurses (RNs), Advanced Practice Registered
Nurses (APRNs--including certified nurse-midwives, nurse practitioners,
clinical nurse specialists, and certified registered nurse
anesthetists), nurse executives, nursing students, nursing faculty, and
nurse researchers. Together, our organizations work collaboratively to
support a robust investment in the Nursing Workforce Development
programs (authorized under Title VIII of the Public Health Service Act
[42 U.S.C. 296 et seq.]), support research initiatives at the National
Institute of Nursing Research (NINR), and secure authorized funding for
Nurse-Managed Health Clinics (Title III of the Public Health Service
Act) so that our Nation's population receives the highest-quality
nursing services possible.
Demand for Nurses Continues to Grow
According to the Bureau of Labor Statistics' Employment Projections
for 2010-2020, the expected number of practicing nurses will grow from
2.74 million in 2010 to 3.45 million in 2020, an increase of 712,000 or
26 percent. The projections further explain the need for 495,500
replacements in the nursing workforce, bringing the total number of job
openings for nurses due to growth and replacements to 1.2 million by
2020.
Two primary factors contribute to this overwhelming projection.
First, America's nursing workforce is aging. According to the 2008
National Sample Survey of Registered Nurses, over 1 million of the
Nation's 2.6 million practicing RNs are over the age of 50. Within this
population, more than 275,000 nurses are over the age of 60. As the
economy continues to rebound, many of these nurses will seek
retirement, leaving behind a significant deficit in the number of
experienced nurses in the workforce. Second, America's baby boomer
population is aging. It is estimated that over 80 million baby boomers
reached age 65 last year. This population will require a vast influx of
nursing services, particularly in areas of primary care and chronic
illness management. A significant investment must be made in the
education of new nurses to provide the Nation with the nursing services
it demands.
Addressing the Demand: Title VIII Nursing Workforce Development
Programs
For nearly 50 years, the Nursing Workforce Development programs,
authorized under Title VIII of the Public Health Service Act, have
helped build the supply and distribution of qualified nurses to meet
our Nation's healthcare needs. The Title VIII programs bolster nursing
education at all levels, from entry-level preparation through graduate
study, and provide support for institutions that educate nurses for
practice in rural and medically underserved communities. Today, the
Title VIII programs are essential to ensure the demand for nursing care
is met. Between fiscal year 2005 and 2010 alone, the Title VIII
programs supported over 400,000 nurses and nursing students as well as
numerous academic nursing institutions, and healthcare facilities.
The American Association of Colleges of Nursing's (AACN) Title VIII
Student Recipient Survey gathers information about Title VIII dollars
and its impact on nursing students. The 2011-2012 survey, which
included responses from over 1,600 students, stated that the Title VIII
programs played a critical role in funding their nursing education. The
survey showed that 68 percent of the students receiving Title VIII
funding are attending school full time. By supporting full-time
students, the Title VIII programs are helping to ensure that new nurses
enter the workforce without delay. The programs also address the
current demand for primary care providers. Over one-half of respondents
reported that their career goal is to become a nurse practitioner.
Approximately 80 percent of nurse practitioners provide primary care
services throughout the United States. Additionally, several
respondents identified working in rural and underserved areas as future
goals, with becoming a nurse faculty member, a nurse practitioner, or a
nurse researcher as the top three nursing positions for their career
aspirations.
The Title VIII programs also address the need for more nurse
faculty. Data from AACN's 2011-2012 enrollment and graduations survey
show that nursing schools were forced to turn away 75,587 qualified
applications from entry-level baccalaureate and graduate nursing
programs in 2011, citing faculty vacancy as a primary reason. The Title
VIII Nurse Faculty Loan Program aids in increasing nursing school
enrollment capacity by supporting students pursuing graduate education
provided they serve as faculty for 4 years after graduation.
The Nursing Community respectfully requests $251 million for the
Nursing Workforce Development programs authorized under Title VIII of
the Public Health Service Act in fiscal year 2013.
National Institute of Nursing Research: Foundation for Evidence-Based
Care
As 1 of the 27 Institutes and Centers at the National Institutes of
Health (NIH), the NINR funds research that lays the groundwork for
evidence-based nursing practice. Nurse-scientists funded by NINR
examine ways to improve care models to deliver safe, high-quality, and
cost-effective health services to the Nation. Our country must look
toward the prevention aspect of healthcare as the vehicle for saving
our system from further financial burden, and the work of NINR embraces
this endeavor through research related to care management of patients
during illness and recovery, reduction of risks for disease and
disability, promotion of healthy lifestyles, enhancement of quality of
life for those with chronic illness, and care for individuals at the
end of life. Moreover, NINR helps to provide needed faculty to support
the education of future generations of nurses. Training programs at
NINR develop future nurse-researchers, many of whom also serve as
faculty in our Nation's nursing school.
The Nursing Community respectfully requests $150 million for the
NINR in fiscal year 2013. This level of funding is on par with the Ad
Hoc Group for Medical Research's $32 billion request for the total NIH
budget in fiscal year 2013.
Nurse-Managed Health Clinics: Expanding Access to Care
NMHCs are healthcare delivery sites managed by APRNs and are
staffed by an interdisciplinary team that may include physicians,
social workers, public health nurses, and therapists. These clinics are
often associated with a school, college, university, department of
nursing, federally qualified health center, or independent nonprofit
healthcare agency. NMHCs serve as critical access points to keep
patients out of the emergency room, saving the healthcare system
millions of dollars annually.
NMHCs provide care to patients in medically underserved regions of
the country, including rural communities, Native American reservations,
senior citizen centers, elementary schools, and urban housing
developments. The populations within these communities are the most
vulnerable to chronic illnesses that create heavy financial burden on
patients and the healthcare system. NMHCs aim to reduce the prevalence
of disease and create healthier communities by providing primary care
services and educating patients on health promotion practices.
Furthermore, NMHCs serve as clinical education training sites for
nursing students and other health professionals, a crucial aspect of
NMHCs given that a lack of training sites is commonly identified as a
barrier to nursing school enrollment.
The Nursing Community respectfully requests $20 million for the
Nurse-Managed Health Clinics authorized under Title III of the Public
Health Service Act in fiscal year 2013.
Without a workforce of well-educated nurses providing evidence-
based care to those who need it most, including our growing aging
population, the healthcare system is not sustainable. The Nursing
Community's request of $251 million for the Title VIII Nursing
Workforce Development programs, $150 million for the National Institute
of Nursing Research, and $20 million for Nurse-Managed Health Clinics
in fiscal year 2013 will help ensure access to quality care provided by
America's nursing workforce.
members of the nursing community submitting this testimony
Academy of Medical-Surgical Nurses
American Academy of Nurse Practitioners
American Academy of Nursing
American Association of Colleges of Nursing
American Association of Nurse Anesthetists
American Association of Nurse Assessment Coordination
American College of Nurse Practitioners
American College of Nurse-Midwives
American Nephrology Nurses' Association
American Nurses Association
American Organization of Nurse Executives
American Psychiatric Nurses Association
American Society for Pain Management Nursing
American Society of PeriAnesthesia Nurses
Asian American and Pacific Islander Nurses Association
Association of Community Health Nursing Educators
Association of Nurses in AIDS Care
Association of periOperative Registered Nurses
Association of Rehabilitation Nurses
Association of State and Territorial Directors of Nursing
Association of Women's Health, Obstetric and Neonatal Nurses
Commissioned Officers Association of the U.S. Public Health Service
Dermatology Nurses' Association
Gerontological Advanced Practice Nurses Association
Hospice and Palliative Nurses Association
Infusion Nurses Society
International Association of Forensic Nurses
International Nurses Society on Addictions
International Society of Nurses in Genetics
International Society of Psychiatric Nursing
National American Arab Nurses Association
National Association of Clinical Nurse Specialists
National Association of Nurse Practitioners in Women's Health
National Association of Pediatric Nurse Practitioners
National Black Nurses Association
National Gerontological Nursing Association
National Nursing Centers Consortium
National Organization for Associate Degree Nurses
National Organization of Nurse Practitioner Faculties
Nurses Organization of Veterans Affairs
Oncology Nursing Society
Pediatric Endocrinology Nursing Society
Preventive Cardiovascular Nurses Association
Public Health Nursing Section, American Public Health Association
Society of Urologic Nurses and Associates
Wound, Ostomy and Continence Nurses Society
______

Prepared Statement of the National Congress of American Indians
department of health and human services
Introduction
The National Congress of American Indians (NCAI) is the oldest and
largest American Indian organization in the United States. In 1944,
tribal leaders created NCAI as a response to termination and
assimilation policies that threatened the existence of American Indian
and Alaska Native tribes. Since then, NCAI has fought to preserve the
treaty rights and sovereign status of tribal governments, while
ensuring that Indian people may fully participate in the political
system. As the most representative organization of American Indian
tribes, NCAI serves the broad interests of tribal governments across
the Nation.
Tribal nations in the United States are vastly diverse--as are the
citizens that comprise them--but in the modern era, the common element
responsible for revitalizing tribal homelands is tribal sovereignty at
work. Effective self-rule requires that the United States respect
tribes' inherent rights of self-government and self-determination and
that the Federal Government honor its trust obligations to Native
peoples in the Federal budget. Addressing the healthcare needs of
American Indians and Alaska Natives is one of the most important
cornerstones of this Federal trust responsibility. The budget for the
Department of Health and Human Services should carry forward the trust
responsibility and support tribal self-determination as a key element
of healthcare reform while continuing the Government's partnership with
tribes to improve Indian health.
The foregoing fiscal year 2013 tribal budget program requests have
been compiled in collaboration with tribal leaders, Native
organizations, and tribal budget consultation bodies. Tribes
respectfully request that these recommendations be included in the
Labor, Health and Human Services, Education, and related agencies
appropriations process.
Administration on Aging
Older Americans Act--Title VI
Provide $30 million for Parts A (Grants for Native Americans) and B
(Grants for Native Hawaiians) of the Act.
Provide $8.3 million for the Native American Caregiver Support
Program, and create a line item for training for tribal recipients.
Programs under Title VI of the Older Americans Act are the primary
vehicle for providing nutrition and other direct supportive services to
American Indian, Alaska Native, and Native Hawaiian elders and their
caregivers. However, these programs cannot be effective if not
adequately funded.
Older Americans Act--Title VII
Create a tribal set-aside of $2 million under Subtitle B of Title
VII.
Subtitle B of Title VII of the Older Americans Act authorizes a
program for tribes, public agencies, or nonprofit organizations serving
Native elders to assist in prioritizing issues concerning elder rights
and to carry out related activities. A $2 million tribal set-aside
should be created under Subtitle B to ensure that tribes have access to
funds at a comparable level to States.
Older Americans Act--Title IV
Provide $3 million for national minority aging organizations to
build the capacity of community-based organizations to better serve
American Indian and Alaska Native seniors.
Language and cultural barriers severely restrict Native elder
access to Federal programs for which they are eligible, such as Social
Security, Medicare, and Medicaid. Funding is needed to build capacity
for tribal, minority, and other community-based aging organizations to
serve Native elders and enroll them in programs to which they are
entitled.
Administration for Children and Families
Head Start
Exempt Head Start from budget-related reductions.
The Indian Head Start program comprehensively integrates education,
health, and family services in a manner that closely mirrors a
traditional Indian education model, making Indian Head Start one of the
most successful Federal programs operating in Indian Country. Despite
these successes, inflation-adjusted Head Start funding has
significantly declined in the past decade and as a result, less than 20
percent of age-eligible Indian children are enrolled in Indian Head
Start. Recognizing that achieving a significant funding increase in
fiscal year 2013 will be difficult, Head Start should at least be held
harmless from any reductions, just as other low-income programs are
held harmless in the Budget Control Act of 2011.
Language Preservation Programs
Provide $12 million for Native language preservation, with $4
million designated to fund the Esther Martinez Language Programs
through the Administration for Native Americans.
Nationwide, tribes are combating the loss of traditional languages
through culture and language programs. Tribal students in immersion
programs often perform substantially better academically than Native
students who have not participated in such programs.\1\ As such, in
2013, the Federal budget should include $12 million as part of the
appropriation to the Administration for Native Americans for Native
language preservation activities, with $4 million designated to support
Esther Martinez Language Programs' Native language immersion
initiatives.
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\1\ See for example the cases profiled in Pease-Pretty on Top, J.
(2003). Native American Language Immersion: Innovative Native Education
for Children & Families. Denver, Colorado: American Indian College
Fund.
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Foster Care Initiative
Provide $20 million to fund Children's Bureau foster care
demonstration grants and track tribal awards.
The goal of this Obama administration initiative is to identify
innovative strategies that improve outcomes for children in long-term
foster care. Twenty million dollars in demonstration grants should be
provided to tribes, States, and localities to test new, innovative
strategies for improving outcomes for foster care children.
Child Welfare Services
Increase the tribal allocation of Title IV-B, Subpart 1 by creating
a 3 percent set-aside of the total appropriation.
Provide $200 million for Title IV-B, Subpart 2--the full amount
authorized for the discretionary component of the program that will
benefit tribes and States.
The bare minimum needed to establish a child abuse and neglect
prevention program in any tribal community is approximately $80,000.
Title IV-B, Subpart 1 supports a significant portion of this amount,
yet tribes are hindered in their ability to effectively administer a
program as the majority of them are only eligible for small grants
(less than $10,000, in most cases). No other consistent, stable source
of funding is available to tribal governments to provide basic,
preventive child welfare services. A 3 percent tribal set-aside of
Title IV-B, Subpart 1 funding (within a total appropriation of $281.7
million for this capped entitlement program) will allow for larger
tribal grants to provide basic child welfare services to support Native
families and protect Native children.
In order for tribal courts to advance new practices and improve
outcomes with children under their jurisdiction, they need access to
funding that will support capacity building and innovative practices.
Currently, the Title IV-B, Subpart 1 program allows the use of funds
for family preservation purposes, but Title IV-B, Subpart 2 (the larger
of the two programs) does not focus on family preservation. Title IV-B,
Subpart 2 should be funded at $200 million--the full amount authorized
under the Act for the discretionary component of the program--so tribes
will receive increased resources from the 3 percent set-aside.
Child Abuse Prevention and Treatment Act (CAPTA)
Provide a separate line item for tribal Title II grants and set-
aside 3 percent of total funding for tribes and tribal consortia.
Currently, tribes and migrant programs must compete with each other
for a 1 percent set-aside of the total funding appropriated under Title
II of CAPTA. Tribes and States have a governmental responsibility to
ensure that foster care protections are provided to every child that is
in an out-of-home placement under their jurisdiction and care. A 3
percent tribal set-aside, listed as a separate line item in the budget,
will provide a base level of funding for every tribe, regardless of
size, and give every tribal community an opportunity to establish a
quality child abuse and neglect prevention program.
Low-Income Home Energy Assistance Program (LIHEAP)
Maintain full funding levels for LIHEAP ($4.5 billion), with $51
million to tribes.
LIHEAP prevents families from having to make the choice between
food and heat. With high unemployment and barriers to economic
development, much of Indian Country cannot afford to pay for the rising
costs of heat and power. Full funding of LIHEAP is crucial to address
the extreme need for heating assistance in Indian Country.
Substance Abuse and Mental Health Services Administration
Behavioral Health
Provide $40 million to fund the Behavioral Health--Tribal
Prevention Grant (BH-TPG).
This proposed SAMHSA grant program has been authorized to award
grants to tribes to evidence-based prevention practices in tribal
communities. Funded through the prevention fund (authorized by the
Affordable Care Act), the BH-TPG will be used to implement
comprehensive prevention strategies to address the most serious mental
health and substance abuse issues in tribal communities.
Suicide Prevention
Provide a $6 million tribal set-aside for American Indian and
Alaska Native suicide prevention programs under the Garrett Lee Smith
Act.
Suicide has reached epidemic proportions in some tribal
communities. The Garrett Lee Smith Memorial Act of 2004 is the first
Federal law to provide specific funding for youth suicide prevention
programs, authorizing $82 million in grants over 3 years through
SAMHSA. Currently, tribes must compete with other institutions to
access these funds. To assist tribal communities in accessing these
funds, a line-item for tribal-specific resources is necessary.
department of labor
Tribal nations in the United States are vastly diverse--as are the
citizens that comprise them--but in the modern era, the common element
responsible for revitalizing tribal homelands is tribal sovereignty at
work. Effective self-rule requires that the United States respect
tribes' inherent rights of self-government and self-determination and
that the Federal Government honor its trust obligations to Native
peoples in the Federal budget. Investing in the education of American
Indian and Alaska Native students is not only one most of the most
important cornerstones of this Federal trust responsibility, but is
also critical to economic revitalization for both Indian Country and
the Nation as a whole.
Research repeatedly demonstrates that investments in education
contribute to economic growth while also expanding opportunities for
individual advancement. Unfortunately, when faced with tough budgetary
decisions, policymakers and elected officials often target education
and other social welfare budgets that require more long-term
investments. Even worse, Native youth and families are often the
hardest hit by these cuts. As a result, schools in Indian Country face
inadequate Federal support, which leads to a shortage of staff, lack of
support services, dilapidated facilities, and, ultimately, lower
student achievement and limited educational opportunities. The Federal
Government must live up to its commitment to providing a quality
education for American Indian and Alaska Native students and for all of
the Nation's students.
The foregoing fiscal year 2013 tribal budget program requests have
been compiled in collaboration with tribal leaders, Native
organizations, and tribal budget consultation bodies. Tribes
respectfully request that these recommendations be included in the
Labor, Health and Human Services, Education, and related agencies
appropriations process.
department of education
Culturally Based Education
Provide $198.4 million for Title VII funding under the Elementary
and Secondary Education Act.
Title VII of the Elementary and Secondary Education Act, which
provides essential support for culturally based education approaches
for American Indian and Alaska Native students and addresses the unique
educational and cultural needs of Native students, is severely
underfunded. It is well-documented that Native students are more likely
to thrive in environments that support their cultural identities.\2\
Title VII has produced many success stories, but increased funding is
needed in this area to close the achievement gap for Native students
and to ensure continued support for Native cultures and language
education.
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\2\ Demmert, W.G. & Towner, J.C. (2003). A Review of the Research
Literature on the Influences of Culturally Based Education on the
Academic Performance of Native American Students. Portland, Oregon:
Northwest Regional Educational Laboratory.
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Impact Aid Funding
Provide $1.395 billion for Impact Aid, Title VIII funding under the
Elementary and Secondary Education Act.
Impact Aid provides resources to public schools whose tax bases are
reduced because of Federal activities, including the presence of an
Indian reservation. Thousands of American Indian and Alaska Native
youth are served by reservation and other schools eligible for Impact
Aid, including those located on or near tribal lands and those living
on military bases.\3\ Yet, Impact Aid funding has not kept pace with
inflation. Past budgets have also failed to provide appropriate
allocations for facilities construction, causing a tremendous backlog
in new construction and leaving many public schools on reservations in
desperate need of repair.
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\3\ DeVoe, J. & Darling-Churchill, K. (2008). Status and Trends in
the Education of American Indians and Alaska Natives. Washington, DC:
U.S. Department of Education, National Center for Education Statistics
(Publication Number NCES 2008-084).
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Tribal Education Departments
Provide $5 million to fund Tribal Education Departments (TEDs).
Five million dollars should be appropriated to the Department of
Education to support Tribal Education Departments (TEDs). The
Elementary and Secondary Education Act of 2001 authorizes this
appropriation. Congress provided the first appropriation of $2 million
in the Department of Education's Indian Education National Activities
line for TEDs in the fiscal year 2012 Consolidated Appropriations Act.
With continued funding, the impact on Indian education would be
significant.
Currently, most tribes fund TEDs with non-Federal sources of
funding, Federal funding from Johnson O'Malley, and sometimes limited
Title VII Indian education formula grants from the Elementary and
Secondary Education Act. TEDs have a wide range of budgets depending
upon the tribe's overall budget and priorities. TEDs serve thousands of
American Indian and Alaska Native students nationwide in Bureau of
Indian Education, tribal, and public schools. TEDs must have adequate
financial support so they can serve the educational needs of these
students at a comparable level to the students served by State
education departments and agencies.
Tribal Colleges and Universities
Provide $36 million for Title III-A grants under the Higher
Education Act.
Titles III and V of the Higher Education Act, known as Aid for
Institutional Development programs, support institutions with a large
proportion of financially disadvantaged students and low cost-per-
student expenditures. Tribal Colleges and Universities (TCUs) clearly
fit this definition. The Nation's 36 TCUs serve Native and non-Native
students in some of the most impoverished areas in the Nation, yet they
are the country's most poorly funded postsecondary institutions.
Congress recognized the TCUs as emergent institutions, and as such,
authorized a separate section of Title III (Part A, Sec. 316)
specifically to address their needs. Additionally, a separate section
(Sec. 317) was created to address similar needs of Alaska Native and
Native Hawaiian institutions. Section 316 is divided into two
competitive grants programs: formula-funded basic development grants
and competitive single-year facilities construction grants. Thirty-six
million dollars should be provided in fiscal year 2013 to fund these
two competitive grant programs.
Vocational Rehabilitation Services Projects for American
Indians with Disabilities
Increase Vocational Rehabilitation Services Projects to $67 million
and create a line item of $5 million for providing outreach to tribal
recipients.
According to the U.S. census, 24 percent of American Indians and
Alaska Natives have a disability. High rates of diabetes, heart
disease, and preventable accidents are among the issues that contribute
to this troubling reality. This creates an extraordinary need for
tribes to support their disabled citizens in becoming self-sufficient.
Further, tribes have had limited access to funding for vocational
rehabilitation and job training--such as funds made available under the
American Recovery and Reinvestment Act (ARRA)--compared to States. An
increase to $67 million would begin to put tribes on par with State
governments.
department of labor
YouthBuild
Restore the rural and tribal set-aside in the YouthBuild program
and create a dedicated 5 percent tribal set aside of at least $4
million.
The YouthBuild program assists disadvantaged, low-income youth ages
16-24 in obtaining education and work skills to be competitive
candidates in the job market. When the program was transferred to
Department of Labor in September 2006, the 10 percent set-aside for
rural and tribal programs was eliminated. Given significant
unemployment challenges and the growing Native youth population, it is
essential that the 10 percent tribal and rural set-aside be restored,
including a dedicated set-aside of 5 percent. Based on fiscal year 2011
and fiscal year 2012 appropriations, we request a set-aside of at least
5 percent ($4 million) for tribal programs.
conclusion
Thank you for your consideration of this testimony. For more
information, please contact Ahniwake Rose, NCAI Director of Human
Service Policy, at [email protected] and Amber Ebarb, NCAI Legislative
Associate, at [email protected].
______

Prepared Statement of the National Council for Diversity in the Health
Professions
Mr. Chairman and members of the subcommittee, thank you for the
opportunity to present my views before you today. I am Dr. Wanda
Lipscomb, President of the National Council for Diversity in the Health
Professions (NCDHP) and the Director of the Center of Excellence for
Culture Diversity in Medical Education at Michigan State University.
NCDHP, established in 2006, is a consortium of our Nation's majority
and minority institutions that once house the Health Resources and
Services (HRSA) Minority Centers of Excellence (COE) and Health Careers
Opportunities Programs (HCOP) when there was more funding. These
institutions are committed to diversity in the health professions. In
my professional life, I have seen firsthand the importance of health
professions institutions promoting diversity and the Title VII Health
Professions Training programs.
Mr. Chairman, time and time again, you have encouraged your
colleagues and the rest of us to take a look at our Nation and evaluate
our needs over the next 10 years. I want to say that minority health
professional institutions and the Title VII Health Professionals
Training programs address a critical national need. Persistent and
severe staffing shortages exist in a number of the health professions,
and chronic shortages exist for all of the health professions in our
Nation's most medically underserved communities. Furthermore, our
Nation's health professions workforce does not accurately reflect the
racial composition of our population. For example while blacks
represent approximately 15 percent of the U.S. population, only 2-3
percent of the Nation's health professions workforce is black. Mr.
Chairman, I would like to share with you how your committee can help
NCDHP continue our efforts to help provide quality health professionals
and close our Nation's health disparity gap.
There is a well established link between health disparities and a
lack of access to competent healthcare in medically underserved areas.
As a result, it is imperative that the Federal Government continue its
commitment to minority health profession institutions and minority
health professional training programs to continue to produce healthcare
professionals committed to addressing this unmet need.
An October 2006 study by the Health Resources and Services
Administration (HRSA), entitled ``The Rationale for Diversity in the
Health Professions: A Review of the Evidence'' found that minority
health professionals serve minority and other medically underserved
populations at higher rates than non-minority professionals. The report
also showed that; minority populations tend to receive better care from
practitioners who represent their own race or ethnicity, and non-
English speaking patients experience better care, greater
comprehension, and greater likelihood of keeping follow-up appointments
when they see a practitioner who speaks their language. Studies have
also demonstrated that when minorities are trained in minority health
profession institutions, they are significantly more likely to: (1)
serve in rural and urban medically underserved areas, (2) provide care
for minorities and (3) treat low-income patients.
As you are aware, Title VII Health Professions Training programs
are focused on improving the quality, geographic distribution and
diversity of the healthcare workforce in order to continue eliminating
disparities in our Nation's healthcare system. These programs provide
training for students to practice in underserved areas, cultivate
interactions with faculty role models who serve in underserved areas,
and provide placement and recruitment services to encourage students to
work in these areas. Health professionals who spend part of their
training providing care for the underserved are up to 10 times more
likely to practice in underserved areas after graduation or program
completion.
Institutions that cultivate minority health professionals, like the
NCDHP members, have been particularly hard-hit as a result of the cuts
to the Title VII Health Profession Training programs in fiscal year
2006, fiscal year 2007, and fiscal year 2008. Given their historic
mission to provide academic opportunities for minority and financially
disadvantaged students, and healthcare to minority and financially
disadvantaged patients, minority health professions institutions
operate on narrow margins. The cuts to the Title VII Health Professions
Training programs amount to a loss of core funding at these
institutions and have been financially devastating. We have been
pleased to see efforts to revitalize both COE and HCOP in recent fiscal
years, but it is important to fully fund the programs at least at the
fiscal year 2004 level so that more diversity is achieved in our health
professions.
Earlier this year with the passage of health reform, the Congress
showed the importance of the many of the Title VII programs, including
the Minority Centers of Excellence (COE) and Health Careers
Opportunities Program (HCOP), by reauthorizing the programs.
Minority Centers of Excellence.--COEs focus on improving student
recruitment and performance, improving curricula in cultural
competence, facilitating research on minority health issues and
training students to provide health services to minority individuals.
COEs were first established in recognition of the contribution made by
four historically black health professions institutions (the Medical
and Dental Institutions at Meharry Medical College; The College of
Pharmacy at Xavier University; and the School of Veterinary Medicine at
Tuskegee University) to the training of minorities in the health
professions. Congress later went on to authorize the establishment of
``Hispanic'', ``Native American'' and ``Other'' Historically black
COEs. For fiscal year 2013, I recommend a funding level of $24 million
for COEs.
Health Careers Opportunity Program (HCOP).--HCOPs provide grants
for minority and non-minority health profession institutions to support
pipeline, preparatory and recruiting activities that encourage minority
and economically disadvantaged students to pursue careers in the health
professions. Many HCOPs partner with colleges, high schools, and even
elementary schools in order to identify and nurture promising students
who demonstrate that they have the talent and potential to become a
health professional.
Collectively, the absence of HCOPs will substantially erode the
number of minority students who enter the health professions. Over the
last three decades, HCOPs have trained approximately 30,000 health
professionals including 20,000 doctors, 5,000 dentists and 3,000 public
health workers. For fiscal year 2013, I recommend a funding level of
$23 million for HCOPs.
Mr. Chairman, please allow me to express my appreciation to you and
the members of this subcommittee. With your continued help and support,
NCDHP member institutions and the Title VII Health Professions Training
programs can help this country to overcome health and healthcare
disparities. Congress must be careful not to eliminate, paralyze or
stifle the institutions and programs that have been proven to work.
NCDHP seeks to close the ever widening health disparity gap. If this
subcommittee will give us the tools, we will continue to work towards
the goal of eliminating that disparity everyday.
Thank you, Mr. Chairman, and I welcome every opportunity to answer
questions for your records.
______

Prepared Statement of the National Consumer Law Center
The Federal Low Income Home Energy Assistance Program (LIHEAP) \1\
is the cornerstone of Government efforts to help needy seniors and
families stay warm and avoid hypothermia in the winter, as well as stay
cool and avoid heat stress (even death) in the summer. LIHEAP is an
important safety net program for low-income, unemployed and
underemployed families struggling in this economy. The demand for
LIHEAP assistance remains at record high levels. In fiscal year 2011,
the program helped an estimated 9 million low-income households afford
their energy bills.
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\1\ 42 U.S.C. Sec. Sec. 8621 et seq.
---------------------------------------------------------------------------
One of the fastest growing segments of LIHEAP recipients is
veterans. The number of LIHEAP recipient households with a veteran
increased from 12 percent of all households served in fiscal year 2008
to 20 percent of all LIHEAP households in fiscal year 2011.\2\
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\2\ LIHEAP Recipients by Veteran Status, NEADA (Dec. 8, 2011).
Available at www.neada.org.
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Unemployment and poverty forecasts for 2013 indicate that the
number of struggling households will remain at record high levels. In
light of the crucial safety net function of this program in protecting
the health and well-being of low-income seniors, the disabled, and
families with very young children, we respectfully request that LIHEAP
be fully funded at its authorized level of $5.1 billion for fiscal year
2013.
LIHEAP Provides Critical Help With Home Energy Bills for The Large
Number of Low-Income Households Struggling to Move Forward in
These Difficult Economic Times
Funding LIHEAP at $5.1 billion for the regular program in fiscal
year 2013 is essential in light of the sharp increase in poverty and
unemployment. It is telling that even with unusually warm winter
temperatures, the size of home heating bills still remains beyond the
ability to pay for struggling households.\3\ Ohio was hard hit by the
great recession, losing 430,500 jobs.\4\ In that State, the total
number of disconnections for gas and electric service for the year
ending December 31, 2011 was 454,445. While the number of
disconnections in 2011 represents a modest increase over 2010
disconnections, this growth is cause for concern. Ohio strengthened its
Percentage of Income Payment Program (PIPP) and other payment plans
designed to help struggling low-income households afford their energy
bills,\5\ yet the State faced a 30 percent reduction in LIHEAP funding
from fiscal year 2011. LIHEAP assistance is critical for helping these
struggling families afford their heating bills.
---------------------------------------------------------------------------
\3\ See e.g., Steve Gravelle, Thousands of Iowans Facing Utility
Shutoff Despite Mild Winter, The Gazette, Mar. 22, 2012. Available at
http://thegazette.com/2012/03/22/thousands-of-iowans-facing-utility-
shutoff-despite-mild-winter/.
\4\ The State of Poverty in Ohio: A Path to Recovery, Ohio
Association of Community Action Agencies (May 2011) at p. iv.
\5\ Office of the Ohio Consumers' Counsel.
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Despite milder winter temperatures this winter and lower natural
gas bills in Iowa, a record number of low-income households have fallen
behind on their energy bills. In February 2012, the number of low-
income households with past due energy accounts was the second highest
on record for this time of year since these data have been tracked. The
Iowa LIHEAP program estimates that demand for assistance will remain
strong and that it will be serving close to last year's number of
applicants, about 95,000 households. However, the size of the energy
assistance has been cut back 25 percent due to the substantial cuts to
the LIHEAP funding in fiscal year 2012. Thus, as the data shows, the
need for LIHEAP remains strong in this sluggish economy despite the
milder temperatures and the mitigation in natural gas prices.\6\
---------------------------------------------------------------------------
\6\ Iowa Bureau of Energy Assistance.
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Data from Pennsylvania also demonstrate that an unusually mild
winter cannot make up for cuts to vital energy assistance. Pennsylvania
experienced a steady increase in enrollment for the regular LIHEAP
program from fiscal year 2008 to fiscal year 2010, with 371,000
households served in 2008, 547,000 in fiscal year 2009, and 587,000 in
fiscal year 2010. However, due to the decreased LIHEAP funds, the
projection for fiscal year 2012 is down to 425,000. Utilities in
Pennsylvania that are regulated by the Pennsylvania Public Utility
Commission (PA PUC) have established universal service programs that
assist utility customers in paying bills and reducing energy usage.
Even with these programs, electric and natural gas utility customers
find it difficult to keep pace with their energy burdens. The PA PUC
estimates that more than 20,034 households entered the current heating
season without heat-related utility service. This number includes about
2,559 households who are heating with potentially unsafe heating
sources such as kerosene or electric space heaters and kitchen ovens.
One harmful impact of unaffordable home energy is the abandonment of
property that is no longer habitable. In mid-December 2011, an
additional 13,136 residences where electric service was previously
terminated were vacant and over 5,977 residences where natural gas
service was terminated were vacant. In 2011, the number of terminations
increased 60 percent compared with terminations in 2004. As of December
2011, preliminary data shows that 19.4 percent of residential electric
customers and 15.8 percent of natural gas customers were overdue on
their energy bills.\7\
---------------------------------------------------------------------------
\7\ Pennsylvania Public Utilities Commission.
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Unfortunately, the number of households around the country that are
struggling to make ends meet remains very high due to the slow recovery
from the great recession. According a Pew Fiscal Analysis Initiative
report, as of December 2011, 4 million jobless workers (which is more
than the population of Oregon) have been unemployed for a year or
longer.\8\ While long-term unemployment has affected all age groups,
older workers have been hit particularly hard by this downturn.\9\
CBO's budget and economic outlook report projects that unemployment
will average 9.1 percent in 2013,\10\ far from the 5.3 percent that CBO
estimates is the natural rate of unemployment.\11\ The U.S. Census
reports the largest number in poverty in 52 years, 46.2 million people
in 2010.\12\
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\8\ Pew Economic Policy Group Fiscal Analysis Initiative, Five
Long-Term Unemployment Questions, February 1, 2012 at Question 1.
\9\ Id at Question 3. (``However, among people without jobs,
unemployed older workers were the most likely to have been jobless for
a year or more. For example, in the fourth quarter of 2011, more than
42 percent of unemployed workers older than 55 had been out of work for
at least a year, a higher percentage than any other age category.'')
\10\ CBO, The Budget and Economic Outlook: Fiscal Years 2012 to
2022, Chpt. 2 The Economic Outlook Table 2-1. CBO's Economic
Projections for Calendar Years 2012 to 2022 (Jan. 2012) at p.27.
\11\ CBO, The Budget and Economic Outlook: Fiscal Years 2011 to
2021, Summary (Jan. 2011) at Summary Table 2.
\12\ U.S. Census, Income, Poverty, and Health Insurance Coverage in
the United States: 2010 (Sept. 2011) at p.14.
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Thus indications are that the demand for LIHEAP in fiscal year 2013
will remain very strong as this program helps struggling households in
a number of ways. LIHEAP protects the health and safety of the frail
elderly, the very young and those with chronic health conditions, such
as diabetes, that increase susceptibility to temperature extremes.
LIHEAP assistance also helps keep families together by keeping homes
habitable during the bitter cold winter and sweltering summers.
LIHEAP Is a Critical Safety Net Program for the Elderly, the Disabled
and Households With Young Children
Dire Choices and Dire Consequences.--Recent national studies have
documented the dire choices low-income households face when energy
bills are unaffordable. Because adequate heating and cooling are tied
to the habitability of the home, low-income families will go to great
lengths to pay their energy bills. Low-income households faced with
unaffordable energy bills cut back on necessities such as food,
medicine and medical care.\13\ The U.S. Department of Agriculture has
released a study that shows that low-income households, especially
those with elderly persons, experience very low food security during
heating and cooling seasons when energy bills are high.\14\ A pediatric
study in Boston documented an increase in the number of extremely low
weight children, age 6 to 24 months, in the 3 months following the
coldest months, when compared to the rest of the year.\15\ Clearly,
families are going without food during the winter to pay their heating
bills, and their children fail to thrive and grow. A 2007 Colorado
study found that the second leading cause of homelessness for families
with children is the inability to pay for home energy.\16\
---------------------------------------------------------------------------
\13\ See e.g., National Energy Assistance Directors' Association,
2011 National Energy Assistance Survey (Nov. 2011) (to pay their energy
bills, 24 percent of LIHEAP recipients went without food, 37 percent
went without medical or dental care, 34 percent did not fill or took
less than the full dose of a prescribed medicine). Available at http://
www.neada.org/news/nov012011.html.
\14\ Mark Nord and Linda S. Kantor, Seasonal Variation in Food
Insecurity Is Associated with Heating and Cooling Costs Among Low-
Income Elderly Americans, The Journal of Nutrition, 136 (Nov. 2006)
2939-2944.
\15\ Deborah A. Frank, MD et al., Heat or Eat: The Low Income Home
Energy Assistance Program and Nutritional and Health Risks Among
Children Less Than 3 years of Age, AAP Pediatrics v.118, no.5 (Nov.
2006) e1293-e1302. See also, Child Health Impact Working Group,
Unhealthy Consequences: Energy Costs and Child Health: A Child Health
Impact Assessment Of Energy Costs And The Low Income Home Energy
Assistance Program (Boston: Nov. 2006) and the Testimony of Dr. Frank
Before the Senate Committee on Health, Education, Labor and Pensions
Subcommittee on Children and Families (March 5, 2008).
\16\ Colorado Interagency Council on Homelessness, Colorado
Statewide Homeless Count Summer, 2006, research conducted by University
of Colorado at Denver and Health Sciences Center (Feb. 2007).
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When people are unable to afford paying their home energy bills,
dangerous and even fatal results occur. In the winter, families resort
to using unsafe heating sources, such as space heaters, ovens and
burners, all of which are fire hazards. Space heaters pose 3 to 4 times
more risk for fire and 18 to 25 times more risk for death than central
heating. In 2007, space heaters accounted for 17 percent of home fires
and 20 percent of home fire deaths.\17\ In the summer, the inability to
keep the home cool can be lethal, especially to seniors. According to
the CDC, older adults, young children and persons with chronic medical
conditions are particularly susceptible to heat-related illness and are
at a high risk of heat-related death. The CDC reports that 3,442 deaths
resulted from exposure to extreme heat during 1999-2003.\18\ The CDC
also notes that air-conditioning is the number one protective factor
against heat-related illness and death.\19\ LIHEAP assistance helps
these vulnerable seniors, young children and medically vulnerable
persons keep their homes at safe temperatures during the winter and
summer and also funds low-income weatherization work to make homes more
energy efficient.
---------------------------------------------------------------------------
\17\ John R. Hall, Jr., Home Fires Involving Heating Equipment
(Jan. 2010) at ix and 33. Also, 40 percent of home space heater fires
involve devices coded as stoves.
\18\ CDC, ``Heat-Related Deaths--United States, 1999-2003'' MMWR
Weekly, July 28, 2006.
\19\ CDC, ``Extreme Heat: A Prevention Guide to Promote Your
Personal Health and Safety'' available at http://emergency.cdc.gov/
disasters/extremeheat/heat_guide.asp.
---------------------------------------------------------------------------
LIHEAP is an administratively efficient \20\ and effective targeted
health and safety program that works to bring fuel costs within a
manageable range for vulnerable low-income seniors, the disabled and
families with young children. LIHEAP must be fully funded at its
authorized level of $5.1 billion in fiscal year 2013 in light of
unaffordable, but essential heating and cooling needs of millions of
struggling households due to the record high unemployment levels during
the slow recovery from the great recession.\21\
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\20\ States can only spend 10 percent or less of their LIHEAP grant
in administrative and planning costs. 42 U.S.C. Sec. 8624(b)(9).
\21\ ``A large portion of the economic and human costs of the
recession and slow recovery remain ahead . . . Those costs fall
disproportionately on people who lose their jobs, who are displaced
from their homes, or who own businesses that fail.'' CBO, The Budget
and Economic Outlook: Fiscal Years 2012 to 2022, Chpt. 2 The Economic
Outlook at p.26.
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______

Prepared Statement of the National Council of Social Security
Management Associations
On behalf of the National Council of Social Security Management
Associations (NCSSMA), thank you for the opportunity to submit our
written testimony on the fiscal year 2013 funding for the Social
Security Administration (SSA). We respectfully request your support of
full funding of the President's fiscal year 2013 budget request on
behalf of SSA and the American public we serve.
NCSSMA is a membership organization of over 3,500 SSA managers and
supervisors who provide leadership in nearly 1,300 community-based
Field Offices and Teleservice Centers throughout the country. We are
the front-line service providers for SSA in communities throughout the
Nation. We are also the Federal employees who work with many of your
staff members to resolve problems and issues for constituents who
receive Social Security benefits. For over 42 years, NCSSMA has
considered a strong and stable Social Security Administration that
delivers quality and prompt locally delivered service to the American
public a top priority. We also consider it a top priority to be good
stewards of the taxpayers' monies.
SSA is cost-efficient and appropriations to the agency are an
excellent investment and return on taxpayer dollars. We are very
appreciative of the support for SSA that the Subcommittee has provided
in recent years. The additional funding SSA received in fiscal years
2008-2010 helped significantly to prevent workloads from spiraling out
of control and assisted with improving service to the American public.
However, budgetary constraints in fiscal years 2011-2012 have resulted
in vital service reductions and many public service repercussions.
NCSSMA strongly supports the President's fiscal year 2013 budget
request for SSA, which includes $11.760 billion for the agency's
administrative expenses through the Limitation on Administrative
Expenses (LAE) account. We respectfully request the Subcommittee
provides no less than the President's full SSA budget request in fiscal
year 2013. Full funding for SSA is critical to maintain staffing in
front-line components, cover inflationary increases, continue efforts
to reduce hearings and disability backlogs, and increase deficit-
reducing program integrity work.
Current State of SSA Operations
NCSSMA has significant concerns about the dramatic growth in SSA
workloads. We strongly believe that SSA must receive adequate funding
to maintain service levels vital to 60 million Americans. Despite
agency strategic planning, expansion of online services, significant
productivity gains, and the best efforts of management and employees,
SSA is still faced with many challenges to providing the service that
the American public has earned and deserves.
Over the last 8 years, SSA has experienced a dramatic increase in
Retirement, Survivor, Dependent, Disability, and Supplementary Security
Income (SSI) claims. The additional claims receipts are driven by the
ongoing wave of the nearly 80 million baby boomers who will be filing
for Social Security benefits by 2030--an average of 10,000 per day! By
fiscal year 2013, retirement and survivor claims will have increased by
over 30 percent and disability claims will have increased by nearly 25
percent since fiscal year 2007.
The need for resources in SSA Field Offices is critical to process
these additional claims and provide other vital services to the
American public. Field Offices are responsible for processing 2.6
million SSI redeterminations in fiscal year 2012, an increase of more
than 100 percent from fiscal year 2008. Nationally, visitors to Field
Offices increased from 41.9 million in fiscal year 2007 to 44.9 million
in fiscal year 2011. SSA continues to experience unprecedented
telephone call volumes. In fiscal year 2011, SSA completed 62 million
transactions over the 800 Number network. NCSSMA estimates Field Office
telephone contacts to be more than 32 million during the same time
period. The result is a combined total of over 92 million telephone
contacts annually for SSA.
SSA Funding for Fiscal Year 2012
NCSSMA strongly supported the President's fiscal year 2012 budget
request of $12.522 billion for SSA's administrative expenses. Much of
this increase was needed to cover inflationary costs for fixed
expenses. Funding at this level would have ensured that SSA could meet
its public service obligations. Despite SSA's enormous challenges, with
the Federal deficit concerns, attaining this level of funding was not
possible. SSA's fiscal year 2012 appropriation for administrative
funding through the LAE account was $11.446 billion, only $22 million
above the fiscal year 2011 enacted level.
Inadequate funding of SSA in fiscal year 2013 would have major
repercussions for SSA, including a continued hiring freeze, reduction
of overtime, and postponement of initiatives to improve efficiency.
Reducing resources at the same time SSA workloads are dramatically
increasing is a prescription for significant service deterioration and
workload backlogs. In addition, inadequate fiscal year 2013 funding
levels will have a collateral negative impact on fiscal year 2014.
Field Office Service Delivery Challenges
SSA Field Offices are experiencing tremendous stress because of
ever-increasing workloads and additional customer contacts. The fiscal
year 2011 and fiscal year 2012 enacted funding levels exacerbated the
situation and the impact on local Field Offices around the country is
significant.
--Frontline feedback from our busiest urban offices indicates that
some are seeing their visitor traffic explode with overflowing
reception areas and increased waiting times.
--Most of SSA has been under a hiring freeze because of the current
budget constraints. The agency expects to lose 3,000 employees
in fiscal year 2012 and 2,000 more in fiscal year 2013. This is
in addition to 4,000 lost in fiscal year 2011 resulting in a
total loss of 9,000 employees in just 3 years. SSA will have
approximately the same number of employees in fiscal year 2013
as it did in fiscal year 2007, even though workloads have
increased dramatically.
--SSA projects 45 percent of its employees, including 60 percent of
supervisors, will be eligible to retire by fiscal year 2020.
Serious concerns exist about SSA's ability to sustain service
levels with the tremendous loss of institutional knowledge from
front-line personnel.
--Geographical staffing disparities have occurred with uneven
attrition leaving some offices significantly understaffed. This
is especially problematic for rural SSA Field Offices, whose
customers often live vast distances away, may have no Internet
service, and lack access to public transportation.
SSA Online eServices Assist with Service Delivery Challenges
Expansion of services available to the American public via the
Internet has helped to alleviate the number of visitors and telephone
calls to SSA. However, Internet services are not keeping pace with the
increasing demand for service. High-volume transactions, such as
requests for Social Security cards and benefit verifications are not
yet available on the Internet, or are only being used to a limited
degree. Requests for Social Security cards and benefit verifications
represent about 35 percent of all transactions completed in SSA Field
Offices in fiscal year 2011.
NCSSMA believes that SSA must be appropriately funded in fiscal
year 2013 and beyond for continued investment in improved, user-
friendly Internet services allowing for more online transactions. If
individuals were able to successfully conduct SSA business online, the
results would include fewer contacts with Field Offices and the 800
Number network, improved efficiencies, and enhanced public service.
Disability Workload Processes
Nationwide, over 3.3 million new disability claims were processed
and sent to State Disability Determination Services in fiscal year
2011, the highest in our history. This surge of increased claims has
created backlogs. We expect that pending initial disability claims will
rise to nearly 861,000 in fiscal year 2012 and to over 1.1 million in
fiscal year 2013. SSA's largest backlogs are hearings appealing initial
disability decisions processed by the Office of Disability Adjudication
and Review. Hearing receipts continue to rise, and through March 2012,
822,757 hearings were pending, which is 117,390 more than at the end of
fiscal year 2010, and a new all-time high.
Despite these unprecedented challenges, SSA continues to make
progress. In fiscal year 2012 (through March), the average processing
time for a hearing was 350 days, the lowest average time since fiscal
year 2003. Unfortunately, the number of claims and hearings pending is
still not acceptable to Americans who need Social Security to support
their families. Budget constraints in fiscal year 2011 and fiscal year
2012 impeded progress and prevented SSA from opening eight planned
Hearing Offices. This significantly threatens to prevent SSA from
achieving its goal of eliminating the hearings backlog by fiscal year
2013.
It is important to understand that annual appropriated funding
levels for SSA have a critical impact on the hearings backlog. One of
the most significant reasons for the increase in the hearings backlog
was the significant underfunding of SSA from fiscal years 2004 through
2007.
President's Fiscal Year 2013 Budget Request for SSA
NCSSMA strongly supports the President's fiscal year 2013 budget
request for SSA and requests that Congress provide full funding to
maintain public service levels and to allow the agency to:
--Cover fixed cost increases of $300 million (rent, guards, postage,
and employee compensation).
--Replace about one out of four employees lost in our Field Offices
and Processing Centers.
--Process over 3 million disability and SSI claims along with 5
million retirement, survivor, and Medicare claims.
--Eliminate the disability hearings backlog by conducting hearings
for 960,000 cases, 75 percent more than in fiscal year 2007,
and reduce processing time for a hearing to 270 days.
--Complete additional program integrity workloads yielding billions
in savings--650,000 medical Continuing Disability Reviews
(CDRs) and 2.622 million SSI redeterminations.
SSA issues over $60 billion in monthly benefit payments to over 60
million people and the agency takes its stewardship responsibilities
seriously. The fiscal year 2013 budget request includes $1.024 billion
dedicated to program integrity. Investment in program integrity reviews
saves taxpayer dollars and is fiscally prudent in reducing the Federal
budget and deficit.
--CDRs determine whether disability benefits should be ceased because
of medical improvement. SSA medical CDRs yield $9 in lifetime
program savings for every $1 spent.
--SSI redeterminations review nonmedical factors of eligibility, such
as income and resources, to identify payment errors. SSI
redeterminations yield a return on investment of $6 in program
savings over 10 years for each $1 spent, including Medicaid
savings accruals.
NCSSMA recommends consideration of legislative proposals included
in the fiscal year 2013 budget request, which can improve the effective
administration of the Social Security program, with minimal effect on
program dollars. We believe these proposals have the potential to
reduce operational costs and increase administrative efficiency. This
includes enacting the Work Incentives Simplification Pilot (WISP),
quarterly Federal wage reporting, workers compensation automatic
reporting, and development of an automated system to report State and
local pensions.
Conclusion
NCSSMA recognizes in the current budget environment that it may be
difficult to provide adequate funding for SSA. However, Social Security
is one of the most successful Government programs in the world and
touches the lives of nearly every American family. We are a very
productive agency and a key component of the Nation's economic safety
net for the aged and disabled. A strong Social Security program equates
to a strong America and it must be maintained as such for future
generations.
NCSSMA sincerely appreciates the Subcommittee's interest in the
vital services Social Security provides, and your ongoing support to
ensure SSA has the resources necessary to serve the American public. We
respectfully request your support of full funding of the President's
fiscal year 2013 budget request on behalf of our agency and the
American public we serve. We would appreciate any assistance you can
provide in ensuring the American public receives the critical and
necessary service they deserve from the Social Security Administration.
On behalf of NCSSMA members nationwide, thank you for the
opportunity to submit this written testimony.
______

Prepared Statement of the National Energy Assistance Directors'
Association
The members of National Energy Assistance Directors' Association
(NEADA), representing the State directors of the Low Income Home Energy
Assistance Program (LIHEAP) would like to first take this opportunity
to thank the members of the subcommittee for considering our funding
request for fiscal year 2013. The program is facing key challenges this
year as we address the high level of demand for program services as a
result of continuing weakness in the Nation's economy and high
unemployment rates.
LIHEAP is the primary source of heating and cooling assistance for
some of the poorest families in the United States. In fiscal year 2012,
the number of households receiving heating assistance remained at
record levels of about 8.9 million. In addition, close to 600,000 are
expected to receive cooling assistance. Of these households,
approximately 20 percent contain at least one member who served in the
military, a major increase from about 12 percent in 2008.
Veteran households in fact accounted for almost 35 percent of total
growth in the program between fiscal year 2008 and 2011. Of specific
interest, 12 percent of all veterans receiving LIHEAP have served in
Iraq or Afghanistan. Seven percent of military families are currently
serving in the military. The increase in veterans' families mirrors the
overall increase in LIHEAP across the country. It also clearly
demonstrates that LIHEAP is reaching some of the Nation's poorest
families--including those who have served their Nation in times of
peace as well as war.
Federal funding was decreased in fiscal year 2012 by 25 percent
from the comparable appropriation level in fiscal year 2011. During
this period, the average cost of home heating declined by 9.4 percent,
considerably less than the reduction in funding. The purchasing power
of the average home heating benefit declined from 42.1 percent to 34.7
percent. The President's request would further decrease the purchasing
power of LIHEAP, reducing the average grant to about 30 percent of the
cost of home heating.

EST. AVERAGE PERCENT OF HOME HEATING PURCHASED WITH LIHEAP (FISCAL YEAR 2008-FISCAL YEAR 2012)
[In percent]
----------------------------------------------------------------------------------------------------------------
Fiscal year Heating oil Natural gas Propane Electricity All fuels
----------------------------------------------------------------------------------------------------------------
2008............................ 15.6 38.6 17.5 38.7 32.5
2009............................ 27.4 55.5 27.5 52.6 47.8
2010............................ 26.2 64.0 28.7 50.5 49.7
2011............................ 18.1 57.6 22.9 43.4 42.1
2012............................ 13.8 49.0 18.6 33.8 34.7
----------------------------------------------------------------------------------------------------------------

fiscal year 2013 funding request and fiscal year 2014 advanced funding
request
For fiscal year 2013 we are requesting that the subcommittee
restore funding for LIHEAP to the authorized level of $5.1 billion to
maintain services for the 8.8 million households that received heating
assistance and the 600,000 expected to receive cooling assistance, and
provide $600 million in emergency funding authority. The additional
funds would allow States to restore the average benefit to about 42
percent of home heating costs plus provide sufficient flexibility in
the event that heating oil prices remain at record levels and other
fuel prices increase as a result of the continuing recovery in the
Nation's economy.
In addition, to these funding requests, we are concerned that
States will be hampered in their ability to administer their programs
efficiently due to the lack of advanced funding. The lack of a final
program appropriation prior to the beginning of the fiscal year creates
significant administrative problems for States in setting their program
eligibility guidelines. In order to address this concern, we are
requesting advance appropriations of $5.1 billion for fiscal year 2014
and $600 million in emergency contingency fund authority.
liheap families are among the nation's poorest and most vulnerable.
In order to obtain a comprehensive demographic picture of LIHEAP
recipients and the characteristics of those who are helped as well as
who would be hurt by the program cuts, NEADA conducted a survey of
approximately 1,800 households that received LIHEAP benefits in fiscal
year 2011. The results show that LIHEAP households are among the
vulnerable in the country.
--40 percent have someone age 60 or older;
--72 percent have a family member with a serious medical condition;
--26 percent use medical equipment that requires electricity;
--37 percent went without medical or dental care;
--34 percent did not fill a prescription or took less than their full
dose of prescribed medication;
--19 percent became sick because the home was too cold; and
--85 percent of people with a medical condition are seniors.
Many LIHEAP recipients were unable to pay their energy bills:
--49 percent skipped paying or paid less than their entire home
energy bill;
--37 percent received a notice or threat to disconnect or discontinue
their electricity or home heating fuel;
--11 percent had their electric or natural gas service shut off in
the past year due to nonpayment, 24 percent were unable to use
their main source of heat in the past year because their fuel
was shut off, they could not pay for fuel delivery, or their
heating system was broken and they could not afford to fix it;
and
--17 percent were unable to use their air conditioner in the past
year because their electricity was shut off or their air
conditioner was broken and they could not afford to fix it.
LIHEAP's impact in many cases goes beyond providing bill payment
assistance by playing a crucial role in maintaining family stability.
It enables elderly citizens to live independently and ensures that
young children have safe, warm homes to live in. Although the
circumstances that lead each client to seek LIHEAP assistance are
different, LIHEAP links these stories by enabling people to cope with
difficult circumstances with dignity.
the faces of liheap
Households of all varieties receive LIHEAP assistance. However, the
positive impact on the most vulnerable members of society, including
the elderly, disabled, and very young children, is striking. LIHEAP
agencies in every State have continued to receive new requests for
assistance from families struggling in the most difficult economy we
have seen in decades. Finally, as many of these examples demonstrate,
LIHEAP is administered in many places by Community Actions Agencies
with deep ties to the people that they serve. Through their knowledge
and connection to their communities, in many cases they are able to
assist people in need at multiple levels, creating backward and forward
linkages that enable people to regain their footing and start fresh.
Help for the Elderly and Disabled
The elderly and disabled constitute some of the most vulnerable
members of society and a large number of those receiving energy
assistance. Many elderly and disabled clients are in poor health and
most live on small, fixed incomes. One such recipient, living in
Oklahoma, relies on LIHEAP throughout the year in order to prevent
utility shutoff, even planning her expenses around her small benefit.
After her rent, she is left with approximately $165/month to pay
electric, phone, natural gas, and water. This $165 must also be used to
pay for medications not covered by Medicare or Medicaid, and other
household expenses. She also knows she is eligible for winter heating
assistance in December, which although it does not cover the entire
bill, does cover enough to keep her utilities on until the next small
payment is made in January or February. She is unable to pay all of her
utilities and purchase medications each month so she alternates the
utilities she pays. LIHEAP is her lifeline for keeping her utilities
connected. Without it, she would likely go without medications in order
to keep her heat and electricity connected.
Back in December, the Illinois LIHEAP program received a request
for assistance from an 84 years old woman with no heat. She hadn't had
a working furnace for more than 2 years. Her daughter brought her in to
apply for LIHEAP. As her story unfolded the program staff learned that
she was heating her home with her cook stove and oven. She lives on
$612 a month social security, and relies on food pantries and LIHEAP to
make ends meet. Through LIHEAP, she was able to receive a new 90-
percent efficient furnace in December and a payment toward her
utilities. Representatives from the local community action agency went
to her home on the final inspection of the furnace and she met both
with a smile and a hug. She said that she was warm and doing well and
looking forward to having her house weatherized.
In Minnesota, an elderly couple was living on only social security
benefits, totaling $998 a month. They had prided themselves on being
self-sufficient for many years by keeping their thermostat set at 57
degrees and dressing in many layers. However, after they were referred
to the Minnesota Energy Assistance Program, they were able to heat
their home to a safer temperature, and afford better food. They thanked
the agency for giving them ``one of the best winters in many years.''
Those living with disabilities often face seriously challenges in
affording basic home necessities. One terminally ill 50-year old man
from Utah who applied for assistance had been hospitalized and released
several times for his severe health condition and had already had his
power shut off when he contacted the LIHEAP agency. His utility bill
had been transferred to his apartment complex's name, which they were
charging him for, and he was also in danger of eviction. He was living
on a fixed and limited social security income and a pension. Although
his income was higher than many LIHEAP recipients, he too was faced
with making the difficult choice between utility bills, doctor bills,
food, or medication. His local agency was able to see him through this
emergency and restore his utility connections, which were vital to
providing him heat during the cold winter months. LIHEAP allowed him to
afford the medications he needs without sacrificing heat in his home.
This past heating season also highlighted how dangerous it can be
for people living with disabilities to go without heat. In Maine, a
disabled woman was running out of heating oil. To conserve supplies she
was forced to turn her heat down extremely low. Her poorly insulted
home leaked warm air and moisture, eventually resulting in her door
freezing over completely. Her disability prevented her from removing
the ice and she became trapped inside her home. Through LIHEAP
assistance and Maine's Weatherization program, contractors were sent to
her home to melt the ice from around her door, seal the leaks that
contributed to her high energy bills, and provide her with fuel to heat
her home.
Finally, LIHEAP has been instrumental in improving the lives of
those faced with challenging health conditions. One Minnesota woman, a
longtime nurse in St. Paul, Minnesota, was diagnosed with degenerative
blindness in 2004. She was an avid jogger who completed marathons with
friends and enjoyed her career as a nurse. As her condition
deteriorated however, she found it dangerous to drive and nursing
became too difficult. She was devastated and worried about how she
would make ends meet without her job. She lived off her retirement
savings until they were almost exhausted, finally moving into an
assisted living apartment for low-income residents. Although she had
always prided herself on being frugal, conserving energy, keeping bills
low, and maintaining her credit score, she could no longer make it
without help. With the help of a health assistant, she applied for
energy assistance. She still lives in her small apartment, still prides
herself on being frugal and conserving energy.
Children
LIHEAP is critical for many families with small children and new
babies. A warm home is a pre-requisite for hospitals to release babies
and mothers after birth. The following family reached out for energy
assistance when their child was born during the winter and they could
not afford to heat their home. The mother had been employed as a full-
time nurse in a nursing home but had been let go when her doctor
ordered her to rest because her blood pressure was too high. Her
husband worked in the remodeling business, which was hit hard in the
recession.
The family was not able to pay their gas bill and by the time their
child was born the house was down to 40 degrees. Although they were
reluctant to ask for help, they contacted the Green Hills Community
Action Agency. Their energy assistance application was processed within
a day and the gas was turned back on. In their letter to the agency,
the family notes how helpful the staff was during a difficult time. The
mother has since gone back to work and they no longer need energy
assistance, but they said they would never forget how desperate they
felt and how much it meant to them to be able to bring their new child
home to a safe and warm house.
Older children are also impacted by shut-off notices. One mother
from Wisconsin had two school age children at home and was facing
electricity shut-off. The Wisconsin Crisis Assistance payment stopped
her impending disconnection. The mother's primary concern was the
effect the disconnection would have on children, who would not be able
to do their school work at home.
Illinois was also able to help a single mother of two to restore
her heat after her gas and electricity were shut off. This recipient
was forced to send her children to live with family members because the
home was too cold for them. After she received assistance from LIHEAP
both of the utilities were restores and her children were able to come
home. She was so thankful that she even sent the agency a thank you
card. In it she stated, ``I appreciate your role in helping to turn my
electricity and gas back on so my kids could come back home. For that
there are simply not enough ways to say thank you.''
Economic Conditions
Many families have found themselves in shut-off situations as a
result of the recession, including many that have never before sought
energy assistance. One such family in Georgia was living on $330 a week
in unemployment benefits. A single mother of two children, she was not
receiving child support and did not have close family members who could
assist her with bills. Her Georgia Power bill for 2 months was $651,
and it was scheduled for disconnection when she reached out for energy
assistance. The amount she owed was clearly unmanageable considering
her income. The help she received through LIHEAP allowed her to keep
her power on.
Another story from Iowa highlights how complicated it can be to
provide assistance to families whose assets have been completely
diminished. A single father of two children had been out of liquid
petroleum for a substantial amount of time. He had tried to deal with
the situation by shutting off the entire house to just two rooms and
using space heaters to heat those rooms. His hot water heater was
fueled by propane, so the family also did not have hot water. They were
boiling water on the stove for hot water for cleaning and bathing. His
kids were making the best of the situation and had draped blankets over
the furnishings to make tents and keep the heat in the enclosed areas.
Despite these difficult circumstances, he did not reach out for
assistance until his pipes froze and burst.
The father was employed, and was working long hours through a temp
agency but was not making enough to afford the $500 minimum fill for
his propane company. Although he was qualified for LIHEAP assistance,
the propane vendor told the agency that because the family was
completely out of fuel, they would have to have to pay for a leak test,
and pay a fee for same day delivery. If they did not order a full 250
gallons, there would be an additional ``under the minimum'' fee.
Because they were only eligible for $500 of assistance, the fees would
not allow them to fill to 250 gallons. However, the agency stepped in
to negotiate with the vendor, and was able to have some of the fees
removed. Although the family did not receive a full fill, they were
able to get substantial help, and have their heat and hot water
restored.
the need for liheap
Households reported enormous challenges despite the fact that they
received LIHEAP. However, they reported that LIHEAP was extremely
important. About 64 percent reported that they would have kept their
home at unsafe or unhealthy temperatures and/or had their electricity
or home heating fuel discontinued if it had not been for LIHEAP. Almost
98 percent said that LIHEAP was very or somewhat important in helping
them to meet their needs. In addition, 53 percent of those who did not
have their electricity or home heating fuel discontinued said that they
would have if it had not been for LIHEAP.
The members of NEADA recognize the difficult budget decisions that
you face as you consider funding levels for LIHEAP for fiscal year 2013
and advance funding for fiscal year 2014. We appreciate your interest
and continued support for LIHEAP. Please feel free to call upon us if
we can provide you with additional information.
______

Prepared Statement of Nemours
Nemours thanks Chairman Harkin, Ranking Member Shelby and members
of the subcommittee for the opportunity to submit written testimony on
the fiscal year 2013 Labor, Health an Human Services, Education, and
Related Agencies appropriations bill. Nemours, one of the Nation's
leading child health systems, is dedicated to improving children's
health and well-being by offering a spectrum of clinical treatment,
research, advocacy, educational health, and prevention services
extending to families in the communities it serves.
about nemours
Nemours is an internationally recognized children's health system
that owns and operates the Nemours/Alfred I. duPont Hospital for
Children in Wilmington, Delaware, along with major pediatric specialty
clinics in Delaware, Florida, Pennsylvania, and New Jersey. In 2012, it
will open the full-service Nemours Children's Hospital in Orlando,
Florida. Established as The Nemours Foundation through the legacy and
philanthropy of Alfred I. du Pont, Nemours offers pediatric clinical
care, research, education, advocacy, and prevention programs to all
families in the communities it serves.
In addition to its investments in clinical care, education and
treatment, Nemours has made significant investments in community-based
prevention programs, policies and practices to reach all children in
the community, not just those who cross our doors. Nemours Health and
Prevention Services, an operating division in Newark, Delaware, as well
as the Florida Prevention Initiative, lead Nemours' prevention work.
Community-based Prevention
As an integrated health system that is very engaged with the
community, Nemours sees first-hand the impact of chronic disease on our
Nation's children. We treat obese young children at our clinics, and we
know that unhealthy habits that contribute to obesity are starting at a
very young age. Over 20 percent of preschoolers are obese or
overweight, an alarming statistic. We know that much of what influences
their health is outside the realm of the healthcare system, which is
why we have made and will continue to make significant investments in
community-based prevention. We believe that investing in clinical and
community-based prevention is an important way to ensure that children
grow up to be healthy adults. We are supportive of the Prevention and
Public Health Fund (Fund) and the potential it holds to address obesity
and chronic disease. We are disappointed that to help finance the
Sustainable Growth Rate (SGR), Congress made significant cuts to the
fund. Physician reimbursement and prevention should not be pitted
against one another. Instead, physicians must be enlisted in the fight
to prevent disease and should be working closely with other community-
based partners to help families and children lead healthy, active
lifestyles, as is the case with Nemours-employed physicians. We urge
the subcommittee to utilize the resources provided from the Fund to
support the integration of clinical and community-based prevention and
to evaluate the outcomes associated with those investments. In
particular, we are supportive of Community Transformation Grants.
Community Transformation Grants (CDC)
Community Transformation Grants (CTGs) draw upon the best of what
we know works: strong coalitions, multi-sector, public-private
partnerships, evidence-based approaches, and evaluation. In Delaware,
Nemours has successfully used this combination of approaches to stem
the rising childhood obesity curve between 2006 and 2008. CTGs allow us
to build upon this foundation and spread what works to other
communities. The purpose of the grants is to support the
implementation, evaluation, and dissemination of evidence-based
community preventive health activities in order to reduce chronic
disease rates, prevent the development of secondary conditions, address
health disparities, and develop a stronger evidence-base of effective
prevention programming. We urge the subcommittee to provide $226
million for CTGs in fiscal year 2013, the level of support provided in
fiscal year 2012.
Children's Hospital Graduate Medical Education (HRSA)
Another important priority for Nemours is the healthcare workforce,
particularly the pediatric workforce. Children's hospitals care for
large numbers of children with complex health conditions. In order to
achieve high-quality clinical care and outcomes, these specialty
hospitals need to have well-trained residents and physicians. The
Children's Hospital Graduate Medical Education (CHGME) provides support
for Graduate Medical Education (GME) to freestanding children's
hospitals that train resident physicians. The program was created to
correct an unintended inequity in the level of Federal Graduate Medical
Education funding for pediatric teaching hospitals, as opposed to other
types of hospitals that are tied to the number of Medicare
beneficiaries being treated at the hospital. Free-standing children's
hospitals generally do not provide care to Medicare-eligible patients,
and were largely left out of the GME financing system. While CHGME has
helped address this inequity, support for children's hospitals still
lags behind Medicare support for adult teaching hospitals.
CHGME supports 55 free-standing children's hospitals in 30 States.
Of the 8,111 general pediatric residents in this country, approximately
45 percent of them train at a CHGME institution. Of the 4,883 pediatric
subspecialist residents in the country, 51 percent of them train at a
CHGME institution. In 2010, CHGME supported the training of almost
6,000 pediatric resident physicians. Upon completion of their training,
pediatric resident physicians become the primary care, specialty, and
subspecialty physicians that care for our children in the community.
This is a very important contribution to training our pediatric
workforce, which continues to experience shortages, particularly in
pediatric specialty care. A 2009 survey by the National Association of
Children's Hospitals and Related Institutions (NACHRI), now Children's
Hospital Association, found that national shortages contribute to
vacancies in children's hospitals that commonly last 12 months or
longer for a number of pediatric specialties. These vacancies often
result in longer wait times for children to see pediatric specialists.
Over 300 residents are trained each year at the Alfred I. duPont
Hospital for Children (AIDHC). They are on the front line for families
at our hospital, caring for patients 24 hours a day. They are also
training to become future clinicians who will practice independently in
general pediatrics specialties and subspecialties. In the outpatient
department, they become the primary care physicians (under attending
supervision) for numerous children. These trainees are also learning to
become researchers to advance pediatric medicine in the future.
The residents at AIDHC engage in many learning and volunteer
opportunities. During daily conferences, medical students, residents,
and attending physicians all come together to share knowledge and
discuss complex cases. Residents participate in retreats where our
attending physicians teach them about important topics such as patient
safety, reducing medical errors, end of life care, and communicating
with families. Along with an attending physician, residents volunteer
on Wednesday evenings to provide care at homeless shelters in
Wilmington. Some volunteer internationally, providing health education,
medical care and immunizations in Haiti and Guatemala. These training
components require the active participation of and close oversight by
the attending physician.
Unfortunately, the President's budget proposes reducing funding for
this program to $88 million in fiscal year 2013. We urge Congress to
reject this short-sighted cut and to continue to provide support for
training the next generation of pediatricians, pediatric specialists
and pediatric researchers. In fiscal year 2013, Nemours urges the
subcommittee to provide flat funding for the CHGME program ($265
million), at a minimum.
Child Care and Development Block Grant--Child Care Quality Initiative
(ACF)
From high obesity rates to poor literacy levels, children in the
United States face a host of obstacles to achieving the goal of living
healthy, happy, and productive lives. It is alarming that over 20
percent of pre-school aged children are obese or overweight, and
reading failure affects 30 percent of our Nation's children. In order
to ensure the healthy development of our children, we must reach them
in as many settings as possible, including the places where they live,
learn, and play. Approximately 12 million children in the United States
spend time in child care outside their homes, making it a critical
setting affecting the health and development of our Nation's children.
To that end, we must ensure that we are providing the highest quality
early care and education possible.
The President's budget proposal includes $300 million for a Child
Care Quality Initiative within the Child Care and Development Block
Grant (CCDBG) to help ensure that children enter kindergarten ready to
succeed. This initiative seeks to build on the progress of the Race to
the Top--Early Learning Challenge (RTT-ELC). Nemours supports
investments in improving the quality of child care programs by ensuring
that child care providers have the training to help them meet higher-
quality standards. Nemours supports funding the President's request for
a Child Care Quality Initiative to improve the quality of early
childhood programs in the United States, promote positive child
outcomes, and ensure that our children enter kindergarten healthy and
ready to learn.
conclusion
Nemours appreciates the opportunity to submit written testimony. As
an integrated child health system, we have prioritized investments in
clinical and community-based prevention and our workforce because we
believe that in the long-run these investments will bend the health
curve and the cost curve. We recognize that the Nation's fiscal
situation requires a close examination of the programs and priorities
that the Federal Government funds. As you make these critical funding
decisions, we hope that prevention, quality and the healthcare
workforce will remain priorities of the subcommittee in fiscal year
2013.
______

Prepared Statement of the Nephcure Foundation
Summary of recommendations for fiscal year 2013:
--$32 billion for the National Institutes of Health (NIH) and a
corresponding increase to the National Institute of Diabetes
and Digestive and Kidney Diseases (NIDDK).
--Continue to support the Nephrotic Syndrome Rare Disease Clinical
Research Network at the Office of Rare Diseases Research
(ORDR).
--Support continued expansion of the FSGS/NS research portfolio at
NIDDK and the National Institute on Minority Health and Health
Disparities (NIMHD) by funding more research proposals for
glomerular disease.
Nephrotic syndrome (NS) is a collection of signs and symptoms
caused by diseases that attack the kidney's filtering system. These
diseases include focal segmental glomerulosclerosis (FSGS), Minimal
Change Disease (MCD) and Membranous Nephropathy (MN). When affected,
the kidney filters leak protein from the blood into the urine and often
cause kidney failure which requires dialysis or kidney transplantation.
According to a Harvard University report, 73,000 people in the United
States have lost their kidneys as a result of FSGS. Unfortunately, the
causes of FSGS and other filter diseases are very poorly understood.
FSGS is the second leading cause of NS and is especially difficult
to treat. There is no known cure for FSGS and current treatments are
difficult for patients to endure. These treatments include the use of
steroids and other dangerous substances which lower the immune system
and contribute to severe bacterial infections, high blood pressure and
other problems in patients, particularly child patients. In addition,
children with NS often experience growth retardation and heart disease.
Finally, NS caused by FSGS, MCD or MN is idiopathic and can often
reoccur, even after a kidney transplant.
FSGS disproportionately affects minority populations and is five
times more prevalent in the African-American community. In a
groundbreaking study funded by NIH, researchers found that FSGS is
associated with two APOL1 gene variants. These variants developed as an
evolutionary response to African sleeping sickness and are common in
African-Americans.
FSGS has a large social impact in the United States. FSGS leads to
end-stage renal disease (ESRD) which is one of the most costly chronic
diseases to manage. In 2007, the Medicare program alone spent $24
billion, 6 percent of its entire budget, on ESRD. In 2005, FSGS
accounted for 12 percent of ESRD cases in the United States, at an
annual cost of $3 billion. It is estimated that there are currently
approximately 20,000 Americans living with ESRD due to FSGS.
Research on FSGS could achieve tremendous savings in Federal
healthcare costs and reduce health status disparities. For this reason,
and on behalf of the thousands of families that are significantly
affected by this disease, we recommend the following:
--$32 billion for the National Institutes of Health (NIH) and a
corresponding increase to the National Institute of Diabetes
and Digestive and Kidney Diseases (NIDDK).
--Continue to support the Nephrotic Syndrome Rare Disease Clinical
Research Network (NEPTUNE) at the Office of Rare Diseases
Research (ORDR).
--Support continued expansion of the FSGS/NS research portfolio at
NIDDK and the National Institute on Minority Health and Health
Disparities (NIMHD) by funding more research proposals for
glomerular disease.
Encourage FSGS/NS Research at NIH
There is no known cause or cure for FSGS and scientists tell us
that much more research needs to be done on the basic science behind
FSGS/NS. More research could lead to fewer patients undergoing ESRD and
tremendous savings in healthcare costs in the United States.
With collaboration from other Institutes and Centers, ORDR
established the Rare Disease Clinical Research Network. This network
provided an opportunity for the NephCure Foundation, the University of
Michigan, and other university research health centers to come together
to form the Nephrotic Syndrome Study Network (NEPTUNE). NEPTUNE is
developing a database of NS patients who are interested in
participating in clinical trials which would alleviate the problem
faced by many rare disease groups of not having access to enough
patients for research. We urge the subcommittee to continue its support
for RDCRN and for NEPTUNE, which has tremendous potential to make
significant advancements in NS and FSGS research.
The NephCure Foundation is also grateful to the NIDDK for issuing a
program announcement (PA) that serves to initiate grant proposals on
glomerular disease. This PA was issued in March 2007 and utilizes the
R01 mechanism to award funding to glomerular disease researchers. In
February 2010 the PA was re-released and is now scheduled to expire in
2013. We ask the subcommittee to encourage NIDDK to continue to issue
glomerular disease PAs.
Due to the disproportionate burden of FSGS on minority populations,
the NephCure Foundation feels that it is appropriate for NIMHD to
develop an interest in this research. We ask the subcommittee to
encourage ORDR, NIDDK, and NIMHD to collaborate on research that
studies the incidence and cause of this disease among minority
populations. We also ask the Subcommittee to urge NIDDK and the NIMHD
to undertake culturally appropriate efforts aimed at educating minority
populations about glomerular disease.
______

Prepared Statement of the National Hispanic Council on Aging
The National Hispanic Council on Aging (NHCOA)--the leading
national organization working to improve the lives of Hispanic older
adults, their families, and caregivers--thanks you for the opportunity
to submit written testimony. Wisely investing in the future and
implementing programs that will strengthen our country is a
particularly daunting task given the limited resources and constraints
at hand. Therefore, NHCOA recognizes the difficult decisions that lie
ahead for your committee. We write to you today to express our support
for the fiscally sensible programs created by the Older Americans Act,
and to request they be appropriated sufficient funds to ameliorate the
impending cuts of the Budget Control Act of 2011.
For more than 30 years, NHCOA has been a strong voice dedicated to
ensuring our Nation's Hispanic seniors--the fastest growing segment of
the United State's rapidly expanding aging population--can age
healthily and with dignity. Alongside its Hispanic Aging Network of
nearly 40 community-based organizations across the country, NHCOA
reaches 10 million Hispanics each year. NHCOA integrates research,
policy, and practice to tackle the unique challenges Latino seniors
face as they age, and by educating and empowering them to be better
advocates for themselves. As an integral part of this mission, NHCOA
incorporates a special focus on families and caregivers of Hispanic
older adults in all its programmatic priorities, recognizing the
paramount importance of family in the Latino community.
Older Americans Act programs, implemented by the Administration on
Aging, effectively serve older adults across the country, while also
providing a wide variety of services that are flexible enough to meet
the needs of every community. The Older Americans Act authorizes
programs that train families to support their loved ones, put people
back to work, put food on the table, eliminate elder abuse, and help
communities develop the policies they need to help their older adults
age with dignity. Because of programs that provide basic necessities
like Meals on Wheels, there are fewer older adults having to choose
between putting food on the table and filling their prescription. As
appropriators, your support is critical for the continued success of
these lifesaving programs.
The population of Hispanic older adults, as well as the population
of older adults in general, is growing rapidly. Every 7 seconds, today,
and for the next 20 years, someone in the United States will turn 60.
In terms of the Hispanic community, we have about 3 million Latino
elders. By 2050, that number will increase to 17 million. Moreover, the
Hispanic community as a whole is projected to grow to 30 percent of the
entire U.S. population by 2050. That means nearly 1 in 3 people will be
Hispanic. By 2019, the Latino senior population will become the largest
non-White elder population in the United States.
Funding for the programs of the Older Americans Act has not grown
to match this population increase. Therefore, the impending cuts of the
Budget Control Act of 2011 will decrease its ability to keep pace with
the growth of the U.S. aging population. A reduction in these services
will mean that fewer people will have access to home delivered meals,
communities will have less funding to operate senior centers, and
families will have less support in caring for their loved ones. These
programs make a vital difference in communities across the country, but
to keep effectively serving the growing population, an adequate level
of funding is imperative.
Hispanics face a variety of challenges that make aging particularly
difficult. Many Hispanic older adults have spent their lives in jobs
that have not helped them prepare for their later years. Low-wage,
physically demanding jobs are all too common in the Latino community,
and these jobs offer little in the way of healthcare and pension
benefits. As a result, many Hispanics enter their golden years with
little money saved and little or no previous access to health
insurance. Cultural and linguistic differences are additional barriers
to accessing needed services. All of these economic, physical, and
social factors combined result in Hispanic older adults earning below
average Social Security benefits, enduring chronic health problems at
disparate rates, and having a harder time gaining access to needed
services.
Last year, an organization called Hispanics in Philanthropy
released a study about the programs of the Older Americans Act and the
difficulties those programs faced in serving Hispanic communities. The
study found that many communities were unable to deliver the services
and information necessary to help Hispanic older adults, despite being
readily available. Many communities lack the financial resources to
hire and train new workers to serve the rapidly aging Hispanic
population. Appropriating more money for Older Americans Act programs
will allow communities to better serve their older adults and also to
embrace their growing diversity.
NHCOA has worked and spoken with Hispanic older adults and their
families across the country, and though the needs and concerns of the
population are diverse, they were unified in their support for the
Older Americans Act as a main vehicle to address the struggles of
simply making ends meet in their community. Every day, Hispanic older
adults must decide what to sacrifice--food on the table, rent and
utilities, or medications. Family members juggle multiple jobs to care
for older adults in their families and are unaware of existing
opportunities for caregiver training. Incidents of elder abuse are not
reported because older adults do not know where to turn. Hispanic older
adults also suffer disproportionately from chronic medical conditions
like diabetes, are less likely to manage hypertension, and are
significantly more likely to suffer from HIV/AIDS. With sufficient
funding, however, the Older Americans Act is unequipped to adequately
address these problems.
Funding Older Americans Act programs is a wise investment in the
future. Nutrition and health management programs, which are proven
effective at reaching Hispanic older adults, can keep minor health
problems from becoming chronic, or even life threatening conditions.
The National Family Caregiver Support Program offers trainings and
services that are flexible enough to meet the needs of every community.
Elder abuse prevention programs have the potential to save lives.
Through small investments that help older adults age in dignity, we can
achieve real savings in more costly programs, such as Medicare and
Medicaid. Furthermore, making an investment to train service providers
on how to effectively work with a diversifying older adult population
is a necessary preemptive measure and cannot happen at a better time.
NHCOA respectfully asks that your committee provide increased
funding to Older Americans Act programs to help them withstand the
impending cuts from the Budget Control Act of 2011. This increased
appropriation will not only allow communities to maintain the services
and supports they already offer, but it will also improve their
capacity to serve the rapidly growing diverse older adult population in
the United States.
______

Prepared Statement of the National Head Start Association
Chairman Harkin, Ranking Member Shelby, thank you for allowing the
National Head Start Association (NHSA) submit testimony in support of
funding for Head Start and Early Head Start in fiscal year 2013. Head
Start is a national commitment to provide critical early education,
health, nutrition, child care, parent involvement and family support
services in return for a lifelong measurable impact on the low-income
children and families. Today, as our Nation's children face greater
obstacles than ever, there is a significant need to prepare the next
generation for success in school and later in life, and Head Start has
a proven track record of accomplishing this. NHSA is grateful that
Congress and the President made a solid commitment to quality early
childhood education in fiscal year 2012 by providing funding to
maintain services for children currently served by Head Start and Early
Head Start programs.
Quality early education prepares the Nation's youngest children for
a lifetime of learning. In fact, studies show that for every $1
invested in a Head Start child, society earns at least $7 back through
increased earnings, employment, and family stability; and decreased
welfare dependency, crime costs, grade repetition, and special
education. But the economy has taken a toll on the program as well.
During this most recent recession, Head Start and Early Head Start
directors have experienced rapidly rising operating costs that may
eventually affect their ability to maintain program size.
NHSA hopes that this Subcommittee will support the administration's
drive to improve accountability, as well as account for the rising cost
of maintaining programs. Though we appreciate the President's request
for an $85 million increase over the fiscal year 2012 enacted level,
after extensive conversations and input from the field we recognize
that it is not enough. The Head Start community is proposing an
increase of $325 million over fiscal year 2012 to provide the funding
necessary to ensure that Head Start centers can meet the rising costs
of service for an additional school year, improve access for vulnerable
infants, and meet the requirements of the 2007 Head Start
Reauthorization Act.
Head Start Fixed Costs Rising
Though funding for Head Start has increased significantly in recent
budget years, the cost of serving families has risen at a much faster
pace. When surveyed, a full 83 percent of Head Start centers reported
that their costs have increased just over the past year--in fact, 25
percent of those who responded report that their fixed costs, including
maintenance, transportation, and insurance, have increased by more than
11 percent over the last 12 months. In some areas, rent on facilities
alone has gone up between 5-10 percent. It is an enormous task to keep
costs low for what is a very comprehensive model.
Though center directors have some flexibility to streamline and try
to be more efficient, there are limits to how far they can go. Most
centers have already laid off staff, closed facilities and consolidated
programs to save costs, and are leaning more than ever on other
community partners to help provide health, employment, and other
services that are required by the model. The Head Start community is
reaching its limit on how far it can take this practice, given
statutory quality standards. The only logical next step for many
programs may in fact be to change their service delivery method which
can result in moving from full-day to part-day service, or worse,
reducing the number of children it can enroll.
Energy costs have gone up significantly, and an overwhelming
majority of programs are finding it difficult to keep up with fuel
costs for the transportation of kids to and from the center. This is
particularly challenging in rural areas. One Idaho Tribal Head Start
program spends an astonishing $1,000 per month on gasoline. They
believe that they must continue to provide transportation because, as
the director says, ``Many of our families can barely afford gas for
work, let alone transport their child to Head Start.''
Deferred maintenance of Head Start centers poses its challenges as
well. At one Western Iowa Head Start, they spent $53,000 on one bus
that only holds 16 kids--to replace one of their buses among a fleet
that is nearly 20 years old. Many other centers, operating in older
facilities, hope the roof will hold out one more year, or that the
playground equipment will remain solid and safe. Most programs must
wait until the end of a program year to decide what can be fixed within
the budget. Regardless, the centers are judged by frequent monitors who
have the ability to demand change when they see a potential hazard--
with the additional funds being requested, Head Start directors could
do more to prevent potential safety hazards.
Head Start programs also need to adapt to changing regulations. The
Consumer Product Safety Commission released new rules regarding crib
safety and Early Head Start programs must now replace all their cribs.
Head Start centers also must implement new data systems that will track
more nuanced child outcomes data. Even the smallest programs report
costs upwards of $5,000 just for the tracking software. The City of
Chicago Head Start program is spending an unexpected $12,000 on new
cribs this year, and has spent a staggering $3,000,000 on new data
collection systems.
Finally, Head Start centers must provide health insurance for
staff. These costs have increased rapidly. In Louisiana, the Iberville
Parish Council Head Start, which serves 360 children and employs 61
teachers and staff at 6 centers, has struggled to make ends meet
because of rising health insurance and other costs. Ultimately, the
Parish Council voted to relinquish control of the program entirely and
turn it over to the Federal Government rather than tell families they
could not serve their children because it, as a local entity, could not
afford to continue subsidizing the increasing costs. The director said
of the decision, ``The Federal Government wants you to run a Cadillac
program on Chevrolet prices.''
Head Start Salaries Are Noncompetitive
Another pressing cost concern that is directly related to a child's
progress is the quality of teachers. Five years ago, a bipartisan
Congress passed, and President George W. Bush signed, the Improving
Head Start for School Readiness Act of 2007 (Public Law 110-134).
Included in this reauthorization were a number of welcomed quality
improvement measures for Head Start and Early Head Start programs;
particularly, requirements for more-qualified teachers.
Specifically, by September 30, 2013, at least 50 percent of Head
Start teachers nationally are required to have a Bachelor's Degree, an
Advanced Degree, or an equivalent degree in a field related to early
childhood education. I am pleased to share that the Head Start
community has already met this requirement.
In order to achieve compliance, Head Start directors encouraged
their staff to obtain degrees. When possible they helped supplement
tuition and costs in order to ensure that staff would stay on once the
degree was obtained. But the market for early childhood teachers with
college degrees is very competitive and it has become extremely
difficult to keep these credentialed employees in place. Qualified
staff comes at a price, a price the Head Start budget does not easily
afford.
According to data collected by the PIR, in 2010, a Head Start
teacher with a CDA made on average $22,329 per year; a teacher with a
graduate degree $35,194. The average across all Head Start teachers is
$27,880. This is, according to the Center for Law and Social Policy,
considerably less than the average salary for a preschool teacher in
elementary in secondary schools, which was $42,150 in 2010. Young
graduates of education schools, moreover, are not choosing early
education as a viable career path.
A Bachelor's degree qualifies them for any number of jobs outside
of early education. Some employees leave to work for the local bank or
another business, where the salaries and benefits much more competitive
and better for their families. After all, many of these newly
credentialed individuals were once Head Start parents themselves, due
to the early focus on ``parents as teachers.'' We cannot and do not
fault them for rising out of poverty to make a better life for
themselves and their families.
This constant turnover is disruptive to Head Start children and
families, and is another burden on center directors who must find
qualified individuals to take their place, complete background checks
and have them fully oriented to the complicated expectations of the
program. With noncompetitive salaries, this is very difficult. In rural
areas, it is nearly impossible--the labor pool is limited, and
relatively unchanging.
Designation Renewal System
One of the most anticipated provisions of the 2007 Head Start Act
will require Head Start grantees designated as low-performing to
compete for the continuation of their grant. Different from the Head
Start grant termination process, this additional accountability
measure, the Designation Renewal System, is an enormous undertaking for
the Office of Head Start (OHS) and will certainly require additional
funds to execute. NHSA supports the Administration for Children and
Families' request for additional staff to ensure that the renewal
competitions are executed in a fair, transparent, and effective manner.
Last December, OHS began the first stages of the DRS by informing
an initial 132 grantees that would recompete for their funding. We are
very concerned with the potential impacts of transitioning a Head Start
program from one organization to another, in particular the impact on
children and families.
We therefore appreciate the administration's request for $40
million as a ``rainy day fund'' and understand these funds may indeed
be necessary. However, we hope that if any of these funds are not
utilized that they will be reinvested in the training and technical
assistance activity funds available to grantees. During this time of
change in the program, especially as new organizations may become Head
Start grantees; it will be helpful to assist everyone in our continued
drive to sustain excellence and remain compliant with all of the more
than 1,700 separate Head Start regulations.
The Gap Between Early Head Start and Head Start
When NHSA talks to the dedicated Head Start directors across the
country about how they could better serve their communities, so many of
them say they wish they could get to more children earlier. Across all
Head Start programs, centers are only able to serve less than 3 percent
of eligible infants.
The waiting lists are increasingly long, especially as the economy
continues to present significant challenges to the poor. Today, one in
five children are born into poverty--and eligible for Early Head Start.
In one center in Burien, Washington, the Early Head Start program
serves 30 infants, 10 of which are homeless, and 7 of which are
``special needs'' children. There are currently over 50 families on the
waitlist. Knowing all we know about the effectiveness of intervention
in these early years, NHSA strongly supports even a small investment in
increasing access to Early Head Start.
Centers of Excellence
Last, the National Head Start Association supports continued
investment in the now 20 Centers of Excellence in Early Childhood that
were named, but only partially funded, over the last 2 years--in the
following localities: Greensburg, Pennsylvania; Baltimore, Maryland;
Mount Vernon, Ohio; Houghton, Michigan; Owensboro, Kentucky; Morganton,
North Carolina; Birmingham, Alabama; Denver, Colorado; Albuquerque, New
Mexico; Dunkirk, New York; Laguna, New Mexico; Rock Island, Illinois;
Reno, Nevada; Modesto, California; Marshalltown, Iowa; Elmsford, New
York; Tulsa, Oklahoma; Hugo, Oklahoma; Mayaguez, Puerto Rico; and
Chattanooga, Tennessee. The resources and tools these Centers have
designed and provided to the Head Start community are effective, well-
designed, and serve as models for other Early/Head Start programs to
emulate. Their innovative practices and peer-learning approaches will
be much more in demand as practitioners adjust to the requirements of
the 2007 law.
Head Start Works
Since 1965, Head Start (and now Early Head Start as well) has been
providing a proven, evidence-based comprehensive program to prepare at-
risk children and families for a stable, successful life. Head Start
improves the odds and the options for at-risk kids for a lifetime.
Research shows that Head Start has genuine cost benefits--
conservatively, it is estimated to yield a benefit-cost ratio as large
as $7 to $1.\1\
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\1\ Ludwig, J. and Phillips, D. (2007). The Benefits and Costs of
Head Start. Social Policy Report. 21 (3: 4); Meier, J. (2003, June 20).
Interim Report. Kindergarten Readiness Study: Head Start Success.
Preschool Service Department, San Bernardino County, California.
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Head Start saves hard-earned tax dollars by decreasing the need for
children to receive special education services in elementary
schools.\2\ Data analysis of a recent Montgomery County Public Schools
evaluation found that a MCPS child receiving full-day Head Start
services when in Kindergarten requires 62 percent fewer special
education services and saves taxpayers $10,100 per child annually.\3\
States can save $29,000 per year for each person that they don't need
to incarcerate because Head Start children are 12 percent less likely
to have been charged with a crime.\4\
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\2\ Barnett, W. (2002, September 13). The Battle Over Head Start:
What the Research Shows. Presentation at a Science and Public Policy
Briefing Sponsored by the Federation of Behavioral, Psychological, and
Cognitive Sciences.
\3\ NHSA Public Policy and Research Department analysis of data
from a Montgomery County Public Schools evaluation. See Zhao, H. &
Modarresi, S. (2010, April). Evaluating lasting effects of full-day
prekindergarten program on school readiness, academic performance, and
special education services. Office of Shared Accountability, Montgomery
County Public Schools.
\4\ Reuters. (2009, March). Cost of locking up Americans too high:
Pew study; Garces, E., Thomas, D. and Currie, J. (2002, September).
Longer-term effects of Head Start. American Economic Review, 92 (4):
999-1012.
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A study released by the National Bureau of Economic Research shows
that Head Start parents are more actively engaged in their children's
academic careers long after the child has entered kindergarten, a key
ingredient of a learning environment that leads to future success.\5\
The Baltimore Education Research Consortium (BERC) released findings in
March 2012 related to chronic absenteeism in Kindergarten--which
studies have shown to relate to poorer overall academic achievement as
late as 5th grade. BERC's research shows that students who had attended
Head Start showed the highest attendance rates in kindergarten and the
lowest level of chronic absence in first through third grades.\6\ These
non-test-score findings help illustrate the long-term viability of the
program--today, the more than 27 million Head Start graduates are
working every day in our communities to make our country and our
economy strong.
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\5\ National Bureau of Economic Research. (2011, December).
Children's Schooling and Parents' Investment in Children: Evidence from
the Head Start Impact Study (Working Paper No. 17704). Cambridge, MA:
A. Gelber & A. Isen.
\6\ Baltimore Education Research Consortium (2012, March). Early
Elementary Performance and Attendance in Baltimore City Schools' Pre-
Kindergarten and Kindergarten. Baltimore, Maryland: F. Connelly &
Olson, L.
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Head Start families with their increased health literacy also show
immediate healthcare benefits, including lower Medicaid costs-on
average $232 per family. The program has also reduced mortality rates
from preventable conditions for 5- to 9-year olds by as much as 50
percent.\7\ Studies have shown that the program reduces healthcare
costs for employers and individuals because Head Start children are
less obese,\8\ 8 percent more likely to be immunized,\9\ and 19 to 25
percent less likely to smoke as an adult.\10\
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\7\ Ludwig, J. and Phillips, D. (2007) Does Head Start improve
children's life chances? Evidence from a regression discontinuity
design. The Quarterly Journal of Economics, 122 (1): 159-208.
\8\ Frisvold, D. (2006, February). Head Start participation and
childhood obesity. Vanderbilt University Working Paper No. 06-WG01.
\9\ Currie, J. and Thomas, D. (1995, June). Does Head Start Make a
Difference? The American Economic Review, 85 (3): 360.
\10\ Anderson, K.H., Foster, J.E., & Frisvold, D.E. (2009).
Investing in health: The long-term impact of Head Start on smoking.
Economic Inquiry, 48 (3), 587-602.
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The Head Start community understands the budgetary pressures the
Federal Government is facing and is so very grateful for the commitment
shown by this Congress and the President to keep early learning, and
Head Start in particular, a priority. The research shows that the
``achievement gap'' is apparent as early as the age of 18 months--we
will spend substantially more downstream if these same young people are
not prepared to graduate high-school, attend college and lead
prosperous lives. We urge the Subcommittee to fully invest in Head
Start and Early Head Start to improve accountability, increase access,
and ensure that we have a stable and prosperous workforce for
generations to come.
______

Prepared Statement of the National Kidney Foundation
End Stage Renal Disease (ESRD), which requires dialysis or
transplantation for survival, is the only disease-specific coverage
under Medicare, regardless of age or other disability. At the end of
2009, the number of Americans with ESRD totaled 558,239, including
113,908 new patients that year. Furthermore, CKD represented almost 8
percent of the Medicare population age 65 and over in 2009, but 22
percent of Medicare costs for this age group. Complicating the cost and
human toll is the fact that CKD is a disease multiplier; patients are
very likely to be diagnosed with diabetes, cardiovascular disease, or
hypertension.
Despite this tremendous social and economic impact, no national
public health program focusing on early detection and treatment existed
until fiscal year 2006, when Congress provided $1.8 million to initiate
a Chronic Kidney Disease Program at the Centers for Disease Control and
Prevention (CDC). Congressional interest regarding kidney disease
education and awareness also is found in section 152 of the Medicare
Improvements for Patients and Providers Act of 2008 (MIPPA, Public Law
110-275), which directed the Secretary to establish pilot projects to
increase screening for Chronic Kidney Disease (CKD) and enhance
surveillance systems to better assess the prevalence and incidence of
CKD. Cost-effective treatments exist to potentially slow progression of
kidney disease and prevent its complications, but only if individuals
are diagnosed before the latter stages of CKD.
The CDC program is designed to identify members of populations at
high risk for CKD, develop community-based approaches for improving
detection and control, and educate health professionals about best
practices for early detection and treatment. The National Kidney
Foundation respectfully urges the Committee to maintain line-item
funding in the amount of $2.2 million for the Chronic Kidney Disease
Program at CDC. Continued support will benefit kidney patients and
Americans who are at risk for kidney disease, advance the objectives of
Healthy People 2020 and the National Strategy for Quality Improvement
in Health Care, and fulfill the mandate created by section 152 of
MIPPA.
The prevalence of CKD in the United States is higher than a decade
earlier. This is partly due to the increasing prevalence of the related
diseases of diabetes and hypertension. It is estimated that CKD affects
26 million adult Americans \1\ and that the number of individuals in
this country with CKD who will have progressed to kidney failure,
requiring chronic dialysis treatments or a kidney transplant to
survive, will grow to 712,290 by 2015 \2\. Kidney disease is the 8th
leading cause of death in the United States, after having been the 9th
leading cause for many years. Furthermore, a task force of the American
Heart Association noted that decreased kidney function has consistently
been found to be an independent risk factor for cardiovascular disease
(CVD) outcomes and all-cause mortality and that the increased risk is
present with even mild reduction in kidney function.\3\ Therefore
addressing CKD is a way to achieve one of the priorities in the
National Strategy for Quality Improvement in Health Care: Promoting the
Most Effective Prevention and Treatment of the Leading Causes of
Mortality, Starting with Cardiovascular Disease.
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\1\ Josef Coresh, et al. ``Prevalence of Chronic Kidney Disease in
the United States,''JAMA, November 7, 2007.
\2\ D.T. Gilbertson, et al., Projecting the Number of Patients with
End-Stage Renal Disease in the United States to the Year 2015. J Am Soc
Nephrol 16: 3736-3741, 2005.
\3\ Mark J. Sarnak, et al. Kidney Disease as a Risk Factor for the
Development of Cardiovascular Disease: A Statement from the American
Heart Association Councils on Kidney in Cardiovascular Disease, High
Blood Pressure Research, Clinical Cardiology, and Epidemiology and
Prevention. Circulation 2003: 108: 2154-69.
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CKD is often asymptomatic, especially in the early stages, and,
therefore goes undetected without laboratory testing. In fact, some
people remain undiagnosed until they have reached CKD Stage 5,
requiring dialysis or a kidney transplant. Accordingly, Healthy People
2020 Objective CKD-2 is to ``increase the proportion of persons with
chronic kidney disease (CKD) who know they have impaired renal
function.'' Screening and early detection provides opportunity for
interventions to foster awareness, adherence to medications, risk
factor control, and improved outcomes. Additional data collection is
required to precisely define the incremental benefits of early
detection on kidney failure, cardiovascular events, hospitalization and
mortality. Increasing the proportion of persons with CKD who know they
are affected requires expanded public and professional education
programs and screening initiatives targeted at populations who are at
high risk for CKD. As a result of consistent congressional support, the
National Center for Chronic Disease Prevention and Health Promotion at
CDC has instituted a series of projects that could assist in attaining
the Healthy People 2020 objective. However, this forward momentum will
be stifled and CDC's investment in CKD to date jeopardized if line-item
funding is not continued. Congress rejected the administration's
proposal to consolidate funding for chronic disease programs for fiscal
year 2012 and we urge you to oppose it for fiscal year 2013 as well.
As noted in CDC's Preventing Chronic Disease: April 2006, Chronic
Kidney Disease meets the criteria to be considered a public health
issue: (1) the condition places a large burden on society; (2) the
burden is distributed unfairly among the overall population; (3)
evidence exists that preventive strategies that target economic,
political, and environmental factors could reduce the burden; and (4)
evidence shows such preventive strategies are not yet in place.
Furthermore, CDC convened an expert panel in March 2007 to outline
recommendations for a comprehensive public health strategy to prevent
the development, progression, and complications of CKD in the United
States.
The CDC Chronic Kidney Disease program has consisted of three
projects to promote kidney health by identifying and controlling risk
factors, raising awareness, and promoting early diagnosis and improved
outcomes and quality of life for those living with CKD. These projects
have included the following:
--Demonstrating effective approaches for identifying individuals at
high risk for chronic kidney disease through State-based
screening (CKD Health Evaluation and Risk Information Sharing,
or CHERISH).
--Conducting an economic analysis by the Research Triangle Institute,
under contract with the CDC, on the economic burden of CKD and
the cost-effectiveness of CKD interventions.
--Establishing a surveillance system for Chronic Kidney Disease in
the U.S. Development of a surveillance system by collecting,
integrating, analyzing, and interpreting information on CKD
using a systematic, comprehensive and feasible approach will be
instrumental in prevention and health promotion efforts for
this chronic disease. The CDC CKD surveillance project has
built a basic system from a number of data sources, produced a
report and beta-tested a website. The next steps include
exploring State-based CKD surveillance data ideal for public
health interventions through the State department of health.
We believe it is possible to distinguish between the CKD program
and other categorical chronic disease initiatives at CDC, because the
CKD program does not provide funds to State health departments.
Instead, CDC has been making available seed money for feasibility
studies in the areas of epidemiological research and health services
investigation. Because the CKD program does not provide funds to State
health departments, we maintain it should be exempted from the changes
in the structure and budget of the National Center for Chronic Disease
Prevention and Health Promotion, at least until surveillance planning,
and studies of detection feasibility and economic impact are completed.
In summary, undetected Chronic Kidney Disease can lead to costly
and debilitating irreversible kidney failure. However, cost-effective
interventions are available if patients are identified in the early
stages of CKD. With the continued expressed support of Congress, the
National Kidney Foundation is confident a feasible detection,
surveillance and treatment program can be established to slow, and
possible prevent, the progression of kidney disease.
Thank you for your consideration of our testimony.
______

Prepared Statement of the National League for Nursing
The National League for Nursing (NLN) is the premiere organization
dedicated to promoting excellence in nursing education to build a
strong and diverse nursing workforce to advance the Nation's health.
With leaders in nursing education and nurse faculty across all types of
nursing programs in the United States--doctorate, master's,
baccalaureate, associate degree, diploma, and licensed practical--the
NLN has more than 1,200 nursing school and healthcare agency members,
36,000 individual members, and 27 regional constituent leagues.
The NLN urges the subcommittee to fund the following Health
Resources and Services Administration (HRSA) nursing programs:
--The Nursing Workforce Development Programs, as authorized under
Title VIII of the Public Health Service Act, at $251.099
million in fiscal year 2013; and
--The Nurse-Managed Health Clinics, as authorized under Title III of
the Public Health Service Act, at $20 million in fiscal year
2013.
nursing education is a jobs program
According to the U.S. Bureau of Labor Statistics (BLS), the
registered nurse (RN) workforce will grow by 26 percent from 2010 to
2020, resulting in 711,900 new jobs. This growth in the RN workforce
represents the largest projected numeric job increase from 2010 to 2020
for all occupations. The April 6, 2012, BLS Employment Situation
Summary--March 2012 likewise reinforces the strength of the nursing
workforce to the Nation's job growth. While the Nation's overall
unemployment rate was little changed at 8.2 percent for March 2012, the
employment in healthcare increased in March with the addition of 26,000
jobs at ambulatory healthcare services, hospitals, and nursing and
residential care facilities.
Nursing is the predominant occupation in the healthcare industry,
with more than 3.854 million active, licensed RNs in the United States
in 2010. BLS notes that healthcare is a critically important industrial
complex in the Nation. Growing steadily even during the depths of the
recession, healthcare is virtually the only sector that added jobs to
the economy on a net basis since 2001. Over the last 12 months,
healthcare added 365,800 jobs, or an average of 30,480 jobs per month.
The Nursing Workforce Development Programs provide training for
entry-level and advanced degree nurses to improve the access to, and
quality of, healthcare in underserved areas. The Title VIII nursing
education programs are fundamental to the infrastructure delivering
quality, cost-effective healthcare. The NLN applauds the subcommittee's
bipartisan efforts to recognize that a strong nursing workforce is
essential to a health policy that provides high-value care for every
dollar invested in capacity building for a 21st century nurse
workforce.
The current Federal funding falls short of the healthcare
inequities facing our Nation. Absent consistent support, recent boosts
to Title VIII will not fulfill the expectation of paying down on asset
investments to generate quality health outcomes; nor will episodic
increases in funding fill the gap generated by a 14-year nurse and
nurse faculty shortage felt throughout the entire United States health
system.
the nurse pipeline and education capacity
Although the recession resulted in some stability in the short-term
for the nurse workforce, policymakers must not lose sight of the long-
term growing demand for nurses in their districts and States. The NLN's
findings from its Annual Survey of Schools of Nursing--Academic Year
2009-2010 cast a wide net on all types of nursing programs, from
doctoral through diploma, to determine rates of application,
enrollment, and graduation. Key findings include:
--Expansion of nursing education programs impeded by shortage of
faculty and clinical placements. The overall capacity of
prelicensure nursing education continues to fall well short of
demand. Fully 42 percent of all qualified applications to basic
RN programs were met with rejection in 2010. Associate degree
in nursing (ADN) programs rejected 46 percent of qualified
applications, compared with 37 percent of baccalaureate of
science in nursing (BSN) programs. Notably, the Nation's
practical nursing (PN) programs turned away 40 percent of
qualified applications. A strong correlation exists between the
shortage of nurse faculty and the inability of nursing programs
to keep pace with the demand for new RNs. Increasing the
productivity of education programs is a high priority in most
States, but faculty recruitment is a glaring problem that will
grow more severe. Without faculty to educate our future nurses,
the shortage cannot be resolved.
--Yield rates continued to grow. Yield rates--a classic indicator of
the competitiveness of college admissions--remain
extraordinarily high among pre- and post-licensure nursing
programs. A stunning 94 percent of all applicants accepted into
ADN programs, and 93 percent of those accepted in PN programs,
went on to enroll in 2010. Yield rates among the other program
types were nearly as high, averaging 89 percent for RN-to-BSN
programs; 86 percent for RN diploma programs, master's in
nursing (MSN) programs, and doctoral programs; and 84 percent
for BSN programs.
nurse shortage affected by faculty shortage
A strong correlation exists between the shortage of nurse faculty
and the inability of nursing programs to keep pace with the demand for
new RNs. Increasing the productivity of education programs is a high
priority in most States, but faculty recruitment is a glaring problem
that likely will grow more severe. Without faculty to educate our
future nurses, the shortage cannot be resolved.
The NLN's findings from the 2009 Faculty Census show that:
--Shortages of faculty and clinical placements impeded expansion.--A
shortage of faculty continues to be cited most frequently as
the main obstacle to expansion by RN-to-BSN and doctoral
programs--indicated by 47 and 53 percent, respectively. By
contrast, prelicensure programs are more likely to point to a
lack of available clinical placement settings as the primary
obstacle to expanding admissions.
--Inequities in faculty salaries added to shortage difficulties.--
Despite a national shortage of nurse educators, in 2009 the
salaries of nurse educators remained notably below those earned
by similarly ranked faculty across higher education. At the
professor rank nurse educators suffer the largest deficit with
salaries averaging 45 percent lower than those of their non-
nurse colleagues. Associate and assistant nursing professors
were also at a disadvantage, earning 19 and 15 percent less
than similarly ranked faculty in other fields, respectively.
--Faculty staffing deficit expected to intensify as workforce reaches
retirement age.--The percentage of faculty ages 30 to 45 and
ages 46 to 60 both dropped by 3 percent between 2006 and 2009.
At the same time the percentage of full-time educators over age
60 grew dramatically from only 9 percent in 2006 to nearly 16
percent in 2009. Overall, 57 percent of part-time educators and
nearly 76 percent of full-timers were over the age of 45 in
2009.
title viii federal funding reality
Today's undersized supply of appropriately prepared nurses and
nurse faculty does not bode well for our Nation. The Title VIII Nursing
Workforce Development Programs are a comprehensive system of capacity-
building strategies that provide students and schools of nursing with
grants to strengthen education programs, including faculty recruitment
and retention efforts, facility and equipment acquisition, clinical lab
enhancements, and loans, scholarships, and services that enable
students to overcome obstacles to completing their nursing education
programs. HRSA's Title VIII data below provide perspective on a few of
the current Federal investments.
Nurse Education, Practice, Quality, and Retention Grants (NEPQR).--
NEPQR funds projects addressing the critical nursing shortage via
initiatives designed to expand the nursing pipeline, promote career
mobility, provide continuing education, and support retention. In
fiscal year 2011, NEPQR funded 106 infrastructure grants, including the
Nursing Assistant and Home Health Aide program awarding grants to 10
colleges or community-based training programs.
Comprehensive Geriatric Education Program (CGEP).--CGEP funds
training, curriculum development, faculty development, and continuing
education for nursing personnel who care for older citizens. In
academic year 2010-2011, 27 non-competing CGEP grantees provided
education to 3,645 RNs, 1,238 RN students, 870 direct service workers,
569 licensed practical/vocational nurses, 264 faculty, and 5,344 allied
health professionals.
Advanced Nursing Education (ANE) Program.--ANE supports
infrastructure grants to schools of nursing for advanced practice
programs preparing nurse-midwives, nurse anesthetists, clinical nurse
specialists, nurse administrators, nurse educators, public health
nurses, or other advanced level nurses. In academic year 2010-11, the
ANE Program supported 151 advanced nursing education projects and
enrolled 7,863 advanced nursing education students.
nurse-managed health clinics (nmhc)
NMHCs are defined as a nurse-practice arrangement, managed by
advanced practice registered nurses, that provides primary care or
wellness services to underserved or vulnerable populations. NMHCs are
associated with a school, college, university, or department of
nursing, federally qualified health center, or independent nonprofit
health or social services agency.
NMHCs deliver comprehensive primary healthcare services, disease
prevention, and health promotion in medically underserved areas for
vulnerable populations. Approximately 58 percent of NMHC patients
either are uninsured, Medicaid recipients, or self-pay. The complexity
of care for these patients presents significant financial barriers,
heavily affecting the sustainability of these clinics. While providing
access points in areas where primary care providers are in short
supply, expansion of NMHCs also increases the number of structured
clinical teaching sites available to train nurses and other primary
care providers. Appropriating $20 million in fiscal year 2013 to NMHCs
would increase access to primary care for thousands of uninsured people
in rural and underserved urban communities.
The NLN can state with authority that the deepening health
inequities, inflated costs, and poor quality of healthcare outcomes in
this country will not be reversed until the concurrent shortages of
nurses and qualified nurse educators are addressed. 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 who will need
our care. Without national efforts of some magnitude to match the
healthcare reality facing our Nation today, a calamity in nurse
education and in health care generally may not be avoided.
The NLN urges the subcommittee to strengthen the Title VIII Nursing
Workforce Development Programs by funding them at a level of $251.099
million in fiscal year 2013. We also recommend that the Nurse-Managed
Health Clinics, as authorized under Title III of the Public Health
Service Act, be funded at $20 million in fiscal year 2013.
______

Prepared Statement of the National Minority Consortia
The National Minority Consortia (NMC) \1\ submits this statement on
the fiscal year 2015 advance appropriations for the Corporation for
Public Broadcasting (CPB). The NMC is a coalition of five national
organizations dedicated to bringing unique voices and perspectives from
America's diverse communities into all aspects of public broadcasting
and other media, including content transmitted digitally over the
Internet. Our role has been crucial to public broadcasting's mission
for over 35 years. We are unique in the services we provide minority
producers for access, training and support. The NMC delivers important
and timely public interest content to our communities and to public
broadcasting. We ask the committee to:
---------------------------------------------------------------------------
\1\ Center for Asian American Media; Latino Public Broadcasting;
National Black Programming Consortium/Black Public Media; Native
American Public Telecommunications; Pacific Islanders in
Communications.
---------------------------------------------------------------------------
--Direct CPB to increase its efforts for diverse programming with
commensurate increases for minority programming and for
organizations and stations located within underserved
communities;
--Include report language, which recognizes the contribution of the
NMC and directs that the CPB partnership with us be expanded.
Specifically:

``The committee recognizes the importance of the partnership
CPB has with the National Minority Public Broadcasting
Consortia, which helps develop, acquire, and distribute
public television programming to serve the needs of African
American, Asian American, Latino, Native American, Pacific
Islander, and other viewers. As communities in the Nation
welcome increased numbers of citizens of diverse ethnic
backgrounds, local public television stations should strive
to meet these viewers' needs. With an increased focus on
programming to meet local community needs, the committee
encourages CPB to support and expand this critical
partnership.''; and

--Provide fiscal year 2015 advance appropriation for CPB of $445
million, in order to develop content that reaches across
traditional media boundaries, such as those separating
television and radio. We feel strongly that CPB should be
directed to engage in transparent and fair funding practices
that guarantee all applicants equal access to these public
resources. In particular, we urge Congress to direct CPB to
insert language in all of its funding guidelines that
encourages and rewards public media that fully represents and
reaches a diverse American public.
While public broadcasting continues to uphold strong ethics of
responsible journalism and thoughtful examination of American history,
life and culture, it has not kept pace with our rapidly changing public
as far as diversity is concerned. Members of minority groups continue
to be underrepresented on programming and oversight levels within and
in content production. This is unacceptable in America today, where
minorities comprise over 35 percent of the population.
Public broadcasting has the potential to be particularly important
for our growing minority and ethnic communities, especially as we
transition to a broadband-enabled, 21st century workforce that relies
on the skills and talent of all of our citizens. While there is a niche
in the commercial broadcast and cable world for quality programming
about our communities, it is in the public broadcasting sphere where
minority communities and producers should have more access and capacity
to produce diverse high-quality programming for national audiences. We
therefore, urge Congress to insert strong language in this act to
ensure that this is the case and that these opportunities are made
available to minorities and other underserved communities.
About the National Minority Consortia.--With primary funding from
the CPB, the NMC serves as an important component of American public
television as well as content delivered over the Internet. By training
and mentoring the next generation of minority producers and program
managers as well as brokering relationships between content makers and
distributors (such as PBS, APT and NETA), we are in a perfect position
to ensure the future strength and relevance of public television and
radio television programming from and to our communities.
Each Consortia organization is engaged in cultivating ongoing
relationships with the independent producer community by providing
technical assistance and program funding, support and distribution.
Often the funding we provide is the initial seed money for a project.
We also provide numerous hours of programming to individual public
television and radio stations, programming that is beyond the reach of
most local stations. To have a real impact, we need funding that
recognizes and values the full extent of minority participation in
public life.
CPB Funds for the National Minority Consortia.--The NMC receives
funds from two portions of the CPB budget: organizational support funds
from the Systems Support and programming funds from the Television
Programming funds. The organizational support funds we receive are used
for operations requirements and also for programming support activities
and for outreach to our communities and systemwide within public
broadcasting. The programming funds 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 funds. A brief description of our organizations
follows:
--Center for Asian American Media.--CAAM's mission is to present
stories that convey the richness and diversity of Asian
American experiences to the broadest audience possible. We do
this by funding, producing, distributing and exhibiting works
in film, television and digital media. Over our 32-year history
we have provided funding for more than 200 projects, many of
which have gone on to win Academy, Emmy and Sundance awards,
examples of which are ``Daughter from Danang''; ``Of Civil
Rights and Wrongs: The Fred Korematsu Story''; and ``Maya Lin:
A Strong Clear Vision''. CAAM presents the annual San Francisco
International Asian American Film Festival and distributes
Asian American media to schools, libraries and colleges. CAAM's
newest department, Digital Media, is becoming a respected
leader in bringing innovative content and audience engagement
to public media. CAAM is partnering with Pacific Islanders in
Communications on a documentary about Youtube ukulele sensation
Jake Shimabukuro.
--Latino Public Broadcasting.--LPB supports the development,
production and distribution of public media content that is
representative of Latino people, or addresses issues of
particular interest to Latino Americans. Since 1998, LPB has
awarded over $8 million to Latino Independent Producers, and
provided over 150 hours of compelling programming to public
television. LPB supports over 300 Latino filmmakers per year
through professional development initiatives. LPB also produces
``Voces'', the only Latino anthology series on public
television. In addition, LPB presented the PBS concert special,
``In Performance at the White House: Fiesta Latina'', that was
re-broadcast on Telemundo and V-me and Latin Music USA, a four
part series about the history and impact of Latino music on
American culture which reached 14.7 million viewers, 16 percent
of whom were Hispanic households (well above the PBS average).
Currently LPB is working on ``The Latino Americans'', a
bilingual 6 part series about the history of Latinos in the
United States. This past year, LPB launched the Equal Voice
Community Engagement Campaign using the documentary film
``Raising Hope: The Equal Voice Story'', a film about
strategies to overcome poverty. The community engagement
campaign helped PBS stations demonstrate how they too can
become advocates for their communities. Currently, LPB is
working on a 6 hour series titled ``The Latino Americans'',
about the history of Latinos in the United States.
--NBPC/Black Public Media works to increase capacity in diverse
communities to create, distribute and use public media.
Throughout its history, its mission has been two-fold: building
capacity in new generations of creators of social issue media
and broadening the pool of stakeholders in public media
institutions. Over the past 5 years, in addition to supporting
producers who create programming for public television and
other platforms, NBPC/Black Public Media has convened and
mentored over 500 digital media professionals and created the
Public Media Corps (PMC) to address an urgent need in our
communities at the grassroots level. Currently entering its
third year, the PMC, in partnership with K-12 schools,
libraries and universities, is a framework for supporting
creative, sustainable and community-initiated methods for using
media and media-technology in underserved communities by
deploying public media content and tools. In 2012, we presented
the fourth season of its critically acclaimed series ``AfroPop:
the Ultimate Cultural Exchange'', which features independent
perspectives from the African diaspora, including the African
continent, the Caribbean and the Americas, as well as numerous
hours of prime-time television programming to PBS. Currently,
NBPC/Black Public Media is in production on a television
special and related engagement activities that support CPB's
American Graduate initiative to combat the drop out crisis in
American public schools and two new web-exclusive content
series by emerging black filmmakers.
--Native American Public Telecommunications.--NAPT shares Native
stories with the world. We advance media that represents the
experiences, values, and cultures of American Indians and
Alaska Natives. Founded in 1977, through various media--public
television and radio and the Internet--NAPT brings awareness of
Indian and Alaska Native issues. In 2011 NAPT presented seven
Native American documentaries to PBS stations nationwide and
offered producers and educators numerous workshops related to
media maker topics including ``Media for Change: Documentary
Film in Education and Social Issues'' that allowed NAPT to
build learning objects to teach Native American History and fit
all of its curricular materials to the set of core standards.
In addition, NAPT continues to target and work and with
stations to bring new voices into the public broadcasting
system using new media civic engagement technology and support.
NAPT is currently developing curriculum and community
engagement strategies to support CPB's American Graduate
initiative that extends the reach of the Nebraska Educational
Telecommunications' documentary ``Standing Bear's Footsteps''
through a partnership with NBPC's Public Media Corps, Southern
Ponca Tribe of Oklahoma and Northern Ponca Tribe of Nebraska.
--Pacific Islanders in Communications.--Since 1991, PIC has delivered
programs and training that bring voice and visibility to
Pacific Islander Americans. PIC produced the award winning film
``One Voice'' which tells the story of the Kamehameha Schools
Song Contest. Other PBS broadcasts include ``There Once Was an
Island'', about the devastating effects of global warming on
the Pacific Islands and ``Polynesian Power: Islanders in Pro
Football''. Currently PIC is developing a multi-part series,
``Expedition: Wisdom'', in partnership with the National
Geographic Society. PIC offers a wide range of development
opportunities for Pacific Island producers through travel
grants, seminars and media training. Producer training programs
are held in the U.S. territories of Guam and American Samoa, as
well as in Hawai`i, on a regular basis. This year the PIC
series Pacific Heartbeat premieres on American Public
Television.
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 we thank
Congress for support of our work on behalf of our communities.
______

Prepared Statement of the National Marfan Foundation
NMF fiscal year 2013 LHHS appropriations recommendations
$7.8 billion for CDC, an increase of $1.7 billion over fiscal year
2012, including proportional increases for the National Center for
Chronic Disease Prevention and Health Promotion (NCCDPHP) and the
National Center on Birth Defects and Developmental Disabilities
(NCBDDD) to facilitate critical Marfan syndrome and related connective
tissue disorders education and awareness activities.
$32 billion for NIH, an increase of $1.3 billion over fiscal year
2012, including proportional increases for the National Heart, Lung,
and Blood Institute (NHLBI); National Center for Advancing
Translational Sciences (NCATS); National Institute of Arthritis and
Musculoskeletal and Skin Diseases (NIAMS); and other NIH Institutes and
Centers to facilitate adequate growth in the Marfan syndrome and
related connective tissue disorders research portfolios.
Chairman Harkin, Ranking Member Shelby, and distinguished members
of the Subcommittee, thank you for the opportunity to submit testimony
on behalf of NMF. It is my honor to represent the estimated 200,000
Americans who are affected by Marfan syndrome or a related condition
before you.
Marfan syndrome is a genetic disorder of the connective tissue that
can affect many areas of the body, including the heart, eyes, skeleton,
lungs and blood vessels. It is a progressive condition and can cause
deterioration in each of these body systems. The most serious and life-
threatening aspect of the syndrome is a weakening of the aorta. The
aorta is the largest artery carrying oxygenated blood from the heart.
Over time, many Marfan syndrome patients experience a dramatic
weakening of the aorta which can cause the vessel to dissect and tear.
Aortic dissection is a leading killer in the United States, and 20
percent of the people it affects have a genetic predisposition, like
Marfan syndrome, to developing the complication. Early surgical
intervention can prevent a dissection and strengthen the aorta and the
aortic valves, especially when preventive surgery is performed before a
dissection occurs.
The NMF is a nonprofit voluntary health organization founded in
1981. NMF is dedicated to saving lives and improving the quality of
life for individuals and families affected by the Marfan syndrome and
related disorders. The Foundation has three major goals: (1) To provide
accurate and timely information about the Marfan syndrome to affected
individuals, family members, physicians, and other health
professionals; (2) to provide a means for those with Marfan syndrome
and their relatives to share in experiences, to support one another,
and to improve their medical care; and (3) to support and foster
research.
NMF is deeply appreciative of this Subcommittee's historic support
for critical public health programs at CDC and NIH, particularly
programs focused on addressing life-threatening genetic disorders such
as Marfan syndrome. Under your leadership NIH through NHLBI and NIAMS
has been able to expand research in this area and advance our
scientific understanding of the condition. In addition, CDC through
NCCDPHP and NCBDDD has the resources necessary to implement life-saving
awareness and education activities that can prevent thoracic aortic
aneurysms and dissections. We urge you to once again prioritize funding
for public health programs in fiscal year 2013 to ensure that these
activities can continue to improve the quality of life for Americans
affected by Marfan syndrome and related connective tissue disorders.
To follow, please find NMF's fiscal year 2013 appropriations
recommendations for CDC and NIH. Thank you for your time and your
consideration of these recommendations.
Centers for Disease Control and Prevention
NMF joins the other voluntary patient and medical organizations
comprising the public health community in requesting that you support
CDC by providing the agency with an appropriation of $7.8 billion in
fiscal year 2013. Such a funding increase would allow CDC to undertake
critical Marfan syndrome and related connective tissue disorders
education and awareness activities, which would help prevent deadly
thoracic aortic aneurysms and dissections.
In 2010, the American College of Cardiology and the American Heart
Association issued landmark practice guidelines for the treatment of
thoracic aortic aneurysms and dissections. NMF is promoting awareness
of the new guidelines in collaboration with other organizations through
a new Coalition known as ``TAD''; the Thoracic Aortic Disease
Coalition. The TAD Coalition is presently comprised of 10 organizations
that are coordinating efforts to help promote the Guidelines to
healthcare professionals and to raise public awareness of various
aortic diseases and the associated risk factors.
The CDC would be an invaluable partner in the ongoing campaign to
save lives and improve health outcomes by promoting the new Guidelines
to healthcare providers and raising public awareness of risk factors.
In this regard, we ask the Subcommittee encourage CDC to identify
appropriate staff at the NCCDPHP and NCBDDD to participate in TAD
Coalition activities. It is our hope that involving CDC in the
activities of the TAD Coalition will lead to a lasting partnership and
collaboration on critical outreach campaigns.
National Institutes of Health
NMF joins the other voluntary patient and medical organizations
comprising the public health community in requesting that you support
NIH by providing the agency with an appropriation of $32 billion in
fiscal year 2013. This modest 4 percent funding increase would ensure
that biomedical research inflation does not result in a loss of
purchasing power at NIH, critical new initiatives like the Cures
Acceleration Network (CAN) are adequately supported, and the Marfan
syndrome research portfolio can continue to progress.
National Heart, Lung, and Blood Institute.--First and foremost, NMF
applauds NHLBI for its leadership in advancing a landmark clinical
trial on Marfan syndrome. Under the direction of Dr. Lynn Mahoney and
Dr. Gail Pearson, the Institute's Pediatric Heart Network (PHN) has
spearheaded a multicenter study focused on the potential benefits of a
commonly prescribed blood pressure medication (losartan) on aortic
growth in Marfan syndrome patients.
Marfan syndrome patients (age 6 months to 25 years) are now
enrolled in the study. Patients are randomized onto either losartan or
atenolol (a beta blocker that is the current standard of care for
Marfan patients with an enlarged aortic root). We anxiously await the
results of this first-ever clinical trial for our patient population.
It is our hope that losartan will emerge as the new standard-of-care
and greatly reduce the need for surgery in at-risk patients.
NMF is proud to actively support the losartan clinical trial in
partnership with PHN. Throughout the life of the trial we have provided
support for patient travel costs, coverage of select echocardiogram
examinations, and funding for ancillary studies. These ancillary
studies will explore the impact that losartan has on other
manifestations of Marfan syndrome. The Foundation asks for your
continued support to ensure this critical study continues to move
forward.
Secondarily, NMF is grateful for the Subcommittee's previous
recommendations encouraging NHLBI to support research on surgical
options for Marfan syndrome patients.
For the past several years, the NMF has supported an innovative
study looking at outcomes in Marfan syndrome patients who undergo
valve-sparing surgery compared with valve replacement. Initial findings
were published recently in the Journal of Thoracic and Cardiovascular
Surgery. Some short term questions have been answered, most importantly
that valve-sparing can be done safely on Marfan patients by an
experienced surgeon. The consensus among the investigators however is
that long-term durability questions will not be answered until patients
are followed for at least 10 years.
Confirming the utility and durability of valve sparing procedures
will save our patients a host of potential complications associated
with valve replacement surgery. In this regard, we ask that you
encourage NHLBI to consider working with the Genetically Triggered
Thoracic Aortic Aneurysms and Cardiovascular Conditions Registry or
GenTAC to identify ways we can partner moving forward to facilitate
continuation of the aforementioned outcomes study.
Finally, in 2007, NHLBI convened a ``Working Group on Research in
Marfan Syndrome and Related Conditions.'' This panel was comprised of
experts in all aspects of basic and clinical science related to the
disorder. The panel was charged with identifying key recommendations
for advancing the field of research in the coming decade.
In addition to laying out a roadmap for research, the working group
found that, ``Scientific opportunities to advance this field are
conferred by technological advances in gene discovery, the ability to
dissect cellular processes at the molecular level and imaging, and the
establishment of multi-disciplinary teams.'' The barriers to progress
are addressed through the research recommendations, which are also
consistent with goals and challenges identified in the NHLBI Strategic
Plan.
National Center for Advancing Translational Sciences.--The
Foundation applauds the recent establishment of NCATS at NIH. Housing
translational research activities at a single Center at NIH will allow
these programs to achieve new levels of success. Initiatives like CAN
are critical to overhauling the translational research process and
overcoming the research ``valley of death'' that currently plagues
treatment development. In addition, new efforts such as taking the lead
on drug repurposement hold the potential to speed new treatment to
patients, particularly patients who struggle with rare or neglected
conditions. NMF asks that you support NCATS and provide adequate
resources for the Center in fiscal year 2013.
National Institute of Arthritis and Musculoskeletal and Skin
Diseases.--NMF is proud of its longstanding partnership with NIAMS. Dr.
Steven Katz has been a strong proponent of basic research on Marfan
syndrome during his tenure as NIAMS Director and has generously
supported several ``Conferences on Heritable Disorders of Connective
Tissue.'' Moreover, the Institute has provided invaluable support for
the program project entitled, ``Consortium for Translational Research
in Marfan Syndrome,'' which has enhanced our understanding of the
disorder and increased the ability to stop the disease progression
using a drug-based therapy. The discoveries of fibrillin-1, TGF-beta,
and their role in muscle regeneration and connective tissue function
were made possible in part through collaboration with NIAMS.
As the losartan trial continues to move forward, we hope to expand
our partnership with NIAMS to support related studies that fall under
the mission and jurisdiction of the Institute. One of the areas of
great interest to researchers and patients is the role that losartan
may play in strengthening muscle tissue in Marfan patients. NMF would
welcome an opportunity to partner with NIAMS on this and other
research. In this regard, we ask that you encourage NIAMS to expand its
support for research aimed at identifying effective therapies for
heritable connective tissue disorders to reduce the number of premature
deaths from these chronic and complex conditions.
Thank you again for your time and your consideration of our fiscal
year 2013 appropriations requests. Please contact me if you have any
questions or if you would like any additional information.
______

Prepared Statement of the National Multiple Sclerosis Society
Mr. Chairman and members of the subcommittee, thank you for this
opportunity to provide testimony regarding funding of critically
important Federal programs that impact those affected by multiple
sclerosis. Multiple sclerosis (MS) is an unpredictable, often disabling
disease of the central nervous system that interrupts the flow of
information within the brain, and between the brain and body. Symptoms
range from numbness and tingling to blindness and paralysis. The
progress, severity, and specific symptoms of MS in any one person
cannot yet be predicted, but advances in research and treatment are
moving us closer to a world free of MS. Most people with MS are
diagnosed between the ages of 20 and 50, with at least two to three
times more women than men being diagnosed with the disease. MS affects
more than 400,000 people in the United States.
MS stops people from moving. The National MS Society exists to make
sure it doesn't. The National MS Society sees itself as a partner to
the Government in many critical areas. As we advocate for NIH research,
we do so as an organization that funds approximately $40 million
annually in MS research through funds generated through the Society's
fundraising efforts. And as we advocate for lifespan respite funding,
we do so as an organization that works to provide some level of respite
relief for caregivers. So while we're here to advocate for Federal
funding, we do it as an organization that commits tens of millions of
dollars each year to similar or complementary efforts as those being
funded by the Federal Government. Through these efforts, our goal is to
see a day when MS has been stopped, lost functions restored, and a cure
is at hand.
The National MS Society recommends the following funding levels for
agencies and programs that are of vital importance for the lives of
Americans living with MS.
lifespan respite care program
Many caregivers are family members who provide care full time
because of the needs of the patient. As you can imagine, the caregivers
get worn out and need a break once in a while. That's why respite care
services are so important--to provide caregivers with a chance to have
a break and get refreshed. These services are a critical part of
ensuring quality home-based care for people living with MS. Because of
the importance of these services, the National MS Society requests the
inclusion of $5 million in the fiscal year 2013 Labor-HHS-Education
appropriations bill to fund lifespan respite programs. The Lifespan
Respite Care Program, enacted in 2006, provides competitive grants to
States to establish or enhance statewide lifespan respite programs,
improve coordination, and improve respite access and quality. States
provide planned and emergency respite services, train and recruit
workers and volunteers, and assist caregivers in gaining access to
services. Perhaps the most critical aspect of the program for people
living with MS is that lifespan respite serves families regardless of
special need or age--literally across the lifespan. Much existing
respite care has age eligibility requirements and since MS is typically
diagnosed between the ages of 20 and 50, lifespan respite programs are
often the only open door to needed respite services.
Up to one-quarter of individuals living with MS require long-term
care services at some point during the course of the disease. Often, a
family member steps into the role of primary caregiver to be closer to
the individual with MS and to be involved in care decisions. According
to a 2011 AARP report, 61.6 million family caregivers provided care at
some point during 2009 and the value of their uncompensated services
was approximately $450 billion per year--more than total Medicaid
spending and almost as high as Medicare spending. Family caregiving,
while essential, can be draining and stressful, with caregivers often
reporting difficulty managing emotional and physical stress, finding
time for themselves, and balancing work and family responsibilities.
The impact is so great, in fact, that American businesses lose an
estimated $17.1 to $33.36 billion each year due to lost productivity
costs related to caregiving responsibilities. Providing $5 million for
Lifespan Respite in fiscal year 2013 would improve access to respite
services, allowing family caregivers to take a break from the daily
routine and stress of providing care, improve overall family health,
and help alleviate the monstrous financial impact caregiver strain
currently has on American businesses.
national institutes of health
We urge Congress to continue its investment in innovative medical
research that can help prevent, treat, and cure diseases such as MS by
providing at least $32 billion for the National Institutes of Health
(NIH) in fiscal year 2013.
The NIH is the country's premier institution for medical research
and the single largest source of biomedical research funding in the
world. The NIH conducts and sponsors a majority of the MS-related
research carried out in the United States. Approximately $122 million
of fiscal year 2011 and American Recovery and Reinvestment Act
appropriations were directed to MS-related research. An invaluable
partner, the NIH has helped make significant progress in understanding
MS. NIH scientists were among the first to report the value of MRI in
detecting early signs of MS, before symptoms even develop. Advancements
in MRI technology allow doctors to monitor the progression of the
disease and the impact of treatment.
Research during the past decade has enhanced knowledge about how
the immune system works, and major gains have been made in recognizing
and defining the role of this system in the development of MS lesions.
These NIH discoveries are helping find the cause, alter the immune
response, and develop new MS therapies that are now available to modify
the disease course, treat exacerbations, and manage symptoms. Twenty
years ago there were no MS therapies or medications. Now there are
eight, with the first oral medication now available and other new
treatments in the pipeline. The NIH provided the basic research
necessary so that these therapies could be developed. Had there been no
Federal investment in research, it's doubtful people living with MS
would have any therapies available. The NIH also directly supports jobs
in all 50 States and 17 of the 30 fastest growing occupations in the
United States are related to medical research or healthcare. More than
83 percent of the NIH's funding is awarded through almost 50,000
competitive grants to more than 325,000 researchers at over 3,000
universities, medical schools, and other research institutions in every
State.
To continue the forward momentum in the ability to aggressively
combat, treat, and one day cure diseases like MS, the National MS
Society requests that Congress provide at least $32 billion for the NIH
in fiscal year 2013.
centers for medicare & medicaid services
Medicaid
The National MS Society urges Congress to maintain funding for
Medicaid and reject proposals to cap or block grant the program.
Medicaid provides comprehensive health coverage to over 8 million
persons living with disabilities and 6 million persons with
disabilities who rely on Medicaid to fill Medicare's gaps.
Approximately 10 percent of people living with MS rely on Medicaid.
Capping or block-granting Medicaid will merely shift costs to
States, forcing States to shoulder a seemingly insurmountable financial
burden or cut services on which our most vulnerable rely. Capping and
block-granting could result in many more individuals becoming
uninsured, compounding the current problems of lack of coverage, over
flowing emergency rooms, limited access to long-term services, and
increased healthcare costs in an overburdened system. By capping funds
that support home- and community-based care, such proposals would also
likely lead to an increased reliance on costlier institutional care
that contradicts the principles laid forth in the 1999 U.S. Supreme
Court decision Olmstead and integrating and keeping people with
disabilities in their communities.
While the economic situation demands leadership and thoughtful
action, the National MS Society urges Congress to remember people with
MS and all disabilities, their complex health needs, and the important
strides Medicaid has made for persons living with disabilities
particularly in the area of community-based care and not modify the
program to their detriment.
social security administration
The National MS Society urges Congress to provide $13.4 billion for
the Social Security Administration's (SSA) Limitations on
Administrative (LAE) Expenses to fund SSA's day-to-day operational
responsibilities and make key investments in addressing increasing
disability and retirement workloads, in program integrity, and in SSA's
Information Technology (IT) infrastructure.
Because of the unpredictable nature and sometimes serious
impairment caused by the disease, SSA recognizes MS as a chronic
illness or ``impairment'' that can cause disability severe enough to
prevent an individual from working. During such periods, people living
with MS are entitled to and rely on Social Security Disability
Insurance (SSDI) or Supplemental Security Income (SSI) benefits to
survive. People living with MS, along with millions of others with
disabilities, depend on SSA to promptly and fairly adjudicate their
applications for disability benefits and to handle many other actions
critical to their well-being including: timely payment of their monthly
benefits; accurate withholding of Medicare Parts B and D premiums; and
timely determinations on post-entitlement issues, e.g., overpayments,
income issues, prompt recording of earnings.
The wave of increased disability claims--in part due to the
distressed economy--continues to have a very significant impact on the
Disability Determination Services (DDSs). In the 35-month period ending
in August 2011, the number of claims pending for a disability medical
decision rose from 556,670 to 755,058--an increase of 36 percent. SSA
faces an unprecedented backlog of disability hearings. In fiscal year
2011, 859,514 hearings were filed, which is 270,065 (45.8 percent) more
than in fiscal year 2008. Despite these challenges, eliminating the
disability hearings backlog remains SSA's top priority and processing
time has been reduced from 491 days in fiscal year 2009 to 340 days in
October 2011. If SSA does not receive adequate funding for fiscal year
2013 this progress will regress. The reduced SSA funding level in
fiscal year 2011 for example resulted in the suspension of opening
eight planned hearing offices, which diminishes SSA's ability to
eliminate the backlog by fiscal year 2013. To support continued
progress to eliminate the backlog and to help ensure that persons with
disabilities relying on SSDI or SSI receive entitled benefits in a
timely manner, the National MS Society urges Congress to provide $13.4
billion for the SSA's LAE in fiscal year 2013.
food and drug administration
The FDA is the United States' pre-eminent public health agency and
its role as the regulator of the country's pharmaceutical industry
provides invaluable support and encourages vital progress for people
living with MS and other diseases. In its capacity as the industry's
regulator, the FDA ensures that drugs and medical devices are safe and
effective for public use and provides consumers with confidence in new
technologies. Because of the tremendous impact the FDA has on the
development and availability of drugs and devices for individuals with
disabilities, the NMSS requests that Congress provide a 6 percent
increase over the fiscal year 2012 budget.
Advancements in medical technology and medical breakthroughs play a
pivotal role in decreasing the societal costs of disease and
disability. The FDA is responsible for approving drugs for the market
and in this capacity has the ability to keep healthcare costs down.
Each $1 invested in the life-science research regulated by the FDA has
the potential to save upwards of $10 in health gains. Breakthroughs in
medications and devices can reduce the potential costs of disease and
disability in Medicare and Medicaid and can help support the healthier,
more productive lives of people living with chronic diseases and
disabilities, like MS. The approval of low-cost generic drugs saved the
healthcare system $140 billion in 2010 and nearly $1 trillion over the
past decade. However, recent funding constraints have resulted in a 2
year backlog of generic drug approval applications and could
potentially cost the Federal Government and patients billions of
dollars in the coming years. The potential for these cost-saving
medical breakthroughs and overall healthcare savings relies on a
vibrant industry and an adequately funded FDA. Entire industries are
working to enhance the lives of Americans with new medical devices and
pharmaceuticals with tens of billions of dollars being spent annually
by the NIH and industry in pursuit of new breakthroughs. The FDA has a
comparatively small budget yet is charged with ensuring the safety and
efficacy of these new products. The answer to the backlog is to provide
adequate funding to FDA, not, as some have suggested, to lessen the
rigorous protocols in place to ensure safety. Therefore, the National
MS Society urges Congress to provide the FDA with a 6 percent increase
to address this backlog.
conclusion
The National MS Society thanks the subcommittee for the opportunity
to provide written testimony and our recommendations for fiscal year
2013 appropriations. The agencies and programs we have discussed are of
vital importance to people living with MS and we look forward to
continuing to working with the subcommittee to help move us closer to a
world free of MS. Please don't hesitate to contact me with any
question.
______

Prepared Statement of the Neurofibromatosis Network
Thank you for the opportunity to submit testimony to the
Subcommittee on the importance of continued funding at the National
Institutes of Health (NIH) for research on Neurofibromatosis (NF), a
genetic disorder closely linked too many common diseases widespread
among the American population.
On behalf of the Neurofibromatosis (NF) Network, a national
coalition of NF advocacy groups, I speak on behalf of the 100,000
Americans who suffer from NF as well as approximately 175 million
Americans who suffer from diseases and conditions linked to NF such as
cancer, brain tumors, heart disease, memory loss, and learning
disabilities. Thanks in large measure to this Subcommittee's strong
support, scientists have made enormous progress since the discovery of
the NF1 gene in 1990 resulting in clinical trials now being undertaken
at NIH with broad implications for the general population.
NF is a genetic disorder involving the uncontrolled growth of
tumors along the nervous system which can result in terrible
disfigurement, deformity, deafness, blindness, brain tumors, cancer,
and even death. In addition, approximately one-half of children with NF
suffer from learning disabilities. NF is the most common neurological
disorder caused by a single gene and three times more common than
Muscular Dystrophy and Cystic Fibrosis combined. There are three types
of NF: NF1, which is more common, NF2, which primarily involves tumors
causing deafness and balance problems, and schwannomatosis, the
hallmark of which is severe pain.
While not all NF patients suffer from the most severe symptoms, all
NF patients and their families live with the uncertainty of not knowing
whether they will be seriously affected because NF is a highly variable
and progressive disease.
Researchers have determined that NF is closely linked to cancer,
heart disease, learning disabilities, memory loss, brain tumors, and
other disorders including deafness, blindness and orthopedic disorders,
primarily because NF regulates important pathways common to these
disorders such as the RAS, cAMP and PAK pathways. Research on NF
therefore stands to benefit millions of Americans:
Cancer.--NF is closely linked to many of the most common forms of
human cancer, affecting approximately 65 million Americans. In fact, NF
shares these pathways with 70 percent of human cancers. Research has
demonstrated that NF's tumor suppressor protein, neurofibromin,
inhibits RAS, one of the major malignancy causing growth proteins
involved in 30 percent of all cancer. Accordingly, advances in NF
research may well lead to treatments and cures not only for NF
patients, but for all those who suffer from cancer and tumor-related
disorders. Similar studies have also linked epidermal growth factor
receptor (EGF-R) to malignant peripheral nerve sheath tumors (MPNSTs),
a form of cancer which disproportionately strikes NF patients.
Heart disease.--Researchers have demonstrated that mice completely
lacking in NF1 have congenital heart disease that involves the
endocardial cushions which form in the valves of the heart. This is
because the same ras involved in cancer also causes heart valves to
close. Neurofibromin, the protein produced by a normal NF1 gene,
suppresses ras, thus opening up the heart valve. Promising new research
has also connected NF1 to cells lining the blood vessels of the heart,
with implications for other vascular disorders including hypertension,
which affects approximately 50 million Americans. Researchers believe
that further understanding of how an NF1 deficiency leads to heart
disease may help to unravel molecular pathways involved in genetic and
environmental causes of heart disease.
Learning disabilities.--Learning disabilities are the most common
neurological complication in children with NF1. Research aimed at
rescuing learning deficits in children with NF could open the door to
treatments affecting 35 million Americans and 5 percent of the world's
population who also suffer from learning disabilities. In NF1 the
neurocognitive disabilities range includes behavior, memory and
planning. Recent research has shown there are clear molecular links
between autism spectrum disorder and NF1; as well as with many other
cognitive disabilities. Tremendous research advances have recently led
to the first clinical trials of drugs in children with NF1 learning
disabilities. These trials are showing promise. In addition because of
the connection with other types of cognitive disorders such as autism,
researchers and clinicians are actively collaborating on research and
clinical studies, pooling knowledge and resources. It is anticipated
that what we learn from these studies could have an enormous impact on
the significant American population living with learning difficulties
and could potentially save Federal, State, and local governments, as
well as school districts, billions of dollars annually in special
education costs resulting from a treatment for learning disabilities.
Memory loss.--Researchers have also determined that NF is closely
linked to memory loss and are now investigating conducting clinical
trials with drugs that may not only cure NF's cognitive disorders but
also result in treating memory loss as well with enormous implications
for patients who suffer from Alzheimer's disease and other dementias.
Deafness.--NF2 accounts for approximately 5 percent of genetic
forms of deafness. It is also related to other types of tumors,
including schwannomas and meningiomas, as well as being a major cause
of balance problems.
The enormous promise of NF research, and its potential to benefit
over 175 million Americans who suffer from diseases and conditions
linked to NF, has gained increased recognition from Congress and the
NIH. This is evidenced by the fact that 11 institutes are currently
supporting NF research, and NIH's total NF research portfolio has
increased from $3 million in fiscal year 1990 to an estimated $24
million in fiscal year 2012. Given the potential offered by NF research
for progress against a range of diseases, we are hopeful that the NIH
will continue to build on the successes of this program by funding this
promising research and thereby continuing the enormous return on the
taxpayers' investment.
We respectfully request that you include the following report
language on NF research at the National Institutes of Health within
your fiscal year 2013 Labor, Health and Human Services, Education
appropriations bill.

``Neurofibromatosis [NF].--The Committee supports efforts to
increase funding and resources for NF research and treatment at
multiple NIH Institutes. NF affected children and adults are at
significant risk for the development of many forms of cancer; the
Committee encourages NCI to increase its NF research portfolio in
fundamental basic science, translational research and clinical trials
focused on NF. The Committee also encourages the NCI to support NF
centers, NF clinical trials consortia, NF preclinical mouse models
consortia, and biospecimen repositories. The Committee urges NHLBI to
expand its investment in NF based on the increased prevalence of
hypertension and congenital heart disease in this patient population.
Because NF causes brain and nerve tumors and is associated with
cognitive and behavioral problems, the Committee urges NINDS to
continue to aggressively fund fundamental basic science research on NF
relevant to nerve damage and repair, learning disabilities and
attention deficit disorders. In addition, the Committee encourages the
NICHD and NIMH to expand funding of basic and clinical NF research in
the area of learning and behavioral disabilities. Children with NF1 are
prone to the development of severe bone deformities, including
scoliosis; the Committee therefore encourages NIAMS to expand its NF1
research portfolio. Since NF2 accounts for approximately 5 percent of
genetic forms of deafness, the Committee encourages NIDCD to expand its
investment in NF2 basic and clinical research. Based on the increased
incidence of optic gliomas, vision loss, cataracts, and retinal
abnormalities in NF, the Committee urges the NEI to expand its NF
research portfolio. Finally, the Committee encourages NHGRI to increase
its investment in NF, given that NF represents a tractable model system
to study the genomics of cancer predisposition, learning and behavior
problems, and bone abnormalities translatable to individualized
medicine.''

We appreciate the Subcommittee's strong support for NF research and
will continue to work with you to ensure that opportunities for major
advances in NF research are aggressively pursued. Thank you.
______

Prepared Statement of the National Nursing Centers Consortium
The National Nursing Centers Consortium (NNCC) is a 501(c)(3)
member organization of nonprofit, nurse-managed health clinics,
sometimes called nurse-managed health centers or NMHCs. The Affordable
Care Act defines the term ``nurse-managed health clinic'' as a nurse
practice arrangement, managed by advanced practice nurses, that
provides primary care or wellness services to underserved or vulnerable
populations and that is associated with a school, college, university
or department of nursing, federally qualified health center (FQHC), or
independent nonprofit health or social services agency. Currently there
are about 200 NMHCs in operation throughout the United States. Title
III of the Public Health Service Act established the Nurse Managed
Health Clinic Grant Program to provide NMHCs with a stable source of
Federal funding that would place them on footing similar to other
safety-net providers. Although authorized, to date the Grant Program
has received no appropriations.
The Value of NMHCs: Interdisciplinary Training in an Academic Setting
Many of the Nation's leading nursing schools operate NMHCs. Since
the clinics are affiliated with academic institutions, they naturally
become workforce development sites and can provide clinical training
opportunities for health profession students. In addition to training
registered nurses and advance practice registered nurses (mostly nurse
practitioners), many NMHCs have interdisciplinary partnerships with
other academic programs allowing them to also provide learning
opportunities for medical, pharmacy, dental, social work, public
health, and other health profession students. NMHCs easily blend
community healthcare with healthcare provider training and development.
In October 2010, HRSA released $14.8 million in Prevention and
Public Health Fund dollars to fund 10 NMHC grants. Since receiving
funding, the NMHC grantees have provided interdisciplinary clinical
training to over 800 students of nursing, medicine, public health, and
other health professions. In May 2009, the NNCC conducted a survey of
its members to measure their contribution to health professions
education in the United States. Forty-four NMHCs in a mix of urban,
rural, and suburban communities reported providing educational
opportunities for nearly 3,100 students annually. The contribution by
these clinics to the healthcare workforce is undeniable.
The Value of NMHCs: Expanding Access to Care at a Lower Cost
NMHCs act as essential safety-net providers in rural, urban, and
suburban communities across the country. For many patients in medically
underserved areas, NMHCs and nurse practitioners are the only primary
care providers in the area. These critical access points provide care
to patients regardless of ability to pay and insurance status and keep
patients out of the emergency room, saving the healthcare system
millions of dollars annually. NMHCs also improve access by helping to
build the capacity of the Nation's primary care workforce. As the
number of medical students going into primary care continues to stay at
an alarmingly low rate, the United States is in serious need of quickly
and well-trained primary care providers. By training nurse
practitioners as community-based primary care providers, NMHCs are
perfectly positioned to increase the number of providers while
simultaneously providing needed primary care.
By the end of 2011, the NMHC grantees that received Federal funding
in October 2010 had served 27,000 patients and recorded over 72,000
patient encounters. Additionally, the grantees are providing care in
communities with unprecedented need. For instance, one of the grantees
provides care to residents of Galveston, Texas, a community still
recovering from a devastating natural disaster. All this indicates that
any Federal funds provided to NMHCs will go to provide quality primary
care in very needy communities.
Finally, having nurse practitioners provide primary care in NMHCs
is cost-effective, which is critical in this time of fiscal
uncertainty. In 1981, the Office of Technology Assessment first
demonstrated that nurse practitioners perform comparable medical care
tasks at a lower total cost than physicians.\1\ Many studies have since
reaffirmed that nurse practitioners provide high quality care for a
lower overall cost.\2\
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\1\ LeRoy, L. & Solowitz, S. (1981). The Costs and Effectiveness of
Nurse Practitioners. Office of Technology Assessment.
\2\ Coddington J. (2010). Quality of Care and Policy Barriers to
Providing Health Care at a Pediatric Nurse-Managed Clinic. Journal of
Pediatric Healthcare, 24 (5):e9; Eibner, E et al. (2009). Controlling
Health Care Spending in Massachusetts: An Analysis of Options. RAND
Health; Mehrota, A. et al. (2009). Comparing Costs and Quality of Care
at Retail Clinics with that of Other Medical Settings for 3 Common
Illnesses. Annals of Internal Medicine, 151, 321-323; Chenoweth, D. et
al. (2008). Nurse Practitioner Services: Three-Year Impact on Health
Care Costs. Journal of Occupational and Environmental Medicine, 50,
1293-1298.
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The Challenge in Sustaining NMHCs
The patient population and payor mix of NMHCs is similar to that of
federally Qualified Health Centers. However, because many NMHCs are
directly affiliated with academic schools of nursing, they cannot meet
the governance requirements for Community Health Center funding.
Without a stable source of funding to offset the cost of caring for the
uninsured, several NMHCs have had to close, leaving many vulnerable
patients without care.
Request
Because NMHCs are vital interdisciplinary training sites, help fill
the gap in the primary care provider shortage by training primary care
providers, and provide quality, affordable care to the most vulnerable
people in their communities, the NNCC respectfully requests $20 million
in fiscal year 2013 for the Nurse-Managed Health Clinic Grant Program,
as authorized under Title III of the Public Health Service Act.
______

Prepared Statement of the National Postdoctoral Association
Mr. Chairman and Members of the Subcommittee: Thank you for this
opportunity to testify in regard to the fiscal year 2013 funding for
the National Institutes of Health (NIH). We are writing today in regard
to support for postdoctoral researchers, specifically in support of
fiscal year 2013 funding for the National Institutes of Health at the
2012 level of $30.86 billion and in support of the 2 percent increase
in the Ruth L. Kirschstein National Research Service Award (NRSA)
training stipends for postdoctoral researchers, as requested in the
President's proposed fiscal year 2013 budget.
Background: Postdocs are the Backbone of U.S. Science and Technology
According to estimates by the National Science Foundation (NSF)
Division of Science Resource Statistics, there are approximately 89,000
postdoctoral scholars in the United States \1\. The NIH and the NSF
define a ``postdoc'' as: An individual who has received a doctoral
degree (or equivalent) and is engaged in a temporary and defined period
of mentored advanced training to enhance the professional skills and
research independence needed to pursue his or her chosen career path.
The number of postdocs has been steadily increasing. The incidence of
individuals taking postdoc positions during their careers has risen,
from about 31 percent of those with a pre-1972 doctorate to 46 percent
of those receiving their doctorate in 2002-05 \2\. According to the
2012 Science and Engineering Indicators, an increase in those taking
postdoc positions is evident across most disciplines:

\1\ National Science Foundation Division of Science Resource
Statistics. (January 2010, chapter 3, pp.44-46). Science and
engineering indicators 2010. Arlington, Virginia: National Science
Board.
\2\ National Science Foundation National Center for Science and
Engineering Statistics (NCSES). (January 2012, chapter 3, p. 39).
Science and engineering indicators 2012. Arlington, Virginia: National
Science Board.
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``In traditionally high-postdoc fields such as the life sciences
(from 46 percent to 60 percent) and the physical sciences (from 41
percent to 61 percent), most doctorate recipients now have a postdoc
position as part of their career path. Similar increases were found in
mathematical and computer sciences (19 percent to 31 percent), social
sciences (18 percent to 30 percent), and engineering (14 percent to 38
percent). Recent engineering doctorate recipients are now almost as
likely to take a postdoc position as physical sciences doctorate
holders were 35 years ago.'' \3\

\3\ Ibid.
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Postdocs are critical to the research enterprise in the United
States and are responsible for the bulk of the cutting edge research
performed in this country. Consider the following:
--According to the National Academy of Science (NAS), postdoctoral
researchers ``have become indispensable to the science and
engineering enterprise, performing a substantial portion of the
Nation's research in every setting.'' \4\
---------------------------------------------------------------------------
\4\ COSEPUP. (June 2001, p. 10). Enhancing the postdoctoral
experience for scientists and engineers. Washington, DC: National
Academy Press.
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--The retention of women and under-represented groups in biomedical
research depends upon their successful and appropriate
completion of the postdoctoral experience.
--Postdoctoral scholars carry the potential to solve many of the
world's most pressing scientific and health problems; they are
the principal investigators of tomorrow.
Unfortunately, postdocs are routinely exploited. They are paid a
low wage relative to their years of training and receive varying
benefits depending on the institution where they work. The National
Postdoctoral Association (NPA) advocates for policies that support and
enhance postdoctoral training on the national level and also within the
research institutions that host postdoctoral scholars. Low compensation
remains one of the most serious issues faced by the postdoctoral
community.
Problem: NRSA Stipends are Low and Don't Meet Cost-of-Living Standards;
For Better or Worse, Postdoc Compensation is Based on NRSA
Stipends
The NIH leadership has been aware that the NRSA training stipends
are too low since 2001, after the publication of the results of the NAS
study, Addressing the Nation's Changing Needs for Biomedical and
Behavioral Scientists. In response, the NIH pledged (1) to increase
entry-level stipends to $45,000 by raising the stipends at least 10
percent each year and (2) to provide automatic cost-of-living increases
each year thereafter to keep pace with inflation. Most recently, the
2011 NAS study, Research Training in the Biomedical, Behavioral, and
Clinical Research Sciences, called for, among other recommendations,
increased funding to support more NRSA positions and to fulfill the
NIH's 2001 commitment to increase pre-doctoral and postdoctoral
stipends.
Without sufficient appropriations from Congress, the NIH has not
been able to fulfill its pledge. In 2007, the stipends were frozen at
2006 levels and since then have not been significantly increased. The
stipends were increased by 1 percent each year in 2009 and 2010 and by
2 percent in 2011 and 2012. The 2012 entry-level training stipend
remains low, at $39,264, the equivalent of a GS-8 position, step 2 in
the Federal Government in 2012 \5\, despite the postdocs' advanced
degrees and specialized technical skills and experience. Furthermore,
this stipend remains far short of the promised $45,000. Please see
Figure 1 for a summary of the stipend amounts since 2000 and Figure 2
for a comparison of the actual stipend growth with the NIH recommended
growth.
---------------------------------------------------------------------------
\5\ U.S. Office of Personnel Management Salary Tables 2012. http://
www.opm.gov/oca/12tables/html/gs.asp.

\6\ Figure created by Lorraine Tracey, Ph.D., on behalf of the
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National Postdoctoral Association.

It is not only the NRSA fellows who remain undercompensated; the
impact of the low stipends extends beyond the NRSA-supported postdocs.
The NPA's research has strongly suggested that the NIH training
stipends are used as a benchmark by research institutions across the
country for establishing compensation for postdoctoral scholars.\7\
Thus, an unintended consequence is that institutions undercompensate
all of their postdocs, who must then struggle to make ends meet, which
in turn affects their productivity and undermines their efforts to
solve the world's most critical problems. Additionally, the NPA is
hearing from many postdocs, who say they are leaving their research
careers behind because of the low compensation. In order to keep the
``best and the brightest'' scientists in the U.S. research enterprise,
the NPA believes that it is crucial that Congress appropriate funding
for the 2-percent increase in training stipends, as a moderate yet
substantial step toward reaching the recommended entry-level stipend of
$45,000.
---------------------------------------------------------------------------
\7\ Johnson Phillips, C. (April 2012). National Postdoctoral
Association Institutional Survey on Postdoctoral Compensation,
Benefits, and Professional Development Opportunities: Highlights.
Washington, DC: National Postdoctoral Association.
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Solution: Keep the NIH's Original Promise to Raise the Minimum Stipends
We respectfully request that the Subcommittee appropriate funding
of $30.86 billion for the fiscal year 2013 NIH budget, which would in
turn allow the NIH to appropriate $775 million to training grants and
implement a 2 percent NRSA stipend increase, as per the President's
proposed fiscal year 2013 budget:
--Support for the training mechanism would decline by 0.4 percent
compared to fiscal year 2012. This reflects a 1.8 percent
reduction in the number of trainees supported. Stipend rates,
however, would increase at the same pace as for fiscal year
2012 at 2 percent, continuing a long-term strategy that NIH has
used to try and keep stipend levels closer to salaries that
could be earned in related occupations, to ensure that
outstanding individuals continue to pursue biomedical research
careers.'' \8\
---------------------------------------------------------------------------
\8\ Department of Health and Human Services National Institutes of
Health. (pp. ES25-ES26). NIH Congressional Justification: Overview.
http://officeofbudget.od.nih.gov/pdfs/FY13/FY2013_Overview.pdf.
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The NPA believes it is just and necessary to increase the
compensation provided to these new scientists, who make significant
contributions to the bulk of the research discovering cures for disease
and developing new technologies to improve the quality of life for
millions of people in the United States. Please do not hesitate to
contact us for more information.
Thank you for your consideration.
______

Prepared Statement of National Public Radio
Dear Chairman Harkin, Senator Shelby and Members of the
Subcommittee: Thank you for this opportunity to urge the Subcommittee's
support for a Federal investment in America's distinctive public
broadcasting system. Public broadcasting's continuing service to
communities in every corner of America is dependent on a diversified
revenue base, including Federal funding. For less money per American
per year than a single cup of coffee, public broadcasting stations have
become local community cornerstones that reflect local values and are
built upon local control and local programming decisions. And this
outstanding locally focused public service is widely supported by
Americans from all walks of life.
As the President and CEO of NPR, I offer this testimony on behalf
of the public radio system, a uniquely American public service, not-
for-profit media enterprise that includes NPR, our more than 950 public
radio station partners, other producers and distributors of public
radio programming including American Public Media (APM), Public Radio
International (PRI), the Public Radio Exchange (PRX), and many
stations, both large and small, that create and distribute content
through the Public Radio Satellite System (PRSS). With your continued
support for an annual Federal appropriation of $445 million to the
Corporation for Public Broadcasting (CPB), every American will continue
to have free access to the best in educational, news, information and
cultural programming.
Funding provided by Congress to the CPB supports the entire
foundation of a system that has been one of America's most successful
models of a community-centric grant program. The revenue base provided
by Congress enables stations to raise $6 for every Federal grant
dollar. And for every $1 that public radio stations invest in NPR
programming, they are able to raise $3 locally from audiences and local
businesses. This enables local stations to invest more deeply in their
own local news and cultural programming. The essential Federal
investment enables the American public to receive an enduring and daily
return on investment that is heard, seen, read and experienced in
public radio broadcasts, apps, podcasts, and on online.
Public Radio: It's All Local
Local is the cornerstone and watchword of public radio as stations
connect with their communities and localize civil and civic discussions
on reporting from across the street and around the world. Public radio
stations are independently owned and operated, and are licensed to
colleges, universities, community foundations, and other nonprofit
organizations. Stations serve their local communities by determining
their own schedules. They are managed locally by professionals who are
accountable to community leaders and listeners who represent the
diverse backgrounds of that community. Decisions about programming and
services are made by people who live within the local community. That's
the way it used to be throughout much of the broadcast industry, and we
think it's the way it should be. Public radio stations set their own
policies, make their own program decisions, and answer questions when
their local listeners call or write. They respond to their listeners
and respond to their needs because an actively engaged audience is
public radio's calling card. Most of our system's revenue is audience-
sensitive, coming either from individual local contributors or from
local businesses and foundations that support the work of our stations.
Consider these recent statistics . . . Roughly 38 million Americans
listen to public radio each week, more than the total combined
circulation of the country's top 64 newspapers, including USA Today,
The Wall Street Journal, and the New York Times. Additionally, some 20
million visitors a month find public radio's digital platforms, with
some 30 million podcast downloads occurring each month. According to
the Pew Research Center, NPR and public radio are the only news sources
to see a meaningful increase in audience trust over the last 12 years.
As the country's largest nonprofit news organization, public radio
is uniquely positioned to respond to the ever evolving nature of
delivering news, music and cultural affairs programming. Our network of
local public radio stations reaches diverse communities, from the
largest urban areas to the smallest rural enclaves. Public radio
programming is rooted in the fundamentals of accuracy, transparency,
independence, balance, and fairness that foster understanding for
millions of Americans seeking information, context and insight.
As a network of stations that produce local news and cultural
programming and, with regional, national and international reporting
capabilities that NPR, APM and others contribute, we are making a
difference in the world beginning in each community you represent. On
average, 44 percent of daily programming is locally produced by station
staff, 28 percent is produced by NPR, and 28 percent comes from other
public radio station producers and national distributors. Throughout
the public radio station community, local and regional talk shows are
mainstays of daily programming. Recent surveys show that the number of
public radio stations carrying local news/talk programming rose from
595 to 681 stations, with hours aired each week increasing by more than
10 percent. On average, 1,400 programming segments produced by local
public radio stations were included in programming distributed
nationally by NPR.
Roughly 90 percent of stations produce local newscasts, airing both
newscast and non-newscast content primarily in weekday drive time,
especially morning drive-time. About half of all stations carry local
news content during the weekends. Most stations--74 percent--are
producing stories other than newscasts each week to insert into
``Morning Edition'' and ``All Things Considered'' locally; and, most
news stations--88 percent--are producing and inserting stories, with a
majority of these stations inserting five or more stories per week.
Stations devote the most local news coverage and their reporters'
specific beat assignments to State-local-politics, schools and
education, arts and cultural events, and environmental, health, and
business issues. News format stations provide added coverage on local
politics, education, and business, whereas music stations focus on arts
and cultural affairs events.
Public Radio: Music and Culture in Communities
Public radio also provides an important and growing contribution to
America's music culture and America's music economy. Some 480 public
radio stations offer a mixed news and music programming format, with
another 180 stations engaged entirely in music. Every year, public
radio stations host and broadcast more than 3,000 in-studio and
community-based performances. And every year, public radio stations
broadcast more than 4.8 million hours of music programming. More than a
third of all public-radio listening is to music.
Classical, jazz, folk, independent, bluegrass, world and eclectic
are music formats offered by public radio stations in cities large and
small, and all are being eliminated as economically unsustainable in
the commercial market. As a result, in dozens of communities
nationwide, the local public radio station is the only free and
universally available source of music from these genres. This
preservation role is complemented by the important promotional role
public radio stations play in music today. Local stations actively
highlight in-studio performances by emerging artists and local music
events spanning all music genres. Audiences increasingly are turning to
their local public radio stations as trusted sources for information on
new artists and events.
Public Radio: Information in Times of Crisis and Emergency
By ensuring that public radio is widely available throughout the
country, Federal funding helps ensure that citizens have access to
emergency and public safety information during national or local
disasters. Public radio is a communications lifeline during times of
emergencies, especially when the power grid is down. 98 percent of the
U.S. population has access to a public radio signal. There are an
estimated 800-900 million radios in the United States and more than 38
million people listen to public radio each week. Radio is the most
effective medium for informing a community of weather forecasts,
traffic issues, services available, evacuations, and other emergency
conditions. Everyone has access to a radio; they are portable and
battery operated. In Indian Country, radio stations provide essential
life saving information in many Native communities that do not have
available or effective 9-1-1 services and have limited or no telephone
access or broadband (one-third have no telephone and less than 10
percent have Internet access).
The Federal Emergency Management Agency (FEMA) routinely advises
the public to make sure that radios with batteries are on hand when
major storms approach. When people are instructed to evacuate due to
local crisis situations such as hurricanes, flooding, tornados,
wildfires, ice storms, earthquakes and terrorist attacks, car radios
become a primary instrument for receiving information about the
emergency situation including evacuation routes and evacuation center
locations. Effective emergency warnings allow people to take actions
that save lives, reduce damage, and reduce human suffering.
Dedicated public radio personnel have worked and continued
broadcasting through multiple crises such as the 9/11 attacks,
Hurricanes Andrew, Hannah, Katrina, Rita and Gustav, blackouts,
wildfires, ice storms, earthquakes and floods. During the 9/11 tragedy,
WNYC 93.9 FM/820 AM served as a 24/7 lifeline to hundreds of thousands
of people, while in the days that followed station personnel provided a
calm and recognizable voice that helped survivors cope. The station
kept reporting even while its FM transmitter located on the World Trade
Center was destroyed in the first attack.
Public Radio: Service to Everyone
Many public radio stations also provide critical services to
disabled Americans. Radio reading services in every major market in the
United States provide millions of visually impaired persons the ability
to function more independently in their communities. Our Nation's
elderly and military veterans returning home injured or disabled from
foreign combat duty depend on these broadcasts for their only access to
current print-based news and information.
Everyone with a visual impairment, physical disability or learning
disability has a right to equal access to all forms of information
available to the general public. Audio information services provide
access to printed information for individuals who cannot read
conventional print because of blindness or any other visual, physical
or learning disability. Many audio information services provide service
to institutions as well as to individuals, such as hospital rooms,
assisted living facilities, low vision clinics, senior centers and
other institutional care facilities where qualified listeners may
reside or frequent.
Public Radio: A Sound Investment
At a time when the Federal Government is running a large deficit,
every program and function of the Government deserves to be
scrutinized. A review of Federal funding to public broadcasting is fair
and to be expected. But the truth remains that the Federal investment
in the public radio and public broadcasting system provides one of the
most effective returns of any program authorized by Congress. For a
modest Federal investment of just $1.39 per person per year, the
country is provided with exceptional journalism and culturally
enriching programming that elevates the national dialogue and leads to
a more informed citizenry.
In closing Chairman Harkin and Senator Shelby, I encourage you,
Members of the Subcommittee and your staffs to visit and tour your
local public radio stations to view first-hand how Federal dollars are
at work locally serving your constituents.
______

Prepared Statement of the National Primate Research Centers
The Directors of the eight National Primate Research Centers
(NPRCs) respectfully submit this written testimony for the record to
the Senate Appropriations Subcommittee on Labor, Health and Human
Services, Education and Related Agencies. The NPRCs appreciate the
commitment that the Members of this Subcommittee have made to
biomedical research through your support for the National Institutes of
Health (NIH) and recommend that you provide $32 billion for NIH in
fiscal year 2013, which represents a 4.2 percent increase above the
fiscal year 2012 level. Within this proposed increase, the NPRCs also
respectfully request that the Subcommittee provide strong support for
the NIH Office of Research Infrastructure Programs (ORIP), housed
within the NIH Office of the Director, which is the new administrative
home of the NPRCs. This support would help to ensure that the NPRCs and
other animal research resource programs continue to serve effectively
in their role as a vital national resource.
The mission of the National Primate Research Centers is to use
scientific discovery and nonhuman primate models to accelerate progress
in understanding human diseases, leading to interventions, treatments,
cures, and ultimately to overall better health of the Nation and the
world. The NPRCs collaborate as a transformative and innovative network
to develop and support the best science and act as a resource to the
biomedical research community as efficiently as possible. There is an
exceptional return on investment in the NPRC program; $10 is leveraged
for every $1 of research support for the NPRCs. It is important to
sustain funding for the NPRC program and the NIH as a whole and to
continue to grow and develop the innovative plan for the future of NIH.
NPRCs' Contributions to NIH Priorities
The NPRCs' activities are closely aligned with NIH priorities. In
fact, NPRC investigators conduct much of the Nation's basic and
translational nonhuman primate research, facilitate additional vital
nonhuman primate research that is conducted by hundreds of
investigators from around the country, provide critical scientific
expertise, train the next generation of scientists, and advance
cutting-edge technologies.
The fiscal year 2013 NIH congressional justification underscores
the vital role that the NPRCs play in NIH translational science efforts
and the broader biomedical research enterprise. With the recent
creation of the National Center for Advancing Translational Sciences
(NCATS), the NPRCs see a great opportunity to further integrate the
consortium as a trans-NIH resource on topics such as colony management,
training, genetics and genome banking. The NPRC consortium will
continue to engage as a resource for the Clinical and Translational
Science Award (CTSA) network to help clinical researchers increase
their knowledge of and access to nonhuman primates as animal models.
Outlined below are a few of the overarching goals and priorities
for the NPRCs, including specifics of how the NPRCs are striving to
achieve these through programs and activities across the centers.
Advance Translational Research Using Animal Models.--Nonhuman
primate models bridge the divide between basic biomedical research and
implementation in a clinical setting. Currently, seven of the eight
NPRCs are affiliated and collaborate with an NIH CTSA program through
their host institution. Specifically, the nonhuman primate models at
the NPRCs often provide the critical translational link between
research with small laboratory animals and studies involving humans. As
the closest genetic model to humans, nonhuman primates serve in the
process of developing new drugs, treatments, and vaccines to ensure
safe and effective use for the Nation's public.
It is neither cost effective nor feasible to reproduce these
specialized facilities and expertise at every research institution, so
the NPRCs are a valuable resource to the research community. Major
areas of research benefiting from the resources of the NPRCs include
AIDS, avian flu, Alzheimer's disease, Parkinson's disease, autism,
cardiovascular disease, diabetes, obesity, asthma, and endometriosis.
To facilitate these and other studies, the NPRC have developed a
resource of over 26,000 nonhuman primates, 70 percent of which are
rhesus monkeys, the most widely used nonhuman primate for HIV research
and a wide range of translational studies.
Strengthen the Research Workforce.--The success of the Federal
Government's efforts in enhancing public health is contingent upon the
quality of research resources that enable scientific research ranging
from the most basic and fundamental to the most highly applied.
Biomedical researchers have relied on one such resource--the NPRCs--for
nearly 50 years for research models and expertise with nonhuman
primates. The NPRCs are highly specialized facilities that foster the
development of nonhuman primate animal models and provide expertise in
all aspects of nonhuman primate biology. NPRC facilities and resources
are currently used by over 2,000 NIH funded investigators around the
country.
The NPRCs are also supportive of students interested in the
biomedical research at an early age. For example, the Yerkes NPRC
supports a program that connects with local high schools and colleges
in Atlanta, Georgia, and provides high school science students and
teachers with summer-long internships to participate in research
projects taking place at their center. Other NPRCs have similar
programs that help develop a pipeline of aspiring science students and
teachers.
Offer Technologies to Advance Translational Research and Expand
Informatics Approaches to Support Research.--The NPRCs have been
leading the development of a new Biomedical Informatics Research
Network (BIRN) for linking brain imaging, behavior, and molecular
informatics in nonhuman primate preclinical models of neurodegenerative
diseases. Using the cyberinfrastructure of BIRN for data-sharing, this
project will link research and information to other primate centers, as
well as other geographically-distributed research groups.
The Need for Facilities Support
The NPRC program is a vital resource for enhancing public health
and spurring innovative discovery. In an effort to address many of the
concerns within the scientific community regarding the need for funding
for infrastructure improvements, the NPRCs support the continuation of
a robust construction and instrumentation grant program at NIH.
Animal facilities, especially primate facilities, are expensive to
maintain and are subject to abundant ``wear and tear.'' In prior years,
funding was set aside that fulfilled the infrastructure needs of the
NPRCs and other animal research facilities. The NPRCs are dependent on
strong support for the P51 base grant program which is essential for
the operational costs, and the C06 and G20 programs which support
construction and renovation of animal facilities. Without proper
infrastructure, the ability for animal research facilities, including
the NPRCs, to continue to meet the high demand of the biomedical
research community will be unsustainable.
Thank you for the opportunity to submit this written testimony and
for your attention to the critical need for primate research and the
continuation of infrastructure support. We thank you for your support
of NIH and urge you to provide $32 billion for the agency in the fiscal
year 2013 appropriations bill.
______

Prepared Statement of the National Respite Coalition
Mr. Chairman, I am Jill Kagan, Chair of the National Respite
Coalition (NRC), a network of respite providers, family caregivers,
national, State and local agencies and organizations who support
respite. Thirty State respite coalitions are also affiliated with the
NRC. This statement is presented on behalf of these organizations. The
NRC also facilitates the Lifespan Respite Task Force, a coalition of
over 200 national, State and local groups who support the Lifespan
Respite Program and its continued funding. We are requesting that the
Subcommittee include $5 million for the Lifespan Respite Care Program
administered by the U.S. Administration on Aging in the fiscal year
2013 Labor, HHS, and Education appropriations bill. Given the serious
fiscal constraints facing the Nation, this request is only one-tenth of
the request the NRC made last year. This will enable:
--State replication of best practices in Lifespan Respite to allow
all family caregivers, regardless of the care recipient's age
or disability, to have access to affordable respite, and to be
able to continue to play the significant role in long-term care
that they are fulfilling today;
--Improvement in the quality of respite services currently available;
--Expansion of respite capacity to serve more families by building
new and enhancing current respite options, including
recruitment and training of respite workers and volunteers; and
--Greater consumer direction by providing family caregivers with
training and information on how to find, use and pay for
respite services.
who needs respite?
In 2009, about 61.6 million family caregivers provided care at some
time during the year. The estimated economic value of their unpaid
contributions was approximately $450 billion, up from an estimated $375
billion in 2007. This amount is more than total 2009 Medicaid spending,
including both Federal and State contributions for healthcare and long-
term services and supports ($361 billion). Including caregiving for
children with special needs in the total would add at least 4 to 8
million additional caregivers and another $50 to $100 billion to the
economic value of family caregiving (Feinberg, L.; Reinhard, S., et al,
Valuing the Invaluable: 2011 Update, The Growing Contributions and
Costs of Family Caregiving, AARP Public Policy Institute, 2011).
Family caregiving is not just an aging issue, but a lifespan one.
While the aging population is growing rapidly, the majority of family
caregivers are caring for someone under age 75 (56 percent); 28 percent
of family caregivers care for someone between the ages of 50-75, and 28
percent care for someone under age 50 (NAC and AARP, 2009). Many family
caregivers are in the sandwich generation--46 percent of women who are
caregivers of an aging family member and 40 percent of men also have
children under the age of 18 at home (Aumann, Kerstin and Ellen
Galinsky, et al. 2008). And 6.7 million children, are in the primary
custody of an aging grandparent or other relative.
Families of the wounded warriors, military personnel who returned
from Iraq and Afghanistan with traumatic brain injuries and other
serious chronic and debilitating conditions, don't have full access to
respite. Even with enactment of the new VA Family Caregiver Support
Program, the need for respite will remain high for all veterans and
their family caregivers. Among family caregivers of veterans whose
illness, injury or condition is in some way related to military service
surveyed in 2010, only 15 percent had received respite services from
the VA or other community organization within the past 12 months.
Caregivers whose veterans have PTSD are only about half as likely as
other caregivers to have received respite (11 percent vs. 20 percent)
(NAC, Caregivers Of Veterans--Serving On The Homefront, November 2010).
Sixty-eight percent of veterans' caregivers reported their situation as
highly stressful compared to 31 percent of caregivers nationally, and
three times as many say there is a high degree of physical strain (40
percent vs. 14 percent) (NAC, 2010). Veterans' caregivers specifically
asked for up-to-date lists of respite providers in their communities
and help to find services, the very thing Lifespan Respite is charged
to provide (NAC, 2010).
National, State and local surveys have shown respite to be the most
frequently requested service of the Nation's family caregivers (The
Arc, 2011; National Family Caregivers Association, 2011). Other than
financial assistance for caregiving through direct vouchers payments or
tax credits, respite is the number one national policy related to
service delivery that family caregivers prefer (NAC and AARP, 2009).
Yet respite is unused, in short supply, inaccessible, or unaffordable
to a majority of the Nation's family caregivers. The NAC 2009 survey
found that despite the fact that among the most frequently reported
unmet needs of family caregivers were ``finding time for myself'' (32
percent), ``managing emotional and physical stress'' (34 percent), and
``balancing work and family responsibilities'' (27 percent), nearly 90
percent of family caregivers across the lifespan are not receiving
respite services at all.
An estimated 80 percent of all long-term care in the United States
is provided at home. This percentage will only rise in the coming
decades with greater life expectancies of individuals with disabling
and chronic conditions living with their aging parents or other
caregivers, the aging of the baby boom generation, and the decline in
the percentage of the frail elderly who are entering nursing homes.
respite barriers and the effect on family caregivers
Barriers to accessing respite include reluctance to ask for help,
fragmented and narrowly targeted services, cost, and the lack of
information about respite or how to find or choose a provider. Even
when respite is an allowable funded service, a critically short supply
of well-trained respite providers may prohibit a family from making use
of a service they so desperately need. Lifespan Respite is designed to
help States eliminate these barriers through improved coordination and
capacity building.
While most families take great joy in helping their family members
to live at home, it has been well documented that family caregivers
experience physical and emotional problems directly related to their
caregiving responsibilities. In a 2009 survey of family caregivers, a
majority (51 percent) who are caring for someone over age 18 have
medium or high levels of burden of care, measured by the number of
activities of daily living with which they provide assistance, and 31
percent were identified as ``highly stressed'' (NAC and AARP, 2009).
While family caregivers of children with special healthcare needs are
younger than caregivers of adults, they give lower ratings to their
health. Caregivers of children are twice as likely as the general adult
population to say they are in fair/poor health (26 percent vs 13
percent) (Provisional summary Health Statistics for U.S. Adults,
National Health Interview Survey, 2008, dated August 2009).
The decline of family caregiver health is one of the major risk
factors for institutionalization of a care recipient, and there is
evidence that care recipients whose caregivers lack effective coping
styles or have problems with depression are at risk for falling,
developing preventable secondary complications such as pressure sores
and experiencing declines in functional abilities (Elliott & Pezent,
2008). Care recipients may also be at risk for encountering abuse from
caregivers when the recipients have pronounced need for assistance and
when caregivers have pronounced levels of depression, ill health, and
distress (Beach et al., 2005; Williamson et al., 2001).
Supports that would ease family caregiver stress, most importantly
respite, are too often out of reach or completely unavailable.
Restrictive eligibility criteria also preclude many families from
receiving services or continuing to receive services for which they
once were eligible. Children with disabilities will age out of the
system when they turn 21 and they will lose many of the services, such
as respite. A recent survey of nearly 5,000 caregivers of individuals
with intellectual and developmental disabilities (I/DD) conducted by
The Arc found: the vast majority of caregivers report that they are
suffering from physical fatigue (88 percent), emotional stress (81
percent) and emotional upset or guilt (81 percent) some or most of the
time; 1 out of 5 families (20 percent) report that someone in the
family had to quit their job to stay home and support the needs of
their family member; and more than 75 percent of family caregivers
caring for adult children with developmental disabilities could not
find respite services (The Arc, 2011). Respite may not exist at all in
some States for individuals with Alzheimer's, those under age 60 with
conditions such as ALS, MS, spinal cord or traumatic brain injuries, or
children with serious emotional conditions.
respite benefits families and is cost saving
Respite has been shown to be an effective way to reduces stress and
improve the health and well-being of family caregivers that in turn
helps avoid or delay out-of-home placements, such as nursing homes or
foster care, minimizes the precursors that can lead to abuse and
neglect, and strengthens marriages and family stability. A U.S.
Department of Health and Human Services report prepared by the Urban
Institute found that higher caregiver stress among those caring for the
aging increases the likelihood of nursing home entry. Reducing key
stresses on caregivers, such as physical strain and financial hardship,
through services such as respite would reduce nursing home entry
(Spillman and Long, USDHHS, 2007). The budgetary benefits that accrue
because of respite are just as compelling. Delaying a nursing home
placement for just one individual with Alzheimer's or other chronic
condition for several months can save thousands of dollars. Researchers
at the University of Pennsylvania studied the records of over 28,000
children with autism ages 5 to 21 who were enrolled in Medicaid in
2004. They concluded that for every $1,000 States spent on respite
services in the previous 60 days, there was an 8 percent drop in the
odds of hospitalization (Mandell, David S., et al, 2012). In an Iowa
survey of parents of children with disabilities, a significant
relationship was demonstrated between the severity of a child's
disability and their parents missing more work hours than other
employees. It was also found that the lack of available respite
appeared to interfere with parents accepting job opportunities.
(Abelson, A.G., 1999)
In the private sector, the Metropolitan Life Insurance Company and
the National Alliance for Caregivers found that U.S. businesses lose
from $17.1 billion to $33.6 billion per year in lost productivity of
family caregivers. (MetLife and National Alliance for Caregiving,
2006). Another study from the National Alliance on Caregiving and
Evercare demonstrated that the economic downturn has had a particularly
harsh effect on family caregivers. Of the 6 in 10 caregivers who are
employed, 50 percent of them are less comfortable during the economic
downturn with taking time off from work to care for a family member or
friend. A similar percentage (51 percent) says the economic downturn
has increased the amount of stress they feel about being able to care
for their relative or friend. Respite for working family caregivers
could help improve job performance and employers could potentially save
billions.
lifespan respite care program will help
The Lifespan Respite Care Program is based on the success of
statewide Lifespan Respite programs in Oregon, Nebraska, Wisconsin and
Oklahoma. The Federal Lifespan Respite program is administered by the
U.S. Administration on Aging, Department of Health and Human Services
(HHS). AoA provides competitive grants to State agencies in concert
with Aging and Disability Resource Centers working in collaboration
with State respite coalitions or other State respite organizations. The
program was authorized at $53.3 million in fiscal year 2009 rising to
$95 million in fiscal year 2011. Congress appropriated $2.5 million in
fiscal year 2009-2012. Since 2009, 30 States have received 3-year
$200,000 Lifespan Respite Grants from AoA since 2009. Last year, seven
States and the District of Columbia received one-time $150,000
expansion grants to focus on direct services, especially for those who
are currently unserved.
The purpose of the law is to expand and enhance respite services,
improve coordination, and improve respite access and quality. States
are required to establish State and local coordinated Lifespan Respite
care systems to serve families regardless of age or special need,
provide new planned and emergency respite services, train and recruit
respite workers and volunteers and assist caregivers in gaining access
to services. Those eligible would include family members, foster
parents or other adults providing unpaid care to adults who require
care to meet basic needs or prevent injury and to children who require
care beyond that required by children generally to meet basic needs.
Lifespan Respite, defined as a coordinated system of community-
based respite services, helps States use limited resources across age
and disability groups more effectively. Provider pools can be
recruited, trained and shared, administrative burdens reduced by
coordinating resources, and savings used to fund new respite services
for families who do not qualify for any Federal or State program. The
Government Accountability Office summarized the innovative activities
undertaken by the first 24 States to implement Lifespan Respite Systems
in its report to Congress, Respite Care: Grants and Cooperative
Agreements Awarded to Implement the Lifespan Respite Care Act. GAO-11-
28R, Oct. 22, 2010.
how is lifespan respite program making a difference?
With limited funds, Lifespan Respite grantees are engaged in
innovative activities such as:
--In Tennessee and Rhode Island, the Lifespan Respite program is
building respite capacity by expanding volunteer networks of
providers by recruiting University students or Senior Corps
volunteers or expanding the national TimeBanks model for
establishing voluntary family cooperative respite strategies.
--In Texas, the Lifespan Respite program has established a statewide
Respite Coordination Center, and an online database.
--In North Carolina, South Carolina, and Alabama, the State respite
coalition and the Lifespan Respite programs are partnering in
new ways with the untapped faith community to provide respite,
especially in rural areas.
--The North Carolina Lifespan Respite Program has challenged each of
its 100 counties to come up with a strategy, no matter how
great or how small, to improve respite service delivery
locally.
--In New Hampshire, new providers have been recruited and trained
through partnerships with the New Hampshire National Alliance
on Mental Illness, New Hampshire Family Voices, and the College
of Direct Support with funding from the Department of Labor to
expand the pool of respite providers to work with teens and
older individuals with mental health conditions or other groups
where respite is in short supply.
--In Illinois and Arizona, State grantees and their partners are
working with child and adult protective services to ensure
respite is available on an emergency basis for the most
vulnerable families.
Across the board, States are building respite registries and ``no
wrong door systems'' in collaboration with State respite coalitions and
Aging and Disability Resource Centers to help family caregivers access
respite and funding sources. Oklahoma, Alabama, Nevada, Tennessee and
others are using Lifespan Respite grants to expand or implement
participant-directed respite through coordinated voucher systems so
that family caregivers have greater control over the type and quality
of the respite they select. All State grantees secure commitments from
partnering State agencies to share information and coordinate resources
to build a seamless Lifespan Respite system for accessing respite.
Even with these State efforts, current funding is wholly
inadequate. Close to 90 percent of the Nation's family caregivers still
are not receiving respite. More than half of them are caring for
someone under age 75 with early Alzheimer's, MS, ALS, traumatic brain
or spinal cord injury, mental health conditions, developmental
disabilities or cancer. The goal of Lifespan Respite System is to
coordinate respite services and funding, maximize existing resources
and leverage new dollars in both the public and private sectors to
build respite capacity and serve the unserved; $5 million in fiscal
year 2013 could allow new States to start Lifespan Respite Programs and
ensure that the 2010-2012 grantees be able to complete the work that
they have started. As it is, given the inadequate funding for fiscal
year 2012, only up to 5 of the original 12 2009 grantees will be funded
again before they have had a chance to make a lasting impact.
No other Federal program mandates respite as its sole focus. No
other Federal program would help ensure respite quality or choice, and
no current Federal program allows funds for respite start-up, training
or coordination or to address basic accessibility and affordability
issues for families. We urge you to include at least $5 million in the
fiscal year 2013 Labor, HHS, Education appropriations bill so that
Lifespan Respite Programs can be replicated and sustained in the States
and more families, with access to respite, will be able to continue to
play the significant role that they are fulfilling today.
______

Prepared Statement of the National Technical Institute for the Deaf and
Rochester Institute of Technology
Mr. Chairman and Members of the Committee: I am pleased to present
the fiscal year 2013 budget request for NTID, one of nine colleges of
RIT, in Rochester, New York. Created by Congress by Public Law 89-36 in
1965, we provide university technical and professional education for
students who are deaf and hard-of-hearing, leading to successful
careers in high-demand fields for a sub-population of individuals
historically facing high rates of unemployment and under-employment. We
also provide baccalaureate and graduate level education for hearing
students in professions serving deaf and hard-of-hearing individuals.
NTID students live, study and socialize with more than 15,000 hearing
students on the RIT campus.
Budget Request
On behalf of NTID, for fiscal year 2013 I would like to request
$70,577,000, of which $68,577,000 would be for Operations and
$2,000,000 for Construction. This funding is necessary to allow us to
continue to support record levels of enrollment, respond to increased
demand for access services, and address strategic initiatives.
Construction funds will be used for major renovations to a building
designed more than 30 years ago that houses two major NTID programs.
I make this request within the context of definitive actions taken
by NTID to recognize the difficult economic times in which we operate.
In fiscal year 2012, NTID operated with essentially the same level of
Federal support as in fiscal year 2011. We accomplished this through
the sound management of resources that were available as well as
reducing 3 percent of our headcount. We have continued to increase
tuition and fees, as these are our primary sources of non-Federal
support. Over the past 6 years, tuition and fees have increased by 40
percent. These non-Federal revenues now represent 27 percent of our
operating budget--up from 9 percent in 1970.
Enrollment
In fiscal year 2012 (Fall 2011), we attracted the largest
enrollment in our history--1,547 students. Truly a national program,
NTID has enrolled students from all 50 States. Over the last 6 years,
our enrollment has increased 24 percent (297 students). By granting
this request for fiscal year 2013, NTID will be able to serve this
record high enrollment level. Our enrollment history over the last 6
years is shown below:

NTID ENROLLMENTS: SIX-YEAR HISTORY
--------------------------------------------------------------------------------------------------------------------------------------------------------
Deaf/Hard-of-Hearing Students Hearing Students
-------------------------------------------------------------------------------- Grand
Fiscal Year Interpreting Total
Undergrad Grad RIT MSSE Subtotal Program MSSE Subtotal
--------------------------------------------------------------------------------------------------------------------------------------------------------
2007......................................................... 1,017 47 31 1,095 130 25 155 1,250
2008......................................................... 1,103 51 31 1,185 130 28 158 1,343
2009......................................................... 1,212 48 24 1,284 135 31 166 1,450
2010......................................................... 1,237 38 32 1,307 138 29 167 1,474
2011......................................................... 1,263 40 29 1,332 147 42 189 1.521
2012......................................................... 1,281 42 31 1,354 160 33 193 1,547
--------------------------------------------------------------------------------------------------------------------------------------------------------

NTID Academic Programs
NTID offers high quality, career-focused associate degree programs
preparing students for specific well-paying technical careers. NTID
also is expanding the number of its transfer associate degree programs,
currently numbering seven, to better serve the higher achieving segment
of our student population seeking bachelor's and master's degrees in an
increasingly demanding marketplace. These transfer programs provide
seamless transition to baccalaureate studies in the other colleges of
RIT. In support of those deaf and hard-of-hearing students enrolled in
the other RIT colleges, NTID provides a range of access services
(including interpreting, real-time speech-to-text captioning, and note-
taking) as well as tutoring services. One of NTID's greatest strengths
is our outstanding track record of assisting high-potential students to
gain admission to, and graduate from, the other colleges of RIT at
rates comparable to their hearing peers.
A cooperative education (co-op) component is an integral part of
academic programming at NTID and prepares students for success in the
job market. A co-op gives students the opportunity to experience a
real-life job situation and focus their career choice. Students develop
technical skills and enhance vital personal skills such as teamwork and
communication, which will make them better candidates for full-time
employment after graduation. Over 250 students each year participate in
10-week co-op experiences that augment their academic studies, refine
their social skills, and prepare them for the competitive working
world.
Student Accomplishments
For our graduates, over the past 5 years, an average of 92 percent
have been placed in jobs commensurate with the level of their
education. Of our fiscal year 2010 graduates (the most recent class for
which numbers are available), 57 percent were employed in business and
industry, 27 percent in education/nonprofits, and 16 percent in
government.
Graduation from NTID has a demonstrably positive effect on
students' earnings over a lifetime, and results in a noteworthy
reduction in dependence on Supplemental Security Income (SSI), Social
Security Disability Insurance (SSDI) and public assistance programs. In
fiscal year 2007, NTID, the Social Security Administration, and Cornell
University examined approximately 13,000 deaf and hard-of-hearing
individuals who applied and attended NTID over our entire history. The
studies show that NTID graduates over their lifetimes are employed at a
much higher rate, earn substantially more (therefore paying
significantly more in taxes), and participate at a much lower rate in
SSI, SSDI, and public assistance programs than those who withdraw or
who apply but do not attend NTID. Considering the reduced dependency on
these Federal income support programs, the Federal investment in NTID
not only makes a positive difference in individual earnings, but also
returns significant societal dividends.
Access Services
NTID provides an access services system to meet the needs of a
large number of deaf and hard-of-hearing students enrolled in
baccalaureate and graduate degree programs in RIT's other colleges as
well as students enrolled in NTID programs who take courses in the
other colleges of RIT. Access services also are provided for events and
activities throughout the RIT community. Access services include sign
language interpreting, real-time captioning, classroom notetaking
services, captioned classroom video materials, and Assistive Listening
Services.
As enrollments have steadily increased, so has the demand for
access services. In fiscal year 2011, 131,065 hours of interpreting
were provided--an increase of 18 percent compared to fiscal year 2007.
In fiscal year 2011, 21,493 hours of real-time captioning were provided
to students--a 39 percent increase over fiscal year 2007. The increase
in demand is partly a result of the increase in the number of students
enrolled in baccalaureate programs at RIT and the number of students
with cochlear implants. In fiscal year 2012, there were 515 deaf and
hard-of-hearing students enrolled in baccalaureate programs at RIT--a
17 percent increase compared to fiscal year 2007. In fiscal year 2012,
there were 331 students with cochlear implants--a 56 percent increase
over fiscal year 2007. We will be able to address this growing demand
with our fiscal year 2013 funding request.
Strategic Decisions 2020
In 2010, NTID completed Strategic Decisions 2020, a strategic plan
based on our founding mission statement. This statement sets forth our
institutional responsibility to work with students to develop their
academic, career and life-long learning skills as future contributors
in a rapidly changing world. It also recognizes our role as a special
resource for preparing individuals who are deaf and hard-of-hearing,
for conducting applied research in areas critical to the advancement of
individuals who are deaf and hard-of-hearing, and for disseminating our
collective and cumulative expertise.
Strategic Decisions 2020 establishes key initiatives responding to
future challenges and shaping future opportunities. These initiatives,
which began implementation in fiscal year 2011, include:
--Pursuing enrollment targets and admissions and programming
strategies that will result in increasing numbers of our
graduates achieving baccalaureate degrees and higher, while
maintaining focus and commitment to quality associate-level
degree programs leading directly to the workplace;
--Improving services to under-prepared students through working with
regional partners to implement intensive summer academic
preparation programs in selected high-growth, ethnically
diverse areas of the country;
--Expanding NTID's role as a National Resource Center of Excellence
regarding the education of deaf and hard-of-hearing students in
senior high school (grades 10, 11 and 12) and at the
postsecondary level; and
--Enhancing efforts to become a recognized national leader in the
exploration, adaptation, testing, and implementation of new
technologies to enhance access to, and support of, learning by
deaf and hard-of-hearing individuals.
Construction Needs
On behalf of NTID, I am requesting $2,000,000 for Construction to
begin critical and long-overdue renovations to a 30-year-old building
that houses 2 major programs and one-third of the NTID workforce. The
original building design provided office space for approximately 98
access service staff members. Today, there are 200 staff housed in the
building. The academic program in Information and Computing Studies has
been unable to keep their teaching laboratories, originally designed in
1981, up to date in terms of functionality and accessibility (including
ADA compliance). Failure to renovate this building will materially
impact students' educational opportunities as well as the ability to
provide them with quality access services. NTID is focused only on
renovations that are absolutely necessary to maintain educational
quality. For the past 2 fiscal years, most or all of NTID's
Construction request has been diverted to Operations.
Summary
It is extremely important that our fiscal year 2013 funding request
be granted in order that we might continue our mission to prepare deaf
and hard-of-hearing people to enter the workplace and society. Our
alumni have demonstrated that they can achieve independence, contribute
to society, and find sustainable employment as a result of NTID.
We are hopeful that the members of the Committee will agree that
NTID, with its long history of successful stewardship of Federal funds
and outstanding educational record of service with people who are deaf
and hard-of-hearing, remains deserving of your support and confidence.
Likewise, we will continue to demonstrate to Congress and the American
people that NTID is a proven economic investment in the future of young
deaf and hard-of-hearing citizens. Quite simply, NTID is a Federal
program that works.
______

Prepared Statement of the Population Association of America/Association
of Population Centers
Introduction
Thank you, Chairman Harkin, Ranking Member Shelby, and other
distinguished members of the Subcommittee, for this opportunity to
express support for the National Institutes of Health (NIH), the
National Center for Health Statistics (NCHS), and Bureau of Labor
Statistics (BLS).
Background on the PAA/APC and Demographic Research
The Population Association of America (PAA)
(www.populationassociation.org) is a scientific organization comprised
of over 3,000 population research professionals, including
demographers, sociologists, statisticians, and economists. The
Association of Population Centers (APC) (www.popcenters.org) is a
similar organization comprised of over 40 universities and research
groups that foster collaborative demographic research and data sharing,
translate basic population research for policymakers, and provide
educational and training opportunities in population studies.
Population research centers are located at public and private research
institutions nationwide.
Demography is the study of populations and how or why they change.
Demographers, as well as other population researchers, collect and
analyze data on trends in births, deaths, and disabilities as well as
racial, ethnic, and socioeconomic changes in populations. Major policy
issues population researchers are studying include the demographic
causes and consequences of population aging, trends in fertility,
marriage, and divorce and their effects on the health and well-being of
children, and immigration and migration and how changes in these
patterns affect the ethnic and cultural diversity of our population and
the Nation's health and environment.
The NIH mission is to support biomedical, social, and behavioral
research that will improve the health of our population. The health of
our population is fundamentally intertwined with the demography of our
population. Recognizing the connection between health and demography,
the NIH supports extramural population research programs primarily
through the National Institute on Aging (NIA) and the National
Institute of Child Health and Human Development (NICHD).
National Institute on Aging
According to the U.S. Census Bureau, the number of people age 65
and older will more than double between 2010 and 2050 to 88.5 million
or 20 percent of the population; and those 85 and older will increase
three-fold, to 19 million. The substantial growth in the older
population is driving policymakers to consider dramatic changes in
Federal entitlement programs, such as Medicare and Social Security, and
other budgetary changes that could affect programs serving the elderly.
To inform this debate, policymakers need objective, reliable data about
the antecedents and impact of changing social, demographic, economic,
health and well being characteristics of the older population. The NIA
Division of Behavioral and Social Research (BSR) is the primary source
of Federal support for basic research on these topics.
In addition to supporting an impressive research portfolio, that
includes the prestigious Centers of Demography of Aging, the Roybal
Centers for Translational Research on Aging, and the Research Centers
for Minority Aging, the NIA BSR program also supports several large,
accessible data surveys. These surveys include a new study, the
National Health and Aging Trends Study (NHATS) will soon start
providing detailed and nationally representative information on older
people (and their informal caregivers) with disabilities. Another
survey, the Health and Retirement Study (HRS), has become one of the
seminal sources of information to assess the health and socioeconomic
status of older people in the United States. Since 1992, the HRS has
tracked 27,000 people, providing data on a number of issues, including
the role families play in the provision of resources to needy elderly
and the economic and health consequences of a spouse's death. HRS is
particularly valuable because its longitudinal design allows
researchers to study immediately the impact of important policy changes
such as Medicare Part D and the opportunity to gain insight into
emerging health-related policy issues, such as HRS data indicating an
increase in pre-retirees self-reported rates of disability. It is so
respected that the study is being replicated in 30 other countries,
providing important data on how the United States compares with other
countries whose populations are aging more rapidly. In March 2012, HRS
took an important step forward by announcing that genetic data from
approximately 13,000 individuals were posted to dbGAP, the NIH's online
genetics database. The data are comprised of approximately 2.5 million
genetic markers from each person and are now available for analysis by
qualified researchers. These data will enhance the ability of
researchers to track the onset and progression of diseases and
conditions affecting the elderly.
Despite its ability to support important research projects and
programs, the NIA faces unique funding challenges. While the current
dollars appropriated to NIA seem to have risen significantly since
fiscal year 2003, when adjusted for inflation, they have decreased
almost 18 percent in the last 9 years. Further, according to the NIH
Almanac, out of each dollar appropriated to NIH, only 3.6 cents goes
toward supporting the work of the NIA-compared to 16.5 cents to the
National Cancer Institute, 14.6 cents to the National Institute of
Allergy and Infectious Diseases, 10 cents to the National Heart, Lung,
and Blood Institute, and 6.3 cents to the National Institute of
Diabetes and Digestive and Kidney Diseases. Finally, despite enacting
cost cutting measures, such as differing paylines for projects costing
above and below $500,000 and a decrease in non-competing commitments,
NIA's success rates remained below the NIH average in 2011.
As research costs increase, NIA faces the prospect of funding fewer
grants to sustain larger ones in its commitment base. With additional
support in fiscal year 2013, the NIA BSR program could fully fund its
large-scale projects, including the existing centers programs and
ongoing surveys, without resorting to cost cutting measures, such as
cutting sample size, while continuing to support smaller investigator
initiated projects. PAA and APC support providing a funding level
recommended by the Friends of the National Institute on Aging and the
Leadership Conference on Aging coalitions to provide NIA with a $300
million increase in fiscal year 2013, bringing NIA to $1.4 billion.
Eunice Kennedy Shriver National Institute on Child Health and Human
Development
Since its establishment in 1968, the Eunice Kennedy Shriver NICHD
Center for Population Research has supported research on population
processes and change. Today, this research is housed in the Center's
Demographic and Behavioral Sciences Branch (DBSB). DBSB supports
research in three broad areas: demography, HIV/AIDs, other sexually
transmitted diseases, and other reproductive health; and population
health, with focus on early life influences and policy.
DBSB is the major supporter of the national studies that track the
health and well-being of children and their families from childhood
through adulthood. These studies include Fragile Families and Child
Well Being, the first scientific study to track the health and
development of children born to unmarried parents; the National
Longitudinal Study of Youth, a multigenerational of health and
development; and the National Longitudinal Study of Adolescent Health
(Add Health), tracing the effects of childhood and adolescent exposures
on later health. DBSB supports the prompt and widespread release of
demographic data collected with NIH and other Federal Government
funding through the Demographic Data Sharing and Archiving project.
One of the most important programs the NICHD DBSB supports is the
Research Infrastructure for Demographic and Behavioral Population
Science (DBPop). This program promotes innovation, supports
interdisciplinary research, translates scientific findings into
practice, and develops the next generation of population scientists,
while at the same time providing incentives to reduce the costs and
increase the efficiency of research by streamlining and consolidating
research infrastructure within and across research institutions. DBPop
supports research at 24 private and public research institutions
nationwide, the focal points for the demographic research field for
innovative research and training and the development and dissemination
of widely used large-scale databases.
NIH-funded demographic research provides critical scientific
knowledge on issues of greatest consequence for American families:
marriage and childbearing, childcare, work-family conflicts, and family
and household behavior. Demographic research is having a large impact
in public health, particularly on issues such as infant and child
health and development, and adolescent and young adult health, and
health disparities. Research supported by DBSB has revealed the
critical role of marriage and stable families in ensuring that children
grow up healthy, achieving developmental and educational milestones.
DBSB supported projects provides policymakers and communities with
evidence-based knowledge on the critical intervention points and
effective interventions to promote health. An example is a new finding
from DBSB supported research on low birth weight, a condition
associated with higher risk of a number of serious medical
complications and learning disabilities for children. Based on an
analysis of more than 5 million medical records, researchers found that
pregnant women assaulted by an intimate partner are at increased risk
of giving birth to infants at lower birth weights. This finding was
adopted by the American College of Obstetricians and Gynecologists to
develop physician training materials for screening patients for
intimate partner violence.
With additional support in fiscal year 2013, NICHD could sustain
full funding to its large-scale surveys, which serve as a resource for
researchers nationwide. Furthermore, the Institute could apply
additional resources toward improving its funding payline, which is one
of the lowest of the NIH Institutes and Centers. Additional support
could be used to support and stabilize essential training and career
development programs necessary to prepare the next generation of
researchers and to support and expand proven programs, such as DBPop.
For these reasons, PAA and APC endorse the funding level recommended by
the Friends of the NICHD to fund the Institute at $1.37 billion in
fiscal year 2013.
National Children's Study
The PAA and APC are concerned about language included in the
President's fiscal year 2013 proposed budget regarding the National
Children's Study (NCS). Specifically, our organizations are troubled
that in its budget, NIH suggested abandoning its previous commitment to
a national probability sample because the study's recruitment goals
have fallen short and because cost containment remains a priority. Our
organizations have written to the NIH, urging them to work with experts
in probability sampling and to conduct research to evaluate the
feasibility and scientific value of any new sampling strategy--
particularly as it potentially affects the inclusion of vulnerable,
hard-to-reach populations, such as the children of legal and illegal
immigrants. We also encourage the agency to contract with an
independent scientific agency, such as the National Academy of
Sciences, to assess any new proposed study designs. Given the magnitude
of the study's scope, cost, and potential value to the scientific
research community in particular, PAA and APC believe the agency should
proceed cautiously before dramatic changes are made to this
consequential, national study.
National Center for Health Statistics
Located within the Centers for Disease Control (CDC), the National
Center for Health Statistics (NCHS) is the Nation's principal health
statistics agency, providing data on the health of the U.S. population
and backing essential data collection activities. Most notably, NCHS
funds and manages the National Vital Statistics System, which contracts
with the States to collect birth and death certificate information.
NCHS also funds a number of complex large surveys to help policymakers,
public health officials, and researchers understand the population's
health, influences on health, and health outcomes. These surveys
include the National Health and Nutrition Examination Survey (NHANES),
National Health Interview Survey (HIS), and National Survey of Family
Growth. Together, NCHS programs provide credible data necessary to
answer basic questions about the state of our Nation's health.
Despite recent steady funding increases, NCHS continues to feel the
effects of long-term funding shortfalls, compelling the agency to
undermine, eliminate, or further postpone the collection of vital
health data. For example, in 2009, sample sizes in HIS and NHANES were
cut, while other surveys, most notably the National Hospital Discharge
Survey, were not fielded. In 2009, NCHS proposed purchasing only ``core
items'' of vital birth and death statistics from the States (starting
in 2010), effectively eliminating three-fourths of data routinely used
to monitor maternal and infant health and contributing causes of death.
Fortunately, Congress and the new administration worked together to
give NCHS adequate resources and avert implementation of these
draconian measures. Also, funding from the Prevention and Public Health
Fund has been an invaluable source of support for the agency in fiscal
year 2011 and fiscal year 2012, providing much needed funding to, for
example, add components to NHANES and the National Hospital Ambulatory
Medical Care Survey to assess physical activity in children and gather
information on patients with heart disease and stroke, respectively.
Despite the recent infusion of vital funding, the agency's long-term
fiscal stability remains unstable.
PAA and APC, as members of The Friends of NCHS, support the
administration's request for fiscal year 2013, $162 million, a $23
million (17 percent) increase over the agency's fiscal year 2012
appropriation. This funding increase will fully support NCHS's ongoing
seminal surveys, enable the purchase of vital statistics data for 12
months within the calendar year, and allow the agency to proceed with
the goal of fully implementing electronic death records in all States
for more timely and accurate vital statistics collection.
Bureau of Labor Statistics
During these turbulent economic times, data produced by the Bureau
of Labor Statistics (BLS) are particularly relevant and valued. PAA and
APC members have relied historically on objective, accurate data from
the BLS. In recent years, our organizations have become increasingly
concerned about the state of the agency's funding.
We support the administration's request for BLS, which would
provide the agency with a total of $647 million in fiscal year 2013. We
are, however, opposed to the administration's proposed $6 million cut
to the National Longitudinal Surveys (NLS) program within BLS in fiscal
year 2013. A cut of this magnitude would force triennial fielding,
which will create serious respondent recall problems and degrade data
quality.
NLS data are essential to understanding how labor market
experiences evolve over the life-cycle, and how labor market outcomes
differ for Hispanics and non-Hispanics. The NLS data have been
collected for 47 years and are essential to understanding how labor
market experiences and outcomes evolve and differ. The proposed BLS
budget cuts will be devastating to the social science research
community and to policymakers who rely on the survey's findings. We are
pleased that the BLS restored funding to the NLS that it had initially
proposed to cut in fiscal year 2012. We hope that Congress will reject
this proposed cut in fiscal year 2013.
Summary of fiscal year 2013 Recommendations
In sum, the PAA and APC asks the Subcommittee to consider our
requests for fiscal year 2013:
--provide the NIH with $32 billion;
--provide the NIA with $1.4 billion;
--provide the NICHD with $1.37 billion;
--support the administration's request for the NCHS, $162 million;
and
--reject the administration's proposed $6 million cut to the National
Longitudinal Studies program at the Bureau of Labor Statistics.
Thank you for considering our requests and for supporting Federal
programs that benefit the population sciences.
______

Prepared Statement of the Physician Assistant Education Association
On behalf of its membership, 164 accredited physician assistant
(PA) education programs in the United States, the Physician Assistant
Education Association (PAEA) is pleased to submit these comments on the
fiscal year 2013 appropriations for PA education and other health
professionals programs that are authorized through Title VII and VIII
of the Public Health Service Act and administered through the Health
Resources and Services Administration (HRSA).
PAEA is a member of the Health Professions and Nursing Education
Coalition (HPNEC) and we support the HPNEC recommendation for funding
of at least $520 million in fiscal year 2013 for the health professions
education programs authorized under Title VII and VIII. HPNEC is an
informal alliance of more than 60 national organizations representing
schools, programs, health professionals and students dedicated to
ensuring that the healthcare workforce is trained to meet the needs of
the country's growing, aging and increasingly diverse population.
The Need for Increased Federal Funding for Physician Assistants
PAs are licensed healthcare professionals who practice medicine as
members of a team in concert with a supervising physician. PAs are
medical professionals trained at the graduate level who have the
advanced training to autonomously diagnose, treat, and prescribe
medication for patients in a cost-effective manner. PAs typically
complete their education and training within 27 months, and can enter
the workforce much more quickly than other post-graduate health
professions. PAs can only help meet the challenges facing America's
healthcare system if appropriate resources are available to meet the
demand for PA education. Title VII funding is the sole source of
Federal dollars available for PA education.
The way that PAs are trained in the United States--the caliber of
the institutions and the expertise of the educators--is the gold-
standard throughout the world. However, clinical site availability is
one of the profession's critical unmet needs, as schools are struggling
to train the growing classes of PAs. In order to support the growth of
the profession and enable PAs to enter the workforce, additional
Federal funding is needed to build infrastructure and improve the
quality of clinical sites used to train PAs. Incentives for appropriate
locations to offer their space can make a significant difference in
helping PAs complete their education in a timely manner and begin
treating patients. Similarly, a lack of preceptors is impeding the PA
educational system's ability to train adequate numbers of PAs. Choosing
a teaching career must be a practical and financially desirable option
for practicing and returning PAs in order for the profession to grow
and meet the demand for care. Financial incentives can help create such
an environment, ensuring the United States can increase the supply of
primary care clinicians and provide comprehensive clinical experiences
for students.
Physician Assistant Practice
The PA practice model is, by design, a team-based approach to
patient care and fits well into the patient-centered, medical home and
accountable care organization models expected to transform our reformed
healthcare system. The profession is projected to continue to grow as a
result of the projected shortage of physicians, the demand for services
from an aging population, and the continuously strong PA applicant
pool.
The base of applicants for PA programs has grown by more than 10
percent each year since 2000, and the Bureau of Labor Statistics
projects a 39 percent increase in the number of PA jobs between 2008
and 2018. With its relatively short initial training time and the
flexibility of generalist-training, the PA profession is well-
positioned to help fill projected shortages of available healthcare
professionals.
The need for generalist medical training, workforce diversity and
health providers willing to practice in underserved areas are key
priorities identified by HRSA. Studies have found that health
professionals from underserved areas are three to five times more
likely to return to underserved areas to provide care. To provide the
highest quality care, it is increasingly important that the health
workforce better represent America's changing demographics, as well as
addresses issues of disparities in healthcare. PA programs have been
successful in attracting students from underrepresented minority groups
and disadvantaged backgrounds. Title VII grants are also weighted
toward programs with a high success rate of placing PAs in underserved
communities and are helping the profession make even greater strides
toward these goals.
Title VII Funding
Title VII funding is the only potential source of Federal funding
for PA programs. These Federal dollars play a crucial role in
developing and supporting PA education programs, and are helping to
facilitate the growth of a profession that meets many of the 21st
century health system demands for improvements in quality, access and
cost of care.
Title VII funding fills a specific need for both curriculum and
faculty development. These grants enhance primary care clinical
training and education, assist PA programs with recruiting applicants
from minority and disadvantaged backgrounds, and fund innovative
programs that focus on educating a culturally competent workforce.
Title VII funding also increases the likelihood that PA students will
practice in medically underserved communities with health professional
shortages.
PA programs have already used Title VII funds to creatively expand
care to underserved areas and populations, as well as develop a diverse
PA workforce.
--A Texas program has used its PA training grant to support a distant
site in an underserved area. This grant provides assistance to
the program to recruit, educate and train PA students in the
largely Hispanic South Texas and mid-Texas/Mexico border areas
and supports new faculty development.
--A Utah program has used its PA training grant to promote
interprofessional teams--an area of strong emphasis in the
Patient Protection and Affordable Care Act. The grant allowed
the program to optimize its relationships with three service-
learning partners, develop new partnerships with service-
learning sites, and create a model geriatric curriculum that
includes didactic and clinical education.
--An Alabama program used its PA training grant to update and expand
current health behavior educational curriculum and HIV/STD
training. It was also able to include PA students from other
programs who were interested in rural, primary care medicine
for a 4-week comprehensive educational program in HIV diagnosis
and management.
--A South Carolina program has developed a model program that offers
a 2-year academic fellowship for recent PA graduates with at
least 1 year of clinical experience. To further enhance an
evidence-based approach to education and practice, two specific
practice projects were embedded in the fellowship experience.
Fellows direct and evaluate PA students' involvement in the
``Towards No Tobacco'' curriculum, aimed at fifth graders, and
the PDA Patient Data experience, aimed at assessing healthcare
services.
Title VII support for PA programs has been strengthened with the
enactment of the Patient Protection and Affordable Health Care Act
(Public Law 111-148), which provides a 15 percent allocation in the
appropriations process for PA programs at the primary care medicine
line. This funding will enhance capabilities to train a growing PA
workforce and is likely to increase the pool of faculty positions as PA
programs will now be eligible for faculty loan repayment. As is true of
many post-graduate programs, loan burdens are barriers to physician
assistant entry into academia.
In fiscal year 2013, a new priority for PA training grants will
focus on training 1,400 additional physician assistants over a 5 year
period, by providing funding to ``develop the infrastructure necessary
to expand and improve teaching quality at clinical sites for Physician
Assistant students.'' (Department of Health and Human Services, Fiscal
Year 2013, HRSA Justification for Estimates for Appropriations
Committee, Executive Summary). The future of the profession and its
ability to meet patients' demands for care rests in large part on the
ability to train the next generation of PAs. Title VII provides the
support needed to ensure both the quantity and quality of teaching
staff in the United States will continue to reflect the highest
educational standards in the world.
The History of Physician Assistant Education
The first physician assistant class of 1965 was comprised of Navy
corpsmen who served during the Vietnam war and applied their direct
medical experience in the military to practicing primary care. Since
those first three PAs graduated from Duke University, the profession
has grown dramatically. Today, there are 164 accredited PA programs
which graduate more than 6,000 new PAs each year, and more than 60 new
programs are in the pipeline.
The growth rate in the applicant pool is remarkable. Tracked via
the Centralized Application Service (CASPA), in March 2006 there were a
total of 7,608 applicants to PA education programs; as of March 2011,
there were 16,112--a 112 percent increase over the past 5 years.
One reason for the appeal of the PA profession is that the average
PA education program is 27 months in length, significantly shorter than
other post-graduate programs. Typically, 1 year is devoted to classroom
study and approximately 15 months are devoted to clinical rotations.
The curriculum generally includes 400 hours of basic sciences and
nearly 600 hours of clinical medicine. Within the healthcare workforce,
only physicians receive more clinical education than PAs.
Federal support has been critical to the development of the
profession at several key points, including the creation of the PAEA
Faculty Development Institute, which provides training for new and
experienced faculty to improve teaching quality and encourage sharing
of curricular resources. To allow the profession to meet the obvious
and growing demands of students and their future patients, continued
funding is critical.
Honoring the Roots of the PA Profession
As the first class of PAs demonstrated, veterans with medical
backgrounds are excellent potential candidates for PA programs due to
their leadership and professional skills. Special incentives for both
PA schools and students with a military background can help expedite
the process of matriculation into the educational system. PAEA and
other interested stakeholders are currently working with HRSA to
identify best practices in ``bridge programs'' and career counseling
services provided to service members and veterans interested in a
health career. Additionally, there is a new priority included in the
fiscal year 2013 PA training grant to identify best practices for:
--Expedited curricula;
--Enhanced veteran recruiting;
--Enhanced retention; and
--Enhanced mentoring services for veterans.
This program ensures that our Nation's service members with medical
skill and specialties are able to transition into a career in the
civilian workforce when they leave the military. They, too, can
contribute to a solution to the primary healthcare workforce shortage
if given the right opportunities.
Summary of fiscal year 2013 Funding Recommendations
The Physician Assistant Education Association requests that the
Appropriations Committee support funding for Title VII and VIII health
professions programs at a minimum of $520 million for fiscal year 2013.
This level of funding is needed to adequately support the Nation's
demand for primary care practitioners, particularly those who will
practice in medically underserved areas and serve vulnerable
populations. The Physician Assistant Education Association also
respectfully asks for support for the $12 million allocation in the
President's fiscal year 2013 budget request for PA education programs.
We thank the members of the subcommittee for their continued
support of the health professions and look forward to working with you
to solve the Nation's health workforce shortage and meet the need for
high quality, affordable healthcare accessible to all. We appreciate
the opportunity to present the Physician Assistant Education
Association's fiscal year 2013 funding recommendation.
______

Prepared Statement of Prevent Blindness America
Funding Request Overview
Prevent Blindness America appreciates the opportunity to submit
written testimony for the record regarding fiscal year 2013 funding for
vision and eye health related programs. As the Nation's leading
nonprofit, voluntary health organization dedicated to preventing
blindness and preserving sight, Prevent Blindness America maintains a
long-standing commitment to working with policymakers at all levels of
government, organizations and individuals in the eye care and vision
loss community, and other interested stakeholders to develop, advance,
and implement policies and programs that prevent blindness and preserve
sight. Prevent Blindness America respectfully requests that the
Subcommittee provide the following allocations in fiscal year 2013 to
help promote eye health and prevent eye disease and vision loss:
--Provide at least $1 million to maintain vision and eye health
efforts at the Centers for Disease Control and Prevention
(CDC).
--Support the Maternal and Child Health Bureau's (MCHB) National
Center for Children's Vision and Eye Health (Center).
--Provide at least $645 million in fiscal year 2013 to sustain
programs under the Maternal and Child Health (MCH) Block Grant.
--Provide $730 million to the National Eye Institute (NEI) in order
to bolster efforts to identify the underlying causes of eye
disease and vision loss, improve early detection and diagnosis,
and advance prevention and treatment efforts.
Introduction and Overview
Vision-related conditions affect people across the lifespan from
childhood through elder years. Good vision is an integral component to
health and well-being, affects virtually all activities of daily
living, and impacts individuals physically, emotionally, socially, and
financially. Loss of vision can have a devastating impact on
individuals and their families. An estimated 80 million Americans have
a potentially blinding eye disease, 3 million have low vision, more
than 1 million are legally blind, and 200,000 are more severely
visually blind. Vision impairment in children is a common condition
that affects 5 to 10 percent of preschool age children. Vision
disorders, including amblyopia (``lazy eye''), strabismus (``cross
eye''), and refractive error are the leading cause of impaired health
in childhood.
Alarmingly, while half of all blindness can be prevented through
education, early detection, and treatment, the NEI reports that ``the
number of Americans with age-related eye disease and the vision
impairment that results is expected to double within the next three
decades.'' \1\ Among Americans age 40 and older, the four most common
eye diseases causing vision impairment and blindness are age-related
macular degeneration (AMD), cataract, diabetic retinopathy, and
glaucoma.\2\ Refractive errors are the most frequent vision problem in
the United States--an estimated 150 million Americans use corrective
eyewear to compensate for their refractive error.\2\ Uncorrected or
under-corrected refractive error can result in significant vision
impairment.\2\
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\1\ ``Vision Problems in the U.S.: Prevalence of Adult Vision
Impairment and Age-Related Eye Disease in America,'' Prevent Blindness
America and the National Eye Institute, 2008.
\2\ Ibid.
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To curtail the increasing incidence of vision loss in America,
Prevent Blindness America advocates sustained and meaningful Federal
funding for programs that help promote eye health and prevent eye
disease, vision loss, and blindness; needed services and increased
access to vision screening; and vision and eye disease research. We
thank the Subcommittee for its consideration of our specific fiscal
year 2013 funding requests, which are detailed below.
Vision and Eye Health at the CDC: Helping to Save Sight and Save Money
The CDC serves a critical national role in promoting vision and eye
health. Since 2003, the CDC and Prevent Blindness America have
collaborated with other partners to create a more effective public
health approach to vision loss prevention and eye health promotion. The
CDC works to:
--Promote eye health and prevent vision loss.
--Improve the health and lives of people living with vision loss by
preventing complications, disabilities, and burden.
--Reduce vision and eye health related disparities.
--Integrate vision health with other public health strategies.
Prevent Blindness America requests at least $1 million in fiscal
year 2013 to maintain vision and eye health efforts of the CDC.
Adequate fiscal year 2013 resources will allow the CDC to continue to
address the growing public health threat of preventable chronic eye
disease and vision loss among at-risk and underserved populations
through increased coordination and integration of vision and eye health
at State and local health departments, and through community health
centers and rural services.
Integrating Vision Health into Broader Disease Prevention and Health
Promotion Efforts
A cornerstone activity of the vision and eye health work at the CDC
is its support and encouragement of efforts to better integrate State-
level initiatives to address vision and eye disease by approaching
vision health through other public health prevention, treatment, and
research efforts. Vision loss is associated with a myriad of other
serious, chronic, life threatening, and disabling conditions, including
diabetes, depression, unintentional injuries, and behavioral risk
factors such as tobacco use. Leveraging scarce resources and
recognizing the numerous connections between eye health and other
diseases, the CDC works to integrate and connect vision health
initiatives to other State, local, and community health programs.
For example, State-based programs to prevent and reduce diabetes
should include efforts to educate patients and healthcare providers on
the relationship between diabetes and certain eye problems, such as
diabetic retinopathy, glaucoma, and cataracts. Similarly, State
initiatives to reduce the incidence of falls among older Americans
should include vision screening, as studies have found that one of the
leading causes of falls and injuries among older adults is unaddressed
vision problems.
To advance State-based vision health integration, funding to the
CDC has supported two joint efforts, one in New York and the other in
Texas, focused on integrating vision-related services at the State and
local level. Working together, the State health departments of these
States and the State-based affiliates of Prevent Blindness America
promoted vision loss prevention strategies among community groups and
vision partners, and established State vision preservation plans. The
goal of these integration efforts was to ensure that vision loss and
eye health promotion are incorporated into all relevant local, State,
and Federal public health interventions, prevention and treatment
programs, and other initiatives that impact causes of--and factors that
contribute to--vision problems and blindness. By integrating efforts
and coordinating approaches in this manner, Federal and State resources
were used more efficiently, eye health problems and vision loss were
reduced, and the overall health and well-being of individuals and
communities were improved.
Investing in the Vision of Our Nation's Most Valuable Resource--
Children
While the risk of eye disease increases after the age of 40, eye
and vision problems in children are of equal concern. If left
untreated, they can lead to permanent and irreversible visual loss and/
or cause problems socially, academically, and developmentally. Although
more than 12.1 million school-age children have some form of a vision
problem, only one-third of all children receive eye care services
before the age of six.\3\
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\3\ ``Our Vision for Children's Vision: A National Call to Action
for the Advancement of Children's Vision and Eye Health, Prevent
Blindness America,'' Prevent Blindness America, 2008.
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In 2009, the MCHB established the National Center for Children's
Vision and Eye Health (the Center), a national vision health
collaborative effort aimed at developing the public health
infrastructure necessary to promote eye health and ensure access to a
continuum of eye care for young children.
The Center has established a National Expert Panel comprised of
experts in ophthalmology, optometry, pediatrics, public health,
childcare, academia, family advocacy, and others who have a stake in
the field of children's vision. Members of the National Expert Panel
provide recommendations toward national guidelines for quality
improvement strategies, vision screening and developing a continuum of
children's vision and eye health. In addition, they serve as advisors
to the Center as it pursues its goals and objectives.
With this support the Center, will continue to:
--Provide national leadership in dissemination of best practices,
infrastructure development, professional education, and
national vision screening guidelines that ensure a continuum of
vision and eye healthcare for children;
--Advance State-based performance improvement systems, screening
guidelines, and a mechanism for uniform data collection and
reporting; and
--Provide technical assistance to States in the implementation of
strategies for vision screening, establishing quality
improvement measures, and improving mechanisms for
surveillance.
Prevent Blindness America also requests at least $645 million in
fiscal year 2013 to sustain programs under the MCH Block Grant. The MCH
Block Grant enables States to expand critical healthcare services to
millions of pregnant women, infants and children, including those with
special healthcare needs. In addition to direct services, the MCH Block
Grant supports vital programs, preventive and systems building services
needed to promote optimal health.
Advance and Expand Vision Research Opportunities
Prevent Blindness America calls upon the Subcommittee to provide
$730 million for the NEI to bolster its efforts to identify the
underlying causes of eye disease and vision loss, improve early
detection and diagnosis of eye disease and vision loss, and advance
prevention and treatment efforts. Research is critical to ensure that
new treatments and interventions are developed to help reduce and
eliminate vision problems and potentially blinding eye diseases facing
consumers across the country.
Through additional support, the NEI will be able to continue to
grow its efforts to:
--Expand capacity for research, as demonstrated by the significant
number of high-quality grant applications submitted in response
to the American Recovery and Reinvestment Act opportunities.
--Address unmet need, especially for programs of special promise that
could reap substantial downstream benefits.
--Fund research to reduce healthcare costs, increase productivity,
and ensure the continued global competitiveness of the United
States.
By providing additional funding for the NEI at the NIH, essential
efforts to identify the underlying causes of eye disease and vision
loss, improve early detection and diagnosis of eye disease and vision
loss, and advance prevention, treatment efforts and health information
dissemination will be bolstered.
Conclusion
On behalf of Prevent Blindness America, our Board of Directors, and
the millions of people at risk for vision loss and eye disease, we
thank you for the opportunity to submit written testimony regarding
fiscal year 2013 funding for the CDC's vision and eye health efforts,
the MCHB's National Center for Children's Vision and Eye Health, and
the NEI. Please know that Prevent Blindness America stands ready to
work with the Subcommittee and other Members of Congress to advance
policies that will prevent blindness and preserve sight. Please feel
free to contact us at any time; we are happy to be a resource to
Subcommittee members and your staff. We very much appreciate the
Subcommittee's attention to--and consideration of--our requests.
______

Prepared Statement of the Pulmonary Hypertension Association
PHA fiscal year 2013 LHHS appropriations recommendations
$7 billion for HRSA, an increase of $500 million over fiscal year
2012, including proportional increases for the Healthcare Systems
Bureau and Organ Donation and Transplantation activities to promote PH
education amongst healthcare providers and improve health outcomes for
PH transplant patients.
$7.8 billion for CDC, an increase of $1.7 billion over fiscal year
2012, including a proportional increase for the National Center for
Chronic Disease Prevention and Health Promotion (NCCDPHP) to facilitate
critical PH education and awareness activities.
$32 billion for NIH, an increase of $1.3 billion over fiscal year
2012, including proportional increases for the National Heart, Lung,
and Blood Institute (NHLBI); National Center for Advancing
Translational Sciences (NCATS); Office of the Director (OD); and other
NIH Institutes and Centers to facilitate adequate growth in the
pulmonary hypertension (PH) research portfolio.
Chairman Harkin, Ranking Member Shelby, and distinguished members
of the Subcommittee, thank you for the opportunity to submit testimony
on behalf of PHA. It is my honor to represent the hundreds of thousands
of Americans who are affected by this devastating disease.
I'd like to open with a personal story. Several years ago, I had
the opportunity to visit the Pulmonary Hypertension Association of
China and the Taiwan Foundation for Rare Disorders. On my return
flight, I began to speak with the passenger in the seat next to mine, a
resident of Taipei. He told me that he had once lived in Bethesda. I
asked him what brought him back to Taiwan. He said, ``I'm a research
scientist, an oncologist. I used to work at NIH. The research money
dried up in the United States. It's flowing in Asia.'' To me, those
four short sentences sum up the dangers of allowing a carefully built
infrastructure to decline. Loss of leadership in science today will
mean loss of quality healthcare and business markets tomorrow.
PHA has served the PH community for over 20 years. In 1990, three
PH patients found each other with the help of the National Organization
for Rare Disorders and shortly thereafter founded PHA. At that time,
the condition was largely unknown amongst the general public and within
the medical community; there were fewer than 200 diagnosed cases of the
disease. Since then, PHA has grown into a nationwide network of over
20,000 members and supporters, including over 230 support groups across
the country.
PHA is dedicated to improving treatment options and finding cures
for PH, and supporting affected individuals through coordinated
research, education, and advocacy activities. Since 1996, nine
medications for the treatment of PH have been approved by the Food and
Drug Administration (FDA), eight of those since 2001. These innovative
treatment options represent important steps forward in the medical
understanding of PH and the care of PH patients, but more needs to be
done to end the suffering caused by this disease.
PH is a debilitating and often fatal condition where the blood
pressure in the lungs rises to dangerously high levels. In PH patients,
the walls of the arteries that take blood from the right side of the
heart to the lungs thicken and constrict. As a result, the right side
of the heart has to pump harder to move blood into the lungs, causing
it to enlarge and ultimately fail. Symptoms of PH include shortness of
breath, fatigue, chest pain, dizziness and fainting.
I would like to extend my sincere gratitude to the Subcommittee for
your historic support of PH programs at HRSA, CDC, and NIH. Thanks to
your leadership, the PH research portfolio at NIH has advanced and
improved our understanding of the disease, and awareness of PH by the
general public has led to earlier diagnosis and improved health
outcomes for patients. Please continue to support PH activities moving
forward.
Health Resources and Services Administration
PHA joins the other voluntary patient and medical organizations
comprising the public health community in requesting that you support
HRSA by providing the agency with an appropriation of $7 billion in
fiscal year 2013. Such a funding increase would allow the agency to
implement a PH education and awareness campaign focused on healthcare
providers, and take on activities that would improve health outcomes
for PH patients who rely on heart or lung transplantation.
PHA has had a very successful partnership with HRSA's ``Gift of
Life'' Donation Program in recent years. Collectively, we have worked
to increase organ donation rates and raise awareness about the need for
PH patients to ``early list'' on transplantation waiting lists. For
fiscal year 2013, PHA recommends an appropriation of $26 million for
this important program. Furthermore, we ask for your support in
encouraging HRSA, specifically the United Network for Organ Sharing, to
engage in active and meaningful dialogue with medical experts at the
REVEAL Registry. Such a dialogue has the potential to improve the
methodology used to determine lung transplantation eligibility for PH
patients and to improve survivability and health outcomes following a
transplantation procedure.
Centers for Disease Control and Prevention
PHA joins the other voluntary patient and medical organizations
comprising the public health community in requesting that you support
CDC by providing the agency with an appropriation of $7.8 billion in
fiscal year 2013. Such a funding increase would allow CDC to undertake
critical PH education and awareness activities, which would promote
early detection and appropriate intervention for PH patients.
We are grateful to the Subcommittee for providing past support of
PHA's Pulmonary Hypertension Awareness Campaign. We know for a fact
that Americans are dying due to a lack of awareness of PH and a lack of
understanding about the many new treatment options. This unfortunate
reality is particularly true among minority and underserved populations
and citizens in rural areas remote from medical centers with PH
expertise. More needs to be done to educate both the general public and
healthcare providers if we are to save lives.
To that end, PHA has utilized the funding provided through the CDC
to (1) launch a successful media outreach campaign focusing on both
print and online outlets, (2) expand our support programs for
previously underserved patient populations, and (3) establish PHA
Online University, an interactive curriculum-based website for medical
professionals that targets pulmonary hypertension experts, primary care
physicians, specialists in pulmonology/cardiology/rheumatology, and
allied health professionals. The site is continually updated with
information on early diagnosis and appropriate treatment of pulmonary
hypertension. It serves as a center point for discussion among PH-
treating medical professionals and offers Continuing Medical Education
and CEU credits through a series of online classes.
In fiscal year 2013, we ask the Subcommittee to encourage CDC to
partner with us once again to collaborate on and support PH education
and awareness activities. This would make a tremendous difference in
the fight against this devastating disease.
National Institutes of Health
PHA joins the other voluntary patient and medical organizations
comprising the public health community in requesting that you support
NIH by providing the agency with an appropriation of $32 billion in
fiscal year 2013. This modest 4 percent funding increase would ensure
that biomedical research inflation does not result in a loss of
purchasing power at NIH, critical new initiatives like the Cures
Acceleration Network (CAN) are adequately supported, and the PH
research portfolio can continue to progress.
Less than two decades ago, a diagnosis of PH was essentially a
death sentence, with only one approved treatment for the disease.
Thanks to advancements made through the public and private sector,
patients today are living longer and better lives with a choice of nine
FDA approved medications. Sustained investment in basic, translational,
and clinical research can ensure that we capitalize on recent
advancement and emerging opportunities to speed the discovery of
improved treatment option and cures.
Expanding clinical research remains a top priority for patients,
caregivers, and PH investigators. We are particularly interested in
establishing a pulmonary hypertension research network. Such a network
would link leading researchers around the United States, providing them
with access to a wider pool of shared patient data. In addition, the
network would provide researchers with the opportunities to collaborate
on studies and to strengthen the connections between basic and clinical
science in the field of pulmonary hypertension research. Such a network
is in the tradition of the NHLBI, which, to its credit and to the
benefit of the American public, has supported numerous similar networks
including the Acute Respiratory Distress Syndrome Network and the
Idiopathic Pulmonary Fibrosis Clinical Research Network. We ask that
you provide NHLBI with sufficient resources and encouragement to move
forward with the establishment of a PH network in fiscal year 2013.
We applaud the recent establishment of the National Center for
Advancing Translational Sciences (NCATS) at NIH. Housing translational
research activities at a single Center at NIH will allow these programs
to achieve new levels of success. Initiatives like CAN are critical to
overhauling the translational research process and overcoming the
research ``valley of death'' that currently plagues treatment
development. In addition, new efforts like taking the lead on drug
repurposement hold the potential to speed new treatment to patients,
particularly patients who struggle with rare or neglected diseases. We
ask that you support NCATS and provide adequate resources for the
Center in fiscal year 2013.
Social Security Administration
We would like to thank the Subcommittee for its commitment to
addressing the longstanding backlog of disability claims at the Social
Security Administration (SSA). We greatly appreciate this investment as
a growing number of our patients are applying for disability coverage.
Recently, SSA convened an Institute of Medicine (IOM) panel to
recommend revisions to the disability criteria for cardiovascular
diseases. The IOM worked closely with our medical experts to update the
disability criteria for our patient population and we were pleased to
receive their recommendations last year. As we continue to work with
SSA on this important effort, we encourage Congress to continue to
support this process moving forward.
On a related note, we continue to applaud SSA for their leadership
of the Compassionate Allowances Initiative (CAL), which seeks to speed
the process of accessing disability benefits for patients diagnosed
with serious conditions that undoubtedly leave them disabled. Last
year, CAL concluded its initial roll out by reviewing conditions and
designating a list of 113 as ``compassionate allowances.'' While we
understand CAL will continue to designate conditions as compassionate
allowances moving forward, it is unclear what this process will be now
that the initial program roll out has concluded. We encourage you to
work with CAL and stakeholder organizations to lay out the process for
expansion of this important initiative moving forward.
Thank you for your time and your consideration of our requests.
Please contact me if you have any questions or if you require any
additional information.
______

Prepared Statement of Research!America
Thank you, Chairman Harkin and Ranking Member Shelby, for the
opportunity to submit testimony regarding fiscal year 2013
appropriations under the jurisdiction of the Subcommittee on Labor,
Health and Human Services, Education, and Related Agencies. Our
testimony will highlight the strength of public support for increased
funding of several agencies within the Department of Health and Human
Services (DHHS): the National Institutes of Health (NIH), the Centers
for Disease Control and Prevention (CDC), and the Agency for Healthcare
Research and Quality (AHRQ)--agencies that play an essential role in
advancing health, fueling business development and job growth, and
combating spiraling healthcare costs.
Research!America appreciates the subcommittee's past support for
research conducted and supported by NIH, CDC and AHRQ. We appreciate
that NIH received a budget increase in fiscal year 2012. Unfortunately,
CDC and AHRQ received budget cuts, muting the capacity of these
agencies to contribute to our Nation's research enterprise and fulfill
other facets of their crucial missions.
It is counterproductive to discontinue our Nation's long-standing
commitment to strong and sustained investments in research for health.
Studies have shown that health research is a tool with the unique, dual
capability of growing the economy and reducing Federal healthcare
costs. And for research to be effective, it must be sustained. Progress
is an iterative process that requires consistent support. We urge the
subcommittee to provide funding increases for NIH, CDC and AHRQ,
preventing further erosion in their capabilities and enabling them to
continue to contribute meaningfully to the health and economic well-
being of Americans.
In January 2013, the sequester is scheduled to be triggered, which
would have a disastrous impact on these agencies, the health of
Americans and our economy. NIH alone would stand to lose billions in
funding, most of which is used to support extramural grants at
institutions in every State. Such dramatic cuts would greatly hamper
medical innovation, depriving patients of new potential cures and
treatments. New investigators are already facing unprecedented
challenges in receiving funding--a situation that would become even
more dire in the face of a sequester. Virtually stagnant funding for
health research has already diminished our Nation's global
competiveness, and the sequester may result in the United States
forfeiting its role as the world leader in research for health.
Each agency plays a unique role in promoting the best interests of
our Nation:
--Research funded by the National Institutes of Health at
universities, academic medical centers, independent research
institutions and small businesses across the country lays the
foundation for new products development by the private sector.
Since much of the research NIH supports is at the non-
commercial stages of the research pipeline, NIH funding does
not compete with, but rather sets the stage for, critical
private sector investment and development. Recent studies have
demonstrated that the NIH is an immense driver of job creation
and economic development in every State. One study found that
the NIH supported 432,000 jobs in 2011 alone.\1\ Overall,
Federal and private investments are complementary funding
streams that lead to business development, job growth and
beneficial medical advances. Taxpayer-funded research through
the NIH has allowed us to convert HIV/AIDS from a death
sentence to a treatable chronic disease; has reduced the costly
toll of premature heart disease death and disability and made
childhood cancers treatable diagnoses; the secrets of diabetes,
Alzheimer's, Parkinson's and host of cancers and many other
diseases can and will be unlocked by science--the question is
not if but when we will achieve our goals in these arenas.
Whether viewed through the lens of advancing the health, well-
being and longevity of Americans or of gaining control over
health spending that is driving up the Federal budget,
overcoming these health threats must remain a top priority.
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\1\ United for Medical Research. NIH's Role in Sustaining the U.S.
Economy A 2011 Update. http://www.unitedformedicalresearch.com/wp-
content/uploads/2012/03/NIHs-Role-in-Sustaining-the-US-Economy-
2011.pdf.
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--The Centers of Disease Control and Prevention engage in research
that stems deadly and costly pandemics, bolsters our Nation's
defenses against bioterrorism, and helps prevent the onset of
debilitating and expensive diseases. The CDC is the Nation's
first responder to lethal viruses and infections, including
life-threatening and costly drug-resistant infections that pose
a particular threat to children and young adults, as well as
investigating tragic phenomena like cancer clusters. Due to
cuts in recent years, the CDC is functioning with one hand tied
behind its back, even as health challenges like the obesity
epidemic, autism and infectious disease outbreaks capture
headlines and ruin lives.
--Research supported by the Agency for Healthcare Research and
Quality identifies inefficiencies in healthcare delivery that
inflate the cost of public and private insurance. AHRQ-
supported research also improves the quality of care to help
reduce the length and intensity of disability and disease, and
helps patients and physicians make informed treatment
decisions, improving outcomes and reducing costly ``false
starts'' in the provision of healthcare services. Given the
enormity of the challenge of inefficiency in healthcare
delivery, AHRQ is severely under-powered.
As national polling commissioned by Research!America in October
2011 demonstrates, the American public strongly supports robust
investment in research to improve health. The poll, which surveyed a
nationwide mix of self-described conservatives (36.8 percent), liberals
(27.9 percent) and moderates (35.3 percent), found that:
--86 percent of Americans say that investing in health research is
important to job creation and economic recovery;
--77 percent of Americans think the United States is losing its
global competitive edge in science, technology and innovation;
--50 percent of Americans would be willing to pay higher taxes if
they were certain that all of the money would be spent on
additional medical research;
--78 percent of Americans say the United States is not spending
enough of our healthcare dollars on research;
--58 percent of Americans believe we are not making enough progress
in medical research in the United States;
--79 percent of Americans agree with the following statement: ``Even
if it brings no immediate benefits, basic scientific research
that advances the frontiers of knowledge is necessary and
should be supported by the Federal Government'';
--92 percent of Americans say it is important that our Nation
supports research that focuses on how well the healthcare
system is functioning;
--82 percent of Americans say that the Government should play a role
in prevention research; and
--54 percent of Americans say research to improve health is part of
the solution to rising healthcare costs.
These findings bear out some important points:
--Americans not only value medical research that leads directly to
advances in healthcare, they appreciate the importance of basic
research that lays the groundwork for these discoveries, as
well as health research, which focuses on such goals as
improving healthcare delivery and identifying effective
prevention strategies.
--Americans recognize that our Nation's hold on global leadership in
the R&D arena is precarious. Our leadership position will
evaporate if policymakers shortchange Government investment in
the basic research and development that fuels private sector
innovation. As it stands, China, Brazil and India are rapidly
increasing investments in R&D, while the United States invests
less than 3 percent of its GDP.
--Americans know that our Nation's best weapon against spiraling
healthcare costs is research. Ignoring growing healthcare costs
is a ticket to disaster. Alzheimer's disease alone is projected
to cost the Federal Government trillions of dollars over the
next 20 years. Ultimately, we must prevent and cure disease in
order to tackle the costs associated with it.
Beyond research focused on domestic health issues, Americans
strongly support global health research. Some 78 percent of Americans
say that it is important that the United States work to improve health
globally through research and innovation. Compassion and common sense
converge in the global health R&D arena. Tuberculosis alone represents
a major humanitarian crisis, taking 1.8 million lives a year and
leaving countless orphans and widows.
In addition to the ethical imperative driving global health R&D,
such research benefits our troops abroad and is an investment in the
health of Americans. International travel means that it is not a matter
of if, but when, deadly global threats, such as multiple-drug resistant
tuberculosis, reach the United States. Every year, 60 million Americans
travel to other countries and 50 million people from abroad travel to
the United States.\2\ In an interconnected world, U.S. global health
research saves lives at home and abroad. And like domestically focused
research, global health research conducted in the United States drives
new businesses and new jobs. Further, major global health threats
individually and collectively represent one of the most significant
destabilizing forces in the developing world. Diseases like HIV/AIDS,
tuberculosis and malaria take the lives of tens of millions working-
aged adults in developing countries, leaving poverty and social and
political instability in their wake. Ultimately, global health is a
global security, global development and global humanitarian assistance
issue. Reducing the burden of disease in developing countries is a
stabilization strategy that can save millions of precious lives and
hundreds of billions of dollars going forward.
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\2\ ITA (International Trade Administration), Office of Travel and
Tourism Industries, ``Total International Travelers Volume to and from
the U.S. 1995-2005,'' available online at http://tinet.ita.doc.gov/
outreachpages/inbound.total_intl_travel_volume_1995-2005.html.
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There are few Federal investments that confer as many benefits as
research to improve health--new cures, new businesses, new jobs, new
answers to spiraling healthcare costs, new tools to promote
humanitarian and national security goals, and new fuel to drive U.S.
leadership in a global economy increasingly shaped by the ability of
competitor countries to continuously innovate.
Research!America appreciates the difficult task facing the
subcommittee as it seeks to simultaneously confront the budget deficit,
strengthen the United States and promote the well-being of Americans.
We firmly believe that investing in NIH, CDC, and AHRQ is a means of
advancing all three of these fundamental goals.
Thank you, Mr. Chairman, Ranking Member Shelby, and members of the
subcommittee.
______

Prepared Statement of the Research Working Group of the Federal AIDS
Policy Partnership
Chairman Harkin, Ranking Member Shelby and members of the
Committee, thank you for the opportunity to provide testimony on the
National Institutes of Health (NIH) budget overall and for AIDS
research in fiscal year 2013. Tomorrow's scientific and medical
breakthroughs depend on your vision, leadership and commitment towards
robust NIH funding over the next year. To this end, the Research
Working Group (RWG) urges this Committee to support--at minimum--the
President's NIH budget request and also recommends a funding target of
$35 billion in fiscal year 2013 to maintain the U.S.'s position as the
world leader in medical research and innovation.
Investments in health research via NIH have paid enormous dividends
in the health and well-being of people in the United States and around
the world. NIH funded HIV and AIDS research has supported innovative
basic science for better drug therapies, evidence-based behavioral and
biomedical prevention interventions and promising vaccine candidates
which have saved and improved the lives of millions and holds great
promise for significantly reducing HIV infection rates and providing
more effective treatments for those living with HIV/AIDS in the coming
decade.
Despite these advances, the number of new HIV/AIDS cases continues
to rise in various populations in the United States and around the
world. There are over 1 million HIV-infected people in the United
States, the highest number in the epidemic's 31-year history;
additionally over 56,000 Americans become newly infected every year.
The evolving HIV epidemic in the United States disproportionately
affects the poor, sexual and racial minorities and the most
disenfranchised and stigmatized members of our communities. Globally,
around 34 million people are living with HIV; 3.4 million of them are
children.\1\ However, with proper funding coupled with the promotion of
evidence based policies, 2012 will be a time of great scientific
progress in prevention science, vaccines and finding a cure for HIV as
well as addressing the co-morbid illnesses that affect patients with
HIV such as viral hepatitis and tuberculosis. Further, as Washington,
DC is set to host the International AIDS Conference this summer, the
gains in science made by NIH funded research programs will reflect our
preeminence as the world's most powerful research enterprise fighting
this deadly global epidemic.
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\1\ http://www.avert.org/worlstatinfo.htm.
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Major advances over the last 2 years in HIV prevention
technologies--in particular with microbicides, HIV vaccines,
circumcision, antiretroviral treatment as prevention and pre exposure
prophylaxis using antiretrovirals (PrEP)--demonstrate that adequately
resourced NIH programs can transform our lives. Federal support for
AIDS research has also led to new treatments for other diseases,
including cancer, heart disease, Alzheimer's, hepatitis, osteoporosis
and a wide range of autoimmune disorders. Over the years, NIH has
sponsored the evaluation of a host of HIV vaccine candidates, some of
which are advancing to efficacy trials. The recent successful iPrEx and
HPTN 052 trials have shown the potential of antiretroviral drugs to
prevent HIV infection. Moreover increased funding will support the
future testing of new microbicides and therapeutics in the pipeline via
the implementation of a newly restructured, cross-cutting HIV clinical
trials network which translates NIH-funded scientific innovation into
critical quality of life gains for those most affected with HIV. The
ultimate goal of a cure for HIV infection increasingly seems within
reach based on scientific advances facilitated by NIH funding. Several
major new NIH-supported projects are underway and they have helped spur
international efforts to secure additional non-NIH financing and create
a global strategy for HIV cure-related research.
Increased funding for NIH in fiscal year 2013 makes good bipartisan
economic sense, especially in shaky times. Robust funding for NIH
overall will enable research universities to pursue scientific
opportunity, advance public health, and create jobs and economic
growth. In every State across the country, the NIH supports research at
hospitals, universities, private enterprises and medical schools. This
includes the creation of jobs that will be essential to future
discovery. Sustained investment is also essential to train the next
generation of scientists and prepare them to make tomorrow's HIV
discoveries. NIH funding puts 350,000 scientists to work at research
institutions across the country. According to NIH, each of its research
grants creates or sustains six to eight jobs and NIH supported research
grants and technology transfers have resulted in the creation of
thousands of new independent private sector companies. NIH Director
Francis Collins has stated that for every dollar invested in NIH
research generates more than $2 for that local community within the
same year.\2\ Strong, sustained NIH funding is a critical national
priority that will foster better health and economic revitalization.
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\2\ NIH Fiscal Year 2012 Congressional Budget Justification. http:/
/officeofbudget.od.nih.gov/pdfs/FY12/Volume%201%20-%20Overview.pdf.
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Let's not jeopardize our future. Since 2003, funding for the NIH
has failed to keep up with our existing research needs--damaging the
success rate of approved grants and leaving very little money to fund
promising new research. The real value of the increases prior to 2003
has been precipitously reduced because of the relatively higher
inflation rate for the cost of research and development activities
undertaken by NIH. According to the Biomedical Research and Development
Price Index--which calculates how much the NIH budget must change each
year to maintain purchasing power--between fiscal year 2003 and fiscal
year 2011, the cost of NIH activities according to the BRDI will have
increased by 32.8 percent. By comparison, the overall budget of the NIH
increased by $3.6 billion or 13.4 percent over fiscal year 2003. So in
real terms, the NIH has already sustained budget decreases of close to
20 percent over the past 9 years due to inflation alone. As such, any
further cuts to NIH will have the clear and devastating effects of
undermining our Nation's leadership in health research and our
scientists' ability to take advantage of the expanding opportunities to
advance healthcare at home and around the world. The race to find
better treatments and a cure for cancer, heart disease, AIDS and other
diseases, and for controlling global epidemics like AIDS, tuberculosis
and malaria, all depend on a robust long term investment strategy for
health research at NIH.
In conclusion, the RWG calls on Congress to sustain what has been a
bipartisan Federal commitment toward combating HIV as well as other
chronic and life threatening illnesses by increasing funding for NIH to
$35 billion in fiscal year 2013. A meaningful commitment toward
stemming the epidemic and securing the well being of people with HIV
cannot be met without prioritizing the research investment at NIH that
will lead to tomorrow's lifesaving vaccines, treatments and cures.
Thank you for the opportunity to provide these comments.
______

Prepared Statement of the Ryan White Medical Providers Coalition
Introduction
I am Dr. Jim Raper, an HIV medical provider and Director of the
1917 Clinic, a comprehensive HIV clinic funded in part by Part C of the
Ryan White Program at the University of Alabama at Birmingham. I am
submitting written testimony on behalf of the Ryan White Medical
Providers Coalition.
Thank you for the opportunity to discuss the important HIV/AIDS
care conducted at Ryan White Part C funded programs nationwide.
Specifically, the Ryan White Medical Providers Coalition, the HIV
Medicine Association, the CAEAR Coalition, and the American Academy of
HIV Medicine estimate that approximately $461 million is needed to
provide the standard of care for all Part C program patients. (This
estimate is based on the current cost of care and the number of
patients that Part C clinics serve.) Because these are exceptionally
challenging economic times, we request $285.8 million for Ryan White
Part C programs in fiscal year 2013, the authorized amount that
Congress legislated for Part C programs in its 2009 reauthorization of
the Ryan White Program.
The Ryan White Medical Providers Coalition was formed in 2006 to be
a voice for medical providers across the Nation who deliver quality
care to their patients through Part C of the Ryan White program. We
represent every kind of program, from small and rural to large urban
sites in every region in the country, and we advocate for a full range
of primary care services for patients living with HIV.
Adequate funding for Part C of the Ryan White Program is essential
to providing both effective and efficient care for individuals living
with HIV/AIDS, and we thank the Subcommittee for its support of the
Ryan White Part C Program in fiscal year 2012. And while we also are
grateful for the $15 million in additional funding that the
administration invested in Part C programs in honor of World AIDS Day
2011 and its request to invest additional funding in fiscal year 2013,
the economic pressures that Part C clinics face in order to serve all
patients requesting HIV care and treatment remain significant.
HIV Treatment is HIV Prevention: Part C Programs Save Both Lives and
Money
Investing in Part C services improves lives and saves money. Part C
of the Ryan White Program funds comprehensive HIV care and treatment,
services that are directly responsible for the dramatic decreases in
AIDS-related mortality and morbidity over the last decade. Part C
providers serve over 255,000 patients with HIV/AIDS per year, or over
half of the individuals in regular care and treatment.
The Ryan White Program has supported the development of expert HIV
care and treatment programs that provide medical homes for patients
with this serious, chronic condition. In 2011, a ground-breaking
clinical trial (HPTN 052)--named the scientific breakthrough of the
year by Science magazine--found that HIV treatment not only saves
patient lives, but also reduces HIV transmission by more than 96
percent--proving that HIV treatment is also HIV prevention.
Now is the time to support the comprehensive medical care provided
by Ryan White Part C clinics to save lives and better address the HIV
epidemic in the United States. Early and reliable access to HIV care
and treatment both helps patients with HIV live relatively healthy and
productive lives and is more cost effective. One study from my Part C
clinic at the University of Alabama at Birmingham found that patients
treated at the later stages of HIV disease required 2.6 times more
healthcare dollars than those receiving earlier treatment meeting
Federal HIV treatment guidelines.
Additionally, in the face of the potentially significant expansion
of healthcare coverage for low income Americans through the Affordable
Care Act, maintaining the infrastructure and expertise of Ryan White
Part C programs is particularly important because these centers of
excellence will help keep patients engaged in essential HIV care and
treatment while the system around them is transforming.
Patient Loads Are Increasing at an Unsustainable Rate
Patient loads have been increasing at Part C clinics nationwide.
This continued steady increase in patients has occurred on account of
higher diagnosis rates and declining insurance coverage resulting in
part from the economic downturn. The CDC reports that the number of
HIV/AIDS cases increased by 15 percent from 2004 to 2007 in 34
States.\1\
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\1\ Centers for Disease Control and Prevention. HIV/AIDS
Surveillance Report, 2007. Vol. 19. U.S. Department of Health and Human
Services, Centers for Disease Control and Prevention; 2009:5.
www.cdc.gov/hiv/topics/surveillance/resources/reports/.
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Last year in New York, when St. Vincent's Hospital in New York City
closed, a Part C clinic at St. Luke's-Roosevelt Hospital had to absorb
almost the entire St. Vincent's HIV/AIDS clinic, approximately 1,000
patients, over the course of just a few days. Additional clinics have
closed, such as one in Sonoma County, California, and others having
longer wait times for new patient appointments (8 weeks long in some
places). Other programs, such as one Part C clinic in Arizona, are
deciding whether to close their doors to new patients entirely because
of an inability to treat additional patients within existing financial
and HIV workforce resources.
Our patients struggle in times of plenty, and during this economic
downturn they have relied on Part C programs more than ever. While
these programs have been under-funded for years, economic pressures are
creating a crisis. Clinics are discontinuing primary care and other
critical medical services, such as laboratory monitoring; suffering
eviction from their clinic locations; operating only 4 days per week;
and laying off staff just to get by. Years of nearly flat funding
combined with large increases in the patient population and the recent
economic crisis are negatively impacting the ability of Part C
providers to serve their patients.
The following graph demonstrates the growing disparity between
funding for Part C and the increasing patient population. I refer to
this gap between funding and patients as the ``Triangle of Misery''
because it represents the thousands of patients in HIV/AIDS care and
treatment and the Part C programs nationwide that are struggling to
serve them with extremely limited resources.
The Triangle of Misery: Part C Caseload Increases Outpace Funding
Increases 7 to 1

Conclusion
These are challenging economic times, and we recognize the severe
fiscal constraints Congress faces in allocating limited Federal
dollars. The significant financial and patient pressures that we face
in our clinics at home propel us to make the request for $285.8 million
in fiscal year 2013 funding for Ryan White Part C programs. This
funding would help to support medical providers nationwide in
delivering life-saving, effective HIV/AIDS care and treatment to their
patients.
Thank you for your time and consideration of our request. If you
have any questions, please do not hesitate to contact the Ryan White
Medical Providers Coalition Convener, Jenny Collier, at
[email protected].
______

Prepared Statement of the Spina Bifida Association
Background and Overview
On behalf of the estimated 166,000 individuals and their families
who are affected by all forms of Spina Bifida--the Nation's most
common, permanently disabling birth defect--Spina Bifida Association
(SBA) appreciates the opportunity to submit public written testimony
for the record regarding fiscal year 2013 funding for the National
Spina Bifida Program and other related Spina Bifida initiatives. SBA is
a national patient advocacy organization, working on behalf of people
with Spina Bifida and their families through education, advocacy,
research and service. SBA stands ready to work with Members of Congress
and other stakeholders to ensure our Nation mounts and sustains a
comprehensive effort to reduce and prevent suffering from Spina Bifida.
Spina Bifida, a neural tube defect (NTD), occurs when the spinal
cord fails to close properly 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 increasingly becomes 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 occurring 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 NTD is that most people 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 seeks to ameliorate their condition by
helping to relieve cranial pressure associated with spinal fluid that
does not flow properly. As we have testified previously, the good news
is that after decades of poor prognoses and short life expectancy,
children with Spina Bifida are now living into adulthood and
increasingly into their advanced years. These gains in longevity,
principally, are due to breakthroughs in research, combined with
improvements generally in healthcare and treatment. However, with this
extended life expectancy, our Nation and people with Spina Bifida now
face new challenges, such as transitioning from pediatric to adult
healthcare providers, education, job training, independent living,
healthcare for secondary conditions, and aging concerns, among others.
Individuals and families affected by Spina Bifida face many
challenges--physical, emotional, and financial. Fortunately, with the
creation of the National Spina Bifida Program in 2003, individuals and
families affected by Spina Bifida now have a national resource that
provides them with the support, information, and assistance they need
and deserve.
As is discussed below, the daily consumption of 400 micrograms of
folic acid by women of childbearing age, prior to becoming pregnant and
throughout the first trimester of pregnancy, can help reduce the
incidence of Spina Bifida, by up to 70 percent. The Centers for Disease
Control and Prevention (CDC) calculates that there are approximately
3,000 NTD births each year, of which an estimated 1,500 are Spina
Bifida, and, as such, with the aging of the Spina Bifida population and
a steady number of affected births annually, the Nation must take
additional steps to ensure that all individuals living with this
complex birth defect can live full, healthy, and productive lives.
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. Efforts to reduce and
prevent suffering from Spina Bifida will help to not only save money,
but will also save--and improve--lives.
Improving Quality-of-Life through the National Spina Bifida Program
Since 2001, SBA has worked with Members of Congress and staff at
the CDC to help improve our Nation's efforts to prevent Spina Bifida
and diminish suffering--and enhance quality-of-life--for those
currently living with this condition. With appropriate, affordable, and
high-quality medical, physical, and emotional care, most people born
with Spina Bifida will likely have a normal or near normal life
expectancy. The CDC's 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 National Spina Bifida Program established the National Spina
Bifida Resource Center housed at the SBA, which provides information
and support to help ensure that individuals, families, and other
caregivers, such as health professionals, have the most up-to-date
information about effective interventions for the myriad primary and
secondary conditions associated with Spina Bifida. Among many other
activities, the program helps individuals with Spina Bifida and their
families learn how to treat and prevent secondary health problems, such
as bladder and bowel control difficulties, learning disabilities,
depression, latex allergies, obesity, skin breakdown, and social and
sexual issues. Children with Spina Bifida often have learning
disabilities and may have difficulty with paying attention, expressing
or understanding language, and grasping reading and math. All of these
problems can be treated or prevented, but only if those affected by
Spina Bifida--and their caregivers--are properly educated and given the
skills and information they need to maintain the highest level of
health and well-being possible. The National Spina Bifida Program's
secondary prevention activities represent a tangible quality-of-life
difference to the estimated 166,000 individuals living with all forms
of Spina Bifida, with the goal being living well with Spina Bifida.
An important resource to better determine best clinical practices
and the most cost effective treatments for Spina Bifida is the National
Spina Bifida Registry, now in its third year. A total of 19 sites
throughout the Nation are collecting patient data, which supports the
creation of quality measures and will assist in improving clinical
research that will truly save lives, while also realizing a significant
cost savings.
SBA understands that the Congress and the Nation face unprecedented
budgetary challenges. However, the progress being made by the National
Spina Bifida Program must be sustained to ensure that people with Spina
Bifida--over the course of their lifespan--have the support and access
to quality care they need and deserve. To that end, SBA respectfully
urges the Subcommittee to Congress allocate $6.25 million in fiscal
year 2013 to the program, so it can continue and expand its current
scope of work; further develop the National Spina Bifida Patient
Registry; and sustain the National Spina Bifida Resource Center.
Sustaining 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--and the costs of--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-five
million women of child-bearing age are at-risk of having a child born
with Spina Bifida. As mentioned above, the daily consumption of 400
micrograms of folic acid prior to becoming pregnant and throughout the
first trimester of pregnancy can help reduce the incidence of Spina
Bifida, by up to 70 percent. There are few public health challenges
that our Nation can tackle and conquer by nearly three-fourths in such
a straightforward fashion. However, we must still be concerned with
addressing the 30 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 prior to becoming
pregnant.
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. The good news is
that progress has been made in convincing women of the importance of
folic acid consumption and the need to maintain a diet rich in folic
acid. This public health success should be celebrated, but still too
many women of childbearing age consume inadequate daily amounts of
folic acid prior to becoming pregnant, and too many pregnancies are
still 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.
The goal is to increase awareness of the benefits of folic acid,
particularly 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 continued funding in
fiscal year 2013, CDC's folic acid awareness activities could be
expanded to reach the broader population in need of these public health
education, health promotion, and disease prevention messages. SBA
advocates that Congress provide adequate funding to CDC to allow for a
targeted 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 $6.25 million fiscal year 2013 allocation for the
National Spina Bifida Program, SBA urges the Subcommittee to provide
$2.8 million for the CDC's national folic acid education and promotion
efforts to support the prevention of Spina Bifida and other NTD; $22.3
million to strengthen the CDC's National Birth Defects Prevention
Network; and $137.2 million to fund the National Center on Birth
Defects and Developmental Disabilities.
Sustain and Seize Spina Bifida Research Opportunities
Our Nation has benefited immensely from our past Federal investment
in biomedical research at the NIH. SBA joins with other in the public
health and research community in advocating that NIH receive increased
funding in fiscal year 2013. 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,
SBA respectfully requests that the Subcommittee include the following
language in the report accompanying the fiscal year 2013 LHHS
appropriations measure:

``The Committee encourages NIDDK, NICHD, and NINDS to study the
causes and care of the neurogenic bladder in order to improve the
quality of life of children and adults with Spina Bifida; to support
research to address issues related to the treatment and management of
Spina Bifida and associated secondary conditions, such as
hydrocephalus; and to invest in understanding the myriad co-morbid
conditions experienced by children with Spina Bifida, including those
associated with both paralysis and developmental delay.''
Conclusion
Please know that SBA stands ready to work with the Subcommittee and
other Members of Congress to advance policies and programs that will
reduce and prevent suffering from Spina Bifida. Again, we thank you for
the opportunity to present our views regarding fiscal year 2013 funding
for programs that will improve the quality-of-life for the estimated
166,000 Americans and their families living with all forms of Spina
Bifida.
______

Prepared Statement of the Scleroderma Foundation
The members of the Scleroderma Foundation (SF) are pleased to
submit this statement for the record recommending $32 billion in fiscal
year 2013 for the National Institutes of Health (NIH), and an increase
for the National Institute of Arthritis and Musculoskeletal and Skin
Diseases (NIAMS) concurrent with the overall increase to NIH. The
Scleroderma Foundation also recommends encouraging the Centers for
Disease Control and Prevention to partner with the scleroderma
community in promoting increased awareness of scleroderma among the
general public and healthcare providers.
statement of cynthia cervantes, huntington park, california
Mr. Chairman, I am Cynthia Cervantes, and I am 17 years old. I live
in Southern California and in October 2006 I was diagnosed with
scleroderma. Scleroderma means ``hard skin'' which is literally what
scleroderma does and, in my case, also causes my internal organs to
stiffen and contract. This is called diffuse scleroderma. It is a
relatively rare disorder effecting only about 300,000 Americans. Just
this year I was in the hospital for 4 weeks with intense pain, nausea,
and dizziness. The doctors believe I had an unknown virus but could not
control my symptoms. It was a very frightening time for my family and
I.
About 7 years ago I began to experience sudden episodes of
weakness, my body would ache and my vision was worsening, some days it
was so bad I could barely get myself out of bed. I was taken to see a
doctor after my feet became so swollen that calcium began to ooze out.
It took the doctors months to figure out exactly what was wrong with
me, because of how rare scleroderma is.
There is no known cause for scleroderma, which affects three times
as many women as men. Generally, women are diagnosed between the ages
of 25 and 55, but some kids, like me, are affected earlier in life.
There is no cure for scleroderma, but it is often treated with skin
softening agents, anti-inflammatory medication, and exposure to heat.
Sometimes a feeding tube must be used with a scleroderma patient
because their internal organs contract to a point where they have
extreme difficulty digesting food.
The Scleroderma Foundation has been very helpful to me and my
family. They have provided us with materials to educate my teachers and
others about my disease. Also, the support groups the foundation helps
organize are very helpful because they help show me that I can live a
normal, healthy life, and how to approach those who are curious about
why I wear gloves, even in hot weather. It really means a lot to me to
be able to interact with other people in the same situation as me
because it helps me feel less alone.
Mr. Chairman, because the causes of scleroderma are currently
unknown and the disease is so rare, and we have a great deal to learn
about it in order to be able to effectively treat it. I would like to
ask you to please increase funding for the National Institute of Health
so treatments can be found for other people like me who suffer from
scleroderma. It would also be helpful to start a program at the Centers
for Disease Control and Prevention to educate the public and physicians
about scleroderma.
overview of the scleroderma foundation
The Scleroderma Foundation is a nonprofit organization based in
Danvers, Massachusetts with a three-fold mission: support, education,
and research. The Foundation provides support for people living with
scleroderma and their families through programs such as peer
counseling, doctor referrals, and educational information, along with a
toll-free telephone helpline for patients.
The Foundation also provides education about the disease to
patients, families, the medical community, and the general public
through a variety of awareness programs at both the local and national
levels. Over $1 million in peer-reviewed research grants are awarded
annually to institutes and universities to stimulate progress in the
search for a cause and cure for scleroderma.
who gets scleroderma?
There are many clues that define the susceptibility to develop
scleroderma. A genetic basis for the disease has been suggested by the
fact that it is more common among patients whose family members have
other autoimmune diseases (such as lupus). In rare cases, scleroderma
runs in families, although for the vast majority of patients there is
no other family member affected. Some Native Americans and African
Americans suffer a more severe form of the disease Caucasians. Women
between the ages of 25-55 are more likely to develop scleroderma.
causes of scleroderma
The cause of scleroderma is unknown. However, we do understand a
great deal about the biological processes involved. In localized
scleroderma, the underlying problem is the overproduction of collagen
(scar tissue) in the involved areas of skin. In systemic sclerosis,
there are three processes at work: blood vessel abnormalities, fibrosis
(which is overproduction of collagen) and immune system dysfunction, or
autoimmunity.
research
Scleroderma research at the NIH was funded at a level of $25
million in fiscal year 2012. This is of great concern to scleroderma
patients and families who view biomedical research as their best hope
for an enhanced quality of life. It is also of great concern to our
researchers who have promising ideas they would like to explore if
resources were available.
types of scleroderma
There are two main forms of scleroderma: systemic (systemic
sclerosis, SSc) that usually affects the internal organs or internal
systems of the body as well as the skin, and localized that affects a
local area of skin either in patches (morphea) or in a line down an arm
or leg (linear scleroderma), or as a line down the forehead
(scleroderma en coup de sabre). It is very unusual for localized
scleroderma to develop into the systemic form.
Systemic Sclerosis (SSc)
There are two major types of systemic sclerosis or SSc: limited
cutaneous SSc and diffuse cutaneous SSc. In limited SSc, skin
thickening only involves the hands and forearms, lower legs and feet.
In diffuse cutaneous disease, the hands, forearms, the upper arms,
thighs, or trunk are affected.
People with the diffuse form of SSc are at risk of developing
pulmonary fibrosis (scar tissue in the lungs that interferes with
breathing, also called interstitial lung disease), kidney disease, and
bowel disease. The risk of extensive gut involvement, with slowing of
the movement or motility of the stomach and bowel, is higher in those
with diffuse rather than limited SSc. Symptoms include feeling bloated
after eating, diarrhea or alternating diarrhea and constipation.
Pulmonary Hypertension (PH) is high blood pressure in the blood
vessels of the lungs. It is totally independent of the usual blood
pressure that is taken in the arm. This tends to develop in patients
with limited SSc after several years of disease. The most common
symptom is shortness of breath on exertion. However, several tests need
to be done to determine if PH is the real culprit. There are now many
medications to treat PH.
Localized Scleroderma
Morphea
Morphea consists of patches of thickened skin that can vary from
half 1 inch to 6 inches or more in diameter. The patches can be lighter
or darker than the surrounding skin and thus tend to stand out.
Morphea, as well as the other forms of localized scleroderma, does not
affect internal organs.
Linear scleroderma
Linear scleroderma consists of a line of thickened skin down an arm
or leg on one side. The fatty layer under the skin can be lost, so the
affected limb is thinner than the other one. In growing children, the
affected arm or leg can be shorter than the other.
______

Prepared Statement of the Society of Gynecologic Oncology
The Society of Gynecologic Oncology (SGO) thanks the Subcommittee
for the opportunity to submit comments for the record regarding SGO's
fiscal year 2013 funding recommendations for the National Institutes of
Health and the National Cancer Institute. We believe these
recommendations are critical to ensure that advances can be made to
help reduce and prevent suffering from gynecologic cancer.
The SGO is a national medical specialty organization of physicians
who are trained in the comprehensive management of women with
malignancies of the reproductive tract. Our purpose is to improve the
care of women with gynecologic cancer by encouraging research,
disseminating knowledge which will raise the standards of practice in
the prevention and treatment of gynecologic malignancies and
cooperating with other organizations interested in women's healthcare,
oncology and related fields. The Society's membership, totaling more
than 1,600, is comprised of gynecologic oncologists, as well as other
related women's cancer healthcare specialists including medical
oncologists, radiation oncologists, nurses, social workers and
pathologists. SGO members provide multidisciplinary cancer treatment
including surgery, chemotherapy, radiation therapy, and supportive
care. More information on the SGO can be found at www.sgo.org.
Each day in the United States, one woman will be diagnosed with a
gynecologic cancer every 7 minutes. That's over 200 women today and
close to 80,000 this year. One-third of these women will die
unnecessarily. If detected early, the vast majority of these cancers
are curable. The SGO believes that Congress can take action to save the
lives of thousands of our mothers, sisters, and daughters who die each
year from gynecologic cancer, starting with this Subcommittee making a
commitment to increase the funding in fiscal year 2013 for Federal
research programs focused on education, prevention, screening and
treatment of gynecologic cancers.
Now is not the time to cut research funding for these devastating
diseases. We must do better for the women of our great Nation.
Therefore, the SGO joins with the broader public health and research
community urging Congress to provide $32.7 billion for the National
Institutes of Health (NIH) in fiscal year 2013. This is the minimal
level of funding that will allow the NIH to maintain current
initiatives and investments.
SGO is aware of the fiscal challenges facing the Subcommittee in
fiscal year 2013; however, more than 10 million cancer survivors can
attest to the fact that when investments are made in cancer research-
related programs thousands of lives are saved. Therefore, the SGO
recommends that this Subcommittee provide the NCI with $5.36 billion
for fiscal year 2013.
Pathways to Progress in Gynecologic Cancer Research
In 2010, the leadership of the SGO organized a Research Summit on
the Pathways to Progress in Women's Cancers. The Summit brought
together gynecologic oncologists, medical oncologists, radiation
oncologists; basic science researchers, epidemiologists, and educators
to assess the landscape of gynecologic cancer research and recommend
strategic goals for the next 10 years.
The strongest priority emerging from the Research Summit was the
need to identify a mechanism to maintain infrastructure for clinical
trials in gynecologic oncology. Two out of three NCI clinical alerts
(``Addition of Cisplatin to Radiation Therapy in Cervical Cancer'', and
``Prolonged Survival in Ovarian Cancer with Intraperitoneal
Chemotherapy'') have been issued as a direct result of the clinical
trials structure in gynecologic oncology. However, it was recognized
that the current clinical trials mechanism must adapt to include novel
agents and new imaging endpoints. The women of America deserve to have
more breakthroughs advanced by well-designed clinical trials research
dedicated to gynecologic cancers.
Prior investment into the infrastructure of tissue banking has
positioned gynecologic oncology research to both contribute to and
benefit from national cancer resources, such as The Cancer Genome Atlas
(TCGA). The Gynecologic Oncology Group (GOG) tissue bank was able to
provide high quality ovarian cancer specimens as one of the first
tissues in the TCGA, followed by endometrial cancers. By leveraging the
TCGA and other resources, sophisticated research questions can begin to
be addressed. These resources may be deployed to answer questions that
cross biologic cancer sites, such as the mechanism of cancer cell
invasion or the molecular markers of cancer initiating cells.
Scientific innovation has provided the promise of personalized
cancer therapies. Certainly, novel agents targeting specific tumor
pathways are one part of personalized medicine. However, that concept
does not encompass the spectrum of both treatment and survivorship,
which is the ultimate goal. For instance, surgical intervention in
endometrial cancer can be curative. But, the side effect of lymphedema
may significantly affect the quality of a woman's life as well as her
economic and social productivity. Women with gynecologic malignancies,
as well as all cancer patients and survivors, deserve personal,
specialized care to identify the essential interventions required at
diagnosis and/or recurrence to maximize quantity and quality of life.
In addition, personalized medicine must utilize multidisciplinary
interventions to modify the overall trajectory of disease and evaluate
their economic impact.
In the past decade, cervical cancer became the first gynecologic
cancer to be successfully prevented by a vaccine, which will continue
to be refined and studied in different populations in for modifiers of
efficacy. Prevention of cancer is also possible in endometrial cancer,
where epidemiologic data supports the role of obesity in the
development of endometrial cancer. Certainly education of the public
about the connection between obesity and endometrial cancer as well as
study of the cancer preventative effects of obesity reduction
strategies, such as bariatric surgery are warranted at this time.
Finally, sustaining a cadre of researchers in gynecologic
malignancies will require resources targeted for women's cancer. While
we anticipate that established national funding mechanisms will fund
our most exciting research, public-private partnerships will become
increasingly important. Previously, a successful partnership between
the Gynecologic Cancer Foundation (GCF, now known as the Foundation for
Women's Cancer) and the NCI provided training in basic science research
for budding gynecologic oncologists. Creation of a similar cross-
disciplinary gynecologic malignancies training grant would enhance the
depth and breadth of researchers in women's cancers. For researchers
already committed to research in women's cancers, private cancer
advocacy groups and professional societies might be able to partner
with the NCI to create a Women's Cancer Bridge Program to sustain such
investigators during a funding shortfall.
Fifteen years ago, the roadmap defined by the ``New Directions in
Ovarian Cancer Research'' conference spurred progress in ovarian cancer
research that has directly affected patient care and saved lives. It is
our hope and confidence that this new ``Pathways to Progress'' research
agenda will prompt similar acceleration in research in all gynecologic
malignancies. The women of America deserve nothing less. To read the
entire `Pathways to Progress in Women's Cancer,'' A Research Agenda
Proposed by the Society of Gynecologic Oncology, please visit the SGO's
website at www.sgo.org.

TABLE E-1.--GYNECOLOGIC MALIGNANCIES RESEARCH PRIORITIES
----------------------------------------------------------------------------------------------------------------
Short (0-3 years) Intermediate (4-6 years) Long (7-10 years)
----------------------------------------------------------------------------------------------------------------
Low Risk.................... 4A1) Maintain 1E1, 1B3, 1B6) Develop new 4F2) Establish
infrastructure for trial endpoints and collaborative teams of
clinical trials in biomarkers through investigators to utilize
gynecologic oncology. imaging and circulating banked specimens for
2E4) Prevalence/QOL trial analytes. gynecologic malignancies
of lymphedema in EC. research.
5A1) Identify the
essential interventions
all cancer survivors
require at diagnosis and/
or recurrence to maximize
quantity and QOL.
Intermediate Risk........... 3D5) Cervical cancer 2E2) Quality outcomes of 2A3) Outcomes research on
health disparities. first surgery by bariatric surgery/EC
3D4) Cervical cancer gynecologic oncologist. risk.
genetic and epigenetic
susceptibility genes
(TCGA).
High Risk................... 2A6) CDC educational 1A1, 1A3, 1A5, 1B2) Define 5G1) Utilize
campaign EC and obesity. the ovarian cancer multidisciplinary
3E1) Progression of CIN3- initiating stem-like cell. interventions to modify
SCC (biology of invasion). 4G2) Promote legislation the overall trajectory of
and regulation at State disease and evaluate
and Federal level for their economic impact.
insurance cost coverage 6I1) Develop a bridge
of clinical trials costs. program to sustain
6H2) Develop and implement investigators who have
a training grant specific lost extramural funding.
to Gynecologic Oncology.
----------------------------------------------------------------------------------------------------------------
CDC Centers for Disease Control; CIN3 Cervical Intraepithelial Neoplasia 3; EC Endometrial Cancer; QOL Quality
of Life; SCC Squamous Cell Carcinoma; TCGA The Cancer Genome Atlas.

The SGO appreciates the opportunity to submit these comments and
again urges this Subcommittee to increase Federal funding to $32.7
billion for the National Institutes of Health (NIH) in fiscal year 2013
and to provide from that at least $5.36 billion for the NCI for fiscal
year 2013.
This will allow for discoveries and research breakthroughs, while
also investing in research infrastructure and training for the next
generations of scientists. It will provide the resources needed for the
implementation of the research agenda for the next decade in
gynecologic cancers. The SGO thanks you for your leadership and the
leadership of the Subcommittee on this issue.
______

Prepared Statement of the Society for Neuroscience
Introduction
Mr. Chairman and Members of the Subcommittee, my name is Moses
Chao, PhD. I am a professor of Cell Biology, Physiology and
Neuroscience, and Psychiatry at the New York University School of
Medicine, and President of the Society for Neuroscience. My major
research efforts have been focused on growth factors (also called
neurotrophins). These proteins are crucial for everything from neuron
differentiation, growth, and survival during development to learning
and memory in children and adults. Deficits in neurotrophins are
involved in neurodegenerative disorders such as Alzheimer's,
Parkinson's and Huntington's diseases, and Amyotrophic Lateral
Sclerosis (ALS) as well as limiting recovery after stroke or brain
injury.
Founded in 1969, SfN has grown from a membership of 500 to more
than 42,000, representing researchers working in more than 80
countries. This rapid growth reflects the tremendous progress made in
understanding brain cell biology, physiology, and chemistry, and the
tremendous potential and importance of this field. Today, the field
sits on the cusp of revolutionary advances, and NIH-funded research has
played an essential role by enabling advances in brain development,
imaging, genomics, circuit function, computational neuroscience, neural
engineering and many other disciplines.
To continue this important work SfN stands with partners in the
medical and scientific community to request at least $32 billion for
NIH in fiscal year 2013. In this testimony, I will highlight how these
advances have benefited taxpayers, and some of the challenges that need
to be addressed to prevent lapsing further behind other nations
throughout the world both scientifically and economically.
What is the Society for Neuroscience?
SfN is a nonprofit membership organization of basic scientists and
physicians who study the brain and nervous system. The SfN mission is
to advance the understanding of the brain and the nervous system by
bringing together scientists of diverse backgrounds, by facilitating
the integration of research directed at all levels of biological
organization, and by encouraging translational research and the
application of new scientific knowledge to develop improved disease
treatments and cures; provide professional development activities,
information, and educational resources for neuroscientists at all
stages of their careers, including undergraduates, graduates, and
postdoctoral fellows, and increase participation of scientists from a
diversity of cultural and ethnic backgrounds; promote public
information and general education about the nature of scientific
discovery and the results and implications of the latest neuroscience
research, and support active and continuing discussions on ethical
issues relating to the conduct and outcomes of neuroscience research;
and inform legislators and other policymakers about new scientific
knowledge and recent developments in neuroscience research and their
implications for public policy, societal benefit, and continued
scientific progress.
What is Neuroscience?
Neuroscience is the study of the nervous system. It advances the
understanding of human function on every level: movement, thought,
emotion, behavior, and much more. Neuroscientists use tools across
disciplines--from biology and computer science to physics and
chemistry--to examine molecules, nerve cells, networks, brain system,
and behavior. Through research, neuroscientists work to understand
normal functions of the brain and determine how the nervous system
develops, matures, and maintains itself through life. This research is
the foundation for preventing, treating or curing more than 1,000
neurological and psychiatric disorders that result in more
hospitalizations in the United States than any other disease group,
including heart disease and cancer. In 2007, the World Health
Organization estimated that neurological disorders affect up to 1
billion people worldwide. In fact, neurological diseases make up 11
percent of the world's disease burden, not including mental health and
addiction disorders.
Neuroscience includes basic, clinical and translational research.
Basic science unlocks the mysteries of the human body by exploring the
structure and function of molecules, genes, cells, systems, and complex
behaviors, and basic science funding at NIH continues to be a
springboard for discoveries that spur medical progress for future
generations.
The following are just three of many emerging stories of important
progress in neuroscience research, and these are based in large part on
strong historic investment in NIH and other research agencies:
Neurotrophic Factors.--Maintaining brain health throughout life is
an important public health goal. Extensive research has demonstrated
that cognitive function can be enhanced with increased levels of Brain-
Derived Neurotrophic Factor (BDNF) and other growth factors. These
proteins are released in the brain with exercise, neuronal activity and
behavioral stimulation, resulting in increased resistance to brain
injury, the birth of new neurons and improved learning and mental
performance. BDNF increases and strengthens the number of connections
in the brain and promotes plasticity, by generating positive signals in
neurons. Depression and anxiety are also influenced by neurotrophic
factors. Future research will define new ways to use the knowledge from
neurotrophic factors to protect the nervous system from damage and
maintain brain function and plasticity during aging.
Epigenetics Research.--Is it ``nature'' or ``nurture'' that
influences behavior and health outcomes? Researchers now know these
factors are not independent: experience and environment (``nurture'')
modify genes (``nature'')--a phenomenon known as epigenetics. Some of
these modifications can be passed to the next generation, suggesting it
may be possible for our life experiences to affect our children and
grandchildren. Recent research finds epigenetics affects normal brain
processes--such as development or memory--and abnormal brain processes
like depression and disease. Emerging studies in people suggest
epigenetics may affect human behavior and be a factor in neurological
and psychiatric disease. One example is Rett syndrome, a genetic
disorder that almost exclusively affects young girls and currently has
no cure, as well as schizophrenia, autism, and Alzheimer's disease.
Also, unlike most genetic mutations, epigenetic marks can be reversed.
In fact, the U.S. Food and Drug Administration have approved several
drugs that work to improve health outcomes by modifying these marks.
Many of these drugs were originally identified by cancer researchers,
and brain scientists are now working to develop safer, more effective
drugs to improve cognitive function and behavior in people--
highlighting the importance of collaboration across scientific
institutes and disciplines and the powerful potential to apply basic
and applied research well beyond its original intent.
Fear and Post-Traumatic Stress Disorder.--In a given year, about
3.5 percent of Americans suffer from post-traumatic stress disorder
(PTSD), a punishing disorder marked by intense fear, anxiety, and
flashbacks that follow a traumatic experience. For U.S. military
personnel returning from Iraq and Afghanistan, the prevalence of PTSD
may be as high as one in five. Until now, there have been few treatment
options for PTSD. However, new basic science and clinical research on
the biological basis of fear suggests promising new therapeutic
avenues. Rat studies determined that those with lesions in a brain
region called the amygdala failed to associate a neutral stimulus, like
a tone, with a fearful event, like a mild shock. Furthermore, people
who had surgery to remove the portion of the temporal lobe that
contains the amygdala, a treatment for some forms of epilepsy, had
difficulty learning to associate a flash of light with an unpleasant
noise. These findings suggest that fear is a special type of learning
and memory.
Rewriting fearful memories or forgetting them altogether might
therefore help conquer fears. But as researchers learn how fear
memories are encoded in the brain, and as animal research helps to
identify new treatments, there may be new therapeutic options. One new
treatment is the antibiotic D-cycloserine. This drug activates
receptors in the amygdala that are important in extinction.
Additionally, drugs called beta blockers are used to treat people with
high blood pressure--they stabilize the body's response to a stressor,
preventing the fight-or-flight response. A recent human study showed
that, when given during recollection of a frightening memory, the beta
blocker propranolol reduced fear but did not affect knowledge of an
event. Researchers are currently evaluating propranolol's ability to
prevent PTSD in trauma patients. These promising results of repurposing
existing drugs would not have been possible without basic scientific
research, funded largely by the NIH, National Science Foundation, and
Department of Defense.
Economic Impact
These and thousands of other studies are advancing our
understanding of the brain and nervous system, and are translating into
potential treatments for patients in the future. Federal investments in
scientific research fuel the Nation's pharmaceutical, biotechnology and
medical device industries. The private sector utilizes basic scientific
discoveries funded through NIH to improve health and foster a
sustainable trajectory for American's Research and Development (R&D)
enterprise. Basic science generates the knowledge needed to uncover the
mysteries behind human diseases, which eventually leads to private
sector development of new treatments and therapeutics. This important
first step is not ordinarily funded by industry given the long-term
path of basic science and the pressures for shorter-term return on
investments by industry.
Also, these investments contribute to economic growth in hundreds
of communities nationwide, as more than 83 percent of NIH funding is
distributed to more than 3,000 institutions in communities in every
State. Moreover, it will help preserve and expand America's role as
leader in biomedical research, which fosters a wide range of private
enterprises in the pharmaceutical, biotechnology, medical device, and
many others. For example, in fiscal year 2010, NIH investments led to
the creation of 487,900 jobs, and produced more than $68 billion in new
economic activity--helping 16 States to experience job growth of 10,000
jobs or more at a time when unemployment was otherwise rising.
Conclusion
With its rapid growth in countries worldwide, the SfN membership is
a metaphor for the extraordinary opportunity and future of
neuroscience. Like SfN, the study of neuroscience is growing rapidly,
with young people flocking to the field. Tools to study the living
brain and to connect brain structure and function to physiology,
disease, and behavior give unmatched opportunities for scientists to
understand how the brain works. The growth of neuroscience also
reflects increased societal recognition of the field's importance.
Understanding the brain is vitally important and urgent if humankind is
to address successfully major challenges facing our society and our
world, such as drug addiction, obesity and depression. As populations
grow and age, understanding how to enhance human development and
performance, and preserve function during aging, are critical to social
and economic prosperity.
I also submit that it is vital for this subcommittee to continue to
recognize and sustain U.S. leadership in the global scientific arena.
Neuroscience, like all fields of science, is an increasingly global
enterprise, creating opportunities for both collaboration and
competition. Fundamentally, neuroscientists worldwide are motivated to
answer the question ``I wonder why?''--often, they seek to pursue those
answers collaboratively, working across borders to tackle large
problems with sophisticated technologies and coordinated sub-
specialties. To that end, many countries other than the United States
demonstrate established and growing scientific excellence in the field,
and this is a healthy and very positive trend.
At the same time, for the United States there is growing
competition for leadership in science worldwide, as many nations
recognize it will be the foundation for economic prosperity in the
coming decades. Over the last century, the United States has served as
the global pace-setter on investment in science, and leveraged research
as a primary engine for economic growth and prosperity, but this
leadership is at risk. The United States has an opportunity to retain
its strong and unassailable leadership in global neuroscience by
continuing to invest strongly in biomedical research. An investment in
basic research is an essential component for reducing healthcare
spending and improving healthcare delivery. We now stand at the
precipice of an economic disaster because the costs of treating many
diseases, such as Alzheimer's, will be astronomical in the next 50
years. Additional scientific research is necessary to develop new
treatments and cures, which will produce longer, healthier and more
productive lives for Americans and create greater economic growth for
our Nation.
In conclusion, NIH investments have made it possible for the field
of neuroscience research to make tremendous progress to understand
basic biological principles and to advance the knowledge and treatments
for hundreds of neurological and psychiatric illnesses. However,
continued progress can only be accomplished by consistent and reliable
support. This year's investment is a building block for success 10, 15,
even 20 years or more from now.
The administration's budget request for NIH is $30.7 billion, the
same amount that was funded last year. This is a welcome start but it
is insufficient to maintain the scientific progress and leadership
required of the United States in the 21st century. This subcommittee
knows that a flat budget is a cut, given the rate of inflation. The
Society for Neuroscience does not believe that reducing our commitment
to research is medically or economically justified. An fiscal year 2013
NIH appropriation of at least $32 billion and sustained reliable growth
in the future is essential to take the research to the next level in
order to improve the health of Americans and to maintain American
leadership in science worldwide. Thank you for this opportunity to
testify.
______

Prepared Statement of the Society for Public Health Education
The Society for Public Health Education (SOPHE) is a 501(c)(3)
professional organization founded in 1950 to provide global leadership
to the profession of health education and health promotion. SOPHE
contributes to the health of all people and the elimination of health
disparities through advances in health education theory and research;
excellence in professional preparation and practice; and advocacy for
public policies conducive to health. SOPHE is the only independent
professional organization devoted exclusively to health education and
health promotion. Members include behavioral scientists, faculty,
practitioners, and students engaged in disease prevention and health
promotion in both the public and private sectors. Collectively, SOPHE's
4,000 national and chapter members work in universities, medical/
healthcare settings, businesses, voluntary health agencies,
international organizations, and all branches of Federal/State/local
government. There are currently 19 SOPHE chapters covering more than 30
States and regions across the country.
SOPHE's vision of a healthy world through health education compels
us to advocate for increased resources targeted at the most pressing
public health issues and disparate populations. For the fiscal year
2013 funding cycle, SOPHE encourages the Labor, Health and Human
Services, Education and Related Agencies (Labor-HHS) Subcommittee to
increase funding for public health programs that focus on preventing
chronic disease and other illnesses in adults as well as youth, and
eliminating health disparities. In particular, SOPHE requests the
following fiscal year 2013 funding levels for Labor-HHS programs:
--$7.8 billion for the Centers for Disease Control and Prevention
(CDC);
--$1 billion for the Prevention and Public Health Fund;
--$226 million for the Community Transformation Grants (CTG) Program;
--$100 million for the CDC Preventive Health and Health Services
Block Grant; and
--$378 million for the CDC Coordinated Chronic Disease Prevention and
Health Promotion Program.
The discipline of health education and health promotion, which is
some 100 years old, uses sound science to plan, implement, and evaluate
interventions that enable individuals, groups, and communities to
achieve personal, environmental and population health. There is a
robust, scientific evidence-base documenting not only that various
health education interventions work but that they are also cost
effective. These principles serve as the basis for our support for the
programs outlined below and can help ensure our Nation's resources are
targeted for the best return on investment.
preventing chronic disease
The data are clear: chronic diseases are the Nation's leading
causes of morbidity and mortality and account for 75 percent of every
dollar spent on healthcare in the United States. Collectively, they
account for 70 percent of all deaths nationwide. Thus, it is highly
likely that 3 of 4 persons living in the districts of the Labor-HHS
Subcommittee members will develop a chronic condition requiring long-
term and costly medical intervention in their lifetimes. Health
expenditures increased from $1.4 trillion in 2000 to $2.6 trillion in
2010, and from 14 percent of the Gross Domestic Product to 18 percent.
Yet evidence shows that investing just $1 in preventing disease will
yield a $5 return on investment.
SOPHE is requesting a fiscal year 2013 funding level $7.8 billion
for CDC in order to prevent chronic diseases and other illnesses,
promote health, prevent injury and disability, and ensure preparedness
against health threats. CDC is at the forefront of U.S. efforts to
monitor health, detect and investigate health problems, conduct
research to enhance prevention, develop sound public health strategies,
and foster safe and healthful environments. More than 80 percent of all
CDC funds are returned to States to address State and local health
issues. The President's fiscal year 2013 budget proposal would reduce
CDC's budget authority by $664 million, for a total reduction of $1.4
billion since fiscal year 2010. Studies show that spending as little as
$10 per person on proven preventive interventions could save the
country over $16 billion in just 5 years. The public overwhelmingly
supports increased funding for disease prevention and health promotion
programs. Investing now in community-led, innovative programs will help
to increase our Nation's productivity and performance in the global
market; help ensure military readiness; decrease rates of infant
mortality, deaths due to cancer, cardiovascular disease, diabetes, and
HIV/AIDS, and; increase immunization rates.
SOPHE is requesting a fiscal year 2013 funding level of $1 billion
for the Prevention and Public Health Fund to sustain essential core
public health infrastructure, the workforce, and our capacity to
improve health in our communities. The Prevention Fund helps States
tackle the leading causes of death and root causes of costly,
preventable chronic disease; detect and respond rapidly to health
security threats; and prevent accidents and injuries. With this
investment, the Fund helps States and the Nation as a whole focus on
fighting disease and illness before they happen. A July 2011 study
published in the journal Health Affairs found that increased spending
by local public health departments can save lives currently lost to
preventable illnesses; a 2011 Urban Institute study concluded that it
is in the Nation's best interest from both a health and economic
standpoint to maintain funding for evidence-based, public health
programs that save lives and bring down costs; and finally, a 2011
study in Health Affairs showed a combination of three strategies (i.e.
delivering better preventive and chronic care, expanding health
insurance coverage, and focusing on protection) is more effective at
saving lives and money than implementing any one of these strategies
alone.
Although the enactment of the Middle Class Tax Relief and Job
Creation Act of 2012 will reduce the Prevention and Public Health Fund
by more than $5 billion over the next 10 years, SOPHE strongly
discourages further reductions in the Fund so that we can continue to
strengthen core public health infrastructure, the workforce, and our
capacity to improve health in our communities.
SOPHE is requesting a fiscal year 2013 funding level of $226
million for the CTG program to empower communities to transform places
where people live, work, learn, and play to promote prevention and
improve health by lowering rates of chronic disease. The CTG program
supports States and communities tackle the root causes of poor health
so Americans can lead healthier, more productive lives. All grantees
work to address the following priority areas: (1) tobacco-free living;
(2) active living and healthy eating; and (3) quality clinical and
other preventive services. Two-thirds of current CTG grantees address
one or more other population groups experiencing disparities, including
but not limited to the homeless and those living in underserved
geographic areas.
The CTG program is especially needed to address the health of our
Nation's youth. In the last 20 years, the percentage of overweight
youth has more than doubled, and for the first time in two centuries,
children may have a shorter life expectancy than their parents. Fifteen
percent of children and adolescents are overweight and more than half
of these children have at least one cardiovascular disease risk factor,
such as elevated cholesterol or high blood pressure. At the same time
that obesity is becoming an epidemic, the CDC School Health Programs
and Policy Study found that the majority of schools are teaching
nutrition with health education teachers who do not meet even minimal
certification standards.
As part of the CTG initiative, SOPHE strongly supports CDC's Racial
and Ethnic Approaches to Community Health Across the U.S. (REACH U.S.)
program, which addresses health risk behaviors in both children and
adults. Chronic diseases account for the largest health gap among
populations and increase health disparities among racial and ethnic
minority groups. As the U.S. population becomes increasingly diverse,
the Nation's health expenditures will be heavily influenced by the
morbidity of racial and ethnic minority communities. With CTG funding,
the National REACH Coalition will address strategies in the areas of
tobacco-free living, active living and healthy eating, clinical and
other preventive services, social and emotional wellness, and healthy
and safe physical environments--with a primary focus on African-
American/Black, Hispanic/Latino, Asian, Native Hawaiian/Pacific
Islander, and American Indian/Alaskan Native populations.
SOPHE is requesting a fiscal year 2013 funding level of $100
million for the CDC's Preventive Health and Health Services Block Grant
to allow each State/territory to target resources to its unique public
health challenges, while requiring timely reporting and accountability.
The Block Grant was eliminated in the President's fiscal year 2013
budget proposal. As a critical public health resource, the Block Grant
gives States the autonomy and flexibility to tailor prevention and
health promotion programs to their particular public health needs.
Grantees use funds to support to areas where no Federal resources
exist, or where categorical States funds are grossly insufficient for
leading causes of illness, disability and death in their States/
territories. With the uncertainty of State and local budgets, the
proposed elimination of the Block Grant will limit the ability of
public health departments to carry out essential services for chronic
disease prevention, HIV/AIDs, food and water safety, bioterrorism and
emergency preparedness, and other areas.
SOPHE applauds the request of $378 million for the Coordinated
Chronic Disease Prevention and Health Promotion Program, an increase of
$128 million above the fiscal year 2012 level. The approach will enable
CDC to create a coordinated, national response to school health and
chronic disease, maximizing program effectiveness, reducing
interrelated risk factors, and accelerating health improvements. Almost
80 percent of young people do not eat the recommended 5 servings of
fruits and vegetables each day. Daily participation in high school
physical education classes dropped from 42 percent in 1991 to 32
percent in 2001. Among 38 States that participated in CDC's latest
School Health Policies and Programs Study, the percentage of schools
that required a health education course decreased between 1996 and
2000, as did the percentage of schools that taught about dietary
behaviors and nutrition. Patterns of poor nutrition, lack of physical
activity, and other behaviors such as alcohol and tobacco use
established during youth often continue into adulthood and contribute
markedly to costly, chronic conditions.
CDC's Coordinated School Health Programs have been shown to be cost
effective in improving children's health, their behavior, and their
academic success. This funding builds bridges between State education
and public health departments to coordinate health education,
nutritious meals, physical education, mental health counseling, health
services, healthy school environments, health promotion of faculty, and
parent and community involvement. Gallup polls show strong parental,
teacher, and public support for school health education.
Thank you for this opportunity to present our views to the
Subcommittee. SOPHE gratefully acknowledges the strong support that the
Senate Subcommittee on Labor, Health and Human Services, Education and
Related Agencies has given to public health and prevention initiatives.
We look forward to working with you to prevent chronic illness, improve
the quality of lives, and save billions of dollars in healthcare
spending.
______

Prepared Statement of the Sleep Research Society
The members of the Sleep Research Society (SRS) are pleased to
submit this statement for the record recommending $32 billion in fiscal
year 2013 for the National Institutes of Health (NIH). The Scleroderma
Foundation also recommends maintaining the Sleep Program at the Centers
for Disease Control and Prevention (CDC). Established in 1961, the
Sleep Research Society (SRS) is a member organization of scientists
that exists to foster scientific investigation on all aspects of sleep
and its disorders, to promote training and education in sleep research,
and to provide forums for the exchange of knowledge pertaining to
sleep.
Sleep and circadian disturbances and disorders affect millions of
Americans across all demographic groups. An estimated 25-30 percent of
the general adult population, and a comparable percentage of children
and adolescents, is affected by decrements in sleep health that are
proven contributors to disability, morbidity, and mortality. As a
result, sleep and circadian disturbances and disorders have been
recognized by Congress and the Department of Health and Human Services
as high priority targets for basic and clinical scientific
investigation.
In November 2011 a new NIH Sleep Research Plan was released. It
identifies new opportunities for continued advances in understanding
the function of sleep to inform lifestyle choices and improve the
opportunity of individuals to achieve their optimal health outcome. The
plan was developed through an open process with the Sleep Disorders
Research Advisory Board and with input from the public, academia and
healthcare professionals. The plan provides the following insights
regarding sleep loss's effects on society:
Chronic sleep deficiency and circadian disruption is an emerging
characteristic of modern urban lifestyles and is associated with
increase disease risk through multiple complex pathways in all age
groups. Developing a mechanistic understanding of the threat posed by
sleep deficiency and circadian disturbance to health, healthy equity,
and health disparities is an urgent challenge for biomedical research
in many domains. Population-based data on the prevalence of circadian
disruption and its relationship to disease risk is relatively limited.
However, recent findings from large multi-site cohort studies and
nationally representative surveillance data from the Centers for
Disease Control indicate that sleep deficiency among Americans is
pervasive, and much higher than inferred from clinical data. For
example:
--Nearly 70 percent of high school adolescents sleep less than the
recommended 8-9 hours of sleep on school nights despite a
physiological need. Short sleep in this age group is associated
with suicide risk, obesity, depression and mood problems, low
grades, and delinquent behavior.
--Nationwide, 70 percent of adults report that they obtain
insufficient sleep or rest at least once each month, and 11
percent report insufficient sleep or rest every day of the
month.
--Frequent sleep problems are reported by 65 percent of Americans
including difficulty falling asleep, waking during the night,
and waking feeling unrefreshed at least a few times each week,
with nearly half (44 percent) of those saying they experience
that sleep problem almost every night.
--Short and long sleep duration is associated with up to a two-fold
increased risk of obesity, diabetes, hypertension, incident
cardiovascular disease, stroke, depression, substance abuse,
and all-cause mortality in multiple studies.
--Drowsy driving may be a factor in 20 percent of all serious motor
vehicle crash injuries. A large naturalistic study of 100
drivers and nearly 2 million miles of driving identified
sleepiness as a factor in 22 percent of crashes, and 16 percent
of near-crashes. A third of Americans report falling asleep
while driving 1 to 2 times per month and 26 percent drive
drowsy during the workday.
Although knowledge of basic sleep and circadian mechanisms and the
pathophysiology of sleep and circadian disorders and disturbances has
advanced considerably since the 1996 NIH Sleep Disorders Research Plan
was developed, important questions remain. For instance, studies are
needed to stratify risks to health and identify vulnerable populations.
Mechanistic studies are needed to define the genomic, physiological,
neurobiological, and developmental impact of sleep and circadian
disturbances. Recent findings indicate that sleep and circadian rhythms
are coupled to chromatin remodeling and regulate as much as 20 percent
of gene expression in peripheral tissues including the heart, liver,
pancreatic islets, adipose, and immune system. Genome-wide association
studies have implicated pancreatic melatonin receptor polymorphism in
both blood glucose regulation and diabetes risk. Research is also
needed to enhance the translation of sleep and circadian scientific
advances to clinical practice, researchers in cross-cutting domains,
and communities.
Advances in basic sleep and circadian knowledge are poised to
provide an improved foundation for understanding how sleep and
circadian rhythms contribute to health, and why a wide range of health,
performance and safety problems emerge when sleep and circadian rhythms
are disrupted. Strengthening and preserving our Nation's biomedical
research enterprise through investment in NIH fosters economic growth
and is vital to the innovations that enhance the health and well-being
of the American people.
______

Prepared Statement of the Safe States Alliance
On behalf of the Safe States Alliance, a national membership
association representing public health injury and violence prevention
professionals engaged in building a safer, healthier America, we thank
you for the opportunity to provide our testimony in support of the
Centers for Disease Control and Prevention (CDC) and the National
Center for Injury Prevention and Control (NCIPC). Safe States is
committed to raising the visibility of the critical need for continued
funding in State and local public health department injury and violence
prevention programs.
The Safe States Alliance supports restoration of the Preventive
Health and Health Services Block Grant to its fiscal year 2011 funding
level of $100 million and restoration of the CDC Injury Center to its
fiscal year 2011 funding level of $147.8 million. Preventable injuries
exact a heavy burden on Americans through premature deaths and
disabilities, pain and suffering, medical and rehabilitation costs,
disruption of quality of life for families, and disruption of
productivity for employers. Strengthening investments in public health
injury and violence prevention programs is a critical step to keep
Americans safe and productive for the 21st century.
The CDC Injury Center is the only Federal agency that exclusively
focuses on injury and violence prevention in home, recreational, and
other non-occupational settings. It leads a coordinated public health
approach to addressing critical health and safety issues. Despite the
enormous toll of injury and violence and the existence of cost-
effective interventions, there is no dedicated and ongoing Federal,
State, or local funding to adequately respond to these problems. The
CDC Injury Center only receives 2 percent of the CDC/Agency for Toxic
Substances and Disease Registry (ATSDR) budget to address the
significant burden of injuries and violence nationwide. In fiscal year
2012, the total Injury Center budget was only $137.7 million, down from
$147 million in fiscal year 2011.
Injuries are the leading cause of death among persons 1-44 years of
age, and are a major cause of death, disability, and hospitalization
for all age groups. Every 3 minutes, a person dies from a preventable
injury. Every 45 minutes, one of those preventable deaths is a child.
In fact, more than 500 people die each day and 180,000 die each year
from injuries in the United States. Over 29 million individuals survive
non-fatal injuries, only to cope with painful recoveries and
rehabilitation. Among the survivors are the nearly 9.2 million children
under age 19 that are seen in emergency departments for injuries.
Every year, injuries and violence will cost the United States $406
billion: over $80 billion in medical costs (6 percent of total health
spending) and $326 billion in lost productivity. Long term disabilities
from brain and spinal cord injuries, burns, and fall-related hip
fractures frequently result in high-cost, extended care. Injuries,
especially fractures, for persons age 65 and older make up a
substantial proportion of Medicare expenditures. As the U.S. population
continues to age, this problem will be an even more significant burden
on the Medicare system.
However, injuries and violence can be prevented, and their
consequences can be reduced. For example: seat belts have saved an
estimated 255,000 lives between 1975 and 2008; school-based programs to
prevent violence have reduced violent behavior among high school
students by 29 percent; and Tai chi and other exercise programs for
older adults have been shown to reduce falls by as much as half among
participants.
Injuries, including falls among older adults, have significant
costs for our mandatory spending programs. Currently, 35 million
Americans are 65 years of age or older; by 2020 this number is expected
to reach 77 million.
--The annual costs for fall-related injuries are expected to reach
$54.9 billion by 2020 \1\.
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\1\ Englander F, Hodson TJ, Terregrossa RA. Economic dimensions of
slip and fall injuries. Journal of Forensic Science 1996;41(5):733-
46.trial. The Gerontologist 1994;34(1):16-23.
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--Falls account for 10 percent of visits to an emergency department
and 6 percent of hospitalizations among Medicare beneficiaries
\2\.
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\2\ Carroll NV, Slattum PW, Cox FM. The cost of falls among the
community-dwelling elderly. Journal of Managed Care Pharmacy.
2005;11(4):307-16.
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--In 2002, about 22 percent of community-dwelling seniors reported
falling in the previous year. Medicare costs per fall averaged
between $9,113 and $13,507 \3\.
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\3\ Shumway-Cook A, Ciol MA, Hoffman J, Dudgeon BJ, Yorston K, Chan
L. Falls in the Medicare population: incidence, associated factors, and
impact on health care. Physical Therapy 2009.89(4):1-9.
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--Among community-dwelling seniors treated for fall injuries, 65
percent of direct medical costs were for inpatient
hospitalizations; 10 percent each for medical office visits and
home health care, 8 percent for hospital outpatient visits, 7
percent for emergency room visits, and 1 percent each for
prescription drugs and dental visits. About 78 percent of these
costs were reimbursed by Medicare \4\.
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\4\ Carroll NV, Slattum PW, Cox FM. The cost of falls among the
community-dwelling elderly. Journal of Managed Care Pharmacy.
2005;11(4):307-16.
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CDC's research has also identified other cost impacts of injuries
on CMS populations including costs related to prescription drug over
doses. In Washington State, for example, from 2004 to 2007, 1,668
people died of prescription opioid-related overdoses. Of those, 45.4
percent were Medicaid enrolled, and this population had a 5.7 fold
increased risk of prescription opioid-related overdose death \5\.
Adoption of lock-in programs can produce significant cost benefits as
in Florida, where its Medicaid lock-in program saved the State Medicaid
program $12 million in less than 3 years \6\. Washington State has
informally reported savings of $1.5 million per month with their
program. Missouri, Hawaii, and Oklahoma have also reported some
success. Medicaid programs spend well over $1 billion annually on
opioid painkillers, and a 2009 GAO report found that these
reimbursements are rife with fraud. A survey of five States identified
65,000 beneficiaries visiting six or more doctors to acquire
prescriptions for the same controlled substances. These beneficiaries
cost the programs $63 million in reimbursements for those drugs, and
this number does not account for other related costs \7\.
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\5\ CDC. Overdose deaths involving prescription opioids among
Medicaid enrollees-Washington, 2004-2007. MMWR. 2010;59;705-9.
\6\ Florida Medicaid. Medicaid Prescribed Drug Spending Control
Program Initiatives: Quarterly Report January 1-March 31, 2005.
Available at URL: http://www.fdhc.state.fl.us/medicaid/prescribed_drug/
pdf%5Cquarterly_report_03_31_05.pdf.
\7\ GAO. Fraud and abuse related to controlled substances
identified in selected States. Sept. 2009. Available at URL: http://
www.gao.gov/new.items/d09957.pdf.
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Safe States Alliance believes that all State and territorial health
departments (SHDs) in the United States must have a comprehensive
injury and violence surveillance and prevention programs, similar to
other public health programs for chronic disease and infectious disease
prevention. These programs must be adequately staffed and funded
commensurate with the magnitude of the burden of injury and violence in
each State with programs and expertise to address the leading causes of
unintentional and violent injuries, and have disaster and terrorism
epidemiology and injury mitigation programs. SHDs bring significant
leadership to reduce injuries and injury-related healthcare costs by
informing the development of public policies through data and
evaluation; designing, implementing, and evaluating injury and violence
prevention programs in cooperation with other agencies and
organizations; collaborating with partners in healthcare and throughout
the community; collecting and analyzing a variety of injury and
violence data to identify high-risk groups; disseminating effective
practices, and providing technical support and training to injury
prevention partners and local-level public health professionals. The
following are examples of how SHDs have prevented injuries and
protected the lives of Americans throughout the United States:
--An estimated 3,143 lives potentially have been saved since 1998 as
a result of CDC-funded smoke alarm installation and fire safety
education programs in high-risk communities. In funded States,
more than 487,800 smoke alarms have been installed in
approximately 250,000 homes. High-risk homes that were targeted
by the program included children age 5 and younger and adults
age 65 and older.
--The Bureau of Injury Prevention at the New York State Department of
Health conducted a study which was published in the 2010
September issue of Pediatrics that found that the injury rate
for motor vehicle crashes decreased by 18 percent for children
4 to 6 years of age after the State law requiring booster seats
was implemented in 2005.
--Oregon's Prescription Drug Monitoring Program (PDMP) was launched
by the State Injury and Violence Prevention Section in 2011 as
s a tool to help patients better manage their prescriptions 24
hours a day, 7 days a week. Within months, 76 percent of
pharmacists were submitting to the PDMP system, over 699,000
prescriptions had been submitted to the system, and 8,999
queries had been made by healthcare providers. The aggregate
data that will be available will provide a vast new source of
information for understanding the overdose epidemic in Oregon.
--Following passage of Complete Streets legislation in Hawaii, the
Injury Prevention and Control Program (IPCP) was selected to
participate on a statewide taskforce which was responsible for
providing guidance to the State and individual counties on road
design that can safely accommodate all road users.
--In 2010, with support from the CDC's Core State Injury program, the
Colorado State Health Department Injury Program provided the
science and data on child passenger safety to State advocates.
Changes to strengthen Colorado's Child Passenger Safety Law
were passed in August 2010. Colorado is now conducting a
community education campaign about the change of law to support
its law enforcement partners.
--In 2007, Massachusetts Department of Public Health's Traumatic
Brain Injury (TBI) Task Force report identified sports
concussions as a leading and growing cause of TBI in the State.
In January 2009, the Massachusetts injury prevention planning
group (MassPINN)--which is coordinated by the Department of
Public Health using CDC Core State Injury Program funds--forged
a partnership with the Sports Legacy Institute and other
partners to form the Massachusetts Youth Sports Concussion
Prevention Team to raise awareness of the dangers of sports-
related concussions and other head injuries among youth. Over a
14-month period, more than 1,500 CDC ``Heads Up'' kits were
distributed and more than 2,000 parents, coaches, and athletes
were educated about the dangers of youth sports concussions.
--The South Carolina Department of Health and Environmental Control
(DHEC) used surveillance data collected and analyzed by staff
supported through CDC's Core State Injury program, to
thoroughly understand the burden of older adult falls in their
State and to inform partners on how this issue impacts quality
of life for seniors. This data was used by a State workgroup
and resulted in the funding and implementation of an evidence-
based fear of fall prevention program in select communities.
DHEC provides personnel time for instruction and funds to
purchase training materials.
When evidence-based injury prevention strategies are implemented,
the estimated return on investment is substantial. For instance, home
visitation programs have been demonstrated to be particularly effective
in reducing child abuse and injury, and provide a cost savings of
nearly $3 to $6 for every $1 spent. Other proven cost-effective injury
prevention strategies include booster seats, child bicycle helmets,
motorcycle helmets, sobriety checkpoints, smoke alarms and fall
prevention for the elderly with total costs ranging from $31 to $9,600
each for cost-savings and total benefits to society \8\ between $570
and $73,000 for each.
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\8\ The total benefit to society is defined as the amount injury
prevention interventions saved by preventing injuries, including
medical costs, other resource costs (police, fire services, property
damages, etc.), work loss, and quality of life costs. These benefits
are calculated in 2004 dollars.
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Currently, NCIPC provides up to $250,000 to 28 SHDs through the
Core Violence and Injury Prevention Program (VIPP) to maintain and
enhance effective delivery systems for dissemination, implementation
and evaluation of best practice programs and policies. This includes
support for the SHDs and their local partners, as well as strategy-
specific support for the implementation of direct best practice
interventions. In addition, Core VIPP supports SHDs in their efforts to
work toward integration and strategically align their resources for
meaningful change. According to Safe States Alliance's 2009 State of
the States report, States received NCIPC Core funding were more likely
to have a centralized program, a full-time director, and greater access
to key injury data sets. They were more likely to provide support to
local injury efforts, provide surveillance data and technical
assistance. States with Core VIPP funding are also well-positioned to
leverage additional resources, implement and evaluate interventions,
and raise awareness of injury trends.
CDC Injury Center's Core Violence and Injury Prevention Program is
the only program of its kind in the Nation. No other Federal agency
funds overall injury and violence prevention capacity development. An
additional investment of just $10 million would allow the CDC Injury
Center to fund all State and territorial public health departments
through the Core VIPP. This funding would allow for expansion and
stabilization of resources for State injury and violence prevention
programs; strengthening the ability of States to improve the collection
and analysis of injury data, build coalitions, and establish
partnerships to promote evidence-based interventions; and dissemination
of proven injury and violence prevention strategies, with a focus on
persons at highest risk.
In addition to the Core VIPP program, SHDs rely on the CDC
Preventive Health and Health Services Block Grant which provides
approximately $20 million for injury and violence prevention, including
approximately $6 million set-aside specifically for sexual assault
prevention. According to initial findings from the 2011 State of the
States survey, 30 SHD injury and violence prevention programs reported
receiving an average of $313,000 for injury and violence prevention
efforts, much of which is used for local implementation of evidence-
based practices. Safe States Alliance would like to thank the Committee
for its consideration of this testimony.
______

Prepared Statement of the Society for Women's Health Research
The Society for Women's Health Research (SWHR) is pleased to have
the opportunity to submit the following testimony in support of ongoing
Federal funding for biomedical research and specifically into
biological sex differences and total women's health research--within
the Department of Health and Human Services (HHS) at the National
Institutes of Health (NIH), Centers for Disease Control and Prevention
(CDC), and the Agency for Healthcare and Research Quality (AHRQ).
SWHR believes that sustained funding for biomedical and women's
health research programs conducted and supported across the Federal
agencies is absolutely essential if the United States is going to meet
the health needs of women and men. A well-designed and appropriately
funded Federal research agenda does more than avoid dangerous and
expensive ``trial and error'' medicine for patients--it advances the
Nation's research capability, continues growth in a sector with proven
return on investment, and takes a proactive approach to maintaining
America's position as worldwide leader in medical research, education,
and development.
In his State of the Union address, President Obama stated that
investment in biomedical research ``will strengthen our security,
protect our planet, and create countless new jobs for our people''.
Proper investment in health research will save valuable dollars that
are currently wasted on inappropriate treatments and procedures.
Additionally, SWHR believes that targeted research into biological sex
differences will help determine targeted treatments that will propel
the United States into the realm of personalized medicine and usher in
a 21st century approach to patient care.
national institutes of health
SWHR realizes that the Federal Government's focus is on austerity;
however, past congressional investment for the NIH positioned the
United States as the world's leader in biomedical research and has
provided a direct and significant impact on women's health research and
the careers of women scientists over the last decade. In recent years,
that investment has declined and jeopardized America place as the gold
standard in biomedical research. Cutting NIH funding threatens
scientific advancement, substantially delays cures becoming available
in the United States, and puts the innovative research practices and
reputation that America is known for in jeopardy.
From 2003- 2012, NIH has faced a 20.8 percent decrease in buying
power as a direct result of budget cuts. When faced with budget cuts,
NIH is left with no other option but to reduce the number of grants it
is able to fund. The number of new grants funded by NIH had dropped
steadily with declining budgets, growing at a percent less than that of
inflation since fiscal year 2003. A shrinking pool of available grants
has a significant impact on scientists who depend upon NIH support to
cover both salaries and laboratory expenses to conduct high quality
biomedical research, putting both medical advancement and job creation
at risk. More than 83 percent of NIH funding is spent in communities
across the Nation, creating jobs at more than 3,000 universities,
medical schools, teaching hospitals, and other research institutions in
every State.
Reducing the number of grants available to researchers further
decreases publishing of new findings and decreases the number of
scientists gaining experience in research, impacting a scientist's
likelihood of continuing research. New and less established researchers
are forced to consider other careers, or take positions outside the
United States, resulting in the loss of the skilled bench scientists
and researchers desperately needed to sustain America's cutting edge in
biomedical research.
While the U.S. deficit requires careful consideration of all
funding and investments, cutting relatively small discretionary funding
within the NIH budget will not make a substantial impact on the
deficit, but will drastically hamper the ability of the United States
to remain the global leader in biomedical research. SWHR and WHRC
recommend that Congress set, at a minimum, a budget of $32 billion for
NIH for fiscal year 2013.
Study of Sex Differences
Scientists have just begun to uncover the significant biological
and physiological differences between women and men and its impact
health and medicine. Sex-based biology, the study of biological and
physiological differences between women and men, has revolutionized the
way that the scientific community views the sexes. Sex differences play
an important role in disease susceptibility, prevalence, time of onset
and severity and are evident in cancer, obesity, heart disease, immune
dysfunction, mental health disorders, and many other illnesses.
Medications can have different effects in woman and men, based on sex
specific differences in absorption, distribution, metabolism and
elimination. It is imperative that research addressing these important
differences be supported and encouraged.
SWHR recommends that NIH, with the funds provided, be mandated to
report sex/gender differences in all research findings, including those
studying a single sex but with explanation and justification. Further,
NIH should seek to expand its inclusion of women in basic, clinical and
medical research to Phase I, II, and III studies. By currently
mandating sufficient female subjects only in Phase III, researchers
often miss out on the chance to look for variability by sex in the
early phases of research, where scientists look at treatment safety and
determine safe and effective dose levels for new medications. By
including female subjects in earlier phases of clinical research
studies, the NIH will serve as a role model for industry research, as
well as other nations. Only by gaining more information on how
therapies work in women will medicine be able to advance toward more
targeted and effective treatments for all patients, women and men
alike.
Office of Research on Women's Health
The NIH's Office of Research on Women's Health (ORWH) serves as the
focal point for coordinating women's health and sex differences
research at NIH, advising the NIH Director on matters relating to
research on women's health and sex differences research, strengthening
and enhancing research related to diseases, disorders, and conditions
that affect women; working to ensure that women are appropriately
represented in research studies supported by NIH; and developing
opportunities for and support of recruitment, retention, re-entry and
advancement of women in biomedical careers.
The Building Interdisciplinary Research Careers in Women's Health
(BIRCWH) and Specialized Centers of Research on Sex and Gender Factors
Affecting Women's Health (SCOR) are two ORWH programs that benefit the
health of both women and men through sex and gender research,
interdisciplinary scientific collaboration, and provide tremendously
important support for young investigators in a mentored environment.
The BIRCWH program, created in 2000, 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. Each BIRCWH receives
approximately $500,000 a year, most from the ORWH budget. To date, over
400 scholars have been trained in 41 centers, and 80 percent of those
scholars have been female. The BIRCWH centers have produced over 1,300
publications, 750 abstracts, 200 NIH grants and 85 awards from industry
and institutional sources.
SCORs, established in 2003, are designed to increase innovative,
interdisciplinary research focusing on sex differences and major
medical problems that affect women through centers that facilitate
basic, clinical, and translational research. Each SCOR program results
in unique research and has resulted in over 150 published journal
articles, 214 abstracts and presentations and 44 other publications.
Additionally, ORWH has created several additional programs to
advance the science of sex differences research and research into
women's health. The Advancing Novel Science in Women's Health Research
(ANSWHR) program, created in 2007, promotes innovative new concepts and
interdisciplinary research in women's health research and sex/gender
differences. The Research Enhancement Awards Program (REAP) supports
meritorious research on women's health that otherwise would have missed
the NIH institute and center (IC) pay line.
In addition to its funding of research on women's health and sex
differences research, ORWH has established several methods for
dissemination information about women's health and sex differences
research. ORWH created the Women's Health Resources web portal in
collaboration http://www.womenshealthresources.nlm.nih.gov) with that
National Library of Medicine, to serve as a resource for researchers
and consumers on the latest topics in women's health and uses social
media to connect the public to health awareness campaigns.
To allow ORWH's programs and research grants to continue make their
impact on research and the public, Congress must direct that NIH
continue its support of ORWH and provide it with a $1 million budget
increase, bringing its fiscal year 2013 total to $43.3 million.
Health and Human Services' Office of Women's Health
The HHS Office of Women's Health (OWH) is the Government's champion
and focal point for women's health issues. It works to redress
inequities in research, healthcare services, and education that have
historically placed the health of women at risk. Without OWH's actions,
the task of translating research into practice would be only more
difficult and delayed.
Under HHS, the agencies currently with offices, advisors or
coordinators for women's health or women's health research include the
Food and Drug Administration (FDA), Centers for Disease Control and
Prevention (CDC), Agency for Healthcare Quality and Research (AHRQ),
Indian Health Service (INS), Substance Abuse and Mental Health Services
Administration (SAMHSA), Health Resources and Services Administration
(HRSA), and Centers for Medicare and Medicaid Services (CMS). It is
imperative that all these offices are funded at levels which are
adequate for them to perform their assigned missions, and are
sustainable so as to support needed changes in the long term. This is
especially true for HRSA, which promotes an integrated approach to
women's health across the lifespan and helps low income women access
necessary health services. SAMHSA has taken a lead role promoting
improvement in women's mental health services and best-practices. The
agency also devotes significant resources to assist the VA and DOD with
mental health services and support for members of the armed services,
their families and veterans. It is only through consistent funding that
these offices, as well as the OWH are able to achieve their goals.
We ask that the Committee report reflect Congress' support for
these Federal women's health offices, and recommend that they are
appropriately funded on a permanent basis to ensure that these programs
can continue and be strengthened in the coming fiscal year. These
offices do important work, both individually and in collaboration with
other offices and Federal agencies--to ensure that women receive the
appropriate care and treatments in a variety of different areas. The
budgets for these offices have been flat-lined in recent years, which
results in effectively a net decrease due to inflation. Considering the
impact of women's health programs from OWH on the public, we urge
Congress to provide an increase of $1 million for the HHS OWH, a total
$34.7 million requested for fiscal year 2013.
centers for disease control and prevention
The CDC's Office of Women's Health (OWH) works to promote and
protect the health, safety, and quality of life of women at every stage
of life. SWHR supports the domestic and international work of the
office. While SWHR is delighted that the CDC's OWH is now codified in
statue, we are concerned that proposed cuts to the CDC budget by the
administration will significantly jeopardize programs that benefit
women, leaving them with even fewer options for sound clinical
information. Research and clinical medicine are still catching up from
decades of a male-centric focus, and when diseases strike women, there
remains a paucity of basic knowledge on how diseases affect female
biology, a lack of drugs that have been adequately tested in women. Now
even fewer options for information through the many educational
outreach programs of the CDC.
The OWH within CDC plays a fundamental role in the agency; leading
the CDC in the collaboration with other offices in CDC, HHS, and the
State Department in the early development of the Global Health
Initiative. In 2012, CDC OWH functioned with a budget of just $473,291
and routinely collaborates with other agencies to advance the knowledge
and research into women's health issues. In a time of limited budgetary
dollars, Congress should invest in those offices that promote working
in collaboration with other agencies, which shares much needed
expertise while avoiding unnecessary duplication. SWHR recommends that
Congress provide the CDC OWH with a 1.06 percent increase for fiscal
year 2013, bringing their total to $478,000.
agency for healthcare and research quality
The Agency for Healthcare Research and Quality'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 healthcare. Through AHRQ's research projects, lives have
been saved. For example, it was AHRQ who first discovered that 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, which have improved diagnostic accuracy and dramatically
increased the timely use of ``clot-dissolving'' medications in women
having heart attacks. As efforts to improve the quality of care, not
just the quantity of care, progress, findings such as these coming out
of AHRQ reveal where relatively modest investments can offer
significant improvement to women's health outcomes, as well as a better
return on investment for scarce healthcare dollars.
While AHRQ has made great strides in women's health research, the
agency has always lacked the funding to truly revolutionize healthcare
in America. Funds from the American Recovery and Reinvestment Act moved
AHRQ in the right direction; however, those funds were never added to
AHRQ's base funding level. SWHR recommend Congress fund AHRQ at the
President's request for fiscal year 2013, with $334 million acting as
AHRQ's base discretionary funds. This investment ensures that adequate
resources are available for high priority research, including women's
healthcare, sex- and gender-based analyses, and health disparities--
valuable information that can help to better personalize treatments,
lower overall medical spending, and improve outcomes for female and
male patients nationwide.
In conclusion, Mr. Chairman, we thank you and this Committee for
its strong record of support for medical and health services research
and its 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 Trust for America's Health
My name is Jeff Levi, and I am Executive Director of Trust for
America's Health (TFAH), a nonprofit, nonpartisan organization
dedicated to saving lives by protecting the health of every community
and working to make disease prevention a national priority. I am
grateful for the opportunity to submit testimony to the Subcommittee
regarding funding for key public health programs. As you craft the
fiscal year 2013 Labor, Health and Human Services, Education and
Related Agencies (LHHS) appropriations bill, I urge you to include
adequate funding for prevention and preparedness programs to promote
America's health. Moreover, as you work with the Department of Health
and Human Services (HHS) to allocate funding from the Prevention and
Public Health Fund (Fund), I urge you to ensure that the Fund is
invested in transformative programs that will modernize our public
health system, lower health costs, and enable Americans to lead longer,
healthier lives.
Centers for Disease Control and Prevention (CDC).--TFAH is
extremely concerned by the diminished funding proposed for the Centers
for Disease Control and Prevention. The President's fiscal year 2013
budget calls for a $664 million reduction in budget authority for CDC,
which is an 11.7 percent cut from fiscal year 2012, and a $1.4 billion
cut since fiscal year 2010. These cuts will force the Agency to choose
between vaccinating children against deadly, preventable illnesses,
detecting foodborne outbreaks, and preventing death and injury from the
next disaster. We urge you to restore base funding to no less than last
year's level, or at least protect CDC from further cuts and focus our
investment on cost-effective public health and prevention programs.
The Prevention and Public Health Fund.--The Prevention and Public
Health Fund is the only dedicated funding for prevention and public
health in U.S. history. Despite the cut contained in the Middle Class
Tax Relief and Job Creation Act, the Fund will still provide an
additional $12.5 billion over the next 10 years (fiscal year 2013 to
fiscal year 2022) to enable communities in every State to invest in
effective, proven prevention efforts. To date, the Fund has invested
$2.25 billion since fiscal year 2010 to support State and local public
health efforts to transform and revitalize communities, build
epidemiology and laboratory capacity to track and respond to disease
outbreaks, train the Nation's public health and health workforce,
prevent the spread of HIV/AIDS, expand access to vaccines, reduce
tobacco use, and help control the obesity epidemic.
The Fund was intended to supplement, not supplant, existing
investments with the first-ever, reliable national funding stream for
public health, while creating jobs, bending the healthcare cost curve,
and prioritizing disease prevention. In the long-run, expenditures from
the Fund should be guided by the National Prevention Strategy (NPS).
The Fund gives Congress the authority to direct the investment, while
at the same time guaranteeing an ongoing commitment to prevention
unprecedented in today's ``sick care'' system. Eliminating the Fund, or
using a substantial portion of it to supplant existing discretionary
dollars, would be an enormous step backwards in our progress on cost
containment, public health modernization, and wellness promotion. We
urge the Committee to protect the Fund and ensure it is used to reduce
healthcare costs and help create a long-term path to a healthier and
economically sound America.
Community Transformation Grants.--Chronic diseases are responsible
for 75 percent of healthcare costs in the United States, and the causes
are often environmental, social, or economic and not addressed by the
clinical care system. The Community Transformation Grants (CTG)
program, administered by the CDC, implements and evaluates evidence-
based community preventive health activities to reduce chronic disease
and address health disparities. The program focuses on innovative,
cross-cutting approaches to reducing health risks. The program aligns
with the NPS by funding multi-sector coalitions to make healthy living
easier and more affordable where people work, live, learn, play, and
exercise. We recommend the Committee allocate $250 million for the CTG
program in fiscal year 2013, which will permit CDC to continue funding
the current grantees and fund additional communities to broaden the
scope and success of the program to reach millions more Americans.
Grants will be used for both community prevention capacity building and
investing in targeted interventions to reduce the prevalence of the
leading causes of death, associated risk factors, and health
disparities.
National Center for Chronic Disease Prevention and Health
Promotion.--Starting in 2011, CDC awarded coordinated chronic disease
State grants to all 50 States to begin to build a core capacity to
address common risk factors and implement comprehensive strategies for
promoting health. CDC recently concluded its first round of meetings
with regional grantees and many States are already reporting
considerable progress in their efforts to reorganize and achieve
progress toward this new approach. TFAH recommends a funding level of
$42 million for the Coordinated Chronic Disease State Grants for fiscal
year 2013, which will permit CDC to continue to support all States in
their efforts to coordinate and integrate chronic disease funding and
activities. The President's proposal to consolidate budget lines for
the Center is another approach that could further aid coordination of
national and State chronic disease activities.
Racial and Ethnic Approaches to Community Health (REACH) programs
work in communities across the country to eliminate racial and ethnic
disparities in health and reduce the burden of chronic disease among
at-risk populations. REACH partners employ innovative, culturally
competent, community-based, and participatory approaches to develop and
implement evidence-based practices, empower communities, and reduce
health disparities. TFAH recommends maintaining the REACH program at
the fiscal year 2012 funding level of $53.94 million. Eliminating REACH
would have a devastating impact on the underserved communities
benefiting from REACH, and would prevent dissemination of best
practices from REACH communities that can reduce health disparities
throughout the Nation.
National Center for Environmental Health (NCEH).--Since fiscal year
2009, NCEH funding has been cut approximately 25 percent. NCEH cannot
afford to sustain additional funding cuts without critically damaging
our Nation's core environmental health infrastructure. The cuts
implemented to the Healthy Homes and Lead Poisoning Prevention program
for fiscal year 2012 alone will jeopardize the health of families and
nearly 450,000 children living in homes nationwide where exposure to
lead, rodent infestation, and other risk factors is likely. We support
funding for NCEH at $181.66 million for fiscal year 2013.
Since 2002, the mission of the National Environmental Public Health
Tracking Network has been to provide information that communities can
use to improve their health; the information will come from a
nationwide network that brings together health and environmental data.
The program currently operates in 23 States and one city. TFAH
recommends $43 million for the Tracking Network to expand the program
to link environmental and health data to identify problems and
effective solutions that will reduce the burden of chronic disease.
This level of funding would enable CDC to fund at least five additional
grantees. An additional $5 million over the fiscal year 2012 level
would enable the program to add at least three States to the existing
network. However, the current level of funding is not sufficient to
fill the health and environmental data gap that is preventing our full
understanding of how our health is affected by the environment.
For over 30 years, the Environmental Health Laboratory of NCEH has
been performing biomonitoring measurements--direct measurements of
people's exposure to toxic substances in the environment. TFAH
recommends a funding increase of $2 million from fiscal year 2012
levels to enable the Division of Laboratory Sciences to work with the
clinical laboratory community to create a standardized measurement
process for several cardiovascular disease biomarkers. A reference
method for these specific biomarkers would improve diagnosis of disease
and create a tremendous return on investment for Federal and State
healthcare programs.
Public Health Emergency Preparedness.--The State & Local
Preparedness & Response Capability program at the Centers for Disease
Control and Prevention is the only Federal program that supports the
work of health departments to prepare for and respond to all types of
disasters, including bioterror attacks, natural disasters, and
infectious disease outbreaks. The centerpiece of the program is the
Public Health Emergency Preparedness (PHEP) Cooperative Agreements.
PHEP grants support all 50 States, as well as major cities and
territories, to develop 15 core public health capabilities identified
by CDC, including in the areas of biosurveillance, community
resilience, countermeasures, mitigation, incident management,
information management, and surge management. TFAH recommends providing
$761.1 million for State and Local Preparedness and Response
Capability, equivalent to the fiscal year 2010 allocation. Recent and
proposed cuts mean that our Nation may be less prepared than it was
just a few years ago, including the potential loss of as many as 1,500
highly trained frontline public health preparedness workers, reducing
the number of high-level laboratories, defunding academic and research
centers, and eroding training, exercise, planning, epidemiology, and
surveillance capacity. Preparedness is dependent on maintaining a well-
trained public health workforce, and inconsistent funding results in
serious gaps in our ability to respond to new health threats.
In the event of a major disease outbreak or bioterror attack, the
public health and healthcare systems would be severely overstretched.
TFAH recommends $426 million for fiscal year 2013 for Hospital
Preparedness Program (HPP), equivalent to the fiscal year 2010
allocation. The HPP, administered by the Assistant Secretary for
Preparedness and Response (ASPR), provides funding and technical
assistance to prepare the health system to respond to and recover from
a disaster. The program, which began in response to 9/11, has evolved
from one focused on equipment and supplies held by individual hospitals
to respond to a terrorist event to a system-wide, all-hazards approach.
Funding for HPP must be maintained to retain and build on the progress
made in hospitals' ability to respond to a disaster.
Pandemic Influenza and Medical Countermeasures Enterprise.--The
2011 H1N1 flu outbreak demonstrated how rapidly a new strain of flu can
emerge and spread around the world. In 2011, CDC confirmed reports from
several States of the first human-to-human transmission of a novel
H3N2v influenza virus, illustrating how quickly the virus can mutate
and spread. Funding for research, prevention, and response cannot
simply be provided after a pandemic emerges. TFAH recommends $160
million for CDC's seasonal and pandemic influenza program, equivalent
to the fiscal year 2012 allocation, to ensure preparedness for this
deadly infectious disease. In fiscal year 2013, CDC will use the
funding to continue to protect the public against seasonal flu, track
the H3N2 variant, monitor changes in the deadly H5N1 virus, work to
reduce ongoing racial and ethnic disparities in adult vaccine demand,
and plan for deploying new advances in vaccine formulations and
diagnostics.
The Biomedical Advanced Research and Development Authority (BARDA),
within the office of the Assistant Secretary for Preparedness and
Response was established in 2006 to jumpstart a new cycle of innovation
in vaccines, diagnostics, and therapeutics, which would not be
developed in the private market, in order to combat emerging health
threats. BARDA provides incentives and guidance for research and
development of products to counter bioterrorism and pandemic flu and
manages Project BioShield, which includes the procurement and advanced
development of medical countermeasures for chemical, biological,
radiological, and nuclear agents. TFAH recommends $547 million for
BARDA for fiscal year 2013 to continue development and acquisition of
medical products key to America's biodefense strategy.
The President's fiscal year 2013 request also includes funding for
a new medical countermeasure strategic investment (MCMSI) firm, as
proposed in the 2011 review. TFAH recommends $50 million to launch the
MCM Strategic Investor to provide business and financial resources to
biotech firms working to bring medical countermeasures into production.
Global Disease Detection.--Through integrated disease surveillance,
prevention and control activities, CDC's Global Disease Detection (GDD)
program aims to recognize infectious disease outbreaks faster, improve
the ability to control and prevent outbreaks, and to detect emerging
microbial threats, in support of the International Health Regulations.
In collaboration with host countries and the World Health Organization,
CDC has established seven GDD Regional Centers, which strengthen our
capacity to detect and respond to infectious disease outbreaks before
they reach American shores, such as respiratory syndromes, diarrheal
diseases, food-borne illnesses, and zoonotic diseases. TFAH recommends
a $6 million increase for the GDD Program in fiscal year 2013, which
would add at least two new Regional Centers, and enhance capacity at
two existing Regional Centers. This increase would broaden our
geographic coverage by establishing new developing Centers in West
Africa or South America. According to CDC, additional cuts to the
program could result in the closure of existing Regional Centers and
diminished capacity at other Regional Centers. Establishing a Center
requires years of negotiation, training, and nurturing of partnerships
between CDC and local health and governmental officials. Closing a
Center could result in that nation or region remaining closed to CDC
for years to come.
Conclusion
Investing in disease prevention is the most effective, common-sense
way to improve health. Hundreds of billions of dollars are spent each
year via Medicare, Medicaid, and other Federal healthcare programs to
pay for healthcare services once patients develop an acute illness,
injury, or chronic disease and present for treatment in our healthcare
system. A sustained and sufficient level of investment in public health
and prevention is essential to reduce high rates of disease and improve
health in the United States. Mr. Chairman, thank you again for the
opportunity to submit testimony on the urgent need to enhance Federal
funding for public health programs which can save countless lives and
protect our communities and our Nation.
______

Prepared Statement of The AIDS Institute
The AIDS Institute, a national public policy research, advocacy,
and education organization, is pleased to comment in support of
critical HIV/AIDS and Hepatitis programs as part of the fiscal year
2013 Labor, Health and Human Services, Education and Related Agencies
appropriation measure. We thank you for your support over the years,
and hope you will adequately fund them in the future in order to
provide for and protect the health of many Americans.
HIV/AIDS remains one of the world's worst health pandemics.
According to the Centers for Disease Control (CDC), over 620,000 people
have died of AIDS and there are 50,000 new infections each year in the
United States. An all-time high of approximately 1.2 million people in
the United States are living with HIV/AIDS. Persons of minority races
and ethnicities are disproportionately affected, as well as low income
people, with nearly 90 percent of those infected relying on publicly
funded healthcare.
The vast majority of the discretionary programs supporting domestic
HIV/AIDS efforts are funded through your Subcommittee. We are keenly
aware of current budget constraints and competing interests for limited
dollars, but programs that prevent and treat HIV are inherently in the
Federal interest as they protect the public health. The AIDS Institute,
working in coalition with others, has developed funding request numbers
for each of these programs. We ask that you do your best to adequately
fund them at the requested level.
National HIV/AIDS Strategy
The Obama administration is implementing a comprehensive National
HIV/AIDS Strategy (NHAS) that seeks to reduce new HIV infections,
increase access to care and improve health outcomes for people living
with HIV, as well as reduce HIV-related health disparities. The
Strategy sets ambitious goals and seeks a more coordinated national
response with a focus on communities where HIV is most prevalent and on
programs that work. In order to attain the goals, additional investment
in key areas will be needed and health reform must be implemented.
Centers for Disease Control and Prevention-HIV Prevention and Research
Fiscal year 2012: $786.2 million
Fiscal year 2013 community request: $1,311.2 million
The United States allocates only 3 percent of its domestic HIV/AIDS
spending on prevention. Investing in prevention today will save money
tomorrow. Preventing one infection will save approximately $355,000 in
future lifetime medical costs. Preventing all the new 50,000 cases in
just 1 year would translate into an astounding $18 billion in lifetime
medical costs.
The CDC is focused on carrying out several goals of the NHAS.
Specifically, (1) lowering the annual number of new infections by 25
percent; (2) reducing the transmission rate by 30 percent; and (3)
increasing from 79 to 90 the percentage of people living with HIV who
know their serostatus. In order to address the needs of affected
populations and the increased number of people living with HIV, CDC
needs additional funding. While an increase of over $500 million would
be needed to achieve the goals of the NHAS, The AIDS Institute supports
an increase of at least $40.2 million over fiscal year 2012, as
proposed by the President.
With this funding, the CDC will be able to implement its new, high-
impact approach to HIV prevention, based on the combination of
scientifically proven, cost-effective, and scalable interventions
directed to the right populations in the right areas. Funds will also
expand HIV testing.
Included in the President's CDC HIV budget proposal is $10 million
to restore a 25 percent cut to HIV Division of Adolescent and School
Health (DASH) programs. The CDC reports that young people aged 13-29
accounted for 39 percent of all new HIV infections in 2009. The AIDS
Institute strongly supports the restoration of these funds.
Ryan White HIV/AIDS Programs
Fiscal year 2012: $2,392.2 million
Fiscal year 2013 community request: $2,875.0 million
The centerpiece of the Government's response to caring for and
treating low-income people with HIV/AIDS is the Ryan White HIV/AIDS
Program. It now serves 577,000 low-income, uninsured, and underinsured
people. In fiscal year 2012, all but one part of the Program
experienced cuts in appropriated dollars. This is occurring at a time
of increased need and demand. Consider the following:
--Caseloads are increasing. People with HIV are living longer due to
lifesaving medications, and each year there are 50,000 new
infections with increased testing programs identifying
thousands of new people infected with HIV. As unemployment
rates climb, people are losing their employer-sponsored health
coverage.
--Recent research has proven that HIV treatment also serves as HIV
prevention. In 2011, a landmark study found that successful
anti-retroviral treatment of HIV reduced the risk of
transmitting the virus to others by up to 96 percent.
--There are significant numbers of people with HIV in the United
States who are not in care and receiving life-saving AIDS
medications. Recent CDC analysis reveals that only 41 percent
of the 1.2 million people living with HIV in the United States
are retained in HIV care and only 28 percent have a suppressed
viral load.
Specifically, The AIDS Institute requests the following:
Part A provides medical care and vital support services for persons
living with HIV/AIDS in the metropolitan areas most affected by HIV/
AIDS. We request an increase of $118.2 million, for a total of $789.5
million.
Part B Base provides essential services including diagnostic, viral
load testing and viral resistance monitoring, and HIV care to all 50
States, DC, Puerto Rico, and the territories. We are requesting an
$80.7 million increase, for a total of $502.9 million.
The AIDS Drug Assistance Program (ADAP) provides life-saving HIV
drug treatment to over 209,000 people, or about 46 percent of the HIV
positive people in care in the United States. The majority of whom are
people of color (65 percent) and very poor (75 percent are at or below
200 percent of the Federal poverty level). ADAPs are experiencing
unprecedented growth. Over the course of fiscal year 2011, HRSA reports
that nearly 15,000 new people were added to the program.
At the same time, State budgets have been stretched and the Federal
contribution to the program as a percentage has dropped resulting in a
crisis situation. According to NASTAD, State funding for ADAPs
increased 11.5 percent between fiscal year 2010 and fiscal year 2011,
and drug company rebates grew 18.43 percent to $618.9 million.
Because of a lack of funding, there are currently 3,097 people in
10 States on waiting lists, thousands more have been removed from the
program due to lowered eligibility requirements, and drug formularies
have been reduced. The AIDS Institute is very appreciative of the $15
million increase to ADAP in fiscal year 2012, but it is far from what
is currently required to meet the growing demand.
Recognizing the current ADAP crisis, on World AIDS Day, December 1,
2011, President Obama announced a transfer of $35 million from existing
health programs to ADAP. The President proposes to continue that
funding into fiscal year 2013 as part of his budget as well as an
increase of $66.7 million for a total of $1 billion. While this is
short of the actual need of $1,123.3 million, The AIDS Institute
strongly supports this increase.
Part C provides early medical intervention and other supportive
services to 255,000 people at 345 directly funded clinics. Recognizing
the shortage of resources for providing healthcare, on World AIDS Day
2011, President Obama redirected $15 million to Part C Programs. The
President is requesting to continue this funding in his fiscal year
2013 budget and increase it by $15 million. While still short of the
actual total need of $286 million, The AIDS Institute supports this
request.
Part D provides care to over 90,000 women, children, youth, and
families living with and affected by HIV/AIDS at 700 sites. This family
centered care promotes better health, prevents mother-to-child
transmission, and brings hard-to-reach youth into care. We are
disappointed that the President has proposed cutting Part D programs by
$7.6 million and ask that you reject this request. Rather, The AIDS
Institute supports a $10.1 million increase, for a total of $ 87.3
million.
Part F includes the AIDS Education and Training Centers (AETCs)
program and the Dental Reimbursement program. We are requesting a $7.7
million increase for the AETC program, for a total of $42.2 million,
and a $5.5 million increase for the Dental Reimbursement program, for a
total of $19 million.
National Institutes of Health-AIDS Research
Fiscal year 2012: $3.07 billion
Fiscal year 2013 community request: $3.5 billion
The NIH conducts research to better understand HIV and its
complicated mutations, discover new drug treatments, develop a vaccine
and other prevention programs such as microbicides, and ultimately
develop a cure. This research has already helped in the development of
many highly effective new drug treatments, however as neither a cure
nor a vaccine exists, and patients continue to build resistance to
medications, additional research must be carried out. We ask the
Committee to fund critical AIDS research at the community requested
level of $3.5 billion.
Comprehensive Sexuality Education
Since the vast majority of HIV infection occurs through sex, age
appropriate education on how HIV is transmitted and how one can prevent
transmission is critical. It is for this reason The AIDS Institute
supports the funding of the Teen Pregnancy Prevention Initiative for a
total of $130 million. Additionally, we oppose funding of abstinence
only education programs, which have proven to be ineffective.
Minority AIDS Initiative
The AIDS Institute supports increased funding for the Minority AIDS
Initiative (MAI), which funds services nationwide that address the
disproportionate impact that HIV has on communities of color. For
fiscal year 2013, we are requesting a total of $610 million.
Policy Riders
The AIDS Institute is opposed to using the appropriations process
as a vehicle to repeal or prevent the implementation of current law or
ban funding for certain activities or organizations. This includes
implementation of the Affordable Care Act. We urge you not to prevent
the implementation of programs, such as syringe exchange programs,
which are scientifically proven to prevent HIV and Hepatitis. The AIDS
Institute was disappointed the Federal funding ban was reinstated in
fiscal year 2012, and appreciates that this language was not included
in the President's budget.
Viral Hepatitis
There are over 5.3 million people in the United States infected
with viral hepatitis, but hepatitis prevention at the CDC is funded at
only $29.8 million. This is insufficient to provide basic health
services or to implement the HHS Viral Hepatitis Action Plan. While the
President's fiscal year 2013 budget flat funds overall CDC Hepatitis
programs at $29.7 million, it does include $10 million allocated from
the Prevention and Public Health Fund in fiscal year 2012 to continue
as appropriated dollars in fiscal year 2013. For fiscal year 2013, we
request an increase of $30.1 million for a total of $59.8 million.
The AIDS Institute asks that you give great weight to our testimony
as you develop the fiscal year 2013 appropriation bill. Should you have
any questions or comments, feel free to contact Carl Schmid, Deputy
Executive Director, The AIDS Institute, [email protected].
Thank you very much.
______

Prepared Statement of The Endocrine Society
The Endocrine Society is pleased to submit the following testimony
regarding fiscal year 2013 Federal appropriations for biomedical
research, with an emphasis on appropriations for the National
Institutes of Health (NIH). The Endocrine Society is the world's
largest and most active professional organization of endocrinologists
representing more than 15,000 members worldwide. Our organization is
dedicated to promoting excellence in research, education, and clinical
practice in the field of endocrinology. The Society's membership
includes thousands of researchers who depend on Federal support for
their careers and their scientific advances.
A half century of sustained investment by the United States Federal
Government in biomedical research has dramatically advanced the health
and improved the lives of the American people. The NIH specifically has
had a significant impact on the United States' global preeminence in
research and fostered the development of a biomedical research
enterprise that was at one time unrivaled throughout the world.
However, the dominance of the U.S. research enterprise is being sorely
tested with the consistently low funding increases allotted to the NIH
since 2003. Just one small example of this is the dramatic increase in
the percentage of manuscripts from investigators in Europe and Asia
that are published in our own journals.
While funding for basic research in the United States appears to be
slowing down, other countries are ramping up funding. China, for
instance, plans to increase investment in basic research by 26 percent
per year, and European countries will increase funding for basic
research over the next 7 years by 40 percent.\1\ The countries of
China, Ireland, Israel, Singapore, South Korea and Taiwan collectively
increased their research and development (R&D) investments by 214
percent between 1995 and 2004. The United States increased its total
R&D investments by 43 percent during the same period.\2\
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\1\ Dr. Francis Collin's Testimony to House Appropriations
Subcommittee. March 20, 2012
\2\ The Task Force on the Future of American Innovation. Measuring
the Moment: Innovation, National Security, and Economic
Competitiveness.
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Although some would argue that the investment of other countries in
R&D will benefit the United States through the subsequent discoveries,
innovation is one of the keys to the economic growth and stability of
our country. As President Obama stated, ``The key to our success--as it
has always been--will be to compete by developing new products, by
generating new industries, by maintaining our role as the world's
engine of scientific discovery and technological innovation. It's
absolutely essential to our future.'' Unfortunately, the President's
fiscal year 2013 budget request for the NIH does not reflect this
commitment.
The relative lack of support for funding the biomedical research
enterprise has consequences for our economy. Funding from the NIH
supported more than 432,000 jobs and generated more than $62.1 billion
in economic activity last year. More than 80 percent of its budget
directly funds ``extramural'' research performed by 325,000 scientists
at more than 3,000 institutions in all 50 States and the District of
Columbia.\3\ While the number of jobs supported is impressive, it is
unfortunately a decline from 2010, when the money spent by NIH
extramurally supported 487,900 jobs, approximately 55,000 more jobs
than in 2011. This is a direct illustration of the impact that lack of
sustained investment in the agency is beginning to have.
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\3\ United for Medical Research. NIH's Role in Sustaining the U.S.
Economy; A 2011 Update. March 20, 2012.
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In addition to creating jobs, funds from NIH grants put money back
into the local and State economies through salaries and purchase of
equipment, laboratory supplies, and vendor services. On average, for
each dollar of taxpayer investment, NIH grants generate $2.21 in
economic activity. As an example, UCLA generates almost $15 in economic
activity for each dollar, resulting in a $9.3 billion impact on the
region. The estimated economic impact of Baylor on the surrounding
community is more than $358 million, generating more than 3,300
jobs.\4\
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\4\ Federation of American Societies for Experimental Biology. NIH
Advocacy Slides: California, Texas.
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Although the NIH has a significant impact on our local, State, and
national economies, its primary purpose is to improve the health of the
American people. Each year, the NIH funds thousands of research grants,
facilitating the discovery of methods of prevention, treatment, and
cure for debilitating diseases that negatively impact the health of the
Nation's citizens and fuel rising healthcare costs. Nearly half of all
Americans have a chronic medical condition, and these diseases now
cause more than half of all deaths worldwide. Deaths attributed to
chronic conditions could reach 36 million by 2015 if the trend
continues unabated. In order to prevent and treat these diseases, and
save the country billions in healthcare costs, significant investment
in biomedical research will be needed.
During a time of economic instability, investment in biomedical
research makes sense because it leads to cures and treatments for
debilitating diseases while at the same time generating significant
economic activity for the local community.
The Endocrine Society remains deeply concerned about the future of
biomedical research in the United States without sustained support from
the Federal Government. The Society strongly supports increased Federal
funding for biomedical research in order to provide the additional
resources needed to enable American scientists to address the
burgeoning scientific opportunities and maintain the country's status
of the preeminent research enterprise. The Endocrine Society recommends
that NIH receive at least $32 billion in fiscal year 2013. This funding
recommendation represents the minimum investment necessary to avoid
further loss of promising research and global preeminence, while
allowing the NIH's budget to keep pace with biomedical inflation.
______

Prepared Statement of The Humane Society of the United States
On behalf of The Humane Society of the United States (HSUS) and the
Humane Society Legislative Fund (HSLF), and our joint membership of
over 11 million supporters nationwide, we appreciate the opportunity to
provide testimony on our top NIH funding priorities for the Labor,
Health and Human Services, Education and Related Agencies
Appropriations Subcommittee in fiscal year 2013.
breeding of chimpanzees for research
The HSUS requests that no Federal funding be appropriated for the
breeding of chimpanzees for research purposes. The National Institutes
of Health has had a moratorium on the breeding of federally owned and
federally supported chimpanzees in place since 1995, but evidence shows
that Government supported breeding still continues. However, given the
lack of necessity for chimpanzees as models for human disease, the
exorbitant costs of maintaining chimpanzees in laboratories, and the
ethical issues surrounding the use of chimpanzees, there is no
justification for the breeding of additional chimpanzees, who have a
lifespan of up to 60 years, for research; therefore, Federal funds
should not be used for this purpose.
Further basis of our request can be found below.
Background Information and Costs
In 1995, the National Institutes of Health implemented a moratorium
on the breeding of federally owned and supported chimpanzees, due to a
``surplus'' of chimpanzees and the excessive costs of lifetime care of
chimpanzees in laboratory settings.\1\ The cost of maintaining
chimpanzees in laboratories is exorbitant, up to $66 per day per
chimpanzee; over $1 million per chimpanzee over an individual's
approximately 60-year lifetime. Breeding of additional chimpanzees into
laboratories will only perpetuate and increase the burdens on the
Government in supporting and managing the chimpanzee research colony.
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\1\ NRC (National Research Council) (1997) Chimpanzees in research:
strategies for their ethical care, management and use. National
Academies Press: Washington, DC.
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The breeding moratorium was extended indefinitely in 2007. As a
result, none of the federally owned chimpanzees should have given birth
or sired infants since 1995. However, there is evidence that at least
one laboratory has used millions of Federal dollars in recent years to
support breeding of Government owned chimpanzees. According to records
provided by the New Iberia Research Center (NIRC) and the National
Institutes of Health, at least 132 infants were born to a federally
owned mother and/or federally owned father at NIRC between January 2000
and November 2011.
Some of the infants born at NIRC to federally owned parents were
used to fulfill a multi-year, multi-million dollar contract that the
laboratory has with an institute within NIH to provide NIH researchers
with ``4 to 12 disease free infants per year.'' This contract is
scheduled to end in fiscal year 2012 and this language will ensure that
it is not renewed.
In 2010, the Senate Committee on Appropriations included report
language asking NIH to look into allegations that 123 infants had been
born to at least one federally owned parent between 2000 and 2009 at
NIRC. NIH responded that they had could not find evidence that it was
happening to the extent that had been alleged and they believed NIRC
was compliant with the moratorium. However, in an article in the
journal Nature in November 2011, the director of NIRC admitted that he
did not dispute the allegations and is, in fact, breeding federally
owned chimpanzees.\2\
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\2\ Wadman, Meredith. (2011). Lab bred chimps despite ban. Nature,
Vol 479, Pages 453-454.
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Chimpanzees are not necessary for most current research
In December 2011, the Institute of Medicine (IOM) and National
Research Council released a report entitled ``Chimpanzees in Biomedical
and Behavioral Research: Assessing the Necessity''. The report found
that chimpanzees are ``largely unnecessary'' for research and, further,
could not identify any current area of research for which chimpanzees
are essential. The report also called for a sharp reduction in the use
of chimpanzees in biomedical and behavioral research and noted that the
``current trajectory indicates a decreasing scientific need for
chimpanzee studies due to the emergence of non-chimpanzee models and
technologies.'' \3\
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\3\ Institute of Medicine and National Research Council. (2011).
Chimpanzees in Biomedical and Behavioral Research: Assessing the
Necessity. National Academies Press: Washington, DC.
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It is also important to note that even in the decade prior to IOM's
findings, the vast majority of chimpanzees were not being used in any
studies but, rather, were being warehoused at taxpayer expense. A main
reason for implementing the breeding moratorium in the first place was
due to a ``surplus'' of chimpanzees after it turned out that
chimpanzees were not ideal models for HIV/AIDs.\1\
Given the obvious downward trend of chimpanzee research, it makes
little sense to invest limited research resources into any further
breeding.
Concerns regarding chimpanzee care in laboratories
A 9 month undercover investigation by The HSUS at University of
Louisiana at Lafayette New Iberia Research Center (NIRC)--the largest
chimpanzee laboratory in the world--revealed some chimpanzees living in
barren, isolated conditions and documented over 100 alleged violations
of the Animal Welfare Act at the facility regarding conditions for and
treatment of chimpanzees. The U.S. Department of Agriculture (USDA) and
NIH's Office of Laboratory Animal Welfare (OLAW) launched formal
investigations into the facility and NIRC paid an $18,000 stipulation
for violations of the Animal Welfare Act.
Aside from the HSUS investigation, inspections conducted by the
USDA demonstrate that basic chimpanzee standards are often not being
met. Inspection reports for other federally funded chimpanzee
facilities have reported violations of the Animal Welfare Act in recent
years, including the death of a chimpanzee during improper transport,
housing of chimpanzees in less than minimal space requirements,
inadequate environmental enhancement, and/or general disrepair of
facilities. These problems add further argument against the breeding of
even more chimpanzees into this system.
Ethical and public concerns about chimpanzee research
Chimpanzee research raises serious ethical issues, particularly
because of their extremely close similarities to humans in terms of
intelligence and emotions. Americans are clearly concerned about these
issues: 90 percent believe it is unacceptable to confine chimpanzees
individually in Government-approved cages (as we documented during our
investigation at NIRC); 71 percent believe that chimpanzees who have
been in the laboratory for over 10 years should be sent to sanctuary
for retirement \4\; and 54 percent believe that it is unacceptable for
chimpanzees to ``undergo research which causes them to suffer for human
benefit.'' \5\
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\4\ 2006 poll conducted by the Humane Research Council for Project
Release & Restitution for Chimpanzees in laboratories.
\5\ 2001 poll conducted by Zogby International for the Chimpanzee
Collaboratory.
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We respectfully request the following bill or committee report
language:

``No funds made available in this Act, or any prior Act, may be
used for grant agreements or contracts with facilities defined in 7
U.S.C. Sec. 2132(e) if those agreements or contracts allow or encourage
the breeding of chimpanzees.''

We appreciate the opportunity to share our views for the Labor,
Health and Human Services, Education and Related Agencies
Appropriations Act for Fiscal Year 2013. We hope the Committee will be
able to accommodate this modest request that will save the Government a
substantial sum of money, benefit chimpanzees, and allay some concerns
of the public at large. Thank you for your consideration.
alternatives to the use of chimpanzees in prophylactic hepatitis c
vaccine efficacy research
In their December 2011 report entitled ``Chimpanzees in Biomedical
and Behavioral Research: Assessing the Necessity'', the Institute of
Medicine found that chimpanzees are ``largely unnecessary'' for current
research and pointed to several available alternatives to the use of
chimpanzees. The efficacy testing of a prophylactic hepatitis C
vaccine, once developed, is the only area for which the committee
wasn't able to reach consensus as to whether chimpanzees are necessary
for this purpose. However, the committee pointed to several
alternatives which are currently in development that could eliminate
any need for chimpanzees in this type of research. Given the financial
and ethical costs of maintaining chimpanzees in laboratories, coupled
the serious doubts about the necessity of chimpanzees for such
research, The Humane Society of the United States believes development
of alternatives for this purpose should be an urgent priority for the
National Institutes of Health. Not only would this ensure better use of
limited research funds, but will also serve to move scientific
innovation forward.
We respectfully request the following committee report language.

``The Committee supports the immediate implementation and
prioritization of the development of non-chimpanzee alternatives for
hepatitis C prophylactic vaccine efficacy studies--as supported by the
recent IOM report entitled ``Chimpanzees in Biomedical and Behavioral
Research: Assessing the Necessity.''
high throughput screening, toxicity pathway profiling, and biological
interpretation of findings
national institutes of health--office of the director
In 2007, the National Research Council published its report titled
``Toxicity Testing in the 21st Century: A Vision and a Strategy.'' This
report catalyzed collaborative efforts across the research community to
focus on developing new, advanced molecular screening methods for use
in assessing potential adverse health effects of environmental agents.
It is widely recognized that the rapid emergence of omics technologies
and other advanced technologies offers great promise to transform
toxicology from a discipline largely based on observational outcomes
from animal tests as the basis for safety determinations to a
discipline that uses knowledge of biological pathways and molecular
modes of action to predict hazards and potential risks.
In 2008, NIH, NIEHS and EPA signed a memorandum of understanding
\6\ to collaborate with each other to identify and/or develop high
throughput screening assays that investigate ``toxicity pathways'' that
contribute to a variety of adverse health outcomes (e.g., from acute
oral toxicity to long-term effects like cancer). In addition, the MOU
recognized the necessity for these Federal research organizations to
work with ``acknowledged experts in different disciplines in the
international scientific community.'' Much progress has been made,
including FDA joining the MOU, but there is still a significant amount
of research, development and translational science needed to bring this
vision forward to where it can be used with confidence for safety
determinations by regulatory programs in the Government and product
stewardship programs in the private sector. In particular, there is a
growing need to support research to develop the key science-based
interpretation tools which will accelerate using 21st century
approaches for predictive risk analysis. We believe the Office of the
Director at NIH can play a leadership role for the entire U.S.
Government by funding both extramural and intramural research.
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\6\ http://www.genome.gov/pages/newsroom/currentnewsreleases/
ntpncgcepamou121307finalv2.pdf.
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We respectfully request the following committee report language,
which is supported by The HSUS, HSLF, The Procter & Gamble Company, and
the American Chemistry Council.
``NIH Director
``The Committee supports NIH's leadership role in the creation of a
new paradigm for chemical risk assessment based on the incorporation of
advanced molecular biological and computational methods in lieu of
animal toxicity tests. NIH has indicated that development of this
science is critical to several of its priorities, from personalized
medicine to tackling specific diseases such as cancer and diabetes. The
Committee encourages NIH to continue to expand its extramural support
for the use of human biology-based experimental and computational
approaches in health research to further define toxicity and disease
pathways and develop tools for their integration into evaluation
strategies. Extramural and intramural funding should be made available
for the evaluation of the relevance and reliability of Tox21 methods
and prediction tools to assure readiness and utility for regulatory
purposes, including pilot studies of pathway-based risk assessments.
The Committee requests NIH provide a report on associated funding in
fiscal year 2013 for such activity and a progress report of Tox21
activities in the congressional justification request, featuring a 5-
year plan for projected budgets for the development of Tox21 methods,
including prediction models, and activities specifically focused on
establishing scientific confidence in them for regulatory. The
Committee also requests NIH prioritize an additional (1-3 percent) of
its research budget within existing funds for such activity.''
______

Prepared Statement of the Tri-Council for Nursing
The Tri-Council for Nursing, comprising the American Association of
Colleges of Nursing, the American Nurses Association, the American
Organization of Nurse Executives, and the National League for Nursing,
respectfully requests $251 million for the Nursing Workforce
Development programs authorized under Title VIII of the Public Health
Service Act (42 U.S.C. 296 et seq.) in fiscal year 2013.
The Tri-Council is a long-standing nursing alliance focused on
leadership and excellence in the nursing profession. As the Nation
looks toward restructuring the healthcare system by focusing on
expanding access, decreasing cost, and improving quality, a significant
investment must be made in strengthening the nursing workforce, a
profession which the U.S. Bureau of Labor Statistics (BLS) projects a
growth of 26 percent by 2020.
Notwithstanding the economic challenges facing our Nation today,
the BLS projects there will be 712,000 new nursing jobs created between
2010 and 2020. This workforce growth is expected to continue as the
demand for nursing care in traditional acute care settings and the
expansion of non-hospital settings such as home care and long-term care
accelerates. The BLS projections further explain the need for 495,500
replacements in the nursing workforce, bringing the total number of job
openings for nurses due to growth and replacements to 1.2 million by
2020.
As our Nation regains its economic foothold, the Tri-Council urges
the Subcommittee to focus on the larger context of building the nursing
capacity needed to meet the increasing healthcare demands of our
Nation's population. Starting on January 1, 2011, baby boomers began
turning 65 at the rate of 10,000 a day. With them comes the increased
demand for healthcare and services of an aging population, which will
swell the pressure on the healthcare system, especially when coupled
with near epidemic growth in childhood obesity, diabetes, and other
chronic diseases experienced among our country's populations.
Moreover, the acute nurse faculty shortage is a primary reason why
schools of nursing across the country turn away thousands of qualified
applications each year. The demand for nurses and the faculty who
educate them is a serious impediment to improving the health of
America. Nurses continue to be the largest group of healthcare
providers whose services are directly linked to quality and cost-
effectiveness. The Tri-Council is grateful to the Subcommittee for its
past commitment to Title VIII funding and respectfully asks for a
continued long-term investment that will build the nursing workforce
necessary to deliver the quality, affordable care envisioned in health
reform.
a proven solution: nursing workforce development programs
The Nursing Workforce Development programs, authorized under Title
VIII of the Public Health Service Act (42 U.S.C. 296 et seq.), have
helped build the supply and distribution of qualified nurses to meet
our Nation's healthcare needs since 1964. Over the last 48 years, the
original programs as well as newly added and expanded programs have
addressed all aspects of supporting the workforce--education, practice,
retention, and recruitment. They have bolstered nursing education at
all levels; from entry-level preparation through graduate study, and
provide support for institutions that educate nurses for practice in
rural and medically underserved communities. A description of the Title
VIII programs and their impact are included below.
--Advanced Nursing Education (ANE) Grants (Sec. 811) support the
preparation of registered nurses (RNs) in master's and doctoral
nursing programs. The ANE grants help prepare our Nation's
nurse practitioners, clinical nurse specialists, nurse
midwives, nurse anesthetists, nurse educators, nurse
administrators, nurses in executive practice, public health
nurses, and other nursing specialists requiring advanced
nursing education. In fiscal year 2010, these grants supported
the education of 7,863 students.
--Advanced Education Nursing Traineeships (AENT) assist graduate
nursing students by providing full or partial reimbursement for
the costs of tuition, books, program fees, and reasonable
living expenses. Funding for the AENTs supports the education
of future nurse practitioners, clinical nurse specialists,
nurse midwives, nurse anesthetists, nurse educators, nurse
administrators, public health nurses, and other nurse
specialists requiring advanced education.
--Nurse Anesthetist Traineeships (NAT) supports the education of
students in nurse anesthetist programs. In some States,
certified registered nurse anesthetists are the sole anesthesia
providers in almost 100 percent of rural hospitals. Much like
the AEN Traineeships, the NAT provides full or partial support
for the costs of tuition, books, program fees, and reasonable
living expenses.
--In fiscal year 2010, the AEN Traineeship and the NAT supported
12,325 nursing students.
--Nursing Workforce Diversity Grants (Sec. 821) prepare students from
disadvantaged backgrounds to become nurses. This program awards
grants and contract opportunities to schools of nursing for a
variety of clinical training facilities to address nursing
educational needs for not only disadvantaged students but also
racial and ethnic minorities underrepresented in the nursing
profession. In fiscal year 2010, the program supported 10,361
students.
--Nurse Education, Practice, Quality and Retention Grants (Sec. 831
and Sec. 831A) help schools of nursing, academic health
centers, nurse-managed health centers, State and local
governments to strengthen nursing education programs. In fiscal
year 2010, this program supported 4,860 undergraduate nursing
students.
--Nurse Loan Repayment and Scholarship Program (Sec. 846, Title VIII,
PHSA) provides grants to students that pay up to 85 percent of
a student's loan in return for at least 3 years of service in a
designated health shortage area or in an accredited school of
nursing. In fiscal year 2010, the Nurse Loan Repayment and
Scholarship Programs supported 1,304 nurses and nursing
students.
--Nurse Faculty Loan Program (Sec. 846A, Title VIII, PHSA) provides
up to 85 percent of loan cancellation if the student agrees to
a 4-year teaching commitment in a school of nursing. In fiscal
year 2010, these grants supported the education of 1,551 future
nurse educators.
--Comprehensive Geriatric Grants (Sec. 855, Title VIII, PHSA provide
support to nursing students specializing in care for the
elderly. These grants may be used to educate RNs who will
provide direct care to older Americans, develop and disseminate
geriatric curriculum, prepare faculty members, and provide
continuing education.
Our Nation is faced with a growing healthcare crisis that must be
addressed on many fronts. Nurses are an important part of the solution
to the crisis of cost, burden of disease, and access to quality care.
To meet this challenge, funding of proven Federal programs such as
Title VIII will help ease the demand for RNs. The Tricouncil
respectfully requests your support of $251 million for the Title VIII
Nursing Workforce Development Programs in fiscal year 2013.
______

Prepared Statement of The Society for Healthcare Epidemiology of
America and the Association for Professionals in Infection Control and
Epidemiology
The Society for Healthcare Epidemiology of America (SHEA) and the
Association for Professionals in Infection Control and Epidemiology
(APIC) thank you for this opportunity to submit testimony on Federal
efforts to eliminate preventable healthcare-associated infections
(HAIs). HAIs are among the leading causes of preventable death in the
United States, accounting for an estimated 1.7 million infections and
99,000 associated deaths annually according to the CDC's most recent
official estimates. In addition to the substantial human suffering,
HAIs contribute $28 to $33 billion in excess healthcare costs each
year.
The good news is that some HAIs are on the decline as a result of
recent advances in the understanding of how to prevent certain
infections. In particular, bloodstream infections associated with
indwelling central venous catheters, or ``central lines,'' are largely
preventable when healthcare providers use the CDC infection prevention
recommendations in the context of a performance improvement
collaborative. Over the past decade, the Agency for Healthcare Research
and Quality (AHRQ) has funded numerous projects targeting HAI
prevention that have led to the successful reduction of central line-
associated blood stream infections (CLABSIs) in hospital intensive care
units (ICUs). Healthcare professionals have reduced these infections in
ICU patients by 58 percent since 2001, which represents up to 27,000
lives saved. In spite of this notable progress, there is a great deal
of work to be done toward the goal of HAI elimination.
To build and then sustain these winnable battles against HAIs, we
urge you, in fiscal year 2013, to support the CDC Coalition's request
for $7.8 billion for the CDC's ``core programs.'' We are concerned
about the President's fiscal year 2013 budget proposal that would
reduce the CDC's budget authority by $664 million, for a total
reduction of $1.4 billion since fiscal year 2010. At the same time, the
administration and Congress increasingly rely on the Prevention and
Public Health Fund and funding transfers from other agencies to
backfill the cuts to CDC's budget authority. We believe that Congress
should prioritize funding for the activities and programs supported by
CDC that are essential to protect the health of the American people.
We especially want to highlight our support for the $27.5 million
in the President's budget for the CDC's National Healthcare Safety
Network (NHSN). These funds are critically needed to ensure high-
quality monitoring of HAI prevalence as well as antibiotic usage in the
U.S. Collection of accurate, timely, and complete data is necessary to
measure the true extent of the problem, develop evidence-based HAI
prevention strategies and monitor their effectiveness. In addition,
consistent, high quality, scientifically sound and validated data are
necessary to be reported at the State and Federal level to ensure that
accurate data are available to evaluate the HHS National Action Plan to
Prevent HAIs progress as well as to support transparency to the public,
allowing for fair comparisons between facilities. Such data are
critical to understanding patterns of HAI prevalence, which help public
health and healthcare practitioners better coordinate prevention
efforts and measure reduction in HAIs. Since NHSN is the only system
with this capability, the majority of States have adopted it for
legislatively mandated public reporting and most inpatient facilities
reimbursed by Medicare are required to report specified HAIs via NHSN.
Data from other care settings and additional infection types are being
phased in. Thus, the number of facilities, types of facilities and
number of infection indicators are growing exponentially.
Despite the system's importance in our Nation's efforts to monitor
and prevent HAIs, funding for NHSN has been flat since fiscal year
2010. Without additional funding, increasing the number of facilities
reporting into NHSN from 3,000 in 2010 to an expected 16,500 in 2013
will exceed the capacity of the system. The requested funding for NHSN
will allow CDC to modernize the NHSN information technology platform to
enhance electronic data collection, reduce the burden of data
collection and allow facilities, States and Federal agencies to focus
on infection prevention and control. The NHSN serves as the foundation
for prevention and the development of innovative, evidence-based HAI
prevention strategies. Federal resources are required to ensure
accurate, timely, and complete data are reported to NHSN and become
available to the public. We urge you to support the requested funding
level for NHSN to allow the CDC, States and other Federal agencies to
use this tool to carry out their mission to ensure the public's health,
assure and improve the quality of care and enhance patient safety.
CDC's Antimicrobial Resistance activities are included within the
Emerging and Zoonotic Infectious Disease programs' proposed budget.
SHEA and APIC commend the CDC for creating an expert advisory group on
antimicrobial resistance. Continued support for the Emerging Infections
Program (EIP) is also critical as the HAI component engages a network
of State health departments and their academic medical center partners
to help answer important questions about emerging HAI threats, advanced
infection tracking methods and antibiotic resistance in the United
States. Ensuring the effectiveness of antibiotics well into the future
is vital for the Nation's public health, particularly at this time when
our current therapeutic options are dwindling and research and
development of new antibiotics is lagging. As bacteria and other micro-
organisms are becoming more resistant to antimicrobials, it is
essential that the CDC maintains the ability to monitor organism
resistance in healthcare as it is one of the most pressing problems and
greatest challenges that healthcare providers will confront during the
coming decade.
It is critical that antimicrobial stewardship programs are adopted
in all settings where antimicrobials are used. SHEA and APIC applaud
the CDC for its Get Smart for Healthcare campaign, which aims to
optimize antibiotic use by encouraging adherence to appropriate
prescribing guidelines in hospitals and long-term care facilities and
we encourage its continued support. We also strongly support the NHSN's
Antibiotic Use Module. Launched in May 2011, it is the first effort in
the United States to define national data on antibiotic use in
healthcare institutions. Because single payer systems have the
advantage of making it easier to track antimicrobial resistance, the
United States stands at a disadvantage to European countries in this
regard.
SHEA and APIC are strongly supportive of the CDC Prevention
Epicenters Program, a collaboration of CDC's Division of Healthcare
Quality Promotion (DHQP) and five academic medical centers that conduct
innovative infection control and prevention research to address
important scientific questions regarding the prevention of HAIs,
antibiotic resistance and other adverse healthcare events. The
Epicenters Program is funded through the NHSN and has provided a unique
forum in which academic leaders in healthcare epidemiology can partner
directly with each other and with CDC subject matter experts. The
resultant emphasis on multicenter collaborative research projects,
through which investigators work together as a group, allows for
research that in many cases, would not have been possible for a single
academic center. The knowledge gained through the Epicenters Program
has been highly valuable to the field, and has resulted in over 150
publications in peer-reviewed journals on a wide range of HAI
prevention topics.
Existing HAI prevention strategies are limited by the current state
of science, and as a result cannot prevent all HAIs even when fully
implemented. As we strive to eliminate all preventable HAIs, we need to
identify the gaps in our understanding of what is actually preventable.
This distinction is critical to help guide subsequent research
priorities and to help set realistic expectations. SHEA and APIC
believe in the importance of conducting basic, epidemiological and
translational studies to fill basic and clinical science gaps. While
health services research (i.e., successful implementation of strategies
already known or suspected to be beneficial) may provide some immediate
short-term benefit, to achieve further success, a substantial
investment in basic science, translational medicine, and epidemiology
is needed to permit effective and precise, interventions that prevent
HAIs. Moreover, experts in the field (Epidemiologists and Infection
Preventionists), in collaboration with CDC and AHRQ, should be engaged
in order to further define and prioritize the research agenda.
SHEA and APIC strongly support the proposed investment of $34
million by AHRQ in fiscal year 2013 to reduce and prevent healthcare-
associated infections (HAIs). This total includes $11.6 million in HAI
research grants to improve the prevention and management of HAIs and
$22.4 million in HAI contracts including nationwide implementation of
Comprehensive Unit-based Safety Program (CUSP). AHRQ-funded projects
related to HAI prevention involve the implementation of CUSP, which is
based on an Intensive Care Unit Safety Reporting System developed by
the Johns Hopkins University Quality and Safety Research Group,
Baltimore, Maryland. SHEA and APIC are very pleased that AHRQ is
expanding the CUSP program to all 50 States, extending its reach to
other settings in addition to ICUs, and broadening the focus to address
other types of infections, such as catheter-associated urinary tract
infections (CAUTIs). Our organizations are participating in the CUSP-
CAUTI initiative through identification of expert members to serve on a
national network of clinical faculty working to improve patient safety
through dissemination of educational modules across the Nation.
Despite the fact that HAIs are among the top 10 annual causes of
death in the United States, support for basic, translational and
epidemiological HAI research has not been a priority of the National
Institutes of Health (NIH). The reality is that scientists studying
these infections receive relatively less funding than colleagues in
many other disciplines. The limited availability of Federal funding to
study HAIs has the effect of steering young investigators interested in
pursuing research in this area toward other, better-funded fields. This
severely hampers the HAI clinical research enterprise at a time when it
should be expanding. The current convergence of scientific, public and
legislative interest in reducing rates of HAIs can provide the
necessary momentum to address and answer important questions in HAI
research and move our discipline to the next level of evidence-based
patient safety. SHEA and APIC urge your support of increased NIH
funding for basic, translational and implementation research
proportionate to the clinical significance of HAIs.
Although we are pleased that HHS' Office of the Assistant Secretary
for Health (OASH) has expressed support for the implementation of HAI-
related reforms through the overall OASH budget, we believe having
dedicated funding of $5 million for the HAI Action Plan is the best way
to ensure that this critical initiative is adequately resourced. SHEA
and APIC members have been actively engaged in this partnership for HAI
prevention under the leadership of HHS Assistant Secretary for Health,
Dr. Howard Koh and Deputy Assistant Secretary for Healthcare Quality,
Dr. Don Wright. The development of the HAI Action Plan and the funding
to support these activities has been critical to the effort to build
support for a coordinated Federal plan to prevent infections.
Additionally, we believe strongly that the CDC is the agency with the
necessary expertise to define appropriate metrics through which the HAI
Action Plan can best measure its efforts.
SHEA and APIC also request that the Subcommittee approve $16.1
million for the Centers for Medicare and Medicaid Services (CMS)
surveys of ambulatory surgical centers (ASCs) as part of the budget
request addressing direct survey costs. This funding will allow the CMS
to continue the enhanced survey process--developed jointly with the
CDC--to target infection control deficiencies in ASCs every 4 years. We
believe this enhanced survey process is a good way of ensuring that
basic infection prevention practices are followed, thus avoiding
potential outbreaks due to unsafe practices.
We thank you for the opportunity to submit testimony and greatly
appreciate this subcommittee's assistance in providing the necessary
funding for the Federal Government to have a leadership role in the
effort to eliminate HAIs.
About SHEA.--SHEA has helped define best practices in healthcare
epidemiology worldwide since its founding in 1980. The Society works to
achieve the highest quality of patient care and healthcare personnel
safety in all healthcare settings by applying epidemiologic principles
and prevention strategies to a wide range of quality-of-care issues.
SHEA is a growing organization, strengthened by its membership of 2,200
in all branches of medicine, public health, and healthcare
epidemiology. SHEA members are committed to implementing evidence-based
strategies to prevent HAIs and improve patient safety, and have
scientific expertise in evaluating potential strategies to accomplish
this goal.
About APIC.--APIC's mission is to create a safer world through
prevention of infection. The association's more than 14,000 members
direct infection prevention programs that save lives and improve the
bottom line for hospitals and other healthcare facilities. APIC
advances its mission through patient safety, implementation science,
competencies and certification, advocacy, and data standardization.
______

Prepared Statement of the University of North Dakota and North Dakota
State University
On behalf of the University of North Dakota and North Dakota State
University, thank you for the opportunity to submit our written
testimony regarding the fiscal year 2013 funding for the National
Institutes of Health (NIH) Institutional Development Award (IDeA)
program. We respectfully request your support of no less than $310
million for this critically important program. We further request that
the Subcommittee gives serious consideration to legislative language
which would direct that future NIH budgets include funding for the IDeA
program that reaches no less than 1 percent of the total NIH budget.
IDeA was authorized by the 1993 NIH Revitalization Act (Public Law 103-
43) and funds only merit-based, peer reviewed research that meets NIH
research objectives in the 23 IDeA States and Puerto Rico.
The States eligible for IDeA funding are defined as ``all States/
commonwealths with a success rate for obtaining NIH grant awards of
less than 20 percent over the period of 2001-2005 or received less than
an average of $120 million per year during that time period.''
Currently this includes 23 States and Puerto Rico--nearly half of the
States. Funding from this critical capacity-building program has been a
key part of the growth in research capacity and impact at the two North
Dakota research universities in recent years.
Funding for the IDeA program in fiscal year 2012 was $276.48
million. The total budget for NIH in fiscal year 2012 was $30.86
billion; thus in fiscal year 2012, the IDeA program--funding
competitively awarded biomedical research in nearly half the Nation--
comprised only 0.89 percent of the entire NIH budget. The IDeA program
exists because the 23 eligible States overall receive less than 20
percent of NIH's extramural funding. The proposed reduction in the
President's fiscal year 2013 budget request of $51 million represents a
staggering 18 percent cut to the budget of the IDeA program, but
represents only 0.16 percent of the entire proposed NIH budget. Making
such a serious, disproportionate cut to a program designed to aid
small, rural States is manifestly unfair. This program is small in the
overall scheme of things at NIH, but huge for the States that compete
for these funds. Our requested funding level of $310 million represents
only 1 percent of the President's total fiscal year 2013 budget request
for NIH.
Our State, North Dakota, has benefited immensely from the
competitive funding available through the IDeA program in the form of
COBRE (Center for Biomedical Research Excellence) and INBRE (IDeA
Networks of Biomedical Research Excellence) grants, and we anticipate
submitting a joint proposal in September of this year for an IDeA
Program Infrastructure for Clinical and Translational Research (IDeA
CTR) grant.
At the University of North Dakota, we have been awarded funding for
two phases of a COBRE grant supporting research on neurodegenerative
diseases. We have been notified informally that we can expect funding
for Phase III, the final phase of a COBRE project, during fiscal year
2012. North Dakota has one of the largest populations of the extremely
old in the Nation (second only to Florida in the percentage of its
citizens over 85 years of age), and high rates of neurodegenerative
diseases such as Alzheimer's, Parkinson's, and multiple sclerosis. As
an example of the impact of this funding and the research capacity it
has built, externally funded research at the University of North
Dakota's School of Medicine and Health Sciences has grown
substantially. Prior to COBRE funding, in fiscal year 2002, the SMHS
received about $12 million in external funding; by fiscal year 2011,
this had increased to $20.5 million, an increase of 71 percent. In
2010, when UND developed a new strategic plan for research,
neuroscience was identified as an existing strength on which to build
further.
Thus, the neurobiology COBRE grant is achieving its intended
purpose of expanding our research capacity and our ability to compete
for Federal funding. That research is directed at problems of direct
interest to our citizenry, but also to the rest of the United States.
The University of North Dakota has submitted a proposal for an
additional COBRE grant on the topic of epigenetics. Epigenetics is the
study of how environmental factors influence the expression of our
genes; in many cases these changes in gene expression can then be
inherited by the next generation. Although possible funding for this
COBRE grant application has not yet been determined, we believe that
the submitted grant is a highly competitive one that addresses a
burgeoning area of research interest and importance.
North Dakota State University has received COBRE grants to fund
research at its Center for Protease Research and the Center for Visual
and Cognitive Neuroscience. COBRE funding supported important chemical
and biological research at the Center for Protease Research relating to
the roles played by enzymes that break down proteins in cancer and
asthma.
COBRE funding at NDSU's Center for Visual and Cognitive
Neuroscience facilitated research illuminating and ameliorating
conditions such as disordered perception, cognition, emotion, attention
and executive function which are hallmarks of debilitating and costly
disease syndromes (e.g. ADHD, ARMD, agnosia, amblyopia, autism,
depression, dementia, dyslexia, hemi neglect, multiple sclerosis,
Parkinson's disease, PTSD, and schizophrenia).
COBRE funding has contributed to the success that both NDSU's
Centers have achieved in obtaining competitive grants from privates
sources and a variety of Federal agencies. Additionally, the COBRE
grants led to the publication of NDSU's research findings in
international, refereed publications and have aided in the recruitment
of new faculty and increased enrollments in related graduate and
undergraduate programs.
Another critically important IDeA program is INBRE, which provides
funding to build the biomedical workforce through activities ranging
from outreach to elementary school children to creating opportunities
for undergraduates to engage in research. This program has provided
support for undergraduate students at 2- and 4-year colleges in North
Dakota to participate in research during the summer at their home
institutions. This program includes two tribal colleges and serves
between 70 and 100 students each year. Another program at the
University of North Dakota serves about 60 undergraduates per year and
applications routinely exceed the number of slots that are available.
These programs are critical for keeping students in the pipeline for
the STEM (science, technology, engineering, and math) workforce.
Studies have repeatedly shown that engaging undergraduates in original
research is a powerful tool for retaining students in college so that
they graduate in a timely way.
A major emphasis has been on outreach programs to Native American
students, the minority group that is most under-represented in the
fields of science, engineering, and math. Between 25 and 35 Native
American students in grades 7-12 participate each year in a program
that uses traditional Native American tools to teach science. As many
as 40 students from tribal colleges are funded each year to visit UND
and learn about opportunities to transfer to the university and
complete their 4-year degrees. INBRE provides support for transfer
students from tribal colleges through the Pathway program, a 6-week
summer program that prepares participants for advanced coursework in
science. Pathway students can also receive tuition waivers from the
university. INBRE funding is also provided to support the American
Indian Health Research Forum on the UND campus each year; this forum
attracts attendees from across the Nation.
We expect to submit a joint proposal from the two North Dakota
research universities this fall to help us develop a joint center for
clinical and translational research. The basic science departments in
our School of Medicine and Health Sciences have grown as a result of
COBRE and INBRE programs. Like other States, we need to move the
results of that research to patients' bedsides. If we are successful in
competing for a CTR grant, we will be able to build the necessary
infrastructure that we need to do so.
North Dakota, with a population of 672,591 according to the 2010
Census, is the smallest of all the IDeA States. Yet, our School of
Medicine and Health Sciences graduates a disproportionately large
number of primary care physicians who practice in rural areas, and 20
percent of all Native American physicians in the United States are
graduates of the University of North Dakota. This medical school is
clearly making important contributions to healthcare for underserved
populations. Like all medical schools, it must have a healthy research
program underpinning its training of physicians, and funding from the
IDeA program is critical to the health of that program and to building
research capacity for the future.
The IDeA States produce STEM graduates at the same per capita rate
as States with larger populations and larger research portfolios. The
students from IDeA States need and deserve the same exposure to
research as students in larger States. If the proposed reductions in
the President's fiscal year 2013 budget request for the IDeA program
are not rejected, North Dakota and other small, mostly rural States,
will receive a major setback in their efforts to increase their
capacity to undertake biomedical research and to train the next
generation of scientists who are critical for the health of our Nation
and our economy.
The IDeA program is absolutely critical not only for the University
of North Dakota and North Dakota State University, but also for the
biomedical research capacity and capability of research institutions
nationwide. We sincerely appreciate the Subcommittee's ongoing support
of the IDeA program and request that you give full consideration to our
recommendations and fiscal year 2013 request of no less than $310
million for the National Institutes of Health IDeA program. We further
request that the Subcommittee considers legislative language directing
that future NIH budgets include funding for the IDeA program that
reaches no less than 1 percent of the total NIH budget.
Contact Information
Phyllis E. Johnson, Ph.D. Vice President for Research and Economic
Development, University of North Dakota. 264 Centennial Drive, Stop
8367, Grand Forks, North Dakota 58201.
Joshua Wynne, M.D., M.B.A., M.P.H. Vice President for Health
Affairs and Dean of the School of Medicine and Health Sciences,
University of North Dakota. 501 N. Columbia Road, Stop 9037, Grand
Forks, ND 58202.
Philip Boudjouk, Ph.D. Vice President for Research, Creative
Activities, and Tech Transfer, North Dakota State University. Research
1, Dept. 4000, PO Box 6050, Fargo, ND 58108-6050.
______

Prepared Statement of the US Hereditary Angioedema Association
Thank you for the opportunity to present the views of the US
Hereditary Angioedema Association (US HAEA) regarding the importance of
Hereditary Angioedema (HAE) public awareness activities and research.
The US HAEA is a nonprofit patient advocacy organization founded in
1999 to help those suffering with HAE and their families to live
healthy lives. The Association's goals were, and remain, to provide
patient support, advance HAE research and find a cure. The US HAEA
provides patient services that include referrals to HAE knowledgeable
healthcare providers, disease information and peer-to-peer support. US
HAEA also provides research funding to scientific investigators to
increase the HAE knowledge base and maintains an HAE patient registry
to support ground-breaking research efforts. Additionally, US HAEA
provides disease information materials and hosts forums to educate
patients and their families, healthcare providers, and the general
public on HAE.
HAE is a rare and potentially life-threatening inherited disease
with symptoms of severe, recurring, debilitating attacks of edema
(swelling). HAE patients have a defect in the gene that controls a
blood protein called C1-inhibitor, so it is also more specifically
referred to as C1-inhibitor deficiency. This genetic defect results in
production of either inadequate or nonfunctioning C1-inhibitor protein.
Because the defective C1-inhibitor does not adequately perform its
regulatory function, a biochemical imbalance can occur and produce an
unwanted peptide--called bradykinin--that induces the capillaries to
release fluids into surrounding tissues, thereby causing swelling.
People with HAE experience attacks of severe swelling that affect
various body parts including the hands, feet, face, airway (throat) and
intestinal wall. Swelling of the throat is the most life-threatening
aspect of HAE, because the airway can close and cause death by
suffocation. Studies reveal that more than 50 percent of patients will
experience at least one throat attack in their lifetime.
HAE swelling is disfiguring, extremely painful and debilitating.
Attacks of abdominal swelling involve severe and excruciating pain,
vomiting, and diarrhea. Because abdominal attacks mimic a surgical
emergency, approximately one-third of patients with undiagnosed HAE
undergo unnecessary surgery. Untreated, an average HAE attack lasts
between 24 and 72 hours, but some attacks may last longer and be
accompanied by prolonged fatigue.
The majority of HAE patients experience their first attack during
childhood or adolescence. Most attacks occur spontaneously with no
apparent reason, but anxiety, stress, minor trauma, medical, surgical,
and dental procedures, and illnesses such as colds and flu have been
cited as common triggers. ACE Inhibitors (a blood pressure control
medication) and estrogen-derived medications (birth control pills and
hormone replacement drugs) have also been shown to exacerbate HAE
attacks.
HAE's genetic defect can be passed on in families. A child has a 50
percent chance of inheriting the disease from a parent with HAE.
However, the absence of family history does not rule out the HAE
diagnosis; scientists report that as many as 25 percent of HAE cases
today result from patients who had a spontaneous mutation of the C1-
inhibitor gene at conception. These patients can also pass the
defective gene to their offspring. Worldwide, it is estimated that this
condition affects between 1 in 10,000 and 1 in 30,000 people.
Public Awareness at the Centers for Disease Control and Prevention
HAE patients often suffer for many years and may be subject to
unnecessary medical procedures and surgery prior to receiving an
accurate diagnosis. Raising awareness about HAE among healthcare
providers and the general public will help reduce delays in diagnosis
and limit the amount of time that patients must spend without treatment
for a condition that could, at any moment, end their lives.
Once diagnosed, many individuals are able to piece together a
family history of mysterious deaths and episodes of swelling that
previously had no name. In some families, over many years, this
condition has come to be accepted as something that must simply be
endured. Increased public awareness is crucial so that these patients
understand that HAE often requires emergency treatment and disabling
attacks no longer need to be passively accepted. While HAE cannot yet
be cured, intelligent use of available treatments can help patients
lead a productive life.
In order to prevent deaths, eliminate unnecessary surgeries, and
improve patients' quality of life, it is critical that CDC pursue
programs to educate the public and medical professionals about HAE in
fiscal year 2013.
Research Through the National Institutes of Health
In years past, HAE research was conducted at the National
Institutes of Health (NIH) through the National Institute of Allergy
and Infectious Diseases, the National Institute of Neurological
Disorders and Stroke, the National Heart, Lung, and Blood Institute,
the National Institute of Child Health and Human Development, National
Center for Research Resources, and the National Institute on Diabetes
and Digestive and Kidney Diseases. However, NIH has not engaged in HAE-
specific research since 2009, and there is no longer any Federal
research as it relates to HAE.
As it may provide greater opportunities for HAE research, we
applaud the recent establishment of the National Center for Advancing
Translational Sciences (NCATS) at NIH. Housing translational research
activities at a single Center at NIH will allow these programs to
achieve new levels of success. Initiatives like the Cures Acceleration
Network are critical to overhauling the translational research process
and overcoming the challenges that plague treatment development. In
addition, new efforts like taking the lead on drug repurposing have the
potential to speed access to new treatments, particularly to patients
who struggle with rare or neglected diseases. As a rare disease
community, HAE patients may also benefit from the Therapeutics for Rare
and Neglected Diseases (TRND) program, housed at NCATS, as well
coordination with the Office of Rare Diseases Research (ORDR). We ask
that you support NCATS and provide adequate resources for the Center in
fiscal year 2013.
In order to reinvigorate HAE research at NIH, it is vital that NIH
receive increased support in fiscal year 2013. US HAEA recommends an
overall funding level of $32 billion for NIH in fiscal year 2013 and
the inclusion of recommendations emphasizing the importance of HAE
research to learn more about this rare disease and new pathways for
appropriate treatment.
Thank you for the opportunity to present the views of the HAE
community.
______

Prepared Statement of the U.S. Soccer Foundation
Thank you Chairman Harkin, Ranking Member Shelby, and Members of
the subcommittee, for the opportunity to submit this testimony. I am Ed
Foster-Simeon, the president and chief executive officer of the U.S.
Soccer Foundation (USSF). As Congress works on priorities for fiscal
year 2013 Federal appropriations, I would like to respectfully urge
that the subcommittee prioritize the Social Innovation Fund, an account
in the Federal Corporation for National and Community Service, which is
under the subcommittee's jurisdiction.
The U.S. Soccer Foundation, the major charitable arm of soccer in
the United States, was established in 1994. Thanks to support from
donors, our corporate partners, and countless youth development
organizations, the Foundation has provided more than $55 million in
grants, financial support, and loans to help fund programs and projects
in all 50 States. Thousands of individuals have benefited from the
Foundation's support, and the need continues to grow.
The U.S. Soccer Foundation seeks to improve the health and well-
being of children in urban economically disadvantaged areas using
soccer as a vehicle for youth development and social change.
Specifically, our goal is ensure that children in underserved
communities have easy and affordable access to high-quality out-of-
school programs that improve health and social outcomes among this
vulnerable population. We accomplish this through our innovative
program: Soccer for Success, a free afterschool sports-based youth
development program designed to address such national priorities as
childhood obesity and juvenile delinquency. I will discuss this program
further in my testimony, after detailing the urgent needs we are
working to address and the Federal resource that provides tremendous
support to these efforts.
There is a great need for the expansion of multi-faceted youth
development programs across the United States. First, childhood obesity
rates have increased sharply in the United States over the past 30
years. Today, nearly one-third of children and adolescents are
overweight or obese (White House Task Force on Childhood Obesity). The
rate of childhood obesity is even more alarming among children growing
up in economically disadvantaged communities. We can reverse this
pattern by providing children with more opportunities to be physically
active and by educating them on the importance of developing and
maintaining active, healthy lifestyles. In many urban communities,
however, there is a lack of suitable recreation facilities and
organized programming. Our urban soccer programs provide inner-city
children with safe havens to play, stay active, and engage with
positive adult role models and mentors who help them develop important
life skills.
Second, additional resources must be dedicated to address the needs
of America's at-risk youth. The statistics are alarming. According to
the U.S. Census Bureau's 2012 statistical abstract, more than 1.5
million juveniles were arrested in 2009, including more than 69,000 for
a violent crime. As reported in the National Youth Gang Survey, more
than 28,000 gangs were active in larger cities (55.6 percent), suburban
counties (23.3 percent), smaller cities (18.3 percent), and rural
counties (2.7 percent) among U.S. jurisdictions in 2009. According to
the U.S. Department of Health and Human Services (HHS), at-risk youth
across low-income urban communities not only have a higher chance of
being obese, but are more likely than youth from middle- or upper-class
families to join a gang, get in a fight or steal something worth over
$50.
Further, MENTOR/National Mentoring Partnership estimates that 18
million young people--nearly one-half of the population between the
ages of 10 and 18--live in situations which put them at-risk of ``not
living up to their potential.'' They also identified a total of 3
million youth currently benefiting from a formal mentoring
relationship. This leaves as many as 15 million American youth in want
or need of mentors which comprise what MENTOR calls the ``mentoring
gap''. To meet this need and overcome one of the biggest barriers in
the mentoring field, which is difficulty in mentor recruitment and
retention, alternatives to the classic ``one-to-one'' mentoring model
must be considered, utilized, and leveraged.
By leveraging Social Innovation Fund dollars, the U.S. Soccer
Foundation is expanding its Soccer for Success program to address these
national issues and reduce mentoring wait lists by utilizing a group
mentoring model.
According to the Corporation for National and Community Service,
the Social Innovation Fund leverages a modest investment of public
funds to significantly expand the most promising, evidence-based
nonprofit programs serving low-income communities. Each Social
Innovation Fund dollar must be matched by at least three private and
non-Federal funders. The proposed $50 million investment will bring an
additional $150 million to promising, locally driven programs with
evidence of compelling results--including the Foundation's programs.
The Social Innovation Fund program clearly has wide-ranging impact.
Currently, there are more than 200 organizations benefiting from the
Social Innovation Fund, operating in more than 100 cities in 31 States
and our Nation's capital. This national footprint will expand after all
of the 2011 sub-grants have been awarded. Under consistent and
effective program evaluation, the Social Innovation Fund is an
excellent example of the Federal dollar being used to propagate best
practices and ensure greatest impact.
The U.S. Soccer Foundation is a 2011 recipient of a $2 million, 2-
year Social Innovation Fund award that is enabling us to reach 12,000
children, 3 days a week, 24 weeks a year, through Soccer for Success--
our sports-based after school youth development program. Soccer for
Success is an evidence based program that promotes healthy lifestyles
and works to reduce childhood obesity and juvenile delinquency rates
among at-risk youth in underserved urban communities by providing
exercise, nutritional education, and mentoring by positive adult role
models in a safe environment.
the U.S. Soccer Foundation is matching the $2 million Social
Innovation Fund award dollar for dollar. Each sub-grantee is matching
their award dollar for dollar with private, non-Federal dollars. The
result is that each Federal taxpayer dollar awarded is being leveraged
3-to-1.
The following is a list of the 13 community-based organizations
selected as Social Innovation Fund sub-grantees who will implement
Soccer for Success in the upcoming school year. This list includes the
number of children anticipated to be served:

----------------------------------------------------------------------------------------------------------------
No. of
SIF Soccer for Success Organizations City/State Grant (2- children
year award) served
----------------------------------------------------------------------------------------------------------------
Brotherhood Crusade........................ Los Angeles, California.................. $600,000 1,600
Boys & Girls Club of Camden County......... Camden, New Jersey....................... 200,000 840
Boys & Girls Club of Metro Atlanta......... Atlanta, Georgia......................... 200,000 670
Colorado Fusion Soccer Club................ Denver, Colorado......................... 300,000 1,125
DC Scores.................................. Washington, DC........................... 220,000 650
El Monte CBI............................... El Monte, California..................... 270,000 1,080
Independent Health Foundation.............. Buffalo, New York........................ 320,000 700
Think Detroit PAL.......................... Detroit, Michigan........................ 300,000 950
Widener University......................... Chester, Pennsylvania.................... 230,000 1,000
Boys & Girls Club of Trenton............... Trenton, New Jersey...................... 200,000 1,000
YMCA of Greater Dayton..................... Dayton, Ohio............................. 320,000 1,000
Houston Parks & Recreation Department...... Houston, Texas........................... 240,000 1,000
Washington Youth Soccer Association........ Seattle, Washington...................... 200,000 800
--------------------------------------------------------------------
Total................................ ......................................... 3,600,000 12,415
----------------------------------------------------------------------------------------------------------------

These 13 organizations demonstrated through a rigorous selection
process the strong organizational capacity needed to manage the grant
and implement the program. They serve the desired population--children
growing up in economically disadvantaged urban communities--have the
ability to match the funds awarded dollar for dollar, have an effective
cost model for program implementation, and have strong partnerships and
funding prospects for long-term sustainability.
Before I end, let me share with you a story about the impact youth
development programs like Soccer for Success can have in addressing
national priorities. Celeste Amaya, a 10-year old girl in our Los
Angeles program, weighed 145 when she began our program. Soccer for
Success' physical activity and nutritional lessons component has helped
her drop nearly 16 lbs. ``I eat the same food, but it was the amount of
food'', she says, about cutting back on portion size. ``A lot of the
clothes [that I had outgrown] fit me now,'' she shared. Celeste
recently weighed in at 129 lbs. Soccer for Success has not only made a
difference in Celeste's life, but also has helped the entire family
become more active. Celeste's mother says that when her daughter's
doctor warned her that her overweight child could develop diabetes, the
whole family became determined to get in shape. ``We do everything
together'', says Mrs. Amaya. While her mom gets exercise by walking
around the soccer field with some of the other parents, as part of
Soccer for Success Los Angeles' parent engagement component, Celeste's
father helps the Soccer for Success mentors coach Celeste and the other
children. Celeste's little sister also participates in Soccer for
Success. Due to the funding we received from the Social Innovation
Fund, we will be able to leverage each Federal dollar and continue
making this type of impact, while changing the lives of more than
12,000 youth like Celeste.
In conclusion, we respectfully ask you to support $70 million in
funding for the Social Innovation Fund which is the level at which it
is authorized in the Serve America Act. At a time when the Federal
Government seeks to leverage every taxpayer dollar to greatest effect,
the Social Innovation Fund provides a critical mechanism for
identifying innovative, cost-effective, evidence-based programs like
Soccer for Success--programs that make a real difference in lives of
the Nation's most vulnerable children. Every child should have a chance
to play, to be a teammate, to build self-confidence and to live a
healthy and active life. Funding from the Social Innovation Fund helps
to further this vision.
Thank you once again for the opportunity to provide testimony to
your subcommittee in support of this important program. Your attention
and assistance are greatly appreciated.
______

Prepared Statement of the United Tribes Technical College
For 43 years, United Tribes Technical College (UTTC) has provided
postsecondary career and technical education, job training and family
services to some of the most impoverished, high risk Indian students
from throughout the Nation. We are governed by the five tribes located
wholly or in part in North Dakota. We are not part of the North Dakota
State college system and do not have a tax base or State-appropriated
funds on which to rely. We have consistently had excellent retention
and placement rates and are a fully accredited institution. Section 117
Carl Perkins Act funds represent about one-half of our operating budget
and provide for our core instructional programs. The requests of the
United Tribes Technical College Board for fiscal year 2013 is for
Department of Education programs as follows:
--$10 million for base funding authorized under section 117 of the
Carl Perkins Act for the Tribally Controlled Postsecondary
Career and Technical Institutions program (20 U.S.C. section
2327). This is $1.8 million over the fiscal year 2012 level and
the President's request. These funds are awarded competitively
and are distributed via formula;
--$30 million as requested by the administration and the American
Indian Higher Education Consortium for title III-A (section
316) of the Higher Education Act (Strengthening Institutions
program). This is $5 million over fiscal year 2012 enacted;
--Maintain Pell Grants at the $5,635 maximum award level; and
--Support the proposed Community College to Career Fund.
authorization
United Tribes Technical College began operations in 1969. We
realized that in order to more effectively address the unique needs of
Indian people to acquire the academic knowledge and skills necessary to
enter the workforce we needed to expand our curricula and services. We
were scraping by with small amounts of money from the Bureau of Indian
Affairs, and so decided to work for an authorization in the Department
of Education. That came about in 1990 when the Carl Perkins Act was
reauthorized and it included specific authorization for what is now
called the Tribally Controlled Postsecondary Career and Technical
Institutions program (Section 117). The Perkins Act has been
reauthorized twice since then--in 1998 and in 2006, with Congress each
time continuing the section 117 Perkins program.
some important facts about united tribes technical college
We have:
--A dedication to providing an educational setting that takes a
holistic approach toward the full spectrum of student needs--
educational, cultural, and necessary life skills.
--Renewed unrestricted accreditation from the North Central
Association of Colleges and Schools for the period July 2011
through July 2021, including authority to offer all of our full
programs online.
--Services including a Child Development Center, family literacy
program, wellness center, area transportation, K-8 elementary
school, tutoring, counseling and housing.
--A semester completion rate of 82 percent.
--A graduate placement rate of 83 percent (placement into jobs and
higher education).
--A projected return on Federal investment of 20-1 (2005 study).
--Over 30 percent of our graduates move on to 4 year or advanced
degree institutions.
--A current student body from 63 tribes who come mostly from high-
poverty, high-unemployment tribal nations in the Great Plains;
many students have dependents.
--76 percent of undergraduate students receive Pell Grants.
--21 2 year degree programs, 12 certificates, and 3 bachelor degree
programs (elementary education; business administration; and
criminal justice).
--An expanding curricula to meet job-training needs for growing
fields including law enforcement and health information
technology. We have new short-term training programs for
welding technology (in particular demand in North Dakota
because of the oil boom), electrical, energy auditing, and
Geographic Information System technology.
--A dual enrollment program targeting junior and senior high school
students, providing them an introduction to college life and
offering high school and college credits.
--A critical role in the regional economy. Our presence brings at
least $34 million annually to the economy of the Bismarck
region.
--A workforce of 360 people.
--An award-winning annual powwow which last year had participants
from 60+ tribes and international indigenous dance groups,
drawing over 10,000 spectators.
funding requests
Section 117 Perkins Base Funding.--Funds requested under section
117 of the Perkins Act above the fiscal year 2012 level are needed to:
maintain 100-year-old education buildings and 50-year-old housing stock
for students; upgrade technology capabilities; provide adequate
salaries for faculty and staff (who have not received a cost of living
increase for the past year and who are in the bottom quartile of salary
for comparable positions elsewhere); and fund program and curriculum
improvements.
Acquisition of additional base funding is critical as UTTC has more
than tripled its number of students within the past 8 years while
actual base funding, including Interior Department funding, have not
increased commensurately (increased from $6 million to $8 million for
the two programs combined). Our Perkins funding provides a base level
of support while allowing the college to compete for desperately needed
discretionary contracts and grants leading to additional resources
annually for the college's programs and support services.
Title III-A (Section 316) Strengthening Institutions.--Among the
Title III-A statutorily allowable uses is facility construction and
maintenance. We are constantly in need of additional student housing,
including family housing. We would like to educate more students but
lack of housing has at times limited the admission of new students.
With the completion this year of a new Science, Math and Technology
building on our south campus on land acquired with a private grant, we
urgently need housing for up to 150 students, many of whom have
families.
While UTTC has constructed three housing facilities using a variety
of sources in the past 20 years, approximately 50 percent of students
are housed in the 100-year-old buildings of the old Fort Abraham
Lincoln, as well as in housing that was donated by the Federal
Government along with the land and Fort buildings in 1973. These
buildings require major rehabilitation. New buildings for housing are
actually cheaper than trying to rehabilitate the old buildings.
Pell Grants.--We support maintaining the Pell Grant maximum amount
to at least a level of $5,635. As mentioned above, 76 percent of our
students are Pell Grant-eligible. This program makes all the difference
in the world of whether these students can attend college.
Community College to Career Fund.--We support the proposed
Community College Career Fund, and understand that tribally controlled
colleges will be eligible applicants. UTTC is ready with training--
campus-based and online--to help meet the needs of high-demand
businesses.
government accountability office report
As you know, the Government Accountability Office in March 2011
issued two reports regarding Federal programs which may have similar or
overlapping services or objectives (GAO-11-318SP of March 1 and GAO-11-
474R of March 18). Funding from the Bureau of Indian Education (BIE)
and the Department of Education's Perkins Act for Tribally Controlled
Postsecondary Career and Technical Institutions were among the programs
listed in the supplemental report of March 18. The GAO did not
recommend defunding these or other programs; in some cases
consolidation or better coordination of programs was recommended to
save administrative costs. We are not in disagreement about possible
consolidation or coordination of the administration of these funding
sources so long as funds are not reduced.
Perkins funds represent about 46 percent of UTTC's core operating
budget. The Perkins funds supplement, but do not duplicate, the BIE
funds. It takes both sources of funding to frugally maintain the
institution. Even these combined sources do not provide the resources
necessary to operate and maintain the college and thus we actively seek
alternative funding to assist with academic programming, deferred
maintenance of our physical plant and scholarship assistance, among
other things.
We reiterate that UTTC and other tribally chartered colleges are
not part of State educational systems and do not receive State-
appropriated general operational funds for their Indian students. The
need for postsecondary career and technical education in Indian country
is so great and the funding so small, that there is little chance for
duplicative funding.
There are only two institutions targeting American Indian/Alaska
Native career and technical education and training at the postsecondary
level--United Tribes Technical College and Navajo Technical College.
Combined, these institutions received less than $15 million in fiscal
year 2012 Federal operational funds ($8 million from Perkins; $7
million from the BIE). That is a modest amount for two campus-based
institutions which offer a broad (and expanding) array of programs
geared toward the educational, job-training, and cultural needs of
their students.
UTTC offers services that are catered to the needs of our students,
many of whom are first-generation college attendees and many of whom
come to us needing remedial education and services. Our students
disproportionately possess more high risk characteristics than other
student populations. We also provide services for the children and
dependents of our students. Although BIE and section 117 funds do not
pay for remedial education services, we make this investment through
other sources of funding to help ensure that our students succeed at
the postsecondary level.
Perkins funds are central to the viability of our core
postsecondary educational programs. Very little of the other funds we
receive may be used for core career and technical educational programs;
they are highly competitive, often one-time supplemental funds.
Thank you for your consideration of our requests.
______

Prepared Statement of the University of Virginia
This testimony is submitted for the record on behalf of the
University of Virginia, a nonprofit public institution of higher
education located in Charlottesville, Virginia. The University sustains
the ideal of developing, through education, leaders who are well-
prepared to help shape the future of the nation. In fiscal year 2011
the University received research awards totaling over $338 million from
all sources (Federal and State agencies, industry and private
foundations). Of this amount, $241 million, or 71 percent, came from
Federal grants and contracts.
As Vice President for Research and on behalf of UVa, I urge the
Committee to support $32 billion for the National Institutes of Health
(NIH) in fiscal year 2013. We are aware of the difficult budgetary
decisions facing Congress and the administration in the coming years,
yet Federal investments in scientific and engineering research remain
critical to spurring innovation, driving the economy, and developing
the knowledge and technologies to tackle current and future health
challenges. According to the Science Coalition, more than half of our
economic growth in the United States since World War II can be traced
to science-driven technological innovation. The platform for this
innovation has been scientific and engineering research conducted at
universities and supported by the Federal Government through agencies
such as NIH.
Ground-breaking discoveries to better diagnose and treat
debilitating human diseases and improve the health and quality of life
of our citizens would not be possible without the foundational work of
basic research. Universities conduct most of the basic research in this
country and NIH is the critical funder of basic biomedical research.
NIH continues to be the largest source of Federal research funding at
UVa, providing over $144 million in competitive grants to researchers
at UVa in fiscal year 2011 alone. Funding from NIH has allowed faculty
and students at UVa to conduct ground-breaking research to transform
our understanding of and develop new treatments for diabetes, asthma,
cardiovascular disease, and Alzheimer's disease, among many other
conditions, while also furthering our fundamental knowledge of biology,
health, and development from childhood to old age.
Considering the tight budget conditions that the country faces, it
is imperative to make strategic investments in critical areas of
science and biomedical research that will produce technological
innovation and societal benefit. For example, continued support for the
National Institute of Biomedical Imaging and Bioengineering (NIBIB) is
critical to advancing the next generation of technologies that can be
used to address a myriad of health challenges. Researchers at UVa are
already making substantial advances on a wide array of new technologies
for applications such as molecular imaging and tissue engineering.
NIH is also at the forefront of efforts to ensure that basic
research is transformed into products and knowledge that improve
everyday life and power our innovation economy. UVa appreciates NIH's
commitment to funding programs that support commercialization such as
the new National Center for Advancing Translational Sciences (NCATS).
UVa also urges support for a newly created pilot program to fund proof-
of-concept research that will enable universities to more effectively
commercialize new technologies and propel the creation of successful
small businesses. Modeled after the Coulter Process and authorized in
the Small Business Innovation Research (SBIR) and the Small Business
Technical Transfer (STTR) Reauthorization Act of 2011, the program will
allow NIH to award competitive grants of up to $1 million to
universities and other research institutions, which then would award
grants to investigators for activities such as prototype development,
market research, or developing an intellectual property strategy and/or
business development plan. We look forward to seeing how NIH will
implement this new program and urge Congress to encourage NIH to
support proof-of-concept funds to advance commercialization.
At UVa we are devoting significant institutional resources to the
process of bringing discoveries to the marketplace and have experienced
considerable success. For instance, UVa and the Coulter Foundation have
recently teamed to create the UVa Coulter Translational Research
Partnership to foster collaborations between clinicians and biomedical
engineers at UVa in order to advance translational research which will
result in new technologies to improve patient care and human health. An
independent audit has shown that our proof-of-concept funds have led to
a 7:1 return on investment after 5 years and a 42:1 return on
investment for the top 10 percent of portfolio projects. We attribute
UVa's success in proof-of-concept research to the now nationally well-
known Coulter process, involving a very diverse review board, in-person
final review sessions, milestone-driven projects, quarterly reporting
that is simple yet effective in re-directing projects, the ``will to
kill'' projects or re-direct funds if insurmountable obstacles occur,
and excellent networking to the venture capital and private sector. The
key differentiators of this process as we employ it at UVa versus most
prior proof-of-concept funding mechanisms is the in-person diligence on
the involved people and ideas, dedicated project manager, the diverse
composition of the board, the urgency of quarterly reviews, and will to
re-direct funds as results emerge.
Conclusion
I would like to thank the Committee for your support of biomedical
research in these tough budgetary times. While we understand that
funding is greatly constrained, I hope that you will choose to support
a strategic increase for the National Institutes of Health to spur
innovation, strengthen our technology and economic base, train the next
generation of scientists and engineers, and improve our health. Further
investment in discovery science and commercialization will help create
the new discoveries and technologies needed for long-term economic
growth.
I thank you for your consideration of these important issues.
______

Prepared Statement of the Department of Mines, Minerals and Energy,
Commonwealth of Virginia
We are writing in opposition to the fiscal year 2013 budget request
for the Mine Safety and Health Administration (MSHA), which is part of
the U.S. Department of Labor. In particular, we urge the subcommittee
to reject MSHA's proposed reduction of $5 million for grants to States
for safety and health training of our Nation's miners pursuant to
Section 503(a) of the Mine Safety and Health Act of 1977.
Over the past several years, MSHA's budget request for State's
Grants was approximately $9 million, which approached the statutorily
authorized level of $10 million, but still did not consider
inflationary and programmatic increases being experienced by the
States. This drastic change in funding the State's Grants programs will
certainly have negative impacts on the availability and quality of mine
safety training. Without full funding of the State's Grants programs,
the Federal required safety training for miners will suffer. This
situation will be further exacerbated by the new statutory, regulatory
and policy requirements that grow out of the various reports and
recommendations pending the Upper Big Branch mine disaster
investigation. We therefore urge the subcommittee to restore funding to
the statutorily authorized level of $10 million for State's grants so
that States can meet the training needs of miners and fully and
effectively carry out State responsibilities under Section 203(a) of
the Act.
While we can appreciate MSHA's desire to realign its resources to
focus on inspection and enforcement activities, one of the most
effective ways to ensure miner health and safety in the first place is
through comprehensive and high quality training. MSHA Assistant
Secretary Main specifically spoke of this in a recent letter to State's
Grant recipients wherein he stated: ``As in the past, we are reaching
out to grantees, recognizing the positive impact you have in delivering
training to miners. I am asking that you incorporate, as appropriate
training on these types of fatal accidents as well as measures needed
to prevent them. Increased training and awareness is necessary if we
are to prevent these types of deaths''.
Certainly, we can all agree that high quality; effective training
plays a critical role in preventing miner deaths, injuries and illness
across the Nation. Comprehensive, up-to-date training is the most
effective means for preparing miners to recognize and correct unsafe
acts and unsafe conditions in the workplace. Unsafe acts and unsafe
conditions have been proven to contribute significantly to accidents
and injuries. Training enhances the capability of miners to recognize
potential hazards in the workplace and to follow safe work procedures.
The Virginia State's Grants training program has contributed
significantly to training approximately 5,400 miners, annually, for the
past 5 years. Our training program also develops miner training
programs, mine safety videos, mine and equipment examination record
books, among other useful resources. These programs and materials are
distributed to industry, independent and college trainers and mine
officials to enhance their capability to provide on-target, up-to-date,
effective training for miners.
The DMME has been in the forefront of providing this training in
Virginia for over 40 years and is best positioned to continue that work
into the future. The Federal Government's relatively modest investment
of money in supporting the States to coordinate this training has
certainly paid huge dividends in protecting lives and preventing
injuries/illnesses for our miners. The VA-DMME State's Grants programs
play a particularly critical role in providing quality mine safety
training and providing special assistance to small mine operators. Our
State's grant program provides these services at a cost well below what
it would cost the Federal Government to do so.
Without the training programs that are funded/provided by the VA-
DMME State's grants program, pursuant to the funding that we receive
from MSHA, mine safety training responsibilities and costs will shift
to mine operators. Mine operators will be compelled to comply with
MSHA-required miner training by obtaining training services from any
available resource. Quality, effective training for our most valuable
resource--the miner--will be diminished, especially for miners employed
at small mines (50 or less employees). In addition, some training
services now funded/provided by the VA-DMME State's grants program will
be significantly reduced or eliminated.
In conclusion, the everyday miner in the workplace will be the
greatest loser if this proposed funding reduction is imposed upon the
VA-DMME State's Grant training program.